Age 31
Sex F
Height 5’3
Weight 225
Race white
Duration of complaint several months
Location Michigan
Any existing relevant medical issues: demyelinating neuropathy, type 1 diabetes
Current medications: insulin, gabapentin 300mg 3x daily, lamictal 125 mg daily
Skin tag/mole concerns, on my neck.
I have a skin tag/mole that has grown quite a bit over the last few months.bit is much larger than the others I have. I’ve notice that it looked different than before, but didn’t think much of it. Now I noticed it’s gotten much darker and has a rough texture, almost like a scab in one spot. It almost looks ike a brain appearance, it isn’t smooth. There is pink discoloration around the base and it’s tender. I’ve contacted my doctor but have not heard back. It seems like there are several colors to it. Is this something I should be concerned about?
I have not been “well” over the last year. I’m working with 2 neurologists, an endocrinologist, my pcp and awaiting my rheumatologist appt. Fatigue, nausea, joint and muscle pain, headaches, hot flashes, flushing of my face and chest, dizziness, temperature intolerance.
I don’t know how to attach photos, it says they’re not allowed. I have posted in another group with photos.

Hi, I (39/AFAB enby) have been suffering from the hiccups for at least 1.5 years. That's when I first noticed it; it happened to coincide with recovery from a knee surgery that involved general anesthesia. I have no idea if the two are at all related or if I just had a lot of free time on my hands after the surgery to realize I had the hiccups all the time.
Anyway, for 1.5 years, I've had the hiccups 12-15 times a day, each episode lasting 5-15 minutes. Sometimes I could get rid of them using various methods people have taught me over the years, but at other times I couldn't get rid of them & just had to wait for them to stop.
I don't have GERD (I've been tested) or drink to excess, no chewing gum, no eating too fast, no spicy foods, no indigestion. Anything that every site (medical or otherwise) says causes hiccups just doesn't apply to me. At this point, I don't care why I get them & just want them gone. They disrupt my life.
Finally, about 7 weeks ago, I went to my PCP and told him about my issue for the first time. He looked at all the meds I was taking (see below) and said that methotrexate could cause hiccups. I can't stop my MTX since it treats my lupus, so treating the hiccups was the only option. He said the way to stop them was a low dose of thorazine; he prescribed 10mg thorazine nightly (and 40 mg famotidine). It took about two weeks, but the thorazine finally did its job & for the last 5 weeks, I've only had a single hiccup here or there very occasionally.
However, as was to be expected, I've gained weight, about 8-10 lbs in less than two months. Since 2019, I've worked extremely hard through diet and exercise to lose 80 lbs & it's exceedingly important to me that I don't gain any of it back, not even 10 lbs, for my own mental and emotional well-being and self-worth (as sad as that may sound).
I decided to stop taking the thorazine about 3 days ago, hoping that maybe it was something I wouldn't have to be on forever to keep them at bay and maybe those almost two months on the med were enough to break the cycle (🤞). No such luck. The hiccups are back.
Do you know of any other treatments for chronic hiccups that don't require taking an antipsychotic? I'm going to schedule another appointment with my PCP, but I'm having knee surgery on Friday and have way too much to get done at work before then in order to make an appointment this week.
Meds I'm taking (leaving out the thorazine): - Levothyroxine 50 mcg daily; hypothyroidism; started 2015 - Wellbutrin xl 150mg daily; depression; started 2017 (just decreased from 300mg 2-3 weeks ago) - Hydroxychloroquine 300mg daily; lupus; started 2018 - Methotrexate 20mg weekly; lupus; started 2021 or 2022 - Aimovig 140mg/ml weekly; migraines; started 2018 - Famotidine 40mg daily; hiccups; started 7 weeks ago - Topamax 50mg nightly; neuropathy in inner ear; started 2023 - Trazodone 300mg nightly; insomnia; started 2018? - Lamictal 50mg daily; mood stabilizer; started 2024 (decreased from 100mg 2-3 weeks ago) - Alprazolam 0.5mg PRN; severe anxiety or panic attack; started 2024 - Folic acid 1mg daily; MTX use; started 2021 or 2022 - Hydrocodone 7.5mg/325mg PRN; knee pain (upcoming knee surgery on 3/29/24) - Ipratropium bromide .06% nasal spray 2-3x daily; non-allergic rhinitis - Docusate sodium 100mg to 200mg daily; chronic constipation/IBS - Fiber gummies 2.5mg every other day; chronic constipation/IBS - Miralax 17g packet PRN; chronic constipation/IBS - Bisacodyl suppositories PRN; chronic constipation/IBS

Hello all! Firstly I hope you are all doing well on this thread/community. I wanted to hop on here to share my side effects of lamictal. I was Dx with epilepsy last year at 29yo. Partial focal onset nocturnal seizures. I was prescribed Keppra as my first medication after having 3 episodes of full tonic clonic seizures.
Keppra sucks- made me a mood swinging son of a gun. Which is not normal for me. Keppra rage slowly creeped up and I asked my neurologist what other medications we could explore. He recommended lamictal to me.
Started off fantastic with the lamo dosage. Noticed my mood stabilize and was much more calmer than I had been in months.
The plan was to get me off keppra and go full on lamo. I was doing the normal titration for epilepsy protocols. I got my labs done 3 weeks ago and I was sub-theraputic levels. My MD then recommended we titrate up to 150 mg am and 200 pm so 350 in total. This is where my symptoms began… I experienced heart palpitations, clammy skin, sweating my sheets and shirts everyday! My fingers and toes were extremely cold almost like neuropathy. My insomnia is out of control and the nausea after taking this rx has become unbearable.
Devastated as I was hoping lamictal would be the one for me. I was hoping if anyone on this thread has had any luck with other medications for epilepsy as MD started throwing out multiple other medications after I told them this one was not working anymore for me. Just wondering if anyone has had any luck finding another mood stabilize anti seizure rx out there.
Thank you!!!

I want to post my story, in hopes that I’ll help even one person here. This is not to discourage the use of these meds, but to seriously say that your nervous system and brain is not a game to be continually played with.
I developed depression and what I know NOW to be PMDD when I got my period at 14. My mom instantly put me on Prozac which I stayed on for 10 years. I started birth control and it made me more depressed so we kept increasing Prozac. I stopped birth control and went off the rails. This resulted in stopping Prozac and trialing every other ssri over a 7 month period. My doc would put me on one, take me off cold Turkey due to side effects. Finally landed on TWO ssris at the same time and lamictal AND trazodone for Ssri induced insomnia. Due to various side effects meds were increased, decreased, stopped cold Turkey, switched since then. I honestly think I was dealing with cumulative withdrawal symptoms and trying to cover it up by adding and increasing/switching meds.
Fast forward 20 years of constant med changes and my nervous system broke. I have gastroparesis, severe dysautonomia, POTS, vision loss, neuropathy, awful disgusting sensory issues, morning dread from hell, suicidal ideation, panic attacks I never had, severe adrenaline issues, worsening insomnia, ect the list goes on and on. It appears to be PAWS.
Not one psychiatrist has asked me about alcohol or drug use, my diet, exercise, my gut health, or even THOUGHT about the influence of hormones. I’m 32 and lost my job as an NP and am basically home bound trying not to die everyday. All from some MILD depression compared to what I experience now. I was told at 14 years old I’d need these meds the rest of my life. These meds are studied for 6 months. There are no safety studies longterm, especially not on what these drugs do to the brain and nervous system. I blame myself, but I was a kid and how was I supposed to know.
Parting message- be responsible with what you put into your body and don’t go changing things constantly like I did.

I’ve been having experiences with the healthcare system that I can only describe as traumatic. The stress and trauma of trying and failing to get health care in this country is making me feel like I want to fall apart despite my best efforts to get my life together. Right before I turned 30 I quit drinking, quit smoking, started exercising a lot. I had just moved to California and spent a lot of time outside being active. Skateboarding and shit. I was optimistic that because this state has free health care for low income people, that I would be able to get proper treatment for my mental health that had been spiraling out of control my entire life. In high school I was like half productive, would have insomnia and skipped school and was insanely depressed but had nerd friends and would study sometimes and basically was seen as a productive, successful student. In college I completely unraveled, had a drinking problem, was sexually assaulted, had an eating disorder and struggled so hard financially that I didn’t have time to focus on school. I didn’t have friends. Then for my entire 20s I was an extreme mess and committed a series of life-ruining offenses mostly involving dating men and having a bad experience on birth control.
So in like 2020 I had an extreme meltdown. Or a series of meltdowns really. Was suicidal. In January of 2021 I finally was able to see a psychiatrist and was put on Abilify. I was still working out every day and was active and went hiking and shit and read a lot, I was on pandemic unemployment which was great. Then that ended and I had to get a job at a grocery store. I slipped and fell on my back at a movie theater and forgot that it even happened because it didn’t hurt that much. At some point in summer of 2021 I started having leg cramps whenever I worked out. I would just stop and stretch and go back to working out. The cramping got progressively worse and more debilitating. I stopped working out. By April of 2022 I had gained 40 lbs from the combination of being on Abilify and not working out. I would still walk to work as I lived in a walkable neighborhood but by May of 2022, I would start limping 10 minutes into my walk and have leg cramps and have to stop walking. My muscles felt very stiff. At that point I had gained 50 lbs. Unfortunately I hadn’t been to the doctor regularly, like, since I was a child. I started seeing a primary care physician who took Medi-Cal. She didn’t seem concerned about my leg cramping or really ask me any questions about it at all. I actually went to the ER in May of 2022. They did an x-ray on both my legs, an ultrasound, found nothing, and sent me home and told me to follow up with my regular doctor. My regular doctor didn’t seem concerned. Had no suggestions or anything. I kept gaining weight and my cholesterol shot up. I had low back pain and any time I laid on my back to do yoga or an exercises I would feel pain and a bulge in my lower back. I stopped taking Abilify cold turkey which was stupid obviously but my dad died at 43 of a heart attack and I wanted to stop gaining weight and for my cholesterol to go back down. By September of 2022 I weighed 200 lbs and started having blood in my stool. Like, a lot of blood. This became the focus of my primary care doctor’s efforts. She couldn’t gaslight me about it because they took a stool sample and there was blood in it. I was also having extreme constipation and painful bowel movements. She referred me to a GI doctor. They told me I needed a colonoscopy which I wasn’t able to get until January of 2024 because their office was backed up with appointments and also unprofessional to a negligent degree. In December of 2022 I started having this feeling like bugs were crawling all over me. Some days I would have pain in my arms or legs and would lay in bed and not move for the entire day. In January of 2023 I got Covid and then a subsequent ear infection. I got fired from my job because I told them I had Covid the day before New Year’s and left early, which they claimed I did without permission even though they gave me permission bc I was at work with a fever of 101. After that I started having the feeling like bugs were crawling on me all the time. I was itchy all over my body. I had genital itching. I didn’t know what was happening. I started to become convinced I had bedbugs or crabs or body lice. I wondered if I was hallucinating the feeling. I had numbness in my hands and feet. I would feel lightning bolts of pain in my shins. Pain in my jaw. A weird tingly feeling like lightning bolts in my anus. Numbness in my vagina. The feeling like my vagina was falling asleep when I sat down. I became convinced I had crabs and my pcp gave me Permethrin without even examining me to confirm I had them. I had just broken up with my boyfriend so I figured he cheated on me and I got crabs. It didn’t seem that far fetched. I thought I had bedbugs and I threw like 60 percent of my clothing away along with my bed. I thought I had diabetes so I got my A1c tested and it was like 5.1. Not even prediabetic. Eventually my dermatologist told me that the itching and bug crawling feeling was caused by a nerve issue. I told my pcp that and she reluctantly gave me a referral to a neurologist. The neurologist gave me an EMG (after asking me about 6 times if I had diabetes. I don’t know why me saying no once wasn’t enough). It was normal. While getting the EMG I mentioned the bug crawling symptoms to the doctor and he offhandedly said “Sounds like restless leg syndrome,” but I was not diagnosed with that and there was never any follow up. I kept complaining about the leg pain and cramping to my pcp and she said “You have to stretch” and “You’re probably dehydrated.” I pointed out to her that I used to take yoga classes and I would still have the same pain but she didn’t give a shit. Six months went by and I got a new job working on my feet. I got a new psychiatrist who put me on Latuda. It made my feet swell up. So then they put me on Lamictal. I lost 25 pounds on Lamictal and my leg pain wasn’t bothering me as much day to day. I still didn’t exercise. I attempted to but I was too freaked out by the back pain and the bulge in my back and I worried about exacerbating an issue. I asked my pcp for a referral for physical therapy so I could learn to work out without exacerbating my back or leg issue. She reluctantly gave it to me and I finally went in December of 2023. I explained to the physical therapist my issues and he recommended I get an MRI for my back but told me he was only allowed to treat what was on the referral, which was “Peripheral neuropathy.” The exercises they told me to do made my back hurt insanely bad. I told my pcp and she reluctantly gave me a referral for an x-ray. The radiologist said I have “minimal narrowing” of the L5-S1 discs. I have an MRI for my lumbar spine tomorrow morning. I just want to be able to exercise again so I can feel good and be healthy. I’ve been insanely depressed not exercising. I don’t like being around people. The main reason I want to lose weight is that I feel like it matters for my career, and whether or not I have a good job matters a great deal because it dictates what kind of health care I can receive and my quality of life. I wish health care in this country wasn’t tied to your employer. I wish I didn’t have to go to a shitty HMO who doesn’t care about me as a patient or have any empathy.

Me: 25, F, white, overweight
Current diagnoses: Celiac, visceral hypersensitivity, bipolar II, GAD (generally no health anxiety), keratoconus
Current medications: Lamictal 300mg XR, Wellbutrin 150mg XR, Lexapro 20mg, Hydroxyzine 25-50mg as needed, Nexplanon implant (3 years old), Zyrtec as needed
Concerns:

• Peripheral neuropathy that has turned from pins and needles and numbness to pain like a needle being stabbed into my fingers and toes. Attributed initially to celiac but pain is not typical there.
  
• Nerve pain in abdomen. Visceral hypersensitivity is nerve pain, was successfully managed with nortriptyline but stopped bc of side effects.
  
• Eye flashes and pain. Attributed to keratoconus and general bad vision. Eye doc said migraines likely.
  
• Difficulty with word recall, dizziness, balance issues/clumsiness. Attributed to lamictal.
  
• Involuntary urination at night/urinary leakage. I’ve had my kidneys and urinary tract imaged with and without contrast, no structural issues or signs of inflammation/infection. Not pregnant or diabetic. No UTI or STD.
  

The last symptom is what had me googling because I can’t make it make sense with anything I already have or take. A nerve issues seemed most obvious to me with my already established nerve pain and googling led me down to early symptoms of MS with the urinary issues, so naturally I’d like to get some other opinions of options. I’ve got an appointment with my PCP to discuss next steps including likely an appt with a neurologist but want to be informed going in.

Hi I’m 19M , afab.
My diagnoses are , POTS , neuropathy, bpd and adhd.
My medications are:
ADHD: Vyvanse & Intuniv Mood: Zoloft, Lamictal & Seroquel POTS: Propranolol Anti-shark week: Synd (progesterone birth control)
Right now for the past hour or two my chest feels really tight and my heart keeps jumping to 120 bpm, ( the highest it’s ever gotten of all time is 190 ) , and I’m feeling palpitations in my chest AND my throat ? Like in the center right where your throat starts from your shoulders? I don’t know if it’s because of my pots or something else but it’s never happened before until now and I’m not sure what to do, my heads fuzzy and it’s tight to breath and occasionally I feel a slight buzz in my chest.

33
Male
5'8
186
All races most people call me white
Labor day then hospital security police report said that they pushed me and I moved my arm and they thought that I was going to hit either them or their coworkers so they had to safely restrain me. In reality the instigator had his full weight on my clavicle then a week later I crashed my scooter going 15 mph and fell on my left side 4 days ago someone clapped my clavicle it caused my knees to buckle from the pain pain usually doesn't affect me it's just a message not to cause injury I moved around untill it felt ok
Left collar bone
Previous tbi recent TBI from midsummer previous open fracture on left arm 14 surgeries vascular and nerve replacement median and radial nerve neuropathy mental health diagnosis heavy tobacco user asthma heavy weed smoker past narcotic use current relatively healthy diet overall health good got stabbed 6 times 1 month before labor in the arm trap twice in the back neck and spine the wounds are healed but they were angry red for the whole time they were open
Weed.... I have lamictal in case but I don't take pills
I can't make a photo work it says the community doesn't allow attachments I will dm pics to everyone that asks
I'm not sure any other requirements you may have please let me add any missing information in a comment it won't let me copy and paste once you decline it
After the guy clapped me on the shoulder I've been experiencing extreme pain but at the same time I no longer have sharp pain that stops me in my tracks in scared that I've damaged a nerve but I still have the same limited movement I usually have no feeling change do to neuropathy but the bone doesn't seem to want to fuse anymore. I have internal bleeding but it seems to not be serious the 2 day after he hit me I had blood halfway down my bycep the next day it was clearing up but my chest had yellow on it. By the time I took my shirt off at the hospital it was like 12 hours later. And there was much more yellow, the doctor was telling me there old bruises so its ok Im telling them I didn't have them when I put in the shirt
I cannot get care at my local hospital they say I'm fine and that the x-rays show everything is as it should. I do not trust them because of security I was convicted of a crime I'm on camera not committing that's physically impossible to commit. The entire er staff violated the rules of professional conduct multiple ways and collectively denied me medical attention and 911 while I had a serious physical injury and instead of internally disciplining there employees the hospital hired lawyers. my primary care doctor says for me to go to another hospital I feel like I have a blood infection Its more then being tired and hungry and hurt but that's not even what I'm super concerned about my Dr can handle that I really feel like the repeated trauma has changed the shape of the end of the bones and they no longer fit. I've had a problem sitting down ( metiforicslly speaking) If my bone moves 7 times a day then when do my 4 weeks of healing begin the thing I don't want to spend another day in the er for no reason for them to tell me there's nothing they can do.... everyone has been saying go to the hospital just by how I move and the look on my face

I'm hoping to brainstorm with someone here about my daughter (13F).
She is 5'6", 120 pounds, white--she's lost 5 pounds in the past 3-4 months and is already quite skinny. She's been complaining about abdominal pain (located 1/2 inch above her belly button and across the whole abdominal area, but has had bouts of localized pain more to the right of her navel) since April and it's worsened in the last 3 months significantly.
It's worse after eating and after any activity (including just walking around). She says the pain feels stabbing/throbbing-like. She is not eating much because she does not feel hungry and complains of a feeling like there is a lump in her throat. Today, she had multiple instances of dizziness/lightheadedness and fell down from it.
She has an extensive medical history, but her current diagnoses are:

1. Epilepsy (since she was 2, more specifically Abnormal Doose Syndrome)
2. Neurogenic Bladder & Bowel Disorder (not Dysfunctional Elimination Syndrome)
3. Raynauds
4. ADHD
5. Sensory Processing Disorder
6. Neuropathy
7. Temperature Regulation Issues
8. Anhidrosis
9. Generalized Anxiety
10. Insomnia (clinically diagnosed)

Additional information on Neurogenic Bladder & Bowel Disorder:
She can void on her own, but her bladder is 2x larger than it should be and she was catheterized for 4 years before she figured out how to void on her own. She still does not have proper sensation and VCUG has shown her bladder does not "respond" when full, but she's figured out how to tell and how to make herself void well enough catheterization is no longer necessary.
Her colon is also 2x larger than it should be with multiple redundencies, but the placement of them would place scar tissue too close to the rectum and would cause a higher chance of blockages and cause the colon to stretch out again. Her internal sphincters do not work properly (for both bladder and bowel). She is on a high regiment of medications and still only eliminates about every other day.
​
Current Medications:

1. Linzess (290mg/daily) for bowels
2. Lactulose (30mg/twice daily) for bowels
3. Bisacodyl (5mg every other day and 10mg on the other days) for bowels
4. MagCalm (magnesium citrate, 4mg/daily) + 32mg/monthly for mini cleanout of bowels (increased to 68mg for full cleanout of bowels)
5. Lamictal (20mg/twice daily) for epilepsy
6. Keppra (1250mg/twice daily) for epilepsy
7. Clonidine (5mg/daily) for insomnia
8. Daily vitamin + iron fortification for children

​
All blood work has come back normal so far:

1. CBC Differential with Platelet
2. Comp. Metabolic Panel (14)
3. Celiac Test--Negative
4. Sed Rate, Westergren
5. CMP14+eGFR
6. TSH+Free T4
7. Lipid Panel
8. Vitamin D, 25-Hydroxy (this was slightly low)
9. t-Transglutaminase (tTG) IgA
10. t-Transglutaminase (tTG) IgG
11. Immunoglobulin A, Qn, Serum
12. C-Reactive Protein, Quant
13. H. Pylori Test--Negative

I know this is a lot of info, but I am open to hearing any ideas. She's in constant pain, it never goes away, just goes from at least a 4 up to 9-10 on the pain scale.
No fevers, no vomiting, no nausea.

Hi everyone,
I hope this is the right place. I've been dealing with health issues since I was 16, so 11 years (now 27F), and I'm feeling at a loss. I struggle with chronic fatigue, constant dehydration no matter how much water I drink I just pee it out, daily headaches, joint and muscle pain, migraines caused by too much screen time, eating the wrong thing, or weather changes, pain in my knees and lower back, hand pain and occasional neuropathy.
At 16, a doctor thought I may have Fibromyalgia, so I was put on Lyrica for a few months. But that was detrimental to my mental health and did not help, so I went off it. From there I did tons of tests for arthritis, autoimmune diseases, infections, xrays, MRIs... Eventually at 19 I tested for Lyme Disease and Anaplasmosis, (with a white blood cell count test) and was put on antibiotics for 3 months. I was already experiencing food sensitivities and had decided to cut out gluten, so I also did an allergy test and had a reaction to just about everything. After the antibiotics my system was of course wrecked. I was told my Lyme was in omission so I thought I was okay and went about my life. But I always felt like crap. From 21 to 24 I drank very heavily and did not take care of myself, though I still mostly stayed away from the foods I knew bothered me (gluten, soy and dairy). I slowed down on drinking but still had my heavy episodes until I was 25, when I decided to quit and have been sober for the last year and a half. I definitely think I damaged my body in those few short years because I feel worse every year.
I have been checked for lupus, arthritis, sjogren's syndrome, MS, diabetes, thyroiditis... I've had xrays done of my back and knees that came back normal and a comprehensive MRI of my brain that came back normal. I don't have noticeable inflammation so the doctors don't think it's arthritis. I saw a LLMD to see if it was still Lyme, and I was on a regimen for 2 years of sporadic antibiotics and herbal remedies, and many medications I don't think I should have been prescribed (gabapentin, lamictal, famotadine and many more..). I've been medication free for about a year and see a regular therapist to work through my anxiety and depression, and PTSD from my traumatic childhood.
I'm sorry, I know this is SO long at this point but can anyone relate or have any recommendations?? One naturopathic doctor tested my thyroid levels and diagnosed me with hashimotos (which runs in the family), but only my TPO came back abnormal (high of 140). Other doctors don't take that diagnosis seriously though because my TSH, T3 and T4 numbers are considered normal. Other recent bloodwork showed that my A/G ration is slightly high, my WBC esterase is abnormal with a trace, my ketones are a trace abnormal, I tested high for EBC, my RDW is slightly low, and my complement C4, serum test came back slightly low.
Bless you if you read this far <3

I posted a few days ago about Nardils only partial/cyclothymic effects for me. thanks for everyones helpful ideas.
I'm back in a phase of Nardil (somewhat) "working" for my mood, but my anxiety in the evenings is still off the charts. it's almost certainly a deficiency in GABA functioning, as even a half Ativan will mostly knock it out for a few hours.
the result is a constant barrage of intrusive thoughts / "panic signals", beginning in the late afternoon and worsening until bedtime. the muscles in my diaphragm and up thru my neck and head instinctively clench up during these anxiety attacks, exacerbating my already bad chronic headaches. it also feels like the musculature in the base of my skull is pinching off viral nerves going to go thru my neck. obviously this is a subjective feeling and may not be what's actually happening, but it's scary anyway. I'm worried about long term nerve damage (I already have some occasionally bad neuropathy from a bad case of Long Covid).
despite lots of augments/supps/etc. I've been on, nothing seems to mitigate this. see partial list below.
I'm desperate as hell, I don't know how much longer I can abide this. doctors have been useless. I really appreciate any ideas.
meds: gabapentin, lamictal, LDN, aripiprazole, quetiapine, olanzapine (I also stopped taking modafinil in case it was contributing - no help)
supplements: lithium orotate, l-tryptohan, l-theanine, lavender, lemon balm
behavioral: deep breathing, meditation
other stuff: cannibis, CBD

My smoking history is as follows 14-18 occasionally 18-33 never 33-34 occasionally 34-39 routinely
When I was 34 I started consuming cannabis to get me off the 14 different meds my drs had me on for MS & it’s side effects ( depression, anxiety, muscular, neuropathy) Successfully, over a year I was able to get off all rxs and living a much healthier life. I lost over 100 lbs and I was much more active. A genuine better quality of life overall. One night when I was 37, I started freaking out after smoking. I thought, along with others, it was just paranoia. My fight or flight would kick in overdrive and I had to find a way out. I felt like I was going to pass out. I started losing my hearing and things would start to fade out. This happened multiple times when I consumed so I started going to the doctor about it. I live in a mmj friendly state but some doctors do not care for it. My doctor kept saying it was anxiety which I said it was not. I was not diagnosed with anxiety nor had anxiety until I was 33 due to a death. This felt nothing like anxiety. After 2 years of doctors, I was finally in diagnosed with epilepsy. The neurologist said my eeg was showing flares off of a part of my brain that were taking me to a grand mal seizure, staying there for a a few minutes, and then falling off. I started a medicine called Lamictal and slowly tritated up to 200mg 2x a day. I’ve fallen back into depression which I’m on duloxetine for now. I’ve gained all of my weight back. My MS flare ups are back and frequent. I sleep all day until it’s time for work which I’ve cut back on to being only part time. Come home eat and back to bed. I know I need to be more active but my body hurts. I can barely walk on some days due to my legs or feet or back or all at the same time. I’ve been taking kratom for pain but sometimes I worry about that. I don’t know if this is the right place to post this as this is my first ever Reddit post. Doctors will just tell me to not do it. No reasoning, just don’t do it and I will not have a seizure, simple as that. I just want my quality of life back.
Thoughts?

I have been on 400mg of Lamictal for years. I have treatment resistant depression. I called my psychiatrist who said ketamine may be an option (affordability is major barrier). I am considering ketamine (IV or Spravato if I have to), have had a consultation w/ an anesthesiologist re: infusions. I am told the infusions are generally more effective than Spravato, but they are $500 each for 1 hour. I also have Chronic pain and small fiber neuropathy (which if ketamine helps w/ pain that'd be awesome but told to not expect major improvement w/ dosage provided at level that treats depression. Spravato may be semi-affordable but my doc is not a Spravato 'approved site' and I was told it is not nearly as effective. I can skip Lamictal for 12 hr before and 12 hr after infusion of ketamine max per psychiatrist. My PubMed search gave me some inconclusive results.
From my understanding, being on some of below medications may reduce the the benefit d/t something about glutamate receptors (explained to me as - for depressed patients, they want them to dissociate as that provides the benefit of processing unresolved issues and gives them insight to help w/ therapy)? My goal is to get back to a level where I can at least function in society and hopefully get and keep a job to get out of my parent's house since I'm in my late 20's.
Diagnoses: Autism Spectrum Disorder ADHD, primary inattentive type Major Depression, recurrent, severe w/o psychotic features GAD
Current tx: Lamictal 400mg Wellbutrin XL (most effective of them all) Dexedrine ER for the past >10 years Benzodiazepine with long half-life for 10 years Pregabalin for 1 year Opioid > 50 MME for > 5 years at same dose still effective
Prior tx: Tried pretty much everything but MAOI's
TLDR: Main Question: Does being on chronic Lamictal specifically, or some of the above medications significantly reduce or inhibit the benefits of Ketamine for Treatment resistant depression? I am trying to justify the cost/benefit ratio. I will bring up the issue again at next appt with psychiatrist
Thank you for reading this.

This happened years ago and I have some questions about future implications
​

• I'm a white female, was 25/5'5/235lbs.
• I took 800mg gabapentin 2/day, 40mg propranolol, 400mg lamictal
• I have compressed nerves in my lower back, causing back pain and peripheral neuropathy. I also have anxiety, depression, and panic attacks. I also have migraines and a fast heartrate, along with heart palpitations which were all 3 treated by propranolol
• I smoked half a pack a day, I have extremely rarely smoked weed. I had gone 2 years without smoking at all.

​
In 2017, I was having a bad day and was convinced to smoke. I took a single hit off of someone else's pipe. It was weed from a proper dispensary, whereas my past few experiences had been crappy homegrown stuff smoked out of an apple.
That single hit started on me at about 3 seconds. I felt my heartrate increase so I decided to just go lie in my bed. I laid there for a couple hours trying to sleep, but I was having weird physical symptoms - time felt choppy although I didn't feel mentally high, my heart rate kept going nuts, I was having constant heart palpitations. I absolutely did not feel reassured by that, but I just went and laid back down for the next 5 hours trying to pretend I didn't exist.
Now, my understanding is that my experience is something that everyone who smokes has dealt with. I'm okay with that. My question is this: is this something that is going to happen from now on? I'm terrified of this happening again. Is it possible that my medications somehow interfered? I have chronic pain that has very suddenly increased so I'm considering trying to smoke/use edibles again
I'm not really sure if this question has an answer, but I figured that I might as well try.

NTSB Preliminary Narrative

HISTORY OF FLIGHTOn December 12, 2020, about 1249 central standard time, a Beech V35A, N5470U, was destroyed when it was involved in an accident near Attalla, Alabama. The airline transport pilot was fatally injured. The airplane was operated as a Title 14?Code of Federal Regulations Part 91 personal flight.
The pilot was flying from Kyle-Oakley Field Airport (CEY), Murray, Kentucky, to Merritt Island Airport (COI), Merritt Island, Florida. According to Federal Aviation Administration (FAA) audio recordings and Automatic Dependent Surveillance-Broadcast (ADS-B) data, the flight departed CEY under visual flight rules about 1131, and shortly after takeoff the pilot contacted Memphis Air Route Traffic Control Center to obtain his instrument flight rules clearance. The flight was radar identified as being 2 miles south of CEY and was cleared to climb to 9,000 ft mean sea level (msl). The flight remained on a southerly heading until about 1133, then turned left to a southeasterly heading. Air traffic control communications were transferred to several air traffic control facilities appropriate for the route of flight as the flight climbed to about 9,000 ft msl.
At 1236:35, the pilot established contact with Birmingham Air Traffic Control Tower and the controller issued the current altimeter setting. The flight remained on the southeasterly heading and altitude until 1248:09, when the airplane began a right descending turn that was not directed by the controller or announced by the pilot. At 1248:41, while flying about 7,000 ft msl the controller broadcast the call sign of the airplane and the pilot immediately replied, “yeah im with you im” but the rest of the comment was unintelligible. The airplane completed a 360° right turn and at 1248:47, while flying about 5,500 ft msl, the airplane continued the right descending turn with the radius of turn becoming smaller. The controller broadcast that radar contact was lost but the pilot did not reply. The last ADS-B target at 1248:54 recorded the airplane over a wooded area at about 3,600 ft msl. The airplane impacted an open field about 1,260 ft northeast from the last ADS-B location. Review of ADS-B data revealed that in the minute before the airplane began the right descending turn (between 1247:09 and 1248:09), the airplane travelled about 15,198 ft resulting in a calculated average groundspeed of about 173 mph. The barometric altitude at the last ADS-B target was 3,575 ft, which would have been above the floor of the overcast ceiling. PERSONNEL INFORMATIONThe pilot held a statement of demonstrated ability for his lower left leg that was amputated below the knee following a motorcycle accident in 2004. He reported 13,299 hours total time and 33 hours in the last 6 months as of his last 2nd class medical examination dated December 4, 2018. A review of excerpts of his pilot logbook that begins with an entry dated August 17, 2017, to the last entry dated August 1, 2020, revealed he logged about 109 hours, all of which were in the accident airplane. His last flight review and instrument proficiency check (IPC) were completed on December 7, 2019. Correlating his total flight time reported on his last medical with the logged entries after that date revealed his total time was about 13,340 hours. He did not log any instrument approaches, holding, or navigating after his IPC. Individuals who interacted with the pilot before his departure on the accident flight reported nothing abnormal about their interactions. AIRCRAFT INFORMATIONThe pilot had owned the airplane since September 2010. The airplane was equipped in part with a Garmin G5 and an Apple iPad. Both were retained by the National Transportation Safety Board (NTSB), but no data were able to be obtained from either unit.
Before departure, 3.1 gallons of 100LL were added to the left fuel tank which filled it; the right fuel tank was full. According to the airport manager, there were no fuel related issues from any other airplanes fueled from the same fuel source.
Prior to departing from CEY, maintenance personnel serviced the nose and main landing gear, and replaced a Dzus fastener for the engine cowling. No other maintenance was performed at CEY. METEOROLOGICAL INFORMATIONThe pilot did not request a flight service weather briefing. A search of archived ForeFlight information indicated that he did request and receive weather information from ForeFlight at 1049. The 1049 weather information contained all the official National Weather Service aviation forecast information for the route of flight. In addition, the pilot requested and viewed other weather imagery at 0809 to 0811on December 12th and viewed additional weather imagery on December 10th and 11th. There is no record of the accident pilot receiving or retrieving any other weather information before or during the accident flight.
The complete Rawinsonde Observation Program (RAOB) indicated cloud cover between 1,500 and 11,000 ft msl. The RAOB did indicate the possibility of light to moderate clear air turbulence in several layers between the surface and 14,000 ft msl. At the aircraft’s altitude near 9,000 ft msl around 1248, the wind was from 243° at 50 knots. Based on the brightness temperatures (about 272 Kelvin) above the accident site and the vertical temperature profile provided by the 1300 High-Resolution Rapid Refresh (HRRR) sounding, the approximate cloud-top heights over the accident site were 13,000 ft above msl at 1250.
The Huntsville, Alabama weather surveillance radar (WSR-88D) base reflectivity images for the 0.9° elevation scans initiated at 1228:49, 1238:01, 1247:14, and 1251:50, revealed reflectivity values between 5 and 15 dBZ above the accident site at the accident time with the precipitation near the accident site expanding in spatial coverage.
There were no convective or non-convective Significant Meteorological Information (SIGMET) advisories valid for the accident site at the accident time. AIRPORT INFORMATIONThe pilot had owned the airplane since September 2010. The airplane was equipped in part with a Garmin G5 and an Apple iPad. Both were retained by the National Transportation Safety Board (NTSB), but no data were able to be obtained from either unit.
Before departure, 3.1 gallons of 100LL were added to the left fuel tank which filled it; the right fuel tank was full. According to the airport manager, there were no fuel related issues from any other airplanes fueled from the same fuel source.
Prior to departing from CEY, maintenance personnel serviced the nose and main landing gear, and replaced a Dzus fastener for the engine cowling. No other maintenance was performed at CEY. WRECKAGE AND IMPACT INFORMATIONDocumentation of the accident site and wreckage was performed by a representative of Textron Aviation with FAA oversight. According to the FAA inspector, none of the observed items exhibited any evidence of in-flight or postcrash fire.
Examination of the accident site revealed wreckage was scattered in an open field for about 535 ft along an energy path of about 100° true. The airplane was heavily fragmented with the largest pieces consisting of sections of the wings, and empennage. The major structural and flight control pieces were identified, and their location documented.
The left wing was fragmented in three main pieces while the right wing was fragmented in two pieces. The left flap was retracted as evidenced by the flap actuator while the right flap actuator was not located. No blockage was noted in the pitot tube opening. The flaps and aileron flight control surfaces of both wings were either attached or accounted for.
Examination of the wreckage revealed both stabilizers were structurally separated from the empennage and both elevators were separated from each stabilizer.
Examination of the flight controls for pitch revealed the cockpit portions of the cables were in multiple pieces and all cable separations exhibited signatures consistent with tension overload. The turnbuckle eye, part number (P/N) AN165-22RL, of the “up” elevator control cable located in the aft portion of the empennage near the control surface and the fork of the “down” elevator control cable in the cockpit were fractured. Examination of the flight controls for roll revealed that the right aileron primary “up” control cable remained attached to the chain in the cockpit and at the bellcrank near the control surface, but the cable terminal was fractured near the turnbuckle outside of the safety wire wrap on the aileron side of the turnbuckle. Further examination of the flight controls for roll and yaw revealed no evidence of preimpact failure or malfunction. Sections of the “up” and “down” elevator control cables and the right aileron primary control cable were retained for examination by the NTSB Materials Laboratory.
According to the NTSB Materials Laboratory factual report, the fork of the “down” elevator cable and the terminal end of the right aileron primary control cable exhibited overstress fracture, while the turnbuckle eye of the “up” elevator cable exhibited fatigue on about 15% of the cross section of the surface; the remainder of the fracture surface displayed features consistent with overstress separation. The fatigue crack striations were oriented perpendicular to the longitudinal direction of the surface edge consistent with inward crack growth. The report also indicated that there were multiple parallel cracks on the outside surface of the terminal end. Elevated amounts of sodium, chlorine, and sulfur, consistent with constituents in salts corrosive to steel were noted. In addition, some cadmium was present in the oxide, consistent with the end having been coated with cadmium. A cross section of the cylindrical surface of the terminal end appeared to be rough and uneven, consistent with exposure to corrosive attack.
Examination of the left stabilizer revealed it was full span and the inboard portion aft of the main spar was twisted down about 90°. Examination of the fracture surfaces of the forward and aft spars revealed no evidence of preimpact failure or malfunction. The forward spar was twisted. The left elevator was fractured into multiple pieces; the tip was not located. The outboard and middle hinge structure were pulled out of the left elevator and were attached through the hinge point to the left stabilizer, while the torque fitting was structurally separated and not located. The left elevator tab assembly was separated from the elevator but the full span of the elevator tab assembly was accounted for. A section of control cable remained attached the tab assembly. The hinge remained attached to the tab and had evidence of being pulled out of the skin.
Examination of the right stabilizer revealed it was full span and compression wrinkles were noted in the upper skin from about midspan inboard. Examination of the fracture surfaces of the forward and aft spars revealed no evidence of preimpact failure or malfunction. The stabilizer forward spar was twisted, and the outboard hinge normally attached to the aft spar was structurally separated. The middle hinge was fractured consistent with overload fracture, and the torque fitting was structurally separated and not located. The right elevator was also fractured into multiple pieces. The right elevator tab assembly was separated from the elevator, but the full span of the elevator tab assembly was accounted for. A section of control cable remained attached the tab assembly. The right elevator tab hinge remained attached to the tab and its rivets had torn through the elevator skin.
Examination of the elevators revealed no evidence of overtravel of either elevator in either direction based on examination of the hinges. Further inspection of the four elevator stops revealed no evidence of abnormal contact/impact signatures. The ruddervator trim tab actuator was between 5° and 10° tab trailing edge up (nose down). Examination of the engine revealed extensive impact damage which precluded rotation of the crankshaft. Borescope inspection of all cylinders revealed the positions of the pistons relative to each other were in a normal pattern consistent with an intact crankshaft, and all valves were normal with no discrepancies noted. The camshaft was visually inspected with no discrepancies noted. Visual inspection of the valve train revealed no discrepancies. Examination of the air induction, ignition, fuel metering, lubrication, and exhaust systems revealed no evidence of preimpact failure or malfunction. Examination of the propeller revealed 2 blades were fully in the propeller hub and the other 2 blades (top) were displaced aft and partially attached. The propeller hub for both top blades were broken in that area. All blades exhibited evidence of chordwise or spanwise scratches on the cambered side of the blade. There was no evidence of preimpact failure or malfunction of the propeller assembly. MEDICAL AND PATHOLOGICAL INFORMATIONAn autopsy was not performed.
Toxicology testing on specimens of the pilot was performed by the laboratory at FAA Forensic Sciences, Oklahoma City, Oklahoma. The toxicology report indicated no ethanol was detected in the muscle specimen, while an unquantified amount of lamotrigine was detected in the muscle specimen.
According to the NTSB Medical Factual Report, records from the pilot’s primary physician for the 3 years preceding the accident were requested; records from a single visit in December 2019 were provided and reviewed. According to the records, the pilot had a history of prostate cancer, macular degeneration, and phantom limb pain from his amputation. According to these records, the pilot’s usual medications included tamsulosin and lamotrigine.
Lamotrigine, often marketed with the name Lamictal, is approved for adjunctive treatment of epilepsy. Not uncommonly, it is used off-label for the treatment of neuropathy. Side effects include the potential for dizziness, tremors, somnolence, balance disorders, depression/suicidality, rash, and cardiac arrhythmias. TESTS AND RESEARCHNTSB review of over 53 years of airframe maintenance records revealed no entry indicating replacement of the up elevator control cable PN NAS304-35-2087 or turnbuckle eye P/N AN165-22RL associated with the up elevator control cable. The airplane’s most recent annual inspection was completed on May 1, 2020. The airframe maintenance log documenting that inspection noted, in part, “Inspected all flight controls and surfaces…” and “CW AD 2019-CE-036 replaced RH aileron control cable…” The airplane total time was 4,804.8 hours on the last entry dated December 12, 2020.
According to the airplane Shop Manual that outlined 100-Hour or Annual inspection items, with respect to the rear fuselage/empennage, which was the location of the fatigue fractured turnbuckle eye, a check of the flight control cables, pulleys and associated equipment for condition, attachment, alignment, clearance, and proper operation was specified. The manual did not contain a focused inspection of the turnbuckle eye for wear of the cadmium coating or for cracks on the outer surface in the area of the turnbuckle.
In January 2012, Hawker Beechcraft Corporation, the previous holder of the aircraft’s type certificate, issued Safety Communique 322 with the subject, “Flight Control Cable System Inspections.” The Safety Communique stated, in part, “Hawker Beechcraft Corporation (HBC) is issuing this Safety Communiqué to remind owners/operators of the importance of adhering to existing inspection procedures in the applicable Maintenance or Shop Manuals. Improper flight control cable system inspection for the airplanes defined in the MODELS section may result in undetected wear of the flight control cables.” The MODELS section included all piston aircraft. In July 2019, Textron Aviation, Inc., the current holder of the aircraft’s type certificate, issued Safety Communique 346 which stated, in part, “Gaining access and conducting thorough inspections on all sections of flight control cables and all turnbuckles should be an important part of completing periodic inspections.” Additionally, the Safety Communique included a copy of FAA Special Airworthiness Information Bulletin (SAIB) CE-19-13 (dated July 2, 2019) which discussed cracking and fracturing of flight control cable terminal attachment fittings in 14 CFR Part 23 and CAR part 3 airplanes with mechanical flight control cables. While the primary focus of the SAIB was terminal ends that are threaded into turnbuckles it stated, “Carefully examine all cable terminal fittings that attach to all turnbuckles for corrosion and/or cracking (in addition to inspecting the turnbuckles and the entire length of the cables as you normally would).” It also stated, “If any sign of corrosion, pitting or cracking is present on any fitting, replacement of the associated fitting and/or cable assembly is recommended.”
A review of 7 years of FAA Service Difficulty Report data revealed no reports for the fatigue fractured turnbuckle eye, PN AN165-22RL which was part of the “up” elevator control cable, or for the Beech Bonanza Elevator Flight Control Cable PN NAS304-35-2087.

Aircraft and OwneOperator Information

Category	Data	Category	Data
Aircraft Make:	BEECH	Registration:	N5470U
Model/Series:	V35A / NO SERIES	Aircraft Category:	AIR
Amateur Built:	N

Meteorological Information and Flight Plan

Category	Data	Category	Data
Conditions at Accident Site:	IMC	Condition of Light:	DAYL
Observation Facility, Elevation:	KGAD, 569 ft MSL	Observation Time:	1256
Distance from Accident Site:	7 nautical miles	Temperature/Dew Point:	61°F / 59°F
Lowest Cloud Condition:	0 ft AGL	Wind Speed/Gusts, Direction:	5 / 0 knots, 210°
Lowest Ceiling:	OVC / 1100 ft AGL	Visibility:	5 statute miles
Altimeter Setting:	29.94 inches Hg	Type of Flight Plan Filed:	IFR
Departure Point:	Kyle-Oakley Field Airport Murray, KY, USA	Destination:	Merritt Island Airport Merritt Island, FL, USA
METAR:	KGAD 121856Z AUTO 21005KT 5SM -RA BR OVC011 16/15 A2994 RMK AO2 RAE28B47 SLP141 P0000 T01610150

Wreckage and Impact Information

Category	Data	Category	Data
Crew Injuries:	1 Fatal	Aircraft Damage:	DEST
Passenger Injuries:		Aircraft Fire:
Ground Injuries:		Aircraft Explosion:
Total Injuries:	1 Fatal	Latitude, Longitude:	034535N, 0086512W

Generated by NTSB Bot Mk. 5
The docket, full report, and other information for this event can be found by searching the NTSB's Query Tool, CAROL (Case Analysis and Reporting Online), with the NTSB Number ERA21LA068

About 2 months ago, bad weather increasing CRPS symptoms lead to a week where I was going through pretty bad insomnia. Friday night comes along, and I'm finally able to fall asleep at around 4 am. About 2 and a half hours later I start having seizures. ER docs were incompetent. Attending sees PTSD and without an EEG tells me these are psychosomatic non-epileptic seizures and sends me on my way. Ended up having 25-30 seizures over about 36 hours while awake and asleep.
When I'm able to get in to see my neurologist, I'm started on Lamictal as the symptoms from my recollection and the 2 witness statements all coincide with them being neurologic not psychosomatic, with a connection to a lack of sleep (a known trigger for those with epilepsy/seizure disorders). She sends me to a neurologist who specializes in sleep medicine to assist in the seizure diagnostic portion and to treat the sleep issues stemming from a stroke/TBI and CRPS's lack of REM sleep and sleep disturbances.
I went from feeling dismissed and unheard by the ER docs to being so grateful I have a good neurologist. She admitted right off the bat at my first visit 2 years ago she doesn't treat CRPS herself and has a fundamental understanding of it from her education and clinical studies, but she's more than happy to help me in what ways she can as a whole. Coming back to her with the sudden seizures lead her to pick a medication that's inadvertently helped me sleep better, reduced the buzzing sensation in my legs from anemic peripheral neuropathy to near zero, and reduced the intensity of the CRPS pins and needles. The sleep specialist had no problems prescribing a newer insomnia med that works differently that most at the first visit. It helps you fall asleep, stay asleep, get back to sleep much more quickly waking up at night, and has evidence it promotes more REM sleep. All in all this initial interdisciplinary approach she's taking is not only helping the seizures, but it's helping the CRPS stabilize and not get aggravated by them.
I hate that the seizures are another scary plate to juggle with everything else while living alone for the time being. There's so many things I have to limit on top of my normal physical limitations for safety since my seizures are drop attack/going limp like you're paralyzed type. Too many docs in the past have dropped the ball, including other recommended sleep specialists because I was too complex of a case for them to want to deal with. It makes me so frustrated that it took 30 years and damn seizures to find a neurologist and a sleep specialist who understood what a severe TBI, PTSD, and CRPS can do to sleep, and how that lack of sleep can snowball into other issues. There's such a sense of relief though that comes with my PM, psych, neurologist, and sleep specialist all working together nicely in managing tests, referrals, and treatment without one throwing a fit over a medication or wanting to run the same test again for themselves. It's lifted a lot of weight off my shoulders now that I'm physically recovering from lingering effects of the seizures, getting better sleep that's breaking the CRPS painsomnia cycle, able to manage my CRPS better on a day to day basis, and have some additional bonus reductions of neuropathic symptoms.
Now all that's left is the waiting game to get into an epilepsy clinic for figuring out the specific diagnosis and type.

I haven't been diagnosed with anything really besides symptoms but I've not been okay for about 2-3 years. It stated 3/2020 I had some abdominal pain and was given Ciprofloxacin and metronidazole for a suspected bladder infection. Took for a week. Did not help the first problem at all. About halfway through the week I didn't feel right but just thought I was sick so kept taking it. By the end I was tendon pain and bent over to pick something up and herniated a disk. I'm 35 btw. I had twitching in my calf thigh and butt which was probably from sciatica. Went to doc was given a cortico steroid about 2 or 3 days after the back and tendon pain started. It was already hard to walk but when taking the cortico steroid everything got much worse and kept getting worse over the next few months. All my joints started cracking and my hip hurt worse than my back. Even my nose cracks if I rub it. I was completely disabled. I couldn't even click a computer mouse. Every movement intensified the pain. I had peripheral neuropathy in my hands and feet. Like a million needles stabbing me. The hospital did x-ray didn't see anything and wouldn't do MRI and kicked me out. Neurologist saw me and saw me and said I probably just could walk from the pain. EMG showed normal. I screamed in pain and was given an antipsychotic Seroquel just to sleep. I started twitching after a few weeks taking that and I threw them away. twitching subsided but I had some twitching and buzzing around my right achilles tendon every now and then. I also feel this in my abdomen sometimes. Does anybody have a buzzing vibrating feeling? I went to another ER and they at least diagnosed tendonitis and gave me a pain med while I was there. I found a chiropractor willing to do an MRI of my back and said I had degenerative disk disease. Anyway went to physical therapy and it took me about 5 months to get out of the wheelchair and slowly start walking again. Still in a good deal of pain but limping around so I was grateful. At about a year and a half I felt like I had reached peak recovery. All my joints still cracked and hurt and some slight calf tendon twitches but a lot better. Tendons still stiff when I wake up sometimes. I had a lot of time to research and figure out what happened to me. Fluoroquinolone toxicity. And learned you're not supposed to take a cortico steroid with it. While I didn't at the same time it was still in my system. I had some drs say Cipro might give you some tendon pain for a few days. One told me straight up an antibiotic cant hurt you and i had to learn myself that the drug doesnt kill bacteria it hurts you (your mitochondria) so they can't reproduce. I got 0 help and was hurt more. Anyway as time went by I thought I could live with the pain and have some kind of life again. But I still had abdominal pain and I started to have blood in my stool. So I went to the Dr and she tried to give me another fluoroquinolone, levaquin I said no isn't there something else for abdominal pain and they said metronidazole. I was scared since I took both that too but I thought ok it must've just been the fluoroquinolone so I'll take it again. That's when the small twitches set off all over my body constantly. Not helping the abdominal pain again. It took about three months for them to die down. At this point they weren't in my face yet. I went to another Dr. An actual gastroenterologist and was given amitriptyline. Well I seemed ok for the first two weeks until my eyelid started twitching but I kept taking it with hopes it would go away and kick in so the pain would go away. It just increased so at 1 month I quit taking it and the muscle twitches set off all over my body again constantly. This time in the face. Tightness in my cheeks, tongue twitching. Lips eyelids. Nose. Scalp just about every other muscle my foot clenched up incredibly pain curled toes I couldn't open it. Thats when I first started feeling the jerks mostly in my neck back and shoulders. The neuropathy started to come back some in the feet and hands and I had light sensitivity for a few days. Of course primary care thinks I'm crazy and says amitriptyline treats neuropathy so it couldn't have made that come back. Well it took another three months before they started to die down again. Worm and popcorn feelings mostly in my feet and calves we're still pretty constant and some other places randomly but not in my face so I should be happy. Well seeing as no one believes me and either won't do test or what test are done show normal. And I keep getting hurt by pharmaceutical I had the great idea to self medicate with a new hemp derivative. Delta 8 THC edibles since it was legal and available and I have lung scarring and pain since getting sick from pneumonia or bronchitis or something about 6 years ago and can't smoke now. At first it really did help with the pain and depression and anxiety. Then the store didn't have the brand I was using and he said these were really good. I should've known better from that. Either these were laced with some other synthetic or the dose was way off or the changes the amitriptyline made to my brain did something horrible. I had extreme anxiety. Twitching increased and I started hallucinating. The LEDs on my TV started moving around and I tried to go to sleep having all kinds of closed eye visuals and intrusive thoughts. It was like a bad trip on mushrooms which I hadn't taken for like 15 years. I was stuck in a half awake trance like state and woken up by a auditory hallucination that sounded like my dad saying not this time son. Well I finally got to sleep and woke up still shaking like a Chihuahua like I was cold. Muscles still going crazy. But I never heard another auditory hallucination but a week later I started noticing lights and colors were really bright and corners of walls started breathing and words started swaying. I got palinopsia. After images of everything. I had an LED leave an after image in my vision for almost two weeks. Tinnitus. Tracers/trailing and a lot of floaters. I started having big jerks like I was being electrocuted when I was falling asleep. I couldn't function from the anxiety so I tried to get help again. Was put in outpatient psychiatric care for two weeks where they diagnosed me schizophrenic. At this point I had done my research and I did not think I was. I knew it wasn't real and I had no delusions or voices except that one when I was on the substance. So I came across HPPD and it is known antidepressants and antipsychotics can make it worse so I didn't take the drugs I was offered and my vision started to get better after a few months. Still I found a psychologist who also did not think I had schizophrenia and agreed it was HPPD. I was able to get 1 month of clonazapam which helped the anxiety, twitching, jerks and hypnogogic jerks but of course that one thing that helped and didn't cause any side effects is addictive so I was still not happy my vision hadn't gone back to the way so I tried lamictal. My anxiety and twitches and jerks increased after 4 other 5 days. My ring finger started shaking back and forth constantly. Took about 3 months to die down again. I cleaned a bathroom with bleach which irritated my lungs and they hurt pretty bad for a couple months so I took naproxen for a few weeks until I got heartburn and started burping a lot. Alcohol did help the twitching but now my stomach is messed up and it takes 4-6 beers at least and it doesn't last long and the side effects last even longer. Right when I felt the twitching starting to die down again I took Omeprazole and my anxiety and twitching got worse so I'm afraid to keep taking that. Oh my toenails turned purple and are sore and my limbs fall asleep easy ever since the floxicity. Especially my right hand and foot for some reason. It just feels so hopeless. Everything hurts me more and if it doesn't it might as well be illegal. I'm gonna post in floxed and see if anyone can relate I just have so many symptoms that cover so many things so sorry if this is a bad place. I've tried so many vitamins and supplements. Thanks for reading I just felt like I needed to vent. Idk where to go or what to do. Problems go back to when I started getting itchy bumps on me then my lungs. Then everything else. I feel cursed.

First does anybody have small jerks of their neck or back stomach legs arms along with the the small twitches that feel like works or popcorn pooping? I haven't been diagnosed with anything really besides symptoms but I've not been okay for about 2-3 years. It stated 3/2020 I had some abdominal pain and was given Ciprofloxacin and metronidazole for a suspected bladder infection. Took for a week. Did not help the first problem at all. About halfway through the week I didn't feel right but just thought I was sick so kept taking it. By the end I was tendon pain and bent over to pick something up and herniated a disk. I'm 35 btw. I had twitching in my calf thigh and butt which was probably from sciatica. Went to doc was given a cortico steroid about 2 or 3 days after the back and tendon pain started. It was already hard to walk but when taking the cortico steroid everything got much worse and kept getting worse over the next few months. All my joints started cracking and my hip hurt worse than my back. Even my nose cracks if I rub it. I was completely disabled. I couldn't even click a computer mouse. Every movement intensified the pain. I had peripheral neuropathy in my hands and feet. Like a million needles stabbing me. The hospital did x-ray didn't see anything and wouldn't do MRI and kicked me out. Neurologist saw me and saw me and said I probably just could walk from the pain. EMG showed normal. I screamed in pain and was given an antipsychotic Seroquel just to sleep. I started twitching after a few weeks taking that and I threw them away. twitching subsided but I had some twitching and buzzing around my right achilles tendon every now and then. I also feel this in my abdomen sometimes. Does anybody have a buzzing vibrating feeling? I went to another ER and they at least diagnosed tendonitis and gave me a pain med while I was there. I found a chiropractor willing to do an MRI of my back and said I had degenerative disk disease. Anyway went to physical therapy and it took me about 5 months to get out of the wheelchair and slowly start walking again. Still in a good deal of pain but limping around so I was grateful. At about a year and a half I felt like I had reached peak recovery. All my joints still cracked and hurt and some slight calf tendon twitches but a lot better. Tendons still stiff when I wake up sometimes. I had a lot of time to research and figure out what happened to me. Fluoroquinolone toxicity. And learned you're not supposed to take a cortico steroid with it. While I didn't at the same time it was still in my system. I had some drs say Cipro might give you some tendon pain for a few days. One told me straight up an antibiotic cant hurt you and i had to learn myself that the drug doesnt kill bacteria it hurts you (your mitochondria) so they can't reproduce. I got 0 help and was hurt more. Anyway as time went by I thought I could live with the pain and have some kind of life again. But I still had abdominal pain and I started to have blood in my stool. So I went to the Dr and she tried to give me another fluoroquinolone, levaquin I said no isn't there something else for abdominal pain and they said metronidazole. I was scared since I took both that too but I thought ok it must've just been the fluoroquinolone so I'll take it again. That's when the small twitches set off all over my body constantly. Not helping the abdominal pain again. It took about three months for them to die down. At this point they weren't in my face yet. I went to another Dr. An actual gastroenterologist and was given amitriptyline. Well I seemed ok for the first two weeks until my eyelid started twitching but I kept taking it with hopes it would go away and kick in so the pain would go away. It just increased so at 1 month I quit taking it and the muscle twitches set off all over my body again constantly. This time in the face. Tightness in my cheeks, tongue twitching. Lips eyelids. Nose. Scalp just about every other muscle my foot clenched up incredibly pain curled toes I couldn't open it. Thats when I first started feeling the jerks mostly in my neck back and shoulders. The neuropathy started to come back some in the feet and hands and I had light sensitivity for a few days. Of course primary care thinks I'm crazy and says amitriptyline treats neuropathy so it couldn't have made that come back. Well it took another three months before they started to die down again. Worm and popcorn feelings mostly in my feet and calves we're still pretty constant and some other places randomly but not in my face so I should be happy. Well seeing as no one believes me and either won't do test or what test are done show normal. And I keep getting hurt by pharmaceutical I had the great idea to self medicate with a new hemp derivative. Delta 8 THC edibles since it was legal and available and I have lung scarring and pain since getting sick from pneumonia or bronchitis or something about 6 years ago and can't smoke now. At first it really did help with the pain and depression and anxiety. Then the store didn't have the brand I was using and he said these were really good. I should've known better from that. Either these were laced with some other synthetic or the dose was way off or the changes the amitriptyline made to my brain did something horrible. I had extreme anxiety. Twitching increased and I started hallucinating. The LEDs on my TV started moving around and I tried to go to sleep having all kinds of closed eye visuals and intrusive thoughts. It was like a bad trip on mushrooms which I hadn't taken for like 15 years. I was stuck in a half awake trance like state and woken up by a auditory hallucination that sounded like my dad saying not this time son. Well I finally got to sleep and woke up still shaking like a Chihuahua like I was cold. Muscles still going crazy. But I never heard another auditory hallucination but a week later I started noticing lights and colors were really bright and corners of walls started breathing and words started swaying. I got palinopsia. After images of everything. I had an LED leave an after image in my vision for almost two weeks. Tinnitus. Tracers/trailing and a lot of floaters. I started having big jerks like I was being electrocuted when I was falling asleep. I couldn't function from the anxiety so I tried to get help again. Was put in outpatient psychiatric care for two weeks where they diagnosed me schizophrenic. At this point I had done my research and I did not think I was. I knew it wasn't real and I had no delusions or voices except that one when I was on the substance. So I came across HPPD and it is known antidepressants and antipsychotics can make it worse so I didn't take the drugs I was offered and my vision started to get better after a few months. Still I found a psychologist who also did not think I had schizophrenia and agreed it was HPPD. I was able to get 1 month of clonazapam which helped the anxiety, twitching, jerks and hypnogogic jerks but of course that one thing that helped and didn't cause any side effects is addictive so I was still not happy my vision hadn't gone back to the way so I tried lamictal. My anxiety and twitches and jerks increased after 4 other 5 days. My ring finger started shaking back and forth constantly. Took about 3 months to die down again. I cleaned a bathroom with bleach which irritated my lungs and they hurt pretty bad for a couple months so I took naproxen for a few weeks until I got heartburn and started burping a lot. Alcohol did help the twitching but now my stomach is messed up and it takes 4-6 beers at least and it doesn't last long and the side effects last even longer. Right when I felt the twitching starting to die down again I took Omeprazole and my anxiety and twitching got worse so I'm afraid to keep taking that. Oh my toenails turned purple and are sore and my limbs fall asleep easy ever since the floxicity. Especially my right hand and foot for some reason. It just feels so hopeless. Everything hurts me more and if it doesn't it might as well be illegal. I'm gonna post in floxed and see if anyone can relate I just have so many symptoms that cover so many things so sorry if this is a bad place. I've tried so many vitamins and supplements. Thanks for reading I just felt like I needed to vent. Idk where to go or what to do. Problems go back to when I started getting itchy bumps on me then my lungs. Then everything else. I feel cursed.
TLDR got hurt by fluoroquinolones and many other drugs. Anybody else start twitching after taking a medicine? Anything help or exacerbate it?

Of note: I know this is a lot of medication. I am working to get off of as much as I can. I spoke to a pharmacist yesterday to do a comprehensive review on my medication and if it would be causing anything I am currently dealing with.
I need to know if I should get a second opinion. Of note, I ended up in the ER a week or so ago with sinus tachycardia, palpitations and chest pain as well as an elevated bp. Female, 34, 185lbs. This weight gain happened rapidly between 2019-2020 (about 50lbs) and is impossible to lose and keeps increasing. Prior to the weight gain i was about 135lbs.

• clomipramine (OCD)
• lamictal (trauma/mood)
• cymbalta (neuropathy in leg/interstitial cystitis)
• provigil (severe chronic fatigue syndrome and it also helps my ADD as a plus)
• klonopin (occasional for panic)
• amlodipine (raynauds)
• pantoprazole (reflux due to newly discovered hiatal hernia)
• metformin (insulin resistance and also to keep my a1c out of pre-diabetes range)
• rybelsus (insulin resistance, a1c management, weight loss)
• sulfasalazine (joints and borderline fevers, does not help fevers)
• Humira (joints and borderline fevers, does not help fevers)

February of this year both of my knees started to get hot and red. I started getting borderline fevers daily, multiple times a day. The highest they have gone is 100.4, but they usually peak in cycles at 99.8-100.1. My baseline temperature has gone from the 97s to the 99s. I am getting hot flashes as well. After the hot flashes, I'm hit with a wave of exhaustion like I've never felt with CFS. I am not functioning well. Gynecology already ruled out menopause.Rheumatology tested me and I was positive for hla b27, so it became suspected reactive arthritis. I was put on sulfasalazine with no relief. Then Humira with some malaise relief and joint relief. Nothing has helped the fevers/hot flashes/extreme energy crashes. Went to oncology who looked at all of my xrays after my rheumatologist did (various ones for spine and joints), CT scans (chest abdomen), MRIs (pelvis and spine) and he was unconcerned but was concerned with tachycardia (my heart rate has been in the 120s-130 resting sometimes) that I presented with at his office. He tested catecholamines:

• epinephrine normal
• dopamine 62 pg/ml w range of 0-20
• norepinephrine 749 pg/ml w range of 80-520.

Went to endocrinology. I've now been dealing with endocrinology for a few months and have done multiple sets of cortisol am testing, 24 hour urine midnight salivary cortisol, ACTH and DHEA sulfate testing. What has come back has been super strange: Normal levels for my age: Cortisol AM (4.8-19.5) ACTH (7.2-63.3) DHEA Sulfate (99-340) Midnight Salivary Cortisol: (.007-.115)

• all midnight salivary cortisol tests were high: .391 mcg/dl, .198 mcg/dl, .192 mcg/dl
• My cortisol AM tests have also been weird: the first was low at 2.6 ug/dl, second was 2.6 ug/dl, 3rd was after the dexamethasone suppression test which was .07 ug/dl (very low), the next 2 were normal range, the next was after suppression again and it was .6 ug/dl, the following 2 were normal, but on the lower side of normal (5.4 both times).
• My ACTH has been normal save for after one of the dexamethasone tests where it was <3pg/ml (low). It has been tested a bunch.
• DHEA sulfate came back low (93 ug/dl), then normal 3 more times
• 24 hour urine was fine, except one time I had low creatine and my doctor said it's not accurate

At this point my doctor suggests cyclical cushing's but is unconvinced. She had me at 50/50 chance of it being a proper diagnosis. I then went on to do more testing.

• 4 random salivary cortisol tests throughout one day and they all came back normal
• Catecholamines again epinephrine normal, dopamine at 68 pg/ml and norepinephrine very high at 802 pg/ml
• normetanephrine free plasma at 1.02 nml/L (high, range 0-0.89)
• metanephrine normal

Finally, I was sent for another CT scan to look at my adrenals. Normal.
As mentioned, I recently ended up in the ER with palpitations, sinus tachycardia, chest pain, high bp. The only weird result was low potassium and slight anemia.
She has mentioned pseudo cushings, but I have no idea if that's true. It doesn't seem like it accounts for what's going on. Plus, she told me that the treatment for it is steroids and I absolutely cannot gain any more weight.I really, really would like to know opinions on this matter. I basically can't hold my job. Should I see someone else? Should I go to another specialist? I am in Houston if anybody wants to dm me names. I am happy to show any other information.

I've posted things in the last few months similar to this, but things just keep getting worse and my doctors are extremely uncommunicative. I need to know if I should get a second opinion. Of note, I ended up in the ER a few nights ago with sinus tachycardia, palpitations and chest pain as well as an elevated bp.
Female, 34, 185lbs. This weight gain happened rapidly between 2019-2020 (about 50lbs) and is impossible to lose and keeps increasing. Prior to the weight gain i was about 135lbs.

• clomipramine (OCD)
• lamictal (trauma/mood)
• cymbalta (neuropathy in leg/interstitial cystitis)
• provigil (severe chronic fatigue syndrome and it also helps my ADD as a plus)
• klonopin (occasional for panic)
• amlodipine (raynauds)
• pantoprazole (reflux due to newly discovered hiatal hernia)
• metformin (insulin resistance and also to keep my a1c out of pre-diabetes range)
• rybelsus (insulin resistance, a1c management, weight loss)
• sulfasalazine (joints and borderline fevers, does not help fevers)
• Humira (joints and borderline fevers, does not help fevers)

February of this year both of my knees started to get hot and red. I started getting borderline fevers daily, multiple times a day. The highest they have gone is 100.4, but they usually peak in cycles at 99.8-100.1. My baseline temperature has gone from the 97s to the 99s. I am getting hot flashes as well. After the hot flashes, I'm hit with a wave of exhaustion like I've never felt with CFS. I am not functioning well. Gynecology already ruled out menopause.
Rheumatology tested me and I was positive for hla b27, so it became suspected reactive arthritis. I was put on sulfasalazine with no relief. Then Humira with some malaise relief and joint relief. Nothing has helped the fevers/hot flashes/extreme energy crashes.
Went to oncology who looked at all of my xrays after my rheumatologist did (various ones for spine and joints), CT scans (chest abdomen), MRIs (pelvis and spine) and he was unconcerned but was concerned with tachycardia (my heart rate has been in the 120s-130 resting sometimes) that I presented with at his office. He tested catecholamines:

• epinephrine normal
• dopamine 62 pg/ml w range of 0-20
• norepinephrine 749 pg/ml w range of 80-520.

Went to endocrinology.
I've now been dealing with endocrinology for a few months and have done multiple sets of cortisol am testing, 24 hour urine midnight salivary cortisol, ACTH and DHEA sulfate testing. What has come back has been super strange:
Normal levels for my age:
Cortisol AM (4.8-19.5)
ACTH (7.2-63.3)
DHEA Sulfate (99-340)
Midnight Salivary Cortisol: .007-.115)

• all midnight salivary cortisol tests were high: .391 mcg/dl, .198 mcg/dl, .192 mcg/dl
• My cortisol AM tests have also been weird: the first was low at 2.6 ug/dl, second was 2.6 ug/dl, 3rd was after the dexamethasone suppression test which was .07 ug/dl (very low), the next 2 were normal range, the next was after suppression again and it was .6 ug/dl, the following 2 were normal, but on the lower side of normal (5.4 both times).
• My ACTH has been normal save for after one of the dexamethasone tests where it was <3pg/ml (low). It has been tested a bunch.
• DHEA sulfate came back low (93 ug/dl), then normal 3 more times
• 24 hour urine was fine, except one time I had low creatine and my doctor said it's not accurate

At this point my doctor suggests cyclical cushing's but is unconvinced. She had me at 50/50 chance of it being a proper diagnosis. I then went on to do more testing

• 4 random salivary cortisol tests throughout one day and they all came back normal
• Catecholamines again epinephrine normal, dopamine at 68 pg/ml and norepinephrine very high at 802 pg/ml

Finally, I was sent for another CT scan to look at my adrenals. Normal.
And here I am now, crying because there's no answer and she won't check my pituitary gland without reason to do so. She has mentioned pseudo cushings, but I have no idea if that's true. It doesn't seem like it accounts for what's going on. Plus, she told me that the treatment for it is steroids and I absolutely cannot gain any more weight.
I really, really would like to know opinions on this matter. I basically can't hold my job. Should I see someone else? Should I go to another specialist? I am in Houston if anybody wants to dm me names. I am happy to send over any and all lab work done.

I've posted things in the last few months similar to this, but things just keep getting worse and my doctors are extremely uncommunicative. I need to know if I should get a second opinion. Of note, I ended up in the ER a few nights ago with sinus tachycardia, palpitations and chest pain as well as an elevated bp.
Female, 34, 185lbs. This weight gain happened rapidly between 2019-2020 (about 50lbs) and is impossible to lose and keeps increasing. Prior to the weight gain i was about 135lbs.

• clomipramine (OCD)
• lamictal (trauma/mood)
• cymbalta (neuropathy in leg/interstitial cystitis)
• provigil (severe chronic fatigue syndrome and it also helps my ADD as a plus)
• klonopin (occasional for panic)
• amlodipine (raynauds)
• pantoprazole (reflux due to newly discovered hiatal hernia)
• metformin (insulin resistance and also to keep my a1c out of pre-diabetes range)
• rybelsus (insulin resistance, a1c management, weight loss)
• sulfasalazine (joints and borderline fevers, does not help fevers)
• Humira (joints and borderline fevers, does not help fevers)

February of this year both of my knees started to get hot and red. I started getting borderline fevers daily, multiple times a day. The highest they have gone is 100.4, but they usually peak in cycles at 99.8-100.1. My baseline temperature has gone from the 97s to the 99s. I am getting hot flashes as well. After the hot flashes, I'm hit with a wave of exhaustion like I've never felt with CFS. I am not functioning well. Gynecology already ruled out menopause.
Rheumatology tested me and I was positive for hla b27, so it became suspected reactive arthritis. I was put on sulfasalazine with no relief. Then Humira with some malaise relief and joint relief. Nothing has helped the fevers/hot flashes/extreme energy crashes.
Went to oncology who looked at all of my xrays after my rheumatologist did (various ones for spine and joints), CT scans (chest abdomen), MRIs (pelvis and spine) and he was unconcerned but was concerned with tachycardia (my heart rate has been in the 120s-130 resting sometimes) that I presented with at his office. He tested catecholamines:

• epinephrine normal
• dopamine 62 pg/ml w range of 0-20
• norepinephrine 749 pg/ml w range of 80-520.

Went to endocrinology.
I've now been dealing with endocrinology for a few months and have done multiple sets of cortisol am testing, 24 hour urine midnight salivary cortisol, ACTH and DHEA sulfate testing. What has come back has been super strange:
Normal levels for my age:
Cortisol AM (4.8-19.5)
ACTH (7.2-63.3)
DHEA Sulfate (99-340)
Midnight Salivary Cortisol: .007-.115)

• all midnight salivary cortisol tests were high: .391 mcg/dl, .198 mcg/dl, .192 mcg/dl
• My cortisol AM tests have also been weird: the first was low at 2.6 ug/dl, second was 2.6 ug/dl, 3rd was after the dexamethasone suppression test which was .07 ug/dl (very low), the next 2 were normal range, the next was after suppression again and it was .6 ug/dl, the following 2 were normal, but on the lower side of normal (5.4 both times).
• My ACTH has been normal save for after one of the dexamethasone tests where it was <3pg/ml (low). It has been tested a bunch.
• DHEA sulfate came back low (93 ug/dl), then normal 3 more times
• 24 hour urine was fine, except one time I had low creatine and my doctor said it's not accurate

At this point my doctor suggests cyclical cushing's but is unconvinced. She had me at 50/50 chance of it being a proper diagnosis. I then went on to do more testing

• 4 random salivary cortisol tests throughout one day and they all came back normal
• Catecholamines again epinephrine normal, dopamine at 68 pg/ml and norepinephrine very high at 802 pg/ml

Finally, I was sent for another CT scan to look at my adrenals. Normal.
And here I am now, crying because there's no answer and she won't check my pituitary gland without reason to do so. She has mentioned pseudo cushings, but I have no idea if that's true. It doesn't seem like it accounts for what's going on. Plus, she told me that the treatment for it is steroids and I absolutely cannot gain any more weight.
I really, really would like to know opinions on this matter. I basically can't hold my job. Should I see someone else? Should I go to another specialist? I am in Houston if anybody wants to dm me names. I am happy to send over any and all lab work done.

This is quite long so please bear with me. I am willing to share any and all results of tests that I've had in the last 5 months.
Female, 34, 185lbs. This weight gain happened rapidly between 2019-2020 and is impossible to lose but has plateaued. Prior to the weight gain i was about 135lbs.

• clomipramine (OCD)
• lamictal (trauma/mood)
• cymbalta (neuropathy in leg/interstitial cystitis)
• provigil (severe chronic fatigue syndrome and it also helps my ADD as a plus)
• klonopin (occasional for panic)
• amlodipine (raynauds)
• pantoprazole (reflux due to newly discovered hiatal hernia)
• metformin (insulin resistance and also to keep my a1c out of pre-diabetes range)
• rybelsus (insulin resistance, a1c management, weight loss)
• sulfasalazine (joints and borderline fevers, does not help fevers)
• Humira (joints and borderline fevers, does not help fevers)

February of this year both of my knees started to get hot and red. I started getting borderline fevers daily, multiple times a day. The highest they have gone is 100.4, but they usually peak in cycles at 99.8-100.1. My baseline temperature has gone from the 97s to the 99s. I feel AWFUL. When they peak I sweat a ton and when they go back down I'm hit with a wave of exhaustion like I've never felt with CFS. I can't do my job and I've missed a ton of days/hours covered by FMLA. I'm basically out of PTO so I'm struggling even working remotely.
Rheumatology tested me and I was positive for hla b27, so it became suspected reactive arthritis. I was put on sulfasalazine with no relief. Then Humira with some malaise relief and joint relief. Nothing has helped the fevers.
I have had every rheumatological test done that my doctor can think of as well as a ton of CT scans, MRIs, Xrays and ultrasounds. All were unremarkable save for a small hiatal hernia, a few small lymph notes that do not indicate lymphoma and severe constipation. I was sent to hematology/oncology for more testing.
My heart rate when I went to hem-onc was 120s while resting. I've always had a high heart rate and I also had taken provigil, but my doctor noted tachycardia and wanted to test my catecholamines which came back as:

• epinephrine normal
• dopamine 62 pg/ml w range of 0-20
• norepinephrine 749 pg/ml w range of 80-520.

hem-onc sent me to endocrinologist. Per endo's notes, I have moon face, central obesity, dorsocervical fat pads, facial plethora, striae, chronic excessive fatigue. She thought pituitary due to the borderline fevers and tested me extensively. I've yet to meet with her (will be doing so wednesday) but it looks like in general my levels look something like:

• Cortisol AM 2.6 ug/dl range 4.8-19.5
• Cortisol PM (saliva) .391 ug/dl with the range being " For collection at 2300 hr the normal cortisol concentration is 0.007-0.115 mcg/dL. Patients with Cushing syndrome typically have concentrations of 0.130-2.972 mcg/dL."
• After the dexamethasone, morning after my cortisol levels were .6.

I also did 24 hour urine which I don't quite understand the results of. Happy to share though.
This is long and I'm so sorry, but I am so absolutely miserable and non-functional. I see endo again this week but it's 30 mins via video and my OCD is going insane.
What is happening to me?!
E: clarified that my weight started at 135 and I am now 185