Nortriptyline and diabetes

TL;DR: My PCP now is not comfortable considering my symptoms POTS because of my strange blood pressure changes? Any thoughts or similar experiences
Tilt table results in the image, stayed around 170-184 bpm, BP immediately up to 164/118, down to 115/50 and 99/58. Did not pass out but called it off after losing hearing in my right ear with my entire body numb and tingly and cold sweat. I know about the types of POTS but no more detailed testing yet
I had my Tilt Table Test a couple months ago. Before that, 2 day Holter (postural tachycardia, other fatigue when lying down) & echocardiogram (normal). Brain MRI (normal), and nerve conduction (normal, borderline slow but Dr. mentioned possibly being tall + Raynaud's?).
Neuro suggested SFN (Small fiber neuropathy) because of my nerve pain and other dysautonomia, have not been tested yet. I have not done any other blood testing for neurology, only CRP/ANA/sed rate in the past (pretty much everything normal)
My Beighton score is low (4/9) but I have many other areas that are NOT covered: Patella alta and maltracking, collapsing arch, both hips, right ankle clicking, both shoulders sublux, severe TMJ. I also am diagnosed neurodivergent, have asthma, severe constipation, sinus problems, past hives (heat/exercise/spice/vibration)/rashes/etc... The whole hypermobility buffet
I am seeing a hypermobility specialist PT who is pretty confident on EDS, suggesting it's related to Mast cell issues, as well as cervical instability. 3+ orthopedic doctors I've seen have all suggested EDS despite my 4/9.
Now I have come full circle and am being referred back to cardiology after seeing neurology twice. Neurology had no idea beyond increasing salt (which I'm starting to get scared of), propranolol, Lyrica, tricyclics (amitriptyline / nortriptyline), compression stockings, and a parking pass
Meanwhile my cardiologist didn't want to prescribe anything (first specialist I saw), just diagnosed as Presyncope and look into possible Thoracic Outlet Syndrome, and wanted me to try an Autonomic clinic. Fortunately I could get the tilt table done nearby but I would like to go to somewhere more specialized in the future
I'm also being finally sent to rheumatology after multiple failed referrals, to a new dermatology office (I have hyperpigmentation in my legs that needs biopsy, also patch testing), and have to find a TMJ specialist
My PCP is very scared of fludrocortisone/midodrine (she mentioned risk of osteoporosis and diabetes) and she said she's never prescribed that, also the ADHD meds considering I'm losing weight

F22 W:155lbs H5’6 Conditions: Type one diabetes, rheumatoid arthritis, undiagnosed back pain and stomach issues since 2021 Medications: Humalog, Humira, Tizanidine, Nortriptyline, sertraline
My period has pretty much always been very regular. Had a stint of abnormal periods 3 years after I had my first period due to acne medicine, was put on birth control, was on that for 3.5 years and have been off it for around 2.5 years. Have not been sexually active in 1 year. My period always comes in the first week of the month and lasts 5 days, heavy bleeding and cramps for the first two days and then fine after that. I had my normal period January 2-7. Stopped bleeding. Then on January 22 I started bleeding again. Very dark unusually colored blood and breaking out with acne but no cramps and not heavy. Needing only 2 regular tampons a day. It has not stopped since. I know I need to go to my gyno but I want to know what could be causing this??

​https://salemyoussefmohamed.blogspot.com/2024/02/peripheral-neuropathy.html
It's inflammation or degeneration of the peripheral and cranial nerves resulting in impairment of their conductivity, leading to motor, sensory, and autonomic manifestations. Autonomic manifestation: Impotence and lost testicular sensation. Sensory, motor, or autonomic bladder. Postural hypotension resting tachycardia. Silent myocardial infarction. Gastroparesis: indigestion and delayed gastric emptying. Hyperhydrosis or anhydrosis. Trophic skin changes: ulcers, loss of hair, brittle nails, and Charcot's neuropathic joint. Treatment of diabetic neuropathy: Optimal glucose control is the most effective method of preventing the development of diabetic neuropathy. Vasodilators: e.g., #pentoxyfylline 400mg/12h increases RBCs' flexibility. Vitamins B1, B6, B 12 daily & ATP.
For the neuropathic pain: Anticonvulsants: #Pregabalin:75-300 mg /day. #gabapentin :400-2400mg/day. #Carbamazepine and Oxcarbazepine
#Antidepressants: -#Duloxetine-#Venlafaxine -#tricyclic antidepressants (#Amitriptyline, #Nortriptyline).
​

Hello Doctors of Reddit. I’ve got a mystery for you guys to solve if you can possibly help me. I’ve been a medical mess since I was around 8 years old.
If there is anything I am missing or that you would like me to fill in into this timeline, please let me know.
-8: early and disastrous periods, extremely erratic and heavy.
9: put on antibiotics for acne. Later started BC to control acne and skin inflammation.
Antibiotics lasted for several years, didn’t help skin. BC did but have had it since 10yrs old.
Periods were constantly causing issues. Lots of clotting and mess. Associated issues with textures of objects and food. Nothing serious but present as a symptom.
12: Continued eating meat products and got sent to the hospital with gastritis.
13: Continued eating meat until around 18- When I got hospitalized again for gastritis.
--Meanwhile—
Mental health deteriorating over the course of 13-18, depressive episodes mild. Nerve pain, fatigue, weight gain. Peripheral neuropathy. Migraines for days. Body aches. No abnormal test results.
20: Colonoscopy. No signs of disease. Given Nortriptyline (20mg) and it reduced migraines/ nerve pain significantly.
21: Seen by psychiatric physician. Diagnosed with Bipolar 2 and various anxiety disorders. Intensive therapy reduced anxiety symptoms to nearly nothing. Mood swings better with additional medications. Medications added all the way up to 26 years old. No other signs of disease, mostly pescatarian diet at this point, and considerable stomach upset, pain.
26: Constant nausea over food, burping up emulsified food chunks, heart burn. Etc. All consistent with GERD. Nothing diagnosed. Texture problems with various items still present. Progressively getting worse. No signs of disease evident.
Keep in mind, up until this point I’ve seen a number of doctors for all symptoms included and have been dismissed or drugged up to keep me at a tolerable level of pain and discomfort. No pain medications.
I’ve been tested for diabetes. Nope. Other diseases. No evidence in blood tests. No thyroid problems.
26-27: GERD Symptoms worsening. Taking antacid famotidine daily. Relief but not total removal of symptoms. Constant nausea upon eating.
27: All continuing symptoms. Pantoprazole introduced and reduced GERD-like symptoms to dissipate. Endoscopy done. No signs of disease. Mild irritation of the stomach. Tested for celiacs, no confirming evidence. Started gluten free diet. Mitigates symptoms but still stomach irritation is present. Weight gain continues, despite consistent diet and even lessening of foods.
28: This is where I’m at now. Keep in mind I’ve got a number of symptoms, no confirming results for any testing, and continual dismissal of my experience.
Current Symptoms:
Fatigue
Nausea
Stomach pain (intermittent)
Constipation/Diarrhea (alternating)
Weight Gain
Sensory problems (sensitive to extremes like hot and cold)
Mouth sores on margin of tongue (comes and goes)
If necessary, I can give a list of my medications !but! I do not believe they’re contributing to the overall picture, as I’ve had problems way longer than the meds themselves. If you have any questions or ideas of what I could have, please let me know. I’ve seen endocrinologists. I’ve seen neurologists. I’ve seen GI specialists…. I’m just at the end of my rope and would really like to be able to eat without getting sick at this point.
Procedures I’ve had done without any results:
Scan of spine and skull, MRI
Scan of throat and skull, CT
Colonoscopy
Endoscopy
Ultrasound of uterus and ovaries
Various blood tests and such
Physical examinations
Mental examinations
X-rays of both knees down to the feet and ankles (for muscle/bone pain)
Celiacs Panel and internal samples taken
Thyroid testing
Diabetes testing
Fecal samples (no parasites/unusual findings)
If you have ANY ideas, COMPOUND of ideas, hot guess, PLEASE help.
Medications:
aripiprazole 7.5mg
duloxetine 60mg
bupropion XL 300mg
caffeine 200mg (if I don't I will NOT stay awake)
nortryptyline 20mg
pantoprazole 40mg
isibloom desogestrol and ethical estradiol BC 1 tab daily

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.

37M, 5’6”, 160 lb, white.
For the past two weeks, I’ve been noticing a white, furry coating on the surface of my tongue. It does not hurt, but I often have a bad taste in my mouth even after brushing. I always brush my tongue whenever I brush my teeth (2-3 times/day) and have also tried using a tongue scraper, listerine, xylitol gum, etc. etc. It does not scrape off even a little bit with any of these methods.
I went to a walk-in clinic on Friday and was diagnosed with thrush based on a visual examination. He took my blood to check for diabetes but did not take a sample of the stuff on my tongue. I was prescribed nystatin 10 mg oral solution to swish and spit, and clotrimazole 10mg troche to dissolve on the tongue, both 3x/day for 3 days.
I have done 2 days out of 3 of this course of medication and have noticed zero change in the appearance of my tongue. On top of that, the nystatin is in a solution that tastes like cough syrup and is 50% sucrose, and I feel like I’m killing my teeth by swishing it around my mouth 3 times a day. (I have thin enamel and gum recession all over my mouth and get a lot of pain when my teeth come into contact with sugar, and it doesn’t go away completely after I brush.)
What should my next move be? I feel this was misdiagnosed. Specifically, the doctor said he was able to scrape it off with the tongue depressor but I have never been able to scrape it off even a little bit with my toothbrush or a tongue scraper. If I go back to the walk-in clinic, that’s another $50 copay, but I‘m not sure who else to see about this. My primary care doctor? An ear, nose, throat specialist? My dentist?
I’ve never had anything like this on my tongue. I have been having a ton of dental issues recently, though (past 4 months starting right after my last cleaning, seems to be enamel erosion, cause unknown).
I don’t really want to continue with the nystatin because of the dental pain issue, but I guess I should finish the course.
I have lots of pictures, but apparently I can’t include them in the post without the app (EDIT: added pictures in a comment).
I don't drink, don't smoke tobacco, do vape cannabis about twice a week. I have IBS and acid reflux, both of which are currently doing well -- no symptoms to speak of. I have recurring seborrheic dermatitis on my face. I take nortriptyline, clonidine, omeprazole, and topically ketoconazole.

AGE 35
Sex: Male
300 pounds/136kg
Diagnoses
Diabetic (controlled)
Tachycardia
Anxiety
Meds
Poglitazone 15mg
Nortriptylin 25mg
Venlafaxine 75mg
Atenolol 50mg
OK so my nephew is 16 years old but is severely autistic and when he has a break down he bites and scratches. anyway I ended up on the bad end this time and he bit me thing is it did not go deep rather it is more like blunt damage or something it's like he somehow hurt the under part of the skin when he bite me.
Anyway my sister saw it and wanted to call off work to take me to the ER I said we should just wait and see she clearly disagrees but I'm not that worried so I would like to see what other people think who are doctors.
Here is a link for what it looks like https://www.reddit.com/useryan7251/comments/17lqcwx/ouch/
Only other thing I will say is it does not hurt to move my hand however I even after a few hours do have some pain and a good amount of swelling but nothing unbearable.
Anyway my sister is a little upset that I'm not worried but she is so I was wanting another take thanks to anyone who can help :)

(20, F, no other health issues, no diabetes)
Hi everyone. My journey with chronic yeast started back in april after a course of augmentin for dental treatment.
BACKGROUND:
To cut a very long story short, I had treatment resistant yeast (candida glabrata) which didn’t respond to any kind of azole treatment, for 4 months straight. Even though I was technically treating it with azoles (fluconazole, clotrimazole, itraconazole) my symptoms of itchiness, soreness, cramping, and a yeasty smell in my discharge would not go away.
Finally, I discovered boric acid and used it for 2 weeks, followed up by 2 weeks of vaginal probiotics. I was swabbed again, and this time came back positive for candida lusitaniae.
I used another week of boric acid, waited a week and was then swabbed again. It’s been 5 days since that most recent swab and nothing has grown and the microbiologist couldn’t see anything but a few lactobacilli under the microscope.
Over the past 6 months i’ve been treated with so many medications vaginally:

• 14 days of 100mg tinidazole + 100mg clotrimazole + 100mg clindamycin suppositories
• Intravaginal lactobacillus plantarum suppositories
• 500mg Clotrimazole suppositories canesten brand
• 14 day course of boric acid
• 7 day course of boric acid
• 2 weeks of femdophilus suppositories

CURRENT ISSUE:
As you can tell i’ve had so much vaginal treatment over the past 6 months. Although I am testing negative for yeast, I’ve developed shooting/stabbing pains that shoot upwards into my vagina as well as soreness in the 3-5oclock position… constantly. My left labia is also constantly sore. My doctors think that the nerves down there have gotten used to the sense of pain from the infection, and are irritated from all of the medication. I’ve started with 10mg nortriptyline a few days ago and am waiting to feel a difference. I got an MRI done to rule out any other causes (endometriosis, cysts) and everything was normal… except some inflammation in the lower third of the vagina wall.
This has whole situation has made me depressed and so upset and lonely. I’m going to start therapy because of my constant low moods because of this. I’m always crying and upset and just want the pain to stop. If anyone was in a similar position to me and can offer any advice/support I would be so grateful, thank you!

(20, F, no other health issues, no diabetes)
Hi everyone. My journey with chronic yeast started back in april after a course of augmentin for dental treatment.
BACKGROUND:
To cut a very long story short, I had treatment resistant yeast (candida glabrata) which didn’t respond to any kind of azole treatment, for 4 months straight. Even though I was technically treating it with azoles (fluconazole, clotrimazole, itraconazole) my symptoms of itchiness, soreness, cramping, and a yeasty smell in my discharge would not go away.
Finally, I discovered boric acid and used it for 2 weeks, followed up by 2 weeks of vaginal probiotics. I was swabbed again, and this time came back positive for candida lusitaniae.
I used another week of boric acid, waited a week and was then swabbed again. It’s been 5 days since that most recent swab and nothing has grown and the microbiologist couldn’t see anything but a few lactobacilli under the microscope.
Over the past 6 months i’ve been treated with so many medications vaginally:

• 14 days of 100mg tinidazole + 100mg clotrimazole + 100mg clindamycin suppositories
• Intravaginal lactobacillus plantarum suppositories
• 500mg Clotrimazole suppositories canesten brand
• 14 day course of boric acid
• 7 day course of boric acid
• 2 weeks of femdophilus suppositories

CURRENT ISSUE:
As you can tell i’ve had so much vaginal treatment over the past 6 months. Although I am testing negative for yeast, I’ve developed shooting/stabbing pains that shoot upwards into my vagina as well as soreness in the 3-5oclock position… constantly. My left labia is also constantly sore. My doctors think that the nerves down there have gotten used to the sense of pain from the infection, and are irritated from all of the medication. I’ve started with 10mg nortriptyline a few days ago and am waiting to feel a difference. I got an MRI done to rule out any other causes (endometriosis, cysts) and everything was normal… except some inflammation in the lower third of the vagina wall.
This has whole situation has made me depressed and so upset and lonely. I’m going to start therapy because of my constant low moods because of this. I’m always crying and upset and just want the pain to stop. If anyone was in a similar position to me and can offer any advice/support I would be so grateful, thank you!

Hi,
I was prescribed nortriptyline for neuropathy, as well as depression.
I have type 1 diabetes and have noticed a slight increase in my blood sugars and insulin needs in the past week since I started the nortriptyline. I don't know if the changes I have seen with blood sugar are related to nortriptyline or not, because so many things can effect blood sugars.
I was wondering if anyone else has had raised blood sugars or an increase in their insulin needs while on nortriptyline.
​

(NOTE: Please comment any helpful advice, suggestions, critiques, research or any information for improving this megathread. 🙂) The main approaches for managing gastroparesis (GP) involve improving gastric emptying, ruling out and addressing known root causes of GP, and reducing the severity of symptoms such as bloating, indigestion, nausea, and vomiting. Gastroparesis is a condition that affects the ability of muscular contractions to effectively propel food through your digestive tract. This stomach malfunction results in delayed gastric emptying. Gastroparesis is typically diagnosed via a gastric emptying study (GES) when other more common GI ailments have been ruled out.

1. Prokinetic Drugs. Prokinetics are a class of prescription drugs that are designed to improve gastric emptying by stimulating the stomach muscles responsible for peristalsis. These drugs include but aren’t limited to Reglan, Domperidone, Motegrity, and Erythromycin. Reglan may cause serious, irreversible side effects such as tardive dyskinesia (TD), a disorder characterized by uncontrollable, abnormal, and repetitive movements of the face, torso and/or other body parts. Doctors can write scipts for domperidone to online pharmacies in order to bypass the tricky regulations in the United States. Ginger, peppermint, and artichoke are popular natural prokinetics.
2. Enterra (Gastric Pacemaker). Enterra is a device that’s laparoscopically implanted onto the stomach and is a treatment option for people who suffer from chronic nausea and vomiting associated with gastroparesis of diabetic or idiopathic origin. This device is offered when standard medications for GP are ineffective. Enterra Therapy involves electrical stimulation of the lower stomach with a system consisting of a generator implanted deep within the tissues of the abdomen, and two electrical leads which are implanted in the wall of the stomach. Ideally, symptoms of nausea and vomiting will improve or be eliminated entirely. Enterra has a higher rate of success among diabetics and procedures such as GPOEM can be combined to maximize relief.
3. GPOEM, POP, Pyloroplasty, Botox. Delayed gastric emptying can occur when the pyloric valve (the valve connecting the stomach to the intestines) is resistant. In these cases, the pyloric valve can be ‘loosened’ through procedures such as GPOEM, POP, and pyloroplasty. Even when the pylorus functions normally some physicians still recommend these procedures for people with severely delayed gastric emptying caused by the pacemaker cells of the stomach not being able to move food. Botox injections are occasionally performed to predict if such a procedure would be effective (although how predictable is debatable). Enterra and procedures such as GPOEM are often combined to maximize relief.
4. Antiemetics. Drugs such as phenergan, ativan, zofran, etc. may help reduce nausea. OTC options include dramamine. Antidepressants such as Remeron (mirtzapine) and amitryptiline are not technically antiemetics but can be prescribed as an "off-label" treatment for nausea and vomiting.
5. Dieting and Lifestyle. Foods high in fat and fiber are hard to digest and therefore may worsen symptoms. Large volumes of food may worsen symptoms as well. Alcohol, caffeine, gluten, nicotine, and dairy may also be triggers. Marijuana is known to reduce nausea and vomiting but THC can also further delay gastric emptying. Long term use of marijuana is associated with cannabis hyperemesis syndrome (CHS). OTC supplements include "Gas-X", a natural supplement that may reduce belching and bloating, and Iberogast.
6. Feeding Tubes/TPN. For patients that are unable to keep down food and standard medications are ineffective, feeding tubes may be a viable option. Gastric (G) tubes are placed in the stomach while Jejunostomy (J) tubes bypass the stomach entirely and provide nutrients directly into the small intestine. In extreme cases, total parental nutrition (TPN) is a method of intravenous feeding that bypasses the entire gastrointestinal tract.
7. Known Root Causes. Unfortunately, the etiology of gastroparesis is poorly understood. Many cases are not identifiable with a root cause (idiopathic GP). The main causes of GP, as well as comorbid diseases include: diabetes, Ehlers-Danlos syndrome (EDS), Median Arcuate Ligament Syndrome (MALS), myasthenia gravis, vagus nerve damage, post-surgical complications, autoimmune conditions such as Chrohn's Disease, thyroid issues (such as hypothyroidism), an impaired pyloric valve, dysautonomia, functional dyspepsia, cyclical vomiting syndrome, hernias, IBS, Hashimoto's Disease, reactive hypoglycemia, endometriosis, POTS, MCAS, multiple sclerosis, Scleroderma, Parkinson's, SIBO, and more. Constipation and IBS can also be comorbid with GP. Certain medications that slow the rate of stomach emptying, such as narcotic pain medications can also cause or worsen GP. Some of the autoimmune conditions causing GP can be treated with intravenous immunoglobulin (IGIV) therapy, although its effectiveness in a clinical setting is inconclusive. MALS is a condition that, in some cases, can be fixed with surgery thereby 'curing' those specific cases of GP. Reported cases of GP have risen in modern times, especially in light of the COVID-19 pandemic. Gastroparesis caused by acute infections such as viruses and bacteria may heal on its own over a period of months to years. Gastroparesis is more common in women than men. Recently there's been a surge of younger women being diagnosed with GP. According to Dr. Michael Cline, "gastroparesis has surged in young women in the U.S. since 2014... In these young women, it tends to be autoimmune-related. Many have thyroid disease, rheumatoid arthritis or lupus."
8. Motility Clinics/Neurogastroenterologists. Finding a doctor right for you can be vital to managing gastroparesis. When regular gastroenterologists aren’t sufficient, it may be beneficial to seek institutions and specialists that are more specialized in nerve and motility ailments of the GI tract such as gastroparesis, functional dyspepsia, cyclic vomiting syndrome, and so forth. These kinds of doctors include neuro gastroenterologists and motility clinics. See "Additional Resources" below for a list of motility clinics and neurogastroenterologists submitted by users of this forum.
9. Gastric Emptying Study (GES), SmartPill, EGG. These tests are used to measure gastric motility and gastric activity. For the GES, the gold standard is considered to be a four hour test with eggs and toast. A retention rate of 10-15% of food retained after four hours is considered mild GP; 16-35% is moderate GP; and any value greater than 35% retention is severe GP. Note that retention rates on a GES are notorious for having a large variation between tests and that retention rates don't necessarily correlate to the severity of symptoms. In addition to measuring stomach emptying, SmartPill can also measure pH and motility for the rest of the GI tract. The electrogastrogram (EGG) is a technique to measure the electrical impulses that circulate through the muscles of the stomach to control their contractions. This test involves measuring the activity of gastric dysrhythmias and plateau/action potential activities of the Interstitial cells of Cajal (ICCs), which are the pacemaker cells of the stomach.
10. Functional Dyspepsia, Cyclic Vomiting Syndrome (CVS), etc. Gut-brain axis research has led to antidepressant SSRIs and tetracyclines being used to treat nausea, post-prandial fullness, and other GI symptoms resulting from functional dyspepsia, CVS, gastroparesis, etc. These drugs include mirtazapine, lexapro, amitryptiline, nortriptyline, etc. Buspirone is a fundus relaxing drug. Some research suggests that CVS patients can be treated with supplements such as co-enzyme Q10, L-carnitine, and vitamin B2 along with the drug amitriptyline. Modern research suggests that gastroparesis and functional dyspepsia are not totally separate diseases; instead, they lie on a spectrum.

​
Additional Resources

1. Support Groups (Discord, Facebook, etc.) . Click this link for a list of support groups designed for people suffering with gastroparesis to casually meet new people and share information and experiences.
2. Click this link for a list of popular neurogastroenterologists and motility clinics submitted by users of this sub.
3. View the megathread at Gastritis for advice on managing chronic gastritis.
4. The most popular gastroparesis specialist discussed in this forum is renowned Gastroparesis specialist Dr. Michael Cline at the Cleveland Clinic in Ohio.
5. Need domperidone? Some GI’s are willing to write scripts for online pharmacies to have it shipped from Canada to the USA. For legal reasons, the names of these websites will not be linked on this manuscript (but there’s no rules stopping you from asking around).
6. Enterra's Search Engine to find a doctor that specializes in Enterra Therapy.
7. SmartPill’s search engine to find a provider that offers SmartPill testing.
8. GPACT's lists of doctors and dieticians for GP.
9. There's a new test that recently gained FDA approval called gastric altimetry.

​
EVEN MORE ADDITIONAL RESOURCES

• "Ask the Expert Series: Gastroparesis" - a Q&A by Dr. Richard McCallum, Gastroenterologist and Professor of Medicine at Texas Tech University Health Sciences Center explaining the early signs of GP and how to treat GP in the event that the disease becomes more severe.
• "Functional Dyspepsia and Gastroparesis UCLA Digestive Diseases" - a lecture by Lisa D. Lin, MD, MS of UCLA Digestive Diseases explaining the relationship between gastroparesis and functional dyspepsia, as well as treatment options.
• "An Approach to Chronic Nausea and Vomiting" - an overview of the main diseases and syndromes known to cause chronic nausea and vomiting by Eric Strong, clinical associate professor of medicine at Stanford University.
• "Cyclic Vomiting Syndrome" - a detailed lecture on chronic vomiting syndrome (CVS) by Eric Strong, clinical associate professor of medicine at Stanford University.
• "MD Insights: Dr. Mike Cline" - renowned gastroparesis specialist Dr. Michael Cline from the Cleveland Clinic discusses gastroparesis, autoimmune and other causes, evaluation and treatment with medication, pacing, per-oral pyloromyotomy and research.

Talked about this on the IC subreddit too but wanted to see what you guys thought as well.
I(31F) had bladder issues most of my life, but not too bad when I was a child/teenager. My frequent restroom going was pretty much a family joke, though as a child I did have bedwetting caused by sleep apnea, caused by near complete blockage due to swollen/oversized tonsils and adnoids, which was resolved as soon as they were removed when I was fourteen.
I still continued to pee frequently, especially when I was stressed, but it was considered a non-issue and a doctor I went to told me, after I did a one week bladder diary and elimination diet, that I was just peeing too frequently when I felt the slightest bit of pressure, and as my bladder could hold a normal amount, to retrain my bladder and work on spacing out the times I needed to go.
Fast forward to 2019. I had a really bad urinary tract infection which caused leakage and was given antibiotics, but the situation never fully resolved. I went through a battery of tests(MRI/CAT scan of lower organs normal, nothing wrong on blood work) and was sent to pelvic floor therapy, where I stayed for almost a year until going off it due to fiances and the COVID19 pandemic. I had symptoms off and on both during and after therapy which I thought were UTIs due to white blood cells in the urine. Was tested for diabetes several times but did not have it. I eventually went to a urogynecologist who listened to my symptoms and told me I had overactive bladder, and put me on oxybutin, which didn't fully resolve everything but did help. Early this year, I noticed my symptoms, especially bladder leakage, getting worse again, so I tried eliminating foods I knew made me go more frequently, and the urgency sort of diminished, but the leakage seemed to get worse. The leakage doesn't seem to be connected to the urge to go and will often happen AFTER I empty my bladder, or right before my body signals I need to poop, or sometimes just at random.
I called my urogynecologist, who seemed unconcerned, but tried increasing the dose of oxybutin to 15MG, which barely seemed to help(though I believe I was on the dosage for only about a week), and then when I went to another doctor, my primary care physician, on Wednesday and mentioned something I hadn't thought to mention(that I sometimes have bowel issues too, and that I can go from randomly constipated to having diarrhea when I got stressed).
I mostly was in there because I wanted to know if I had IBS, as the random constipation and diarrhea interferes with my bladder. She listened to my symptoms and told me I didn't have overactive bladder, that that happened in people much older and that I actually most likely had intersistal cystitis as well as IBS and needed to go off the oxybutin. She put me on nortriptyline(10MG), saying it would help both the bladder issues and the IBS.
I was starting to experience some really bad burning in my urethra and wanted to check to make sure it wasn't a UTI, so I called my urogynecologist and did mention the medication change to make sure both doctors knew what medicine I was taking. I ended up talking to the receptionist, who contacted my doctor. They gave me the UTI order, but told me my OAB doctor needed to talk to me as I shouldn't change meds without asking them, but they haven't called me back yet since, and they moved my appointment to May because they had changed my oxybutin to a higher dose.
I did go to get a clean cath done because my UTI test read, "Mixed Urethra flora" and the cath showed no infection. I had it checked for ketones or sediments too and the machine said nothing was wrong with my urine. There was also no prolapse or anything the nurse could spot wrong with my vaginal area.
So I have no clue what the heck's going on. I eliminated soda and chocolate and have for a little over a month and limited acidic foods and only eat them with prelief. I pretty much drink only water. Sometimes I feel better and sometimes I feel worse and I can't figure out what the heck's causing it. My family thinks stress is the primary cause of my symptoms, not diet as my bladder spazs out no matter what I do and gets worse when I'm stressed.
TL:DR: Got two different diagnoses and have no clue if it's OAB, IC, both, or neither. Diet changes don't seem to make too much difference and I'm not sure what my next step should be.

M32 308lbs 5’9” diabetic
I am at my wits end trying to figure out what I have. For the past 5 months I have been having hard painful lumps that I can feel under my skin in my abdominal area. Sometimes on the left side, sometimes on the right. I’d say they measure about half of an inch in diameter. They last anywhere from a few hours up to 3-4 days then go away only to come back again. Usually only one or two will show up at a time however I’ve had a few cases of “attacks” where I will get a throbbing pain in my upper left abdomen along with back pain and 6-7 of these lumps across my upper abdomen. They are under the skin so they are not visible, only felt when pressing around my belly. Usually comes with what feel like abdominal cramps and pain up and down my back that lasts for days.
On top of this, for almost year I have been having all kinds of neurological issues such as body and face numbness, “electric” shocks throughout my body, migraines and dizziness.
I have had multiple trips to the ER where they’ll do blood tests such as liver function panels, lipase, and blood cell counts as well as urine tests. All coming back normal.
I have discussed this with my doctor. He didn’t seem too concerned about it. Said it may be hardened nerve endings but didn’t give me a cause or diagnosis. He prescribed me nortriptyline that I started taking, but after 3 days (one 10mg pill per day) my heart rate was skyrocketing so I stoped.
After weeks of searching, ACNES is high on my list of what I may have but I haven’t seen any mention of lumps, numbness, or headaches. Any insight?

Ever since I've started nortriptyline, every once in a while I will have extremely blood-sugar-crash-y symptoms. I get sweaty and shaky, my ankles and wrists feel kind of weak and I get a feeling like I ABSOLUTELY NEED SUGAR RIGHT NOW. I listen to my body when this happens and usually stuff a bunch of candy in my face, which makes it calm down after about 15 minutes.
However, I literally just had bloodwork done within the last week, and again two weeks prior, and my numbers seem fine. I am also not a diabetic and have never had diabetes (I am 32 years old). I've also never has these symptoms at any other time during the day; it's only at night about 2-3 hours after my last meal of the day; I take my nortriptyline along with that meal usually.
To me it seems like it couldn't be much else. I've generally been eating very healthy for the past month or two. I didn't have any symptoms during the week I stopped taking it. But after I went back on nortriptyline, I've had this happen twice in about a week. Today it happened while working out, although I did eat garbage for dinner (Texas Roadhouse) about 2 hours prior. Maybe nortriptyline makes me more sensitive to blood sugar changes?
Anyone experience low blood sugar as a side effect from TCAs or other antidepressants? I'm just scared I'm going to drop dead or something.
BTW, just so it's clear...I'm not asking if I have diabetes. I'm just wondering if anyone knows if nortriptyline can cause blood sugar issues. The nortriptyline board is kinda dead.

M32 308lbs 5’9” diabetic and have acid reflux.
For the past 4 months I have been having hard painful lumps that I can feel under my skin in my abdominal area. Sometimes on the left side, sometimes on the right. I’d say they measure about half of an inch in diameter. They last anywhere from a few hours up to 3-4 days then go away only to come back again. Usually only one or two will show up at a time however I’ve had a few cases of “attacks” where I will get a throbbing pain in my upper left abdomen along with back pain and 6-7 of these lumps across my upper abdomen. They are under the skin so they are not visible, only felt when pressing around my belly. Usually comes with abdominal cramps that last for days.
I have had multiple trip to ER where they’ll do blood tests such as liver function panels, lipase, and blood cell counts as well as urine tests. All coming back normal.
I have discussed this with my doctor. He didn’t seem too concerned about it. Said it may be hardened nerve endings and prescribed me nortriptyline. I started taking it but after 3 days (one 10mg pill per day) my heart rate was skyrocketing so I stoped.
I’ve gone down the google and web md rabbit hole and can’t seem to find anything that matches what I’m experiencing.
I plan to see my doctor at the end of this week so i would like to go in with a few suggestions on what to check next so any insight would help. Thank you.

M32 308lbs 5’9” diabetic and have acid reflux.
For the past 4 months I have been having hard painful lumps that I can feel under my skin in my abdominal area. Sometimes on the left side, sometimes on the right. I’d say they measure about half of an inch in diameter. They last anywhere from a few hours up to 3-4 days then go away only to come back again. Usually only one or two will show up at a time however I’ve had a few cases of “attacks” where I will get a throbbing pain in my upper left abdomen along with back pain and 6-7 of these lumps across my upper abdomen. They are under the skin so they are not visible, only felt when pressing around my belly. Usually comes with abdominal cramps that last for days.
I have had multiple trip to ER where they’ll do blood tests such as liver function panels, lipase, and blood cell counts as well as urine tests. All coming back normal.
I have discussed this with my doctor. He didn’t seem too concerned about it. Said it may be hardened nerve endings and prescribed me nortriptyline. I started taking it but after 3 days (one 10mg pill per day) my heart rate was skyrocketing so I stoped.
I’ve gone down the google and web md rabbit hole and can’t seem to find anything that matches what I’m experiencing.
I plan to see my doctor at the end of this week so i would like to go in with a few suggestions on what to check next so any insight would help. Thank you.

Exercise intolerance despite being relatively fit with a history of previous training (28M)
Age - 28
Sex - Male
Height - 5'7
Weight - 145 lbs
Race - Caucasian
Primary compliant - similar cluster of symptoms that arise during exercise, at rest, and upon waking up.
Existing medical issues - IBS and Gilbert's syndrome
Existing medication - nortriptyline 10 mg oral once per night for IBS.
Drug and alcohol consumption - none
Detailed symptoms:
I have been experiencing a similar cluster of symptoms for the past few years. They have gotten progressively worse. As I mentioned, these symptoms typically arise during exercise, sporadically at rest, and usually when waking up after a bad nights sleep (I dont sleep well most nights, <7 hours/night).
The symptoms usually present as:

• Feeling dizzy or faint;
• GI distress;
• Cold hands (Despite the rest of my body being fine);
• Excessive thirst (however, I am usually always VERY thirsty throughout the day);
• Shaking

Exercise induced symptoms:
These symptoms first appeared in 2019 after I went to the ER following an Orange Theory class. I was diagnosed with metabolic acidosis. Ever since then, my exercise tolerance has only worsened. I tried to do a spin class about a week later, and I ended up back in the ER with similar symptoms (e.g., feeling faint/dizzy, GI distress, cold hands, shaking, hyperventilating, and my body went tonic - this is the worst its ever been). As I mentioned, I am (or was) relatively fit. I was a personal training for 5+ years. I did Crossfit, Orange Theory, group exercise classes, and I was a competitive powerlifter at one point. I am use to exerting myself with exercise; however, the symptoms I feel presently do not feel like over exertion. Sometimes I can barely work up a sweat. The symptoms usually during HIIT and extremely strenuous strength training or low volume long duration aerobic or strength training. When these symptoms present, my heart rate usually remains elevated (>120 BPM) for at least 20-30 minutes prior to the activity (even at rest). I also notice that my intolerance is worse with leg based activities. I can take a week off from doing any upper body activity, and I will be fine returning to exercise that following week. However, if I take even the slightest amount of time off from leg training, then they cramp almost immediately, and they feel very weak very shortly into the exercise session. I can do a few sets of squats and they will already be cramping and fatigued... again, this is nothing like the intensity I am use to performing at. The symptoms I previously mentioned will also present during these episodes. I am a 5th year PhD candidate preparing to graduate, so I haven't been able to stay as active as I would have liked to, but the inactivity only seems to add to the exercise intolerance as I become more detrained... its a vicious cycle.
Sporadic symptoms:
As I mentioned, some of these symptoms will appear randomly throughout the day. I haven't been able to really pinpoint a trigger though. I notice these symptoms occur more often if my IBS is flaring up or If I was not sleeping well. As I mentioned, I am usually always very thirsty, but when these symptoms present it makes it even worse. My thirst is usually never quenched, and I am limited by how much water I am physically capable of drinking.
I have had some fasting blood work recently performed. I have included the abnormal results
Glucose - 102 mg/dL
Total bilirubin - 1.4 mg/dl
Iron - 38 ug/dL (not below the lower limit, but still relatively low)
Iron Saturation 18% (similar rationale to iron)
Vitamin D- 39 ng/ml
Carbon dioxide - 20 mMol/L (similar rationale to iron)
HBA1C - 5.3% (not abnormal, just providing for contextualizing blood glucose values)
Does anyone have any thoughts as to what might be causing this, what tests I can have done or what type of specialist I can see? I feel like some of these symptoms are consistent with a diagnosis of diabetes, and I have also seen articles saying that low iron is associated with diabetes. But, my HBA1C is normal, and my blood glucose (despite usually being slightly elevated) doesn't seem to raise any flags. I am not saying it is diabetes, but Its really one of the only things I can find that fits.
Every doctor I go to tells me that I am young and healthy, but I do not feel healthy at all.
Any help would be greatly appreciated. I would really like to feel normal again.

I(31F) had bladder issues most of my life, but not too bad when I was a child/teenager. My frequent restroom going was pretty much a family joke, though as a child I did have bedwetting caused by sleep apnea, caused by near complete blockage due to swollen/oversized tonsils and adnoids, which was resolved as soon as they were removed when I was fourteen.
I still continued to pee frequently, especially when I was stressed, but it was considered a non-issue and a doctor I went to told me, after I did a one week bladder diary and elimination diet, that I was just peeing too frequently when I felt the slightest bit of pressure, and as my bladder could hold a normal amount, to retrain my bladder and work on spacing out the times I needed to go.
Fast forward to 2018(I think). I had a really bad urinary tract infection which caused leakage and was given antibiotics, but the situation never fully resolved. I went through a battery of tests(MRI/CAT scan of lower organs normal, nothing wrong on blood work) and was sent to pelvic floor therapy, where I stayed for almost a year until going off it due to fiances and the COVID19 pandemic. I had symptoms off and on both during and after therapy which I thought were UTIs due to white blood cells in the urine. Was tested for diabetes several times but did not have it. I eventually went to a urogynecologist who listened to my symptoms and told me I had overactive bladder, and put me on oxybutin, which didn't fully resolve everything but did help. Early this year, I noticed my symptoms, especially bladder leakage, getting worse again, so I tried eliminating foods I knew made me go more frequently, and the urgency sort of diminished, but the leakage seemed to get worse.
I called my urogynecologist, who seemed unconcerned, but tried increasing the dose of oxybutin to 15MG, which barely seemed to help(though I believe I was on the dosage for only about a week), and then when I went to another doctor, my primary care physician, on Wednesday and mentioned something I hadn't thought to mention(that I sometimes have bowel issues too, and that I can go from randomly constipated to having diarrhea when I got stressed).
I mostly was in there because I wanted to know if I had IBS, as the random constipation and diarrhea interferes with my bladder. She listened to my symptoms and told me I didn't have overactive bladder, that that happened in people much older and that I actually most likely had intersistal cystitis as well as IBS and needed to go off the oxybutin. She put me on nortriptyline(10MG), saying it would help both the bladder issues and the IBS.
I was starting to experience some really bad burning in my urethra and wanted to check to make sure it wasn't a UTI, so I called my urogynecologist and did mention the medication change to make sure both doctors knew what medicine I was taking. I ended up talking to the receptionist, who contacted my doctor. They gave me the UTI order, but told me my OAB doctor needed to talk to me as I shouldn't change meds without asking them, but they haven't called me back yet since, and they moved my appointment to May because they had changed my oxybutin earlier
So now I'm confused, extremely stressed and anxious, and now experiencing one of the worst flare ups I had since the major UTI, feeling like I'm leaking all the time and that my urethra burns at the slightest amount of pee in it and doesn't want to hold anything and trying to both eliminate all further possible irritants from my diet and wait for the new meds to hopefully kick in and settle my stupid bladder down. Generalized anxiety disorder is not helping this mess at all and I'm scared I'll never get better. Does anyone have any advice?
TL:DR: My doctor's can't seem to decide if I have Overactive Bladder or Interstitial Cystitis. I'm in pain, stressed out, and have no clue what to do. If anyone has any advice on how to feel better, at least to get through this weekend, I'd really appreciate it.

Age - 28
Sex - Male
Height - 5'7
Weight - 145 lbs
Race - Caucasian
Primary compliant - similar cluster of symptoms that arise during exercise, at rest, and upon waking up.
Existing medical issues - IBS and Gilbert's syndrome
Existing medication - nortriptyline 10 mg oral once per night for IBS.
Drug and alcohol consumption - none
Detailed symptoms:
I have been experiencing a similar cluster of symptoms for the past few years. They have gotten progressively worse. As I mentioned, these symptoms typically arise during exercise, sporadically at rest, and usually when waking up after a bad nights sleep (I dont sleep well most nights, <7 hours/night).
The symptoms usually present as:

• Feeling dizzy or faint;
• GI distress;
• Cold hands (Despite the rest of my body being fine);
• Excessive thirst (however, I am usually always VERY thirsty throughout the day);
• Shaking

Exercise induced symptoms:
These symptoms first appeared in 2019 after I went to the ER following an Orange Theory class. I was diagnosed with metabolic acidosis. Ever since then, my exercise tolerance has only worsened. I tried to do a spin class about a week later, and I ended up back in the ER with similar symptoms (e.g., feeling faint/dizzy, GI distress, cold hands, shaking, hyperventilating, and my body went tonic - this is the worst its ever been). As I mentioned, I am (or was) relatively fit. I was a personal training for 5+ years. I did Crossfit, Orange Theory, group exercise classes, and I was a competitive powerlifter at one point. I am use to exerting myself with exercise; however, the symptoms I feel presently do not feel like over exertion. Sometimes I can barely work up a sweat. The symptoms usually during HIIT and extremely strenuous strength training or low volume long duration aerobic or strength training. When these symptoms present, my heart rate usually remains elevated (>120 BPM) for at least 20-30 minutes prior to the activity (even at rest). I also notice that my intolerance is worse with leg based activities. I can take a week off from doing any upper body activity, and I will be fine returning to exercise that following week. However, if I take even the slightest amount of time off from leg training, then they cramp almost immediately, and they feel very weak very shortly into the exercise session. I can do a few sets of squats and they will already be cramping and fatigued... again, this is nothing like the intensity I am use to performing at. The symptoms I previously mentioned will also present during these episodes. I am a 5th year PhD candidate preparing to graduate, so I haven't been able to stay as active as I would have liked to, but the inactivity only seems to add to the exercise intolerance as I become more detrained... its a vicious cycle.
Sporadic symptoms:
As I mentioned, some of these symptoms will appear randomly throughout the day. I haven't been able to really pinpoint a trigger though. I notice these symptoms occur more often if my IBS is flaring up or If I was not sleeping well. As I mentioned, I am usually always very thirsty, but when these symptoms present it makes it even worse. My thirst is usually never quenched, and I am limited by how much water I am physically capable of drinking.
I have had some fasting blood work recently performed. I have included the abnormal results
Glucose - 102 mg/dL
Total bilirubin - 1.4 mg/dl
Iron - 38 ug/dL (not below the lower limit, but still relatively low)
Iron Saturation 18% (similar rationale to iron)
Vitamin D- 39 ng/ml
Carbon dioxide - 20 mMol/L (similar rationale to iron)
HBA1C - 5.3% (not abnormal, just providing for contextualizing blood glucose values)
Does anyone have any thoughts as to what might be causing this, what tests I can have done or what type of specialist I can see? I feel like some of these symptoms are consistent with a diagnosis of diabetes, and I have also seen articles saying that low iron is associated with diabetes. But, my HBA1C is normal, and my blood glucose (despite usually being slightly elevated) doesn't seem to raise any flags. I am not saying it is diabetes, but Its really one of the only things I can find that fits.
Every doctor I go to tells me that I am young and healthy, but I do not feel healthy at all.
Any help would be greatly appreciated. I would really like to feel normal again.

If asking for my partner who suffers from chronic nerve pain following cancer surgery & due to ongoing chemotherapy. In addition to diabetic neuropathy.
It appears there are common experiences with gabapentin and people have alternatives that work, without issues such as extreme brain fog.
She's on the standard mix of gabapentin & nortriptyline.... But serious brain fog, memory issues, symptoms bordering on a depression diagnosis.
So we're evaluating alternatives. Lyrica comes up first. Her neurologist mentioned that there are several new medications for nerve pain.
Anyone successful with alternatives to gabapentin. Lyrica? Anything new on the market? Possibly off-label use of other medications? "Nortriptyline is an example of off-label use for pain as it's a older tricyclic antidepressant. *
TIA