Sumatriptan prednisone

New here

2024.05.11 00:20 Cambren1 New here

New here, unfortunately not new to CH. I was clear for years, now having a bad time trying to stop this episode. Shrooms, prednisone, D3, Verapimil, Red Bull are what I am living on. Only thing that stops it is Sumatriptan, which my cardiologist told me not to use. I split the injections to 3mg, and my neurologist gave me a few 20mg nasal sprays which take about 15 minutes to work. Anyway, misery loves company and I can’t think of a more miserable bunch than cluster heads. Best pain free wishes to all.
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2024.05.06 05:45 TranslatorDiligent64 Daily Headache/Migraine since hitting head in November- any similar experiences?

I've been lurking in this thread for awhile now and wanted to share my story to see if anyone here has had a similiar issue and if so what have you found to be helpful. We have ultimately decided since I have responded to sumatriptan that this is a migraine issue.
Prior to this I did not have a headache or migraine history. The only times I had a headache were when I wore my hair in too tight of a ponytail, or was hungover.
I hit my head twice in one day on November 30, 2023 and had a headache that day. About a week went by full of work deadlines etc. then on December 6, 2023 I got another migraine. I have now had a migraine of varying degrees everyday since.
My first visit to the doctor included me trying prednisone and meloxicam. Neither treatment made much of a difference.
Next, I began to see a neurologist. At this point we determined that I must have had a concussion back on November 30 and the next step is to simply to move forward with treating this like a migraine and/or tension headache.
At this point I have tried nerve blocks twice, daily COQ10 and B2, weekly IV magnesium, Candesartan 8mg (do not love it), sumatriptan (helpful at times, and other times terrible side effects), switched to an IUD, and physical therapy (discontinued for now). All of these things have gotten me to a point where I am now having mild everyday headaches but they are still everyday.
I would love to get to a point where it is more predictable, and where I have at least some days of no pain. At this point my "best day" since November 30th was a few weeks ago when I was headache free up until 10pm when I laid down to read.
In terms of triggers, the only things I can really say for certain are bending my head over (reading, cooking, folding), hunching, crossing my legs, and stress. I have pretty consistent neck pain regardless of what I do.
Thankfully I am much more functional than I was initially but I would really enjoy getting to a point where things are more predictable and I have some pain free days. I would appreciate any thoughts if you have been through something similiar and what ended up working for you. TIA!
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2024.05.05 14:05 IMadeItAllUpTwice Return after 4 years - o2 non responsive

I’m in the middle of a bad break starting April 17th. Progressively getting worse. I’m oxygen non-responsive and typically only imitrex injectables have worked once onset takes off. Made it 8 or so days before needing to use my first pen - but now needing to run for one daily.
Normally prednisone can bust the cluster before this point, but it doesn’t seem to be working this time. I have a stockpile of prednisone and began my normal regiment of 60mg day 1-2, 50 day 3-4, titrating. But no luck.
Anyone have any luck busting clusters, or with anything other than imitrex for aborting? I was going to try the psilocybin route - but read you can’t use sumatriptan (imitrex) - though the information seems somewhat limited. I absolutely cannot /not/ use it when a headache fully comes on due to severity. I’m running out of my stockpile and getting worried I’m going to be back into the ER trying to explain to nurses that yes 10/10 pain is real, and no I’m not drug seeking.
Anyone help/advice? Tyia.
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2024.05.03 04:58 kingZD8 What type of Oxygen should I ask my doctor for? Flow rates? Type of tank?

Hi all,
Been suffering from clusters for about 5 years now. I have been using sumatriptan as an abortive. verapamil & emgality as preventatives. Prednisone to break any cycle that occurs long than a week or two.
Many of you seem to have had success using oxygen to abort an attack if you can feel a headache coming on.
I was wondering what type of medical grade oxygen do you all use? What is the oxygen flow rate I should use? What should I tell my doctor to prescribe?
Thanks for any response. It’s greatly appreciated.
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2024.04.28 18:50 NinjaJ10 My migraine experience so far. Advice is appreciated!

Just wanted to share my migraine experience thus far to hopefully gain some insight from others. (This may also be occipital neuralgia but I have not received an official diagnoses yet).
Late January. I (M30) suffered my first ever migraine that hit me like a train. I had a peculiar throbbing pain on the right side of my head that I’ve never had before. I quickly became light sensitive and slightly nauseas. I went to the ER in which they performed an EKG, CT scan of the brain, and an angiogram of the brain. These tests came back completely negative. I was given a steroid and anti-nausea injection. I recovered fairly quickly from this with no lingering symptoms as I was back to my usual routine between work and daily exercise.
Early February. Unfortunately, I had my second migraine attack while I was at work, causing me to leave early. Fortunately, I was able to meet with my PCP that same day in which she prescribed Prednisone while also ordering an MRI. After taking the first dose, I woke up around 2:30am with my heart rate spiking to 144 BPM. I figured this was most likely a side effect but still went back to ER to be sure and because I was honestly scared out of my mind. The ER doctor confirmed that this was, in fact, caused by the Prednisone but still encouraged me to continue using it. He also prescribed Compazine and instructed me to take it at night alongside Benadryl. I noticed an improvement after the first dose but every other dose had no other effect. After meeting with my PCP again, she advised me to avoid Prednisone for the time being. I had my MRI later that month which also came back completely negative. I was then referred to a neurologist.
March. In hindsight, March was the best month for me in regard to lingering symptoms. I still had occasionally pains in the same area of my head but settled for taking Excedrin migraine. I was still apprehensive to go to the gym but would soon begin to at least start going on walks, being far less light sensitive. I met with my neurologist for the first time in which he prescribed sumatriptan to take as needed. He also encouraged me to take 665mg of magnesium at night to help with sleep. I’d like to think that the sumatriptan was effective enough at that time.
April. This is where my quality of life has taken a nose dive. In the beginning of this month, I noticed that I had become extremely unbalanced on my feet. I’d feel as though I’m very wobbly and constantly hold on to something (chair, table, wall, door, etc) in fear of falling. It led me to become extremely apprehensive to take a shower let alone drive to and from work. I have, once again, become extremely sensitive to both light and even sound in some cases. I also have been having more frequent pain in the same area of my head. The pain will often feel like an electric jolt that spreads either down my neck or to the top of my head. It will also sometimes cause an unsettling pulsation in my neck. I followed up with my neurologist who ordered an MRI of my neck while prescribing Nortriptyline to take at night alongside the Magnesium. I’m also scheduled for PT, specifically for my vestibular system (first appointment is tomorrow). The medication is effective but only for so long. The pain still lingered to the point in which I had two more ER visits, both of which resulted in receiving more steroid cocktails. During my last visit, I was prescribed Cyclobenzaprine in which my nurse said it was fine to take it alongside the Nortriptyline at night… never again. I’m soon going to file a grievance with the hospital since I quickly learned that those two meds should not be taken together.
This brings me to today. Still hanging in there. Still waiting to receive my next MRI. I appreciate any insight/advice or other related stories. Thank you for reading!
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2024.04.24 22:15 OurEvanlyFather Sumatriptan and psychedelics

I’m wondering if any of y’all have anecdotal experience with trying psychedelics in close proximity to taking sumatriptan. My wife is in a really gnarly cluster right now and we have tried all of the things that have worked in the past (high flow oxygen w/ non-rebreather, prednisone, melatonin, vitamin D, calcium channel blocker, ice packs, Red Bull, etc. etc.) but nothing seems to be effective anymore. The only thing that provides her slight relief is injectable sumatriptan, and with the frequency of her attacks it’s impossible to wait a full five days. I am wondering what the shortest possible washout period is that has been effective for a cluster headache patient.
On a semi related note, I’m wondering if anyone has had success with ketamine therapy? Or if there are any known interactions between sumatriptan and ketamine. I saw one study that indicated its potential effectiveness.
Many thanks in advance, and my heart goes out to everyone who suffers from cluster headaches.
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2024.04.19 22:25 c10udn3rd How I Cut My Cluster Short

My cluster headache symptoms started late last year, near the holidays, marked by four intense episodes. Two of these episodes were severe enough to necessitate emergency room visits. The diagnosis was clear: cluster headaches. The symptoms were acute, characterized by unbearable pain on the right side, behind the eye and above, making it feel like my eye was about to pop out. This was accompanied by a droopy eye and sudden nasal congestion without any signs of a cold or flu.
Side Note: The first ER doctor was actually excited to see a cluster headache for the first time. He had studied the subject, but due to its rarity, he had never seen it before.
During my first emergency room visit, I received sumatriptan and high-flow oxygen treatment, which alleviated most of the pain within seconds. However, the subsequent prescription of a tapering course of prednisone (80/70/.../20/10 mg) proved problematic as the cortisone severely affected me (tingling legs etc...). This adverse reaction led me to consult another GP, with whom I decided to discontinue the medication.
At home, I managed one painful episode with a Clustran (sumatriptan) pen, which provided significant relief. Additionally, I was able to avert another episode using a combination of massage and cold air blown on my face from my car's air conditioner, which helped stave off the onset of symptoms.
I was able to completely stop the cluster, here is what I have done based on my research:
While this was my first cycle of cluster headaches, I am positive and hopeful that I have managed to break the cycle. I honestly believe that this condition is psychosomatic and that lifestyle changes, coupled with vitamin supplementation, have been effective for me. There is a possibility of recurrence, but so far, the situation is stable and promising.
I don't like being on medication and try to avoid any long-term medication.
I slowly started drinking again, first spirits and then wine (due to the Tyramine and Histamine); and now I have a normal life again, but still taking the supplements and trying to not worry too much about work.
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2024.04.10 03:49 JewelsCee Daily migraines

Hi all! Looking for feedback and any suggestions. Currently under the care of a neurologist who prescribes all of my medications and a workers comp neurologist who is managing symptoms of a bad concussion from work .
Migraines are due to 2 concussions in the last 1.5 years. Most recent consussion was in January 2024 and the migraines are not managed at all and I’m dealing with neuro cognitive deficits.
Medications I have tried : Amitriptyline Topamax Eletriptan Umbrevly Nortryptiline Sumatriptan Gabbopentin Zomig Depakote Ketelorac Nurtec Qulipta Propranolol Zazvpret Prednisone Aimovig
I am currently on Emgality, Qulipta, Cymbalta 60mg and rizitriptan as a rescue (is only about 75% effective). When I am on ketelorac I do have migraine free days. Additionally I get Botox every 3 months (have gotten 3 so far) and just got an occipital nerve block yesterday.
I also take omega 3, magnesium, vitamins d, super b, turmeric. I try to get a massage 1x a week to help with neck pain. Honestly- my diet probably isn’t great and I smoke cigarettes but I’m doing the best I can
Also mri and Ct scan have been normal. Recent eeg showed frontotemporal spikes and I am scheduled for a 24 hour eeg
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2024.04.07 01:35 medstudenthowaway Has anyone else had a sudden drastic increase in their migraines? Were you able to figure out why?

I’ve had migraines almost all my 30 years of life. But at most I had a few a year. Everyone on my mom’s side gets them. I usually have my classic flashing tiny triangles in a c shape that makes it hard to see and half the time that was more annoying than the headache.
I started residency (doctor training) last may and I went home to another part of the country for the holidays. I came back in January and about two weeks later I got a migraine while I was chillin watching cartoons. Thought little of it. Then two days later another. Weird. I was in rheumatology clinic which is like the least stressful. Two in one week is strange. Then… every 2-3 days I was getting a new aura sometimes followed by a headache. But at this point I was off clinic and had to wait 6 weeks to get a weekday off where I could go to the doctor so I made an appointment. I ran out of sumatriptan. Spooked me that they were coming so hot and heavy. I can’t ask for days off and the hospital lighting and beeping is incredibly grating but I didn’t know what to do.
Saw a headache neurologist in March. We chatted and she said my headaches sounded like my normal migraines and I had already had a brain MRI in 2020 for these long COVID headaches. She expressed concern I was developing chronic migraine which is hard to treat. Started duloxetine as a preventative and gave me nurtec for abortive. About 2 weeks later my migraines became every day. And now they’re always painful, always come with nausea and photophobia. Started taking nurtec every other day but all that did was make it harder to see my aura. Few days ago I started magnesium. Today after a particularly bad 5 day headache I started prednisone. So far nothing but reglan (which I feel nervous about taking every day) has made any difference.
I’m just at a loss as to what brought this on. Nothing really changed. Sure residency comes with 80 hour work weeks, crappy diets, wonky sleeping hours… but I did that for 6 months without a single migraine.
Anyways, anyone else have a sudden increase in their usual migraine type out of nowhere? Were you able to figure out what triggered it? Did it go away on its own? Did something work? I know that most people here are probably the ones whose migraines didn’t go away but I’d still like to hear anybody’s personal stories.
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2024.04.06 02:30 Newlyvegan1137 Unspecified inflammatory autoimmune disease

I'm at my wits ends. I've been dealing with my health issues for over 10 years with zero insight as to what's going on. I've seen a ton of different doctors who all say "you seem healthy. Talk to your pcp about pain management if its really bothering you." If anyone gets through this whole thing and has any insight I would be so so appreciative. It's gonna be a long one.
My ana titer is 1:180 Every single other test is always normal. Other than my irons a little low but I don't eat red meat so I try to supplement other iron rich foods. A lot of my symptoms point to POTS but I don't have any known heart issues so every DR just brushes that off and to be honest I kind of do too.
Symptoms from most bothersome to least: -extreme outer ear sensitivity that at its worst made it where I couldn't be in the sun more than about 5 minutes due to heat, couldn't take normal hot showers, couldn't cook in the oven, couldn't sleep on that side and still can't sleep on my right side. -upper back and neck pain -extreme fatigue. I can sleep for any number of hours and feel like I only slept 4 -heavy headedness -brain fog -headaches -GERD -shooting pain that occurs in various areas as random intervals
Dec 2013 I fell on my tailbone on a tile floor
Feb 2014 my left ear starts to get inflamed. It gets super red, hot, and practically doubles in size. It's weeping by the end of the 5th day. -PCP diagnosed inner ear infection on day 2 and me gave penicillin which made everything so much worse. -Childrens diagnosed staph infection on day 5 and gave me clindamayacine. I got significantly better with the IV.
Spring 2014 I missed so many days of school due to being sick with colds, flu, and anything else anyone had, I had to do make up Saturdays to finish my Junior year. -Ear issue happened a few more times on both ears. I went to urgent care and received clindamayacin IV three separate times. Every time it got better.
Summer 2015 another ear incident (right) -I visited a local doctor in the middle of nowhere and was prescribed 2 weeks worth of Clindamayacin. Ear issue got better but didn't feel like it fully went away.
April 2019 most "recent" ear issue (right) that is still currently going on -Went to urgent care and received IV Clin. It didn't get better. I was recommended to see a dermatologist. Derm diagnosed it as Relapsing Polychondritis and they did a biopsy. It came back as general inflammation. Recommended to see a Rheumatologist
June 2019 Rheum said nothing was wrong. -Bloodwork came back normal. He gave me prednisone and I got worse. Everything hurt and my knees were swollen. I had severe moon face.
Early 2020 I saw a new Rheum. -bloodwork came back normal other than ANA at 1:180. She gave me methotrexate for the Relapsing Polychondritis. Then gave me the injection form. -recommended Mayo but was denied.
Early 2020 saw college clinic for complaint of UTI. Test came back negative for bacteria.
Early 2020 saw ENT. -not helful in the slightest.
Mid 2020 saw new Rheum. -Given Imuran. Immediately went down hill. Super sick. Had every side effect within 2 weeks of first dose.
Late 2020 saw Osteopath. -Osteo suspected Lyme disease. I was told bloodwork came back positive. I took Doxycycline and d+k2 and variety of other supplements for 7+ months. No change.
Mid 2021 saw Nutritionist. - Nutritionist gave me a special whole foods diet and supplement regimen. 2 months no change in physical health. Mental health suffered badly.
Oct 2021 saw Internalist. -was given sumatriptan for headaches. Bloodwork came back normal.
Mar 2022 saw Neurologist. -no major tests done. Prick test came back normal.
Late mar 2022 saw ENT. -diagnosed with GERD. Feeling of something stuck in throat. Acid Reflux. Given omeprazole. Feeling comes back often but not as strong.
Nov 2023 saw Derm for what seemed like hives on my chest -diagnosed as folliculitis. Took doxy for two weeks then fluconozole for one week. STILL dealing with it today. Current diagnosis for this is Granulomatous Dermatitis.
Various other things from 2022-2024 -After gyno confirmed no UTI saw Pelvic Floor PT for vaginal issues. -Started talk therapy -Saw psychiatrist for anxiety and depression. Tried various antidepressants. -Seen derm countless times for skin issues and chronic urticaria
Jan 2024 saw Spine Specialist and Mayo Clinic Rheum. -spine dr said tension in my neck was due to stress and recommended a two week vacation to the Bahamas. He recommended Mayo -Mayo did Pelvic MRI, Cervical spine MRI, Chest CT and extensive bloodwork. Everything was normal except schmorls node on T1 and minimal degradation. He told me it's nothing even though I stated that's where a majority of my back pain is. They did not test my ANA.
March 2024 saw Internalist. -again everything was normal. She started me on Lyrica for the pain and referred me to a spine specialist. She did diagnose Interstitial Cystitis due to UTI complaints with no actual UTI
I dont think the Relapsing Polychondritis diagnosis is correct because I havent had any nose or throat involvement. I've googled and googled and read scholar journals and tried countless diets and countless homeopathic treatments and the only thing that has helped has been talk therapy. My therapist is a godsend and I wouldn't be where I am today without her. I'm literally at the point of giving up except after seeing the Mayo Clinic in January of this year my deductible has been met so nows the time to go see a bunch of expensive specialists 😅 if anyone has any information or specific type of doctor recommendations I would be so so happy. And if anyone actually read my whole post thank you for that, I know it was super long.
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2024.04.03 16:59 Substantial-Fee-5266 Please education me about the pudendal nerve

Thank you for reading! Feel free to skip to the end for the crux of my question. I really appreciate your input.
History: 40yo female with history of moderately-controlled dermatomyositis and ILD. 5’3” 150 lbs.
I have about 70% lung function and I’d estimate my muscle baseline hovers around there too. My CK is generally 400-600, ESR around 25, so never quite all the way in remission.
Meds: 10mg prednisone (this goes up and down), myfortic, rituxumab infusions 2-3x/year, IVIG monthly, prograf. Also sumatriptan prn for headaches.
For the past two years have had chronic uti-like symptoms that have come and gone. Some of them may have initially been true utis, but unclear. Lately my urinalyses have been fine except for small amounts of blood.
I’ve had two “flares” with up to 8/10 pain that feels like it is in my urethra. The first time was last summer and my PCP and I thought it was a kidney stone.
Then another bout of extreme 8/10 pain recently that lasted about it a week, which then diminished to 4-5/10 pain, followed by a few days of the weird st symptom of my life- constant feeling of clitoral pressure/near orgasm. I am finally now experiencing very little pain, but urgency remains.
I now have a urology PA who has indirectly suggested this is psychogenic, which really upsets me because, besides having next to no physical work up as of yet, I am if anything an under-reactor to my complicated medical issues and don’t have any psychiatric history. The only tests I’ve had are urinalysis and a bladder ultrasound that shows I’m emptying normally.
I have not even a pelvic exam. I do have a cystoscopy scheduled, but she told me she was sure we wouldn’t find anything. Lovely.
My constellation of symptoms to me appear consistent with possible pudendal neuralgia. My symptoms are absent first thing in the morning and get worse throughout the day, and worse when sitting. Localized muscle relaxers don’t help at all. Azo helped a little for a few days but then stopped working. Both of my big urethral flares came on during dermatomyositis flares (CK 1000-4000). I also drive up to 100 miles per day for work so sit a lot.
I asked if we could look at this further to rule it out and the PA said no. She said it can’t be my pudendal nerve because a) I haven’t had pelvic surgery along the nerve and b) I don’t have numbness in my anus or thighs.
I do have some training in anatomy/physiology, and my understanding of nerve pathways does not jive with her assertions. I realize I’m not a doctor, but then again, neither is the PA. Can someone with real medical training clarify?
Thank you for reading!
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2024.03.26 22:41 JefeStoner Magic mushrooms were a lifesaver this cycle

Usually get a cycle every 2 years around the end of wintebeginning of spring with daily attacks that usually last a little over a month. Tried mushrooms this go around since my first few attacks were much more severe than they usually are and can say I went about a week between attacks after the first dose and was able to completely rid my cycle after a second and third dose. I was taking 2 gram doses each time and refrained from sumatriptan and prednisone.
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2024.03.12 15:44 lexripic Rash spreading everywhere, no known cause

Hello - I will try to add images in the comments, but basically I will try to sum things up. I developed a mild rash (what thought was hives) Friday 3/8. It got consistently worse over the weekend. Visited the ER Saturday 3/9 and had a low grade fever (100.1). They gave me 40mg prednisone and sent me home with a 5 day supply of 40mg/day. Rash continues to spread even while taking the meds as directed. It is literally from the bottoms of my feet to my face. It is on my ears, nose, neck, chest, back, sides, arms, very bad on my thighs, and on my feet. A dermatologist and my allergist think that it is some sort of immune response to something unknown. I will add some other general info because I am wracking my brain trying to figure out what could have caused this 2/26: Got nexplanon birth control implant (got it removed 3/11 just to eliminate moving factors) 2/28: Noticed a large bite/bump on my ankle 2/29: Went to allergist, was given Clindamycin for the unknown lesion on my ankle 2/29-3/5: sick with presumably a cold, mild cough and head congestion. no fever. 3/7: received first allergy immunotherapy shot (i had them as a child and never had a reaction)
Then I broke out 3/8. It has gotten consistently worse and doesn't seem to stop spreading. It is unbelievably itchy and my only current answer is to “wait it out." I have no other symptoms besides the low grade fever. It is unbelievably uncomfortable and nothing is helping and l am at a loss.
Background info: I am a 24 year old female, about 5’ and 130lbs. My only underlying health conditions are migraines, for which I’m on Sumatriptan 25mg, and asthma, for which I have a rescue inhaler and a daily inhaler. I do have a history of allergies to pollen and animal dander, hence the shots. I am a recent non-smoker (vaped 2021-2024, quit about six weeks ago yay).
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2024.03.07 23:57 AntelopeAsleep8525 Losing hope!

I’ve (27F) am coming into my 10th year of having cluster headaches, and week 4 of the current cluster (usually 6 weeks long). Headaches usually come at 11pm, then 6am and again around 8am occasionally. I find the sumatriptan injections work the best for me, and have recently discovered Red Bulls also do (thanks to this group!).
I have been taking Verapamil - 2x 120mg tablets daily - though don’t think it is helping much. Prednisone worked while taking it but the headaches just come back once I stop the course.
I have seen a neurologist and they suggest just keep going with the Verapamil and injections and essentially just live with it! I’m finding it hard to function during the day due to tiredness and shadow pains. I also find it difficult to hold onto hope of the CH ever ending and it’s making me double think the career I love and having children in the future for having to deal with this forever.
Just curious to see how everyone else gets through their days and how to handle the uncertainty and hopelessness of when this will end!
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2024.02.27 14:42 twig973 Wife going through CH period, need advice

Hello clusterheadaches
I can’t even begin to imagine the pain you all go through when you have a CH….it kills me watching my wife suffer through it and I feel so helpless.
My wife is a 35F who has been suffering from CH since she was a child (7 years old or so). It went undiagnosed for years until we got her a new neurologist who diagnosed her with CH. Her neuro has been giving her Botox injections on her neck, face, and scalp for the last few years along with a dose of steroids and while it hasn’t eliminated them, it has made them somewhat manageable.
However, the last month has been excruciating for my wife. She’s been getting 5-9 CH a day. Steroids aren’t working. Oxygen isn’t working. She’s seeing her neuro on Friday to discuss what next steps are but there in the meantime, she was prescribed Nurtec to help break the cycle along with 150mg of Lamotrigine.
What’s been strange lately is that when my wife tracks her sleep cycles, as soon as she goes into REM sleep, it’ll trigger a headache without fail. Additionally, she’s been snoring a lot more lately. I don’t know if she’s possibly undiagnosed with sleep apnea and a CPAP machine woiud help.
I’m just trying to find relief for her and hope somebody has any insight or recommendations for things to try. Or an opinion on the sleep apnea / CPAP machine.
Thanks so much for reading this.
Edit: Wife just quickly texted me the following:
Ajovy worked in the past and stopped
Never responded to verapamil and caused hypotention
Sumatriptan worked in the past but eventually stopped working
Dexamethasone and Prednisone has worked in the past but caused Cushing's
Ubrelvy worked but now only helps one headache and another will come back
Nerivio used to work now it won't
Lamotrigine worked this last round
Shotgunning a red bull used to work
Weird because I usually get 1 or 2. Now I'm getting 8.
Also 50,000 iu of Vitamin D right now and mag ox and mag sulfate as well
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2024.02.27 14:40 twig973 Wife is in cluster period, need advice

Hello clusterheads
I can’t even begin to imagine the pain you all go through when you have a CH….it kills me watching my wife suffer through it and I feel so helpless.
My wife is a 35F who has been suffering from CH since she was a child (7 years old or so). It went undiagnosed for years until we got her a new neurologist who diagnosed her with CH. Her neuro has been giving her Botox injections on her neck, face, and scalp for the last few years along with a dose of steroids and while it hasn’t eliminated them, it has made them somewhat manageable.
However, the last month has been excruciating for my wife. She’s been getting 5-9 CH a day. Steroids aren’t working. Oxygen isn’t working. She’s seeing her neuro on Friday to discuss what next steps are but there in the meantime, she was prescribed Nurtec to help break the cycle along with 150mg of Lamotrigine.
What’s been strange lately is that when my wife tracks her sleep cycles, as soon as she goes into REM sleep, it’ll trigger a headache without fail. Additionally, she’s been snoring a lot more lately. I don’t know if she’s possibly undiagnosed with sleep apnea and a CPAP machine woiud help.
I’m just trying to find relief for her and hope somebody has any insight or recommendations for things to try. Or an opinion on the sleep apnea / CPAP machine.
Thanks so much for reading this.
Edit: Wife just quickly texted me the following:
Ajovy worked in the past and stopped
Never responded to verapamil and caused hypotention
Sumatriptan worked in the past but eventually stopped working
Dexamethasone and Prednisone has worked in the past but caused Cushing's
Ubrelvy worked but now only helps one headache and another will come back
Nerivio used to work now it won't
Lamotrigine worked this last round
Shotgunning a red bull used to work
Weird because I usually get 1 or 2. Now I'm getting 8.
Also 50,000 iu of Vitamin D right now and mag ox and mag sulfate as well
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2024.02.17 22:56 ingjor Status migrainosus

I've been having non stop migraine attack since 31 january. Went through MOH detox in january. Removed triptans, nsaids and paracetamole for 3,5 weeks. Took tramadol for backpain so i wasn't completely medicinfree. The attack started abrupt. And is still going on. I was hospitilized this week for the attack. They said the main goal now is to end this attack. And do a MOH detox later when im stable on migraine medicine. This is day 15 on rescue meds. Triptans, nsaids and paracet. I have to take high doses. And it wont break the cycle im in. It only take the top of the pain, and the pain comes back. On the hospital they gave me some other remedies. Morphine. It was the only drug that made all the pain go away. But it did Come back unfortently. The drugs i have tried: prednisone 60mg x10 days, nozinan, ketoralac, diclofenac, blood thinners, valium, oxygen and morphine. I cant manage without medicine. Now, at home im taking sumatriptan 100mg x3 and paracet 1g x4 and anti nausea meds. I have morphine rectale in case it gets bad. The only thing i did not try is IV cortisone. Maybe i can try that on monday. But my question is, how do i know (or the doctors) if this is status attack and not MOH? Maybe it will go on forever if its MOH? I'm currently on metoprolol as well, and titrating the dose. Can this help to ease whatever this is? Please help 🙏 feeling hopeless
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2024.02.17 22:53 ingjor How to know the difference between status migrainosus and MOH?

29y female. Chronic migraine. I've been having non stop migraine attack since 31 january. Went through MOH detox in january. Removed triptans, nsaids and paracetamole for 3,5 weeks. Took tramadol for backpain so i wasn't completely medicinfree. The attack started abrupt. And is still going on. I was hospitilized this week for the attack. They said the main goal now is to end this attack. And do a MOH detox later when im stable on migraine medicine. This is day 15 on rescue meds. Triptans, nsaids and paracet. I have to take high doses. And it wont break the cycle im in. It only take the top of the pain, and the pain comes back. On the hospital they gave me some other remedies. Morphine. It was the only drug that made all the pain go away. But it did Come back unfortently. The drugs i have tried: prednisone 60mg x10 days, nozinan, ketoralac, diclofenac, blood thinners, valium, oxygen and morphine. I cant manage without medicine. Now, at home im taking sumatriptan 100mg x3 and paracet 1g x4 and anti nausea meds. I have morphine rectale in case it gets bad. The only thing i did not try is IV cortisone. Maybe i can try that on monday. But my question is, how do i know (or the doctors) if this is status attack and not MOH? Maybe it will go on forever if its MOH? I'm currently on metoprolol as well, and titrating the dose. Can this help to ease whatever this is?
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2024.02.14 17:51 out2sea4me intermittent/seasonal NDPH?

Hello! I'm curious if anyone here has also experienced NDPH that has gone into remission and came back?
My story begins in October 2014, woke up with a headache out of the blue and it lasted until March 2015. It was one-sided, pressure-like pain around and behind my left eye and left forehead, sometimes in the cheek. The pain was 4-5/10. I had no idea what was going on. I had never had a one-sided headache before and because it was also in my cheek, I wasn't quite thinking it headache or migraine. After a few months of seeing an ENT thinking it was a sinus issue, they said this is a migraine and prescribed me Nortriptyline. I took it for a few weeks, it was giving me unmanageable insomnia, so I stopped taking it, and the pain seemed to vanish as quickly as it came.
I had no pain after March 2015 until October 2015, when the same pain appeared out of nowhere. It was slightly worse this time, 5-6/10 and sometimes migrating to my jaw. I was more aggressive with treatment and tried Indomethacin (not hemicrania continua), Topomax (couldn't tolerate enough to get to a therapeutic dose), and then started on Amitriptyline in March 2016. After a few weeks on Amitriptyline, the pain went away, but it also corresponded with when it disappeared the previous year, so it was hard to attribute it the success of Amitriptyline. Nonetheless, I was terrified of another October flare-up, so I stayed on Amitriptyline.
Between March 2016 and October 2023, I had no flare-ups of what I now call NDPH. However, I started getting what one might consider a normal migraine, one-sided head pain that lasted one or two days. 70% of the time, ibuprofen would help (and as many of you probably know, when in a a proper NDPH cycle, ibuprofen does absolutely nothing). The "migraines" started coming at a greater frequency around 2021, so I started trying Botox, which didn't seem to be changing the frequency.
Then, October 4, 2023, I woke up with a "migraine" that ibuprofen didn't touch and four months later, it is still here. The pain ranges from a 5-9/10. I attribute this to amitriptyline no longer working? Or maybe my NDPH was self-limiting and just decided to come back now? I have tried so many treatments since October and nothing has worked. The list is: Topomax (again, couldn't get to a therapeutic dose), 3 months of Emgality 300mg injections because my neuro thought the seasonal pattern was hinting to cluster headaches, Indomethacin for 6 weeks (still not Hemicrania continua), Gabapentin, completed my fourth round of Botox, Prednisone burst and taper, Steroid nerve blocks, lidocaine nerve blocks, 2 Depakote infusions, 2 different ER migraine cocktails, Maxalt, Nurtec, injection sumatriptan, and one DHE infusion. None of these helped at all. Currently trying 60mg extended release propranolol. I'm still on the amitriptyline because it at least helps with sleep, and I've been advised not to come off it while I'm already in a tough period because it might be hard to taper off of after 7 years.
The pain this time has been much more debilitating than the two previous rounds. During prior periods, I was able to still exercise, I feel totally disabled this time around and haven't worked in two months. I'm anxiously awaiting March/April to see if it goes away on it's again. After experiencing two weeks of insane fatigue, I convinced my PCP to run an Epstein-Barr virus test, and I am testing positive for an active EBV infection, which is very common in NDPH people-- still doing more testing to determine if it is active re-activation or has been chronically active. I'm planning to do an IV of methylprednisolone and round of Doxycycline once we learn more about the EBV.
Has anyone else had seasonal NDPH? Or a similar remitting-recurring pattern? I feel really grateful to have not suffered consistently the past 10 years, but it is so frustrating every time this headache returns, especially when it is returning more painful every time. Wishing you all the best and we get the pain free days we deserve.
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2024.02.06 16:27 Hindsight_Visuals Responding to people who say…

“Oh! Shoot. My wife gets headaches too. Hope ya feel better!”
Nothing makes me more furious.
How do you respond to people, coworkers, friends, extended family who say things along these lines? Obvious I’m not going to explode in their face about it but how do you politely say:
“Oh that’s unfortunate, has your wife also stabbed herself with sumatriptan injections hundreds of times, tried a prednisone loading dose, had to stab themselves with syringes in the ass, or taken muscle relaxers and had bad withdrawals, or have chronic dry mouth and spend hundreds on oxygen every year? Or has she had to find GammaCore, something that works for me, only to find out they make you subscribe to the device and turn it off if you don’t want to pay thousands for it every year? Has she gotten 10 attacks in a day where you may as well not even be a person anymore, but a walking zombie injecting, ingesting and huffing oxygen, energy drinks and sumatriptan shots? Have she ever turned to cocaine, because she thought a different stronger vasodilation method would be effective, only to realize it makes you feel like shit about yourself, but actually kind of works 25 percent of the time? Has she ever had to force herself to take mushrooms so that there’s a good chance she doesn’t have to have this cycle, but she hates tripping especially by herself? Has she missed out on countless days, hours, minutes with friends, loved ones, and work colleagues? Or what about dreading that vacation you guys are taking soon, because she’s not sure if she might get hit 5, 10, or 30 times with no support except caffeine?”
Yeah me neither. Fuck me right
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2024.01.19 22:04 Patient-ssi I'm sure some of you can relate.

3 months ago I started having issues with my back. I had to take several medications (fluoroquinolone 50mg, prednisone 5mg and sumatriptan XR for 4 months) to combat the side effects. However I was feeling better for a few weeks when I was due to go on my period.
I woke up one morning to go to my regular doctor and told her my back was completely fine. She prescribed sumatriptan XR for my period. I went to sleep that night feeling better and that was the only time I had ever had the side effects.
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2023.12.26 23:34 MercLim54 Psilocybin / Magic Mushrooms

Hi all,
I've been dealing with CH (episodic) since I was 12 or 13 (I am 29 now). I've tried pretty much everything that is known to help with this condition:
- Verapamil, Prednisone, Epival, Lithium, Vitamin D regiment, Sumatriptan, DHE, O2, etc.
- I've tried the brain freeze and red bull techniques, but didn't work.
- I also got the Gamma knife treatment (radio surgery) back in October. My neurosurgeon told me that it could take 2 to 6 months before seeing any result.
I am in the middle of a cycle rn, which started 2 weeks ago. Probably the worst I have ever had. The pain intensity is higher (that I thought wasn't possible, but I guess it is) and one attack can last 12h. I am starting to wonder if the gamma knife treatment has something to do with it because I used to get normal attacks until last year (3h max, 1 to 5 times a day).
Anyway, the point of this post is that I am running out of ideas. I've always been a positive person, but I'm starting to feel like my morale is deserting me.
I've found that some people use magic mushrooms/psilocybin and it seems to work. I wanted to know your experience with this alternative. How does it work? How much should I take? What kind of mushrooms? How to get it (I live in Canada)?
Thanks a lot and happy holidays to everyone.
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