So, I wanted to join so I could talk with others who know what it's like. As you all know our disease is incredibly rare, I've never met someone in real life who also suffers from this hell we call cluster headaches. I'm 26, I got my first one in December 2007. ( I'm Chronic and have been since day one) I remember it so clearly, I thought I was having a brain anuresum (sp?). Went to the hospital, had a full work up done, Mri of my brain to rule out a tumor or something and it was all clear and probably like many of you I was told I had migraines. So over the next 6-7 months I was treated like I had migraines, given topamax, no success, then a higher dose, again no success, again upped the dose, nothing. Then they added amitriptaline, still nothing, then propanol, still nothing. I was 18 and read 1/5 just canr be treated so I figured that had to be me since these didn't work.

Mine and probably many of yours is progressive. The first year or two I would only get one a day, maybe twice a week id get two, but still that 90 or so minutes was enough to wanna blow my brains out. You guys know the feeling. but atleast after that one I could say pretty confidently I'm good now no more today unless I did something to trigger another. Then the 2010 I was up to 3 a day, every single day. Can't say I really ever went a day without some sort of headache, a good day would be shadows and tightness. In 2011 it got so bad. I had a headache all day long, it was crazy, I would suffer though an entire headache and when it would start getting better I would get one on the left side ( sometimes I'll get them on the left side also). That was the absolute worst, sitting though all that pain and thinking it's finally over and getting another one. All of 2011 my day would be like this, headache, then the full blown attack would go away and I would have bad tightness and shadows and then another attack and it would go on all day, I was at the end of my rope.

so around June I said what do I have to lose I'll go back to a doctor. So again he said migraines but put me on verapamil, 240mgs ER. He said it could take up to 6 weeks to start working ( ive realized they say that about every treatment and it holds little weight). I took my first dose at night, the next day it was like magic, my head was clear, no shadows, no tightness, and best of all no attacks. I was so excited. I didnt get a hit for about 6 weeks if not 8, it was great. for the next year things were pretty good, the frequency was greatly reduced and I had long periods without any attacks, and a really great period of about 3 months with almost none but then bam, they came back and it was almost exactly one year to the day. it jus stopped working, not gradualy like one or two a week etc, I was right back to where I was before i started, so he upped my dose to 360, and boom I was back to doing well again. The year had its ups and downs but it was so much better then before I started the meds, but then again, it was spring and I went though this perfect period again with basically zero full blown attacks and again boom, it stops working, 1 year later almost to the exact day. Again they didnt gradually come back, literally one day everything was perfect and the next hell. So again he upped the dose, this time to 480, it didnt work, so he went to 720 and again I was back to a semi normal life and again the same exact thing happened. It stopped working exactly a year later. My doctor said basically we block one pathway of pain and the brain finds a way around it and creates a new pathway. But even when the meds failed and the attacks started again they kept the intensity down, still to this day I havent had a hit like I did before I started the verapamil. But that really doesnt mean much, theyre pain is still so horrible its impossible to describe. You guys understand it though.

So I was basically maxed out on the verapamil, we tried going up to 1080mgs ed and it did nothing, So i was in a different state going to school so i found a new neuro, but he only did headaches. He was surprised i had success with the ER version, he said most of his patients do not and he basically only uses the IR. So he switched me to the 120mg verapamil IR pills 4 or 5 times a day, I cant remember its been a while but the total daily dose was much lower then the 720 I had been taking. This made my head even worse. When the 720 failed my attacks  took on a new pattern, every morning when I woke up, usually 8am they would start and contunue until about 2-3pm. I had to drop 3 classes and lost about 8 thousand dollars dropping from fulltime to part time. He also introduced me to oxygen, i had never heard of it but I loved it, instead of being in agony for 30-90 minutes I could abort the attack in 5-10 minutes but the downside is they would rebound sometimes as fast as 10 minutes after aborting the first one, i guess my head was gonna make sure it had the full attack regardless of what I did. The only downside of the oxygen is i was getting so many attacks I would go though a bottle of oxygen a day, so i had to go fill them up every few days. Anways the verapamil wasnt working, the IR made it even worse so I went back to my 720 ER an he added lithium at 150mgs per day, he was very consrvative, Along with that he had me doing rounds of trigger poiunt injections, those were so painful, im familar with needles and they dull after the first use even in soft tissue let alone the hard areas in my scull he was shooting into, but this guy was using the same needle the entire time giivng me probably 25 injections all around my skull, neck, shoulders, and face, it really sucked. 4 rounds of those and  it did nothing. This was up to november or so and when I went home I had an appt with one of the best CH specialists in the country at harvard, decan medical center. I spoke and told her what I know and she said "well you did your homework, you know all we know" And gave me a suggestion for a supra orbital nerve stimulation but after talking to my neuro he said I wouldnt be a candidate as i didnt respond to the nerve blocks so it wouldnt work, so I was shit out of luck. One of the best in the world told me I had basically the same knowledge as her and she had no suggestions for me besides the above.

He wasnt being aggressive enough with the treatments, I was seriously losing it.I was always complaining to my primary about my head so she thought shed ake a wack at it. She kept the verap, lithium and first added some depakote  that didnt work, next she tried adding gabapentin, that didnt work. We dropped those. I always had trouble sleeping, she doesnt know alot about these like neuros do but she is the best and most caring doctor youll ever find. Anyways she thought maybe its because I dont fall into deep sleep, my mind never turns off so that could be causing it. We all know thats not the case, lack of sleep is a trigger but not the cause of my cluster headaches. Anyways she prescribed some ativan to help me fall asleep, for some reason I tried taking it in the morning and it stopped the rebound headahces, Success!, kinda. Still got the first attack of the day but id take my ativan and abort it with oxygen and it wouldnt come back. So thats progress. So I was researching one night and i found some case studies using clonazepam with success and read some stuff by dr peter goadsby and how clonazepam decrease pain treansmission along the trigeminal nerve. And this is why my doctor is great. I can suggest a treatmetn and present my research and she'll prescribe the drug.  And this put my Ch into remission for a decent period of time. And shes nice enough to take it upon herself and do some research when she has probably 100 other patients and finds another drug for intercranial hypertension, acelozolmide, so we add that also, and its effective because when I tried to stop it my head went nuts for 2 weeks despite the fact I started taking it again as soon as my head started acting up. She really is great. So I was taking 2mgs of the clonazepam am and 2mgs pm, everything was great for a while at some point she upped the lithum to 300mgs also. So ofcourse my attacks came back after a while so  she immediatly upped my lithium to 900mgs, overall she gave me a good year, there were some bumps here and there but I had a pretty good quality of life, but all these meds have there side effects, they really messed me up. But as you all know if you have a choice between no attacks but some crappy side effects, or the unexplainable pain these cause all day but no side effects its a no brainer, ill take the side effects and no headaches. She also prescribed the sumatriptan injeable pens, 6mgs and what I would do is shoot the pen into a vial as i didnt need a full 6mgs, all that would do is give me a ton of side effects, all i needed was about 1.5mgs so i could break up 1 pen into 4 doses and i would draw them up them into insulin syringe and make a box of 2 pens into 8 pens. When I’m getting 5 hits a day and I get 2 boxes a month ( 4 pens) so if i took them like i they came it wouldn’t even get me though one day, then what do i do for the other 27 days of the month?  after my 2 boxes insurance covers its 214 dollars a box, 107 dollars to abort a headache is just crazy. But ike I said I dont take them like they come. The shots really helped alot, I could go out and take them with me and not worry at all, if i got a hit Id take the shot and it would abort in just a few mins. So my quality of life really went up alot with these. So It took 8 months to get them back into remission, the majority of the time with the neuro, but the primay care doc was the one who was able to fix them, who would of thought?

So now here I am present day, about 10 weeks ago the meds failed after a pretty good year, but with some crappy side effects, Im maxed on the verap, so she upped the lithium to 1350. it helped a bit, but not much. basically it kinda took the full attacks away but the shadows are constant, constant tightness, anyways that change lasted about 3 weeks before my brain found away around it and I went back into hell. I have no quality of life. Right around bed time each night i get an attack, alot of nights about 2 hours after I fall asleep the beast will wake me up, then as soon as i get up within 20 minutes it starts, i abort it with imitrex and 45mins-2hrs later it returns, i could have 5 by noon and at that point on days like that I go to urgent care because I found something that works for me, every single time with very little side effects. Something thats not supposed to help, neuros and the CH community have basically said it doesnt help CH. But opiates work as a preventive for me. Not an abortive, but a preventive and it works better then my verapamil during its best periods. Im not sure why, but doctors have no idea why verapamil works, or lithium, or any of our hand me down meds. But it works. ill go to urgent care in pain between headaches after a shot of imitrex, the shadows start coming back, the tightness, and then i take 20mgs of oxycodone IR and within 10 minutes its like I have a normal head. Its incredible. Theres no sides to it, other then needing to be careful as it can be addictive. But were desperate people, if a doctor told me my disease would go away if i shot myself with a gun id do it without blinking. The 720mgs of verap, 1350 lithium 250 acelozolmide, 4mgs clonazepam gave me terrible side effects. It completely destroyed my appetite, Im never hungry ever, it all be 230pm and ill ask my fiancé if ive eaten yet and shell say no, I have no need for food, ive lost 22lbs just in the last 3-4 months. I used to be pretty smart, the brain fog from the verapamil and the clonzapam have me to the point where I cant think of the right words when I’m speaking, I can never win an argument because I cant think fast enough anymore, i used to be a very quick thinker. my memory is terrible. Me and my fiancé will have a conversaton and a day later she will ask me about it and I wont remember it.The lithium has changed my personality, Before lithium at family parties id be talking to everyone, telling them about my business I’m gonna start when i finish college, just be a apart of every conversation. Now i sit on the couch waiting until its been atleast 2 hours so I can leave and go home and watch tv. Those plans i used to tell everyone about have become a reality, i run that business now but I have no desire to talk about it. When my mom comes to visit I dont even wanna talk to her, in the past I would talk her ear off.

So me and my primay decided, she was very reluctant to prescribe opiates cause the DEA is berating down everyones neck, I told her if anyone gives you shit about me tell them I have, as stated by doctors “ the most painful condition known to medical science” “ The most pain the can be inflicted on a human being. If anyone has justification for pain killers its me having this disease. I was starting to seriously think about ending it before she gave me the script. Theres two parts to this diease and what it takes away from you. First theres the pain, the agonizing pain, multiple times every day, horrible horrible psin that nobody around you can possibly understand, they say they do but they obviously dont when they get on your case for not coming downstairs to say goodbye to someone you see every week when you’re in the middle of an attack. Or when on christmas eve during the night I get 4 hits lasting over an hour a piece an my parents keep yelling up to me and asking why I’m not downstairs opening presents, like i wanna be upstarts but I’m exhausted from not only getting almost not sleep, but th attacks take even more energy out of you, and because I got no sleep and thats one of my triggers my head is tight borderline headache starting etc. Nobody understands, and thats why I wanted to join this forum, cause you guys get it.  Then theres what it takes away from you, i spent 6 years and roughly 160k getting two BS degrees, but due to my disease I cant apply or hold a job, last time me meds failed it took 8 months to get my head back udere control again, During that time I would have missed roughly 95%og my work days, I would have been fired or something real quick. During that time the attacks would start when i woke up and last till 2-3pm,om really bad days they’d just go all day. So 8am-2pm is prime time for a corporate job, o any white collar job my degrees set me up for. Scared to go out to breakfast in the mornings, scared to leave the house in general. Needed to be near my bedroom and oxygen tanks. It takes your life away. We just exist, laying in my bed, getting a hit, abortng it, and repeat. If it wasnt for my parents Id be acrewed, I always wanted to be involved in real estate, i watched how much money my landlords made off us during college. So my parents knew I coulnt hold a job, even if I did get a period of remission and got hired at some point they would come back and id have to stop working, with a cycle like that I could never advance. So they gave me about 30k as a loan to buy a house, I fixed it up and sold it for more then double and thats what I do today, I flip houses. If my head is acting up I’m the boss so I just odnt go to work. But it got so bad these last 10 weeks I could hardly go in at all, i had to leave it all up to my workers. its not ideal but it works. I like this though I never wanted to work for someone else i wanted my own business but it would be nice to have the ability to get  a job where i get a pay check every single week instead of a big fat cechk every 2 or 2 or 4 months depending.

So now I have a plan, Im tapering off all the drugs except the clanazepam because it does help me sleep and  ive always had problems falling asleep quickly, but even that we might replace with something that isnt a narcotic. So about 17 days ago my doctor gave me enough oxycodone for 3 weeks at 30mgs 3 times per day to start the taper, I had some old IR 120 verapamil so I dropped from 720 er to 540mgs total, 1 360 er and 1.5 120 IRs, then the lithium, i was taking 1350mgs, and I dropped down to 900mgs, and I dropped the acelozolomide from 250mgs to 125. This goes to show how well the opiates work as a pregemetive for me, before starting the oxy and being on a handful of max doses of these meds I was in a living hell, if i dropped the dose without the oxy it would have bee catostropic my head would have went wild. but in the last 3 weeks I havent had one full blown attack maybe twice i had a very mild headaches. On monday I go back an i hope to God she’s still on board with the plan and willl give me a refill so i can drop the verapamil to 360, the lithium to 450, and drop the acelozolmide completely, ill stay at those doses for probably 2 weeks and depending on what she says ill either drop both completely ( what id like to do) or she will probablly want to go slow and drop one at a time. So I’m looking at either 2-6 weeks before I’m completely off everything except the oxycodone which i plan to stop also which ill get to next.

So then comes my plan, I tried this once before but I was on verapamil which most of the time renders the treatment ineffective. Im sure alot of you are firmilar with psychedelics and how they can send this headaches from hell into remission sometimes for two years. Hell id take 3 months and repeat every 3 months, but 6 months or a year would be  a dream come true.I can only imagine what its like to have a normal head, its been nearly 10 years, i dont remember what its like to not have attacks daily and constantly have shadows an tightness in between attacks. Its been so long I dont remember  what a life without pain is like. It would be a dream come true to not go to the doctor every month, to not make 4-6 trips to the pharmacy every month, to frantically run out to the pharmacy because I forgot to pick up my meds ( what Im about to go do, i forgot). To not be on first name basis with the pharmacists and just be one of those people who goes to the pharmacy once in a grand while when theyre sick. Thats just the pharmacy part, i could go on and on and on about how my life is GONNA change when this treatment is successful. I have to think positive, that its gonna work. If not its back to opiates which isn’t bad, they have some minor side effects but the biggest problem is finding a doctor to prescribe them. All docs are so scared about the DEA now many refuse to rx narcotics. So many people are under treated or worse untreated, despite having MRIs, records of failed surgeries etc and they cant get a few vicodon everyday. Let alone me, a young guy, thats gonna make it that much harder if my doctor doesnt want to prescribe them to me anymore and send me to pain management. All ive read is horror stories about pain management, people getting kicked out without breaking a rule, finally finding a regime that works and the doctor wants to decrease the dose etc. Lets hope I dont have to deal with all that and i can knock these things back to the dark hell hole they came from

Thanks for reading, and id love to hear what others have went though over the years and whats working for you these days. Or if anyone has had success with the treatment I’m planning.

Ya i thought i was really weird also. I used to play rugby, which comes with alot of injuries so id get like 5 day scipts of 5mg oxycodone or hydrocodone and at first I thought hmm, maybe since i have this injury my brain is more focused on that and thats why im not getting headaches, it took a while for me to put two and two together that it was the opiates that were actually preventing the attacks. When i had really important things like finals my doctor would give me enough to take the days of the finals and I would have no attacks, just a clear head. she was very reluctant to prescribe such meds. But she finally realized how desperate we are, how theres jut nothing out there for us, to have a cure/treatment and not prescribe it is just unethical and straigtht up mean. Luckily she gets really bad migraines so she understands to a degree pain in ones head. I actually have tried indomethacin, the doctor who put me on the verapamil gave it to me as an abortive. It knocked me out bad, never took it again. That was about 6 years ago. Does taking it daily prevent your attacks? Im reallly only interested in preventive meds, I know how to abort them, but man that 5-10 minutes can be the most painful, longest and embarrasing in my life if im in public. After almost 10 years i still ask why me? why am I part of the .01%, better yet, why am i part of the 10% of that .01 that gets them chronic. Eposidic sounds absolutely amazing, going though a cycle then being normal for a period of time. Id kill for just that. I know the cycle is terrible, my cycles going on 10 years lol, but still that pain free time and time as a normal person with a normal head, id just like to know what its like.

Hoppy wrote on Jul 9^th, 2016 at 5:23pm:

He's right, ya know, but I'm another one who got great relief from them.

Then I saw the road I was on and decided CH was better than where I was headed.

Welcome aboard, Whyme, and there's a wealth of knowledge and experience here. We're all in this together so we might as well smile to make a better future for everyone.

A little giggle don't cost much, either.

AussieBrian wrote on Jul 10^th, 2016 at 4:50am:


Before I went to my last docs appt about 3 weeks ago i spent weeks reading peoples accounts on using opiates to prevent CH, and I read many people who had been chronic for decades and were put on a cheap drug like methadone and have beeen in  remission for 8 years. Id really like to know how many people this could help.

So I got my script, it was for 3 weeks, 120 oxycodone IR for 37 dollars, insurance wouldnt cover it. So not only does it prevent my headahces, if i take a pill at the first sign of an attack it aborts it, and 120/37 is about 3 bucks, i pay 107 dollars for a imitrex pen ( after I get my 2 boxes insurance covers), 3 bucks vs 107 to abort a headache, and with the oxycodone it doesnt rebound nearly as much, most of the time not at all. But with imitrex it rebounds over and over again. But best be sure my insurance, doc and everyone will give me hell about opiates. If they just walked a day in my shoes, theyd give me anything I thought might work.

Thanks for your input. It really is great to know I have multiple options of treatment left that dont include being attached to a bottle of side effects i mean pills. I have the LSA seeds to try, theyre reallly easy to come by, those magic mushrooms, which im having a very hard time acquiring, The psycadelics seem so promising, just need to find them. Now this D3 regime, and if all else fails, since im maxed out on all first line, second line and basically all medical treaments the discovery of clomid working as a preventitive is great news. At the end of the day I just want to be pain free and live life, id love to do that without pharmaceutical drugs, but taking 1 drug like clomid doesnt seem to bad, not after taking a 7 drug regime for the past few years, some drugs to counter the sides of other drugs etc.

And its great to know im around people who know exaclty what its like, not only the pain but what it does to your life, ive always been such a happy person, nothing gets me down. But this really has worn on me over the past year or two. I just wanna be able to do everything a normal person can, go out and not have to say hey honey do you have my imitrex pens in your bag, or be on the way to home depot and start getting a hit and have to turn around cuase i forgot said pens. Just sick of these things controling me, i wanna be back in control.

How did we get dealt this deck of cards? I guess someone had to, but its such a rare condition, how did i get stuck with them, and how am i part of the 10% thats chronic. I know either way it sucks, but to me it sounds like a dream come true to be eposidic, have 2 predicatble cycles a year each for a month or 3,   and then be total normal for rest of the year. Or even if i couldnt predict when the cycle would start. Just that painfree time sounds so awesome. I really hope to enjoy some (without meds) very soon. Im doing well on the opiates, ive kept a log the past 3 weeks and Ive only had 3-4 very mild hits, very mild, to the point where i can still be around people. And then night time, I cant shake the nighttime ones, eveynight around bedtime I get one, well probably 10 of the first 14 days, since then my heads adjusted to the lower doses of meds and I havent had one. But even trying to change my bedtme to an hour earlier my head still figures out im getting ready for bed and one starts, its way to smart! The side effects of the opiates arent bad, they make me a little sleepy, lower sex drive, besides that its all good, im becoming myself again, im getting my personality back again,  Compared to 720mgs of verap, 1350mgs of lithium, those drugs really did a number on my brain, my cognitive abilities, my personality, my memory, i was just so dull, coudnt remember words when i was having a conversation, i went from confident and alpha to indecisive, timid and just a totally different person.

Hey Michael,

Great to hear you're pain free and the D3 is working for you.

Long may it last.

Peter.

Wow thats a crazy story man, glad youre alright though. But ya i know how addictvie opiates are, ive been though withdrawl before, it wasnt that bad because i never spent more then 2-3 months on them. Dont get my wrong it still sucked, but nothing like portrayed in the movies where the guys puking his guts up etc. This time is gonna be like that though, ive been on a more mild opiate for the last 2.5 years for my back, ( on top of clusters i also have a L4-5 annular tear and 3 bulging discs in my back, i really hit the lotto lol) The back pain is enough to cripple most people, but its nothing compared to CH. So we switched from what i was on, it was a partial opiate agonist, to the full agonist (oxycodone) so in 6 weeks or so when i finish tapering off the verapamil and lithium "swim"  will be trying the mushroom treatment, or LSA if he cant acquire those, and i will be detoxing off the opiates after 2.5 years on, its gonna be rough but will taper, and theres comfort meds my doc can give me to make it more bareable, stuff to minimize all the different withdrawl symptoms. So in all this time i havent gotten addicted, my body is physically dependent, but thats completely different then physcologial addiction. I just have about 6 weeks left, hopefully in that time i dont get addicted lol. id really have some shitty luck then ha. 

Im very interested in this D 3 regime, im staying positive though, i have to, the LSA is going to work. But if for some reason it doesnt im glad i have something else to try. Cause after almost 10 years idk how much more of this i can take. Hats off to you guys and gals who have been fighting this war for decades, idk how youve done it.