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Showing content with the highest reputation on 06/11/2020 in all areas

  1. Hi all, First off, I’d like to say I am so grateful to have a place like this that contains so much info pertaining to cluster headaches. The wealth of knowledge and others’ experiences are priceless and have gotten me through some of the most trying times of my life. I am so sorry that anyone would have to go through this pain, but it helps to know that I am not alone in this struggle. Finding this site some years ago was a godsend. My story, oddly enough, began around the age of 15/16 when I experienced my first EXCRUTIATING (which I feel is putting it mildly) headache. It was the most intense pain I’ve felt in my life, always on the right side of my head, behind my eye/temple/upper jaw region, BUT at the time it would last only a couple of minutes. This went on for about a week or two. I saw my family’s primary care physician who brushed it off as a “fluke.” It wasn’t until I was 21 when I was getting a full cycle of cluster headaches, which at the time I did not have a diagnosis for. I have been to urgent care centers, ERs, general neurologists, and it wasn’t until my last cycle (about 2 years ago) that I went to a headache specialist neurologist who diagnosed me officially with cluster headaches. My headaches were so bad at the time that even though I had an appointment with him in two days, I felt I NEEDED to go to the ER to make sure nothing was wrong, get scans of my head and such. When I finally had my appointment with the headache specialist, he told me that everything that I had been prescribed up until then by doctors, who had no idea about cluster headaches, was garbage. Extra strength acetaminophen, opiates, oral imitrex, etc... he prescribed me nasal spray Sumatriptan and gave me advice on breathing 100% O2 to abort an attack. I am now 27 and my cycles have come almost exactly every 2 years. They start around August and last about a month and a half to two. The headache typically lasts anywhere from 45min-3hrs(at most). The first inkling that I get of a cycle about to begin is a slight pain, almost like a squeezing in my upper teeth/jaw on the right side. It starts off as slight pain, which I now understand to be shadows. It progresses to a full blown cycle, where at the peak I get up to 3-4 headaches in a day. Totally debilitating. 11/10 pain. Feels like my eye is being pressurized to the point of it going to pop. Stabbing pains behind my eye. Feels like so much pressure my skull wants to burst open, so much so that I can feel it in my ear canal. I get the droopy right eyelid, eye gets very red, teary and burns, and stuffy nostril on headache side. I cannot sit still. I have to pace, rub my head, pull my hair. I even told the headache specialist that I’d rather die than experience this forever, which he said is very common with cluster headache sufferers. That was before I knew that this was a cyclical ordeal. The only thing that gets me through these times is the glimmer of hope that this cycle may end, and I can potentially get some headache-free remission time. From my experience these are my known and most common triggers: Alcohol (which I haven’t drank in about a year), red meat (also have been vegetarian for about a year so I don’t eat meat anymore), heavily seasoned foods, any type of smoke (from blowing out a candle, foods cooking on a stove/grill, second hand cigarettes, Mary J), I can toke a little herb off cycle but on cycle it is 100% a trigger for me (also a good test to see if I am still in cycle as it is ending), chocolate, msg (mainly from Chinese takeout), extreme changes in barometric pressure, artificial sweeteners, abnormal sleep schedules. My “go to’s” for aborting a headache include: 100% O2 first and foremost. If I am not at home I do not have a travel tank of oxygen, so at the first feeling that I will get a headache is a BC powder (845mg aspirin, 65mg caffeine) with a coke, which usually, depending on how early I catch it, can keep the pain from reaching a 10 (mostly in the 6-8 range), though sometimes it still gets to a 10 even with the BC. I have nasal spray Sumatriptan, but from what I read, it tends to extend cycles / cause more headaches, so I have yet to use it. I’d rather succumb to the beast than extend my misery by more than need be. Currently I am in a cycle (about 2 weeks and some change in). This one has come earlier than my previous cycles, which are around August typically, so it’s a bit odd. Also, the 3-a-days headaches started after a week of being on this cycle, which is also odd, because the most intense part of my cycle normally starts about 3 to 4 weeks in and is usually a good sign that I have reached the peak and will start heading toward the end of the cycle. As usual, I came back to this forum for motivation to make it through these dark times by just reading through other people’s experiences. Makes me feel less alone because, although my family and friends realize I am miserable, they can never understand the way that anyone here does. I’ve recently read about “busting” since I got an account here. I have been doing my research and may try busting or getting on the D3 in the near future. Hats off to you guys who spent the time and energy in to compiling this wealth of knowledge for everyone. You guys are true heroes. I’m not too sure why I’m sharing this. Maybe because I’ve found some sort of comfort reading through familiar experiences and wanted to give someone else something to read to distract from our ugly reality. I’ve heard that people tend to reach out in times of hardship because there is some solace having someone to share your misery with. I know I have it “easy” compared to some of you with chronic clusters or more frequent cycles / shorter periods of remission. I have the greatest sympathy for anyone experiencing this in any capacity. Much love to you guys. Here’s to wishing for headache free futures for everyone.
    3 points
  2. @dehabel It sounds like what you were prescribed is a medrol dose pack. I have been prescribed one three times last year, once when I got my wisdom teeth out and twice for headaches. I didn’t have any side effects any of the times I took it. They are dangerous LONG TERM. But for 5 days you should be fine. I would take it. Any relief is appreciated. For clusters I would talk to my neurologist about verapamil (a calcium channel blocker), a standard cluster preventative. Safe to take with the vitamin d regimen. It may take a few days maybe even up to a few weeks to see results from the regimen. Don’t give up.
    3 points
  3. https://www.biospace.com/article/releases/phase-2-clinical-trial-of-lsd-for-and-quot-suicide-headaches-and-quot-begins-treating-patients/?fbclid=IwAR2i4zGnc86d3Hijjzi4vxCBi87AlgJvc5Naeh0wlcXhQP-bgCKFc_h5YZM Phase 2 Clinical Trial of LSD for "Suicide Headaches" Begins Treating Patients Published: Jun 08, 2020 MindMed Is Collaborating on a Phase 2 Clinical Trial of LSD For Cluster Headaches with University Hospital Basel's Liechti Lab BASEL, Switzerland, June 8, 2020 /PRNewswire/ -- Mind Medicine (MindMed) Inc. (NEO: MMED OTCQB: MMEDF), is supporting and collaborating on a Phase 2 clinical trial evaluating LSD for the treatment of cluster headaches at University Hospital Basel's Liechti Lab. The Phase 2 trial began recruiting patients in early January and has commenced treating patients with LSD. MindMed is the leading neuro-pharmaceutical company for psychedelic inspired medicines and previously formed an ongoing R&D collaboration with the University Hospital Basel's Liechti Lab, the leading global clinical research laboratory for LSD, to evaluate multiple therapeutic uses of psychedelics and next-gen psychedelic therapies. This new development is part of the collaboration and Dr Matthias Liechti is serving as principal investigator of the clinical trial. Cluster headaches, also known as "suicide headaches," due to the severity of the pain caused are often viewed as one of the most profoundly painful conditions known to mankind. The pain occurs on one side of the head or above an eye and can last for weeks or months. Studies have demonstrated increased suicidality associated with patients experiencing cluster headache attacks. Non-clinical and anecdotal evidence suggests LSD can abort attacks and decrease the frequency and intensity of the attacks. There is a need for new treatment approaches for cluster headaches as current available medications often mismanage cluster attack periods. The Phase 2 trial is investigating the effects of an oral LSD pulse regimen (3 x 100 µg LSD in three weeks) in 30 patients suffering from Cluster Headaches compared with placebo. The study is a Double-blind, randomized, placebo-controlled two-phase cross-over study design. MindMed Co-founder & Co-CEO JR Rahn said "As we continue on our mission to discover, develop and deploy psychedelic inspired medicines, we are very encouraged to bring this potential treatment for cluster headaches using LSD out of the shadows and evaluate its efficacy based on clinical research standards with the Liechti Lab." MindMed's collaboration will assess if there is clinical evidence for a future commercial drug trial through the FDA pathway at a later date. Treatments for cluster headaches may potentially qualify for an Orphan Drug Designation and be eligible for certain development incentives provided by the FDA for rare diseases. Liechti Lab and MindMed intend to learn how they can make the administration of LSD more targeted for cluster headache patients through this Phase 2 trial and future clinical trials. As part of the collaboration with UHB Liechti Lab, MindMed gains exclusive, global use to all data and IP generated in the Phase 2 trial of LSD for cluster headaches.
    2 points
  4. Acknowledging spiny's strong knowledge, I'm not sure I agree. There is probably no question that triptan overuse will have many bad effects, probably including rebounds and maybe including extending cycles. On the other hand, so much of this is guesswork. Look at your current cycle--came sooner, has been more severe (so far). If you were using triptans (now or before), you might be inclined to attribute it to that. My daughter has virtually never used triptans, but her cycles seem to keep getting longer and she has plenty of what seem like rebound attacks. (Many people get wicked rebound attacks from busting, which we call "slapbacks." That's a different situation for many reasons, but not completely un-comparable.) So I would say that if you're heading for a long one that your O2 + caffeine isn't stopping, you might weigh the amount of misery reduced by the spray (assuming that it works for you) against whatever the probability might be that moderate use of triptans might have undesirable effects. Is your O2 setup optimized? Forceful breathing technique; flow rate such that you can use good breathing technique without waiting for the bag to fill; top quality mask (ClusterO2 mask)? Yes, get started now on the D3, and consider busting, and be sure you are doing all you can to manage this. If you haven't seen this post, I'd recommend reading through it: https://clusterbusters.org/forums/forum/6-clusterbuster-files/ Be aware that there is MSG in a lot of prepared foods, not just your Chinese takeout. I've had it in a hamburger, a fancy lobster dish, a Philly cheese steak, and pizza, among other things. (I know because MSG almost instantly gives me pancreatitis, which is the second most painful thing to CH in some big studies (still far behind CH in painfulness).) Check labels. You can't do much about it when you're eating from a restaurant, but maybe you might check back on days when your attacks are more severe to think about what you ate.
    2 points
  5. Greetings cluster warrior . My triggers are almost exactly the same. I can say that after being chronic 7-10 daily that busting and d3 and this group literally saved my life and Gave me My life back. Welcome friend. I’m happy we all have each other.
    2 points
  6. Greetings fellow traveler. Sounds like you have a good plan. D3 is readily accessible and has a low risk vs benefit profile. Busting is a bit more involved but truly worth learning about as an option.
    2 points
  7. Short term steriods work to stop the attacks.
    2 points
  8. usually in reference to usage of triptans........... ..short answer is experience......we all react differently ...longer is: one of the POTENTIAL side effects of triptan usage is that usage (usually OVER usage) MAY cause REBOUND, an increase in number of headaches or, more reported, decrease in time between h/a's (for that matter, any significant changes in your h/as). We're all different so my experience may be insignificant compared to yours. You can reduce the chance this will happen by limiting the amount/frequency you use (tab, nasal or injection). Oxygen, D3 may result in dusty scripts of same....but you keep a little around 'just in case"....
    2 points
  9. Jon019 doctor tomorrow, will ask for prescrition Thank you!
    1 point
  10. I wouldn’t write off topamax immediately without trying it, though. I take 200/mg a day with zero side effects.
    1 point
  11. Your triptan decisions are completely sensible. I just wanted to be sure you saw the other side. Great that you have such a good O2 setup! Only advice, which you might already be using, is to be sure you get as much air out of your lungs as you can before your first inhale and after subsequent exhales. Hyperventilation as Batch recommends, or at least a good forceful "crunch." I don't think the D3 regimen should be an "if." Even if it doesn't help you right now, most people find that it's generally good for them, and it will help you with the next cycle. Two years is far away, though (if your pattern continues), so I can see why you might want to start it later. Just don't completely let it slide, would be my advice.
    1 point
  12. Welcome to the community Bust, sorry you had the need to join us!! Awesome first post! Dallas Denny
    1 point
  13. Something to look into: https://clinicaltrials.gov/ct2/show/NCT02981173?cond=Cluster+Headache&cntry=US&draw=2&rank=6
    1 point
  14. Another thing that may help when you are out and do not have your O2 is energy drinks like 5hr energy. I have also user Monster and Rockstar type energy drinks. I would see if your oxygen company can get you a smaller E size tank to keep with you in your car. Sounds like your on the ball with everything your have done so far. I would maybe add a journal to logg all your attacks, what you did to abort them and how long and painful they were? You can them look back to see what has helped to end the pain a little better then some other things.
    1 point
  15. Your 'share' will help others. Many will read it and relate. Now that you are a member, the closed boards are available. That is where the busting info and posts will normally appear. We keep those boards for members only. When discussing busting, post that question or thread on Theory & Implementation or Share Your Busting Stories. You will get more replies there. Being closed keeps the Bots from accessing that info. The D3 Regimen has helped many either get pain free or at least it slows ramp-up time and lowers the max intensity. It really does help a lot of people and is just taking vitamins to fight inflammation. It is always worth doing! And I will say Congrats for avoiding the Trex. I am lucky in that I cannot take it, so I never had to deal with coming off of it! It can be really rough to ditch when you are now having more hits and worse hits from taking it. For some it does work very well. For others it works, but which 9 hits do you kill for the month? That is a tough question. Likely you have read a bit on the 'morphing' of CH at one time or another now. It is disconcerting and a big worry for most when it does morph and change on you. Rather like 'Wait, what?, what happened here? But it is also common. Which can suck. Welcome aboard and thanks for a great intro! Knowing your triggers is very important and gives you a bit of control. ATB!
    1 point
  16. BustOrNothing, Welcome to the family. Your intro was awesome (well as awesome as anything about CH can be anyway). Yea, I don't think anyone gets us accept another CH'er. Well there are a few here and there. CHFather supports his daughter with CH and has been around here helping others for quite a few years. He's a wealth of information on CH (and a really great person as well). Feel free to poke around and ask any questions on busting. The folder Theory and Implementation has lots of info on busting. As well as the ClusterBuster Files folder. Cheers! J
    1 point
  17. Thanks! No, I do not have that. I started D3 regimen, took third dose just now. Hoping it is the ticket. Thank you for all of your input!
    1 point
  18. "My doctor did prescribe me vials of Imitrex but I had a hard time injecting myself with needles. I see there are a couple of companies that now offer 4mg and 3mg triptan auto-injectors but my neuro said they aren't available in my area or through my insurance. I will look into splitting the shots. " That's actually a WAH-HOO moment as most docs are unaware of the existence of vials...and sometimes they are hard to source....BUT it gives you SO MUCH more control over dosage...the smaller amount of Imi used the lesser chance of side effects and rebounds. Also cheaper in the long run as more doses available per script ...the ONLY negative being the actual injection. Get the smallest insulin needles available and you will barely (if at all) feel the injection. Used to have to do B12 injections...huge needles and deep in muscle....once I got past the initial and daunting task it became a breeze...insulin needles thin and short...you will be joyful at the results.... best jonathan
    1 point
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