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  1. Spiny, J and Bejeeber no words left for your kindness in this difficult time,,,,,, at present i figured out that i should only continue Paxil (Paroxetine CR 12.5 mg) without mixing it with other tabs, it seems it is working. Sure, going to update you in coming days! Love, Respect and Happiness to you people!
    4 points
  2. It was about a year and a half ago that I met the ‘kid’ on the video during a patient day in the neurological centre. Although his young age I was surprised how much he already knows about CH, but also that he was frank and open about the things science does not know yet. He said that O2 really helps, but they just do not know why?, is it because of the cold airflow up the nose, or that there is somewhere in our system a ‘switch’ that signals that enough O2 is in our blood and that the blood vessels can be contracted again. Anyway, they would like to start conducting scientific studies i
    4 points
  3. Happy New Years y’all! I hope you guys are having pain free days. I am happy to report that for the second time in my life, I’ve managed to keep the beast somewhat controlled. may this year come with tons and tons of pain free days for everybody. Also, may this year be the year that I get to go to the conference!! love all of you beast fighters out there.
    4 points
  4. Welcome! Cluster headaches seem to be more rare in young women, so I'm not glad that you're here exactly but I'm glad we aren't alone! I had my first at 20 and am 36 now. I have not tried as many of the medications you mention - my last doctor prescribed me sumatriptan in tablet form which didn't do anything for me except propel me into a medication overuse cluster episode. I will say that 5 hr energy is a great abortive for me, and that I have had a lot of success with a procedure called Sphenocath, which is an SPG nerve block where they put a lidocaine solution on a nerve cluster in yo
    3 points
  5. ......been doing some form of this dance for near 40 yrs now, and it continues to break my fricken heart that the absolutely true above has changed so little....especially so for O2 ...the best, highest success rate, safest, cheapest abortive.... ...it is to sigh.... and one of the many reasons for ch.com, cb.org, et al. i am forever grateful for the clusterheads and their supporters who DO understand.... and reach out to others in the "family".....if we aren't our own best advocates sometimes it seems we got nothing.....
    3 points
  6. Hi A-Z, I remember reading way back that benzo withdrawals can cause severe suicidal depression, not sure if the source was scientifically legit or what though. Plus it sounds like you're pretty much over the benzo withdrawal side effects by now. Modern day cannabis, bred to be super strong, gives me anxiety and some paranoia, so I don't imbibe. Not sure if it's just a change in my biochemistry or what, but the old, much milder, 70's style cheap "commercial" weed in California never triggered any of that for me. Quite the opposite, in fact, it was relaxing and mellowing. The followi
    3 points
  7. A-Z, Glad you're asking for help. It can be challenging, I know. I'd highly recommend seeing your doctor. There are several antidepressants that even at low doses can really help your symptoms. I took a generic version of zoloft for close to a year recently. I had some situational challenges going on with a lawsuit against a contractor that had damaged my home. I'm not familiar with most of the drugs listed in your first post. I'd wonder if something you've taken recently, Zomig etc, might have created a serotonin imbalance? Please, do go see your doctor. (I'm in a bit of withdra
    3 points
  8. Hi guys, After about 5 months free, I think I can confirm that the D3 regimem really works. In the past 20 years, I tried almost every medications possible without any great success. The best scenario was about 15 attacks/month. Thanks to this site and especially to Batch for the great help. I am now completely free. From my part, the D3 regimem will reduce the frequency and severity of the attacks. Combined with Verrapamil, it completely stoped my CH. Even my doctor his amaze of how well I am. Thanks guys for your support and help for giving me my life back.
    3 points
  9. Welcome Dave, This site is full of info that may help you out with figuring this out. A little more info on your headaches, Are they the same time of day every day? Do they run in a cycle, Spring, Fall, of only on a certain month and only x number of weeks? Does alcohol bring them on? things like that will help figure out if they are for sure clusters or not. Like Jon said above Oxygen is something you will want to get as soon as you can if you do have clusters. You will want it in a tank not a concentrator machine and you will want a high flow regulator and a cluster mask to get the full ben
    3 points
  10. @Krios239 hey I’m sorry to hear about what you’re going through. It’s almost like that pain free time gives the ch a chance to ramp up. What is your O2 flow? Maybe try a higher regulator since this cycle seems to be pretty heavy. I think you can order RC seeds online. They have the same affect as MM when it comes to treating ch. they don’t ship to where I live, but depending where you are I would look into the RC seeds. Yeah get on that D3 as soon as you can. I think it’s really important to stay on it permanently even when you’re not in cycle. Are you on any other preventative medicatio
    3 points
  11. You are so right about it having a habit of changing.. I got my first CH when I was 23 (I am now 62), and it has changed and morphed over the years. I just started the vitamin regimen in 2016, had no cycle at all in 2017-2018, had a light cycle of "shadows" in 2019, I am now at "what I hope" is the end of a cycle that started early December 2020... Even though this has felt like a full cycle in frequency, it is much lower on the pain scale, and they are not lasting as long. I really hoped when I went the 2 years PF, I was going to be one of the lucky ones that would never have one ag
    2 points
  12. I don't have anything to say about Nurtec, except to mention that just yesterday a person posted that s/he was recently prescribed Nurtec: https://clusterbusters.org/forums/topic/7465-newbie-to-group-advice/?tab=comments#comment-71856 I looked at goodrx.com, where there are often free coupons for lower prices for things you can get at standard pharmacies, but the lowest price there was $886.62. I did want to mention that a possible antidote to being knocked on one's ass by Imitrex (and to most of the other side effects) is to use less of it each time. Most people only need about 2mg to
    2 points
  13. Welcome to the community @ERICA! Looks like you've had some good suggestions but I'll reiterate Ch father's advice on Oxygen and the vitamin D3 regimen! Dallas Denny
    2 points
  14. ...good morning Erica...welcome! ...yeah, thanks Ma for sure...diagnosing CH in an adult is a crap shoot..it would seem to be even moreso for a child.... ....you don't mention OXYGEN.....considered the best abortive and NO side effects, especially heart wise. any experience there? wouldn't need the other meds.... ...careful with the Excedrin....some folks find it helps with shadows (naproxen does for me) but is useless for a regular hit, nasty potential stomach side effects and additive to any blood thinners you may be on. methinks the caffeine is the key ..... best jo
    2 points
  15. Welcome, Erica. As it is said here, glad you are here but sorry you have to be. First, foremost, and above all else -- OXYGEN is what you want for stopping attacks. It's the life-changer. You will have a lot less need for other abortive meds (such as triptans or Nurtec) when you use O2. Then there's the vitamin D3 regimen -- the best, safest preventive. An energy shot (such as 5-Hour Energy) or drink (such as Red Bull) at the first sign of an attack can reduce its severity or even sometimes abort the attack. There are reasons why the shots are preferred (more caffeine, easie
    2 points
  16. Is he breaking open the injectors to get multiple shots from each? That still won't cover 5-6 attacks per day, but properly set up oxygen will deal with many/most/all of those, so the Trex is just needed for breakthrough attacks. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Or vials and syringes, as Pebbles' mentioned. Verapamil is a good example of what I was saying . . . One form (immediate release) works better than another (extended release), but most doctors don't know that. And the typical dosage required to prevent attacks is often far higher than
    2 points
  17. In principle I agree with @CHfather. If one fails to respond to injectable imitrex then the diagnosis should be scrutinized. I have a similar belief to properly administered oxygen. If it doesn't work I would be skeptical of a CH diagnosis. There is general agreement oral forms of triptans are useless for aborting CH. Subcutaneous triptans should be highly effective in a person with classic cluster headaches. Many find reduced doses of 2-3 mg highly effective in aborting an attack. Using multi dose vials or splitting autoinjector doses helps reduce side effects and increases
    2 points
  18. I can speak from experience that I've aborted a headache before by jumping into a very cold sea. You know that shock to the body you get when you enter cold water, the feeling of your breath being taken away? It seems like that can be enough to knock out any headaches for me, CH, migraine or otherwise. Maybe there's a vasoconstrictor effect triggered by that, I'm not sure. I know I've read articles in the past about chronic migraine sufferers who've managed to significantly cut down their headache frequency by doing cold water swimming every morning. So, it doesn't necessarily surprise me that
    2 points
  19. The company is "...doing a lot of preclinical work to complete a package for an IND filing for sometime in the fall, for the full-blown phase two clinical trials for BOL-148.” They have acquired a patent to make BOL without having to use LSD to make it. That's a big deal. https://www.forbes.com/sites/amandasiebert/2021/01/18/betterlife-pharma-is-developing-second-generation-psychedelics-drugs-that-leave-out-the-trip/?sh=1405582f648f&fbclid=IwAR1qjwmeOl-LLa9KQyetBMeRSQpBtwKJmmpz0xxX27kFM6-1cRHmE-T5e0o
    2 points
  20. I have only had a few panic attacks in my life and they ere not 'bad' ones. My daughter does suffer from them though and she won't touch pot. So, not sure that matters much, but it is the only connection I personally have to panic attacks. I would definitely try to talk to the doctor about something for depression. It is debilitating at times!! I have taken Wellbutrin and done well with that one, but likely THMH has better advice on the Zoloft. Please, don't beat yourself up. Stuff happens and we do what we can figure out to do to get through it. I don't know of any benefit for CH f
    2 points
  21. This year's Headache on the Hill event that is put on by AHDA (Alliance for Headache Disorders Advocacy) is being held in March (22-23) and will be virtual like everything else these days. The deadline for registering is coming up this Friday. There is a $50.00 registration fee this year due to the high costs of the company organizing the complicated process of scheduling hundreds of meetings with Senate and House offices. Anyone from the cluster community will have their registration fees covered by Clusterbusters upon request. If you live in any of these states, we really need you. You
    2 points
  22. Happy New Year's to you Luis!! Keep that winning streak going!
    2 points
  23. Kat I'd suggest it doesn't almost seem like you need a headache specialist type neuro as opposed to the garden variety type, more like you definitely do, based on your experience and that of zillions of other CHers.
    2 points
  24. Oh, I definitely agree with that statement Kat! A headache specialist is most always better.
    2 points
  25. Hi Batch, Thanks, I'll check and PM you. =General Update for The Board and Anyone Else= I have been able to switch rooms with my parents over the past two days while taking the supplements mentioned above. First Day = 18+ hours pain free Second + Third Day = 26+ hours pain free 1 Headache per day vs 2-4 as I was experiencing before. Will make some changes in my environment and continue to post my progress as this might be helpful to another person reading.
    2 points
  26. In the total crap hole that was 2020, I didn't have ANY cluster episodes. On Thanksgiving, I felt some onset/shadow and aborted with a 5 hr energy. Then at 12:15am on January 1st, I was woken up (yes, because I was already in bed ) by a full ch attack and am now up to at least 12 for this year. I definitely slacked on my vitamin regimen sooo I've got that going again. Plus a dr appointment scheduled where I demand O2. I did the sphenocath SPG block procedure in the summer of 2019 and I think that is a lot of why I had a good run so I made a phone call about doing that again and am waitin
    1 point
  27. I have six cats and magic on my side! Keep up the good fight my friends!
    1 point
  28. This is helpful! Thanks for the links. You have my word that I will be reaching out to Justin Kirkland this week and inquiring about his work with BOL. I have some ideas for tweaking the molecule but they may not be commercially viable- that is always the "catch," when it comes to denovo therapeutic development. Cool ideas are often unprofitable! I apologize for not checking in more often. Lately my days have involved research on a rare neurodegenerative disorder called Pantothenate Kinase-associated Neurodegeneration. My teammates and I are working on resurrecting an abandoned program th
    1 point
  29. Sorry to see you back, but at least you are among those who know what you are going through (Relatively speaking as we each have our own tailor made beasts) I have decided pets, particularly cats should be part of a ch'ers coping kit. My devon is one of the only things during a hellish hit that can bring me some peace. Hopefully, all gets back on track for you fast.
    1 point
  30. Hey Drewbie, All, The basic regimen posted on vitaminDwiki is still valid for CH and MH. I was in the process of updating it with results from the online survey when the COVID-19 pandemic hit the US in early February. At that point I had two changes to supplements in the posted version. The first is we've found the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3 to be faster acting with a higher bioequivalence in elevating 25(OH)D3 serum concentrations than the same dose of the oil-based liquid softgel vitamin D3 formulations. I began suggesting this switch in 2019 here on t
    1 point
  31. Thanks J for replying, well i am replying late as i saw no one was is interested in my post,,, so checked it late. Yes! i too had the feeling of being nervous during and after smoking cannabis but after few hours later i am fine. However, this time i took a bit lot and i suspect only cannabis, a year go first time when i smoked a little panic attack came after a week but it was manageable and it went away after some medication. It seems my body takes cannabis differently than majority. My pothead friends say same as you said, they had anxiety and low/high mood but have no panic attacks. I
    1 point
  32. A few people were interested in my comments on sleep and psilocybin. I first began looking at it because it linked in with PTSD/REM-behavior disorder and the hypothalmus, both of which are elements of the rare sleep disorders my son and I experience, and of course for many CH patients their attacks seem to have a relationship with REM sleep, let alone also originating in the same area of the brain. For your interest, here's a brief commentary from a neurology researcher on cluster and sleep
    1 point
  33. Re: Ditch the Quercetin – A little history When it was clear that a high percentage of CHers who were either slow responders or not responding to the anti-inflammatory regimen treatment protocol in early 2011, I began looking for reasons why. The common thread that immerged from all the feedback from CHers reporting this problem and searches of open source medical literature was a combination of allergic reactions and systemic inflammation. Both conditions involve the immune system. As systemic inflammation is common to nearly every medical condition and disease from colds to can
    1 point
  34. A-Z, I've tried cannabis a few times. Every time, I've had an almost panic reaction. I think my body is wired differently than most other peoples. It didn't make me feel good at all, just wayyyyy nervous and all I could think about was never doing it again. It seems odd that the feeling occurred after several weeks for you. I'm no doctor, but to me it would seem like it's not related to the cannabis. Cheers, J
    1 point
  35. @Krios239 heyyy I’m a bartender as well! I wait to take my Benadryl until I get home. A lethargic bartender is absolutely the worst hahaha. Sorry you need to work the bar in pain. I sooo understand your struggle ;/ keep us posted kat
    1 point
  36. Inexpensive 25lpm O2 regulator: On Amazon
    1 point
  37. @Krios239 also ask your neuro to make sure it is immediate release verapamil not extended. I think that would work better for you. At least until you could find some MM kat
    1 point
  38. Good suggestions from kat'. When you mention the "new D3 regimen," does that include Benadryl? If not, I'd include it. (I think the recommended dose is 25mg four times a day.) For some people, when an O2 tank gets low, it seems to lose effectiveness. "Low" can be 1/4 left, or maybe even more. Higher flow rate seems to help with that (new tank is of course better). Is your pred dose pack a Medrol Dose Pack (the most common kind)? Often the pred levels can be too low in that to really be helpful. Relpax is a pill, right? If it is, I'm surprised that it helps you (but glad it
    1 point
  39. I will go from the worst attacks or 'wakers' at night to sleeping nights and 6 am kick me in the face and through the day ones, usually in cycles of them seeming to rotate forward through the clock. The one constant for ch is it is not consistent. I truly wish there were more headache clinics out there for everyone, once I got sent there, I was diagnosed and immediately felt 'validated' by a team of neuros whose specialty was headache disorders.
    1 point
  40. When I was diagnosed, my CHs occured at specific times throughout the day after I woke up on mornings, like clockwork. Over the past 4 years I maybe only had 1-2 nocturnal CH attacks. However, right now for the first time during this cycle I'm in, I'm experiencing night time headaches. It changes up on you, unfortunately.
    1 point
  41. I look forward to your followup Seff! Many thanks for posting this! ATB!
    1 point
  42. You should be able to access Ketamine treatment, has your doctor tried this? Have you discussed it with him? It's approved treatment for exactly what you describe and highly effective for 50%+ patients. It's a low dose supervised IV drip that gives relief lasting weeks and sometimes months. This is the treatment they took out of clinical trials to give it special approval because it was so effective it was unethical to have a placebo group that wouldn't be able to access it. https://www.nimh.nih.gov/about/director/messages/2019/new-hope-for-treatment-resistant-depression-guessing-
    1 point
  43. Wow this is sad to read. I read through her busting log many times. She was one of the many people on this forum who’s story gave me the courage to bust. Thank you for sharing.
    1 point
  44. I'm curious how one defines "great success". A years worth of Emgality and D3 program but currently in a difficult cycle. I think about what success means to a cluster head. Personally I define it to be completely headache free. So when I get 18 month remission and then have 3-6 months of hell does that mean the busting\D3\CGRP\whatever bought you the remission or was the remission coincidental with the cycle itself? Sometimes when sucking O2 for the third time a night I wonder if all our solution seeking is just mental masturbation and the cycles will come by whatever path th
    1 point
  45. My doctor also suggested I try Nurtec at my annual last week. I picked up the script today and I've been doing as much research as I can get my hands on. Like @kat_92, I'm suspicious when it targets migraines but doesn't specifically mention clusters. I reviewed their web site and couldn't find a single mention of cluster treatment. Also, literature says it can take anywhere from 1-2 hours for pain relief, so if I'm using it as an abortive, I don't know that that helps much. That said, it says it prevents them for 48 hours after. That could be good. They seem real proud that it reduces t
    1 point
  46. For all you Amazon shoppers out there...and I know you are out there.... They have a program where you can designate s small percentage of your purchase to be sent to your favorite non-profit organization. Clusterbusters is registered and would appreciate it if you would take a percentage of Amazon's millions billions and have them donate to our cause. A direct link to start shopping and donating: http://smile.amazon.com/ch/43-2081926 Thanks very much, Bob Wold
    1 point
  47. I pace a shit ton does that count. Lol. I log a lot of steps...
    1 point
  48. Some links I found. 35 year old woman with coronary artery disease has a heart attack after first dose of SQ sumatriptan. http://www.ncbi.nlm.nih.gov/pubmed/7783891 56-year-old female patient with migraine who experienced a myocardial infarction shortly after using sumatriptan, despite having had a normal cardiovascular evaluation. http://www.ncbi.nlm.nih.gov/pubmed/8682677 Risk of severe cardiovascular adverse events after the use of a triptan is estimated at 1:100,000 treated attacks http://www.ncbi.nlm.nih.gov/pubmed/20977405 42-year-old man with episodic cluster headache
    1 point
  49. After hearing from several of you suggesting making this thread a "sticky", it is done. I feel that it is that important. BB
    1 point
  50. Sumatriptan caused me to have 51 attacks in 7 days. I have stopped taking it and do not plan on taking it again. It seemed to make the pain worse too. IÂ’m still having a couple a week. Somewhat keeping them at bay with verapamil. Physicians will continue to prescribe it because they are making money on it, kickbacks from pharmaceutical companies and dinners at nice restaurants. They do not care about the patience and it is all about the $$. This goes for profit, not for profit and county health care providers. All of them make a lot of money! This is why my neurologist will not prescri
    1 point
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