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  1. 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
  2. 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
  3. Hi All, I, for the first time am currently following though with the D3 approach. It's been almost a week and a half of stagnently starting it as I did not have immediate access to all the vitamins mentioned. However I do now. I have my O2 ready on standby. Whilst I always hate to count my chickens before they hatch, there has been improment. ie. From 9 nocturnal attacks, I'm gone down to 2 per night. I have been stealing much more sleep in the last 3 nights, which feels great. I know It does take roughly 3 weeks to kick in correctly as I am still loading as per th
    4 points
  4. 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
  5. @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
  6. 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
    2 points
  8. 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
  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
    2 points
  10. Happy New Year's to you Luis!! Keep that winning streak going!
    2 points
  11. 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
  12. Oh, I definitely agree with that statement Kat! A headache specialist is most always better.
    2 points
  13. 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
  14. Yes, just as THC is stored in fat cells. If you're a fat stoner like me, losing weight feels awfully good
    2 points
  15. 2 points
  16. Mastermerls, Sorry, but I got a chuckle reading that you cover your eyes while working on the PC and watching TV. ha ha. I'm sure you meant something else. I worked with some programmers years ago, that I swear they did the same thing while programming. When their code worked, there was no way of figuring out why... ha ha.. I'm glad you're getting some pain free time, but I'd be very skeptical of any type of glasses stopping our CH. From research our condition is related to an inflammation response. Hence the reason O2, Prednisone etc do work. Brain scans have shown the H
    2 points
  17. 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
  18. My only comments on the great advice above are (1) I'm not sure there's great evidence that taurine is a significant factor in the effectiveness of energy drinks/energy shots. There might be such evidence, and I might have missed it. For some people at least, plain strong coffee or energy drinks without taurine seem to work fine. I mention this because there can come a point when you get really sick of the energy beverages. (2) Triptans are very effective against CH, but not in pill form (takes too long to get into your system). The nasal spray works for many, and injectable forms work for vi
    1 point
  19. 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
  20. 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
  21. 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
  22. Hey Krios, Falling out of CH remission while on the vitamin D3 regimen can happen to any of us. It happened to me in 2015 due to a pollen allergy and again in 2018 due to a mold spore allergy. We've learned a lot since then. The winning course of action to get back CH pain free is to start loading vitamin D3 at 50,000 IU/day, ditch the Benadryl (Diphenhydramine HCL) and start taking 3 grams/day Quercetin. Quercetin is an excellent antihistamine and unlike Diphenhydramine, there's no drowsiness or time limit on dosing. Bumping the Turmeric (Curcumin) dose to 3 grams/day also helps
    1 point
  23. @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
  24. @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
  25. 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
  26. Thanks everyone for the responses. Feels good to know I’m not alone out there. @spinythe hunt for a good neuro is really stressful. It almost seems like I need a headache specialist rather than a neuro. Neurologists seem so set on migraines and ready to push the latest and greatest migraine med on me. Nurtec, emgality etc. when I tell them it didn’t work for me, they are still someone convinced it’s migraines. Ughhhhg
    1 point
  27. 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
  28. ...it was the rare cycle when i DID have night/sleep hits...enough of an anomaly that in hindsight there must have been something else going on...like allergies, illness, inflammation.... ...a doc who would say night hits are a determinative symptom in ch diagnosis would also say "women don't get ch".... ...find a new doc.....
    1 point
  29. 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
  30. I look forward to your followup Seff! Many thanks for posting this! ATB!
    1 point
  31. Just to update this post: My serum 25(OH)D came back at 144ng/mL when I did this test back in 2018. Which suggests to me at that time, my D3 was in a high enough range before I started loading for me to be pain free but I wasn't. I think what probably helped at the time in addition to my high D3 levels were the continued use of Benadryl, Probiotics and Tumeric (Curcumin) - 1100 mg due to persistent allergies. ==Current Situation== Throughout the year, I lapsed with the regimen, general good health and nutrition. And about 2-3 weeks ago, like clockwork my CH cycle started.
    1 point
  32. 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
  33. Happy Anniversary xBoss! And Happy Solstice to all! Feed the Faeries!
    1 point
  34. Happy Anniversary @xBoss!
    1 point
  35. Mark, you or your PCP can order the test for D3, calcium, and PTH. You can begin the regimen and get tested in a week or two if that is the way the chips fall. Getting on it quickly is one objective. See the first picture that XXX, batch, put up of six vitamins? Buy those and take as he directs. That is the base of the Regimen. That should simplify it enough to begin by yourself I hope. Those vitamins are available most everywhere. The K2 can be a problem to locate, but is easily ordered from Amazon. If you cannot find the particular D3 Brand that is now recommended, use another brand of
    1 point
  36. Sorry to hear that Vitamin D isn’t solving the problem. I’m chronic and did everything you did with the same response. In fact the high doses of Vitamin D seem to make it worse at times. I’m currently busting and have done it twice with limited response. I expect that it will take 4-5 more busts to get some results. Chronics usually need more busts so I’m hoping this will help.
    1 point
  37. She and I chatted several times, and I know several people here will miss her. She'd had a touch journey in life, and I hope she's found peace. Thinking of you BoF. xx Mox
    1 point
  38. 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
  39. I pace a shit ton does that count. Lol. I log a lot of steps...
    1 point
  40. @manishkpratap wow a little protective of your thread. Things tend to go in what ever direction they may here. And I find her experience less hokey than your “cure”. And the “rest of us folks” think your “cure” is just as if not more weird than hers. Judgmental rude people usually don’t do well on public forms. But thanks for letting us see your true colors.
    1 point
  41. 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
  42. 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
  43. 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
  44. O2 has been accepted mainstream medical practice for 30 years. It is unconscionable that people still have to fight to get it. Maybe it has to do with the fact that God holds the patent on oxygen, not Sandoz.
    1 point
  45. O2 is by the book, in Canada, in the US, in Europe.... O2 is medically proven. The fact that your doctor won't bother to learn that while you are suffering makes her, to my mind, not really a nice person at all.
    1 point
  46. I'm too old to remember. :D :D
    1 point
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