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  1. Today
  2. PB90278

    Possibly CH?

    Hey everyone, I'm not asking for a diagnosis, just wondering if anyone else has any input here. For the last 5 years I have been hit with very bad headaches always starting around Thanksgiving (november) and lasting 4 to 8 weeks. Always right side near temple, pain behind eye,, and come on after i go to sleep and wake me up (sometime between 11pm and 1 am), very strong pulsating sharp pain. They generally last between 1 to 3 hours. Eye does not get puffy but sometimes bloodshot. Almost always no nasal symptoms, a few times runny nose. Generally I bear through the pain with a few ibuprofen and a few acetaminophen and gripping my eye socket. I have pretty severe anxiety so no caffeine for me.. I'm just wondering.. ive been reading up on CH for a few years now and it seems like I may be experiencing them but only in some ways and maybe not as severe as I've read about, although they are by far the most painful thing I've felt. I have had 1 migraine in my life, I was 16 and remember the pain being on the right side like these headaches but with that one I had a very strong aura. With these other headaches I've never had an aura. My twin brother had migraines a lot when he was younger but seemed to grow out of them. So I've been feeling some tightness and aches in the same spot that last week or so, early for me. I bought some mushrooms to see if they work for me on these. I was curious whether they just help break a cycle? Do you take them a few days or weeks before you expect the headaches to start? Can you take them to abort an attack that has already started? Its so hard to get through those weeks of pain and my anxiety level on top of that makes me afraid of what I might do if I have a really bad one. I haven't seen a doctor about them, I haven't had health insurance in 7 years. I have a decent paying job with a lot of experience in a niche industry but my job does not offer insurance packages and I have very little collegeeducation. Basically, I feel like I'm stuck at my current job and am terrified of the costs of Healthcare. Again I'm not looking for internet diagnoses or a treatment plan. I'm just wondering if anyone has experienced anything similar. And also if anyone has any advice on seeing a doctor about this with no insurance, that would be awesome too. I'm male, 32 years old and live in the US. Thanks everybody =/
  3. Yesterday
  4. How do I pay for a spot at the 2020 virtual conference? I registered back when you were asking about preferences... but I've never paid (I think?). When I try to re-register or find a payment option, it says that I'm already registered. Thanks.
  5. Last week
  6. xxx

    Paroxysmal Hemicrania -> Day 4

    Hey Siegfried, A vitamin D3 level of 85 ng/mL only helps a little over 50% of CHers prevent their CH. The rest need higher 25(OH)D3 serum concentrations up to 180 ng/mL as illustrated in the normal distribution chart of 25(OH)D3 labs reported by 257 CHers who reported a favorable response to vitamin D3 in the online survey. Granted, this data is from cluster headache sufferers not people diagnosed with hemicrania continua (HC). That said, there is ample evidence that HC shares most of the same pathophysiology as CH which means it should respond to the anti-inflammatory regimen with therapeutic doses of vitamin D3. I've worked with two HC sufferers who responded to the anti-inflammatory regimen. Both took the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 at one 50,000 IU capsule/day for at least two weeks before experiencing a significant and lasting reduction in the severity of their HC. They also took the Methyl Folate + vitamin B complex, which like the Bio-Tech D3-50 has a higher bioequivalence. As you've already noticed, indomethacin is hard on the stomach and GI tract due to bleeds. If you do continue taking it, experienced headache specialists familiar with indomethacin side effects suggest acid-suppression medicine due to this gastrointestinal side effect. Take care and please keep us posted. V/R, Batch
  7. Pebblesthecorgi

    Spravato

    It is an analogue of ketamine. As with everything new and especially off label, there are many variables and there is really know way to know. Getting it and having enough would be pretty significant hurdles. The packaging wants the person to be on an antidepressant as well. I think it would be hard to find a willing prescriber and an insurance company willing to go along
  8. CHfather

    Fall is coming

    igdc, this is a kind of guide to the treatment options we're most familiar with. Maybe you'd want to look it over, just for preparedness' sake: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It doesn't address the new CGRP pharmaceuticals (Emgality, Aimovig, Ubrelvy, and others), which might be worth trying. And people are always mentioning new things that seem to have helped them. Do not underestimate the potential power of busting!!!!! It's discussed at the end of the post I just linked you to, and also under the blue "New Users..." banner at the top of each page.
  9. FunTimes

    Fall is coming

    igdc I keep a log book of every cluster I get with how long and what I did to abort each one. It does help me because things change and what is working today may not work for me next week. I can go back and see what I did to get out of a funk the last time. I am chronic so I do not have any cycles that give me any length of pain free days but I do have cycles that ramp up from time to time. Spring time usually beats me up followed by summer when it is hot out around here.
  10. spiny

    Fall is coming

    Actually yes, it comes right on schedule on the Equinox. It helps me to prepare knowing that too.Kind of 'classic; isn't it? To cover all cycles, I should say the week of the Equinox.That covers them all.
  11. igdc

    Fall is coming

    @spiny, Is it really that exact, to the day? I think my first was September 26th. A migraine (for which I'm also chronic) or jaw pain following a replaced filling, I thought. I traveled for work, did alright with headaches here and there... and by the middle of October, it was full-blown terrible. Do I need to keep a calendar to map patterns for future years? And yes, it does help me to know that I have a good doctor whose treatments seemed to help... but even then, it takes time. And I suppose there's no way to know if it would work again. Ack... scary. Thanks for the replies and wishing you both well.
  12. xBoss

    Fall is coming

    Yep, the fall is my time of year as well. Already been working on it.
  13. spiny

    Fall is coming

    I definitely get the fear quotient. My cycle will begin on Sept. 21st. I make sure that I have my gear all lined up and ready to go. Plenty of O2 on hand! Also, I stay on the D3 Regimen. Are you doing that? It really does help many of us!! I up my D intake to 15,000 as opposed to the normal 10,000/day. In addition, I make sure that I follow a set sleep schedule. Get up the same time daily, no matter what. The better armed that I am, the less stress I have. If you bust, then do that in advance. Put that info on a closed board - Members Only - and you will get a lot of replies from those who rely on that. Then, just breath deep, decide you have done all that you can and move on with life. Good Luck!
  14. igdc

    Fall is coming

    I just realized that fall is coming. Like air-sucked out of my chest bc a new cycle could be on the horizon. That's when my first cycle started (lasting about 4mos, if you don't count the one-offs that followed for a few mos). I have this sudden feeling of dread that this could begin at the end of September again. I have lots of painful ailments, but I don't tend to live in fear of the next one. (e.g., I know that I have other kidney stones w surgery in my future but meh, when it happens, it happens.) Realizing, though, that a new CH cycle could be weeks away just knocked me for a loop. How do you cope with the fear?
  15. CJW

    Spravato

    fast acting nasal spray for suicidal people, just approved FDA, I hear its related to Ketamine, wonder if it would help CH.
  16. Geisha

    They’re back after 5 years

    Hi meme All the best in these times, hope you dose went well and you can get back on track and be pain free again. Big hug, Geish
  17. Siegfried

    Constantly drooping eye

    I also have permanent miosis (pupil that does not come bigger when in the dark) on my right eye. I went to see an eye doctor several years ago because I was afraid I maybe have some tumor or something. What he did was drops of cocaine in the right eye. If everything is normal, the pupil should suddenly become very big.. what it did. So this took away my worries for something more serious. These autonomic symptoms are often weird.. like two days ago, I suddenly felt really unrest and my nose was running as I suddenly go a big cold... the typical symptoms when I am having attacks but absolutely no sign of a headache at all. After an hour or two everything came back to normal.
  18. ThatHurtsMyHead

    They’re back after 5 years

    meme, Sorry they're back, but glad to hear you already have a path to get pain free again. Do you have O2? Cheers on your dose today! PFW, J
  19. MoxieGirl

    They’re back after 5 years

    Hi memememe (nice nick) Here's how I explain the pain to people, might help clarify things with your partner. Have him think back to when he had a muscle cramp in his calf muscle, most people have had at least one in their life. Then, ask him to double that amount of pain, and have him think about how when a muscle cramp starts, it starts out of the blue with no warning. And then, for the 30 seconds or a minute that it lasts, it is all you can think about. It is an all consuming pain, nothing else exists but the muscle cramp. Then, have him double the pain level again. Then, shrink it down to where the pain would fit in his palm, but maintain that same intensity. Now, ask him to imagine that in his eye and lasting for 3 hours. Mox
  20. Rod H

    They’re back after 5 years

    Good luck
  21. Pebblesthecorgi

    They’re back after 5 years

    Good luck
  22. memememe

    They’re back after 5 years

    I don’t have much to add to the board except to say that after five nearly cluster-free blissful years (with a handful of smaller CH incidents here and there), the cycle is back on and last night had worst, most painful CH since 2015. First time that my partner saw me in full throes of pain and have found it hard to explain to him what I’m going through. Dosing has worked for me before and is what seemingly worked to keep me cluster-free for 5 years so I’m going to try again tomorrow and hope I’ll be back on track. Wish me luck.
  23. Earlier
  24. ThatHurtsMyHead

    south florida

    Hi jimmy's, Glad to hear your CH is mild. I don't think wellbutrin helps our CH, but I think quite a few of us take it for one thing or another. Tampa / St Pete here, Cheers, J
  25. jimmys

    south florida

    I'm back. anybody live on the east coast of south florida. Also, I started taking wellbutrin as an aid to help me quit smoking but I found that this cycle has been very mild so far. Wonder if its just a mild cycle or is the wellbutrin helping? Anybody have any experience with this?
  26. signals61

    Nurtec medication?

    Personal experience update: Nurtec was effective for the first 24 hours or so, but didn't make the 48 hour goal. Last night, within the 48 hour window of initial medication, the first visit of the beast came at the usual 1:30 AM time. I think it was not as intense as usual. Pain only, no rhinorrhea, conjunctival injection, or lacrimation, and I spent 10 minutes on the tank before heading back to bed. Normally I'll get three visits during the night, but I'm on the tail end of my cycle right now, so I can't use the reduced attack count as a guide. So maybe it still had some kick left in it? Not sure. Tonight I'm going to wait for the beast before medicating, just to see how fast it actually works. I probably won't update again unless something radical is noticed. I'll keep using it for the next couple weeks till its gone. Bottom line for me is, if insurance doesn't cover this it's a moot point. Sumatriptan is faster , cheaper and much more predictable, oxygen is a good backup. Considering the retail cost, I'm disappointed in my results so far.
  27. signals61

    Nurtec medication?

    All good questions @Pebblesthecorgi What I can tell you right now regarding cost/insurance: My doc and I really didn't consider it at this point. The first script wound up being free with a doctor provided coupon. The pharmacy listed the retail price before the coupon at $1003.99. GoodRx says I can get it as low as $864 (retail without coupon or insurance). A package contains 8 pills, and that's supposed to last 30 days. Maybe for the average migraine sufferer, sure. But for us CH folks, at best, that's 2 weeks (assuming it holds true to the data, 1 pill every 48 hours). If my insurance doesn't cover it, at least partially, I won't be getting a refill. At that price point I can't justify the cost! If it accelerates my metabolism, I'm ok with that for the moment. I don't take verapamil as it did nothing for me and I already take atenolol (beta-blocker) for blood pressure. The beta-blocker increases weight gain, so an increased metabolism might offset that - it might also cause my BP to rise (I'll keep an eye on that). And that could explain the difficulty I had getting to sleep last night. I did ask my doctor about Emgality, the once a month injection. He didn't seem enthusiastic, but said he'd write it if this one didn't work out. (I suspect he had a sales guy in from BioHaven pushing Nurtec, but no one from Eli Lilly has been around to make such offers for Emgality. In any case, Emgality lists on GoodRx for $559 with a coupon. Still only going that route if insurance covers most of it.
  28. Pebblesthecorgi

    Nurtec medication?

    It will be interesting to hear reports of how this is working for folks. First I will be curious how it is covered by insurance since there is no data on clusters. It will also be interesting from a cost effective standpoint if taking daily or a couple times a month is similar to monthly injections. Be aware this drug will stick around later in the presence of calcium channel blockers like verapamil and prednisone may accelerate metabolism. Experience still gathers on the CGRP class of medications for use in clusters. I suspicion the mechanism of action the drug takes will make a difference. If nothing else is helpful and you have access I vote "hell yeah, give it a try".
  29. signals61

    Nurtec medication?

    Early review - Took the Nurtec last night - I was just starting an attack, but it wasn't in full bloom. As you all may know, it's a dissolving pill, so you just put it under the tongue and let it melt. It has a light mint flavor, not unpleasant.Fully dissolves in about a minute. True to the literature, within an hour the pain was gone. So not as fast acting as the triptan injection, but it did seem to be effective and without the heavy chest sensation I get from the triptan. The only side effect I may have had - I had a hard time falling asleep. Hard to tell if that's just the stress of the day or the meds. (Actually one of the the things I like about triptans, they make it easy to fall back asleep.) For me, the beast predictably comes two or three times a night, in my sleep. First attack is usually like clockwork at 1:30 AM. Random attacks happen during the day or late evening. So the big test was, would I make it through the night without the beast knocking me out of bed? Mostly, yes. I woke once, but not from pain. I did have a mild attack when I woke on schedule in the morning. I settled that one with 5 minutes on the O2 tank. Again, according to literature, if you do get an attack, the intensity should be reduced, so this is also consistent. So - next thing to look at - according to the literature, I should get through 48 hours with no attacks. We'll see after tonight. Stay tuned.
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