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Everything posted by CHTraveler

  1. I agree about the tape bit. I luckily just found a nonrebreather mask with the holes on one side already sealed and a gasket on the other--has been more effective than the the both-side gasket one I was using before. Nonrebreather masks are only $3.00 here, and I'm renting an enormous H tank for $20 per month, $40 O2 refills, delivered by a nice guy to my door. At that price, no fussing with insurance!
  2. Nor can I, the band feels terrible. I luckily can tolerate simply holding the mask to my face, and I agree that inhaling through the mouth is way better with the bag--I inhale through the mouth and out the nose holding the nonrebreather mask on my face at 14 lpm, usually works within 10 minutes or so. I set an alarm to not go past 15 minutes, and only on rare occasion has it not worked, thankfully.
  3. I find putting a frozen bag of peas on my neck while using the O2 helps. Sometimes I'll put a second bag of peas on my head. I'm sure the whole scene looks rather chic to the untrained observer
  4. Greetings from down South, sorry to hear about the situation with your husband. I fully agree with others that the D3 regimen is helpful, also melatonin often helps reduce nighttime attacks. I also agree that it's better to hit the oxygen earlier rather than later in the attack. Regarding the anxiety and driving everyone crazy and not wanting to work, I've been through that too. All I can say is that the sooner he can move to a place of acceptance, the better. There is currently no "cure," and hating the cycle and resisting the attacks makes it all worse. For me, when a cycle starts, I do go through my initial phase of denial ("Oh, maybe it's not a cycle, maybe just a random attack, it can happen..." "Oh it's just the air pressure, not an active cycle"), but once it becomes clear that it is indeed an active episode, I really try to accept it and tell myself I'll get through it. When an attack starts, as calmly as possible, I stop what I'm doing and go to the oxygen, assuming I'm home. While I'm on the oxygen, I try as hard as possible to clear my mind, almost as if I'm trying to meditate--not panicking is key. If I go out, I'm either prepared to abort whatever I'm doing and go immediately back home in a taxi, or I do take meds to lessen the severity if an attack does come. Although it's not without side effects, dihydroergotamine seems to work reasonably well for me in that respect, but I try not to use it more than 2-3 days per week. The other one I use isn't available in the US, unfortunately. I'm not a triptan fan, personally, but many people have good luck with them. I also do the MM busting protocol, which usually works to break the cycle, although not 100% of the time. He'll have to experiment and see what works for him, but acceptance and calm perseverance are key. Good luck!
  5. I have to agree with Pebbles in expressing concern about those meds. If they're not working, there could be less toxic alternatives. I'm somewhat hypocritical here in that I've had to take a bunch of meds this cycle, but that's only because my natural remedies didn't do the trick as they have in the past. I agree that O2 is the best abortive measure. The best abortive for me when I'm not near oxygen is called dipyrone, which is not sold in many countries because of a rare but serious potential side effect (where I live it's OTC). Ergotamine can be somewhat of a nighttime preventative. PLEASE let us know how you get on with Gammacore--good luck!
  6. Hi, thanks for the post. I start with 80-100 mg (depending on cycle severity) for 5 days and then taper 5 mg/day until off. Your taper seems a bit abrupt, but I'm not a doctor. I'd really ask a doctor before going back on--did it work on the cycle? You're right, the side effects are grim. I used it for this cycle because MM didn't work this time (had worked the past two times) and I was desperate. It also didn't work to break the cycle, unfortunately--it made the most intense part more tolerable by reducing the frequency and severity somewhat, but the side effects are really tough. I truly hope I don't ever have to resort to that stuff again to get through a cycle.
  7. Yes, sometimes during severe attacks, especially those infamous night ones.
  8. Please let us know about your results--good luck!!
  9. Aw, too bad I didn't see this--I'm looking into gammacore now, but the price is a put-off, especially since I live in South America and incomes are not like in the US. I'm sorry for me, but glad for the person who will get it, hope it works! Could you suggest to the recipient that he/she post about the results? I'm thinking about going to the US to get one, but that's not a cheap trip--I'd really love to read more firsthand testimonials. I'm truly sorry you're CCH--that's gotta be tough. My current cycle is dragging on longer than usual, and previous successful busting efforts (MM, prednisone) didn't work this time. It'll end eventually though--I truly feel for you all who don't have that break. It was really generous of you to offer your device like that--much respect to you, Brian
  10. Hi John, thanks for your post. You might just be lucky in that your most severe attacks aren't quite as severe as others'--if so, that's fantastic!! I've also seen those videos, and I can say that my attacks can be truly horrifying, but I don't allow myself to scream out in pain, even though that impulse is there; in fact, paradoxically, it's perhaps during an attack that I'm very focused on being calm and centered in order to make it through--panicking makes it far worse. Everybody deals with it their own way, I suppose. If O2 works, I'd say it's likely it is indeed CH since I don't think it's very effective on other types of headaches or migraines. In terms of food, I offer two comments: Is it possible you're eating something that is a trigger for you? Maybe even a common food additive, rather than a specific food? Have you tried an elimination diet, similar to what is suggested to narrow down food allergies? The other thing that comes to mind is blood pressure. Maybe your blood pressure changes after eating, which can trigger an attack in some. For me, almost any sudden pressure change, internal or external, can be very problematic. Anyway, I really hope that you figure out the food thing, and I really hope your attacks stay "bearable" in comparison with what others might experience.
  11. Sorry to hear they came back after going off prednisone, but it was probably good you went off of it. I just wanted to offer some encouragement: My last cluster was also way longer than usual, and I was getting really worried I was turning from episodic to chronic. However, it did end, although the remission time was shorter than usual. That said, I've had better luck this cycle--so many mitigating factors. I hope this longer-than-usual cluster comes to an end soon for you.
  12. I agree with CHfather--oxygen has been a godsend. Doctors do seem oddly hesitant to prescribe it--I had to tell mine that if he didn't, I was going to use a welding tank anyway...but I'd rather have proper medical oxygen. Luckily he relented and I have an enormous tank--truly worth the hassle of getting.
  13. I don't know if it's causal, per se (could be), but I too find that treating the neck is key. I use acupuncture, stretches, and capsaicin patches to treat the neck during a cluster--vital in terms of reducing frequency.
  14. I'm very squeamish when it comes to alcohol these days. During an active cycle it's a guaranteed ferocious attack, and as others have mentioned, I have gotten hit hard a few times by alcohol outside of an active cycle. I too get nervous about triggers and extending/reactivating a cluster if one seems to be winding down. As Pebbles mentioned, "the beast is strange." Pebbles does ok with beer, but it's even worse than wine for me--different people, different reactions. It's October now--would be interesting to know how it went...
  15. Outofcontrol, I'm not sure about the Coke , but treating the neck is part of my approach too. However, I use capsaicin patches instead of ice, especially helpful at night.
  16. As CHFather said, yes and yes (sort of) here too. Really sorry to hear that the oxygen didn't work so well for you--I usually have quite good results. The pattern you describe is similar to mine. The yes-sort-of is that I haven't had success in aborting a cluster in the beginning, before the harsh 10/10 daily attacks start, but I have broken the 10/10 period of a cluster once with aggressive acupuncture and once with prednisone. However, I've also had times that they didn't break the cluster, but they helped. For me, acupuncture is a must during an active cycle--definitely helps the frequency/severity, and oxygen for attacks. I also take high doses of magnesium, which I think helps. By the way, for the slower 2/10 (or a bit stronger) attacks, I find that nasal spray with capsaicin is surprisingly effective--the brand I use is called Sinol. I really hope you find something (or a combo) that works.
  17. Yes, I know that list all too well--I get all of those CH symptoms too, and a couple that you listed under migraine and the whole list of triggers, with one huge difference being the urge to lay down. For me, laying down makes a CH attack worse, and it seems to be one aspect that differentiates CH from migraine, although it might not be the same for everyone. I definitely agree with Pebbles regarding the oxygen--really effective for me in aborting a CH attack. I luckily have a big giant tank which lasts for a while--small tanks can go quickly because of the high flow. Acupuncture and high dose magnesium are also helpful in reducing the frequency/severity. I've had clusters with and without those, and there's a definite difference for me. I don't have experience with most of the meds you mentioned, although I have read that lithium is helpful for some chronic CH sufferers. It sounds like maybe it didn't help for you though. I agree with you about Imitrex--not my favorite at all, but better than an attack. I luckily live where dipyrone is still available--it is not used in many places because of a very rare but very serious potential side effect. It's really too bad because for most people it's a safe, effective pain reliever--I find it very tolerable compared to and indeed more effective than triptans, ergotamine, etc. I only take that though if I'm not at home near the O2, which is the fastest way to stop the pain for me. If you have CH, and it sounds like that could very well be the case, high flow oxygen may be the answer. I read about oxygen therapy a few years ago, but it wasn't until last year that I finally got some and it has made all the difference in the world, including making being in an active cycle a little less stressful. When an attack comes, instead of stressing about having to yet again take some harsh meds and hoping and waiting for them to kick in, I know relief is 8 - 15 minutes away, no side effects. If you haven't tried it, maybe it would be worth having a chat with your doctor about it. Best of luck!
  18. Hi, sorry to hear about your eye troubles. I get horrifying pain in my eye during an attack, and usually experience copious tearing and temporary eye "paralysis," and lots of eyelid twitching (throughout the cluster), but only on my CH side. Maybe consult an eye specialist, just to make sure it isn't a separate problem happening coincidentally at the same time as your CH. The problem is, as many of us have experienced, that doctors have a hard time diagnosing and treating CH. I'm not a huge fan of Imitrex, but some people have good results. High flow oxygen works really well for me during an attack. In any case, I hope you find relief soon...
  19. Hey, sorry to hear that O2 doesn't work very well for you. I know that there are some who don't respond so well with it, but I nearly always get significant relief from it. Are you sure you're using a high enough flow? For harsh attacks I find that super high flow is necessary. Regular acupuncture and lots of magnesium are also part of my strategy, and I've had positive results. Also, as much as I wish I could go all-natural with my approach, I recently had good results with prednisone therapy. Unfortunately I can't help you with any info on the effectiveness of the diet in reducing CH. I had a brief look online--seems there is a lot one can eat. I haven't heard of this before, but maybe it's worth trying out. I would have a bit of trouble because I don't eat meat, but if you do, it seems like there's reasonable variety. If you decide to do it, good luck! I hope you'll share your experience...
  20. Hi all, New member here--first post. I don't have an answer to your question about how long to wait, but I wanted to say that prednisone therapy worked for me, but I took a really high dose for a few days and then tapered--the whole course lasted 3 weeks. Last year I did the same and it was very effective for a short time, but the headaches came back even before I was finished tapering off. This year, the prednisone more/less broke the cluster, for which I am extremely grateful. I'm not 100% free of pain, but I'm taking meds or hitting the O2 once, maybe twice a week instead of daily. I avoid triggers (alcohol, etc.), get weekly acupuncture treatments, and take lots of magnesium--that plus the prednisone have made the awful intense part of this cluster much shorter than usual, but like I said, last year it didn't work as well. Five months seems long for prednisone, but I'm not a doctor. Prednisone is great at doing what it does, but possible side effects abound. That said, we all know how terrible the pain is, so if your doctor thinks it's safe and you're tolerating it well, maybe it's worth trying. Let us know how it goes--good luck!
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