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CHTraveler

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CHTraveler last won the day on October 22 2016

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  1. 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 l
  2. 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 hop
  3. Yes, sometimes during severe attacks, especially those infamous night ones.
  4. Please let us know about your results--good luck!!
  5. 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)
  6. 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'
  7. 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.
  8. 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.
  9. 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.
  10. 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...
  11. 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.
  12. 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/
  13. 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
  14. 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
  15. 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
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