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About Cheryl

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  1. @CHMom Hmm.. I was on prednisone for a month in the beginning w/sumatriptan for the pain, now on topamax w/zomig which seems to be working better than the prednisone. I take D3 (10,000 mg/day), melatonin (10mg/night), magnesium, etc. and still get at least one headache a day and I'm feeling pretty lucky because it's better than the 7-8 I used to get back in October/early November. The one a day used to be pretty regular at about 3:30 AM, then they got pretty unreliable for awhile and went up to 2-3 a day before I went on the topamax. Since I went on the melatonin, the one the wakes me up still
  2. Hi @CHMom and @spiny. I thought I was getting a handle on my 2nd round of CH but now not so sure... So weird that it should show up again at 62 after 40 years... We (Doctor & I) were pretty sure it was another round of Episodic but now not so sure since it's outlasted the last episode I had in my 20s which lasted 2 months. This one's going on almost 3 months. It started in October on a camping trip and headaches have creeped through the prednisone and now the topamax - they seem to creep through more when it rains and this year it's rained a LOT. These are different than the ones in my 20
  3. I was kind of lucky because I was correctly diagnosed when I was 20 in the 1970s when I was living in England and the stuff they gave me when I lived there worked magic until the episode ended in January. Then 40 years later here I am again at 62 and they're back. I guess I can see maybe why there's no need for a separate forum since we get treated the same. But .. you're both kind of wrong because the symptoms are not "exactly" the same. There are a number of differences that studies have found: 1) Women tend to develop them at an earlier age and more likely to develop a 2nd pe
  4. Given that the largest majority of CH sufferers are men, and women are frequently mis-diagnosed - does it make any sense to start a general topic solely for women suffering from cluster headaches? I'm having trouble with healthcare providers in this area and there also seems to be very little data on women sufferers. Just an idea. Thoughts?
  5. Sorry if this has been answered but is this the same as their Emgality drug which is already approved or is this something new. Last I read they had not received FDA approval yet but were hoping for end of this year/1st quarter 2019. Yes? No?
  6. Wow I guess I'm lucky. My doctor prescribed prednisone and it's working wonderfully. Coffee actually makes my headaches worse as does any extra caffeine, alcohol & chocolate. Before I got the prescription I did find that melatonin at night did seem to reduce the intensity/frequency but I still needed rexatriptan melty pills for the pain. Once the Prednisone got prescribed they went away. Still on it and will be for another 2 weeks. We'll see what happens after that - mine are episodic though, not chronic.
  7. I was in the throes of a horrible episode and have found that Prednisone is working wonderfully. I haven't had a headache since the 2nd day I started dosage and my system seems to take the drug pretty well. Started at 60 mg a day (20 mg), down to 40 mg a day and next week down to 20 mg a day if all goes well. Of course, it's going to interfere with my cholesterol but it's worth it. They were so bad (8-10 a day) my neuro skipped the verapameil step. I'm probably one of the lucky ones because I have episodic versus chronic but it's still working well. I got Sumatriptan Nasal spray but haven't h
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