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Cheryl

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  1. Cheryl

    Women with CH

    @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 wakes me up but it's not really bad enough to need the zomig/sumatriptan and can usually go back to sleep. I sometimes get a second one between 2-3 PM and sometimes I need the shot of zomig/sumatriptan and sometimes an extra strength tylenol does the trick - but the D3 doesn't seem to be doing anything and I'm pretty sure if I stopped the topamax I'd be back to 7-8 headaches a day.... unless there's something additional about the D3 I don't know about? The last time I had these they started in November and stopped in January but if it doesn't stop raining here I'm pretty sure they're going to keep continuing LOL... We're going skiing in February and I'm hoping they either stay the same or go away. I agree though, I think they'll be gone by the spring. I've always always had issues with the fall season with allergies and had trouble with the time change and sleeping so I'm thinking my 40 year CH free was just luck. Happy New Year!!
  2. Cheryl

    Women with CH

    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 20s - not as severe but still awful. They started pretty regularly (3:30 every morning) but with the medications are all over the place now sometimes 7:30 AM, sometimes 5:30, sometimes 11:30 sometimes 4:30 or 5:30 - all over the place and then sometimes I'll go 3-4 days without. But they always show up when it rains. Who needs a weatherman! One thing I noticed is that when the headaches came back my hot flashes disappeared!! @spiny the differences between male & female was from a survey done in 2008. The United States Cluster Headache Survey was the largest study of cluster headache sufferers ever completed in the United States and at the time was also the largest study of female cluster headache patients ever presented. There were 183 questions and 816 men and 318 women responded. Apparently the questionnaire was just placed on a website from Oct - Dec 2008 and respondents had to have been diagnosed with CH by a neurologist. I found it here: https://www.ncbi.nlm.nih.gov/pubmed/22482825
  3. Cheryl

    Women with CH

    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 peak after age 50 2) Women are more likely to have some family history of CH and migraine and can also have increased risk of Parkinsons 3) Women are more likely to experience sensory, language or brainstem auras 4) Women are significantly more likely to experience pain in the jaw, cheek and ear than men 5) Women tend to develop more "migrainous" symptoms than men, are much less likely to have the alcohol trigger and significantly less likely to start an episodic cluster in the October-December timeframe (although that doesn't apply to me because both of mine happened in October-December.) I've noticed that my headache frequency goes up when there's a large barometric pressure change and when I alter my sleep schedule. Thanks for the reply -- I'll just soldier on in the general forums. Best, Cheryl
  4. Cheryl

    Women with CH

    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. Cheryl

    Lilly & CGRP

    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. Cheryl

    Help needed!!!!

    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 had to use it at all. So glad I discovered this forum! Best of luck.
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