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Hi @Jackie mielniczekplease get off the topamax b4 your body starts getting used to it . So hard to get off it , and as people have said it will do nothing for your headaches .It will make you lose loads of weight plus you will start getting mood swings, plus you start to forget things , your short term memory gets shot to bits . Plus you start to miss words out of sentences when your speaking to people . Horrible med !!!!! You really need to see a headache specialist, get a proper diagnoses. Then if you have CH the first thing you need to get is O2 simple as that . Good luck keep us posted

New to the forum. Not happy to be here. Was wondering how long everyones typical cycle lasts. Im 14 weeks in, my last CH was about 2 weeks ago. Still getting 4-5 very mild (what I think are shadows) pains lasting maybe 10 seconds. Am I in the clear? Little bit about my ordeal if you care to read on. Diagnosed with CH at 41yrs old. No CH in the past 13yrs until October this past year. I remember 13yrs ago the same thing lasting only a few weeks. I didnt realize until now it could have been my first cycle. Started back up this fall. Woke up with a bad headache more of a tension headache all day with mild pain in the areas. The beast came day 2 in the evening. It seemed to go in 2 week intervals. 2hrs first 2-3 weeks, then down to over an hour for 2-3 weeks then to 45 and down to 25min. Intensity followed a similar pattern. Around 8 weeks they went back up over an hour for a week then down to 20min. 70% of my CH were between 8-10pm. I would get random breaks and go 1 day without CH, get hit then 2 days without, get hit... up to 4 days. This happened twice. Recently went 6 days with only shadows then had a very mild CH. I'm over 2 weeks since then with only shadows. Do the shadows ever go away? Looking forward to a cold beer. I feel for everyone on this forum, people just dont understand until you've experienced one. Nice to talk to others in my shoes.

Kat, my Neuro prescribed it for me about a decade ago. He handed me the script with 'Ask on your site how this works.' My reply was 'I'm 15 pounds underweight. Where is your trash can?'

@ZBM hey I’m a 30 year old female and I’ve been on the regimen since I was 26. The cofactors are nothing but good vitamins you should probably be on every day anyway. Magnesium (good anti inflammatory properties), and fish oil is good for the heart. You can even add any turmeric supplement in there too. Really good anti inflammatory properties there as well. @xxx will chime in shortly I hope. He is the d3 GOD

This is sickening. Topamax is awful and not a frontline treatment to start with. He has tried 'everything' with you and appears to be just going down his list of 'headache meds' to hand to you. That is awful and no way to treat a human being. I too would ditch it. Likely do a taper for safety sake, but I am not sure that is required with Dopamax. I'm guessing that yours are one sided based on the surgery, the diagnosis and the neuro. Is that true? Right there with you on the sinus surgery. We are female, so it is migraine or imaginary to many Neuros, so next up is often sinus issues! And no, the surgery did nothing here either. Nor has it helped countless others. Just like having teeth extracted has not helped. CHF is right on the O2 for CH. If it is Hemicrania, then Indomethacin is the drug of choice. And Jeebs is correct in that you need a headache specialist neuro, not a regular one. Hemicrania can be ruled out by a test drive in the Indo. If that is not it, then you need proper, best results medication and O2 for killing a hit. Are these headaches constant at the same level of pain or does it rise and then recede repeatedly? At times and over the long haul, it can seem like one headache all day when actually it is many of them. That stuff matters in a diagnosis. Have you had an MRI to check for abnormalities in your noggin? That should be at the top of the list!! For CH, it comes back all clear. Question: Are you taking HRT? Has it been adjusted based on your personal needs based on blood work? A sudden drop in hormones can create big problems for us and some of those are expressed in headaches. Some OBGYN's went nuts several years ago and refused to treat patients with HRT since it did not improve bone density. What they did not know and what was NOT reported is that most of the 'placebo' patients dropped out since they were so miserable, so all results were invalid! The yanking of HRT for any woman into menopause was horrid.

@Shaun brearley gosh I’m thinking back to my experience on topamax. It seriously had me so zonked out. I lost so much weight I looked like a zombie. What horrible stuff. When I finally saw my second neurologist in my headache journey he actually told me to UP MY DOSE. Needless to say he was history shortly after. If I were a doc it would literally be my LAST medication I would think to prescribe for headaches

Trust me I know the feeling. Verapamil is a calcium channel blocker and a lot of people with CH have success with it. They might need to play around with the dosage a bit to find what works but it’s worth a shot as a preventative. If you partner it up with the D3 regimen, you could save yourself a lot of pain. Just remember to take it 8 hours apart because the multivitamin has calcium in it. Read more about that on the d3 information link posted at the top banner.

@Gunner Wow a 13 year remission period sounds like a little slice of heaven. I would say you are on the right track, mild attacks or shadows after a few weeks of hell might mean the end of a cycle for you. I’m hoping this is the case for you!

@Jusnobody happy to know it led you to find us!! I expect to see a bunch of newcomers as more folks get to see it! DD

I had the same thought as @CHfather regarding the cluster-like HC (hemicrania continua) when you described your 24/7 symptoms @Jackie mielniczek. Even HC is unilateral though - are your headaches on one side at a time (which is a hallmark of both CH and HC)? The thing about topamax is it is a near universally reviled POS for being both ineffective and having the worst debilitating side effects (just as @kat_92 has described her experience), so since it is not helping you at all, well if it were me, I'd get off of it. Hate to say it, but if your neurologist isn't a headache specialist, you should seriously consider scooting on over to a specialist instead. Regular old non-specialist neurologists all too often don't know what to do with us.

Hi! I'm 24, and I was diagnosed with CH in 2018. I just went through a 4-year remission but just got caught Covid for the first time (can't believe I made it so long!) which triggered a cycle, sigh. I want to try the D3 regimen - I live in Minnesota and am probably way deficient (I just requested a lab test). My question is, is there anything I should do differently with the regimen as a young woman? I'm 5'2" and 115 pounds and I don't want to overload my system. The D3 I can probably handle, it's more the doses of the cofactors that I'm not so sure about. Any women out there have experience with or modifications to Batch's regimen? Any insight would be appreciated, thanks!!

They used to be 2-3 weeks long but a few years ago they shifted to 8-12 weeks long. Always changing....

Thanks for the advice! 6 months I cant imagine. Think I was lucky having the intensity fade after 6 weeks or so

hi Jackie. I’m sorry you have to be here. Have you seen a neurologist and been appropriately diagnosed? In my experience with topamax, it did nothing to help my headaches. It made me feel like I belonged in a nursing home. I was 22 years old and could barely eat or take a shower. It’s truly horrible medication and I don’t know why a doc would prescribe it for this? Have you or your doctor thought about verapamil?

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I don't think my neurologist knows what to do with me. I've only been taking it for a week and I don't feel even a bit better. Does the medication you've mentioned work well for alot of people?