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Just found you'll and I thought I was alone.


Jackie mielniczek
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Ive Been suffering with cluster headaches for almost a year now. I had a hysterectomy and 3 weeks later I started having lower head pain and headaches above my eyebrows temples and Even in my cheeks Saw an  ENT did surgery, didn't work and was referred to a neurologist. Have taken every medication under the sun and nothing is working. Taking Topeamax now but still suffering 24 hours A-day 7 days a week & in execution pain and no one can help me. Pretty desperate at this point The only thing that actually works is Ibuprofen and that just takes the edge off for 3 hours. Hoping somebody can give me some advice.

Thank you  in advance. 

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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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Jackie, the primary thing you want from a doctor, if you have CH, is a prescription for oxygen.  This post will give you a lot of info about CH treatments: https://clusterbusters.org/forums/forum/6-clusterbuster-files/  

It's not clear to me that you have CH, which doesn't really cause severe pain 24/7.  If you are having severe 24/7 pain with periods during the day when the pain is worse, and if you have tried standard CH medications without relief (particularly if you have tried oxygen and also tried injectable sumatriptan, or Imitrex), it seems more likely to me that you might have a condition that is very similar to CH but treated differently, called hemicrania continua (https://www.ninds.nih.gov/health-information/disorders/hemicrania-continua#:~:text=about related topics-,What is hemicrania continua%3F,both sides of the head.)

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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. 

5 hours ago, Jackie mielniczek said:

I don't think my neurologist knows what to do with me.

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.

 

 

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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. 

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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 

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On 1/31/2023 at 2:52 PM, Jackie mielniczek said:

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? 

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. 

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43 minutes ago, Shaun brearley said:

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 

@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 

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