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ClusterBusters

CHMom

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CHMom last won the day on December 27 2018

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About CHMom

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  1. CHMom

    Women with CH

    Hi @Cheryl - So sorry to hear about this recurrence after 40 years! What a drag! I hope you can get it under control soon. I highly recommend the D3 regimen. I started it for the first time at the beginning of this month (December), and after 2 weeks, my CHs are totally under control. The D3 regimen basically aborted my cycle. Sometimes I will wake up feeling like I have a CH coming on, but once I get out of bed, oddly, it just goes away on its own. I rarely even have to take ibuprofen for these headaches, and I haven't had to take a Relpax (triptan) in 2-3 weeks. And even though you're cycle has now lasted 2+ months, I'm not sure I'd call your condition chronic CH. The cycle I had last year lasted 5 months (it was awful - my worst ever), but it finally ended on its own last May. Here's hoping yours ends MUCH sooner than that. Give the D3 a try. Best.
  2. CHMom

    Women with CH

    Hi @Cheryl and @KJosie - Just want to introduce myself as a fellow female CHer. I was diagnosed with episodic cluster headaches 11 years ago, when I was in my early 30s. I can share all kinds of stories with you about cluster headaches during and after my pregnancies, but figured I'd just say hello and introduce myself before I unloaded a lot of personal info about myself on both of you. I'm very happy to make your virtual acquaintance. And Cheryl, thanks for starting this important thread. I can see starting threads on CHs and pregnancy, CHs and breastfeeding, CHs and menopause, all kinds of stuff specific to women.
  3. CHMom

    Interesting sleep/CH research

    Sleep disruptions have definitely been a huge trigger of CHs for me. Are they the primary or underlying cause of my cluster headaches? I don't know and I tend to doubt it, but I do know that patterns of interrupted sleep (sleeping then waking then falling back to sleep then waking again, and on and on) have definitely triggered CHs for me. Last year I had one of my worst cycles ever, and it was definitely triggered by my then 2-year-old son's terrible sleeping patterns and constant night waking.
  4. CHMom

    Oxygen concentrators?

    Thanks, @CHfather. What you're saying is exactly what I was afraid of. Sigh. More wrangling with my neurologist.
  5. CHMom

    Oxygen concentrators?

    Hi CH fam - Last week I convinced my neurologist to prescribe oxygen for me. I've never tried oxygen for my CHs before, and I'm praying that it works so that I can ease off the Relax, which I'm taking every day. My neurologist told me was going to prescribe an oxygen concentrator. I just googled this, and it's different from getting an O2 tank, which is what I was expecting. Does anyone have any experience using an oxygen concentrator? Tips? Advice? Thanks!
  6. CHMom

    Length of Vit D3 protocol?

    @muggle - I am so happy to hear of the success you're having with the D3 regimen, and thanks for the encouraging words! @Batch - Thanks for your recommendations and for the additional explanation. The biochemistry behind this regimen is fascinating, and the results chart is especially helpful in giving me some idea of what to expect and when. I started the loading dose today and am feeling really optimistic about this course of action. I don't think it's a coincidence that my episodic CHs start during the time of year when the days are shortest with the least amount of sun (and therefore D3 in my body, and since I'm a 40-something woman, I probably have even less D3), so I'm really hopeful this regimen will help. Thanks again everyone
  7. CHMom

    Length of Vit D3 protocol?

    Just wanted to chime in and say that I started the D3 regimen this past Saturday, after seeing a few posts about it on this forum. Thank you @glo for starting this thread and thank you @Batch for sharing your advice, experience and expertise with this regimen. I'm still getting cluster headaches, but then again, I'm also only 3 days in, and I also forgot to double down the first few days with a loading dose of 50,000 IUs of D3. @Batch Do you think I could start the loading dose tomorrow, and if so, should I take all the D3 at once, or break it up over the course of 2-3 meals during the day? I've suffered from episodic cluster headaches for 11 years now. One of my CH cycles just started about 10 days ago, and I'm at the point where I need to investigate alternative therapies. I've used both Verapamil and prednisone in the past to end cycles, but both have lost their effectiveness. The last time I tried using prednisone, early last March (2018), the headaches stopped while I was on the prednisone, but as soon as that course of treatment ended, the headaches came right back. This last cycle was my worst ever, lasting 4 1/2 months, and toward the end of the cycle, the headaches were so painful I thought I would die. My neurologist recommended Topomax, but I remain reluctant to try it due to the many side effects. I can't afford to lose any weight or impair my cognitive functions. I regret not having done the preliminary lab work for the D3 regimen, but after my last cycle and after 11 years of this, I am so desperate for a viable treatment to stop the cycle I'm currently in (and hopefully end them permanently) that I jumped at the chance to try the D3 regimen when I first read about it. Other reasons I started the regimen without doing the lab work first: It takes too long to get an appointment with both my PCP and my neurologist. I didn't want to wait 2 - 4 weeks for an appointment. Then I'd have to wait another week to get lab work done. Then another week to get results. My healthcare providers seem very reluctant to request any kind of lab or diagnostic work. My neurologist is really pushing Topamax. I just felt like I needed to take matters into my own hands. Thanks for listening, and thanks @Batchfor your advice and answers to my questions.
  8. I ended up buying a bottle of CBD oil today to try when I go to bed tonight. The brand I purchased is called "Saving Grace Oil." I have no idea what the concentration is; I'm concerned it may not be concentrated enough, according to what @Freud recommended. It looks like the oil I bought only contains 11 mg of hemp extract, so I'm gathering I didn't buy the highest-quality oil, unfortunately. Not sure if that will affect the effectiveness. Sigh. I'm really hoping this will prevent a cycle.
  9. Thanks for sharing your success story with CBD. I'm interested in trying it for my cluster headaches. I've used traditional, FDA-approved meds to deal with my episodic cluster headaches for the past 10+ years. I'm beginning to consider alternative therapies, including CBD and LSA seeds.
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