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Want to connect with people dealing with hypnic headaches

Posted by Avion @benchi300, Jun 18, 2023

I'm looking for people that are dealing with hypnic headaches for a few years. Besides the usual treatment did you find anything new that helps ? have anyone tried the injections (Aimovig, Ajovy, Emgality) they usually give for people with migraines and if so , did it help with your hypnic headaches? Also if caffeine is still your 'go to' did a special brand worked better? Thanks for your help!

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Moderator
Lisa Lucier, Moderator | @lisalucier | Nov 9 10:57pm
In reply to @duchess926 "@lisalucier I’m not sure where to post exactly regarding Hypnic Headaches? I did make two posts..." + (show)
Profile picture for duchess926 @duchess926

@lisalucier I’m not sure where to post exactly regarding Hypnic Headaches? I did make two posts to various other people, but please feel free to move my post to wherever they should be. I may be the most recent person to the group of hypnic headaches. All I want to add is that I’ve done the same medication as everyone else and the latest thing I have done is to get 31 shots of Botox to my head forehead, back of head, the neck, etc. to hopefully reduce the amount of head pains I get. The only medicine I am currently using when necessary at night has been rizatriptan. For years, I did take Fiorcet which actually helped and very quickly. I never had any side effects from it. I had to recently stop using it because I built up an immunity to it. now, hoping for success with the Botox shots. My neurologist said that with each round every three months, it becomes more and more effective.

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@duchess926 - you are in exactly the right spot, as you are posting in this discussion on Mayo Clinic Connect:

- Want to connect with people dealing with hypnic headaches https://connect.mayoclinic.org/discussion/trying-to-connect-with-people-dealing-with-hypnic-headaches/

I don't personally have headaches, but I do have allergies and asthma, and I've had the experience when suddenly a trusty medication no longer works for you. Such a bummer. Is the rizatriptan you use at night as needed helpful? Are you at a sufficient distance from your injections to know if this treatment is working for you?

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duchess926 | @duchess926 | Nov 10 3:27pm
In reply to @lisalucier "@duchess926 - you are in exactly the right spot, as you are posting in this discussion..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

@duchess926 - you are in exactly the right spot, as you are posting in this discussion on Mayo Clinic Connect:

- Want to connect with people dealing with hypnic headaches https://connect.mayoclinic.org/discussion/trying-to-connect-with-people-dealing-with-hypnic-headaches/

I don't personally have headaches, but I do have allergies and asthma, and I've had the experience when suddenly a trusty medication no longer works for you. Such a bummer. Is the rizatriptan you use at night as needed helpful? Are you at a sufficient distance from your injections to know if this treatment is working for you?

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@lisalucier - When necessary, I take Rizatriptan at night for my Hypnic Headache and it usually works. I had been taken Fiorcet for years as it was fast acting, no side effects and I was able to fall back to sleep. Felt really good upon awakening. However, I think I’ve been building up a resistance so switched to Rizatriptan. As of now, (Nov, 10), I’ve completed by second round of Botox shots for pain. It’s been 4 days but I’ve had two nights without a headache and hope it keeps up. I also had an unusual nerve pain procedure for my Trigeminal Nerve Pain. I’ve been dealing with two separate issues for years. For Nerve Pain, I discovered something called Scrambler Therapy. I read about it thru Mayo Clinic but found a clinic in New Jersey that does the procedure. Totally non-invasive and not painful. Also, so far, very good…..I’ve been dealing with two pain issues for quite some time and really want to be medication free.

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taterjoy | @taterjoy | Nov 16 12:03pm
In reply to @benchi300 "Hello did you find that the indomethacin kept its efficiency for a long time compare to..." + (show)
Profile picture for Avion @benchi300

Hello did you find that the indomethacin kept its efficiency for a long time compare to other meds that would loose its efficiency over weeks or months? Its important to take the 'slow release' tablets? I will discuss it with my neuro. Do you also need to take the melatonin now? I've read various comments here and indomethacin seems to be the 'go to' for hypnic headaches after caffeine... For a while caffeine alone was doing the job for me but the past 4 years it has lot some effect and is not enough. The only thing with the indomethacin its a nsaid wich could be bad for the stomach etc.. May i ask how long youve been taking it ? Thank you

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@benchi300 I’m still taking indomethacin nightly. Along with Melatonin. I do take a preventative prescription medication also, due to the G.I. risk of indomethacin. It’s called Protonix (pantoprazole)). So far it has prevented gastric complications.

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