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Everything posted by Alyssaaaa
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Thanks @CHfatherand @Bejeeber. I'm on Day 18 since my first headache post-op and it's definitely a normal cluster episode....ugh! Appreciate your insights, you both are always a wealth of knowledge and support. I was unaware that epinephrine was a trigger but good to know for future.
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I was just considering this actually! After all CH is so bizarre as it seems to just come whenever it wants and go whenever it wants. Has always made me feel like it has a mind of its own or is being possessed by some living thing inside of us....after 19 years of dealing with this I'm open to any possibilities! Lol
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Anyone have a recommendation on vitamin C supplements? Most supplements are max 1,000mg and to get 3-5g per day that's quite a bit more. Open to suggestions!
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Hey! I know this is an older thread but thought I would add my experience. I've had COVID three times now. First time I got COVID was in June 2022 and it was a pretty bad strain, I was super sick for 2 weeks. During this time I was not in a CH episode, I was actually in the middle of a 2-year "remission" as I sometimes call it. So, no effect. Second time I got COVID was December 2023. The COVID wasn't fun, but not as horrible as the first time. My most recent episode was a LONG one, lasted all the way through April - September 2023. So when I got COVID I was not in an episode of CH and they weren't effected by the COVID. Then another CH episode started back up again in February 2024 and lasted until March 2024. But that's pretty long after being fully recovered from the COVID so I still don't see they were effected by it. Third time I got COVID was 5/10/2025 and it felt mostly just like a bad head cold that lasted about a week. On 5/31/2025 a CH episode started after about 14 months of no attacks. This time I was curious if it had an effect. Definitely worth noting I did also get a dental implant inserted on 5/30/2025. So I guess it's hard to say! Curious to hear other people's experiences with COVID and CH.
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I’m back! Headache update/Journal - Message of newfound hope
Alyssaaaa replied to cluster-schmuck77's topic in General Board
@cluster-schmuck77 Thank you for sharing this update and these insights. I'm so sorry to hear you've been dealing with these since you were only 8 years old. That is so young, I was 14 when they started and I feel like I'm usually in the younger bracket of CH sufferers. I'm 33 now, so almost 2 decades of this hellish rollercoaster. Accepting the fact you may have CH for the rest of your life is not easy, and I think I speak on behalf of everyone when I say that. I've found that I go back and forth between being hopeless and hopeful. We are still young so who knows where science will be in the years to come. The human spirit is amazing and us CH folks (and other severe headache sufferers) are truly in a league of our own. We live to fight another day and it sounds like you've made some leaps and bounds in your CH management journey. I'm so happy for you and hope you continue to have this great response. Out of curiosity, how much magnesium do you take per day? Cheers! -
Hi! No I haven't, but this is interesting. I've only done occipital nerve blocks twice. Each time I got relief from my episodic CH for only like 1-2 days. From a CH standpoint, this injection would likely help or do nothing. I don't think it would hurt or trigger anything. Good luck and don't forget to report back!
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Hey all! I've been an episodic CH sufferer since I was 14 Y.O. and I'm 33 now (almost 20 years). I've had lots of dental work over the years, braces, Invisalign, wisdom teeth pulled, lots of fillings, root canals, cleanings, etc. and never really found that any of these procedures ever triggered a CH attack or an episode. Obviously if I'm in an active episode I avoid the dentist like the plague and barely leave my house.... My last CH episode ended in Feb 2024 so it's been almost 1.5 years with no attacks, thank God. It varies, but typically I go 6 months to 2 years between attacks so I know I'm sadly nearing the end of this amazing "remission" and they're bound to come back sometime by the end of the year. 1 week ago I got a dental implant (bone grafting and screw installed) where my tooth #14 would be (upper tooth near the back). Leaving the appointment I was totally fine. The next day following the procedure, I walked my dog and midway through my walk I felt the prodrome, then progressive CH symptoms on the same side as the implant. I got home as quickly as I could popped a few Advil, hit the oxygen and chugged a coffee and within about 30 mins I went from a level 6 pain to 0. Next day, no headaches so it seemed like a false alarm and figured it was just my trigeminal nerve acting up from the surgery the day before. Over the last few days, I got a handful more of these same headaches, mimicking the symptoms of my CH pretty much to a tee, but was able to kick them in about 30 mins with Advil or Tylenol and some coffee. Annoying but not a big deal. Normally my abortive routine requires imitrex 100mg and/or 15 mL/min of oxygen for 20-25 mins, etc. So again, at this point still just thinking my nerve is acting up. BUT last night, I woke up at 2am and had a ripper. My headache lasted 4 hours and wasn't responding to Advil, Tylenol, or the oxygen. Usually I respond to oxygen very well so I was a bit surprised I was at level 8 pain almost the whole time. Finally I gave in and popped an imitrex 100mg and within 20 mins I felt the amazing relief I needed so much and it quickly went away and was able to go back to sleep. Then today I got another headache after the imitrex wore off, I took 4 Advil a coffee and oxygen and it went away without having to take another imitrex. My oral surgeon is amazing and the X-ray of the implant is perfect. Everything went very well with the procedure. When I brought this up he said I'm the first one that's had this experience post implant surgery and he's been doing it for over 20 years. Of course *sigh* Has anyone else who is diagnosed with episodic CH ever had a dental implant? If so, what was your experience afterwards? I can't find any data showing they trigger CH episodes. I only found a medical case study actually showing the opposite, a guy got an implant and had 5x longer remission from his episodic CH than he normally gets.
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1 week later update: I received an occipital nerve block which contained lidocaine and dexamethasone (corticosteroid) from the pain management neurologist team at Stanford. The block offered me two full days of relief. Headaches came back on day 3 at my regular pain levels and frequency , they said it could take up to 7 days for the steroids to fully "kick in", but I'm not too hopeful at this point.
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Hi everyone, I suffer from episodic CH. Over the years I've had a total of two occipital nerve blocks administered by my neurologist, neither included steroids. I guess it was just lidocaine that was injected as my nuero said she doesn't like doing the nerve blocks with steroids. This probably explains why neither procedure provided me more than about 12-24 hour relief. From what I've read online if the nerve block includes the steroids it can offer several days or even weeks of relief. In your experience, have you had an occipital nerve block with steroids? Did it help you? Who administered it, your neurologist or a pain management doctor? Any intel is appreciated, thanks!
- 4 replies
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- nerve block
- steroids
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(and 3 more)
Tagged with: