Jump to content
ClusterBusters
Steve A

15 year remission?

Recommended Posts

Hi Everyone,  I am a 51 year old male who hasn’t had a bout for 15 years. Prior to that I suffered once a year for a month as is typical. Late last month they started again. Anyone else experience such a long time in between?  And if so, did it start back up with the same patterns? Did it come back every year?  Just want to know what I am in for this time around. Also, the duration of the attacks seem briefer for me. Usually from onset to complete relief is only about a half hour. But last night had two attacks in the span of three hours. That was new. Last question, is O2 effective for half hour attacks or is it easier to just ride it out?  I feel like a noob with all these questions, but sadly I’m a vet. Thought I was actually done with these things. But here I am again. 

Share this post


Link to post
Share on other sites

Hey Steve,

From my experience, it's best to jump on the oxygen at the first sign of an approaching CH.  The sooner the better.  The longer you wait, the higher the pain level and that ends up making your oxygen abort times longer.

I'd also suggest you check out the anti-inflammatory regimen with 10,000 IU/day vitamin D3 or more along with the vitamin D3 cofactors.  You can download a PDF copy of this treatment protocol at the following vitaminDwiki link:

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

I suspect the return of your CH is due to a drop in your 25(OH)D3 serum concentration (vitamin D3 concentration).  Are you getting less direct sunlight than usual?  We've found that a vitamin D3 insufficiency/deficiency is very common among CHers.  The anti-inflammatory regimen can fix that deficiency and in the process, get you back CH pain free.

Take care and please keep us posted.

V/R, Batch

  • Like 1

Share this post


Link to post
Share on other sites

Thanks Batch. Went to my primary care today and sadly I knew more about clusters then he did. I left with a prescription for a nasal sumatriptan and a referral to a headache specialist nearby. I’m gonna read up on the D3 deficiency at your suggestion. Thanks much. 

Share this post


Link to post
Share on other sites

15 years and they came back? I'm on year 20 and bust whenever I used to get them. Was chronic until I got it right. First medicine was methysergide and it doesn't take a scientist to see that is related to lysergide. That's really all you need to know to start researching. Peace 

Share this post


Link to post
Share on other sites
13 hours ago, Deadheadrob34 said:

15 years and they came back? I'm on year 20 and bust whenever I used to get them. Was chronic until I got it right. First medicine was methysergide and it doesn't take a scientist to see that is related to lysergide. That's really all you need to know to start researching. Peace 

Hey Deadheadrob34.

are you saying you have been cluster free for 20 years?

Share this post


Link to post
Share on other sites

I had a ten year break! Then they returned. Different and worse unfortunately. Finding CB was a lifesaver for me. Now, I have not had a full cycle for years. Rogue hits? Yes. Mostly due to weather or altitude changes. Or surgery where epinephrine was used in the anesthesia. 

I am sorry that yours have returned as well. But very happy that you found us!

Share this post


Link to post
Share on other sites

Nasal sumatriptan is working. But this time around I’m getting 2 to 3 daily. Used to be one every other day in previous cycles. I only use the spray on the first one and ride out the other one or two which thankfully are only lasting 15 minutes or so. Sad part is my insurance company will only cover 12 doses in a 24 day period. Not gonna cut it for a CH sufferer. Pharmacist told me to have my doctor prescribe the injectable form as a work around. Which he did. But insurance isn’t buying it. So if I want the miracle drug that works for me, I’m out of pocket $2,000 for shots or $900 for spray. Don’t see the specialist until Feb 26th. Hoping I’m out of this cycle soon. 

Share this post


Link to post
Share on other sites

Try GoodRx for the script. It should lower the cost.Be aware that you are limited as to how many you can use in 24 hours. You can split the injections too. 

O2? 

Share this post


Link to post
Share on other sites

I’m hoping to discuss O2 with the neurologist later next month. Hopefully I’m over this bout by then. For now the sumatriptan is working. I’m only using the meds on the first attack because it’s the worst one. The other one or two aren’t as bad and I can ride them out. Thanks for the tip on the GoodRx. I’ll definitely check it out. 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×