Hello All,

I've been lurking around for a while but finally decided to join and post since I'm getting some valuable info from this site.
Im a 27 yr old male and have been suffering with clusters for the past 11 years. The sad part is that only recently have I realy been taking this whole thing super seriously. i still remember my first hit in high school. It literally brought me to my knees in the middle of class. Nurse called parents to say I couldnt drive. By the time my mom got to school, I was fine.
My mom had suffered for a few years with migraines from an epidural issue when I was born so any doctor immediately just brushed me off as migraines and gave me Imitrex in pill form to take at the first sign of attack. Well, we all know that doesnt help at all. by the time the meds kicked in, I was almost done anyway. For the first few years, I just used OTC to help kepp rebounds from happening but would just suffer through it. Luckily I think I'm partly narcoleptic and my only abort that helped was to lay down, toss and turn, scream a few times and fall asleep.

Since my clusters in the beginning were short 3-4 weeks with 6 month breaks, I just suffered. I continued to go to more Drs with the same response; migraines, try this med to abort. I got so frustrated by this I just cut out Drs and suffered.

It wasn't until I met my wife that I finally got help. About 2 years into our relationship (3yrs ago) that her mother looked up my symptoms and told me to check out custer headaches. I fit the bill to a "T". So i started to look around. When I saw that there were poeple that deal with this every single day, I downplayed my situation. Am I just complaining when there are people who have real pain?

Finally, last year I found a neurologist after 2 cluster with only a 2 week break. She finally diagnosed me as Cluster headache and started me on Verapamil 120 mg. It immediately aborted my cluster. Now the wait was on, when will the next one come? Leads me to about 5 weeks ago, my cluster came on slow, 1-2 hits a week, then 3-5 then everyday. I'm currently in week 6, the verapamil isn't helping and now I'm starting a higher dose along with a prednisone taper until my follow up with my neuro in 2 weeks. I also just had a blood test to check my vitamin D level. Im intrigued by this D3 thing that people are working on.

So there's my story. Hoping to find some relief, grateful for this site, and in awe of all those that have suffered longer and worse than I.

TL;DR version:

• 27 yr old male, suffering for 11 yrs

• started 120mg verapamil 6 months ago w/ little help

• upping to 240 MG and prednisone taper to get out of current cluster

• Perfectly seasonal, spring and fall 6 weeks at a time

• 1-2 hits/day usually KIP 5-6 few reaching into 8-9

• constant shadow during cluster

• alcohol is only trigger I can pinpoint

• scheduled appt with allergist next week

• tested for Vitamin D levels

Actually I do have a terrible family history when it comes to heart problems. I actually see a cardiologist every 6 months since I turned 18. Even checked for PTO as a possible cause.

Also forgot to mention I use Imitrex Nasal sprays but they really dont seem to help much.

Also, just got a call about my results for Vitamin D.. 23.9 they are actually putting me on a presciption dose of Vitamin D to get my levels up. I think they said 50,000 Iu/week

Hi,

Gonna have to comment re usefulness of nasal spray.

Of course it is all relative and we all may be clusterheads..... but different strokes for different folks.

Anyway....MY abort of last resort is Zomig NS (5mg)...5-8 mins, 99% effective). I never leave home without it.

Injections make me feel "ooky"....cost is ridiculous for either...but I have found an online manufacturers coupon for the Zomig that saves $30 of my $75 copay.

Give 'er a try mebbe......

Best

Jon

Like you I'm episodic, since the late 70's. Been pain free for 4 years on the D-3 regimen, I NEVER go off, it's just a daily ritual for me. My physical last week showed the D-3 level at 86.

Joe

Updating my story. I immediately started the vit D regimen in May. My levels went right up into the 40s and I started feeling better immediately. I always get my cluster right around Thanksgiving, when we get our first really cold week. This year, that did not happen on schedule so i had just been waiting for it to come at least for a shortened period of time. and... NOTHING!!! I have been headache free since May and have been able to continue drinking alcohol even though that was my consistent trigger during the holidays. This week I went and got my D3 level checked and I am up to 84!! I am so thankful for finding this routine and I truly hope that this success continues. It feels amazing to have my life back around the holidays....

What I'm taking...
10k IU vit d3
2400 mg fish oil
120mg verapamil