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
  

This is an optimistic picture, especially since your doc appears to knows what to do.

Don't be surprised if the Verap dose has to increase. Many of us have taken uwards of 800 with no problems--unless you have a history of heart problems.

But adjustment both in what you take as well as dosing is common. Not unusual for a med to stop working and having to find a replacement: no predicting, just what's not uncommon.

Besides reading much here, you will find it helpful to explore other sites--

Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.

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

The nasal spray form is the least useful for Cluster as is the pill form.

Injection form is fastest. See tip, on left of this page.

Print PDF file, below, and use to discuss options with the doc.

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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

It seems noone has responded to your D3 inquiry yet. My input if you are currently having attacks is to start the D3 regimen ASAP,I mean get in your car and go to wal-mart,right now. I was in a similar situation to you when I first came here but I had yet to see a neuro so wasnt diagnosed yet. I him hawed around about the D3 thing for several weeks and was suffering attacks every night, many nights multiple attacks. For about 15 bucks I bought the main players ala D3 5000IU,Calcium citrate,fish oil and magnesuium. I started with a loading dose of 50,000 IU D3 for the first few nights then was taking 20k for another week or 2. Within 3 days of starting it my attacks became less severe within a week all attacks stopped. Ive since only had a couple of attacks in the last 14 weeks or so. There are TONS of people who swear by it,try it you have nothing to lose. Melatonin may help some as well before you go to bed. By the time I actually saw a neuro and was diagnosed with CH my attacks had stopped,I was still having some bad shadows during the day and he put my on Verapamil Im at 240 mg now and I have very few shadows,though the D3 actually lessens the effect of the Verap it appears,I try to take them as far apart as I can during my day to help reduce the counteraction of the drugs.

Hey Bmw,

Sorry I missed your posts... Wuz on travel since last Friday...

Your 25(OH)D serum concentration clearly indicates a vitamin D3 deficiency and that's likely contributing to your CH.  The vitamin D you were prescribed is likely vitamin D2...  50,000 IU/week will work, but as vitamin D2 not as effective as vitamin D3, it will take longer to build your 25(OH)D to the therapeutic level needed to prevent your CH.  Vitamin D3 will work much faster.

I take the following supplements to prevent my CH.  I buy them at Costco, but you should be able to find most of them at most supermarkets.

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The list of key supplements and doses contained in the example above are shown in the following table:

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Many CH'ers have found the accelerated vitamin D3 loading schedule a safe and effective way of getting pain free as fast as possible.  This loading schedule requires much higher doses than 50,000 IU/week vitamin D2.

This loading schedule totals 600,000 IU of vitamin D3 over a 4-week period.   I know that sounds like a lot but it works out to a little over 21,000 IU/day vitamin D3 over the 4 weeks.

Start this loading schedule at 20,000 IU/day vitamin D3 for the first two weeks.  In addition, take a 50,000 IU loading dose of vitamin D3 once a week for the first two weeks on top of the daily 20,000 IU.

Drop the vitamin D3 intake to 15,000 IU/day for the second two weeks.  At the end of the 4-week loading schedule, drop the vitamin D3 intake to 10,000 IU/day and see your PCP or neurologist for another lab test for 25(OH)D.

This vitamin D3 loading schedule results in an average increase in 25(OH)D of 60 ng/mL on top of the starting serum concentration.

You can read more about the anti-inflammatory regimen at the following link:

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Take care and please keep us posted.

V/R, Batch

Thanks for all of the replies. The prednisone cycle I was on got rid of the HA right away however, as soon as i completed the cycle, the HA returned.

Batch, I've been curious about the Vita D regimen seeing so many with success. Do you recommend the same schedule on top of the D2 or should I skip the D2? Also, do you recommennd taking it when I'm not in a cluster? My cycles ar usually 6-8 weeks with 6 months in between.

thanks

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

Ordered my vitamins. Just waiting for them to come in. Hopefully I will have some good news to report soon. I'm willing to give anything a try at this point.

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

Wonderful news and make sure you enjoy your friends and family at this time of the year without thinking about your CH at all.

Hey BMW,

Wonderful feedback for a Christmas Eve...  or any time of the year for that matter...

Have a Happy New Year!!!

V/R, Batch

That's great news, thanks for sharing. wishing all a very Merry Christmas