Hello all!

[Jilly from Philly]

I'm a first-timer here and would love any help I can get.  I'm 30, had CHs for 12 years (every since I got hit in the head with a golf club, but you should see the other guy  ) and they've been getting worse with time.

After several rounds of prednizone and a thyroid condition to thank for it, I found a neuro who told me "cluster head patients are easy to treat" ( :-?) and prescribed verapamil as needed at 240 mg.  It actually did the trick for the first year, and I was on and off of it as needed and thinking I'd found a miracle cure. 

I recently tried to get off  the verap after my killing season (usually October) and found I couldn't without recurring headaches.  Now scarily enough I am at the 240 mg and the headaches have come roaring back despite of it.  Because my neuro is crappy about getting back to me (seems to think I am overly-dramatic about how debilitating these things are and ) I've upped the dosage to 360 mg myself just to get some relief and precious sleep... BUT I feel like I am going down a VERY dangerous path though with this med, which led me here.

Sooooo....any general input on my situation would be greatly appreciated. 

Some other comments/questions/info about me:

1.  People on here refer to "busting" but I couldn't find what that really means...using psilocybin for treatment?

2.  Every doc I've talked to about using oxygen has dismissed it and my efforts at getting it myself have been fruitless...any suggestions? 

3.  I tried eating an eighth of mushies about a year and half ago and they didn't help, so I didn't try again.  Now I'm sitting on a quarter of mushrooms that's almost two years old...don't know if I could do anything with them if I wanted to.

4.  I've missed a lot of work because of these bastards...do a lot of CH sufferers have to go on disability?

5.  One of the most frustrating things about this condition is how little people around you understand it.  Can I get a what-what, or at least some advice on how to deal with that unfortunate little perk?   

6.  I'm really having a hard time sleeping.  Even when I'm not in pain, I just lay awake. 

PLEASE HELP!  I already suffer from depression, and these headaches get me so down.  I'm home on a Saturday night missing two Christmas parties because taking a shower to get ready triggered an attack. 

...but I gotta say, the wide range of emoticons to choose when posting on this forum is pretty rad...and it seems like there's some very interesting, talented and bright people here, so I hope to hear from some of you soon. 

[TakinitEZ]

Hey Jilly, Welcome to clusterbusters. I'm near Philly too in Bucks County. There are a ton of good questions in your post, so I'll hit what I can and leave the rest for others.

First of all, you need a new doc. Anyone who won't prescribe O2 for cluster isn't very knowledgeable about it, and one who says it's easy to treat is disillusioned. I go to the Jefferson Headache Center in Philly - they get it.

The good thing is that he started you on Verapamil, which is considered the best preventative for CH (in pill form). The dosage you're on is actually pretty low for CH prevention. Most here, including me, take a much higher dose (at least 480, up to 720). A word of caution though is that Verap does slow your heart rate and drops your blood pressure. If you have BP/heart issues, watch out for Verap.

Regarding disability, I think the answer is some. I'm on disability with chronic CH and vestibular issues. I certainly wouldn't recommend it unless you absolutely can't work.

-Chris

[Jsmacks]

Can I get a what-what, or at least some advice on how to deal with that unfortunate little perk?

WHAT WHAT!!!!!  ;D

Welcome to CB.com where we all get to share this monster. On the home page scroll down to "cluster files". It explains using psilocybin, LSA, LSD, etc as alternative treatments for CH.

Like Chris said, if your doctor won't bother with O2, find another. It definitely aborts headaches and won't jeopardize your heart in the process.

Was your eighth old? What were the effects? Did you bust while "in-cycle"?

Our sleeps patterns are all off. Our brains are "special".  :-[

Welcome!

-Jordan

[TakinitEZ]

OK, what the heck's a "WHAT-WHAT"? Man I feel old sometimes. -T

[Jsmacks]

LOL. It's slang for "I agree"... I think. Or at least I hope. 

[Hipshot]

Hi Jilly. welcome to the board of the damned!

I tried mushrooms several years ago just like you. The problem was that I dosed while on a daily fist full of meds including Verap. I got no relief. That's the bad news.

In April of this year I detoxed completely from ALL medications.

I tried the shrooms again after a failed ONS trial.

When done as directed, day one, day five...and completely detoxed the mushrooms worked like a miracle for me.

You must get high flow o2 and a nonrebreather mask. Click menu on the left of this page and go to oxygen page.

Oxygen, when used at 15LPM with the right mask is an absolute lifesaver for most of us.

[Dallas Denny]

Glad we got that cleared up....I was feelin old too T!!  Lol!

Jilly, there's a thread on clusterheadache.com with a printable "letter to employers and colleagues"        http://www.ouch-us.org/chgeneral/colleagueletter.htm        most of em still won't totally get it, but sadly, I'm afraid that's a reality of CH!!

I'll second the new doc for O2 or gettin my own welding O2 set up for sure!!  O2 completely changed the way CH affected my life!!  Lots of folks have been successfully using welding O2 for a long time without any ill side effects and it's real cheap compared to medical O2 and Trex!!

The age of the "alt meds" would make them questionable in my mind....

Welcome to the community Jilly!   Sending PF thoughts and wishes your way.

Dallas Denny

[Hipshot]

Speaking of o2.

The only difference in medical oxygen and welding oxygen is a sniff nest.

I get mine from West-Air. They supply both types. I inquired as to the difference.

They sniff the newly filled cylinders to smell for accetalyne (sp)

That is the only difference.

I get medical M tanks filled for under $10 clams and rent the tank for $40 bucks a year.

[TakinitEZ]

They also purge the med 02 tanks, not the welders (at least they're spota).

[Bejeeber]

Hi Jilly from Philly 

Glad to see that you're getting the good answers and advice from the grizzled CH vets here.  8-)

I would add that while you're seeking out a new doc, do everything you can to make sure he/she is a headache specialist. Your willfully ignorant bonehead dork of a neurologist is unfortunately very typical of non headache specialist neurologists.  Sounds like you got a good recommendation for the Jefferson center. One of the great things right there about this online forum.

Since as Hipshot noted, you'd need to detox from verap to effectively "bust" (mushrooms), the O2 would be a critical component in that strategy of course. Lotsa CH folk who have a difficult time getting an idiot doctor to prescribe O2 just do an end run and get the same O2 at a welding supply place without prescription. In any case you'd likely need to also order a good non rebreather mask and hi flow regulator online. [Edit: dang I now see that you guys posted more info about this before I was able to finish typing my diatribe ]

Sleeping.....some CH'ers report that melatonin actually prevents their night time hits, not to mention it's use as a sleeping aid. Starting dose for hit prevention is 9 mg before bed, with some people going all the way up to 18 mg - or even 25 mg (!) before getting relief. On the extremely anecdotal side, when it's just sleep that's the issue, I personally find that 5-HTP along with 3 mg melatonin knocks me out good. (5-HTP is a form of tryptophan, that stuff in turkey that causes you to involuntarily nap  8-))

[CHfather]

Jilly, you will get amazing help, support, and understanding here. I'm new, and it's my daughter who has the CH, but this place has changed both of our lives in a pretty short time.

Bejeeber said it so well: >>Your willfully ignorant bonehead dork of a neurologist is unfortunately very typical of non headache specialist neurologists<<  Here are two articles about high-flow O2 from serious medical journals that you can print out and show to him/her, if that would create a response of helpfulness:

Journal of the American Medical Association: http://jama.ama-assn.org/content/302/22/2451.full.pdf+html

Headache journal: http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE

I've also heard very good things about Jefferson -- but unless you're lucky, it can take a while before they (or any headache clinic) can get you in, so maybe your current doc is the best place to start.

You'll find many experiences similar to yours, including my daughter's: docs who just don't get it.  You'd think that in dealing with such a painful condition they'd care, maybe read a little, maybe extend themselves a little, but most don't.  So you need to educate them and fight for yourself.  It took weeks for my daughter and I to get through the seemingly-simple process of getting a proper O2 prescription (high flow, big tanks, non-rebreather mask) and then getting the O2 supplier to actually supply what was needed. (As has been noted here, once you get the tanks, you can buy the rest of what you need online, for example at eBay.)

Slamming RedBull has helped my kid when she catches an attack early (though it doesn't help everyone), and so far the oxygen is like a miracle. 

She's busting with RC seeds (you should also read the "ClusterBuster files" at the "Forum Jump" at the lower right corner of this page), which also is working quite wonderfully.  Because all the meds they gave her were so awful, she was just enduring her two-and-three-hour ordeals every night . . . the good part of that was that she didn't have to detox for the required five days before starting.  Just saying . . . I have seen first-hand, night after night, how terrible a CH attack is, and I think detoxing can be worth it, despite the horror.

Also, here's a document from a Yale Medical School professor about the effectiveness of busting with seeds (he's talking about HBWR seeds, but the mechanism is the same for RC seeds, and they seem to be simpler to use): http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

ASK your questions.  You'll get answers.  The people here are, as I keep saying, amazing.

Jerry

[CHfather]

Jilly, I was looking up headache specialists in Philly when I accidentally posted the above. Here's a place that lists three names: http://www.healthcentral.com/migraine/headache-specialists/pennsylvania.html   

Might be a place to start.  It says "Migraine and Headache Specialists," so I'd call to find out which have CH experience, and maybe even which will prescribe oxygen.

Jerry

[CHfather]

BTW, my daughter is just about the same age you are.  My heart goes out to you.

Jerry

[kaboom]

So sorry to hear your hurting, Jilly.

O2 is a very fast and affective abort for me.  My doctors would prescribe, but insurance has never covered the cost.  I purchased  my own tanks and regulators and just exchange the tanks when I'm out of 02.  My M tank is around $20 and the E's are $10 -12 per exchange.  I recently moved to a small town and my doctor actually told me that if there were any issues getting a medical supplier to give me O2, to just go to a welding supply store.

The pain of CH certainly goes way beyond physical.   Many of us here also experience difficulty sleeping and depression.  It sucks.  But, the good news is that you will find awesome support here on Clusterbusters.  Welcome!

[Jilly from Philly]

WOW!  I can't believe how much information and support I got from one posting...truly amazing and inspiring (and now hip to the latest and coolest slang...WHAT WHAT! )

Stay tuned for more questions in response to all your postings.  It's late and I'm backed up with work, but I'm looking forward to re-reading and responding to all the feedback, suggestions, explanations...Thanks! :-*

[Jilly from Philly]

By the way, can you get emails when people respond to your posts or do you just come back and check the site?  Thanks again...

[Hipshot]

Sooooo... where do you live Jilly? 8-)

[alleyoop]

By the way, can you get emails when people respond to your posts or do you just come back and check the site?

Scroll to the top of this page.  You will see a bunch of tabs.  Click on the "User CP" (control panel) tab.

Click on the "Profile" tab on the left.

Click on "Options" under that.

This should bring up your "Edit my Profile > Options" page. (You may have to sign in again with your password.)

Under "Post and Board Notifications:" look for "Notify me of new Notifications by eMail."  Click on the drop-down menu and select "Yes" to have all new posts sent to you by email. The emails will contain a clickable link to take you to the new post.

[Hipshot]

Nice new pic of you alleyoop :

[dereksgirl]

Alleyoop,

Do you still have to click the "Get Notification" button on the thread page to get the email response?

Thanks - I am learning this too :

[Hipshot]

Where is Jilly?

[alleyoop]

Dereksgirl, first scroll down to bottom of this page and check the "Notify of replies" box.

Then to get notification of posts by email, do the following:

Scroll to the top of this page and click on the "User CP" tab. Then on the User CP page, click on the "Profile" tab, and then click on "Options".  Scroll down to "Post and Board Notifications".  If the check box is checked, uncheck it.  Under "Notify me of new notifications by email?", select "yes."  Click "Save Changes."

I hope this answers your question.

Bob

[CHfather]

Where is Jilly?

In Philly, silly.

(PF, from what I last heard.)

[Hipshot]

Touché(with a little thang over the e ) CHFather

Dan