Hello! My name's John & I've been lurking and reading this board off and on for a few years now, but I never got involved-I've never had anything to contribute(not that I do now LOL).

Anyhow, here's my story-
I've had to deal with CH's for the last 7 years. When I first got them, I had the usual-repeated trips to the dr, an MRI, even a referral to a 'pain dr'(1.who was worthless-prescribed Vicodin and percoset(sp)2.was arrested a year later.) Then, with the help of my boss, I hooked up with a homeopathic dr. He gave me a couple bottles of drops(Pleo UT) and I have been able to go the duration without dr visits,no bad headaches(nothing over a 5), and no prescriptions!

Until now. They came back with a vengeance. About a month and a half ago. I made the usual trip to the homeopath for what worked in the past, and a week later-the drops ran out, and the headaches persisted. Worse than the first time. I had 3 10's in a row-always at night(1 am) that would last til 2:30-6:00 before subsiding to a lower level so I could go back to sleep. I took so much Excedrin TH that it gave me acid reflux, so I went to my family doc.

1st try-Imatrix(9) and prednisone. 1 week later-CH day and night and no imatrix(I took no more than 2 in 24hrs, but they hit hard and often that week.)
2nd try-blood pressure pills and carbamazine. I never started the anti siezure meds because I went to a neurologist the next day.
3rd try-Dexamethasone(4 days then I had to stop due to acid reflux) & Trixamet. Which works funny for me.
1st pill I took gave me 6 PFDAN. The 2nd one did the same. But the 3rd pill got me through the night. The 4th gave me 2 days, and I just took the 5th.
Luckily, my insurance does cover it($50 copay), but they only allow 1 script(9pills) per 30 days.

I try to take as few meds as possible, but I'm not always given that option. When I get a little one, I tighten my hat a few sizes and cut the circulation off up top. It works most times, but it can't be healthy to do repeatedly and for long periods.

I also went back to the homeopath who told me my adrenaline & testosterone levels were out of whack.(I don't know how everyone feels about the 'herbal doc's', but like many-I will do anything to be rid of CH)So I'm taking some more stuff that he gave me as well as the Trixamet and BP pills(I don't think those are helping with the CH, but it is keeping my BP under control-but I'm only 30.... ::) )


...sorry for such a long winded post.  :D

Hi Rivkid,
Its nice to finally meet you! I did wonder who it was staring in the window all the time  ;)
There are studies on testosterone and CH ongoing right now so you saying your levels are out of whack is no big surprise. There are many posts on the subject here, it might help you to read through some of them.

Trixamet is imitrex and naproxen combined. I believe it's only available in pill form? You need to be using the injections really as imitrex in any other form is considered too slow acting for CH. You might also want to ask your doctor about Zomig nasal sprays. They have a longer half life than the imitrex.
Also, if you're only allowed nine "units" a month you'll get more mileage from the injections (ask for vials) as you can use the imitrex tip (see menu on left). You can effectively triple the amount of doses that way.

Are the blood pressure tabs verapamil? If so, what dose are you on and did you have an ECG before taking them?

CH is a vaso dilating condition which means the only effective way to stop the pain is with vaso constrictors. Triptans such as Imitrex and Zomig ARE vaso constrictors and so is high flow oxygen. I would HIGHLY recommend that as an abortive. I can abort a full blown attack in 5-7 minutes using o2 at 15LPM with a non rebreather mask - you can't beat those sort of results!

Strong coffee and energy drinks such as red bull are also really effective as caffeine is a vaso constrictor too. I always have a can of that muck with me! I hate the taste but love the effect!

I don't want to overload you with too much on my first post to you so I'll stop now - but we'll help all we can!
Looking forward to hearing more from you
Helen

Yes, the Trixamet is a pill that comes in qty of 9(they're sealed so I don't think they come in higher counts). My ins won't allow more than 1 fill because they label it as an addictive substance(maybe cuz it works?lol).
I saw the imitrex tip-but I hate needles(I'm a wimp!), but I have yet to try the O2 method-I plan on asking my doc when I go back for my follow up.

The BP pills are Cardizem cd. 240mg/day.
I think she put me on them because my bp was 145/70-most likely due to an attack at the time. After a week it was down to 125/70, so it worked, but I'm not sure how its affecting the CH.

I've used Monster Energy in the past...I used to drink it on a regular basis.  :D :D