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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Introducing myself after reading, reading, reading
        
(Message started by: BK on Nov 28^th, 2005, 7:50pm)

Title: Introducing myself after reading, reading, reading
Post by BK on Nov 28^th, 2005, 7:50pm

Hello all,

I’ve been reading all the posts for a while but have resisted introducing myself. But since I am tempted to respond to some posts I thought it only fair that others should know from where I speak.

Here is as short a summary as I can make it. Officially diagnosed with CH Sept. this year. But I’m now certain upon reflection that I have had isolated ones for many years back. Just thought they were variants of migraines (10 years plus on those), which have been chronic for about a year. My migraine pain when not aborted would last 3 days and be an 8 on the scale. Often thought of a trip to the ER but resisted. Some of the headaches that I had previously that I now know as cluster would be easier to tolerate than the migraine in that they would be a 5 to 6 and would last 6 to 8 hours. But it all changed in Sept. when I had 4 days non-stop of torture. Truly was suicidal. Had it all planned and was only stopped by my very supportive and understanding spouse and a trip to the hospital. The rural hospital did nothing upon admission except IV magnesium (didn’t help) but after a long wait I was visited by the neuro who has since and reluctantly assumed my care. Reluctantly because he feels I will be difficult to treat and will be chronic. Wants me to see a specialist, which I will do when able. Started on Verapamil and have worked up to 480 mg but probably can’t go any higher due to BP. Verapamil does cut the intensity and duration somewhat but not frequency. Frequency is daily and often multiple times daily with only 3 days since Sept being PF.

Abortives: Imitrex shots, which I am well acquainted with as well as many other triptans, works but only to rebound me to a significant degree each and every time. It’s not worth it. O2 never has helped. I tried it repeatedly. And YES, I know how to use it. Like I said, I have been reading the posts for a while and know the appropriate set-up and how to use it. Ice packs often will make the pain somewhat tolerable if they don’t get above a 7. Migranal spray worked once and then was ineffective for 5 subsequent times. Cafergot worked only to make me extremely sick and weak and then I got a huge rebound for 6 hours on the other side. Neuro doesn’t want to use Zyprexa. So I seem to be running out of options on the abortives.

By the way, I do have CH on both sides. Usually have them on the right, which are the severe ones, but sometimes they hop over to the left the same day. Only had a few bad ones on the left. Symptoms are typical: droopy watery eye, nasal stuffiness then continuous dripping, someone doing a tug of war with my eyeball while driving a hot poker through my forehead right above my eye, anxious, can’t sit still, want to be left alone. Pacing outside in the cold air when I feel up to it is my activity of choice when one occurs.

I’m going to add Topamax to see if I can get better control. Also trying all kinds of diet modifications. Never touch alcohol because it’s a migraine trigger.

Today was one of those really SPECIAL days. Migraine and CH at the same time. Oh well…..If I weren’t an optimistic and happy natured person it would be worse to handle.

Title: Re: Introducing myself after reading, reading, rea
Post by Kris_in_SJ on Nov 28^th, 2005, 8:03pm

Hi BK,

Welcome to the zoo - and greatest board anywhere.

I'm sorry you're suffering so much, but am very confused by your symptoms. I've never heard of a cluster that lasted 6 hours! I would have jumped in Lake Michigan by hour 4!

Regardless .... head pain, whether Migraine or Cluster, is horrible. Keep posting. Sounds like you've tried most of the usual cluster meds. Hope the Topomax helps - Lithium is also helpful to some.

Hugs and PF Wishes,

Kris

Title: Re: Introducing myself after reading, reading, rea
Post by lionsound on Nov 28^th, 2005, 9:11pm

Welcome BK :)

Sorry you're in so much pain. I get migraines clusters and icepicks too ..I understand the multiple HA thing.

It seems that it is time for you to see a headache specialist to help you sort everything out. YOU ARE WORTH IT!

Why won't your neuro let you try zyprexa?

Be well and PF!
-lionsound

Title: Re: Introducing myself after reading, reading, rea
Post by Kate in Oz on Nov 29^th, 2005, 8:24pm

Hi Bk,

Welcome. Sorry to hear your having such a rotten time but at least you found us ;;D

Hope you get a break real soon,

Kate

P.S. I tried topomax and it made my headaches so much worse and just felt generally shit - but hey some people here use it and find it works well so ??? Good luck.

Title: Re: Introducing myself after reading, reading, rea
Post by BarbaraD on Nov 30^th, 2005, 11:31am

I'm one of the ones that topamax work well for.... hope you get the same results I did. It's been my "miracle" drug.

I've had headaches that I thought lasted for hours, but it was just back to back ones. There was always a few minutes of break in between -- guess that's why they call them clusters.. Maybe that's what's happening to you.

Hope you get some PF time soon.

Hugs BD

Title: Re: Introducing myself after reading, reading, rea
Post by Bob_Johnson on Nov 30^th, 2005, 2:32pm

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf
----------------
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: Introducing myself after reading, reading, rea
Post by marlinsfan on Nov 30^th, 2005, 4:59pm

Hey BK, welcome. If you do get on topomax, be on the lookout for some of the side effects. For me I had to stop after a few days cause it made me very dopey. I called it dopeymax.... I couldn't find the right words when I tried to explain something, I forgot things, I even got lost while driving and mind you I've lived in the same neighborhood for years. Plus, my headaches got worse.

Have you tried melatonin at night? I found great relief with it. Take 9 mg 30 mins before bedtime and cut the intensity and number of hits during the night.

PF wishes.
Jose

Title: Re: Introducing myself after reading, reading, rea
Post by Beastfodder on Nov 30^th, 2005, 8:51pm

BK - if you've been lurking in the background it won't come as any suprise that there's loads of people who can empathise with you.

Good luck with the meds.

I too was more than a little suprised on my first visit here (pleasantly of course) and still am.

It wasn't a suprise reading about people who chose not to do some of the meds, given they seemed a bit hit and miss with significant side effects and risks for me at least.

What was a jaw dropping suprise was the effort going into clusterbusters as an alternative therapy - which now translates for me into a brilliant abortive.

Title: Re: Introducing myself after reading, reading, rea
Post by thebbz on Nov 30^th, 2005, 9:40pm

Glad you decided to jump in. Now row!
And don't forget to breathe.Reluctant neuro...replacement? ;)
jb

Title: Re: Introducing myself after reading, reading, rea
Post by cazman on Dec 5^th, 2005, 11:36pm

i went 4.5 hours bouncing between 7 and 9's after taking two amitripline that my doc gave me to help me sleep it was the worst ever nothing has ever and hope never will be that bad. and yes at the 3 hour point dying was looking real good cause at that moment i thought i permently stuck in hit mode
2 hour one a real rare its usually 1 hour tops thankfully its been 3 months since the last real hit

Title: Re: Introducing myself after reading, reading, rea
Post by burnt-toast on Dec 9^th, 2005, 8:39am

Welcome abord.

Hope you find some relief soon. You're in good company - folks here know what you are going through and are always ready to privide support.

Tom