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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New to CHs, Glad I found this site
        
(Message started by: sevlow on Nov 4^th, 2004, 10:31pm)

Title: New to CHs, Glad I found this site
Post by sevlow on Nov 4^th, 2004, 10:31pm

Hey everyone,

I'm Chris from Charlotte, NC. I'm a 35 year old, and got hit with my first CH on 09/26. Thought it was just a headache, but sure have learned otherwise since. I'm a happy, healthy ordinary average guy (no smoking, drinking, stress etc to trigger them).

On 10/06 finally made an appointment and saw a Physician's Asst, who listened to everything I had to say, and immediately diagnosed as CH. Put me on a 7 day course of Prednisone and they quickly stopped, so I thought I was "cured".

On 10/18 after five more days of constant attacks I went back and saw a "real" doctor, who confirmed the initial diagnosis and put me on Methylprednisolone, which was only marginally effective at keeping them away, so he switched me to Verapamil on 10/29, which did nothing at all for me.

On 11/02 I got in to see a neurologist, who again confirmed CH, but said that there are two points to mine that could be the deal breaker. 1) My CHs only occur during the day and go away before I go to bed and 2) they cycle as 9am-3or4pm KIP 1-3, 3or4pm-5or6pm ramp up to KIP 7-9 and hold there until 9-10pm before just disappearing.

I'm scheduled for an MRI on 11/10 to make sure the wiring up there is all in place and that there isn't something there that shouldn't be and go back to the Neuro on 11/16 to discuss options. I am blessed that all three people I have seen so far pointed me right at CH, and now I have found this site.

Luckily, they haven't affected me at work, except for the day they ramped up early and my boss saw it and sent me home. (I have the best boss in the world!!) I'm also helping my wife understand that I don't need to be in a dark quiet place and that laying down and sleeping is NOT an option during an attack. I do my best to continue spending time with my 16 month old daughter, because I don't want her to become scared of "daddy" because of these blasted CHs. For me the best medicine seems to be to keep doing what I am doing during the attack, but just slow it down so I dont' hurt myself.

I guess my first question is, has anyone heard of them hitting during the day before, and lasting for 12-13 hours like mine have been? That has me worried that this MRI is going to show something even worse.

Love what little I have seen of the site so far, and plan to soak it all in as things go along.

Thanks ;;D

Title: Re: New to CHs, Glad I found this site
Post by thebbz on Nov 4^th, 2004, 11:16pm

Hello,
Your off to a good start. Study all you can good luck at the neuro. Time will tell.. Sorry your in battle.
BB

Title: Re: New to CHs, Glad I found this site
Post by angel-ache on Nov 5^th, 2004, 4:23pm

Hello new clusterhead,

Didn't get your name. I too only suffer during the day. CH's are not particular to really any time. They seem to be pretty darn consistant in timing only with the sufferer who experiences them. No-one really suffers at the same times. More the less, CH's happen more at rest time than during the active day.

I sleep well at night, but wake up in the mornings around 6-7am with an ache. Then every other evening for some time. I get hit pretty bad mid cycle. Horrific kip-9's give or take. ER trips. (I am at the meanest age 27) I have discussed on this site about the dull painful ache after the mean headaches. We all feel the wounds of the battle that just ravaged the side of our head. It could be a real long lasting headache, all day. Only to progress in the evening or whenever to another full blown headache.

My MRI didn't show me much. Just my brain. Still got that. It will rule out that something foreign isn't provoking them. Did you bump your head badly at some time?

Ask away, we are here for you,

Angela

Title: Re: New to CHs, Glad I found this site
Post by 3dogmom on Nov 7^th, 2004, 9:33am

Hi,

I'm new to this too. I also get them only during the day, and they last basically all day. Sometimes the pounding lightens up a bit. I visited the PCP 10 days ago, was put on a calcium-channel blocker and indocin. It has helped a lot, but I still feel it there, and I can set my watch (every 8 hours) by the indocin's effectiveness.
Oddly, I put my head down at night and sleep fine. It starts the instant I awake in the a.m.
Have an MRI scheduled for next week, have been waiting for it for four weeks now. Good thing I'm not bleeding to death...even though sometimes I feel like I must be. I've had this pain since August, but it wasn't as bad then.
Good luck. Keep after those docs and get some help. I guess it takes a lot of attempts to find the right combo of stuff.
Sue

Title: Re: New to CHs, Glad I found this site
Post by sevlow on Nov 7^th, 2004, 10:27am

John/Angela/Sue,

Thanks for the welcome and support. While I hope that it's not CHs that I have, considering some of the alternatives that my MRI could come up with on Wednesday, I guess that I hope I have to learn to live with them. I will take CHs over something funky on the MRI any time.

I'm lucky I guess in that I sleep like a baby, and also have a few hours PF each morning. (I get up at 5:00 and the shadows don't come out to play until 9:00-9:30.) That gives me time to get in my morning run, take a shower and get Talyn (my daughter) ready and dropped off at daycare.

Since I didn't get my first CH until 09/26 I don't know if I'm chronic or periodic yet, but I would take periodic over chronic if given the choice. I have hit KIP 9 a few times, but only on my second trip to the doctor was it driven by a CH in progress. Hot showers can knock the worst ones down so far.

Nope, no bumps to the head, and I don't drink, and despite living in tobacco country I'm very rarely ever around smoke. I also live an amazingly stress free life, because I have the best job I could ask for, and my daughter has been a true blessing, though I expect plenty of stress when I start having to beat off the boys in a few years.

I was on Verapamil (Cal Chan Blkr) for the three days before seeing the Neuro and had possibly the three worst of my headaches yet, so he told me to stop them. I am very much anti-drugs of any type, so while I will listen to the Docs advice to be sure, I am going to try every other option I can get my hands on to avoid drugs. When the worst ones hit in the evenings, I have found the best thing to do is to just keep doing what I'm doing, but slower, so that I can focus some energy on tuning out/down the pain. (Actually moved a bookcase one night despite my wife's protests, b/c it just felt better to not sit and be in pain.

Sue, sorry to hear it took you so long to get in for an MRI. Only took me a week, but I'm lucky to be in an area with at least six MRI machines nearby, and I told them I would drive any distance to take the first appointment. My Neuro has an office 10 minutes from my house, but I drove over an hour to a satellite office, because I could get the first appointment two weeks earlier, and now my follow-up is on the same date as the original appointment after the MRI.

I know, I know, I ramble when I write, but I just wanted to say thanks for the support, and being there for me. If there is anything I can do for you or anyone else out there please let me know.

Take care,

Chris

Title: Re: New to CHs, Glad I found this site
Post by Bob_Johnson on Nov 7^th, 2004, 11:36am

Chris, one of the most difficult aspects of cluster is developing the patience needed to find the treatment which is effective for you. The Verap dose may have to be adjusted several times and it takes days to weeks to become fully effective. You may have to combine it with other meds, etc.

The pred. treatment aborts a cycle quickly--but they should have put you on a preventive (Verap, etc) at the same time so that it could have time to start working before the pred taper stopped.

There is so much good material to guide your understanding of cluster but it's hard to integrate it when it comes in bits and pieces--one of the disadvantages of a group like this . I'd strongly suggest you get one of these books. The more expensive one is worth the extra bucks and it's written for doc--so you can share what you find with your doc.
---
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. 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: New to CHs, Glad I found this site
Post by sevlow on Nov 8^th, 2004, 1:56pm

Bob,

Thanks for the information on the two books. I will take a look at them after I get finished with my MRI on Wednesday morning. Want to make sure it comes back clean before looking into other things.

I will take all the advice I can get from here and anywhere else. I take it all in, but then definitely do my own research as well, because I know that what works for one person may not work for the next. [smiley=twocents.gif]

Got your e-mail as well. Was stunned to see that you actually live in a place smaller than where I grew up. That takes some work, since my hometown was only 600 people. (Obviously, Charlotte is not my hometown!)

Title: Re: New to CHs, Glad I found this site
Post by thebbz on Nov 8^th, 2004, 7:57pm

Oh ya!!
Rappaport has a good one to read as well ..when ya run out of readin let me know .. lots of internet info as well. til later
BB ;;D