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        Cluster Headache Help and Support >> Cluster Headache Specific >> First Post ... and some questions
        
(Message started by: heathery on Oct 10^th, 2007, 11:41pm)

Title: First Post ... and some questions
Post by heathery on Oct 10^th, 2007, 11:41pm

Hello! This is obviously by my title my first post -- maybe ever on a message board. Please let me know if I've made any faux pas.

My husband Andy has been in a cycle since the end of April. He used to get three-month cycles like clockwork every 18 months, but there was a five-year break between his last and this one. It's getting harder now as the months drag on, imitrex doesn't seem to work as fast, and to top things off, he's now got a fever of 103 and the attacks are even harder (we think it's the flu and will call the dr. tomorrow).

So our questions are:

1. Are we missing any potential drugs/methods?

We were able to stock up on Imitrex between cycles (that had always been a problem in the past) and at first this, combined with verapimil, melatonin and occasional bursts of steroids, seemed to keep the strength and duration down, although not the frequency. Six months later, he's taking 700 mg of Verapimil, 600 mg of lithium, 6 mg melatonin, magnesium and vitamins and the headaches are worse and lasting longer. He hasn't tried Oxygen (used once before and wasn't successful, but I don't think he used the right mask) or the cluster busters solution. I've read a lot about things that work for some and not others (thank you!) but we're kind of at a loss.

2. Can anyone point me to a site the recommends doctors who treat cluster headaches?

If anyone has recommendations, I'd love to know. We live in the DC Metro area, but travel to Pittsburgh to see his current doctor, who's great but.. pretty far away.

3. Anyone have experience with high fevers during a cycle?

He has aches, pains, exhaustion and chills, and had 3 headaches today already -- once was a two-shotter, as we call them. It's going to be a rough night and he's pretty upset.

4. And fourth, just a thanks. We've both turned to this site many times over the past few months. With cycles five years apart, it's like we have to re-learn everything every five years. I'm so thankful that you are here and talking and educating and ....well, THANKS!

Title: Re: First Post ... and some questions
Post by schaan on Oct 11^th, 2007, 12:51am

i am a little weary offering any advice as i just found this place myself.

one of the worse parts about getting hot (fever) is that i know its gonna be one of the really really really bad ones. my friend even in the winter has been the floor vent at the floor of my bed. i turn the air up and lat there untill i have grill marks from the slats ( now i use 2 rectangle sponges on either side of my head ) damping thme with water helps alot too. breathing the FORCED cold air helps alot some of the time,

also anytime im sick all bets are off when it comes to cessastion of an attack.

even a mild cold will have me tip toeing around signs and symptoms.

good luck and he dosent mean it !!!!!! at least thats what i find myself saying all the time.

Title: Re: First Post ... and some questions
Post by MJ on Oct 11^th, 2007, 1:10am

Hi heathery / Andy

Welcome home.

Someone will be along soon with some doctor and cluster med links.

Sounds like your meds are doing not much of what you would like them to do.
Its possible they may be amplifying the hits and prolonging the cycle.

High fevers, not uncommon to break into a sweat while being hit . I suspect your right about the flu bug, what a nasty combination.

If you persue the buster methods RCseeds dont try it with a flu bug. Trust me on this one its like the flu to the 10th power. Any other time fine. For me its the only medication that ever worked beyond high dose prednisone.

Oxygen works if done properly for a very high percentage of CHers. I am one who is in the unfortunate minority..
I cant advise you much on meds as all the other meds you mention and then some help me not at all.

There are additional links on this site as well..

Sorry for the negatives but you post well and thought I would welcome you in.

Title: Re: First Post ... and some questions
Post by clusterwife on Oct 11^th, 2007, 9:06pm

Great first post! Someone will be along to give you the info you need. Welcome! Leah.

Title: Re: First Post ... and some questions
Post by DennisM1045 on Oct 12^th, 2007, 1:23pm

Hi Heather,

Sorry I didn't get to this earlier. That was a great first post!

Your husband really needs to try O2 again. Imitrex can become ineffective over time with too much use. O2 works great for me and I can get hit up to 3 times a day. Using O2 to abort almost all of my hits, I'm only using 1 Imitrex shot a week on average.

You need a non-rebreather mask and a regulator that will go up to 15lpm. There is a really good guide here: http://www.ouch-us.org/medications/oxygen/o2links.htm. In particular the "Supplemental Guide to Using O2" is a tremendous resource. I wasn't using it right till I read this guide. There is other info that will be useful in helping you get O2 perscribed from your Dr.

Info on the latest on meds can be found here: http://www.plainboard.com/ch/chtherapy.pdf but it sounds to me like you are all over the meds side of things. I know of some that are on 1200mg of Lithium. When was the last time he did a review of his meds with the Neurologist? It can't hurt to re-read though this document and then discuss it with his Dr. There are lots of options out there.

Good luck. I hope you both get a break soon. You are not alone in this fight!

-Dennis-

Title: Re: First Post ... and some questions
Post by Jill on Oct 12^th, 2007, 1:31pm

Hi there....

Welcome to the board, I am sure that you will find lots of helpful information here.

I am also from Maryland, about two hours from the DC area though right now I am in Sweden. Anyways, I could not find a good doctor for cluster headaches in that area. I now go to Jefferson Headache Clinic in Philadelphia and they have been great. The neurologist that I see there has been the first one that has promised not to give up on me.

They might have a little bit of a wait and their initial appointment is like four or five hours long but they are great and would be closer than Pittsburgh. Just a thought!

Also, I am chronic so this might be different for episodics but whenever I get any kind of cold or fever, my clusters increase in both intensity and frequency.

I hope that you guys do get a break soon. And thanks for being a great supporter, you guys keep us sufferers going!

Jill

Title: Re: First Post ... and some questions
Post by Bob_Johnson on Oct 12^th, 2007, 2:21pm

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: First Post ... and some questions
Post by Bob P on Oct 12^th, 2007, 2:25pm

Doctors

http://www.ouch-us.org/chgeneral/doctors.htm

Title: Re: First Post ... and some questions
Post by Karla on Oct 12^th, 2007, 3:18pm

I would recomend that you try going up to 900mg or 1200mg of lithium and up to possibly 960 mg of verapamil. Other than that have you tried topamax or neurontin or zyprexa or elavil? These drugs have offered some sucess to some individuals. I would highly recomend trying the oxygen again. making sure you follow the guidlines of the previous posters links. Good luck.

Title: Re: First Post ... and some questions
Post by Charlie on Oct 12^th, 2007, 10:51pm

Welcome kids.

These people know what they are talking about and I hope you find something that works for you.

This thing worked for me and it's been slightly updated thanks to some input a few months ago. Give it a try.

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: First Post ... and some questions
Post by schaan on Oct 15^th, 2007, 12:27am

exactly charlie !!

this is virtualy identicle to what i learned in the bio feedback therapy i had recently spoke of.

i think most anyone can do it, try and see.

Title: Re: First Post ... and some questions
Post by cash5542 on Oct 15^th, 2007, 9:23pm

Hi! We live in OC , Maryland. My daughter has CH and was in college in Lancaster. I loved her doctors there but eventually they sent her to Jefferson in Philadelphia. I tried to get into this practice earlier and had a hard time but when her doctor referred her it went easier. I woud strongly suggest a doctor's referral. The visit is quite intense, taking at least 3 to 4 hours and a required $400 psychological. Like Jill said,these doctors won't give up and are very aggressive and ready to try different combinations. Someone else just posted from Northern Virginia looking for a doctor but I didn't see any answers. Good luck!

Charlotte

Title: Re: First Post ... and some questions
Post by BarbaraD on Oct 18^th, 2007, 8:35am

In the meantime.... get some Red Bull Energy Drink and chug-a-lug a can at the first sign of a hit. This will sometimes abort it at the onset if you get to it soon enough.

The fever and sweats are common - keep ice packs in freezer (I cup of alcohol to 3 cup of water in a baggie - then double bag the baggie - freeze -- it will remain cushy - cheaper than buying ice bags) - Frozen peas work great also and can be refrozen. I have been known to sit outside in 17 degree weather in my nightgown to cool off during a hit - so it IS a common thing...

Melatonin can be upped if it's not working to get thru the REM sleep -- I've used up to 20mg at times.

Might ask the doc about ergotomine instead of imitrex (don't take BOTH - or within 24 hours of each other). I've found the ergotomine works longer than the trex.

O2 used correctly (15 liters with non-rebreather mask) usually helps most CHers (not all, but most). Strong coffee for shadows or as a first shot (I do it with the O2).

Pred tapers work to get a prevent working, but are only good for that.

Try Charlie's technique -- it's worked for a LOT of people.

Good luck and we all wish you some PF time soon.

Hugs BD

Title: Re: First Post ... and some questions
Post by birdman on Oct 18^th, 2007, 10:53am

He may need to detox! It happened to me and I felt much better actually. In order to go the buster route, he would have to detox anyway. I have had success with RC seeds and am currently dealing with it. Feel free to PM me with any questions.
Also, Red bull, red bull, red bull. Or any energy drink with caffeine and taurine.
You are a great supporter, he is very lucky. I say this because I too have a great support team.
Tim

Title: Re: First Post ... and some questions
Post by thebbz on Oct 18^th, 2007, 1:47pm

:)
With the duration of this episode being quite long your sufferer is by now really worn out psysically. Fever and other nasty crap like flu and cold are really easy to get.
Look into 02 again. Properly administered this is a lifesaver. Sometimes nothing works, it happens. Dont be discouraged, when a long episode is in the works, anyone would get worn out. Hang in there it will end.
check out clusterbusters.com
all the best
thebbz

Title: WelRe: First Post ... and some questions
Post by mdorr on Oct 20^th, 2007, 7:46am

Welcome to the site. I am sorry I didn't see this earlier too.

If you do not mind the drive, you may want to consider Jeffersn Headache Clinic in Philly.

http://www.jefferson.edu/headache/home/index.cfm

I think it is a 2.5 hour drive for you depending on the beltway and your proximity to it. It is also a pretty drive this time of year. You definately want him to get the 02, but they may suggest a few combinations that could halt his cycles when they start.

Hope that helps