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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Newbie CH
        
(Message started by: lilbitintn on Dec 8^th, 2004, 8:28am)

Title: Newbie CH
Post by lilbitintn on Dec 8^th, 2004, 8:28am

30 yr old female just started having these demons 6weeks ago ... I will never make light of a headache again ....I have been to 4 dr's, 3 emergency room trips ...chiropractor....laser therapy ...magnetic therapy....and still I wake up every day with this headache .... I started off on propranolol , then imitrex , now on Topomox 25mg twice day , celebrex , and migranal ....and Guess what I woke up this morning and I still have the damn headaches ....Will this ever end??? I currently go to a neurologist who has me on this regiment of drugs , ive had cat, mra , mri , blood work you name ive had it .....and still the headaches.... Does anyone have any suggestions....My life has went to hell in a short period of time ...lost my job because of them ...my kids are starting to hate me ...I hate myself lol ....HELP :)

Title: Re: Newbie CH
Post by Ruth on Dec 8^th, 2004, 8:41am

Hi,
Does the nuero, say that they are cluster headaches?
Are you just having one a day or is it an all day thing?

Ruth

Title: Re: Newbie CH
Post by Bob_Johnson on Dec 8^th, 2004, 9:13am

First of all, except for the Top., none of the meds you are using as effective for Cluster.

So, raises the question: has the doc diagnosed you as having Clusters or some other headache type?

If he has Dx Clusters, then the drug selection raises, for me, a question about this doc's knowledge/experience in treating Cluster.

Look at the "medication" button on left and you will see what most of the folks here use and their reports of effectiveness.

Take a look at this site to get your education moving:

WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
-----
Suggest either title:

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: Newbie CH
Post by don on Dec 8^th, 2004, 9:20am

Quote:

Will this ever end???

Maybe not but with proper treatment they can be managed well.

Sounds like you've already experianced the world of quack treatments. Magnet, lasers, the ever loving chiro. Now that you've gotten paste that garbage you can begin legitimate treatment for Cluster Headaches.

Read up on all the effective preventatives for clusters. Verapamil is one taken at a proper dosage.

Prednisone tapers help many while taking the verapamil or other preventative.

There are many abortives. I personally have foung 2-3 mg of injectable imitrex to be the most effective for me. Many people find oxygen the most effective abortive.

Melatonin aids with the nighttime horrors by affording you a better quality of sleep.

Then there is all of this to manage the pain..........

http://www.clusterheadaches.org/resources/non_script_treat.htm

Title: Re: Newbie CH
Post by lilbitintn on Dec 8^th, 2004, 1:55pm

Its a pretty much all day headache it lightens up a lil when i take the topomax but not much ...i take naps frequently throughout the day .... Getup eat take meds ...take a nap ...get up eat ....take a nap ...get up ....toodle around a lil .....cook dinner ...eat ....bath ....bed time ........i talked to the neurologist today and told him i still had headaches6-8 day.... he informed me sometimes it takes up to 3-4 weeks for topomax to work .....I suggested oxygen therapy and he doesnt want to go that route ....In the meantime i guess ill continue waking up and wishing this thing would go away .... GOD BLESS YOU ALL !!! :)

Title: Re: Newbie CH
Post by unsolved1 on Dec 8^th, 2004, 2:13pm

on 12/08/04 at 13:55:01, lilbitintn wrote:

Its a pretty much all day headache

Not clusters. Be glad. Be very glad ;)

Best wishes getting your headaches under control

Unsolved

Title: Re: Newbie CH
Post by lilbitintn on Dec 8^th, 2004, 2:31pm

The neurologists said i have the symptons of migraines and cluster headaches ....calls them migraine clusters....I dont really know what to believe to be honest .....I do know i have 6-8 episodes a day of headasches that make me want to ram my head through the wall , feels like my heads on fire in the back at the base of my neck , pain shoots through my right eye, feels like my right side of my face is numb ....someitmes the pain does get so intense i feel sick to my stomach but not often ....sound and light doesnt effect me .....i originally went to the dr because i thought my bp was acting up i could feel it in my head ....wasnt it was these headaches and 6weeks later my friends still here...

Title: Re: Newbie CH
Post by Gator on Dec 8^th, 2004, 3:01pm

on 12/08/04 at 14:13:52, unsolved1 wrote:

Not clusters. Be glad. Be very glad ;)

Best wishes getting your headaches under control

Unsolved

Quote:

Posted by: lilbitintn Posted on: Today at 13:31:24
The neurologists said i have the symptons of migraines and cluster headaches ....calls them migraine clusters....I dont really know what to believe to be honest .....I do know i have 6-8 episodes a day of headasches that make me want to ram my head through the wall , feels like my heads on fire in the back at the base of my neck , pain shoots through my right eye, feels like my right side of my face is numb ....someitmes the pain does get so intense i feel sick to my stomach but not often ....sound and light doesnt effect me .....i originally went to the dr because i thought my bp was acting up i could feel it in my head ....wasnt it was these headaches and 6weeks later my friends still here...

Welcome to the website. The symptoms you describe here do seem more like clusters now that you have made that differentiation. Sorry you have a reason to look for us. I hate to see anyone suffering from this crap.

I think there was a mis-understanding based on your original wording. 6 - 8 attacks a day can pretty much seem like an "all day headache," but it is very important that you describe each of them in individual terms to keep from being a.) misdiagnosed by docs and b.) misunderstood by other ch sufferers.

I post the following a lot, but it is all good info:

As you have no doubt discovered, the links to the left have tons of good info in them. There is even more on the OUCH website. Read everything you can and print stuff out that seems applicable. Unfortunately, you may end up teaching whatever doctor about CH.

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

http://www.future-drugs.com/admin/articlefile/ERN020304.pdf

Here is a link to some non-prescription alternatives different people have used to help with the pain:

http://www.clusterheadaches.org/resources/non_script_treat.htm

If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:

http://www.drugdigest.org/DD/Home/AllAboutDrugs

Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.

Oxygen is an excellent abortive. Works for most people when used properly. Defintely try this. As well as it works, I have a hard time understanding why more doctors do not prescribe it. If your doc won't prescribe it for you, you might try welder's O2. It's the same pure oxygen used by medical suppliers. Many people here use it and would be more than happy to help you set it up. Here is a link that tells about using O2 and shows a setup using welder's O2.

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Again, welcome to CH.com. There's no better place in the world for info and support.

Gator

Title: Re: Newbie CH
Post by becky8 on Dec 8^th, 2004, 4:45pm

Newbie,
Listen to Gator, he gave me excellent advice and those sites helped alot when I went to see my neuro when I was a newbie! Print some out and take with you.

becky8