Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Clustergraines, the new headache
        
(Message started by: Jasen on May 16^th, 2005, 2:08am)

Title: Clustergraines, the new headache
Post by Jasen on May 16^th, 2005, 2:08am

New member here :)

Why do I call it a clustergraine? In my research today I found I display nearly equel symptoms of both

I had cluster headaches some years ago, eye pain, nausia, dizzyness, tunnle vision going to black and white lasting from 1-2hrs. everyday.
This new bought is the same without the vison problems and not so bad on the nausia/dizzyness. They started at 1 a day for 6-8hrs and then moved to 2-3 a day and now to 1 lasting for 16-20 hrs.
Except for this last one, which is all but gone and has lasted for 38hrs. so far.

I'm taking Inderal 20mg twice a day and Relpax 40 mg as needed which is 2-3 times a day. In 3 weeks of treatment things have not impoved, infact they've gotten worse. I talked to the on call Dr. this weekend who was not my Dr. and he says that much Relpax for 2 weeks is bad news and I'm probably getting MOH's.
I stopped taking everything yesterday afternoon and had one heck of a terrible night that only members here can imagaine.

What am I getting at, well now I'm lost. I didn't think I want to see my Family Dr. for this anymore, but I'm not sure where to go from here. I need some action and fast. There getting so bad that I'm starting to miss work. 3 days this week alone. My employeer is empathetic, but that will only last so long.

Thanx for listening,
Jasen

Title: Re: Clustergraines, the new headache
Post by thomas on May 16^th, 2005, 8:32am

on 05/16/05 at 02:08:14, Jasen wrote:

nausia, dizzyness, tunnle vision going to black and white

Not typical cluster symptoms. Get thee to a neurologist.

Title: Re: Clustergraines, the new headache
Post by kissmyglass on May 16^th, 2005, 8:51am

Take the Cluster quiz on the left this page...let us know how you make out. Like Thomas said....get to a neuro asap..

Kev

Title: Re: Clustergraines, the new headache
Post by lionsound on May 16^th, 2005, 9:36am

Jasen,

As said above PLEASE get to a neurologist ASAP for diagnosis.

it is possible to have more than one HA going on at once( I do) and a good NEURO can help you sort it out to treat it properly.

Whatever your diagnoisis, Be sure to ask the neuro about oxygen(see link on the left called "oxygen info" ) because I find it helps with my migraines and clusters so ya never know, it may help you too.

Be well and PF,
lionsound

Title: Re: Clustergraines, the new headache
Post by Bob P on May 16^th, 2005, 10:51am

They are actually called cluster migraines. They are migraines which show some traits of clusters or vice versa.

Title: Re: Clustergraines, the new headache
Post by Lizzie2 on May 16^th, 2005, 10:53am

on 05/16/05 at 10:51:54, Bob P wrote:

They are actually called cluster migraines. They are migraines which show some traits of clusters or vice versa.

Except not by the IHS - that is not a recognized diagnosis.

Title: Re: Clustergraines, the new headache
Post by seasonalboomer on May 16^th, 2005, 10:58am

Maybe they should be "Miglusters"

Title: Re: Clustergraines, the new headache
Post by Bob P on May 16^th, 2005, 11:01am

The IHS may not but doc Goadsby does:

Quote:

Headaches Sharing Some Clinical Features With Cluster Headache
The cluster headache variants discussed in this article consist of a diverse group of relatively uncommon headache disorders. Some of these headaches differ from cluster headache primarily in their frequency, duration, or treatment response. These disorders consist of paroxysmal hemicranias, hemicrania continua (HC), and SUNCT syndrome (short-lasting unilateral neuralgiform headaches with conjunctival injection and tearing). A different group of cluster variants is characterized by their clinical presentations, which share features of cluster headache and another primary headache disorder, the cluster-tic and cluster-migraine syndromes. The hypnic headache syndrome does not share the cranial autonomic features of cluster headache, but because it may be misdiagnosed as cluster resulting from the pattern of short-lived nocturnal attacks it also is described in this article.

Section 3.3 of the IHS criteria says they are not sufficiently validated.

Title: Re: Clustergraines, the new headache
Post by Lizzie2 on May 16^th, 2005, 11:19am

What was the date of that article? Just out of curiosity...

Title: Re: Clustergraines, the new headache
Post by Bob P on May 16^th, 2005, 12:28pm

Don't see a date but the article is in the OUCH Library here:

http://www.clusterheadaches.org/library/general/ch_general.htm

Title: Re: Clustergraines, the new headache
Post by Jasen on May 16^th, 2005, 12:31pm

First the acronym IHS ?

've taken 3 headache quizes and I am about 50/50 cluster/migraine.
I've read a litlle about the O2. Is that a treatment or just used while waiting for the Replax and other similer meds to kick in?

Thanx for the advice,
Jasen :)

Title: Re: Clustergraines, the new headache
Post by lionsound on May 16^th, 2005, 1:10pm

Jasen,
The O2 can be used as an abortive all by itself or while waiting for the triptan(like relpax, imitrex)to kick in.

The idea is to use it, if you can, at the first sign of pain.

Be well,
lionsound

Title: Re: Clustergraines, the new headache
Post by Bob P on May 16^th, 2005, 1:20pm

Quote:

First the acronym IHS ?

International Headache Society. They write the diagnostic criteria for headaches that most of the medical community goes by.

Title: Re: Clustergraines, the new headache
Post by Karla on May 16^th, 2005, 2:55pm

Remember it is possible to have both such as I do and a few others.

Title: Re: Clustergraines, the new headache
Post by sandie99 on May 16^th, 2005, 3:47pm

on 05/16/05 at 14:55:19, Karla wrote:

Remember it is possible to have both such as I do and a few others.

And a few others?! :o
CH would be enough!

Title: Re: Clustergraines, the new headache
Post by Jasen on May 16^th, 2005, 4:41pm

Thanx again. I found a headace clinic here at one of the areas top medical facilitys. so thats where I will go next, unless by the grace of the powers to be, I'm at the end of my cycle.

Thanx for the input,
Jasen :)

Title: Re: Clustergraines, the new headache
Post by Lizzie2 on May 16^th, 2005, 4:57pm

Yeah I'm definitely in agreement in that it is possible to have both - and in which case you have to separate them out to take the quiz or fit in any diagnostic box. Took me awhile to get that straight.

My diagnoses are:
New Daily Persistent Headache (Chronic Daily Migraine)
Chronic Cluster Headache
Basilar/Confusional Migraine

It's a little messy getting them all straight and what meds go with what, etc etc...but it can be done with a good neuro who specialises in headaches/migraine.

Best of luck!
Lizzie :)

Title: Re: Clustergraines, the new headache
Post by BarbaraD on May 16^th, 2005, 6:18pm

My neuro came up with another one for the migraines .. The Alice in Wonderland Syndrone. That's where things get out of focus and you don't really see what you think you're seeing. Like the characters in AIWL book. The guy that wrote it (and drew the pictures) was doing it during a migraine.

Just what I needed CH and seeing funny things.

I'm wondering if CH can trigger other headaches [smiley=huh.gif] Just a thought but I NEVER had headaches until I got CH and now I've got three different kinds -- all dibilitating. Lucky me -- I'm at SS age so I don't have to go on disability, but probably would be after a couple more years of this crap.

**Kinda different subject: If any of ya'll are Vets, go to the VA, get diagnosed and get your meds there -- they're a LOT cheaper or free (depending on income and assets).

Title: Re: Clustergraines, the new headache
Post by Jasen on May 16^th, 2005, 11:01pm

Maybe we should call these multipul types of headaches, ballistic headaches, 'cause my head sure feels like the milisecond that a ballistic missle impacts it's target. [smiley=laugh.gif]

Title: Re: Clustergraines, the new headache
Post by Pinkfloyd on May 17^th, 2005, 1:01am

on 05/16/05 at 13:20:42, Bob P wrote:

International Headache Society. They write the diagnostic criteria for headaches that most of the medical community goes by.

They may not want to "officially" recognize them because that would give an easy out to docs that don't want to work hard enough to make sure it's one or the other. (just a guess and have no data to prove it so don't ask;) Once its on the books, more cluster's will be mis-diagnosed as cluster-migraines, as will some migraines.
Just because it's not yet recognized "officially" or it's rare, doesn't mean it doesn't exist. BobP's correct and I think most of the more prominent docs that see a lot of cluster patients will confirm it's existence. Including at least one US doc, that is an Honorary Member of OUCH.

Bobw

Title: Re: Clustergraines, the new headache
Post by Gator on May 21^st, 2005, 12:12am

on 05/16/05 at 18:18:25, BarbaraD wrote:

**Kinda different subject: If any of ya'll are Vets, go to the VA, get diagnosed and get your meds there -- they're a LOT cheaper or free (depending on income and assets).

Yeah, unless your one of those mega rich vets who makes over $33,000 per year, then you jump through all their hoops just so they can tell you you make too much money for your country to bother with you. I'd have to divorce my wife in order to be seen in a VA Hospital. Thanks Dubya! Way to show us vets how much you appreciate us!

You're right, Barb - depending on income!

Title: Re: Clustergraines, the new headache
Post by bnfreeman on May 24^th, 2005, 11:24am

I was diagnosed by my doctor as having cluster-migraines. I used to always have migraines then woke up in the middle of the night having the clusters. Been like that ever since. I get really sick with my clusters when theyare at their worst and mine very rarely will just go away all of a sudden like a lot of people's CHs do. Mine stay for hours on end until I go to the ER.

BF