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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> The Beast is back!
        
(Message started by: roudym2 on Aug 19^th, 2004, 8:01pm)

Title: The Beast is back!
Post by roudym2 on Aug 19^th, 2004, 8:01pm

[smiley=huh.gif]

I'm baaaaaaaacck!

New to this site as I just tripped over it. Been doing a lot of that lately.

Please read this slowly as I can't type very fast, or well.
Recently went to h/a clinic at ClevelandClinic. Very impressive campus by the way. Covers all specialties and is rated #4 in the US by a major weekly newsmagazine. Big deal if they can't help!

I have had a nearly constant headache of varying intensity for over a year. My PCP couldn't help as this is way outside of her experience. That's right, she! Ever had a physical from a beautiful blonde? About the only fun I've had in a while! Sorry, Doc.

Saw a local Neuro and after testing, he said I had tension h/a , gave me a scrip for Depakote, and said get back to work. Fired his ass on the spot!

I didn't mention that I have been unable to work in 11 months because of the pain and the hazardous nature of my job. I am(was) a mold maker.Thank goodness I had disability income insurance and that it was approved. Otherwise I'd be hosting a new show on cable called "This Old Box". After 90 days, my short term disability payments ended and I had to re-qualify for Long-Term benefits. My employer's policy is, once you go on Long Term, you are terminated. Totally unfair, comepletely unsympathetic, and absolutely legal! I checked with 3 different law firms. What a country!!!!!!!!!

About 25 years ago, I was diagnosed with CH by a newbie Neuro and lived with it for a few years. He said I would outgrow it at about age 50. By the way, guess who he shares an office with now? See above.

After about 20 years of peace, these new h/a's started.

Looking for a local h/a clinic with a good rep(hah!) I made the appointment in Cleveland. After taking my history, looking over my records and test results, including MRI, MRA, Opthalmic exam for temporal arteritis,and on and on, the head guy at the clinic told me that I now have Chronic CH. I was not aware of such a thing. The beast can and does change it's stripes!

By the way, I suggest that all of you get and keep copies of your records, and pass out copies of these as needed. You're gonna do that alot if you have the luck I do.

Ialso have a Movement Disorder diagnosed at U of Michigan (the place does not impress me), Clinical Depression(lifelong), much anxiety, and a lot of anger.

Just started meds prescribed by the clinic

Verapamil.........480 mg/day

Indomethacin..225mg/day

Melatonin.........15mg/day

No real affect yet, too soon to tell. Will contact them again in a week.

Also having vivid dreams of a fairly strange nature that often wake me up to find myself sitting up in bed finishing a conversation. Kinda spices up the anxiety factor. Today I was hollering in my sleep that I was being attacked by a bear. Good thing my son was there to "chase it away"!

Any of this make sense, or am I just babbling like an old fart?

I'm gonna post this now cause this is the second attempt at posting. The first one was swallowed whole by this comp somehow!

Title: Re: The Beast is back!
Post by don on Aug 19^th, 2004, 8:08pm

Quote:

Any of this make sense, or am I just babbling like an old fart?

Both.

The verapamil ussually takes 10-14 days to be effective.

You didn't mention any abortive.

Title: Re: The Beast is back!
Post by roudym2 on Aug 19^th, 2004, 8:09pm

indomethacin........225mg/day. Isn't that it?

Title: Re: The Beast is back!
Post by don on Aug 19^th, 2004, 8:15pm

Nope. An abortive is ussually one of the triptan class meds.

Imitrex injections work like a charm for me at only 1/3 the prescribed dosage.

Title: Re: The Beast is back!
Post by roudym2 on Aug 19^th, 2004, 8:20pm

I have some Imitrex tabs that my pcp gave me....they don't do squat and you can only take two in 24 hrs.

Title: Re: The Beast is back!
Post by don on Aug 19^th, 2004, 8:22pm

How long does a CH attack normally last for you.

Title: Re: The Beast is back!
Post by roudym2 on Aug 19^th, 2004, 8:24pm

as long as I am vertical. The more active I am the worse it gets.

Title: Re: The Beast is back!
Post by don on Aug 19^th, 2004, 8:34pm

Minutes? hours?

Title: Re: The Beast is back!
Post by roudym2 on Aug 19^th, 2004, 8:36pm

sometimes all day

Title: Re: The Beast is back!
Post by Kris_in_SJ on Aug 19^th, 2004, 8:55pm

Hi,

It seems to me that you need to do a little research (read the links to the left for starters). Take the cluster quiz. Does it fit? Your initial post sounded like you've been in constant agony for years - with the emphasis on constant.

If you do have CH, no CH specialist worth his/her weight in brain matter would not prescribe an abortive - Imitrex injectible, 02, or Zomig - for starters - not pills!

Your vivid dreams are most likely from the Melatonin - it is well known for that side effect. The Verapamil is probably OK in terms of dosage, though many go higher.

You should also take not that it may be very possible that you do have chronic depression - CH in chronic stage can certainly cause that ... as can any chronic pain.

I don't have the answers. I can only encourage you to keep trying for an answer. By the way ... U of M is one of the best .... spoken like a true Michigander.

Hugs and wishes for many PFDAN,

Kris

Title: Re: The Beast is back!
Post by don on Aug 19^th, 2004, 9:15pm

A cluster headache will not last all day.

Title: Re: The Beast is back!
Post by pubgirl on Aug 19^th, 2004, 11:17pm

roudym

Just to echo Don. Unless you have another headache syndrome in addition, this isn't CH and your 'newbie neuro' has misdiagnosed.

Perhaps this may be worth a look:

http://jnnp.bmjjournals.com/cgi/content/full/72/suppl_2/ii2?ijkey=a7222a9463c37104b620f9e4747480fcb97d3026&keytype2=tf_ipsecsha

and a less 'clinical' one

http://www.primarycarenet.org/cme/CME8.CFM

If your pain can be continuous , but overlaid with Ch type attacks , have a read of

http://www.upstate.edu/neurology/haas/hphemi.htm

Hope this helps

Wendy

P.S. Also, not directed at you , but for clarification for anyone reading this, chronic CH doesn't mean having pain all the time, it is a medical arbirtrary classification for how much pain free time there is between bouts.

Title: Re: The Beast is back!
Post by roudym2 on Aug 20^th, 2004, 2:37am

Thanks for the feedback guys, but keep in mind that I am just an old fart with h/a's. Not highly educated rocket scientists like you folks seem to be.

I'm not stupid, but I am wandering on unfamiliar ground and too many "maps" can be worse than none at all.

I will continue to carry on but don't expect an old codger in pain to understand all that you do.

Title: Re: The Beast is back!
Post by Gator on Aug 20^th, 2004, 4:10am

Welcome to the site. There is lots of information to be found here, both from the links to the left and from people's own personal experiences.

Please understand, no one is saying you do not have CH. The symptoms you describe are not typical of normal cluster headache symptoms, which is why people suggested you do some research on your own. You don't need to be a rocket scientist. If you can read and I assume you can since you can write ;;D - check out the information on the links to the left. A lot of good information there. Also check out the links given by pubgirl. There are numerous cases of people having more than one type of headache at the same time.

If you are having 15 to 180 minute long attacks of excrutiatingly severe pain on one side of your head centered on the eye, any neuro with half a brain and any compassion that knows about CH should have prescribed you an abortive to kill the individual h/a's. Imitrex Injections and Zomig Nasal Spray seem to be the 2 fastest working meds. Pills don't work fast enough to be an effective abortive. If you have heart or blood pressure trouble, that may explain you not being prescribed triptans for aborting the attacks. S/He still should have prescribed you 100% oxygen at 10 - 15 liters per minute through a non-rebreathing mask for 10 to 20 minutes to be taken at the onset of an attack. Approximately 80% of us get decent relief from the O2 alone.

Information is your best weapon. We have discovered you cannot depend on the doctors to know everything and in a lot of cases - anything about CH. Read, Read, Read. Print out the info that seems to pertain to you and take it to your doc.

Again, welcome to the site and good luck in your search for an effective treatment program. If you have questions - ask. Someone is usually here 24/7.

Gator

Title: Re: The Beast is back!
Post by pubgirl on Aug 20^th, 2004, 4:15am

Sorry Rudy

We're mostly 'old farts' here if the truth be known ;;D
Have tried to summarise the information below

(and Gator, I AM saying that IF the headache lasts for days it isn't CH)

For some clarification Rudy, hope it helps

Cluster Headaches only last about an hour on average. Individuals have had individual attacks that last a couple of hours, and a few very extreme cases of 4 hours but this is unbelievably rare and certainly doesn't fit the criteria for diagnosis.

We tend to post links to people because we are not doctors and encourage people to find out for themselves.

There are 4 more common primary headache types where the pain can last for a long time, or even be there all the time.

They are:
Migraine
Chronic Daily Headache
Hemicrania Continua (this is the one where constant pain can be overlaid with CH type attacks)
Medication Misuse Headache

There are in addition some physical problems which can result in constant headache, but these are only checked by neuros via scans/physical examinations etc.

We are suggesting that you need to go and research and also seek another neurologist as your symptoms as you describe don't fit CH and the treatments you are being given may well be wrong.

Hope you get some relief from this pain soon

Wendy

Title: Re: The Beast is back!
Post by Gator on Aug 20^th, 2004, 4:47am

on 08/20/04 at 04:15:25, pubgirl wrote:

and Gator, I AM saying that if the headache lasts for days it isn't CH.

Hey, it's all good with me. Dude seemed kind of vague on just what all his symptoms are. That is why I said his symptoms (the ones he would tell us) were not typical and explained the symptoms he should be having if he has ch. I also re-iterated your commentary on multiple headaches and re-directed him to your posted links in addition to the info on the left.

I like to fight and agrue as much as the next person. I could have torn into him about his non-CH like symptoms and flown off the handle over the rocket scientist comment. Sounds like he may already have been the victim of bad info. In this case I was just trying to help the dude get the info he needs and avoid another 90+ entry slugfest.

Gator

Title: Re: The Beast is back!
Post by pubgirl on Aug 20^th, 2004, 4:59am

Gator

What are you talking about? There's no argument here. I luvs ya :-*

Wendy

Title: Re: The Beast is back!
Post by Jaime on Aug 20^th, 2004, 9:48am

I think it takes us newbies awhile to 'learn the lingo' of clusterheads. The term shadow confused me, because I wasn't making a distinction between the periods of debilitating intense pain which last up to an hour for me, and the usually several hours of dull ache between bouts. It was all one headache to me. A headache that lasted 3 weeks and counting. It wasn't until I started reading this site that my own symptoms started making any sense.

Title: Re: The Beast is back!
Post by synergy on Aug 20^th, 2004, 9:58am

Hey Rudy - dont know if this will be of help but when we were in the process of getting my partner diagnosed we were looking at every type of extreme headache there was.

There was one i came across called a spinal tap leak headache. Sufferers of this type only get relief when laying down - its where something from the spine leaks into the head and causes the pain.

when we mentioned it to the specialist she said you cannot get these spinal leak headaches unless you have had a procedure called a "spinal tap" or have damaged your spine in some way.

It may be nothing but i thought it was worth me mentioning as you said that from the minute you get up you are in pain.

Have you ever had a spinal tap?
Have you ever damaged your spine in anyway?
Do you get relief from the pain by laying down?

sorry to be nosey hun - and by the way WELCOME TO THE BOARD!!!! ;;D

luv sarah xx

Title: Re: The Beast is back!
Post by roudym2 on Aug 20^th, 2004, 2:58pm

ok seems to be some nice people here that want to be supportive, and some others that have an attitude problem. Maybe this is just not the right place for me to "live".
Sorry if I stepped on any ego's, and good luck to all.

Title: Re: The Beast is back!
Post by pubgirl on Aug 20^th, 2004, 3:05pm

Rudy

If you are referring to me, I'm trying to help!

Wendy

Title: Re: The Beast is back!
Post by Prense on Aug 20^th, 2004, 3:07pm

on 08/20/04 at 14:58:55, roudym2 wrote:

[smiley=huh.gif]

Title: Re: The Beast is back!
Post by farmboy on Aug 20^th, 2004, 8:09pm

Hey guys i am not sure but that sounded like a put up.

I might be all wrong here but............... i really did not read anything in this post but people trying to helpful.

Title: Re: The Beast is back!
Post by john_d on Aug 20^th, 2004, 8:40pm

on 08/20/04 at 14:58:55, roudym2 wrote:

I read this thread up and down and I don't see anything that has an attitude problem, am I missing something? [smiley=huh.gif]

edit
BTW WTF with quote below?
this reminds me of Freddy, remember nutty Freddy ;)

on 08/19/04 at 20:01:31, roudym2 wrote:

[smiley=huh.gif]

I'm baaaaaaaacck!

New to this site as I just tripped over it. Been doing a lot of that lately.

Title: Re: The Beast is back!
Post by Mac on Aug 20^th, 2004, 9:28pm

I didn't read anything in this thread that warranted the hostile response that it got. [smiley=huh.gif]

Title: Re: The Beast is back!
Post by Kevin_M on Aug 20^th, 2004, 9:38pm

He mentioned some clinical depression. Not atypical response.

Kevin M

Title: Re: The Beast is back!
Post by Drk^Angel on Aug 21^st, 2004, 2:34am

I was wondering something roudym2... Did the doc say CH or Cluster Headache? If he said CH, could it be he actually said HC or meant to say HC? HC is Hemicrania Continua, and is thought by many experts to be a TAC like Cluster Headaches because it shares many of the autonomic symptoms of CH and other TACs. The primary difference between the two conditions is that HC is continous, daily, moderate pain, but can have exacerbations of severe pain that are similar to CH attacks. The primary form treatment for HC is indomethacin, whereas CH rarely responds to indomethacin therapy.

Below is the IHS diagnostic guidelines for Hemicrania Continua (IHC 2nd edition):

4.7 Hemicrania continua

Description:

Persistent strictly unilateral headache responsive to
indomethacin.

Diagnostic criteria:

A. Headache for >3 months fulfilling criteria B–D
B. All of the following characteristics:
1. unilateral pain without side-shift
2. daily and continuous, without pain-free periods
3. moderate intensity, but with exacerbations of severe pain
C. At least one of the following autonomic features
occurs during exacerbations and ipsilateral to the
side of pain:
1. conjunctival injection and/or lacrimation
2. nasal congestion and/or rhinorrhoea
3. ptosis and/or miosis
D. Complete response to therapeutic doses of
indomethacin
E. Not attributed to another disorder(1)

Note:
1. History and physical and neurological examinations
do not suggest any of the disorders listed in
groups 5–12, or history and/or physical and/or
neurological examinations do suggest such disorder
but it is ruled out by appropriate investigations,
or such disorder is present but headache
does not occur for the first time in close temporal
relation to the disorder.

Comment:
Hemicrania continua is usually unremitting, but
rare cases of remission are reported. Whether this
headache type can be subdivided according to
length of history and persistence is yet to be
determined.

Hope this helps.

PFDAN..................................... Drk^Angel

Title: Re: The Beast is back!
Post by synergy on Aug 21^st, 2004, 4:05am

Perhaps he was pissed cos he didnt have CH - all we were trying to do was give him advice! - and if it wasnt CH then he should be well happy anyway!!!

Title: Re: The Beast is back!
Post by Charlie on Aug 21^st, 2004, 4:14am

Sorry you have to deal with such pain and perhaps this very horror.

One thing that I know about clusters is that they will wake you out of a sound sleep. No one can sit still, sleep or relax during an attack. It's a good test.

Stick around and look us over. Lots of good ideas here.
Let us know how you're doing.

Charlie