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        New Message Board Archives >> Oct-Dec 2003 >> Lord, I wish this was under better circumstances..
        
(Message started by: R.S._Barker on Oct 25^th, 2003, 3:06am)

Title: Lord, I wish this was under better circumstances..
Post by R.S._Barker on Oct 25^th, 2003, 3:06am

Hello,

Just found this site, and having been diagnosed some 12 years ago, I've been in remission ( is that even the correct terminology ?) for about 7 months.

The main effect for me is a flushing feeling to start, with severe crippling pain that literally lasts from 4 to 7 minutes, to as long as 47 hours. In all instances as well, the skin near my temples ( depending on the side affected ) becomes so tight that it feels as if my skin is going to burst.

Heartrate during one attack while getting a catscan - yes, a catscan was 220, with blood pressure up in the same range. I've detected 6 levels of clusters:

A) slow rising from the lungs, a flushed feeling much like what you feel when getting into a hot car in summer. It takes about 4 minutes for the pain to start, and is over in 2 to 3 minutes. Nothing to write home about.

B) faster flushing, with intense pain occuring within 3 minutes, lasting as long as 12 minutes. Makes you sit up and take notice.

C) with this level, the flushed feeling is instantaneous, and the pain lasts for up to 4 hours.

D) instant searing pain - ALWAYS happens when I'm asleep, and causes the most intense pain because of my prone position. Lasts up to 15 hours.

E) no warning. Pain forces me to seek asylum in the blackest of rooms, and I want to bash my head through the wall, or at least rip it off to relieve the pressure. In some morbid way, I think it might help, because then at least I could see what my bodies going through. Lasts up to 30 hours.

X) to say that my head feels like I'm standing between 4 jackhammers - each at one of the cardinal positions - each blasting away at my cerebral cortex is putting it mildly. Ya know that scene from Total Recall ..where Arnold is laying on the sand of Mars, with his eyes bulging and popping out of his head because of the lack of oyxgen ? ...thats me. I've had 3 of these in my life, and I hope I never have them again.

Whats works for me ?

Honestly, the one constant is to get into a pitch black room, stand on my tiptoes - which I " think " helps bring the pain back down below my eyes, put my fingers in my ears to ward out sound and breathe as deeply as possible. Along with this is a washrag - soaked in alcohol and stuffed into the freezer till frozen solid - then placed onto the back of my neck, and the base of my skull.

Medically i've tried Duradrin - this is like taking m&m's - although after a couple weeks, I do notice a slight increase in the amount of time between clusters.

I've tried Firoinal - a barbituate with codeine, and while it works in short spurts, it tends to absolutely drive me nuts, sleepy, moody and just plain dazed. On closer inspection though, this stuff does work better than Duradrin.

I've not tried Imitrex - but I'm interested to hear what the others say about it.

After 7 months - here I am, sitting with a massive X cluster headache and the only thing thats keeping me from bashing my head through the monitor is trying to pass along my story. I go to see the doc in a couple weeks, so I'll ask her about the Imitrex.

In closing, sorry for the long post, and please forgive my spelling. When I get to feeling better, I'll do a word check on this post. My sincere appreciation for creating this site - Lords know I've been looking, and lo and behold your here. ;;D

To those here whom suffer with this terrible plague, my sincerest and fondest wishes to each of you for a speedy recovery.

Cheers ...

R.S. Barker

P.S. I'm booked on the next flight to Mars..

Title: Re: Lord, I wish this was under better circumstanc
Post by ave on Oct 25^th, 2003, 4:53am

Hello Barker and sadly welcome to this planet of headaches...

There is a lot of information here, pleas take your time reading through ot. You'll find painkillers, OTC or otherwise, are not favourite here. Like M&M's as you put it.

But a clusterhead's case is far from hopeless; there are meds out there that have helped many of us; check out the buttons on the left, and for the archives try the search button top right, or the one in the toolbar lower down. Then there's oxygen, a life saver for many.

But first and foremost, go and see a neurologist. Check out the OUCH board, where the cluster resources menu offers a modest list of docs who know about clusters and what to prescribe.

Educate yourself and be prepared to educate your doctor - many of us have had to do that.

See you around (and not on Mars!)

Title: Re: Lord, I wish this was under better circumstanc
Post by BobG on Oct 25^th, 2003, 4:57am

Hey R.S., welcome to the board. Sorry you had a reason to come looking.

I’m not a doctor and the following is just my opinion, nothing more.

I do not think you’re suffering from cluster headaches.

Let’s start with your 6 levels of clusters:
Paragraph A…”is over in 2 to 3 minutes” Sounds more like CPH
Paragraph B…”occurring within 3 minutes, lasting as long as 12 minutes. Makes you sit up and take notice.” If it was cluster, at about the 5 minute mark you’d be doing more than sitting up and taking notice.
Paragraph C…”pain lasts for up to 4 hours” Although it can happen, 4 hours is a long time for a cluster.
Paragraph D…”Lasts up to 15 hours” This is not a cluster.
Paragraph E…”seek asylum in the blackest of rooms” Some sufferers are very sensitive to light, some a little, and some not at all. But the “blackest of rooms” is unusual for cluster sufferers.
Also Paragraph E…”Lasts up to 30 hours”. This is not at all typical of clusters. Migraines maybe?
Paragraph X…”lack of oxygen”. Are you saying you have trouble catching your breath or trouble breathing? Doesn’t sound like a symptom of clusters to me.

About your medicines….Duradrin is a migraine medicine and may be of some help for clusters. Firoinal (Fiorinal)- a barbituate with codeine is, for all intents and purposes, a pain killer. Pain killers usually do not work for clusters.

“diagnosed some 12 years ago” “I've not tried Imitrex”. Imitrex has been on the market since before you were diagnosed. It is one of the most used abortives used by cluster suffers. Why hasn’t your doctor prescribed it?

Like I said at the beginning, I’m not a doctor and can’t diagnose you. Please see a neurologist that knows headaches. Then let us know what you found out. Hope it's not clusters.

Title: Re: Lord, I wish this was under better circumstanc
Post by Kirk on Oct 25^th, 2003, 5:16am

Welcome to the board. Sorry you're here.
You're symptoms are all over the map from my experience.
IMHO you need to see a Neuro as soon as possible.
When you get to Mars look me up. I hang out with the spiders and Ziggy. Just ask anyone, they'll give you directions. [smiley=cool2.gif]

TTFN

Kirk

Title: Re: Lord, I wish this was under better circumstanc
Post by cathy on Oct 25^th, 2003, 5:27am

Hi R S Barker.....Welcome to the board have you taken the cluster quiz ? I sincerely hope that you have been misdiagnosed, but what's important now is that you are sure of what you are sufferering from, Bob has raised some important points. Pain is pain and im sorry your having a hard time, but please make sure your being treated for the right condition......

Let us know how you get on with the cluster quiz and if it's not clusters then find a good neurologist to correctly diagnose you and keep us posted.

Cathy :)

Title: Re: Lord, I wish this was under better circumstanc
Post by brain_cramps on Oct 25^th, 2003, 5:29am

I have to agree with Bob.

Who was it that diagnosed you? Was it a neurologist?

Pain for up to 47 hours? Clusters usually last from around 20 minutes to about 2 or 3 hours. (Is that about right, everybody?) I've had them last up to 6 hours and I've been told that is VERY unusual. Is that 47 hours of CONSTANT pain with no break, or is there periods of more intense pain and periods of less intense pain? If it is, in fact, clusters, it could be a number of clusters "back to back".

Again, about the imitrex... Imitrex has been around for quite a while. I was first prescribed Imitrex (pill) in 1992, and it was new to the market at that time. While the pill is the least effective of the 3 types (pill, nasal, injection), I would get relief about 1/2 of the time. Prior to that, the only non-pain-killer I was prescribed that did ANY good at all was cafergot.

Since it was introduced, imitrex is probably the most commonly prescribed med for clusters.

One other thing: Is the pain usually one-sided? I notice you mention "the skin near my temples ( depending on the side affected )". Does this mean that the pain is one-sided and has moved back and forth? While some people have them move from one side to the other, this is usually over a long period of time and (from what I hear) not really that common.

I think you should get yourself to a neurologist as quickly as possible (if you haven't been already).

Sorry for your pain, but this doesn't really sound like "typical" clusters (if there is such a thing ;) ).

It would help if you could answer these questions (and those asked by the others).

Let us know,
grant

Title: Re: Lord, I wish this was under better circumstanc
Post by ShariRae on Oct 25^th, 2003, 8:23am

I hafta agree with Bob & Grant here...not that your pain isn't real & excruciating..but it doesnt seem to fit the c/h pattern. I would get to a neuro ASAP & see what they say....In any event..welcome aboard!
Huggs
Shari

Title: Re: Lord, I wish this was under better circumstanc
Post by Prense on Oct 25^th, 2003, 10:37am

on 10/25/03 at 05:29:02, brain_cramps wrote:

Since it was introduced, imitrex is probably the most commonly prescribed med for clusters.

Is that because we ask for it? After three years being diagnosed, I had to ask for trex and O2. [smiley=frown.gif]

Definately, I agree...as you described, these symptoms do not fit the CH category. I've had long runs with the beast, but those are back to back attacks. The pain subsides, and then it comes back rather quickly. The longest single attack I have experienced has been about 3.5 hours. Some would also think it impossible to post that while "sitting with a massive X cluster headache." A visit to the neuro is a must...at least get a 2nd opinion. There is the possibility of 2 simultaneous conditions here. There also is the possibility of other "more serious" conditions. You should find out.

Best wishes R.S.!

Chris

Oh yeah, trex is also used for migraine attacks...that was the original use for the med as far as I am aware.

Again, we are not doctors! ;;D

Title: Re: Lord, I wish this was under better circumstanc
Post by R.S._Barker on Oct 25^th, 2003, 12:00pm

Now that I'm able to think clearly, I'd found this site a couple days ago, and had started to type this thread up in Notepad when I had another attack. The actual posting was done at the end of what turned out be
14 hours of living hell. Exhausted, and absolutely drained.

As to your questions, i'll try to answer these in more detail now:

Paragraph B…”occurring within 3 minutes, lasting as long as 12 minutes. Makes you sit up and take notice.” If it was cluster, at about the 5 minute mark you’d be doing more than sitting up and taking notice.

Also Paragraph E…”Lasts up to 30 hours”. This is not at all typical of clusters. Migraines maybe?

Paragraph X…”lack of oxygen”. Are you saying you have trouble catching your breath or trouble breathing?
Doesn’t sound like a symptom of clusters to me.

Well, in comparison to the massive X level these lower levels are tolerable. Tolerable does not mean that I can function, wish it did. The dark room may not work for you - nor may the wet frozen wash cloth, but from the standpoint of helping me " think " that it helps ease the pain slightly - I'll do whatever it takes to get even the slightest amount of relief.

Yes, I was diagnosed by a neurologist, yes I've been through the ringer in regards to finding doctors that actiually give a crap about my condition and know enough about it to understand - or take the time.

No, I've not been prescribed Imitrex as I'm just a full time caretaker for my grandfather, and money is very, very tight. I'm 39, he's 84. I'm in Ohio by the way.

Fiorinal does help me slightly, and whilst it never gets rid of them, it does seem to diminish the edge a small amount.

In looking back at this latest attack, its very apparent that your correct in regards to this not being a single cluster, but moreso a chain effect, where the pain while intense, does lessen throughout that period.

I've never been able to keep track of the number of times the pain lessens from say 10 down to 8 or 6 or whatever level it drops to. Though I have been able to sense a slight decrease in reflecting back on this latest one. Yes, the pain does reintensify shooting back up the scale. Then again I'm not concerned with the amount of relief I get - just that I do. If your that clear headed to keep track during a cluster, then I admire you greatly for your persistence of will. 8)

The left side is the predominant region. the skin on thats side feels like old shoe leather at times. I'd say about 90% of the attacks are focused on that side.

Sorry to be abrupt in my answers, its just that after finding a site that deals with what I've got, and posting what works for me, that I get blasted with doubt because I don't fit the norm. I realize I'm new to this board, and whilst my "symptoms " may not fit the standard cluster resume, I'm to the point in my life that I deal with these as best I can. I've learned that just because my broken leg may look different than yours, its still a broken leg - if that makes sense.

I'm hoping I've helped answer some questions here, and whilst I understand the site has a lot of info, now that i can function for the short term, I'll take a look around.

Thank you for the kind words, and for at least taking the time to post an reply.

Ciao,

R.S.

Title: Re: Lord, I wish this was under better circumstanc
Post by brain_cramps on Oct 25^th, 2003, 12:43pm

on 10/25/03 at 12:00:02, R.S._Barker wrote:

...that I get blasted with doubt because I don't fit the norm...

I didn't see anyone "blasting you with doubt". Because your symptoms "don't fit the norm", a lot of us would like to make sure you are not treating your condition incorrectly.

Since, you did not initially say that you were diagnosed by a neurologist, nobody here would have any way of knowing that you were.

I, for one, would hate to see someone be treated for clusterheadaches, when, in fact, the problem was much more serious. (ie. brain tumor)

Thanks for clearing that up.

Sorry about your pain. Take your time to look around, and feel free to join any discussion. (not like its up to me ;) )

PFDAN,
grant 8)

Title: Re: Lord, I wish this was under better circumstanc
Post by Prense on Oct 25^th, 2003, 1:49pm

Ditto to what Grant said...in no way was a "blast" intended... We tend to be a bit cautious about "advice."

That being said, hopefully your neuro got you a CT scan and an MRI in an attempt to rule out anything else. Yes, trex is expensive...figure out the expense of all the different meds that offer "some" relief though and see which is the better choice for you.

Please don't be upset or attempt to misconstrue what has been said here as anything negative towards you.

There are many treatments discussed here...read, read, read! There are also horror stories from what didn't work...or made things worse. I think after reading a bit from this site, you will see where we were coming from and why.

If you'll notice at the end of my previous post, you will see "Again, we are not doctors!" We are in no position to diagnose...just opinions here.

Welcome aboard...
Hope you find something that works R.S.!

Chris

Title: Re: Lord, I wish this was under better circumstanc
Post by taraann on Oct 25^th, 2003, 3:35pm

I must admit when I first read your post I cringed thinking the reply's to it might be harsh because your description of your pain didn't sound like the "norm" in regards to CH. BUt I was surprised and PLEASED that the replys were very gentle about the questions ppl had. Considering your current state of frequent intense pain it is TOTALLY understandable you are sensitive right now.

Well unfortunately you are yet another person in this terrible hellish pain and I welcome you to our "boat" as this place is often reffered to as a boat that each of us has our own oar to row with. Stick around cause this place has so much wonderful support and information to offer.

Title: Re: Lord, I wish this was under better circumstanc
Post by Patrick_A on Oct 25^th, 2003, 7:18pm

I thought the information offered was pretty good without any attacking noticed by me. I personally think they are correct. You don't sound like a typical CH sufferer. In fact everyone here that i know, they all have almost the exact same symptoms except for the difference in being episodic and chronic. I can give you a good description and it will apply to 90% or more of the people here.
1st CH in cycle is usually mild, and we all go into denial, hoping its just a sinus headache. Then the CH ramps up quickly to a peak of 1 to 8 CH's a day, lasting on average of 2 hours. Typically for me, the Apex of my cycle also brings on the Kip10's, and then i start going back the other way. Then all of a sudden i realize i haven't had a CH in a few days and they are gone, Just as sudden as they came.

I am not attacking you. In fact what you seem to be suffering sounds like a whole lot worse than what is typical here. I hope you go for a 2nd opinion!

Best of luck, Patrick :)

Title: Re: Lord, I wish this was under better circumstanc
Post by Charlie on Oct 25^th, 2003, 10:18pm

Hi Barker.

So much of what you say sounds like CH. I'm betting that the 40 hour + attacks vary greatly in intensity. Perhaps you mean they come and go over this period?

Clusters are almost always one sided and behind the eye. They wake one out of a sound sleep. Sleeping or sitting still for that matter, isn't in the cards with CH. It makes one want to beat the walls and scream.

I hope you stick around. Nothing bad was meant in any posts here. Sorry if it sounded that way though.

Charlie

Title: Re: Lord, I wish this was under better circumstanc
Post by forgetfulnot on Oct 25^th, 2003, 10:54pm

See your IM,s

Lee :)

Title: Re: Lord, I wish this was under better circumstanc
Post by judyw on Oct 26^th, 2003, 2:19am

Welcome RS, Sounds as you have a good handle on what you are dealing with...read read read, and copy and share some of the information found to share with your doctor...one thing I have learned after a lifetime of CH is that it has very individual patterns which are sufject to change at any time...each of us have our own way of coping and as long as you have had good medical assessment and rule out of other malady's, then, whatever works for you is okay by me...Please keep us posted on what you learn and know that we are here to listen...share...support...143 ;)