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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Please help.....argghhhhhh
        
(Message started by: sportypants on Feb 18^th, 2004, 10:54am)

Title: Please help.....argghhhhhh
Post by sportypants on Feb 18^th, 2004, 10:54am

Hi,

Ive just been diagnosed with CH and am crossing my fingers that my doc has got it wrong (she usually does but all the signs are that I have CH).

Im 31 and have never smoked & drink moderately, last Wednesday I experienced pain similar to a sinus infection I had around 6 years ago, my doc prescribed me amoxillan (250mg) tabs which done very little.

My head is hurting a few times per day, my eye does water (but I have weepy eyes anyway), my nose does get blocked (but I have a cold) and my eye does become a little puffy. I know the signs aren't good but I am hoping its all gonna clear up soon and never re-appear.

I am so frightened that I could now be suffering from CH and dont know what to do, my doctor says my blood pressure was high when I visited and that could be causing the headaches and also the fact that I have a cold could be contributing to the pain, does anyone agree with this?

Also I was prescribed Imigran 10mg spray which I took for the first time earlier and it didnt do anything, eventually the pain vanished after about 2-3 hours which is what its been doing since last week, I also went 2 days (sun/mon) with no headaches just a small dull sensation.

Please can somebody give me their opinion on this as Im absolutely gutted :(

BTW I really symathise with anyone who suffers with this terrible condition, by the sounds of it my pain isnt half as bad as some poor buggers whos posts Ive just been reading, I do hope they find a mirracle treatment to rid the condition once and for all for everyones sake.........

Regards,

JJ

Title: Re: Please help.....argghhhhhh
Post by thomas on Feb 18^th, 2004, 11:08am

Read, read, read......... I hope you don't have ch either, but you may :(, in any case, welcome aboard.... There are other Brits here who can better advise you, as they are more familiar with the medical industry on your side of the pond.

Title: Re: Please help.....argghhhhhh
Post by ave on Feb 18^th, 2004, 12:01pm

Hmmmmm, as Wendy said elsewhere, the British medical profession has discovered clusters and is now discovering cluster patients right left and center.

You don't say anything about it being one-sided. Clusters usually are. If ithe pain is in the centre of your forehead, it is a fair bet it won't be clusters.
Have you tried rinsing with lukewarm salt water? Apply with an eyedropper; tastes foul but does clear up the sinuses.
In case it is clusters, try and contact

http://www.clusterheadaches.org.uk

the british site for cluster sufferers. They know all about the NHS and you have a better chance of a fast answer as they are, of course, in your own time zone.

all the best

Title: Re: Please help.....argghhhhhh
Post by kissmyglass on Feb 18^th, 2004, 12:13pm

Ch pain is like pain I never knew existed. If your pain is not so bad, hopefully you have something else...
Good Luck

Kev

Title: Re: Please help.....argghhhhhh
Post by Prense on Feb 18^th, 2004, 8:37pm

on 02/18/04 at 12:13:40, kissmyglass wrote:

Ch pain is like pain I never knew existed. If your pain is not so bad, hopefully you have something else...
Good Luck

Kev

I'd slam my fingers in a car door every two minutes if it would keep the CH away...

Title: Re: Please help.....argghhhhhh
Post by Flsunshine on Feb 18^th, 2004, 9:11pm

If someone points gun at you and says "i'm going to shoot you" and you say PLEASE DO you have CH

Title: Re: Please help.....argghhhhhh
Post by Bob_Johnson on Feb 19^th, 2004, 9:52am

Your expressed fear will drive up BP to a remarkable degree. While you are working with your doc, please do homework by reading the medical material (buttons on the left) and make contact with OUCH-UK. Learning about the problem will help reduce the fear.

Very possible that the spray didn't work because of the nasal congestion--so that was a poor test of whether you have CH or not.

Title: Re: Please help.....argghhhhhh
Post by mediccpc on Feb 19^th, 2004, 2:50pm

JJ,

Welcome sorry you had to find us. As a paramedic I can tell you that your high blood pressure could cause Headaches. I think that this may be different though. Usually the headache will stay around for as long as the Blood Pressure is high. Once the pressure comes down the pain goes away. Since your headaches come and go, I would not think that that Hypertension is related. Again, I am a paramedic and you should continue to follow up with your doctor.

Chris

Title: Re: Please help.....argghhhhhh
Post by sportypants on Feb 19^th, 2004, 5:14pm

Firstly, thank you all for replying.

I have been back to the doctors and read extensively on CH and my first thing is I definately clear, that is I DO NOT experience as much pain as nearly all of you unfortunate people have described, whilst the pain renders me unable to work/continue as normal, I do find that my natural reaction is to lie down, push my hand into my right eye and hope the pain goes ASAP.

As I said before, my symptoms are uncanny for what my doc/I read about CH; Running/blocked nose on the side where the pain is, tearing in the eye where the pain is, redenning of the eye and pain ( but nowhere near as bad as you all have described). My first experience consisted of 4 days, exactly 26hrs apart each time, 2-4 hours of pain above right eye, side temple and my ace felt very tender...the pain also seemed to throb and climb in grade over 10 seconds like gradd 1,2,3,4,5,6,7,8,9,BANG! then 1,2,3....dont know if that makes sence?? Also I have experienced NO Visual problems or no Nausea/Sickness?

Since my first post I have only suffered 1 more attack and have at this time been headache free for 2 days, although I constantly feel a slight twinge above my right eye quite regurarly but it seems to stop at that.

My doctor at least knew what CH was and I am now hoping/thinking that maybe combined with my sinus/cold I may have been experiencing sinus pain and maybe TH or something, I am a computer programmer and do spend long periods typing which I know is a cause for TH so maybe this is what I experienced, with regards to the constant twinge? Any ideas??

As mediccpc pointed out, I understand too that my high BP can be a casue of headaches and have been back to the doctors to test me for any blood/kidney and other possible problems.

My pain is like I said nowhere near as bad as you definate CH sufferers have described so Im lost now, is this the beginning of CH or is the pain always WHAM! there straight away?

Anyway, I am determined to follow this through and find the definate cauase as to hopefully make others aware that sometimes things may not be as they appear (what I mean is PLEASE GOD make it a simple TH/Sinus combo and not the BIG MAC!!).

To close, Id just like to add how much I feel for all CH sufferers, my experience so far is undoubtedly nothing compared to what many of you gop through, for that you have my utmost repect and admiration for dealing with the uncertainess you face each evening/morning thinking when the beast is going to strike next .......

Sincerely and respectfully,

JJ

Title: Re: Please help.....argghhhhhh
Post by thomas on Feb 19^th, 2004, 5:17pm

My first two cycles were very short and the pain level was relatively low............. so you sound very familiar to my story......... I was able to cope with them without meds......... I did have an er visit once...... in the 2nd cycle........ as the years went on the cycles got longer and more pain intensive........ so if you are like me...... prepare yourself my friend...... :( But hey at least you have us...... ;;D

Title: Re: Please help.....argghhhhhh
Post by Belle on Feb 19^th, 2004, 5:30pm

I was the same as Thomas. When I had my first two cycles ithey only lasted about two weeks and I dealt with it with Tylenol. They progressively got longer and more intense as each year passes. I look at a bottle of Tylenol now and laugh. Hope you never have to experience that great of pain.

Wishing you more PFD's

Belle
::)

Title: Re: Please help.....argghhhhhh
Post by Prense on Feb 19^th, 2004, 8:30pm

on 02/19/04 at 17:14:09, sportypants wrote:

is this the beginning of CH or is the pain always WHAM! there straight away?

I'm chronic, so no cycles...the first couple of years, while debilitating, were no where near as bad as they have been the last 8 years.

For me, they came on relatively mild. Still hurt like hell, but I'd rate the first couple of years at a kip 7 with an occasional 8.

Chris

Title: Re: Please help.....argghhhhhh
Post by BobG on Feb 19^th, 2004, 8:49pm

Hey JJ,
You said

Quote:

my natural reaction is to lie down.

That goes against everything I've ever head about clusters.

Do these words ring a bell?
Difficult to remain still - movement can 'trigger' attacks
Excruciating jabs

Has your doctor suggested it may be CPH, Chronic Paroxysmal Hemicrania

CPH is very responsive to Indomethacin

Click this to compare CPH, clusters and other typs of headaches.
http://www.clusterheadaches.org/comparison_table.htm

Title: Re: Please help.....argghhhhhh
Post by t_h_b on Feb 19^th, 2004, 10:20pm

I experienced an isolated CH attack a year before the onset of what became almost daily multiple attacks.

The pain was the usual: stabbing, burning eye socket pain that bored into my brain. I thought that something inside my head had burst and was completely convinced that I only had a few minutes left before I lost consciousness and died. I kept repeating, "I wanted to die in my sleep, not like this."

Looking back, that attack was probably only a 6-7 and I can laugh about my reaction to it!

CH has many different personalities . I do hope you have something else like a sinus infection.

Title: Re: Please help.....argghhhhhh
Post by sportypants on Feb 20^th, 2004, 5:32am

Hello everyone,

In response to BobG's quote, this had remianed throughout the headaches, my natural instinct is to lie down, and if I do get up/move about, the pain is definately worsened, I have found that if I bury my head in a pillow and lie still I feel better after about 10 mins.

At this time of writing I have had no headache for 3 days but I can still feel there is a slight twinge (no pain at all) in the place the headache appeared, it seems like it has damaged the area where the pain was, the twinge is slightly to the right of the middle of my brow and just above the beginning of my eyebrow, just like a little 'flicker'.

I still have a really really heavy cold and am able to spit green mucus every hour or so from 'hocking' and am still holding out hope that the headaches were caused through my sinuses/cold.

I have also been taking nurofen plus for the last 3 days and am wondering if these are holding off the headache? Im going to continue taking the tablets until the twinge I described above goes.

Looking back at the symptoms I described in my first post, my eyes are weepy anyway as I have a slight eye infection (contact wearer, my underside of my eyelids are slightly rippled) and the blocked nose could be down to the really heavy cold?

Anyway still trying to get to the base of this and find out what the hells going on??

Once again thanks everyone for your support and benefit of experience, I really appreciate it :)

Regards,

JJ

Title: Re: Please help.....argghhhhhh
Post by t_h_b on Feb 20^th, 2004, 6:20am

Sportypants, if you're hocking green globs you might need more or different antibiotics, especially if they're coming from your lungs instead of your sinuses. Call your MD.

Hope you feel better.