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        Cluster Headache Help and Support >> Cluster Headache Specific >> Not Alone
        
(Message started by: supershrimper on Sep 4^th, 2006, 4:42pm)

Title: Not Alone
Post by supershrimper on Sep 4^th, 2006, 4:42pm

I've just found this great message board and feel for once that I am not alone.

I have been a CH sufferer for 2 years now, with the pain a contanst dull annoying ache always there, with extreme attacks that feels like I am being stabbed in the side of the head every 2 minutes, these attacks normally last for 3-4 weeks. I get a week or two free from the stabbing then it rears it's head again.

It was nice to see that there are other people suffering the same, pacing up and down, banging their heads against brick walls (literally), rocking, crying and feeling like their head is going to explode or their eyes pop out of their sockets.

My Nuerologist put me on antidepressents, the pain went, but they made me depressed, morphine makes me spaced out and has side effects of making my eczema and stomach hell to the point I can not cope, although the pain goes!

I was beginning to think that I will be like this for the rest of my life, with no one understanding.

I am going to be a regular visitor and hopefully some of other peoples words of wisdom will get me through the day.

Title: Re: Not Alone
Post by chewy on Sep 4^th, 2006, 6:48pm

Welcome home!

Title: Re: Not Alone
Post by thebbz on Sep 4^th, 2006, 7:53pm

Lots of other treatments out there to try. Sorry your getting hit.
Read the site when you can and try to get some rest.
Keep in touch
all the best
jb
wisdom [smiley=huh.gif]

Title: Re: Not Alone
Post by kevinpix on Sep 4^th, 2006, 10:39pm

Ever try oxygen? Ask your doctor about verapamil, helps with the shadows too. Good luck and welcome.

Title: Re: Not Alone
Post by georgej on Sep 5^th, 2006, 12:28am

Welcome.

Lots of great people here, and much good advice. Look around, get to know everyone, and read, read read.

Ask all the questions you'd like. We'll help in any way we can.

Many UK people here--I think you'll feel at home.

Best wishes,

George

Title: Re: Not Alone
Post by chopmyheadoff on Sep 5^th, 2006, 3:22am

welcome to the mad house matey ;;D

it all gets better from here - trust me !!

What meds has the doctor got you on ??
Has he mentioned imigran ??

its been a life saver for me.

Title: Re: Not Alone
Post by supershrimper on Sep 5^th, 2006, 7:43pm

Another visit to the GP today, suggested Beta Blockers, but I have been down that road before, and that didn't help. He gave me Remedine which is Paracetamol, dihydrocodeine tartrate. the dihydrocodeine for blocking the pain receptors, which is dulling the pain enough to be able to function, but awaiting another nuerologist appointment.

Does anyone know of what causes these damn CH and how do others cope with the pain, if indeed they can.

:-/ [smiley=bash.gif]

Title: Re: Not Alone
Post by Charlotte on Sep 5^th, 2006, 9:38pm

Only a partial answer, here...no, we don't know what causes these damn headaches.

Charlotte

Title: Re: Not Alone
Post by Jobette on Sep 5^th, 2006, 9:50pm

Welcome to "My place of refuge". :D
I am sorry that you are in hell but there are some good people there with you. ;;D Most of us have been doing this dance for a long time and some of you are in training. ;) And even though it doesn't feel like it right now, things will get better and you are not alone. :-*
As others have said read, read, read. With the information from this board you will have the ammunition when you visit your neuro, so that you can get your ammo to fight this thing. 8)
Keep us posted! Praying for pain free days! Melissa

Title: Re: Not Alone
Post by BB on Sep 6^th, 2006, 1:32am

on 09/04/06 at 16:42:19, supershrimper wrote:

I have been a CH sufferer for 2 years now, with the pain a contanst dull annoying ache always there, with extreme attacks that feels like I am being stabbed in the side of the head every 2 minutes, these attacks normally last for 3-4 weeks. I get a week or two free from the stabbing then it rears it's head again.

.

Hello

Sorry that you have this terrible headache. Hope you will find relief soon.

But reading your post I am a little bit concerned if you have CH or maybe something else. As far as I know, CH does not have a constant dull ache thats there always, and shouldnt have severe attacks every 2 minutes, plus the pain doesnt really feel like someone stabs you on the side of the head and unless you are chronic you should get more than 1 or 2 weeks pain free in between. Chronic CH is rarer than episodic, the ratio is something like 9-1.

There are other similar but different conditions such as Paroxysmal Hemicrania, Hemicrania Continua and SUNCT which have symptoms similar to CH but are different to CH and the medications for them are quite different too.

You may want to read and check the criteria for CH on the left side of the Board and on the www.ouch.org website and double check with your neurologist.

Its not uncommon for people to be misdiagnosed especially in the early stages so it pays to be extra careful.

Anyway, good luck with it all. Hang in there. Things will get better.

Annette

Title: Re: Not Alone
Post by supershrimper on Sep 6^th, 2006, 4:00am

Annette
I have looked up the symptoms to Paroxysmal Hemicranial and it does seem more like my pain.
Constant dull pain, with intense attacks every few minutes.
Thank you, you should be a Dr. ;)
It is nice to have support from everyone here, I would not wish this pain on my worst enemy.

Title: Re: Not Alone
Post by BB on Sep 6^th, 2006, 7:57am

You are most welcome Super. :)

My DH was misdiagnosed for several years with just about everything under the sun so I know what its like.

Keep reading everything you can and keep a diary of what your headache does on a daily basis, it will help greatly to understand what your body does and what triggers or helps with the condition.

Hope you will get the diagnosis confirmed soon and then the right treatment to make all that pain go away.

Painfree wishes to you, and prayers.

Annette

Title: Re: Not Alone
Post by Jonny on Sep 10^th, 2006, 3:57pm

No, your not alone!!

Title: Re: Not Alone
Post by chewy on Sep 10^th, 2006, 10:25pm

Quote:

Does anyone know of what causes these damn CH and how do others cope with the pain, if indeed they can.

Popular belief amongst the medical community is that CH is causedby a deformity of the hpothalamus gland.

How do people cope? In a million differant ways. Read. Read. Read. You will find a management technique or combinations of that will help you cope and manage both the pain and the lifestyle we are stuck with.