Hi, I have finally cracked, and in desperate need to talk to people who understand what I am going through...lol

I have been suffering with CH since i was 15. my first lot lasted 18 months! I then went episodic. I am now 21 and only got diagnosed 5 months ago when the constant pain all started again...All I want to do is cut off my head  :'(
I had to leave school 2 months early when all this started as I couldn't cope. Very scared I will end up having to leave my job if it carries on, as I cant keep calling in sick at the last minute when one decides to rear its ugly head...

I currently take sumatriptan for the attacks, and I am taking adipine and tramadol for the constant pain in between attacks. If anyone has any suggestions as to how I can relieve the constant pain, I would be very grateful!

xxxx

Greetings Lemononahill!
Welcome to our nasty club, but we're glad you found us. 

Hopefully you already have a good neuro doctor so you can rule out everything else.  If so, see about oxygen therapy, sumatriptan injections and good prevent.  Those Imitrex tabs are basically worthless and taking too much can cause rebound HA. They are too slow when aborting a cluster.  If you don't have a good doc, see about getting one so you can get on a preventative drug to calm the beast down during your cycles.  I'm sure you're get much better feedback from others, but all I can say is read this entire site and you'll learn a ton, plus meet some incredible people.  We all know what you're going through.

Hang in there and I wish Pain Free Days!

Cheers,
Chad 

I tried the injections, but they made my chest all tight and i couldnt breath and really didnt like it. thats why i take the tablets, even though they are less effective.

I am in the UK so have only managed to get to my local GP as no one will send me any further. I went to all sorts of neurologists when i was younger, and they kept diagnosing me with stress headaches, and giving me ibruprofen...obviously it didnt work.

I will speak to my doctor and see what else we can try. not got an appointment till next week though...so annoying.

I am looking forward to a pain free hour at least! lol

hey!
look at the imitrex tip on the left it works wonders!! beside o2 its a great abortive!! and if u dont use the whole vile might stop your chest tightness
good luck ;)

You have an excellent support group to help guide you thru the complexities of your health care system:

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The sumitripan injection does produce the tightness you noted but medical literature says this is NOT a sign of heart problems, etc. This med & form still remains the single best abortive we have but there are other meds in this class which are effective but lacking in this effect.

Our collective experience is that most general practice docs simply lack training & experience in dealing with complex headache disorders. There are, however, some excellent sources of care available to you--but you need to push to gain access.

====
Bit messy but a mix of content which afford some leads:

Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
===============================

City of London Migraine Clinic [and other types]  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

thanks for the help. wil speak to my doctor  about getting referred to someone who knows more about what i am going through.

Quote:

referred to someone who knows more about what i am going through.

A physician gets exactly 5 hours of trasining in medical school on headaches.  5 hours!!!  that includes all types of headaches.  YOU must be your own best advocate for this condition.

Study here, read, ask questions. And then read some more. And then ask more questions.   All of us, here.. (together)  have 1000's of years of experience in dealing with CH.  I've been chronic for 23 years now.  I've found what worked for me, somewhat..but not without trial and error and years of pain and suffering.

I don't have the ability to call internationally, but I would so love to talk to you.  One on One.   :-/

Linda

 

Like Linda said....if you read all of what is available on the site and ask all the questions you have, odds are you will be able to educate the very caregivers you come in contact with.

There is something quite satisfying in being able to participate in your treatment, augmented by the assistance of a qualified Headache specialist of course.

All the best  :)

Iddy

i am just so bored of having to explain to every doctor i see what i am going through. and all of the idiots ask me if i have tried paracetamol!! drives me mad!

i have been looking through alot of posts, and they are helpful for the attacks. however i really would like to know what i can do to relieve the constant pain i have 24/7. i cant seem to find any info on that. or i might just be a bit blind and missing something... :-/

lemononahill wrote on Jan 13^th, 2010 at 7:53pm:

i have been looking through alot of posts, and they are helpful for the attacks. however i really would like to know what i can do to relieve the constant pain i have 24/7. i cant seem to find any info on that. or i might just be a bit blind and missing something... :-/

While clusters have been diagnosed, constant pain isn't characteristic concerning clusters, not much would be mentioned other than what are shadows or the feeling of an oncoming attack lowly percolating, which may materialize into an attack or sometimes can just pester quite awhile and subside.  A constant 24/7 pain may be another type of headache going on along side to be treated differently. 

Hi & welcome,

You may be suffering from what we call shadows. Seek out posts referring to shadows on the board and see if these stories relate to your own experience.

I can abort an attack within 5-10 mins using oxygen at a flow rate of 15lpm with a non rebreather mask.


Lefty...!