Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
Another newbie saying hello! (Read 2004 times)
lisa1973
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 16
Portsmouth, UK
Gender: female
Another newbie saying hello!
Jun 24th, 2008 at 2:14pm
 
Hi all

Been lurking for a few weeks now and have decided the time is right to join up, say hello and make a donation to the site!

I am a 34 year old single mum to two boys who lives in the UK.

Been suffering for 17 years with "headaches" which had been diagnosed until recently as migraine.  I have always questioned the diagnosis due to not having any sickness/vomiting, auras etc nor have I ever had any success whatsoever with what seems hundreds of different preventers, painkillers or anything else which the doctors threw at me.  

All except Imigran injections, they were the only thing to relieve the pain but the doctors stopped those because I was using too many.

Eventually I just didn't bother going to the doctors any more as they more or less just said get on with it.

I got pregnant at the end of 2005 and the headaches disappeared druing the pregnancy until my son was born and was about 6 weeks old.  Then they came back and were unbearable so I went to see my GP who referred me to the Neurologist.

Had MRI scan and was told I had a pineal cyst which was 19x13x11mm but wasn't the cause of the headaches, the Neuro was pretty horrible to be honest but the doctor just said let him do his thing and when he is finished we can always get a second opinion.  When I asked him if the cyst wasn't causing the headaches what was he replied "at least you know its nothing life threatening".  Really helpful.

A few weeks ago I was in so much pain I thought I was going to die and ended up at the NHS out of hours clinic who sent me to the out of hours GP who diagnosed Cluster Headaches?  My GP agreed and started me on Verapamil but wouldn't supply me O2 and after changing doctors twice I found a GP who has given me O2!

Got an appointment with another Neuro in July, hope this one is better than the last?

My symptoms were on the left side until a few weeks ago when I started getting feelings like they were going to start on the right! Then bang I had a hit on the right side along with a droopy red eye and a stuffy nose.

My symptoms on the left, excrutiating pain around my back molars, above my eye/eyebrow, under my eye/cheek, occasionally into my ear, corner of my eye/nose, the feeling like a poker has been stabbed through my eye into my head, feelings of pressure, along with a runny/stuffy nose, my eye goes red and sometimes waters but I have never seen or been told it droops?

On the right I get the feeling that one is going to start but it only actually has on a couple of occasions, my eye droops and goes red but doesn't run and my nose gets stuffy and also doesn't run.

I have O2, Imigran injections and am on Verapamil (80mg x 3).  Doctor won't increase Verapamil until I have seen the Neuro.

So thats where I am, sorry its so long!

Lisa
x
Back to top
  
 
IP Logged
 
maalstroom
CH.com Old Timer
****
Offline


''Dance to my tune''....
the hell I will!


Posts: 491
the Netherlands
Gender: male
Re: Another newbie saying hello!
Reply #1 - Jun 24th, 2008 at 2:35pm
 
Do not be sorry, you just need to vent...just like we all do when arriving here I guess.
Well, all the wonderful people here will stand by your side with phantastic advice.
Take advantage of it!
Hope you are painfree soon.
Back to top
  

...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Another newbie saying hello!
Reply #2 - Jun 24th, 2008 at 3:42pm
 
Make contact with this group at once! Solid organization which can help you.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
Back to top
  

Bob Johnson
 
IP Logged
 
Melvyn
CH.com Veteran
***
Offline


We all need to relax sometimes,
somehow.


Posts: 105
|Yeovil|England|europe|
Gender: male
Re: Another newbie saying hello!
Reply #3 - Jun 24th, 2008 at 4:57pm
 
Hi Lisa,

you mentioned NHS so I guess you're in Britain somewhere. I'm in the South West and found my GP very unhelpful.

When I first had CH he gave me some migraine tablets which were as much use as the proverbial chocolate teapot. It wasn't until my third cycle that I found this site and worked out that it was CH. When I saw my GP I was more questioning but didn't mention CH. He then told me that he had worked out that it was CH in my first cycle but that as there was nothing that could be done for it he didn't tell me.

Eventually I asked for O2 and Verapamil but he refused. Then I demanded a referal to a neuro - Mr. Fathers - he had a friend who is a GP and also suffers from CH.

He wrote a fantastic letter to the GP - really gave him hell - and told him that during my next cycle he should prescribe Verapamil, O2 and imitrex.

I found that Melatonin has worked for my last two cycles and usually within 2 - 5 days.

So get to a neuro as soon as poss.  - tho' with the NHS that can take a few months - best of luck and pain free days.

regards,

Melvyn Smiley
Back to top
  

Melvyn
 
IP Logged
 
Melvyn
CH.com Veteran
***
Offline


We all need to relax sometimes,
somehow.


Posts: 105
|Yeovil|England|europe|
Gender: male
Re: Another newbie saying hello!
Reply #4 - Jun 24th, 2008 at 5:00pm
 
Hi again Lisa,

just thought - have you read this - told meso much about CH and the available remedies.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

regards & PF days,

Melvyn Smiley
Back to top
  

Melvyn
 
IP Logged
 
lisa1973
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 16
Portsmouth, UK
Gender: female
Re: Another newbie saying hello!
Reply #5 - Jun 24th, 2008 at 5:21pm
 
Hi guys

Thanks for the welcome and the advice, will check out that link Melvyn, don't think its one I have seen before?

Not had to wait long for my neuro appointment not sure if thats cos I was already under one for my cyst or not? Have asked to see a different one though so will just have to wait and see how it goes!

I have joined OUCH UK what a fantastic organisation, have helped me alot over the last few weeks but felt guilty lurking and reading all the info on here so thought I would join, so I have.

Made my donation via PayPal, bit of a nightmare as I couldn't remember my password but got there in the end lol

You both take care and I am sure I will bump into you around the boards at some stage

Lisa
x

Back to top
  
 
IP Logged
 
kika
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 122
Re: Another newbie saying hello!
Reply #6 - Jun 24th, 2008 at 9:57pm
 
hi

i am so sorry to hear that you are going through this without the support of a spouse and while raising your children. you have my complete empathy.
hope you get some useful advice on here to help you manage your pain.
take care
Back to top
  
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!