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
Getting some help in the UK which drugs? (Read 1507 times)
Madjap
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 5
Getting some help in the UK which drugs?
Feb 27th, 2012 at 6:17am
 
My son has been suffering form clusterheadaches for a few years, they come in a cluster over 2/3 weeks then he is pain free for months.   He has just been going through a bad 3 weeks and we are trying to find the best way to help. I am confused about the best medicattion to ask for as every time I read an article it seems to recomend a different drug.  He has an appointment today and I want to give him some suggestions to ask his GP for.  I don't suppose he will get oxygen from him so what else should ford
Back to top
  
 
IP Logged
 
wimsey1
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 2457
MA
Gender: male
Re: Getting some help in the UK which drugs?
Reply #1 - Feb 27th, 2012 at 7:33am
 
Why do you suppose he can't get O2? Given the short duration of his cycles so far, it seems the best choice. And it is the best choice when there are defined cycles. You could ask for a prednisone taper. Some of us have found it helps and can bust early cycles. Generally though it only works long enough for a good preventative to kick in. Verapamil is the leader right now but other meds are on the list: lithium, topimirate, and a variety of antiepileptics. I would hope your sons doc knows something about CHs, although most do not. It would behoove you to bring some info with you just in case. Check out the tabs at the left and print any articles you think are helpful. Let us know how the visit goes. God bless. lance
Back to top
  
 
IP Logged
 
Madjap
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 5
Re: Getting some help in the UK which drugs?
Reply #2 - Feb 27th, 2012 at 8:19am
 
Thanks Lance,
The doctor that he saw last time, didn't know anything about oxygen and CH, so I needed some ideas of the best things to ask for.   There is a doctor at this practice who is a fellow suffer but he hasn't been able to get to see him since.   I have a list now for him to take, so we shall see what happens

Thank you
Back to top
  
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Getting some help in the UK which drugs?
Reply #3 - Feb 27th, 2012 at 8:51am
 
First, make contact with your excellent support group about issues with your health care system.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
====
I understand that you have the right to be referred directly to a headache clinic, by-passing your local docs. An issue to bring to the support group.

The messages we receive fromthe UK are fairlh consistent re. the low level of knowledge/skill among local docs on Cluster. Good reason to make a move ASAP.

Print the PDF file, below. Give to you present doc. He will recognize the source and it gives the most current  evaluations on medical treatments.
Back to top
  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
IP Logged
 
Madjap
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 5
Re: Getting some help in the UK which drugs?
Reply #4 - Feb 27th, 2012 at 5:32pm
 
The Doctor we saw today wants to know who diagnosed the CH and said all the medications we were talking about were for chronic CH sufferers.  She said there was no way she would prescribe oxygen and that you would need a licence or something to store it????
My Son only has attacks once or twice a year. I know after reading some stories on here that might not seem too bad but when its happening its devastating for him, his family (two small children) and partner.  he hasn't been able to work apart from an odd day, for three weeks, this puts a lot of pressure on his father(business partner) who has been trying to complete building work by himself.
He also has sinus pain so the doctor wants him to have treatment for that before considering CH.   I think what happens is that the pain goes away before he gets a proper diagnosis, so this time we will have to pursue a diagnosis whatever happens.

Thanks for your suggestions
Back to top
« Last Edit: Feb 27th, 2012 at 5:35pm by Madjap »  
 
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: Getting some help in the UK which drugs?
Reply #5 - Feb 27th, 2012 at 6:13pm
 
The doctor you saw today is an idiot.
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
IP Logged
 
wimsey1
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 2457
MA
Gender: male
Re: Getting some help in the UK which drugs?
Reply #6 - Feb 28th, 2012 at 8:39am
 
That is so sad, and so uninformed. Push to see the doc you said was a fellow sufferer, no matter how long the wait. Or see one of the recommended docs on the OUCH list. Again, no matter how long it takes. In the meantime, employ the various OTC interventions we've described: melatonin, energy drinks, Vitamin D3 regimen, that sort of stuff. Sorry that happened. God bless. lance
Back to top
  
 
IP Logged
 
Paul UK
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 4
Re: Getting some help in the UK which drugs?
Reply #7 - Mar 1st, 2012 at 6:42pm
 
Hi Madjap

I'm in the UK too.  If you are anywhere near London I suggest your son self refers to the London City Migraine Clinic -- migraineclinic org uk.  My first episode was three years ago, and whilst I was given the Imigran injections very early on by my GP, I didn't get the full range of treatments which should be given to a CH sufferer.  The visit to the London clinic provided me with a letter which spelled out to the GP what I was suffering from and what treatment I should be given.

Despite a three year gap between episodes that letter was still on file when I went back a few weeks ago, and the GP happily gave me what I need, and on repeat prescription.

For information, I'm now on 160mg of Varapamil three times a day, and whilst it took about three weeks I'm now pretty much pain free. 

Your son needs to take control and be firm with the GP - demand the injections at the least so that the pain can be dealt with in an attack (read the Imitrex tip to the left - it works).  If he can travel to London make an appointment at the clinic, then he will be on the road to having the treatment he needs spelled out for the GP's.

Good luck. Paul
Back to top
  
 
IP Logged
 
Madjap
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 5
Re: Getting some help in the UK which drugs?
Reply #8 - Mar 2nd, 2012 at 5:23pm
 
Thanks Paul, we are just outside London so I shall certainly look that clinic up. He seems to be over this bout now but I will make him pursue it, so that next time we have the medication available when he needs it.
Back to top
« Last Edit: Mar 2nd, 2012 at 5:24pm by Madjap »  
 
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!