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Hello another from the UK........ (Read 1515 times)
kelt5
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Hello another from the UK........
Feb 18th, 2014 at 11:57am
 
Hi,
I too am from UK.  I have suffered what I had been told by various doctors as 'cluster migraines' since 2003. Twice I was tried on preventative tablets the names I can't remember. All medics informed me at the time this was all that was available except for Zolmitriptan.  I am allowed 24 x 2.5mg monthly. I have very few gaps in my attacks so need to supplement with paracetamol.  After hearing a small snippet of a radio programme mentioning CH I decided to research.  I truly believe I have been wrongly diagnosed.  I have had a CAT (?)  scan about 3 years back so I know it is not anything else. I left a career I loved and a very fit and happy lifestyle behind me because my condition and attacks overtook my entire life.
After finding all this wonderful information here, on the NHS site and at OUCH I am determined to nag my GP into taking notice of me.  Tomorrow I will be taking copies of the symtoms, diagnosis and treatment information I have found. 
Thank goodness their are sites like this who have given me hope that somewhere in the future I might just get a little of life back.
I will keep you posted.
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Bob Johnson
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Re: Hello another from the UK........
Reply #1 - Feb 18th, 2014 at 1:14pm
 
If you have not discovered your excellent support group, please contact them.

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Bob Johnson
 
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maz
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Re: Hello another from the UK........
Reply #2 - Feb 18th, 2014 at 5:52pm
 
Hi Kelt5, welcome to your new family but sorry you had to find us.Where abouts in the UK are you?
On the left of your screen is a tab "cluster quiz". That will help you know in your own mind if you have CH, but there are many headache conditions which mimic CH so a proper diagnosis is vital and your GP should refer you to a neurologist for that.

If it does turn out to be CH there are preventatives and abortives which help a great deal. Verapamil, sumatriptan, lithium to name but a few. Also on the left of your screen is a yellow highlighted tab "oxygen info". Pure 02 is most peoples favourite abort method but it has to be done right. Read up on it and it will tell you all you need to know.I have only had my 02 for 2 days, but it is brilliant. Paracetamol will not help CH, so  save your money. Sorry to tell you this but if it is CH there are NO pain remedies - not even morphine.

Also, try the energy drink tip. At the very first sign of pain (don't wait till it ramps up), chug down a redbull or monster drink, really fast. It's the combination of caffiene and taurine in a sudden hit that does the trick, so any energy drink with those ingredients will do. It doesn't work for every one, but many folks here swear by it.

Finally, look for posts by Batch about his vitamin D3 regime. It's an anti inflamatory regime of vitamins that has taken this site by storm with huge success. Batch is a brilliant man and I'm sure he won't mind if you send him a PM. He will work with you and tell you all about it. But you must have the relavant blood tests done to make sure you stay safe.

We all know the pain and frustration you feel, but when you get a diagnosis and meds sorted out you will learn to balance life with this monster. Read all you can on this site and pass on what you learn to your GP. Most of them know diddly squat about CH and the other serious headache types. I have learned so much from every one here and been able to help my GP along with treatment methods. Hope this helps
Maz.
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mrs mac
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Re: Hello another from the UK........
Reply #3 - Mar 6th, 2014 at 11:47am
 
hi there, there is a meeting planned for 6th April in Shrewsbury, see below for details, if you are nearby and are able to attend, i can honestly guarantee you will find it very informative, and you will get to meet other clusterheads!!

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Shrewsbury Meeting - April 6th 2014 | OUCH(uk) | Organisation for the Understanding of Cluster...
ouchuk.org

phone the uk helpline too for more information on CH and the meeting

01646 651 979

Sandra x
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Bob Johnson
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Re: Hello another from the UK........
Reply #4 - Mar 6th, 2014 at 12:08pm
 
Most of the messages we receive from the UK complain about the poor quality of care from local doctors. It appears that they receive poor/inadequate training in this complex area of medicine.

Your local suport group can guide you re. law which, we understand, allows you to move directly to headache speciality clinics, by-passing local service providers.
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Bob Johnson
 
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mrs mac
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Re: Hello another from the UK........
Reply #5 - Mar 6th, 2014 at 12:14pm
 
Bobs right, through the NHS Choices website there is a Choose and Book Service!!

Please call the helpline for more information regarding this, we can also give you info on hospitals that are part of this

Sandra x
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