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Recent CH diagnosis after 12 years. So many questions!

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#1 Sun, 13/04/2014 - 11:52
harrieo
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Last seen: 6 years 1 month ago
Joined: 30/03/2014 - 07:45

Recent CH diagnosis after 12 years. So many questions!

Ive had the same headaches since i was 15. Im now 27. I had a 3 year break and now they are back with avengance. Drs treated me for severe migraine which i never believed i had. I only discovered what CH is 5 weeks ago as Drs told me i didnt have it, saying "you'd know if you had CH". The fact that i was often carried into the doctoors screaming at the top of my lungs by my now deceased father did nothing to change the migraine diagnosis. My father never believed this either and i wish i could tell him he was right. I'm having a private neurology consultation in a month as i can't wait till origional NHs appt in september. How do others find Gp support?. He agreed i had CH, ordered oxygen, gave me zomig nasal sprays and put me on 160mg verepamill but hasnt asked to see me again.Should i be on a higher dose as no change?. He also refused to acknoledge that this is the same headache and when asked for a note for college he replied that as he couldnt edit an existing letter then his life would be a lot easier if i left it (do they have any idea how difficult our lifes are?). I feel incredibly alone and 7 weeks in the severity of my headaches has not decreased. Does anyone know how long my cycle may last?. I'm holding down a part time vet receptionist job(they have oxygen) but im scared to go out or sleep, falling behind at college, and have become very depressed. I am a recoving alcoholic and went to rehab 2 years ago.  If I'd known alcohol was a trigger im sure life would have been different. I began drinking when i was 17 as my quality of life was nonexistent, nobody believed how much pain i was in and i just stopped caring about life( I blame myself not CH but this was a factor). Between the ages of 17 and 25 i made 5 suicide attempts. The "suicide headache" name scares my mother yet my dr has made no comment on my history. Do any other recovering addicts have similar experiences?. I got sober,went to college, volunteered at the dogs home, got a job in the vets, had offers from all uni choices to study animal behaviour and now i feel it was all for nothing. I'm sorry this is sooooo long and i understand if nobody comments but it was thereputic to write down my feelings about CH.

H.O'grady

Sun, 13/04/2014 - 12:25
Val
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Last seen: 5 days 7 hours ago
Joined: 21/03/2012 - 15:16

Hello Harrie

What a story - but sadly its very familiar where CH is concerned.  We seem to have an eternal struggle with GPs, but yours has done more than a lot others do.

Verapamil has to be taken in a particular form - the standard BP version, not the slow release (SR) or modified release (MR) - and at different dosage levels to that prescribed by your doctor.  The suggested start dose for a CH patient is 240 mgs a day (80mgs x 3 times a day), going up to a ceiling dose of 960mg.  you should have an ECG before starting the regime and another before each increase in dosage.  The doses increase by 80mg every two weeks (e-mail to info at ouchuk.org for the full detailed regime).  I don't understand what your GP means about changing a letter already written?  And don't give up college just because your GP is apparently too lazy to help you!

Glad you have an appointment with a neuro, may I ask who it is and which hospita?  You can either answer the questions I've posed on here, or call our helpline for a good chat about treatments and how to get your GP to assist you a little better. 

Hang on in there, you're on the right road.

Val. ;)

Sun, 13/04/2014 - 12:51
harrieo
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Last seen: 6 years 1 month ago
Joined: 30/03/2014 - 07:45

Thank you for the responce. The information about Verepamill is very helpful. I have not had an ECG which may be why the dose hasn't been increased. I'm seeing Dr Luke Bennetto at the Spire hospital in a month.My doctor origionally wrote a letter to college saying i had migraines and needed a couple of days extension to complete my work.Two weeks later I asked for an updated letter. He couldn't edit the letter on the computer and basicly couldn't be bothered to re-write a couple of paragraphs about my new diagnosis. I was in pain at the time and he told me his life would be easier if he didn't have to write a new letter. This didn't go down well at college and arranging extensions became a huge hassle that i struggled to sort out whilst having 8 attacks a day. It was the attitude that struck me but i agree that he has sadly been more helpful than some. Ive not called the helpline yet but will do. Thanks again Val.

H.O'grady

Sun, 13/04/2014 - 16:09
Val
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Last seen: 5 days 7 hours ago
Joined: 21/03/2012 - 15:16

Harrie

I would suggest you speak to the disability officer or equivalent at the college and explain to them just what has gone on with your GP.  I looked up Dr Benetto and he lists headache as one of his specialities.  Let us know how you get on and make that call to the helpline! 

 

Val. ;)

Fri, 18/04/2014 - 09:57
Dorothy
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Last seen: 22 hours 2 sec ago
Joined: 19/02/2014 - 10:16

Hi Harrie - sorry to hear about your GP's unhelpful attitude.  At least he got you the oxygen and put you on verapamil!  Hopefully when you've been for your appointment with the neuro you'll also have a prescription for sumatriptan injections which work much quicker than nasal sprays.  Episodes of attacks last for different periods of times for everybody.  There's no way of telling how long yours will last.  It's a matter of getting it under control and I hope yours will be well contolled soon.  GPs seem to think writing letters is a huge ask and often charge quite a lot for doing it.  Why not ask the neuro to provide something to prove your diagnosis or ask to be copied into his letter to your GP.  Good luck!

 

Dorothy

Sat, 19/04/2014 - 01:17
MartinL
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Last seen: 3 months 3 weeks ago
Joined: 26/02/2014 - 14:26

Hi Harrie

Thank goodness you've found Ouch, this is the best place for help and information. You're not on your own.

Like you I was treated for migraine for 13 years and even after I'd had a correct diagnosis (finally) I still came up against unhelpful GP's.  Don't hesitate to change your GP, you're entitled to go to any within your area, or even within the practice you're at now. Ask for an appointment to 'interview' a prospective GP (I have done this. believe me) before you register with him/her, find out what they know about clusters, the younger ones tend to be more knowledgeable in my experience, the older ones didn't seem to learn about clusters in their training and often aren't willing to learn from one of their patients!  If I had your GP I would be looking for a new one, I think.

Anyway good luck with the neuro appointment.

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