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Finally, I'm no longer alone.

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#1 Sat, 08/11/2014 - 20:59
maps
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Joined: 08/11/2014 - 20:26

Finally, I'm no longer alone.

Firstly, I would like to say thank you to everyone involved in this great site. After 10+ years of misdiagnosis of a recurrent sinus problem, I stumbled upon the site late one night during (what I now know is) one of my CH bouts. 

After about 5 minutes of reading, my eyes welled up and the relief I felt was indescribable. My symptoms and pattern of my pain fit perfectly with episodic CH. I've spent the last decade of my life wondering what was wrong with me and why I had been experiencing such excruciating pain from what others seem to take in their stride. 10 years of sinus treatments, scans and pain pain pain. 

Well, the next morning I phoned my GP and was given sumatriptan nasal spray. My evening faceache appeared and I used it. It disappeared in about 25 minutes. I was elated. I used all 4 doses and on the third day went back and requested the imitrex injections. My faceache that evening went in about 4 minutes. 

Absolutely amazing. I walked around elated. 

I went back to my doctor after I'd used those and told him it worked and asked for another 4 doses. He agreed but said that this would be my last injections. He was now prescribing me Zomig nasal spray as the imitrex injections were "very expensive". He has also refered me to a neurologist. I have read similar experiences on the forum but wondered if anyone had advice on how I could persuade the doctor to continue the injections? I should say that my doctor had little to no knowledge of CH and I really had to convince him in order to get the treatment. I'm in Stirling. 

I have also noticed that instead of having on average two faceaches (my cluster attacks start on the left side of my face just below my eye and spread up around my eye and as far as my ear) every day which last each for about 2 hours, since starting the sumatriptan I now have around 4 every day - 2 which I can treat with imitrex and 2 which I need to manage on my own. I have read on the forums about rebound headaches. Is this what I am experiencing? 

I am so glad to finally know what this hell is and to know that I am no longer alone. Thank you again and I would appreciate any advice you can give me. 

Stephen.

 

 

 

 

Sun, 09/11/2014 - 11:50
Phil
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Last seen: 4 years 5 months ago
Joined: 26/02/2014 - 17:02

Hi Stephen and welcome.
To get more sumatriptan injections, you will need to be as much of a pain as your headaches to your Doctor; for they are more evil than Cluster Headaches. They refuse the correct medication on the grounds of cost, even though their drug book (BNF section 4.7.4.3) states subcutaneous injections, leaving us in extreme pain.

Choose your Neurologist, you have the right, The trustees will point you in the right direction. Also, oxygen (100% 12 - 15 lpm) works well.
-Your Doctor will wriggle out of prescribing that too.

You'll come to hate doctors as much as me.
(If 'hate' is a strong enough word)

Good luck. Wink

_________________________________________________________________________ Yeah I know, my coat's already on.

Sun, 09/11/2014 - 23:00
paul
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Joined: 31/10/2014 - 20:02

hello

+1 on the comments above

Mon, 10/11/2014 - 08:04 (Reply to #3)
Dorothy
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Joined: 19/02/2014 - 10:16

Ring the helpline Paul as they can advise you on who best to be referred to in your area and also if you have a look at the downloads section there's plenty of info to print out and take with you to your GP while you wait for a neuro appointment.

Dorothy

Mon, 10/11/2014 - 08:07 (Reply to #4)
Dorothy
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Joined: 19/02/2014 - 10:16

Sorry I meant Stephen. Using my phone - not good.

Mon, 10/11/2014 - 08:20
Phil
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Joined: 26/02/2014 - 17:02

Pity we can't download a gun. :bigsmile:

_________________________________________________________________________ Yeah I know, my coat's already on.

Mon, 10/11/2014 - 16:55
maps
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Last seen: 6 years 3 months ago
Joined: 08/11/2014 - 20:26

Thank you all for your replies. I spoke to Mike today on the phone which was most helpful and now have a plan of action. Thank you.

Tue, 11/11/2014 - 16:05
duetto
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Last seen: 4 years 10 months ago
Joined: 26/02/2014 - 14:54

maps please let us know the outcome, as this could happen to any of us at any time, if doctors start penny pinching.

I use a ferry on a frequent basis and have to declare I am carrying oxygen, not a problem till yesterday now need to get a doctors letter re the oxygen, spoke to GP she wants £20 for a few lines on a bit of paper, prevous doctors never charged for short notes. When I asked why so much she said solictors charge a lot more for  letters, they are not part of my normal work.

Wed, 12/11/2014 - 12:50
Val
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Last seen: 21 hours 57 min ago
Joined: 21/03/2012 - 15:16

David

What do the ferry company do about caravans with gas bottles, or camper vans for that matter?  Or campers with those little camping gaz stoves, do they have to provide a note from their gas supplier?  It seems very discriminatory behaviour to me.

 

Wed, 12/11/2014 - 18:26
ElizabethK
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Last seen: 16 hours 41 min ago
Joined: 26/02/2014 - 14:26

Sorry don't mean to thread jack, but you make an interesting point Val!  A few years ago I had to declare to P&O that I was carrying medical O2 when I went to France, their Terms and Conditions stated that all compressed gas should be declared as does the ferry company to take me to Scilly next year.  I wonder if this is Fire Safety as when I went to France I had to place the car in a particular place on the ferry, they seemed to need to know exactly where the O2 was!

Wed, 12/11/2014 - 18:27
ElizabethK
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Last seen: 16 hours 41 min ago
Joined: 26/02/2014 - 14:26

Oh and yes I did have to have a covering letter from my Consultant not GP!

Thu, 13/11/2014 - 22:31
duetto
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Last seen: 4 years 10 months ago
Joined: 26/02/2014 - 14:54

 

Before i would mention it when booking and it was noted end of story, now need a letter. Do not want to get turned away at the port so got to pay it, not as if doctors are poorly paid do they really need to hit people out of work with rip off charges.

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