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#1 Sat, 25/01/2020 - 13:39
Globaldavelewin's picture
Last seen: 1 month 20 hours ago
Joined: 13/09/2019 - 10:01

Help needed

I'm sure this post has been covered on many occasions, I have been to the doctors more times in the last 12 months than I care to imagine. Finally a few months ago they put me on a repeat prescription of verapamil and the sumatriptan injections which are amazing, unlike most my attacks occur about 3 times a day so nothing like some sufferers on here although still excruciatingly painful. 

now I know the injections can only be taken twice in 24 hours but I never have enough and they won't let me have a small stockpile of them. I have to go all weekend now without them and have nothing knowing that tonight I will get more attacks. 

has anyone got any advice on what I can do to try and persuade the doctor whom I might say had to look into clusters at first. I have a neurologist appointment in February and hoping he will help. 




Wed, 29/01/2020 - 12:53
Last seen: 2 days 7 hours ago
Joined: 26/02/2014 - 14:26

There is a link on this site somewhere to the NICE Guidelines which sets out the treatments for CH and that you need 2 injections per day.  GP's may not like this due to cost, but the injections should not be withheld due to cost.  A letter from your Neuro could help, or, a word with your Practice Manager, and if no joy at that point a word with the Prescriptions advisor at your Local CCG (Clinical Commissioning Group) can bear fruit!.

Have you got oxygen?

Fri, 31/01/2020 - 09:50
Last seen: 3 weeks 5 days ago
Joined: 12/11/2019 - 09:20

I'd Definitely print off NICE Guidelines for Cluster headaches, as I did after 3 yrs of split head Agony, then hand to your GP for referral to Neurologist to get Oxygen prescribed. Oxygen.. It Is an absolute Godsend for attacks. Good luck x

Thu, 06/02/2020 - 11:30
Last seen: 2 weeks 6 days ago
Joined: 26/06/2019 - 15:45

Hi Dave. I think most neurologists are aware of issues with GPs not prescribing adequate treatment. In the letter from my neurologist to my GP, he included some fairly strong wording along the lines of "It is considered unethical to withhold treatment, please ensure an adequate supply of sumatriptan". 

I suggest you mention to your neurologist that you haven't been given enough medication to last over weekends, and ask them to specifiy a larger number of injections. 

Daniel - Episodic CH

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