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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Treating my CH

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Treating my CH (Read 6281 times)

Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Treating my CH Reply #25 - Apr 11^th, 2011 at 11:59pm Please don't take this wrong, but your Doctor obviously knows little about CH. In your own best interest, educate yourself about CH and treatments. Take Batch's advice and contact OUCH/UK. Don
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ICY CH.com Junior Offline I Love CH.com! Posts: 34 Rochdale UK Gender:	Re: Treating my CH Reply #26 - Apr 12^th, 2011 at 7:41am the neurologist has written to my GP and it is from this letter that the Dr is prescribing the neuro here obviously doesnt do the prescribing herself which I find a little odd, will go to the GP in the morning and then contact OUCH when I get back, I am so confused at the moment.
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ICY

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Re: Treating my CH
Reply #27 - Apr 15^th, 2011 at 11:50am

ARGHHHHHHHHHHHHHHHHH

Finally got to see a doctor, unfortunately it was not my regular GP, and after today is not someone I will ever see again after they cancelled my appointment on Wednesday, I asked why the sumatripan was not on my prescription, his reply is he doesn't know why I have been advised to use Sumatripan on a regular basis he has given me 2 pre filled syringes of Sumatripan at 5mg and said maybe tablets would be better but not to be used regularly.

He said that Sumatripan shouldn't be used on a regular basis as its not safe for regular use and he cant understand why the neurologist has recommended using this, I told him that there are lots of people using this on a regular basis, he seems to find this unusual, and said there is no way can use this drug more than a few times a month, he was arguing with me saying both me and the neurologist were wrong, why is it so damned difficult to get simple treatments, its not only this but I have also been told by both a GP and a neurologist that O2 is opne of the best treatments but neither will prescribe it, the both tell me to go to the hospital which wouldnt work as it takes half hour to get to the hospital, there is then between a 2-4hour wait for treatment, the other issue is when I have CH I cant drive so how am I supposed to get to the hospital, none of them seem to understand how impractical going to the hospital is to get O2

The other thing he said when I said I have just started on Verapamil, was but that not used for CH thats for High blood pressure.

Rant over, time to go bounce my head off a wall, I don't need this on top of the actual CH's I am finding it hard enough to deal with this, time to ring OUCH NOW Sad

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ICY

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Re: Treating my CH
Reply #28 - Apr 15^th, 2011 at 2:26pm

Message left with OUCHuk to contact me as it was out of office hours, I have been to get a copy of the letter the neurologist sent the doc and it says

Quote:

Patient has developed CH, would advise that he be commenced on Verapamil, titrating the dose even up to 480mgs daily and sometimes even higher doses are needed. Furthermore, for the acute episodes I would advise Sumatripan subcutenous injections 6mgs, oxygen therapy is also an option

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Mike NZ

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Re: Treating my CH
Reply #29 - Apr 15^th, 2011 at 6:13pm

There is an OUCH meeting in Liverpool (not too far from you in Rochdale) on May 15th.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

This will be a great way for you to meet up with other people from the area with CH and to find out who the best doctors are to see in your area to get the treatment you need.

It also sounds like the GP you saw is clueless with CH. It's amazing how he could think that they know more than the neurologist!

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ICY

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Re: Treating my CH
Reply #30 - Apr 16^th, 2011 at 3:26am

Unfortunatly I will be in Florida then, we fly out on the 12th May, I am shocked at what he said to me, firstly he didnt understand why I had been prescribed Verapamil as that is for BP I told him if it also used as a recognised treatment for CH, he then said that the Neurologist will only have meant to use the sumatriptan a maximum of a couple of times a month, when I told him this is not what the neurologist said he told me she was wrong Shocked

I will make sure I never have to see him again, I am grown man @ 6ft & 17st and afraid of nothing but he had me reduced to tears yesterday, I really am struggling to cope.

I have been trying to find any evidence that it shouldn't be used on a regular basis and have come up with nothing, the neurologist letter says I should use sumatriptan when experiencing "acute attacks" now I experience acute attacks on a daily basis, he treat me as if I was a liar, the problem I have is my own GP is nice but I couldn't see him so had to see this clown, I don't want to go complaining to the PCT about the surgery just yet as I need to keep a fairly decent relationship with my GP especially as I am having to see him every few weeks at the moment I will give my own GP a chance first and see what he says.

I found this today which tells me the exact reason he wouldn't prescribe me the injections on a daily basis Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

the cost to the NHS.
The GP told me that the tablets would be better when I said they take too long to work he said thats not true at all, so yeah it is very clear that he either knows nothing about CH or doesn't believe in it, so thats now O2 and regular sumatriptan that my surgery has said no to, a clear case of denying treatment due to cost, they will have 1 more chance when I go to see my own GP next week, if I still get refused treatment I will be reporting them.

Apologies for the long winded rant Undecided

« Last Edit: Apr 16^th, 2011 at 3:27am by ICY »

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Mike NZ

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Re: Treating my CH
Reply #31 - Apr 16^th, 2011 at 5:47am

Hi ICY

Rant away. Going through things like this is what so many people face in order to get the effective treatment they need and deserve.

Instead of having it reduce you to tears, remember that you know you're right, as was the neurologist. All the research for many years has shown verapamil to be an excellent preventive for CHs. Yes, it was originally developed as a blood pressure drug but that doesn't mean that it can't prevent CHs, it just means that that GP is out of touch with current research.

Similarly from imitrex, you don't want to use it too often, but it should be fine for most people 1-2 times a day (especially if using the imitrex tip on the left to use less than 6ml). It can have side effects, like other triptans, so it isn't for everyone (including me) and it can cause rebounds, with some people linking it to longer cycles.

The tablets are not better as they take 20 minutes or so to be absorbed before they start to take effect. Anyone who has experienced a CH, either at first hand or witnessing it will know that 20 minutes is 20 minutes too long.

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