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Severity returning

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#1 Wed, 20/05/2020 - 14:41
JonGee
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Last seen: 17 hours 11 min ago
Joined: 19/05/2020 - 21:41

Severity returning

Hello everyone.

 

I have only just joined this excellent organisation, simply because when my CH started about 12 years ago there was very little information available, the Doctors and I pretty much mad it up as we went along. After 2 years of trialling different treatments and dosages of the same, we seemed to find a way of limiting the damage of each episode. From there I was getting 3 or 4 a year but again limited in length and severity.

However, the reason I have begun to research the topic again, is that I am currently in an episode of CH similar to that of 12 years ago, in severity and length. I have trialled most of the treatments available over the years, except the GamaCore and possible surgical solutions.

I would really like to know if anyone esle has experienced a simlilar diary of CH episodes, in terms of seemingly having it under control as best as can be, only to then return to square one? In relation to the 2 mentioned treatments I have not tried, I cant seem to find anything conclusive on their success rate, if anyone can help there please? Mind you, personnaly if anything sums up the nature of CH, it is the innability to pin down conclusively the "Catch all symptoms", resulting in a "This is the correct treatment" scenario.

Any guidance would be very mcuh appreciated. Stay Safe and keep your heads down, pardon the pun.

Regards, JonGee

 

 

 

Wed, 20/05/2020 - 17:43
Mali
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Last seen: 1 week 6 days ago
Joined: 15/09/2019 - 17:36

Hi, 

I've been on a long term course of verapamil, several nerve block injections, steroids, I have oxygen & have been prescribed a gammacore.

The gammacore was a complete game changer for me and I am so thankful for the device. My nurse specialist arranged with the consultant for it to be prescribed and I had it within a matter of days.

i hope this helps and your suffering eases soon!!!

Mali 

Sun, 24/05/2020 - 19:09 (Reply to #2)
JonGee
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Last seen: 17 hours 11 min ago
Joined: 19/05/2020 - 21:41

Hi Mali

Thank you for the reply and the encouraging news too. It is an avenue I will persue this week with vigour and insistence. 

Long may your ease in suffering continue...

 

 

Mon, 25/05/2020 - 15:46
Colin Allen
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Last seen: 2 days 20 hours ago
Joined: 21/03/2012 - 15:19

Hi Jon, as a new member,a call to our advice line would be most beneficial to you. Have pen and paper ready - the information you will be given is easily forgotten after the call. Welcome to OUCH...........sadly.

Tue, 02/06/2020 - 14:10
JonGee
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Last seen: 17 hours 11 min ago
Joined: 19/05/2020 - 21:41

Thank you Colin, I will do that right now....Stay safe..

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