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Treatment advice abroad

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#1 Wed, 27/06/2018 - 15:31
Last seen: 2 years 7 months ago
Joined: 27/06/2018 - 15:04

Treatment advice abroad

Hi there - newbie here!


I was diagnosed with CH around 2 years ago but by the time I got the diagnosis from a neurologist, my cycle had ended and I received Samantriptan tablets in case it came on again. Fast-forward two CH-free years and it's back with a vegence but, this time, I am working in South Sudan. 


I have been trying to bear it for the last two weeks being unable to work and in excrutiating pain - dashing to the nearest clinic for oxygen when it gets unbearable. They perscribed me Sandomigran as it was the only thing slightly close to what I needed but it does nothing for me ...perhaps even enlongates an attack (I might be making that up).


To cut a long story short, it has all become too much and tomorrow I am flying to Nairobi to see a neurologist at the Aga Khan University Hospital and wanted to ask for some advice if the Dr is not up to speed on CH. I know that the hospital does not have the Samantriptan injection pens (I checked with them) that I was hoping for so was wondering if anybody had any advice at all about any other effective meds? 


My last cycle lasted for about 2/3 weeks so was hoping this might be simmilar but it seems different this time and it twice a day. As I am based in the middle of nowhere in South Sudan, I really hope to get some releif before I head back.


Thank you in advance.

Wed, 27/06/2018 - 21:52
Dorothy's picture
Last seen: 3 hours 9 min ago
Joined: 19/02/2014 - 10:16

Sorry to hear this and there's not a lot you can do at this short notice other than to have a look at the downloads section in the menu - get support/downloads. Print the info out to take with you to your appointment and I'm not sure at all about what is available where you'll be but if you can, try to get access to high flow oxygen therapy. Read as much as you can on the website to clue yourself up about treatment options, then you can see what's available there.

All the very best of luck with your appointment.


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