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New with a few med queries

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#1 Fri, 05/02/2016 - 15:34
Cee's picture
Last seen: 8 years 5 months ago
Joined: 05/02/2016 - 14:40

New with a few med queries

Hello prospective OUCH family, I've been recently diagnosed as a 'clusterhead' so i'm not yet sure whether I fall under the episodic or chronic category but I've been trying to do my reading in amongst the pain and taking as much in as I can. 

I've seen a neurologist now and have been put on 40mg of Prednisolone for 14 days - I've been reading about tapering though and I'm a teensy bit concerned that there isn't any involved in the instructions I've been given with it. Just 'take 8 5mg tablets a day on a morning for 2 weeks'. If I don't wean will it make matters worse? Or is the 40mg a day for 14 days with no weaning ok in anyone's experience?....

Alongside this I've been given Topamax to take in increasing increments each week starting with 25mg morning and evening; unfortunately I'm already on with very numb hands, feet, face (including lips) amongst other strange/distressing feelings, and a lot of hair on the floor, which I think may be side effects but I don't know if from the steroid or the Topamax! 

I have the GSK Imigran injections but haven't been shown how to use them (and am a bit overwhelmed by the instruction manual :-P) so have been too nervy to use them when I had an attack yesterday evening (I've only had the injections in my grasp 48 hours). So I popped one of the imigran pills and clung onto the oxygen that thank the stars was finally delivered yesterday late afternoon, just in time it seems. 

It might be worthwhile to note that about 6 or so years ago I was also diagnosed with a slow wave arousal disorder (eventually) after various polgsomnography's/EEG's/other forms of electrocution Wink and after trying a shed load of knoc out pills that weren't effective, until recently it was a lot more under control with Lyrica (Pregabalin) and the timing of my first ever Cluster bout ever has coincided with the degredation of my sleep disorder. Wow, degredation. I managed to remember a big word on these Topamax. I'm impressed with myself in this instance. 

If anyone can offer any help on any of the above, I'd be very grateful. Oh, and....the mask that the Oxygen company brought me is really ill fitting....where would I ask/get hold of one that fits me better? I have quite a petite face.

Thu, 28/04/2016 - 06:43
Last seen: 5 years 7 months ago
Joined: 26/02/2014 - 14:26

Hi Cee,  I am sorry you didn't get a reply to your post.  I realise that you will of finished the steroids, but for future reference the normal steroid regime is 60mg for 5 days then tapering every 3 days.  How are you getting on with the topamax?  With regards to the O2,  if you are still struggling with the mask it is better to hold your mask to your face rather than relying on the strap for 2 reasons, 1) you can get a better seal and 2) if you fall asleep the mask will just fall away so you don't have the risk of suffocating.


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