Wed 2nd November

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Wed 2nd November

Post by Sheena Hulston on Wed Nov 02, 2011 11:45 pm

Hi Tee
Got my letter from Dr S today and it explains that its SUNA that I have on top of HM.
He has 25 other people who has HM and SUNA. I just have to be unlucky enough to be one of them but putting me on Lamotrigine should help with it, but still weaning off the Topiromate at the moment so it will be a couple of months untill I find out if it works.
Apart from that just poddling along at the mo, no side affects or major changes from reducing the Topiramate so they could not have been doing much for me....
Having a 10 about once a month now and apart from that cruising along on 2/3 all the time except forthe hour or so each day this SUNA kicks in or the odd night it keeps me awake. I get the SUNA every day and thought it was just part of the HM.
Hope all is well with everyone else
Sheena
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Re: Wed 2nd November

Post by Tee on Thu Nov 03, 2011 3:21 am

Oh poppet - I am sorry - not fun at all. I get the odd ice pick but nothing like SUNA - how long do your attacks of this last and do you get the eye / nose stuff too?

I have heard of Lamotrigine one from the epilepsy drug family - but have no first hand experience - I do hope it helps - I assume it takes a while to kick in?

SUNA- is 'short-lasting unilateral neuralgiform headache attacks with cranial autonomic symptoms' for those who have not heard of it

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Re: Wed 2nd November

Post by Sheena Hulston on Thu Nov 03, 2011 4:28 am

Hi
Yes I get the runny eye and nose and then if it goes on for a bit I find my eye drops as well, but just noticed this since i have been asked to check!!! thats why I thought it was all part of the HM.
They last from short attacks of a few mins to long blasts of up to an hour, but not continual, you get short sharp blasts with gaps in between but it is daily and quite wearing.
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Re: Wed 2nd November

Post by Tee on Thu Nov 03, 2011 4:41 am

HUGS - Let's hope the new drug helps.

Do let us know how you get on ...

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Re: Wed 2nd November

Post by usedtobejolly on Mon Nov 07, 2011 9:51 pm

Lamotrigine is one of the drugs that is on the list that the headache doctor may add on to my current medication. The others on the list are Carbamazepine or an SNRI.

Will write another post about this.
x
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Re: Wed 2nd November

Post by Sheena Hulston on Tue Nov 08, 2011 12:39 am

I have 3 weeks before I start on this so will let you know how I get on as well x
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