ECH

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Mandy

Joined: Tue, 01/17/2017 - 08:37

Last seen: 9 years 6 months

Submitted by Mandy on

I am beginning to get slightly worried and wondered if someone could help please.  I was diagnosed in December 2015 as being ECH and since then have been keeping a diary of my CH.  It turns out that I am getting a CH at least once every two weeks sometimes two or three times a day during that two week period.  I am finding this rather odd as I was given to understand that ECH meant that you had a CH for a few weeks and then a long period of remission before the next bout started.  This is just not happening.  I am also getting shadows, sometimes very painful shados in between.  I take Sumitriptan injections as and when I need them and also I take 25 mg of Topiramate in the morning and 50 mg at bedtime.  I also take manesium supplements every day.  I will shortly be seeing my Neurologist and will show him the diary but wondered if someone could please give me some advice as I am beginning to panic.  The CH are getting worse and I don't know what to do.  Thank you for reading this. 

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zanycheff

Joined: Sat, 11/11/2017 - 11:18

Last seen: 8 years 9 months

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Hi Mandy

Its quite possible that you will be classed as CCH from what i can read,as the breaks are not longer than 28 days? .

I would ask for oxygen as an abortive too when next seeing your neuro as it is a 'no limits' medication and has no side effects, it will also help more on the days where you have multiple attacks :)

Hope this helps 

Ian

(zanycheff)

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Mandy

Joined: Tue, 01/17/2017 - 08:37

Last seen: 9 years 6 months

In reply to by zanycheff

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Thank you Ian - Will go and have a word with my GP (who is excellent) and see what she thinks I should do next. Not due to see the Neurologist again until July. 

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zanycheff

Joined: Sat, 11/11/2017 - 11:18

Last seen: 8 years 9 months

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the forms needed to be filled out for the oxygen called HOOF are available to download on this site :)

Ian 

(zanycheff)

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