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Showing all posts by "Kevin keys"

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Posted in when to come OFF topimarate on 19 May, 2014 - 12:17 pm

Hey all
im 35 and i have been getting these nasty things since i was about 22 , ALWAYS starting in febuary ,i have tried a heap of different meds and alternatives as im sure we all have .
Last year was my worst year so far , it went for about 13 or 14 week all high 7 , 8 and 9s , i was at total breaking point , i finally went and seen another GP and he put me on topimarate and within 2 days they were gone .
now i dont know if i had just come to the end of my cycle or not but once they went away i kept taking the tablets for another week or so and that was that..... until now .
They start up again on april 29th , bout a 6 on the old headach scale.
what i have found interesting is that it has delayed my cycle by a few months
i started back on the tablets 3 days later ( 1 tablet a day 50mg) and i have had about 20 headaches total , all about 4, 5 and 6,s and now i have been CH free for about 2 weeks , i am still getting the shadows creeping up my neck or behind my eye like the beast wants to get out but is on a leash or something but no big blow outs and im not scared to go to bed.
so im wondering who out there has used topirmarate and how long do u leave it before coming off it , i only ask because i am feeling particularly dohey in the head but i will take dosile ove CH any day !
THanks guys


Posted in when to come OFF topiramate. on 19 May, 2014 - 10:03 am

Hey all
im 35 and i have been getting these nasty things since i was about 22 , always starting in febuary ,i have tried a heap of different meds and alternatives as im sure we all have .
Last year was my worst year so far , it went for about 13 or 14 week all high 7 , 8 and 9s , i was at total breaking point , i finally went and seen another GP and he put me on topimarate and within 2 days they were gone .
now i dont know if i had just come to the end of my cycle or not but once they went away i kept taking the tablets for another week or so and that was that until now .
They start up again on april 29th , bout a 6 on the old headach scale.
what i have found interesting is that it has delayed my cycle by a few months
i started back on the tablets 3 days later ( 1 tablet a day 50mg) and i have had about 20 headaches total , all about 4, 5 and 6,s and now i have been CH free for about 2 weeks , i am still getting the shadows creeping up my neck or behind my eye like the beast wants to get out but is on a leash or something but no big blow outs and im not scared to go to bed.
so im wondering who out there has used topirmarate and how long do u leave it before coming off it , i only ask because i am feeling particularly dosile but i will take dosile ove CH any day !
THanks guys


Posted in Surgery Options? on 15 May, 2014 - 5:57 pm

Hey i found it straight away
get out of this forum ,
go into the CH news and new treatments forum and then look up
' Aterial Ligation as a cure '

good luck

Kev


Posted in Surgery Options? on 15 May, 2014 - 5:52 pm

hey there
sorry to hear your having a nasty time atm,
I am new to this site as well but i do remember reading about a fellow in Jandakot who flew to south africa not long ago for the surgary and so far he has been CH free , fingers crossed for him .
I am strapped for time at the moment but will try doing a decent search when i get home for you and try find out some more info , i am considering the option myself !!
Hang in there ;)


Posted in Thank you & Advice on Pain Management ?? on 11 May, 2014 - 7:58 pm

Hey webbie

Sorry to hear your having a tough time girl.
Mine have started up again as well. however ...........

Last year was my worst year by far , probably 16 weeks straight of high 8 to 9s with a few 10s chucked in, 7 or 8 times a night living on no sleep at all ,it was a real ball tearer
however they where all short lived thanks to O2 but just left totally exhausted as I know you know,! , I don't think I would have made it through without high flow O2 though, and getting in quick is the key , as soon as you feel that shadow , get on the gas I say ..
Any who .so. Finally last year I seen another doc and he put me on topiramate 50 mg and my CH virtually went away the next day , now weather it had come to the end of my cycle or not I really don't know and I stayed on the tabs for another few weeks until I was sure I was in the clear but they never returned..... Well. until about 2 weeks ago.

I have now picked up my oxy again and started back on the tablets 1 a day and touch wood I have had my fair share of 3 4 and 5s but no big blow outs or that terrible track feeling the next day and even several days of no CHs at all sometimes , of course they are so unpredictable and I wouldn't dare leave the house without my O2 or try a trigger food or drink but I just though I would share that I found topimarate so far to be a god send and personally I don't think I am experiencing any side effects , but of course every one is different.

I wish you the best of luck girl. Stay strong and take care.
Any question feel free to Msg me or whatever. X


Posted in New member saying hi. on 09 May, 2014 - 8:50 pm

Hello everyone , just found this site , just joined.

So sad that this site has to exist but fantastic that it does ,
I have never met another cluster headache sufferer before and I started crying as I was reading these posts , to the long term sufferers who have agonised with this demon there whole life to the young ones who are just starting to experience the hell that is starting to unfold in there life's I feel for you all.
I am so happy to have found this site , I have had CH for about 12 or 13 years now and I think I am pretty lucky to be alive , I'm sure sometimes my head was literally going to explode..
I have tried more things and spent more dollars trying to find out what causes or cures these evil evil things than I care to remember with oxy being my only friend, but worse than that is that no one really understands what it is like to do go through this ...UNTIL NOW
This won't take away the pain , the cycles, the inability to do anything the total exhaustion, the scared to go to bed.................... but it feels good to have people who understand.
I feel for everyone of you.
Kev