Hi all,
I have been given Epilim as a preventative but have noticed that no-one here seems to be on it....or at least I haven't come across any threads mentioning it.  I've decided not to take it anymore.  It did help and improve my quality of life in so much as it stopped the KIP 8, 9 and 10's that lasted for days on end and made me violently ill.  I still got kip 8 and above as a weekly thing though, and Kip 7 and under on a daily basis.  So the doc just gave me Topiramate, which I've read some of you take and it helps you alot. 
I'm just wondering if any of you have ever been given Epilim and how you got on with it, as if I cannot get along with any other meds I'll go back on it as it does help a bit.  Also, those ofyou who take Topiramate, could you please tell me if you had any side effects, and how has it worked for you.
Oh and one last thing, if I don't get along with Topiramate, what else is an option.  My doc just goes along with the info I present to him and my neuro I avoid at all costs as he's unapproachable and doesn't seem to want to give me too much info.  I know to many of you here living in America you'll wonder why I just don't get a new neuro, but it doesn't work like that here.  We get what we're given so I'm trying to do all I can with a very sympathetic but uneducated in the ways of Ch doctor
Thanks in advance xxx

Hi guiseppe, I got 02 and it works as long as I take it at the very first signs ie yawning and feeling like my glasses have become to heavy for my face.  If I miss that, then it doesn't touch me.  Most of my kip 5 and above wake me in full swing so I inject and use the 02 on the  one's I can't inject for.  It's 50/50 whether it works but the action of taking it pschologically helps me and stops me banging my head off the walls.  I am in the process of trying to find an alternative mask to the non re breather I have as I know 02 is escaping and I don't think I'm getting the full benefits.  I've read about the 02ptimask, but am not sure if I can get it here in the UK.  Any ideas?
Verapamil turned me into a zombie, I was so ill and had a searing pain all over the top of my head as well as the migraine and CH I was experiencing.  They weaned me off it with a pred taper and put me on Epilim.  I'm just interested to know about the side effects of Topiramate and how much success guys here have with it.
Lithium hasn't even been mentioned to me.  My neuro isn't a very talkative guy.  He wrote to my GP and gave him a list that we've worked through.  It started with with the Verapamil, then the epilim and next the topiramate.  If this doesn't work his next suggestion is riboflavin.  My doc isn't clued up on CH but even he scoffed at riboflavin.  So I guess if the topiramate doesn't help I'm back to the neuro, the idea of which doesn't thrill me 
Anyways thanks for your input, every little helps
x

Thanks guiseppe I'll take a look in a mo.  Didn't know about being able to up the 02 to 25lpm, but worth looking into.
My doc laughed at the riboflavin as the neuro put it on a list to work down, so effectively it was written as..if verapamil doesn't work try epilim.  If that doesn't work try topiramate.  If that doesn't work try riboflavin.  If that doesn't work go back to the neuro.  It maked much more sense to take it as well as.  Will mention it to the doc whenI next see him x

Thanks, I hope so too.  I'm actually at a cross roads with it all.  I'm stalling starting the topiramate until I research the old shroom thing properly.  Not sure if it's for me or whether I should just give it a go. 
x

Hi,

The anti-convulscent group are my friends when it comes to kicking back at headaches. They are about the only group of drugs I do seem to have some quality of life with *sighs*

Epilim - weight gain helped with migraine but even increasing the doses did not make a scarp of difference to CH for me.
Gave me word finding difficulties and I tended to be a tad drifty. Not always good a house with four kids one with autism and the other with Aspergers and ADHD.

Topiramate. Reducing migraines, made the spaces between CH headaches 'nicer'. Before the after shock pains were horrible. Side effects are tingling fingers/toes just after I take it, loss of appitite some food and drinks taste weird. Word finding difficulties but better cognitive abilities than I had with Epilim.

I do strongly suggest contacting OUCH UK for info on what drugs are available in the UK. It would also be a good idea to ask for a referral to a Neuro.  A good Neuro with a specialised interest in headaches can work with a GP to tweak the drug regime to be more effective as they have a greater knowledge base than most GPs even those with interests in headaches.
You can ask for a referral to a new neurologist again speak with OUCH UK about the problems you have had there.
You can change neuros under the NHS if your having real problems.
I changed mine. My new one is fantastic.

OUCH UK re; none rebreather mask problems. The ones we get issued under the NHS HOOF cost about £2 and I am not sure if the fittings would be compatable so it might be a good idea to chat to someone who has looked into that. It may be possible to order a more expensive better fitting mask on the HOOF.

The NHS provides o2 with an upto 15LPM setting; you would need to ask your home oxygen provider if they do provide a higher setting and if they do then I am fairly sure it would be a case of re-submitting the HOOF. The set-ups in the USA are differant to what is available in the UK so speak with OUCH UK.

And the 'shrooms. DON'T see this website first for legislation etc in the UK Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
You will have the UK drug squad round pretty darn tout sweet under UK legislation . They do not like 'for medicinal purposes' as a defence.
Social services will be breathing down your neck about that too.

If the drugs you have are not working for you.

Call OUCH UK for support and advice. Its UK specific.
Get the name of a good neuro you can travel to
Get a referral from your GP to said neuro
Go see said neuro.

Good luck.

Hi,

I've been on Topiramate for two years now.  I started taking it for migraine prophylaxis.  For the first year I had extreme "tingling" in my limbs as well - my fingers and toes felt as if they were being pricked by several needles much of the time.  This was not a pleasant tingle, but a rather irritating and sometimes painful one.  I rubbed my hands often, and had to scratch my shoes together to help soothe the feet in them.  Sodas/ carbonated beverages did not taste carbonated - this is the only taste difference I noticed.  I had a dry mouth for a while.  These side affects went away in the first year.
The most difficult side effects were the cognitive ones.  I found myself unable to think of words often mid-sentence.  I would be talking about something I was quite knowledgeable about and know what I was about to say, then all of a sudden it was gone... Surely this had happened before, but it started happening on a regular basis on Topiramate (Topamax is the Brand name here - often referred to as Stupamax or dopamax.)  I cannot concentrate sometimes either - sometimes I feel disoriented.  These are all the worst symptoms of the drug that did not dissipate with time!   

Good luck!  I'm now actively trying to get a different preventative - just started getting Clusters 6 mos ago.   

Val

I've read about the 02ptimask, but am not sure if I can get it here in the UK.  Any ideas?

Try this thread:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Lefty...!