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

Well as long as you're working closely with a doc who will monitor your dosing:

Lithium at 1200 mg a day has been a great preventative for me. Takes about 10-14 days to become effective for me. I do a prednisone taper, 80 mg to zero, over that 14 days to keep the beast at bay. Lithium takes a lot of blood work the first time around as different people process it differently. While we take a much lower dose then those who use it for psyche reasons, there is always the danger of lithium toxicity so you will need to work closely with your doc.

Verapamil, at doses higher then most docs are used to, is also a very popular prevent. Some go as high as 960 mg a day. It also requires very close monitoring by a doctor as different peoples bodies react differently to it and you can reach a dangerously low blood pressure if it's not closely monitored.

You do not mention oxygen. Should be your first line abortive.

Good luck, many more to read about on the meds board and discuss with your doc.

Joe

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

Riboflavin...Vitamin B-2. I have been taking that as a daily supplement, along with magnesium, calcium and Vitamin D for about 10 years. It was at the suggestion of a neuro many moons ago. I've been seeing a lot of interest on the board regarding the magnesium and vitamin d deficiency, and an occasional mention of the B-2 Riboflavin issue. I'm convinced this regimen has reduced the intensity and frequency of my attacks. I've been too chicken to try and figure out if it's the B-2 or the Magnesium/Calcium so I keep taking both.

Go to the general board and in the top half you'll see "Optimasks Available" Take a look at those. You can order them right from the board. (And no...I'm not a commissioned salesman! ;)) And make sure you have a regulator high enough to keep up with your breathing. At least 15 LPM, many have to go as high as 25 LPM to get relief. If you haven't laready done so, read the link on the left Oxygen INfo to make sure you've got the right set up.

Joe

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

And the B-2/Riboflavin is just an OTC vitamin available at any grocery or vitamin store. Wishing you some better luck with the treatments...and soon!

Joe

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

FYI, in case somebody missed it Epilim is the same thing as depakote (I had to do several cross references to find the correlation).

'darlin

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 START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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.

Thank you all for your replies.
Katie I read your reply with interest as I also have a son with asperger's and it plays a massive part in me needing to be alert and able to cope with him.  
I deon't really know if I'm serious about the shroom thing...just desperate at the moment.  I got 02 already but it's touch and go whether it works and i really think it's down to the mask.
I think I'll take your advice and contact OUCH UK, as I'm really struggling at the moment.  Especially as my son lets me have no sleep most nights which triggers my CH.  Thanks once again
S x

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

Just thought

Epilim is Sodium Valporate primarily used in Epilepsy

Depakote is Semi Sodium Valporate primarily used as a mood regulater in bi-polar.
It also costs 4-5 times that of Sodium Valporate

The two drugs are similar but not the same as and do have slightly different effects and side effects.

Both drugs may help some who have chronic migraine and/or cluster headaches. It is best to chat with your neuro over which type and form of preventative might be more helpful in each person as we all tend to respon to drugs in our own unigue ways.

[Adding the Topamax has now gone in the bin. I have developed a head to toe body rash that is insanely itchy- great for headaches but I cannot live with what it has done to my skin  ::) ]

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

Try this thread:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Lefty...!

Contact OUCH UK and ask.

Someone out there may have managed to find a similar one in the UK and been able to get it prescribed on the HOOF/HOTS ;)