Tegrtol prolonged release 200mg

[Ksjones]

HI I have been on this carbonmazapine 400mg twice a day since 2008, for seizures. I have been told that I need to stop taking this medication due to possible allegy. Over 2 years I have to slowly come off the medication.

I am now down to 200mg twice a day, all ok. Until I have enough for 5 days and no pharmacy in the area is able to get hold of the medication anymore.

What do I do?

Have been told if I come off it to soon it will case side affect.

If any one can advise with any possible solutions I would be greatful.

[GillyA]

If you are being treated by a consultant or have an epilepsy nurse, do try getting in touch with them - the consultant will have a secretary you should be able to talk to. Sometimes a hospital can get hold of meds when ordinary pharmacies can’t. Otherwise talk to your GP for advice. Wishing you success.

[Ksjones in reply to GillyA]

Thank you I will try this.

[elsieadams]

I was on tegretol for many years reading the side effects I remember seeing one that it may cause reflux disease. Guess what I developed it and am on more meds for acid reflux. Now I have to be very careful what I eat suddenly having an attack on when eating something with certain ingredients is both bad on your stomach and embarrassing. I m now on Dilantin and clobazam which for me are working fine. As far as you being able to get your meds contact your previous doctor and see if he can renew your meds over the phone. Hope your situation works out.

[Ksjones]

Thank you, the medication has made me have issues with my skin and I now can't have milk egg white certain water will affect it and an allergy to sun light. I have to cover up even on cloudy days or my skin sewells and I can't open my eyes due to the swelling and sun burn even if I am in the light for less than a minute. As an active person that loves teaching sailing and other outdoor sports. I will contact the doctor but I feel like is am a ticking time bomb.

[Mercedes199712345]

I’ve been on carbamazipine since 2012. Luckily I’ve only had 2 seizures. I have between 2-6 tablets a day. As my neurologist is happy for me to take what I need myself as I know my triggers, which are stress and lack of sleep

If you need tablets! Get in touch with your gp or neurologist! They will sort you out. Don’t go without!!

My gp receptionist said ‘go on another tablet.’ My mum spoke to my doctor and was like ‘she can’t swap.’ They was like ‘obviously, I don’t know why the receptionist even suggested that!’

They know me well. I could have come off my meds years ago but I drive so I basically refuse to come off them. Which they agree with my argument, why come off such a small dose when you drive and could possibly put myself and others at risk for the sake of a few tablets that keep my epilepsy at bay.

I’ve recently finally been given a normal licence, as since I’ve been able to drive I’ve had a medical licence (uk) so they know that I WILL NOT BE COMING OFF THEM ANYTIME SOON! As my licence means ALOT to me.

I’ve managed to get 3 months supply (only due to my auntie working at a pharmacy and could get me 3 months supply.)

So the doctors were able to give me perscriptions for 3 months so I was able to get it. Due to my mum being in hospital before Christmas.

I have other disabilities. Such as I cannot physically talk and other stuff, so my mum deals with all that type of stuff hence why I got 3 months as my mum is off her feet etc.

But don’t quote me on this. I’ve heard by February, they will have sorted the issue out with carbamazepine and it will be back in stock again!

It’s stupid how such a small thing (like tablets) what most people think there’s endless supply off, can wreck peoples world if they suddenly go out of stock!

I’ve been lucky. I can manage on 2 most days so most of the time I have spare when it’s end of the month for the next month. So I’ve been able to manage my tablets really well and ration them out.

But some people aren’t so lucky as they need a certain amount every day!

As for allergies… I don’t know if it’s anything to do with my epilepsy meds. But a few years ago. I randomly became allergic to the cold. Came out in hives and everything, red blotchy skin. Itchy skin. Like I could itch my skin off kind of feeling! However sun, etc. I’m fine with. I’m a bit of a sun worshiper!

[Mybraveface in reply to Mercedes199712345]

I was on tegretol/carbamazepine ( plus clobazam) for years and used to have problems with hives on my legs and arms..... only way I could stop this was by taking loratadine antihistamine tablets. No longer on carbamazepine due to added side-effects ( SHBG levels raised, hematocrit levels, cholesterol levels) . Now busy adjusting to combination of clobazam with briviact..... very early days (about 6 weeks) , but many of the side-effects from carbamazepine seem to be better, though still some possible skin irritation.

[Ksjones]

I have been told that medication might give me similar issues to what I have now. My Neurologist wants me on on nothing or another medication. It's just getting hold of the medication while coming off of it. At the moment I have headaches and migraines every day and told no pain killers. The headaches are getting worse. In the meantime I have to wait until a new appointment with the neurologist.