Side effects of topiramate is driving me insane, some advice would be appreciated.

Firstly spend some time looking on the American sites to see that just how toxic this drug is seen to be over there. It is known as Topamax and searching under that will also bring you masses of information. 

Here they appear to disregard all this and seem to be happily prescribing it without considering the long term issues.

The American Federal Drug Agency also has information on this drug that has some amazing statistics in it.

Read the side effects in the box and then circle every one that you are affected with..........it will be a lot. 

I took the drug as part of a pain management issue. We told them at the time I had previous history with Gabapentin and Pregabalin (epileptic drugs) as well but they declined to listen.

I started the drug at the end of December 2012 and it was in January that I started the most horrendous and ongoing experience ever.

I took 11 tablets. Seven once a day and then it was doubled to two a day.

On day seven I stopped myself driving as I was dizzy and disorientated.

On day eight I fell badly. I could not see properly and had the tingling. 

Apparantly I was walking around holding on the the wall to keep balance and walking like I had Parkinsons.

I was white as a sheet and it was when a friend who was a medical professional came in that a halt was called. My GP was contacted and they were stopped immediately.

That weekend was awful, in bed and in retrospect all the symptoms of a stroke and I knew then what I know now I would have presented myself at Casualty as being concerned I had a strike.

I went down from a size 16/18 to a 12 in three weeks (in America they trialled it as an endocrine drug but gave up because of the side effects although the weight loss was amazing for the obese patients.

My eyes dropped by two points and I went into distance glasses.

I was and am and remain word blind and that is after months in Speech Therapy (Aphaisia and Word Blind is a common issue on the American sites.

I also remain uncoindinated with eye to hand and my text messages are not readable but cause a lot of humour.

I cannot raise my left arm fully and my hearing has dropped in my left ear.

My neuropathic pain stopped dead and did not come back for about ten months.

I battled hard to get help. First MRI brain was normal but not done at the time.

First neurologist told me she did not get my problem and thought that it was a fair swap pain for speech!!!

She went to the drug company on my behalf and saw us a couple of months later. In front of her was a large pile of information from the drug company and she showed me two sheets on recovery rates in five year old from the speech issues I was having.

I  was not particulary polite at that time and asked to look at the other information the drug company had supplied and she stated that the drug company had catargorically said she could not share anything else with me. !!!!!!! says it all but at that stage I did not have the energy to deal with it.

Battled hard with Pain Consultant and went into Speech Therapy.

Manages to control the stutter but it did nothing for the word blindness,

Battled harder and evenually got a referral to National Neurological Hospital UCH. Originally picked up by voice specialist but quickly referred into Neuro as vocal cords not working as expected.

Have now had another MRI brain, Pet Scan Brain, Pet CT Scan, Lumbar Puncture and very long appointment in NeuroPysch.

Problem is they now seem to think the drug has kicked off a hidden degenerative disease and seem hesitant to link the drug as being responsible. But talking to more junior staff and research fellows the drug is known to be a nightmare.

Apparantly hundreds of people are left word blind by it.

I now have a days dementia screening to go through and then we will talk to the Prof again at the end of the month and hopefully some decision can be made.

My husband (a healh professional) says I do not have dementia and It is just that I cannot say what I want to say.

I know it was the drug by the sequence of events and time scale. I know the drug company is keeping some thing quiet.

I ask each Consultant I come across if they have shares in the company!

My plan is to use the media to let the world know what has happened to me.

You are where I was. The reason the drug is built up slowly is because it is so toxic. You need to stop it now.

If you can circle your side effects on the drug information leaflet and you have loads (which you will have) then it must be a valid reason to stop.

Ask for a referral into a specialist unit as well..........UCH have been brilliant. Never doubted me once compared with local unit.

 Try to find a meditation group that teaches self healing meditation.

Mummyemw

I ask people as I explain my problems to laught with me and not at me.

I simply also tell strangers that I had a stroke as the easier way to explain it all as well.

According to the statisitcs available on the FDA site in America I have a almost minimal chance of recovery because of my age. 

Remember I only took eleven tablets and almost three years later I am what I consider to still be a mess. I am a trained nurse, my husband is a health professional and we are horrified by what has happened.

Interestingly enough with my last pain management appointment looking a options he mentioned in passing that they are not using the drug very much at all.

You would not as a normal NHS patient get direct contact with your Nuerologist.

Your Gp's have not got a huge amount of knowledge in this area and are playing safe. 

Your best bet if you can afford it would be to see your Neurologist on a private basis as a new patient. This would give you almost an hour of discussion time and would not compromise the NHS aspect. This can be arranged really quickly as well but would probably cost around £200 depending on where you live.

The problem is each tablet you take increases the risk of long term issues.

You need a referral into a specialised unit or consultant with expertise in your overall condition.

Biding my time on what to do next. Have a case for innapropriate prescibing based on previous history but have to prove that it was the drug first.

That is proving hard as it is equally possible that the drug has kicked off something else that was hidden.

I am actually more anxious to bring this drug into the public domain and to let the world know that it is being dished out like smarties here whereas in the USA there is a huge compensation industry behind what this drug has done.

As far as I can work out the NHS think it is wonderful but it is not. 

The original neurologist I saw withheld information from the drug company at the companies request and at the time I did not have the energy to fight it.

To me that is a red rag to a bull scenario.

Deep joy as well off to UCH next week for a days dementia testing as it is one of the things they think the drug kicked off.........my husband says I do not have dementia I just cannot say the things I want to say.

We are confident of the sequence of events and there is no other cause for what has happened.

There is no support group either in the UK which is laurajane feels so isolated as I did as I battled to come to terms with what happened and the denial I felt at the time....................now off to eat a horse as had a stomach bug last week and am battling to get the weight back on. Have real issues with my weight that are ongoing and struggle to maintain my weight. Fighting hard not to have to buy a size 10 wardrobe and have finally relented and thrown out all my large size stuff from before this nightmare xx