I've not posted for quite a while as my ataxia is relatively mild and not too troublesome.
Today, after suffering from increasingly severe seizures over the last couple of years, I was officially diagnosed with epilepsy and offered the full benefits that entails. I now get free prescriptions for any medication, access to the epilepsy clinic and a go to consultant at the JR in Oxford.
I'm writing because my neuro established a link between the encephalopathic illness I had seven years ago, which led directly to my ataxia, and my current position with grand mal seizures. She didn't detail the link other than to say it is certainly verifiable.
I was wondering if anyone else on the list has a dual diagnosis such as mine, and if so how do you react to anti epilepsy medication.
I am about to start on Lamotrigine.
All the best and Happy New Year,
Julian.
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Hi Julian I have the same and on lamotragine, levericitam and clonozipam, I stayed in the sleep clinic there and I see the neurologist any a team that del with the epilepsy. I also have superficial siderosis which I presume ispartly why I take other meds. Jr is brilliant in my experience so definitely in the right place,clive
Thanks Clive,I was at the West Wing just before xmas for an eeg.
Do you think there is a link between epilepsy and ataxia? My psychiatrist was convinced there was a link between my unusual behaviour (turns out to be dissociative seizures) and my ataxia. She thinks that one has fed the other and sent me to a neuro at the Horton...who diagnosed epileptic seizures inc. Grand Mal.
How does the Lamotrigine work for you? Any side effects?
Yeah there are side effects which really effect mood so you will probably be increased in stages to obviously reduce siezures and reduce side affects which is vital and by the sound of it especially in your case
I'm on 1.5 mg of clonozipam, 2000 of levericitam and 600mg of lamotragine which I believe all help with epilepsy and parasomnia. (. Excuse the spelling) it took nearly a year for my professor to increase lamotragine to 600.. the main side effects are when I forget to take them so I would definitely get someone to give you a reminder. I take mine at night but I'm sure it differs depending on when you most have siezures I suppose. I hope this helps, I put my total trust in jr hospital as whatever they suggest has always helped.
Yep west wing waiting room c I think, little daft tip but if you go quite regular go to the friends cafe on level 2 as the foods better and half the price of costa and all the money spent gos back into the hospital as the staff are volunteers
I've only had to deal with ataxia, so far, for the last 7 years and have built up quite a number of friends in a similar situation through our support group in Oxford. Are you aware of our group?
Anyway epilepsy is a whole new ball game for me at the moment. I'm hoping I can get an appt. at the epilepsy clinic pretty soon before I start forming too many ideas of my own and can get guidance over how this is going to affect my life.
I generally like the West Wing and its staff but despise the main JR....
Hi no I wasn't aware and wouldn't mind knowing more, I have ataxia real bad but as I said that medication is mainly for the epilepsy. As for JR I suppose it's which consultant we deal with which gives us the opinion. This group sounds interesting cos since diagnosis I'm now unable to walk or work, I didn't think epilepsy was linked but those pills your on are the same and they definitely help with siezures
Hi Clive, if you search on facebook for Oxford area ataxia support group you will find us. For some reason I cannot give a direct link.We are a very friendly group and in normal times we meet up for coffee mornings 3 or 4 times per year and have an annual xmas meal, sometimes a summer picnic.
We haven't met in person this year due to covid but some members have formed zoom meetings, though I have always been working.
One of our members has recieved an MBE for his work with disabilty rights.
Hi Julian 🙂 I was initially diagnosed (1992 ish) with Temporal Lobe Epilepsy, later changed to Idiopathic Cerebellar Ataxia (2011). In the past I’ve been prescribed Carbamazaphine, Sodium Valproate, Carbamazaphine Retard and Lamotrigine. It took years to have the diagnosis of Epilepsy reversed and medication to be withdrawn. I started off experiencing Deja Vu episodes and had one seizure in my sleep after a severe shock. Despite accumulating symptoms not generally associated with Epilepsy, no action was taken to investigate until I started having unexplained falls.
I’ve been seen at UCLH in London, and current thinking is I have a Recessive Ataxia, possibly one linked to Episodic Ataxia (not with current findings). Testing has shown a tenuous link with Syne1, and I test negative for CANVAS.
My ataxia has progressed over the years and I have most general ataxia symptoms, currently I can still walk (very unsteadily) and need a walking stick for safety.
Epilepsy medication didn’t make any difference to my episodes of Deja Vu, despite changing to different meds’ or upping medication. The episodes disappeared over time, and my current Neurologist thinks they could have been linked to Silent Migraine. After changing to Carbamazaphine Retard I started experiencing serious eye problems, and was diagnosed with Iritis.
So the symptoms of ataxia and epilepsy are very different, though my psychiatrist claims that there is a link between my unusual behaviour and my ataxia. Interested to know why you were diagnosed with epilepsy in the first place though.
I had been having periods of dissociation where I would wander off late at night, not knowing where I was going or why. I couldn't recall details and the police thought I was suicidal. My episodes later shortened into full loss of consciousness, twitching, tongue biting, mouth frothing full on seizures.
Nobody mentioned epilepsy until I was refered to a Neuro who put the pieces together.
I'm not sure how to react to my diagnosis yet, though I feel a little relief at being accepted as having a problem and the prospect of AED's for life doesn't thrill me.
🤔 Going back to childhood (I’m 70 now) I recall very brief episodes where I’d be walking but for seconds feel disassociated from my body, those descriptions along with regular Deja Vu (started in my 20s) and 1 seizure in my sleep (early 1990s) were considered sufficient to warrant a scan, the result was a diagnosis of Temporal Lobe Epilepsy. But attempts to provoke seizure activity were unsuccessful. I never found myself wandering off, or couldn’t recall something. But, like ataxia, Epilepsy can be complicated...There’s no doubt there is a link with ataxia.
For me, Deja vu episodes went on for several years, and these usually happened first thing in the morning after I gotten out of bed. They could sometimes be triggered by running water, other times just appearing out of the blue. I’d have the distinct feeling of Deja Vu (which is just the sensation of being somewhere/ hearing something familiar etc), and also a sense of deep fatigue and dizziness, although I never shook as though having a seizure or actually lost consciousness.
So..I went from the misdiagnosis of Epilepsy in 1992ish, to 2011 (I had ataxia symptoms and an MRI showing Cerebellar Atrophy) when I was finally diagnosed with Idiopathic Cerebellar Ataxia. The years in between took their toll, I was very anxious and depressed, accumulating ataxia symptoms but being being dismissed as a ‘timewaster’ by GPs because of the existing diagnosis. In the 1990s ataxia was less understood than it is now, so it’s not surprising the situation went on for as long as it did.
Its not a nice thought ‘being controlled by medication’. But if you need medication to keep you safe, you definitely should take it.
In 1996 after the birth of my second child I had three epileptic type fits (grand mal) in a period of 10 days. The MRI brain scan showed that it wasn't actual epilepsy. I took medication for a period of 2 years and was weaned off it at the end of that period. Sorry I can't remember what meds. My GP at the time was sure they were due to a sudden change in hormones especially as the birth was very rapid.
In reality my ataxia symptoms started during adolescence. I was very clumsy and walked a little bit strangely. But nothing much, I could do everything. So nothing was ever investigated.
I have idiopathic SCA. I told it's genetic but still have not been matched with any of the known SCAs.
Some of the drs I now see seem to think that the fits were linked to my ataxia but nobody has ever said anything definite 🤷. Seems par for the course for everything for me. LOL
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