Do you suffer from any of the followi... - Epilepsy Research...

Epilepsy Research Institute

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Do you suffer from any of the following symptoms alongside epilepsy

LeighS profile imageLeighSEpilepsy Research UK118 Voters

Please select all that apply:

30 Replies
ecossaise profile image
ecossaise

I also suffer from a lack of proper co-ordination and balance - this may be due to the actual drugs I take to control my seizures but that is not certain. It has the effect of me having suffered 3 times from broken leg/ankle/foot bones in the last 2 years.

coetzeegisela profile image
coetzeegisela in reply to ecossaise

Very similar - suspect to do with the medication. Epilepsy was found to be a misdiagnosis.

timsgirl profile image
timsgirl

My memory is terrible I can remember everything I learned before I was about 20 but anything I have done since then is terrible I don't recognise people or places forget holidays and find it difficult to learn new things just using this tablet I recently bought is a pain!

jazzyjade profile image
jazzyjade

I have problems with balance and short term memory. I have to write on a post it note the things I need to do!!! My speech is also stuttery and has become like this over the past couple of months. I know what I want to say but I can't seem to say it properly. I don't know whether this is down to the drugs I'm taking to control it. I think the balance part of it is.

nookthesnook profile image
nookthesnook in reply to jazzyjade

Hi, I have just joined site. So interesting to read you similar to myself re... balance and saying things properly and stuttering, I cannot get words out. I too am not sure if it is drugs. What, if I may ask are you currently taking? I take tegretol and lamotrogine

jazzyjade profile image
jazzyjade in reply to nookthesnook

I'm taking Epilim and have been since 1987. I'm allergic to tegretol

in reply to jazzyjade

I'm allergic to Epilip... The other way round!

sporan profile image
sporan in reply to jazzyjade

Snap! Although all the symptoms you have mentioned pre-existed for me before diagnoses and medication. Some of the symptoms have changed since medication started (some worse some better) and it is difficult to know if changes due to meds or underlying condition. My epilepsy is caused by a left medial temporal lobe lesion. As for the memory issue I quite often start to do thing and then can't remember what it is I was going to do. It really is frustrating.

xyz123 profile image
xyz123

I get violent sweating attacks at night; not sure if this is from side effect of brain surgery, the epilepsy or drugs. Be interesting to hear of anyone else with the same problem.

M-Lee73 profile image
M-Lee73 in reply to xyz123

I was only diagnosed this year with temporal lobe epilepsy and it was when increasing my medication of lamotrigine that I suffered with terrible night sweats. It has settled down more now but sometimes comes and goes so it may well be a side effect from your medication.

daisyd profile image
daisyd

I thought all my symptoms were caused by the epilepsy I have, but since I was diagnosed with Hughes syndrome, Antiphospholipid syndrome sticky blood all the same condition.

I am now on Warfarin and although not perfect the memory type fog has gone, I am still a bit slow and have poor memory and concentration. I am on 600mgs Lamotrigine for the epilepsy, might be worth taking a look, it's on the Healthunlocked web site too

Lookinup21 profile image
Lookinup21 in reply to daisyd

I was also diagnosed with APS... Now I'm having trouble with my seizures and memory

daisyd profile image
daisyd in reply to Lookinup21

What medication are you on and do you see a haematologist ?

Lovingdean profile image
Lovingdean in reply to daisyd

My son has Autism and severe learning difficulties. He has been Epileptic for 9 yrs. It is useful to read what everyone says. He is on Lamotigine 100mgs and Keppra 500mgs. He was switching from Keppra to Lamotrigine. He might have to go on to the branded version the Accord one is getting harder to access. Difficult to see him having tonic/ clonic seizures.

Occasionally lack of co-ordination and balance, which is probably due to tiredness or the effect of medication. I currently take Carbamazapine and Phenytoin which is controlling me well.

coetzeegisela profile image
coetzeegisela in reply to

"Occasionally lack of co-ordination and balance, which is probably due to tiredness or the effect of medication. I currently take Carbamazapine and Phenytoin which is controlling me well."

Both were bad for co-ordination and balance, and have had recorded at GP, Neurologist, Neuro-Physiotherapist.

in reply to coetzeegisela

I have been on these two tablets for many years now, and am not prepared to change after 40 years with epilepsy. They both control my seizures and I previously managed to go 15 months seizure free. I am now 12 weeks seizure free. I'm not prepared now to go from doctor to doctor, Neuro to Neuro, MRI's or more. My epilepsy is well controlled. Thank you for your comments... they could help another person with the same issues.

Rosalia profile image
Rosalia

I suffer from all of the options above including the side effects of carbamazepine, not ideal with GCSE'S in 2 weeks

ecossaise profile image
ecossaise

For some reason, I haven't been getting alerts about this part of the site so have only just found all the comments. To Noonthesnook and Jazyjade, is it possible that the speech problems are actually "mini" epilepsy episodes? This speech problem is exactly the effect that I get when coming out of a seizure????

As I've said under several other "headings" my memory problems are immense. It used to be mainly my long term memory that was the problem but, on reading all the other comments, I wonder if my more recent short to medium term problems could be due to the increase in my Lamotrigine meds - from 400mgs to 500mgs in two steps to try to control a return of my nocturnal seizures?? My lack of balance and frequent stumbling are slightly worse as well since then.

I also realise now that the awful sweating attacks I get (daytime only) actually started when I began taking Lamotrigine 4 years ago. I end up soaking wet all over but particularly face, neck, scalp and upper body. Like Timsgirl, I also find it very difficult to learn new things and my ability to do maths calulations have become DREADFUL.

Yenwarp profile image
Yenwarp

I have never been on this site before - purely due to the fact I struggle badly with looking and concentrating with the resolution with the screen. I now at long last have a HMDI 26 inch screen with sound and 1080 pixels.

My Epilepsy is to be honest a real problem to deal with, I live with 24/7 chronic pain and am a survivor of CSA, lived in 9 homes upto the age of 17 when I was literally put in a flat by Social Services and basically that was the last I saw of them totally.

I have 3 daughters who are aged 21 - 23 and 25 who support me as much as they can, I wrote to DVLA and handed my driving License back to them as I know if I had an accident driving and it was not my fault I would still blame myself.

Use to be a Social Worker and lasted 9 years and now am on their Deferred Pension with the County.

I wear verifocal glasses when going outside as when I walk with 24/7 pain I am unsure whether it is the pain that is making me sweat or a seizure is about to happen? some days I just become so tired with all the medication I need to take - my dairy is my life saver as a have short term memory.

What I would really be interested to know is if there is any one else out there with the same symptoms - Almost every time I wake up I am hot and sweaty - need fan on to cool me down, take my medication and after 3 to 4 cups of sweet tea I then start to focus and function to start the day of.

I apologise if this is a long comment? yet as I said it is the first time on this site.

Best Wishes

Chazzy

nicolagreves profile image
nicolagrevesVolunteer

My memory - short term and long term is devastated. Unless prompted by photographs, I have no memories at all from my childhood, teenage years, early adulthood. It used to depress me, humiliate me and embarrass me - these days I take as many photographs as possible to provide myself with all the reminders as I can!

pt26 profile image
pt26

I have just come upon this sight as I was interested in the effect of epilepsy has on my

grown up son, and it's reassuring for me to understand why he has memory problems,

I have read about it before, and I can understand why he gets so frustrated, and I have

always tried to be understanding for this reason. I will mention this site to him when

he gets home from work, but at the moment his lap top is broken. He is on Lamictal and Keppra. thanks everyone

coetzeegisela profile image
coetzeegisela

Impaired equilibrium.

Chimbelina profile image
Chimbelina

I am very interested to see how may people suffer from chronic fatigue in this poll - half of all the voters!

I expected the other shared symptoms. Perhaps knowing this can warn others to go easy on themselves, particularly if they catch a virus or find they are under undue stress.

Once you get full blown ME/CFS (chronic fatigue syndrome) it is very difficult to break the cycle if you also have epilepsy as one condition triggers the other and visa versa.

jules1973 profile image
jules1973

Oh yesss them all to a degree but my memory is the worst one iv had test done and i failed them apart from two

daisyd profile image
daisyd

Hi Jules have you been tested for the Hughes syndrome which I wrote about 10 months ago.

thisjean profile image
thisjean

Basic arithmetic is somehow beyond me now and my left side sometimes just loses strength and I have fallen several times just getting up from a chair. I had brain surgery for a ruptured brain aneurysm 3 years ago -the cause of my secondary epilepsy so it is difficult to determine which symptoms have which cause. Currently I am on a very high dose of Lamotrigine but still have auras every day

Xena111 profile image
Xena111

I've been diagnosed with CFS- and the two years leading up to it were among the worst of my life. First docs wanted to say it was spontaneous Bipolar II and put me on more meds forgetting these are also epilesy meds- did not coordinate with neurologist... Then I got worse- the next thing they said was it was temporal dementia. I got lucky and a friend flew me to UCLA where I got a PET scan- I've been on anti virals for a year. It's a bitch but I have learned to never let anyone forget I HAVE EPILEPSY. I have to coordinate treatments. I think this is a really great topic. Thanks for starting it.

Davidc3370 profile image
Davidc3370

I have such bad balance problems that people have actually presumed I,m drunk and have been quite rude to me!

Davidc3370 profile image
Davidc3370

I am on 700mg Phenytoin and 400mg Epilim daily....Temporal Lobe Epilepsy......my memory is terrible, when I am tired I even forget what I,m talking about half way through a sentence....totally embarrassing.