pleasehelp

Hi thank you for answering. I am starting to feel a little bit better now. I was just worried aboutthe reduction in dose as I thought it might make me ill.sa dra

Hello Karen

I am new to this forum but not to epilepsy.

I have hippocampal sclerosis and TLE with simple and complex partial seizures.

In what way does epanutin alter your bloood count?

I know it can cause anaemia and a low ferraiin level hich can result in numbness to the nerves.

Thanks Lucy

Lucy.

Thank you for answering. Can I ask if you take anything else with phenobarb as I take that as well. Youhavemade me feel better. Sandra

Sandra,  

Yep I saw my Doc and he decided to up my Phenobarb which I was told not to have them upped as if I have a fit its mainly in the mornings.  I was on 120 mg evening of phenobarbs and 90 in the mornings a lot I think, but they are scary things ..but now I am on 120 am and pm and a Doc at hospital said dont take more than 90mg am  I have been  on Keppra and they make me sleep so I have downed Keppra to evenings only.  We know what suits us.  So bottom  line I am on 120 phenobarb mornings with Vitamin B  and Keppra 500 with 120 phenobarbs pm xx  I want to get down to 90 phenobarb AM..  lol hope you understand my type xx

We know our own bodies and what suits us best but tut tut lol  bliming Docs say up them glad I downed the keppra xx  Keep Well  xxWin xx

 

Oh and Keppra makes your hair thin if you dont take vitamins with it !!

Now they tell me  lol

Keep Well

Win xx

If your fits are mainly in the morning perhaps it's all to do with your breathing during the night when sleeping. if you're anything like me I breath very shallow when sleeping and when I wake I feel like I'm going to have an Aura, I've mentioned this regarding shallow breathing and oxygen shortage to the brain to my Dr but he dismissed it. I know what my body is telling me. Best wishes karen

Doesn't it annoy you how they treat us Karen, I think Docs should listen to us a bit more, sorry I haven't been on here I keep forgetting my P/w lol cognative skills gone AWOL  ha ha,  could be when I was young (she had a good memory then) and had to see nuero Doc he said we don't know why you have them but you do ??? perhaps  it is shallow ..hey you calling me shallow j/k  xx  breathing never thought of that !! Scary things though aren't they, I wake up and if my hand/arm twitches Iay on it.

Scary things I used to think "I have these for a reason"  never found out why though  lol  Love to You and Sandra xxxxx

Hi thanks for the information. People without the condition don't understand. I take phenobarbital 60mg am and 90mg pm. I also take epilim 500mg am and pm. For 40 odd years I took epanutin 150mg twice a day now reduced to 100mg twice a day.

Do you think I am safe taking these?

Many thanks to both of you.

Sandra

Epanutin is for generalised seizures, are these your type. I was taking epanutin for approx 15+ years, but they were the wrong drug for my seizure type because I have partial seizures and simple partial seizures. Epilim is a very good popular drug they didn't suit me. I think you may be suitable for Gabapentin, 6 mths I was fit free with em but after the 'honeymoon period' is over, back to misery. So if you have any more trouble ask your doc to try Gabapentin. It's a constant battle trying to find the right drug. All the best

Winnie I take a drug for psoriatic arthritics and one side effect I read is hair loss. My arthritis Dr said I wasn’t on a high enough dose for hair loss but he said I could take a biotin supplement if I wanted. Biotin is part of the makeup of hair and nails. I’ve been taking a dissolvable form. He said he takes it for his hair. Meds effect everyone different. I’ve taken generic Keppra, levetiracetam, (the drug of rage if I take it alone) for years and haven’t had a problem with hair loss. But side effects are different for everyone.

Karen Have you been checked for sleep apnea? I have it and I’m supposed wear to special mask powered by a breathing machine. I somehow messed up the settings of how much air it supplies and haven’t been using it as set too high and I don’t know how to adjust it. It pumps too much air. I almost feel if I were drowning and can’t sleep at its current setting.

Hi Steve, no never been checked for sleep apnea. I will now though. But the idea of having a mask over my face sounds scary, I'm terribly claustrophobic, I have panic attacks when I know I'm going for an MRI. Thanks ☺

I agree Steve but if we tell each other our side effects then forearmed is forewarned .

Glad youstill have your hair all in once place lol  I .took both but had a SAH a brain bleed nothing to do with my epilepsy  and lost a year of my life sleeping etc .  I came around from that and when I started to get better.

I used to brush my hair and cry as I saw thin locks of my hair all over the floor heat breaking  lol xx Keep well  Win xx  

Might make me look better to hubs in  the morning lol

They never questioned it as to why only AM  on me but if I get one hint of shakes I stay in bed so as to not do my break dancing act !!

Who feels like they have run a marathon after a seizure.

 

Hi Winnie

Just logged onto this forum. I have hippocampal sclerosis and TLE . please can you tell me what kind of epilepsy and seizure types you have .

Keep well.

Lucy

Help, just read this posting. I have simple and complex partial seizures due to hippocampal sclerosis and TLE and have been on epanutin since 1999.

Lucy

Lucy.

Hi Lucy, I have complex partial seizures and simple partial seizures too, but sometimes I have drop seizure where my legs just buckle and I can suddenly 'drop' to the floor this type doesn't happen often but when I feel an aura it can rapidly develop into a drop.

All this is due to me having Tuberous Sclerosis Complex (TSC), when I was first diagnosed age 13 (1971) I was given epanutin and then it was changed because of the effect it was having on my blood (1998). And the drug wasn't for the type of fits in have. Epanutin is for the generalised ones, I am taking at present Lamictal, Fycompa and Clobazam. Because of the TSC my epilepsy is drug resistant. I hope this helps, Karen

Sounds like me except ep due to scarring of the hippocampus from meningitis as a teenager.

I also take clobazam. The epanuitin hads been slowly reduced by the neurologist from 500 mgs a day to 50 mgs daily. I have daily seizures irrespective of the dose. I am fed up because I also take warfarin and have to be careful what I eat. I have to watch the antibiotics too.

Do yoou have  daily szs/ Are you in the UK? I am. Sorry about asking questions.

I tried Fycompa, perampanel and it had to be discontinued after 3 x 2 mgs tablets. I must have tried nearly every aed going. Have you got any allergies or food intolerances?

kind regards

Lucy.

Hi Steve

I am a newcomer to the forum . I have hippocampal sclerosis and tle with simple and complex partial daily seizures. I have had atonic seizures occasionally and tonic where the body stiffens and is thrown backwards very dangerous when standing.

I read your comments ion cpap and I am sorry to hear about the difficulties encoountered.

My neurologist suggested cpap as a treatment for szs , he said they have had some very good results from cpap if persoon has intractable epilepsy but nothing was done about it. On the occasions when you have used it did it make any difference at all?

Sorry about the quuestions. i have written to Karen and Winnie as well.

why did fycomp have to be stopped?

 

Hi Winnie, I started taking Keppra in September and have already noticed my hair thinning-what vitamins should I take?

Hi Cathy. I’ve been on generic Keppra and Lamictal for years and haven’t lost any hair. A couple of years ago I developed rheumatoid psoriatic arthritis in my knee. The arthritic Dr prescribed a med that is used to treat some cancers and also rheumatoid psoriatic arthritis. I was worried about losing hair. My Dr told me I could take a supplement of Biotin, which is the main substance of hair and finger nails. I use a fast dissolving (melts in your mouth) tablet. Haven’t lost hair, but that just may be my body system. No guarantee it will work.