Pills for Epilepsy~Too many !!

Posted , 4 users are following.

I have had Epilepsy since I was 14 and I suggest the Doctors try the drugs they put us on before they ask us to take them !

I have taken phenobarbitone since 14 gradually the dose went up and the Hospital said to me "Do not take anymore than 120mg at night and 90mg in the morning.  I am now on Keppra also and I want to down them  but I am not allowed to.  I know my own body and feel like a guinea pig.

I want to down the keppra and phenobarbs as I only need 120 night time and 90 mornings (pheno) and approx 500 x 2 of keppra If I get the shakes

I can always take an extra Keppra but no they want me on high dosage.

Good luck All

Win xx 

 

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  • Posted

    Winnie

    Years ago, I was on phenobarbital and hated it. I felt stupid and it was probably dose related-too high. The Dr. at that time, never took blood tests to find out how much of the stuff was in my system. When you take the 120mg and 90mg dose, do you spread them out in equal time span, 12hrs on 120 and the next dose 90mg 12 hours later? I wouldn’t want to crowd them to close together. People have died from overdoses of phenobarbital, especially when mixed with alcohol.

    I don’t understand taking Keppra if you get the shakes. I take 1500mg levetiracetam ER (Keppra, Extended Release, meaning one dose a day instead of dividing it up into 3 doses of 500mg during the day) and 500mg of lamotrigine ER (Lamictal).I don’t have an option to take them when I want to. I have to keep a constant level of them in my system for them to work. I was on 500mg of regular lamotrigine and 1000mg of regular levetiracetam until this last summer when I began to have trouble. Up the levetiracetam by 500mg and take both as ER’s.

    I’ve been through a number of these mind altering drugs. All of them have side effects. I was on lamotrigine alone, but couldn’t sleep. My Dr. slowly cut down on it and slowly increased me onto levetiracetam. But being on levetiracetam alone had its problems, intense rage. Years later, not by choice, I’m on both. One side effect of both is depression. So one more pill for depression and sleep and another pill for sleep if I need it.

    Maybe in the future the Dr. will cut back on the dosage if I don’t have problems. To take my meds every morning at the same time, I have set a daily alarm on my cell phone.

    Take care.

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  • Posted

    Hello Winnie143:

      I agree that we know our own bodies.  My doctor explained to me that the medication I'm on has to be at a certain level to be effective in controlling the seizures.  I get my blood checked to see if the therapeutic level is what it should be; not too high and not low.

      There are so many side effects to all these anticonvulsants which hamper my thinking, especially, and of late have been giving me suicidal thoughts.  I would never harm myself, but the feeling can be strong, and it is from the anticonvulsants.

      I've tried lots of different ones, and am on a new one, along with my regular one.  The new one is a trial medication, and like you I do feel like a "guinea pig".  As you say it is fine for them to tell us to keep on the medication, but these meds for our brain sure wreck havoc with us, I don't care what they tell us.  In fact, I sift through what they tell us, and go from there.

      I've worked in the medical field so I feel comfortable with some of the information I find, but if I am not, then I trust my doctors to see what they have to say.  It is not a fun condition to deal with, and I got it because of having herpes encephalitis in 1997.

      I'm also talking with alternative medical people to see what they have to say.  Cutting out all sugar and carbs I find very helpful.  I want to check diet out more, and this could very well help stop seizures entirely.  In the meantime I do need to continue my medication.  We need to use common sense.

      I hope you continue with a good outcome, so take care.

    HorseLover

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    • Posted

      Hi Steve and Horse,

      Yes I take them 11 hours apart and Pheno seems okay with me, keppra on the other hand seems too much for my system.  I just sleep since been on Keppra.

      I am not unhappy I feel there are a lot of people worse off than me and not having a seizure for 4 years is a bonus.  I have taken 1 less Keppra and still no seizures.

      I am now going to try 500 x 2 a day whereas it was 750 x 2 keppra per day.

      I'll let you know how things go.  Good Luck to you Both xx

      Regards

      Win xx

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  • Posted

    Hi Winnie,

    I have had epilepsy since my early 20's, which neurologists state was brought on by my main nerve condition, Generlized Dystonia initially Focal Segmental Dystonia.

    I do have many problems which have occured over the years, some requiring further medication which to me was obvious, but I do agree with you regarding medication 'overload'. I had cancer, but only a few more months left until out of remission period, other medications I have to take is for an operation that nearly killed me twice. 

    Epilepsy though, I am on 1,800mg of Epilim a day - the highest the clinic will put me on is 2,000mg. But my Consultant Neurologist is trying to get the dosage lowered, and also the 150mg of Tramadol a day lowered, and also Amitriptyline taken out completely. But in order to do this I have to have my Botox injection levels increased and the period between them lowered. Actually, doing this is partically difficult, as it's lowering seizure drugs (then again dome of the drugs cause seizures!), Tramadol is difficult since I have these for pain relief, and they tend to make me tired, but alsp reduce pain.

    Lowering the Epilim would be a good start, but at first this caused a Functional Episode in hospital while I was having Botox Injections. So, straight away off to a bad start.

    Even though I am wheelchair bound I went to my son's girl friends party at the weekend, I thought great, flashing lights didn't bother me - however, that changed when they turned on the LED flashing show, caused me to have a nose-bleed. I would like to try and live a life as normal as I can, but it's not easy by a long way. Just being on here helps me throughput the day.

    Regards,

    Les.

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    • Posted

      Les,

      You have had it harder than me, I feel like a fraud now xx

      You sound like you are doing well, bliming lights !!

      Keep happy and why the botox ?  pass me some  ha !!

      Keep Happy Les

      Regards

      Win xx

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    • Posted

      Hi Winnie,

      Believe me Botox Injections are very, very painful - basically, they are injected into my neck muscles 4 on the leftside and 1 on the rightside, they are to stop muscles spasming - the dystonia causes my neck muscles to cramp and stay like it, it is very painful. Botox is a thick liquid, which is injected and pushed around a bit - it is also dangerous if the Consultant Neurologist injects it in the wrong muscle, which means I have to be fed by tubes - when I have them done you can hear the liquid being injected, it's a horrible feeling and experience.

      The you get celebrities that have Botox Injections to make themselves look younger! They must be mad if you ask me...lol The doses I have are about 10 times more in fluid. It is an injection you would not wish on  your worse enemy!.

      Yes, I had the nose-bleed until I was pushed outside, it soon stopped - course everyone panics when they see blood, so the lights all come on and the music went off while they got me outside. It makes you feel your responsible, but it is something I cannot control - Wish life was easier though.. smile

      Regards,

      Les.

       

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    • Posted

      Well Les look on the bright side you got noticed x.

      People see my wheelchair and tut at me, I pull a face at them lol.

      I was in Supermarket and my hubby was pushing chair and a woman with a trolley said "Bliming wheelchairs get in my way" I saw her in the next aisle and gave her a look but I wanted to hit her really lol xx

      Going training next week wanna come  ha ha  xx

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    • Posted

      disabled_les

      I have a comment on tramadol. I had knee surgery earlier this year and the surgeon gave me a tramadol prescription for pain. I took it for about a week and started having bed time and waking up auras. My epilepsy had been under control before this. I have a book on prescription meds and looked up tramadol. One possible risk of tramadol is Lowering the Threshold of a Seizure. I phoned my surgeon with his information and asked to be given different pain med. He, understandably, over the phone, didn’t want to prescribe one. I had an appointment with my GP and mentioned what had happened. He was surprised my surgeon didn’t know that epilepsy and tramadol don’t mix and wanted to know the name of the Dr. He gave me a prescription for Norco. My knee surgery also revealed it was compounded by psoriatic arthritis. I went to a specialist, which I still see, He was also surprised that the knee surgeon was unaware of mixing tramadol with epilepsy. Even after stopping tramadol, I still had problems with auras and a couple of seizures. My neurologist doesn’t think the later problems, months afterwards, were tramadol related after I stopped taking it. But as a patient, I think they are. Before taking any new med, I usually look it up for side effects, but I didn’t do it for tramadol. Sorry I didn’t.

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    • Posted

      LOL...

      Good on you! Winnie...

      People say they don't descriminate disabled people, but I see it day in, day out. At first I had to use a quad-stick, but standing still too long killed my back, so I tried my push-quad with the seat, not too bad... but lately it's been a case of if I'm going anywhere use the wheelchair! Now, I notice many people don't give you the time of day, and look the other way. For me it's comfortable and I need to get a larger one, my legs are like darn balloons somedays, feet, ankles and legs swell. Growing side-wards... lol

      Disabled get some really bad faces in the UK if you park your car a disabled bay with out a blue badge showing. Yet, you get some really inconsiderate people that think they are really something with BMW cars and phones. One week not long ago, we could not get a disabled bay because this blonde woman decided to park her car side ways across 3 disabled bays!!! I thought thats a joke!! So, has my daughter pushed me past her car I noticed her car window was open! So, I shouted at her "Oi, these are 3 disabled parking bays, you're not even displaying a disabled badge!" she said "Oh, sorry I didn't notice!!!" yes, I interupted he phone call. But disabled people with blue badges have to pay £15 including photoID for 3 years. My wife said she moved straight away after I shouted at her! LOL

      What gets me is these people are just so inconsiderate!  I would like to swap places with some of them and see how they cope! I mean how would they like trying to get up out of bed and dressed everyday of the week, and taking 45-60 minutes!! Unbearable pain, but I have to get up and be awake at certain hours, to take my medicatiion - trying to bend from lying down to a sitting up position is a real nightmare. I got pain clinic next week, and Ultraviolet scans of the prostate, my doctor is pretty sure it will be fine, but they are playing safe because of cancer in recent years, well nearly 7 years now.

      Winnie, is there a miracle drug we can all take and be bodied again? lol

      Regards,

      Les.

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    • Posted

      Les you sound a fighter so neve give up.

      I used to think I'd die as I had a bad time but my Sisters used to sing to me.

      I think keep happy, hard, but I remember when my Mum and Dad was alive how many laughs we had and how my family got me through it.

      I try and wake up think happy thoughts about old times and also before I go to bed.  Now no matter what smile Les !! my orders !!

      Good luck Les xx

      Win xx 

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    • Posted

      Hi Steve,

      I knew that Tramadol has threshold lowering abilities, I also take Amitriptyline, again another medication that lowers thresholds to Seizures.... I was put on them initially to surpress pain, because I was originally on Morphine, that to me is even worse. On one occassion I was rushed into hospital already been given two doses of Diazepam and then they gave me a full dose of Morphine, which in most cases should calm a seizure down. What they did not know was the seizure was not Epileptic, it was a Function Episode - which is very similar, but does not register on a ECG, therefore treating it Epileptic medication has no effect. The problem with me is I suffer with both. They weaned me on to Tramadol for pain relief, I have allergic reactions to some painkillers - especially high doses of codiene. Tramadol was suggested as a quick temporary method, eventhough I have been on them about 4 months now. My Consultant Neurologist knows the issues they can cause but it's like balancing pain, seizures and sleep - which is why I have an appointment on the 18th for the Pain Clinic.

      Thanks for information though, it all gets added to the online search and keywords of the website for other people to find out about. I guess its different with each person, like I informed Winnie and the disco party I was sat at last Saturday, the flashing lights didn't bother me at all - the LED lasers gave me a nose-bleed, I was fine until then - then everyone panicked as they do, trouble is you get used to things after awhile.

      Regards,

      Les.

      Regards,

      Les.

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