Side effects off tablets or symptoms of epilepsy?

[Deb12345]

Hello all,
I was just wondering how can you tell whether you are having side effects from your epilepsy tablets (I'm on 1000mg Levetiracetam - Keppra) or whether they are symptoms of your epilepsy? One side effect I'm sure I am getting off the tablets and that’s a lot of hair loss, which is very upsetting. Other symptoms include muscle spasms, pins and needles, headaches, tiredness, funny vision, feeling of down, no energy, bad memory etc. Not sure what type of epilepsy I have got yet. Still going under investigation.
Thank you for your time.
Kind regards
Debbie

[dfwtexas]

I am on Keppra too.I take 1000 mg twice a day.
I had problem with hair loss when I switched over to Keppra XR, but luckily I don't have it with regular Keppra. There are many on here that do have the hair loss on Keppra. I have terrible short term memory problems..neurologist told me that it is probably the results of the seizures and not the meds.
Overall, I am happy with the seizure control I have on Keppra...although they have adjusted my levels several times. I usually do not get headaches unless I have seizures. Are you on the generic?

[Cint]

Hi Debbie,

I'M on 3000 mg. of Keppra a day and don't experience the hair loss, but I do get those pins & needles sensations and occasional muscle spasms. And that down and out feeling is a well know side effect of Keppra, so if it becomes too overwhelming, talk to your dr. I've been on many meds, so some have caused headaches for me, but Keppra hasn't been one for me.

[alivenwell]

I'm not on the Keppra, but I have a memory like a sieve. I write everything down and pre-count meds. Maybe if the XR is replaced by a non extended release med, you may get some hair back?

[Deb12345]

Thank you for your replies. I will have a word with my Neurologist when I next see him regarding side effects etc. I'm not on any other tablets at the moment other than Citalopram for my depression. I hope you are all having a good weekend.
Kind Regards
Debbie

[Rick Rodgers]

Never took Keppra....have no experience with it. I'm having more problems with Lamotrigine than any other anti-epileptic drug I have frequented. See, it's like this -- Sometimes (everytime) before a seizure, I feel the same sort of dizziness, nausea as I feel from Lamotrigine. Can elude the seizure sometimes, but not always. I never had a problem with Lamictal (Brand Name). Yeah, I am pressuring my Neurologist for the authorization to go back to Lamictal. Still, hampers my activity more than I like.

Oh yeah, what's with the 'brain' emoticon??

[TempusFugit]

Hey there Debbie

I am also on Keppra (1500mg daily) and initially had more or less the same side effects you did. I have recently had an increase of Keppra (so the side effects have come back again - though to a lesser degree this time *touches wood*).

May I ask how long you have been taking Keppra for?

[Crystal11]

I am taking Keppra XR 3000mg and Tegretol XR 600mg a day. I don't notice too much with side-effects and am not tired. I get tired at nights since my highest dose it at nice.
I would definatley talk to neurologist about your side-effect issues. You have to consider seizure risk vs medicine effectivness and side-effects. What side-effects can you and are willing to tolerate? Let your neurologist know these.

I would ask your neurologist about how to tell a seizure from side-effect. I think seizure symptoms are more severe and only last a short time while med side-effect would be as long as your take the drug.. just some ideas here..
Please take care,
Crystal

[KelVarQ]

Deb, I don't mean to scare you in any way and remember everyone is different. I had a bad experience with Keppra and hair loss to the point where I had to stop the med. I was taking 500mg a day (250am and 250pm) and my hair started falling out pretty rapidly. Turns out after one month I started noticing bald patches and was then diagnosed with Alopecia Areata, which I'm currently getting treated with steroid shots in the head. I called the Keppra company and they stated, "Yes, we are aware of the alopecia and we found most people recover once they stop the med). It's been 3 months since I've been off the med and continue to lose hair, but it's definitely lessened and the dermatologist said I had to wait a minimum 3 months for the hair to stop falling out and to see any results from the steroid shots. So, I'm waiting since it's now around that time frame. Again, this does not happen to everyone so please don't be alarmed. I'm simply telling you this to be on the lookout in case it does happen. I know Lamictal made me lose hair but not nearly as quickly as Keppra and I didn't get any bald patches (alopecia areata) like I did with Keppra. If you're having the hair loss from all over that's not alopecia areata and when I lost it with Lamictal you were never able to notice. Yes, my hair did thin but it wasn't so bad where I was self conscious of it and I have thin hair to begin with. I think it wasn't as noticeable because it fell out from all over. So, just be sure to check to see if you have patches of hair loss (alopecia areata, which are bald circles) since that may constitute a bigger problem with the med. GOOD LUCK and again, PLEASE KNOW that everyone is different and this may not be your problem whatsoever. BE WELL

[Deb12345]

TempusFugit wrote: "May I ask how long you have been taking Keppra for?"

My reply: Hello, I think I have been taking Keppra since 31st July 09 or very start of August.


KelVarQ wrote: "I had a bad experience with Keppra and hair loss to the point where I had to stop the med".

My reply: Hi, I and others have noticed that my parting is getting very big and my fringe is very thin (looking a bit bald). It looks as though my hair is coming out all over. Last night my scalp felt quite sore on the right hand side of my head. The thing is I haven’t got an appointment with my Neurologist until the end of December – his secretaries fault (sorry) because he wanted to see me in 6 weeks time, now 2 (Mom keeps trying to make an earlier appointment with no success) and my Doctor can’t seem to help me because she has admitted that she doesn’t know much about epilepsy and the tablets, so I feel a bit stuck / helpless. I need to see my Neurologist soon in any case because my seizures still haven’t really stopped though have noticed some difference since taking Keppra. I am getting quite concerned about my hair loss and not sure if my bad headaches / head feeling weird is to do with the tablets or epilepsy symptoms.

Thank you all for your replies. I hope you are all ok and having a good day.
Kind Regards
Debbie

[moonchild1970]

I am not on any meds yet but I too have some of those symptoms.

[KelVarQ]

Debbie, I'm so sorry that you have to wait so long for an appointment. To be honest, I'm shocked that no one is there to at least see you in regards to just experiencing the seizures on meds. I'm guessing you are new to Keppra and I'm guessing E as well. Yes, I too had the sore scalp and if it helps any your hair should grow back once you discontinue the med, but it can take some time. Again, I was only on it for one month before taking myself off as well as a very low dose and my hair still came out, but IT'S GETTING BETTER!!! I know from years ago and Lamictal I lost a lot of hair and when I went off meds (after surgery) my hair actually grew back healthier and thicker than ever. So you're going to have to be patient and perhaps change meds since it sounds like it's not working for the seizures anyway. A lot of the anti-epileptic drugs cause hair loss (I know, it's unfortunate) but there are many people on here that don't take anything for their E due to all the crazy side effects and opt a more holistic approach. I'm NOT telling you to stop drugs and in fact you SHOULD NOT STOP without discussing this with your doctor. In the meantime, you may want to start checking out this site and learning about all the different approaches people are using to control their E. Since you're seizing now anyway on the drugs it certainly can't hurt. Perhaps you can call that nurse and tell her it's an emergency since you are seizing. Most neuros don't believe losing hair is considered an emergency and quite frankly feel it's not a big deal as long as you're seizure free. I would assume some with E feel the same way, but my seizures aren't as bad since surgery and I don't NEED to drive, although I certainly don't like that part. Again, DO NOT STOP YOUR MEDS without your doctors consent and your hair will grow back but you're going to have to be patient, which I know is hard when you're watching you hair fall out. Feel free to pm me if you want and you may want to start taking Biotin (vitamin) to help the hair. It won't stop it, but I think it ends up helping the new hair that comes in to be stronger. BE WELL. Kelley

[RobinN]

Some of the symptoms that you have are also due to a deficiency of magnesium. Unless you attempt to make some proactive choices and journal what works and what doesn't will you be sure.

Most side effect that my daughter had were fairly noticable when on medication. She is also a teen, so it was hard to know what was normal teen development at the time. However, most side effects were eliminated when the medication was discontinued. Many that lingered have been eliminated either with nutritonal changes or vitamin and mineral supplements. We continue to tweak as we learn what her body's needs are.

Healing is slow for us, but the results will be longer lasting, I am sure.

[Meetz1064]

want to check out this link to see what some of the side effects of Keppra are:

KEPPRA SIDE EFFECTS

Hope it helps some....

[Deb12345]

KelVarQ wrote: “I'm guessing you are new to Keppra and I'm guessing E as well”.

My reply: Thanks again for your reply. Yep I am new to E and Keppra. Had my first seizure in March and was diagnosed with E at the end of July, after further big seizures.
Mom phoned the hospital two weeks ago and just the other day to try and get my December appointment moved forward and the secretary said both times that she will be able to but I still haven’t heard off them. Plus received a letter yesterday saying that I was to see a Neuropsychiatry at another hospital on 13th October which I was pleased about but received another letter today saying that it isn’t now until 3rd November. What’s going on? Sorry, it’s just getting me down.
I went to see my doctor today because my sick note has run out and asked her for advice about the tablets etc but again she said I will have to speak to my Neurologist. Been signed off for yet another two weeks because she said I still wasn’t ready to go back. I told her that I will probably go back to work after the two weeks, because I have been off now since the end of June and it’s getting me down. I know it sounds stupid but even if I don’t feel good after the two weeks off, I still want to go back to work just to try it out because how do you know how you are going to cope if you don’t try it out first. Am I doing the right thing? I know I am going on a bit.
One thing I am happy about is, the past 3 days I haven’t felt too bad which is good for me. Hopefully this is a start of a new beginning.


RobinN wrote: “Some of the symptoms that you have are also due to a deficiency of magnesium”.

My reply: Hello, thank you for your reply. I asked my doctor about taking magnesium tablets and she told me not to. However I was advised to take more green leafy vegetables and I am having more foods which contain magnesium in them.


Thank you all for your replies. I hope you all have a good weekend.

[Deb12345]

Result. After my Mom phoning the hospital around 3 or 4 times my Neurologist appointment has now been moved from December to this Wednesday 7th October and I have also got an appointment to see a Neuropsychiatric (think that’s correct) on the 3rd November. I feel sorry for my Neurologist because I have got a page of questions I would like to ask him. lol I might have to leave them with him to answer in his own time and post back to me.
I hope you are all good.
Best Wishes
Debbie

[Eve]

I am finding all these comments very interesting. I was just recently moved up to 1500mg of Keppra XR. In the last 3 weeks I noticed my scalp was itching like crazy so I thought maybe it was the shampoo and I switched over to a Tea Tree oil shampoo it releived some of the itching symptoms. I used Paul Mitchells Special tea tree shampoo. It medicates the scalp and makes it feel good. Also my skin has been itching.

I went to the dermatologist and they gave me itching cream (cortisone) which I stopped taking and a antihistamine (like Benadryl). Those didn't help. So now they are sending me to an allergist tomorrow to check my blood. I said something about it to MY neurologist AND HE HAD ME GO DOWN A LITTLE ON THE ZOLOFT TO 75 MG BUT HE indicated that he didn't think the zoloft or keppra xr was causing the itching.

I am also taking calcium Vitamin D and Magnesium. I take 500 mg of Mag along with the 1000 mg of Calcium along with Vitamin D. I am taking 16000 units of Vitamin A and a super B complex that has the B-6 in it.

About the only good thing is that once I was moved from 1000 to 1500 Keppra Xr the seizures Stopped.

I just wish I didn't have to deal with all this other crap.

[KelVarQ]

Eve, I'm not sure of the daily recommended dose for vitamin A, but I do know that too much vitamin A can cause scaly itchy skin as well as hair loss amongst other things. Vitamin A is definitely that one vitamin that you can become toxic on if you take too much. You may want to check into that just in case.

[Eve]

Thanks Kel for the tip. I went to the Allergist and she took some blood tests to see what I am allergic to, I should get the results next week. She said she did not think that I had a drug allergy and wanted to then wanted to know if by any chance if I told the neurologist about it. I told her I did and he just rolled his eyes and gave me one of his looks indicating he didnt think it was in his specialty.

However she told me to stpop all my supplements including the Vitamin A, B and the Mag. She told me to only take the supplements that had been specifically prescribed by the Dr which is the Cal and Vit D. So I will continue the Cal and Vit D.

She thought the Scalp itching might be Dust Mites or may be an internal problem so now I just await the blood tests.

[alivenwell]

It might be a good idea to get one of those mattress covers that encase the entire mattress. They are designed to control dust mites. They also have similar covers for pillows. Throw the old pillows away. And, go for a HEPA air filter. It really helps.

My dog has allergies around this time of the year and also gets very itchy no matter what type of shampoo we use on her. She is placed on a steroid for 2 or 3 days and that usually helps her. Her vet thinks that she's allergic to mold, mildew or a lot of dust from leaves. I often wonder about those lawn treatments. They may be causing a lot of her distress.

I also have a vacuum with a HEPA filter.