New

[trapped]

Hey everyone! I'm a 26 year old female, I've been off and on AED's since I was in high school... tried Depakote, it helped some but the bloodwork wasn't looking too good after a bit on it, so was switched to Tegretol... did GREAT on it, til I kept getting every infection I could possibly catch, the doctors blamed in on the Tegretol, and I was switched to one other one that I don't remember, it started with a D, always made me throw up though and being a young brat I said screw this, I'm going off this stuff... it wasn't too bad cuz I was on ativan and such for anxiety anyway, so I'm sure that helped...

Then got put back on it a couple years ago when I was having daily seizures again after contracting Lyme disease... tried Topamax that time, and was on that for a while. I did great on that, it made me sleep with the nighttime dose but wasn't too bad.... until I ended up in the ER, I had gone to the eye and ear hospital to get my eyes looked at cuz my vision was screwed up and my eyes hurt worse than I even knew they could hurt... they did labs on me there, rushed me over to the main hospital, took an entire day til someone could explain to me what was going on in terms I could understand- basically the Topamax caused my kidneys to have issues filtering stuff and my blood to turn acidic. Spent an entire month in the hospital, being switched to just Neurontin, Klonopin, and Ativan. This past summer stopped the ativan, was just on the neurontin and klonopin. Then had an EEG about a month ago, which showed a ton of left temporal lobe seizure activity. Got put on Keppra twice a day. It's okay, I'm at least not forgetting words like I did on the Topamax, BUT I'm wicked tired all the time, have no appetite, and am constantly nauseated (I'm doing okay in the mornings now because I had an asthma flair so got put on prednisone, and zofran cuz prednisone makes me vomit- the zofran helps with the nausea up til the afternoon at least, then I'm miserable again til I fall asleep for the night). Is that typical of the Keppra? I feel like I'm stuck on it though, cuz my neuro says everything else I haven't tried he doesn't know if I will respond well too and thought the keppra would be the one to go with for the fewest side effects. I don't know what else I could do, they won't let me try to get off these meds again yet since I seem to have increased "fainting" spells (which are apparently actually seizures, I never remember anything from them tho, just all of a sudden I'm waking up on the ground and feel like crud).

 

[momof3boys]

Im on Keppra XR at 3000mgs a day. Have you tried taking a Complex B Vitamin to help with the Keppra? I was told about the vitamin in November of 2010. Ive heard alot of people talk about frustration issues, and they say by taking a vitamin like this can help out alot.

I get tired easily too. I try to get as much sleep as I can. I just had a pretty good scare a few days ago when I had a seizure in my sleep, due to lack of sleep the nights before.

If you have any questions, please feel free to ask me anytime!

 

[trapped]

Thanks for the welcome and advice! I've been taking a B Complex vitamin for a while now, I have a genetic tendency towards low B12 levels (and being vegetarian doesn't help that much), I used to get shots of B12 every month, then started taking a B12 plus B Complex vitamin, and now my doctor just does labs regularly to check on my B12 levels (since we need to do labs every month or so to monitor my chronic anemia, that they are thinking may be a result of some autoimmune disorder since it's getting worse, they'll have more test results back in a couple days), and my vitamin B levels have been doing surprisingly good the past couple of months, so I haven't had to have any of the shots lately (if they start to drop low, then I have to stay on the vitamins and have the shots again til they re-stabilize).

I too have noticed the seizures tend to be more frequent if I haven't been sleeping enough, or if I have an infection of any kind- must be related to some stress on my body or something. Lately the adjusting meds every week is exhausting- to go through, and to remember what to take and how much! Since high school I've been back and forth between medications to raise my blood pressure and medications to control seizures... they used to think my "fainting" spells were purely a vasovagal blood pressure reaction, especially after me having multiple positive tilt table tests. But then neurologists got involved when the blood pressure medications didn't help completely, and said seizures, based on some EEG results. But then I had a normal EEG, so they said maybe it wasn't... now I see a neurologist that specializes in autonomic dysfunction, so he can treat the seizures and vasovagal, he said since I had lots of seizure activity even while on seizure meds, that means the seizures are definitely a contributing factor, and that my symptoms after a lot of the passing out seem to be post-ictal, and thinks it's a combination of the low blood pressure AND seizures causing me the problems, I don't like being on salt tablets or medications to raise my blood pressure, so he's been trying to decrease those as much as possible and playing with the seizure meds to try to find a combination of some sort that controls the symptoms but has the fewest side effects. I just don't know how much more I can take of the adjusting the medications though, sometimes it gets really difficult to be compliant with all the meds.

 

[Nakamova]

Hi trapped, welcome to CWE!

Hang in there! It can be tough fiddling with meds, trying to find something that works without seriously affecting quality of life. Are you on three anti-seizure meds now, or just the Keppra? If you're on three, maybe eventually you can taper off two of them, to try and help with the fatigue. Also if you're not able to eat (especially in the a.m.) due to low appetite and nausea, that's going make you more tired, and put you at risk for low blood sugar. Some people report appetite issues with Keppra, so that's probably what's doing it for you.

Best,
Nakamova

 

[trapped]

Thanks Nakamova,

I tried to force myself to eat a little bit this morning, but all I could do was nibble on some granola and had half an apple, I just wasn't too hungry, it's been a bit better in the mornings since I take my anti-nausea med in the mornings with prednisone, and that helps with the nausea, tho I still have no appetite. Though honestly, I think I have to call the doctor or pharmacist soon this afternoon, cuz I just realized I don't even remember if I took the Keppra this morning, and don't know if I should take another dose just in case, or wait til tonight to take it like normal. I think it should be fine to skip it, since I'm also on Klonopin and Neurontin as well so those should provide protection (well, in theory, tho I've been having lots of seizure activity even with those two, which is why the Keppra was added). Prednisone and Keppra individually seem to make me more irritable, so I'm not thrilled about taking the Keppra today, cuz even with being on medications to prevent hives and allergic reactions, I still had my worst anaphylactic reaction to date yesterday, and this morning the hives started coming back- hives, plus Keppra, plus the prednisone does NOT equate to me being a pleasant person to be around! I'm hoping the doc says don't worry about this morning's dose of Keppra if I may have not taken it (usually I take all my meds at the same time in the morning, but this morning when I woke up with the hives starting again and shortness of breath coming back, I took the prednisone and antinausea medication and antihistamines right away, and just can't remember if I remembered to take the Keppra after I woke back up after going back to sleep for a few hours). I think the doctors had hoped the prednisone would have the side effect of making me have a little bit of an appetite again while I am on it, but it usually seems to have the opposite effect on me just cuz even with the zofran I'm still nauseated on the prednisone (but at least the zofran stops me from vomiting up the prednisone). I think the ultimate goal is going to be seeing if we can find something like just the Keppra or just some other drug, and have that eventually be all I'm on instead of the neurontin and klonopin too, since judging from my most recent EEG the other two meds weren't helping a ton anyway.

 

[Nakamova]

When I was on Zonegran, I had zero appetite, stomach pain, and nausea, so I'm very sympathetic! I couldn't eat at all in the mornings, and when I did manage to eat, it had to be something very low-acid, like watermelon. Being hungry all the time made me quite irritable (and I'm a very mellow person), so that may be part of what's making you cranky, in addition to Keppra's known tendency to cause "Kepprage."

Eventually I had to switch from the Zonegran to Lamictal because the low blood sugar caused by the Zonegran actually triggered a seizure. I'd suggest Lamictal for you, but if you tend to have allergic reactions, it's probably not ideal in that respect.

I hope you hear from your doc soon regarding the Keppra dose -- usually they say just to wait until your next scheduled dose rather than run the risk of doubling up, but it's important get your neuro's opinion on this if at all possible.

 

[Endless]

Hi, Trapped, and Welcome!

I have problems with severe nausea, too. I don't know if it is from the Lamictal, the Diamox, Migraines, or another neurological disorder that I have. I'm on zofran, but sometimes it doesn't even make a dent in it. I made homemade ginger water and it helps a little bit. I sip it all day. It's just freshly grated ginger in water with a teeny tiny bit of stevia. If you want you can use sugar and carbonated soda water. That makes ginger ale. Antacids (like tagamet, prevacid, etc.) helps some, too.

Do call your doctor and tell her that what you've got isn't working for you. There are more extreme medications, like a topical-type anesthetic that you take orally. Not great for long-term use, but it helps temporarily, and its nice to have some rest and relief from the nausea for awhile. There are also stronger anti-nausea drugs that they use for Chemo patients, but they knock you flat. Since many of us are knocked out by our meds anyway, I guess that wouldn't really matter so much.

I hope you feel better soon.

 

[jyearta]

I'm on dilatin and klonopin - have tried many medic. and could not handle to side effects.
I was put Keppra at one time, and I too didn't have an appeite, which at first, I thought Great, I will be able to loss weight.
But more side effects kept coming on me.
Now that I think back on it, my Dr. was taking me off klonopin and another medic. (can not remember the name) at the same time. --this is when the seizure diary come in handee.

Keppra has worked for some people in the forum. Could be it needs some more time.

I also am b-12 defic. due to long time use of dilantin. If you don't mind me asking what or how do you handle to chronic anemia?

 

[trapped]

Thanks for the tips! Neuro said that I could just skip this morning's dose and make sure to take it tonight, especially with the recent hives and allergic reactions, they are a bit afraid that the Keppra could be in part to blame since my asthma and the hives started getting worse around the same time I started it, so he said that's something to talk to the allergist about tomorrow but wants me to keep taking it since it's not clear if it is what is causing all of this or not... he did say if I kept having issues we could try another AED but with having tried others in the past, and the Keppra's side effects do seem to be more mild than the others (tho starting to get worse, where I was told they should get better over the next month or so) and I'm afraid of having a worse reaction to anything else we could possibly try.

Good to know there are stronger anti-nausea drugs too... the zofran typically works for me, but I may ask if there is something else we could try if the nausea is still this bad once I finish the prednisone, since we know the prednisone makes me vomit without the zofran, I can't tell if it's mostly the prednisone, the combination of the prednisone and the Keppra, or if the Keppra is playing an individual role in the nausea at all.

Jyearta- I've been increasingly more anemic since January... well possibly a little before then, but it wasn't that bad initially, January was when I really noticed it, and now it's worse since my hemoglobin yesterday was only at 6.2 and the other levels are worse as well, plus all my blood cells are abnormally shaped, which is why they are thinking autoimmune. I've been on iron supplements since January, first the oral tablets, now a liquid that they thought would be better absorbed. I see my PCP on Wednesday this week though, and think I will tell her I am DONE with the liquid iron- it tastes horrible, makes me more nauseated, causes stomach pain, and I've been doing it for the past two and a half months or so in hopes it'd help avoid any IV stuff, but at this point I'd rather have an IV and have it done with! I just seriously cannot tolerate the iron any longer- usually I would, usually I'm the patient that goes along with every medication even if it makes me feel miserable because I don't like to second guess the doctors nor tell them what to do, but I can't tolerate the iron any longer. Actually, perhaps tonight I will look up my hematologist's number and give her a call and let her know I'm done too, she's been working with my PCP to try to coordinate the best plan of action (this is a new PCP I started seeing a few months ago, even when my hemoglobin dropped below 7, the old PCP told me wanting to see a hematologist was unreasonable and if I didn't want to just take iron tablets til it got better I could find a new PCP- so I did. The new one is great, a lot more willing to work WITH me and get my feedback, and she was surprised I wasn't referred to hematology sooner with how off all my labs have been for so long)... I feel bad for having to say enough is enough, but seriously one of these meds has got to go, the pulmonologist says it can't be the prednisone (yet, I have to finish out the dose, which may get extended tomorrow) and the neuro says absolutely there is no way I can discontinue his medications right now, so I figure the iron doesn't seem to be helping anyway, only causing more stomach discomfort and nausea, and I can only tolerate so much- I guess it's better for me to be honest with them about the side effects on all these things being too much than to not eat cuz I feel too sick or just stop taking stuff cuz I'm tired of all the meds.

 

[jyearta]

I feel so bad for you. You are really going through a hard time.

on a post early by momof3boys, maybe the vit. b will help.

I hope you get in touch with one of these Dr. AND that they will help you.

I one to be tell someone to just keep trying.

 

[trapped]

Thanks Jyearta,

I haven't called the hematologist yet, I am debating if I will try to do it this afternoon, I'm deathly intimidated by her (she is my one doctor that is pretty distant, and is also a big name in the field, and those things add on to my intimidation, in addition to just being afraid of doctors in general, but she is wicked good) and have an appointment with my PCP tomorrow afternoon so am debating if I can/should wait til then to mention I stopped the iron cuz I can't tolerate it any longer.

I briefly mentioned something to the allergist today. He said they may recheck all my labs and may have to do IV iron, which he is worried about doing, since I'm on so many medications, and went in COVERED in hives still today- his words exactly were "that's really impressive- and pretty cool, with your medications, you shouldn't be getting any hives, medically, you're pretty fascinating" haha, I wasn't so much as fascinated or impressed, mostly just annoyed with the hives. He is going to look into if the Keppra can cause a bigger tendency towards hives. He said the fatigue and being tired all the time and the nausea he has heard are almost to be expected on the Keppra, his hope is I will adjust to the medication but if not he wants me to call him or the neuro so they can either change the med, or figure out something to add on to counteract the side effects... if he comes across anything linking a positive relation between the hives and asthma and the Keppra, he said he will give me a call, I've been reacting to more stuff ever since starting the Keppra so that's somewhat concerning to him but I told him at the same time I am also afraid of trying other meds since I've had worse side effects from other seizure meds in the past so don't want to switch unless it's medically necessary or unless there's just not enough espresso in the world to power through the being tired and other side effects. He said it may not be highly likely for the Keppra to trigger an increase in hives and asthma, which is maybe why the neuro dismissed it at first, but he said me coming in covered literally head to toe with hives, while on 100mg of Benedryl a few times a day, two 180mg tablets of allegra in the morning, 20mg zyrtec at night, claritin throughout the day, prednisone, etc is even more unlikely, yet my body managed to pull it off, his philosophy is just cuz it's unlikely doesn't mean it is impossible, my body has done the "impossible" multiple times before in the medical sense.

 

[jyearta]

Benedryl a few times a day, two 180mg tablets of allegra in the morning, 20mg zyrtec at night, claritin throughout the day, prednisone, etc is even more unlikely, yet my body managed to pull it off, his philosophy is just cuz it's unlikely doesn't mean it is impossible, my body has done the "impossible" multiple times before in the medical sense.

you can take Benedryl - is't is a antihistamine--These cause me to have seizures.
Keppra didn't affect my asthma.
Boy, I hope you get the help your needing.

 

[trapped]

I seem to do okay on the antihistamines, though I am debating if I should call the doctor either this weekend or Tuesday... last night, had what a friend (who is a doctor) said looked like it could be a seizure... But it was different from my typical ones, so I'm still not sure what was going on. It started with just my left eye getting blurry, with "flickering" type movements around the edges of my vision. I don't ever get migranes or even normal headaches, but when I called my friend initially, she said it could be an opthalmic migraine. Then got home, and when I looked in a mirror, noticed the pupil that the vision was screwed up in, was over twice as large as the other eye! Called my friend back, asked her if she could come over- she got to my place pretty fast, planning to reassure me it was nothing... she got a little worried when she saw me though, my left eye was fully dialated and the other pupil was super tiny. She almost took me to the ER, but we tried having me take my Keppra and some ativan first, and before we got to the ER all the issues with my vision resolved and my pupils became equal sizes. Not sure if it was a seizure like she said it could have been, since that's not what typically happens, or if it was related to something else, like maybe the IV iron infusions I started getting this week (had the first one Monday, felt like I had the flu for a few days after and was in a ton of pain, had the second one today, got really dizzy during it and it hurt a lot going in so they had to slow it down so it took 2 hours instead of 1 to go in... still pretty nauseated again now, likely from the iron).

 

[jyearta]

.. still pretty nauseated again now, likely from the iron).

I hope you get to feeling better. Is the Iron for a deficiency?

I don't know if this will help you with the nauseat, I eat pineapple slices, it helps me. I try to not add another medic. if I can.

There are so many diff. kinds of seizures, I didn't realize until I join this forum. and the medic. react to each person differently.

When my dilantin level gets high --my eyes will dart from side to side FAST. It can happen several times one right after the other, or it might happen once.

Since I have been on dilantin --in all my pictures, my eyes look like someone just sared me.

Once when I was in the hospital --not related to E. --my Dr. had all the students Dr. ( Emory-A teaching hospital )-to come over and look at my eyes, he said this is due to dilantin. Now did I ask what they saw? NO

I am so glad your Dr. friend is there for you, this has to be a comfort for you.
I have never gone though what you are going through.

Let me know what you find out. and I do hope you find out soon for you.

 

[Paint Master]

Nakamova, I am new to CWE. I am 57 years young and have only been aware I was having seizures 2 years ago. I thought these "weird feelings" were just that. deja-vu, stomach indigestion always happened when I was "stressed out." Mostly when money got tight. I had been seizure free for 1 1/2 years and may have had a seizure 2 weeks ago. My Dr. has incresed my meds to 200MG of ZONISAMIDE from 100MG, a Generic for ZONEGRAM. I am having blood work done tomorrow morning. Can anyone tell me what I should ask about the results of my test? Could I experience a lack of appetite. low blood sugar and times of being down rite irritable?

 

[Nakamova]

Hi Paint Master,

Zonisamide may turn out to be just fine for you -- every person reacts differently to the meds. When you are changing meds or doses, it can help if you keep a journal so that you can note any possible side effects.

You should discuss any potential side effects of Zonisamide with your neuro. And ask about having your serum bicarbonate measured periodically, as recommended by the FDA. See:
http://www.fda.gov/Drugs/DrugSafety...mationforHeathcareProfessionals/ucm095251.htm

 

[tinathesingergirl]

I was told by my neurologist that I should avoid allegra becauase of the interactions with the keppra and the toppamax that I take. funny that so many of you are taking that and are having problems with hives. It could also be a problem with any generic prescriptions you are taking. I very often have issues with generics and certain brands of generics and have to have doctors write medically neccessary on the scrips for me also my friend Heidi who's dad is a phamacist has told me that some people have issues with drugs in pill form but not in suspension form penicicilion for example. Heidi has an allegeic reaction in pill form but not in suspenision form. So maybe ask the pharmacist or the doctor if that is an option for you. Hope this helps.

Tina