Epilepsy Side effects

[dori22]

Hi, I'm new here. I have had epilepsy my whole life but I wasn't diagnosed until I was 17 with primary progressive generalized epilepsy. At that point I was having an absance seizure every three seconds and had no short term memory. I also have grand mal seizures occasionally. My prescription is 1500 mg of Zarontin 300 mg lamictal, and 200mg trazadone at night.

I have been on my medications for five years now. they make me sleep deprived, nauseous, vomit routinely, and anxious. I just moved to hawaii because I thought the lack of stress would benefit my health and it really has. After a while my stress was so removed I weaned off of them and was seizure free for the past three months. the past few months have been the best sleep i have had in years.

Still I went back on my epilepsy meds last week and really want to stick with it because I know if I can get my sleep under control, they're great. Zarontin probably does the most to me, I can't eat, I become so nauseous when I do I struggle to keep my food down so I stick to bland foods like banana, avocado, eggs, and rice and sometimes I still can't manage and end up "tossing my cookies". After a certain point of lack of sleep i lose entire control of my emotions and cry randomly, its embarrassing to say the least and that amount of sleep maybe two hours a night if i'm lucky can't be healthy.

Lamictal makes me anxious and trazadone makes me groggy.

My new doctor is aware of all this. Any suggestions that have worked for you perhaps? I'm open to almost anything. I use to smoke pot and that really helped with the vomiting and the sleep but its expensive and I can't exactly afford it right now.

 

[coloredCYANIDE]

Well, for starters moving to Hawaii sounds lovely. Mad jealous here. Pittsburgh is so damn depressing, haha.

Nausea is hard to get rid of with any given medication, and the many psychoactive metabolites of cannabis are incredibly helpful to some in those circumstances. However, it is illegal in most states, no matter the reason. It's simply too common, apparently easy to grow, profitable, and would destroy people's need to buy everything from antidepressants to NSAIDs. I hear CA's economy isn't doing too well even with medicinal legalization. Who knows, it's probably a sociopolitical issue beyond me.

Immunologically speaking smoking does have some pretty negative effects, such as downregulation of receptors needed for T cell differentiation and activation, and attenuation of alveolar macrophages; in short, why you'd get upper respiratory infections more often. I've been reading about associations in slowing clearance of certain HPV serotypes as well, but this is restricted to in vitro studies. Use of any psychoactive substance is bound to have some positive and some negative effects; it is a drug like any other out on the legal and/or illegal market and should be treated as such.

Have you looked into potentially receiving Marinol (synthetic THC)? It is a legal form of the same molecule and I believe it acts in the same way, binding to the anandamide receptor, signaling for hunger through the hypothalamus, in addition to way more mechanisms I'm not qualified to talk about. No smoking involved either. But I haven't seen any studies showing its efficacy; never really looked into it, but ask your neurologist if you're sure THC really helps.

As far as sleep try just having some warm milk beforehand, eat some turkey for the tryptophan, etc. Work out as much as you can and be tired by the end of the day! Physiologically you should start to feel hungry, and your body will need the rest. Avoid stimulants wherever possible, but coffee in small doses can be a nice mood lifter, same with green tea. Those will also act as appetite suppressants.

There are some random ways to help yourself out there too. I found that when showering, only letting cold water hit your head helps me. Pranayam and yoga are both ways to really center yourself, as under ayurvedic medicinal theory, lack of oxygenation is the root cause of most diseases. But it requires tremendous lifestyle changes to take full effect. The bottom line is that you need to find your real triggers rather than letting the meds destroy you. From what you're saying, it has to be more than stress. Get some exercise, tire yourself out, and you'll HAVE to sleep. As far as nausea... there's meds out there for it, but maybe being tired will also make you hungry. It's sad to see someone who has to take one thing, then another Rx to cancel out side effects from the first one. Seems pretty profitable on at least one end I guess...

Just don't give up hope. The crying episodes will tear you apart from the inside so slowly, and every time you're stressed from it you actually do damage to your own DNA; the repair mechanism isn't perfect, considering it's about 30 billion nucleotides in the "right" order.

 

[Ruth]

Hi, I'm new here. I have had epilepsy my whole life but I wasn't diagnosed until I was 17 with primary progressive generalized epilepsy. At that point I was having an absance seizure every three seconds and had no short term memory. I also have grand mal seizures occasionally. My prescription is 1500 mg of Zarontin 300 mg lamictal, and 200mg trazadone at night.

I have been on my medications for five years now. they make me sleep deprived, nauseous, vomit routinely, and anxious. I just moved to hawaii because I thought the lack of stress would benefit my health and it really has. After a while my stress was so removed I weaned off of them and was seizure free for the past three months. the past few months have been the best sleep i have had in years.

Still I went back on my epilepsy meds last week and really want to stick with it because I know if I can get my sleep under control, they're great. Zarontin probably does the most to me, I can't eat, I become so nauseous when I do I struggle to keep my food down
Lamictal makes me anxious and trazadone makes me groggy,

Hi Dori,
First, I want to welcome you to CWE. Bernard made this forum out of love for his wife, Stacy. That love has permeated throughout all of forum.

I am allergic to Zarontin. Lamictal works for me. I have never been on trazadone. Have you talked to your neurologist about the problems you are having with your meds? That is the first thing you need to do.

Do not try to take yourself off of the medications, as that can make it worse.

There are a good many other medicines for epilepsy. At first, you are on a medicine merry-go-round. In other words, your doctor has to try different medications for you. When he finds ones that will work, you will feel much better.

As far as pot is concerned that is not such a good idea. It is legal in CA. However, it is illegal by the Federal Government. In CA, people who grow it, have it stolen or someone gets murdered over it. I have nothing to do with it.
When a doctor writes a prescription, the person takes it to a pharmacy that CA has okayed.

Once in a while, the Federal Government closes them.

Hawaii is a beautiful place to live. However, if you are allergic to your medications it will not matter where you live.

I hope that I have been helpful.

 

[dori22]

thanks

thank you so much to the both of you. I already feel better just feeling part of a community like this. It actually feels great just to talk with other people who can relate in their own way.

I was on Marinol a few years ago and it worked pretty well but its been a few years and there are a lot of politics surrounding its use i'm sure in hawaii just like there was in the midwest so I'm not too eager to go that route quite yet. I think you're right though and going off of them probably hurts more than it helps.

I forgot about the warm milk trick. I use to love it but its 7 dollars a gallon on the island i live on so i'll order some tryptophan from swanson's. I take valerian root right now which is good for epilepsy but tryptophan would be great.

I work on an organic farm and I just found a new yoga instructor so the exercise bit is pretty good.

Ruth, I have (talked to my doctor) but there hasn't been much done other than new medications for sleep but not new epilepsy medications. They have said they don't want to alter them right now since these have worked and since I am "young and can still have children". acupuncture has helped the most and tai chi, and qi gong, meditation. Thats beautiful I didn't know that, about Bernard and Stacy.

I actually feel pretty tired right now and think i'll sleep well tonight. I'm not sure what i did differently today but its a good day. thanks for all your help, both of you.

I haven't given up hope. today i was talking to my dad and I started crying while i was talking but I told him to ignore the crying because i didn't feel upset, it was more like i was so tired that my body was just seeking a release so I let it pass and we laughed about it. fortunately people are pretty understanding.

thanks again.
off to bed. sweet dreams

 

[Krista2882]

At that point I was having an absance seizure every three seconds and had no short term memory.

Is that why your username is Dori? :lol:
Anyway, welcome to the forums!

 

[dori22]

haha no just a coincidence, thats my name. i do love ellen degernes though

 

[Nakamova]

Hi dori22, welcome to CWE!

Have you just started back on all your meds at the same time? If so, it's possible that the side effects may abate a bit in a few months time. That was my experience with Lamictal -- anytime I make any sort of transition on it I get side effects that go away once I've been at a stable dose for a few weeks. With 3 meds, you're getting 3 times the fun, and 3 times the chemicals for your brain to adapt to, so patience may help. I'm sorry about the eating issues. I had those when I was on Zonisamide. I found that non-acid foods were easier to eat. And foods with higher water-content like watermelon and salad veggies.

Best,
Nakamova

 

[dori22]

RE Nakamova

Thank you
I never in my life expected this kind of response, so much support. Iv;e felt so lost and this has made me feel truly so much better, knowing i'm not my only sounding board. I was telling my dad about this this morning. I'm so grateful

No, I am at about half the dosage of zarontin when I'm at the full dosage I'll add in trazadone, and then lamictal after that.

I did notice yesterday that I kept strawberries down and the tropics have quite a lot of fruit so I'll be sure to do more of that.

Iv'e taken about 8 days off work/volunteering now but I'm really gonna try and make it in tomorrow.

thanks again