medicated but not diagnosed...

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poshsouthernbird

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Can anyone help does anyone have experience of this..

Hi, I'm new here, ive been having what i think are tonic clonic and absent seizures since the beginning of months now (though looking back with now more awareness I think it had been coming on for a long time) Ive been put on 100mg Topiramate whilst waiting for a diagnosis, im struggling with the medication, its making me tired and drowsy and my short term memory is shot to hell. I feel like im having alot of auras lately and im struggling to work out what are auras and what is the side effects of the medication, I have times on leaving the house of feeling really really anxious and panicked, and other times at college where I feel 'over aware' like im working on a different level of awareness or conciousness-like i almost have to stop myself from doing something inappropriate in class, its hard to explain...and on other days I feel like I have energy in myself and I feel like myself pre this happening, but that my brain is tired and that my brain is...'heavy' and needs a rest. In general in doing alot less that I was a few months ago, and Im struggling with what I am doing. Is this normal, will it wear off? What does it mean for the medication or the dose that i feel like this but im still having seizures? Im terrified of going on other seizure medication as ive read you gain weight on most of the others...it didnt occur to me that after starting the medication I would continue to have seizures, I just thought it would all go away and everything would be fine...ha... and what about drinking on this medication? My lifestyle has seriously changed in the last few months, some people really seem not to understand my polite declining to go for a drink or whatever, but I would just die of embarassment having a seizure in the pub, especially if it wasnt with one of my really close friends, but still...

These are most of my fears...and not being able to go to Uni in september...Im sorry if I sound sorry for myself-that more than anything is what I am trying to avoid!!

Thank you for listening, I feel so confused at the moment and not wanting to burden people who are already worried and don't understand :-)
 
Welcome! First of all, even though it's scary when you start having seizures, for the most part people can live very normal lives. I was diagnosed over 30 years ago when I had a tonic-clonic seizure, and have been on meds ever since then (Dilantin for about 15, then mostly Lamictal for the last 15, with brief trials of others that made me feel like s--t so i stopped 'em and went back to the lamictal. (I'm on Lamictal and Trileptal now) I've never had issues with weight gain, but I do get tired and dragged out if my levels are too high. It's a real balancing act to maximize seizure control and minimize side-effects. i still have partial seizures, and have had for these last 30 years. probably over 10,000 in all. In that time, though, I finished my bachelor's degree, got a Masters degree, have held several responsible, professional jobs, and now own my own business. I remain quite active and have pretty much no limitations. I suppose I couldn't be a commercial driver or a pilot or an astronaut or such, but I'm OK with that.
The docs have never figured out what causes my seizures and probably never will. Oh well.
As for alcohol, it's probably best not to drink anything at all for a while while you are getting your meds balanced and figuring out what's going on. Alcohol can change the effectiveness of your meds one way or the other, and it can change your seizure threshold in unpredictable ways, too. Best to leave the booze totally alone for a while. It makes it easier to just be off it 100% than trying to decide when to drink or how to tell certain people you're not and others that you are. That makes sense, doesn't it?
Well, that's that. Bottom line, I would say, is not to freak out about it. You will probably be fine. One warning: DON'T go off your meds by yourself, thinking that you are OK. That's a great way to have more seizures. Also, keep a diary of when you have your seizures and events that may be around them to see if you can see any patterns. Good luck, and keep in touch!
 
Hi Poshsouthernbird, and welcome!

I concur with Arnie on the advice regarding drinking, and the reasons for doing so. The next time you see your neurologist, you can discuss whether it is safe for you to drink.

As far as weight gain, our son has been on a number of different medications (Keppra, Topirimate, Lamictal, Depakote, Zonegran, Diazepam, Clonazepam, Fresium) and the only one that tended to cause him to gain weight was Depakote. However, of those meds, only 2 have successfully controlled his seizures (Topirimate and Zonegran). It often takes a period of trial and error to find a med that works with seizures.

Since you are still in the diagnosis phase, it may take awhile to find the best med to suit your condition. Some of the side effects of medications are temporary, but others stick around. The memory loss with Topirimate (especially recalling words) is one of the side effects that will probably linger.

When you are taking Topirimate, make sure you drink lots of water, as this medication can cause acidosis and kidney stones. One symptom of acidosis is fatique. Try to drink a cup of water every hour to keep well hydrated.

Don't worry too much about uni -- September is a half year away yet. You have time to work with getting meds adjusted. Lots of people with epilepsy do just fine at university. You might want to take a lighter load to start out with, though, because stress can tend to induce seizures.

Also...you might want to consider some dietary approaches to controlling your seizures -- if you are a teen, you are young enough to be a candidate for the Ketogenic diet, which is just as effective as any med on the market for controlling seizures -- without the nasty side effects.

While you wait for your next appointment, I encourage you to do some research on the Ketogenic diet (I have a thread posted in the nursery section on efficacy), and then discuss with your neurologist.

In the meantime, you might want to try cutting out sugar and wheat (gluten) from your diet, to see if that helps control your seizures. A number of folks have gotten seizure relief from just these 2 very simple measures (which have the added benefit of keeping a trim waistline and not interfering with cognitive function).
 
Oops...sorry...I just checked your profile and discovered you're now 25. That might put you a tad too old for the classic Ketogenic diet, but you are still a condidate for the Modified Atkins Diet.
 
Hi there, thank you both for responding :-)

Its interesting that you say about drinking plenty and being dehydrated; I drink alot of water anyway but this week, presumeably due to the medication I had my first period in five years, as i guess the medication has rendered my contraception ineffective, which i was told might happen. Anyway, this week has been almost one constant aura and ive been incredibly tired. I think I recognised and stopped a seizure in its tracks in the supermarket on sunday, and interestingly I had a really strong feeling that though I was a long way off dehydrated, that I needed to consume lots and lots of water, which I did and felt over the worst quickly, but fairly c--p and tired for the rest of the day.

Ive also heard about different suppliments to take which can help, but cant seem to find a definitive list of the ones to take, do take any or know which are relevant...Ive heard about potassium?

Im very interested in controlling it by way of diet and other methods, im a staunch veggie, I imagine this would make it tricky for me to do Atkins?
 
Hiya, welcome I know exactly where your coming from and stooping drinking is crap I used too be a party lover but now occasionally I'll allow myself one cider after a crap day, but not often im going through diagnosis too originally was on 400mg of carbamazipine this got changed after his admission too 800mg tegretol now on 1000mg there's days where it makes my head fuzzy the drowsiness is a bum and I can't stop eating but I haven't put weight on, noticed past few weeks though uts getting better since. Body is getting used too it so stick with it sure you'll get sorted :-)
 
Here's one list:
http://www.epilepsy.com/epilepsy/newsletter/august10_supplements

Our son could be considered a "case study" I suppose. We have tried giving different supplements and then charted to see if it offered any benefit. The supplements that seem to work best for seizure control in his case are:

1) Nutrivene D (this is a multivitamin with additional supplements which is actually formulated for kids with Down Syndrome. It has high but safe levels of the anti-oxidant vitamins, and also has other supplements good for seizures, such as selenim and carnitene). He has taken this since he was a baby, even before having seizures, but if we stop giving it to him, we start seeing a lot of tonic-clonics.

2) Fish oil -- this is supposed to have some neuroprotective elements, may heal damage to brain cells caused by seizures, and in one small study did have some good anti-convulsant effects. It cut Jon's seizures by about 1/2.

3) Magnesium -- we give this at bedtime, and before taking it, Jonathan was an extremely restless sleeper, and also was having a lot of nocturnal seizures. This helped his sleep tremendously and reduced the nocturnal seizures (they have been virtually eliminated)
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Having your period again may have had an effect on your seizure activity due to hormone changes.
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Being a vegetarian may make it a challenge to be on the Modified Atkins, as your primary protein choices would be things like beans and soy. The beans are high in carbs, but soy not so much. But you might get some seizure relief from just knocking out sugar and wheat and adding in some supplements (you could give a 2 week trial to each and see what happens).
 
Are you vegan or vegetarian? Can you eat eggs or dairy? Jonathan was meat free for awhile on the Ketogenic diet, but was getting dairy and egg.

Nuts are a good protein choice for the Modified Atkins -- especially those with high fat content like pecans and macademias. Also, flaxseed meal has a good amount of protein.
 
OK, I just checked with nutritionist, and she said that for vegetarians she uses the MCT diet. This is also the form of the diet more often used in Britain.

With this diet, the primary source of fat is MCT (medium chain triglyceride) oil, which is derived from coconut oil. This fat is absorbed differently than other fats, and provides a higher level of ketosis. This allows the patient to be able to consume much more carbs than either the Classic Ketogenic or MAD diet allows -- which would allow you to eat enough beans or tofu or coconut milk or nuts or other vegetable protein sources.

I believe the efficacy of this diet is similar to both the Classic Ketogenic and the MAD, but not as many studies have been done as with the others.

Anyway, if you're interested, you can get more info over at the Matthew's Friends sites, and the folks there can point you in the direction of the nearest hospital that administers this program.
 
I am on topiramate. I was at 50mg twice a day but was having a lot of the side effects you are describing. My neuro took me back down to 25 mg twice a day. I am a teacher and could barely function. Talk with your doctors and let them know what is going on.
 
KarenB thank you very much you have given me alot to think about and look into, which is appreciated :-)

Have you heard of Vitamin E being taken also? I have read that this is sometimes taken by epilepsy 'sufferers' and wonder how many suppliments counts as too many..?!

sjconner, hi, thank you for your input, I have been on this dose for only about two months I think and was utterly disheatened that I had a seizure on this dose- the same as you said, 50mg twice a day- but to be honest im struggling to tell what are auras, what are seizurey-happenings and what are plain old side effects because im feeling out of it almost constantly, in one way or another...as im writing this im getting strong pins and needles in my foot, which im well aware won't be got rid of anytime soon

Will they lower it though if ive had a grand mal and absent type seizures on this dose?

Thank you all for your replies :-)
 
Topiramate (topamax) doesn't work for everyone. I am not anywhere close to the therapeutic dosage for seizures. For me the dosage I am at is working for my migraines, I can manage the side effects, and still teach my classes. I don't think the dosage is working for my partials. I am not sure what they will do if you're having seizures at that dosage but the docs have a large arsenal of drugs to choose from and lots of combinations to try.

I see my neuro again at the end of March and we shall see what he wants me to do. I have 3 or more partial seizures a year (not very many). I am in the "trying to get things figured out" stages ... clean MRI's and 2 normal EEG's. The neurologist can't say based on testing that I have TLE but he can't say for sure that I don't have TLE. In the meantime, I am not driving. I have been on and am probably going to continue to be on the meds rollercoaster.
 
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