New here, possible seizures, med question...

[my2boys99]

Hello everyone. I am a 44 year old mom of two wonderful boys (ages 17 and 19) and wife of a very supportive husband of almost 23 years.

About 12 years ago, I was having a lot of what I called "dizzy spells". I would never lost consciousness, but suddenly the room would start spinning and I literally couldn't see anything, so I would just shut my eyes and put my head down until it would stop (maybe 20 seconds long). I would usually get an aura before it would happen and then my head would feel very strange the rest of the day after it would happen. It would happen periodically and I finally mentioned it to my neurologist (for migraines).

She said they sounded like seizures and ordered an MRI and EEG. The MRI was fine but he EEG I failed in the temporal lobes. She said they were simple partial seizures and I was put on Topamax to treat both the seizures and the migraines. Topamax worked great for both (the seizures disappeared and the headaches were helped tremendously) for about 2 years until my body decided it couldn't sweat anymore. So, I switched to Zonegran. Seizures still gone, but didn't treat migraines as well. Stayed on it for about 4 more years until I convinced my neuro to let me go off since I never had another seizure. I also passed two EEGs.

So for the past 6 years, I have not been on anything for my seizures and haven't had any. Migraines have been killer, but that's another story...So, about a month ago (during my period), I start having that aura that I used to get before the actual seizure. It was happening every day, most of the day during my period. I went to see a new neuro and she said that the aura is actually a seizure, which kind of scared me. She also said that she isn't convinced that I'm actually having seizures. She said that migraines can cause visual disturbances just like I described and aura type feelings without even causing pain afterwards. And because I failed my EEG doesn't necessarily mean anything. She said to wait a week when I was off my period, get off all caffeine and let her know what happened. It was better, but I did have that feeling a little bit, so she decided to schedule an EEG and put me on Zonegran. I am having the EEG next week.

So, now my question about Zonegran. She started me at 100mg for 7 days then 200mg. Well, it's going ok. The only problems I'm having is an upset stomach (which is not really that bad, and I can handle), and feeling a little more sleepy, but the one I'm really more worried about is I'm feeling itchy.

I've researched it to death online and am finding conflicting results on whether this is normal or not with zonegran (well, Zonisamide in my case). I really didn't feel very itchy on 100mg, but on 200, it really hit. My thighs were so itchy the other night. I scratched them so hard that I had bruises in the morning! I kind of freaked out about it! So, I'm being much more careful with my scratching and I'm not bruising anymore. I would like to scratch more than I am, but I'm ignoring it. I don't have any rash, just an itchy feeling. It's not there 24/7, but it is there a lot.

Does anyone else have this with Zonegran? Does it go away with time? Is it possibly because I went up to 200mg so quickly? Could it be something more serious?

And now I'm more confused than ever because I don't even know if I'm having seizures or not. I have not had the "aura" since being on the Zonegran, but she said that that could be because it also treats migraines so it's hard to tell. I don't know what to think.

Sorry this got so long. I just have so many questions.

Thanks for listening and providing any help!
Jane

 

[Cint]

Hi Jane,

Glad you finally found something for your seizures & migraines. I've never taken Zonegran for either but I found this info in the www.epilepsy.com website :

What are the most serious side effects of Zonisamide?

Rashes
The rash may take various forms, from small red spots or blotches on the surface of the skin to large blisters. It may be preceded or accompanied by itchiness. When you first start taking Zonegran (specifically during the first 2 to 4 weeks), watch closely for any signs of a rash. Alert your doctor if you detect changes in your skin. If a rash progresses, you may develop a fever or a feeling of sickness. Occasionally, fever comes before the rash.

I did have this problem years ago when starting phenobarbital. Call your dr.

 

[Frink]

Hi Jane,
Welcome to CWE.

I am with Cint, please call your Dr and let her know about your symptoms.

 

[acshuman]

Are Auras Really Seizures?

Jane,
Welcome to CWE!
Migraines and Epilepsy are very related. Many times a person may have both migraines and E at the same time. When a seizure occurs there are breaks in the connections in the brain. Migraines are the same thing only the connections don't completely break, they have a very difficult time staying connected and this causes the pain. Some people have migraines that are so bad they wish they had E.
An aura is many times a small seizure. It just isn't strong enough to cause the disruption that a full-blown seizure does.
I have been lucky during my 59 years with E. I haven't had any kind of negative feelings after I have a seizure. I seem to come out of a seizure and am totally clear-headed.
You have been able to stop taking meds for your E several years. It may just be that your E has changed enough that it no longer will allow itself to stay away.
I sure hope that you can get answers to the many questions that I know you have for your neurologist! Getting answers can be very calming even if they are not giving you the best results. The answers can settle any anxiety that a person can have.
If you feel you need to ask any questions of the members of CWE, feel free to ask! We have many years of experience with many different types of E. :twocents:

ACsHuman

 

[Cint]

An aura is many times a small seizure. It just isn't strong enough to cause the disruption that a full-blown seizure does.
I have been lucky during my 59 years with E. I haven't had any kind of negative feelings after I have a seizure. I seem to come out of a seizure and am totally clear-headed.

An aura IS a simple partial seizure that does not always go into a complex partial or a Tonic/Clonic (grand mal).

http://www.epilepsy.com/learn/epilepsy-101/what-happens-during-seizure
Aura:
An aura or warning is the first symptom of a seizure and is considered part of the seizure. Often the aura is an indescribable feeling. Other times it’s easy to recognize and may be a change in feeling, sensation, thought, or behavior that is similar each time a seizure occurs.
The aura can also occur alone and may be called a simple partial seizure or partial seizure without change in awareness.
An aura can occur before a change in awareness or consciousness.
Yet, many people have no aura or warning; the seizure starts with a loss of consciousness or awareness.

Acshuman, you're very fortunate to not have any kind of negative feelings after a seizure!! I've had many migraines after a full-blown TC and sometimes after just a CP.

 

[my2boys99]

Thanks!

Thank you for all your responses. I have just left a message with my doctor's office.

I don't know what itching means without a rash, but I guess I shouldn't mess around with it!

Thanks again and I'll let you know what she says,
Jane

 

[my2boys99]

Just heard back from my neurologist. She isn't sure that the itchy skin is connected to the Zonegran. I guess I'm not completely convinced either. It just seemed awfully suspicious that it happened at the same time. She suggested using lotion, waiting a week, and if it's still bothering me, to lower it down to 100 mg and see what happens.

Guess we have to wait and see.

Thanks again,
Jane

 

[masterjen]

Hi, my2boys99;

Since your neurologist doesn't think it is the zonegran, it may also help to use unscented laundry, bath soaps and lotions for a while, even though you may have been using your usual scented ones for a long time. Has anything changed in this regard, such as new detergents, soaps, lotions, new clothes, etc. Is anything in the air considered an allergen for some people? (eg. some people get itching from cottonwood blowing around). Keep areas of your body that are prone to getting warm (eg. inner thighs, armpits and chest, etc.) cool and dry. It is possible that something else - even something you have never reacted to before - is triggering a sensitivity reaction rather than an allergic response. Good luck! If you still have trouble and really feel it is the zonegran, there are other anti-seizure medications that also are used for migraine prevention (eg. valproic acid).

 

[acshuman]

Sorry!

I am sorry I listed my time w/E as 59 years. It really is 50. :embarrassed:

 

[Porkette]

Hi Jane,
It sounds like the med could be causing the rash. I had the same problem with lamictal. You may want to speak to your pharmacist about this I have found they know much more about meds than a lot of my Drs. do.
I have a feeling that these seizures are possible hormone related. I would always have seirure 7-10 days before my period and then again after. My Dr. put me on Diamox and that stopped most of those seizures. What's happening is the estrogen level is going up in the body causing more excitement which in turn can trigger a seizure while at the same time the progesterone level is dropping and it's the progesterone that helps calm the nerves. If you are interested and aren't allergic to nuts start eating some almonds or lightly salted nuts they have progesterone in them. You can also buy natural progesterone cream at nature food stores the cream is made up of wild yams and peanut oil just put it on your skin 1-2 times day and see if that helps. Another thing that I do is use coconut oil on my skin twice a day the coconut oil builds up ketones in my system and the ketones help reduce the seizures. I wish you the best of luck and May God Bless You!

Sue

 

[seagull]

I feel for you with migraine I dread that more than sz

 

[my2boys99]

Thanks so much for all your advice, you guys are awesome!

I haven't changed my soap or laundry detergent or anything. I dont normally have sensitive skin Ir allergies, but who knows. I know they can develop at any time.

I have been blaming everything on hormones lately, so why not sensitive skin and seizures! Perimenopause has not been a walk in the park. But then again, I've never had a hot flash. Great, now I've jinxed myself, lol.

Great advice from all. I might check with my pharmacist. The thing is, I don't have any rash of any kind. Just feel itchy. And not all the time... But a lot of the time.

And yes, some of the migraines are worse than the seizures.

This is a great site and I'm glad I found it.

 

[Porkette]

Hi Jane,

Before I started having seizures when I was a kid I started having migraines. One thing I learned about is cold water therapy and that helped both the migraines and the seizures.
Take your temperature 3 times a day at the same time and any time you have had or feel a seizure starting and be sure to write down the date and what time of day you do this along with your temperature. Then start putting a cold washcloth on your face and the back of your neck 3 times a day or anytime you feel a seizure starting up, by doing this the neurons will calm down in your brain and it will reduce your migraines and in many cases it has stopped seizures for many people. I was in a medical study and they found that when they did this each time before I had a seizure my temperature was a little higher and that in turn fired up the neurons triggering the seizures. Here's wishing you well and May God Bless You!

Sue

 

[Belinda5000]

Hello Jane,
auras I don't have with my seizures I just get a feeling;My auras stopped when I stopped I started taking klonopin.

 

[my2boys99]

That's interesting that you say that. I have a script for valium (for interstitial cystitis) and when I took it when I was having the auras, they went away. I told my neuro that and she said that yes, valium can do that. I suppose klonopin can also, since it's also a benzo.

 

[seagull]

Porky right about cold compress with migraine it do sod all for sz.Migraine for me a cure be holy grail sadly it not going be found in my lifetime...Only thing that helps but not take away is cold cloth on eyes maybe colbazam pray to sleep.Another thing that can abort it and this for me,If timed to mins even second I stuff myself with cheap penny sweets wash down with tonic water but I add I have to do it before first throb five ins later would be to late but still need cold cloth dark room I reiterate that for me.
I
I also took advice from another member to use magnesium the stuff get in health shops and coconut water ,I been doing it for about 2 months now and I have felt a difference not had head ache of migraine proportion in last 6weeks.
yes I Agee awesome people here