Yes, I have had this problem. You can ask your doctor about it and I would for sure. This happens to me and many others because of the muscle contractions and the possibility of clenching our teeth and biting the tongue. Did you noitice if you bit your tongue at all? That's usually a sign for me as I'll wake up and notice that the back of my tongue doesn't feel right and hurts. The muscles in your face and neck all connect along with many nerves which get those nerves moving. It's all related. If you notice that you clench your teeth during the night from tension or stress you can also consult your dentist and have a bite block made to wear while you sleep. I have one. I have a speech pathology background and it makes me more aware of head, neck, nerves and muscles and how they work but consulting your physician first is always a good idea. It's always a good idea to journal your seizures and let your physician know when you have a seizure. Good luck and God Bless!

No, I haven't experienced anything like that before.

Teach - I did not notice anything from biting my tongue, pain or swelling, since then, but I had the seizure at about 2:00 AM, I was told, I woke up at 10:00 AM and that is when I was awoken by my shoulder dislocated again. It is so annoying.

I did call my neurologist's office yesterday. I am just waiting for a call back. I am asking him to put on me Topomax on top of my Tegretol. Topomax for the daily headaches, but it can also help control seizures. At the time of this seizures, I did not have any Ativan on hand to take afterwood...but this shoulder dislocatocation has become too painful to handle. I just do not know what to do...

Hi~ I'm sorry for your pain. I have never esperienced a shoulder dislocation but I know how painful that is. I don't under estimate anything caused by a seizure. I take Topamax as well for headaches and I hope your doctor has made you aware that there is a side effect of weight loss due to muscle wasting so it's important to excerise as much as you can and supplement with vitamins. I also take Dilantin and Keppra. I've never been put on Tegretol. I thought Ativan could only be given under supervised care in a facility or home health care, that's a serious drug. It's only been given to me to help stop a seizure from occuring if I've had one and it appears as if I will have another one. I'm not a doctor but it sounds like you may need something like Keppra or something else to help prevent the seizure from occurring in the first place, Keppra works well with Topamax but makes me a little more emotional. I can deal with that. Have you figured out what triggers them yet? I wish you the best of luck, please let me know how you are doing.

Teach - I have Ativan on hand for anxiety for the days when I feel irritated and such when my other disease (PTC) flares-up and I cannot take the pain. That is why I have it with me.

I need to lose weight, it is actually really, highly recommended by my PCP, neurologist and NS. PTC is *sometimes* worse in those with that are heavier....I hate saying obese. I do not consider myeslf obsese, but yes.

My seizures were triggered this time the antibiotic. Taking antibiotics, even the PTC "safe" ones for me have now caused issues...so when I get as sick as I was, I am just stuck in a rut.

I take Tegretol to try to help control my seizures, and Topomax can also help with that...but I more want it for the daily headaches. I was taking Propanolol, but that was causing low pressure headaches and I could not deal with those. So if i am on two anti-seizure medications, great. I know Topomax will make me feel stupid for a few weeks, I have been on it before, but it is worth it if I wake up every day and get through my days with no headaches, I am worth working through that yucky phase. I do not work because of both my Epilepsy and because of my PTC.

Oh and it took a stronger muscle relaxer to relax my jaw. It is STARTING to relax..thank god!

Sorry, wrote a book!

Hey never worry about writing too much....I wwrite a lot too. I feel it's better to explain too much than not explain correctly! From the picture I see of you, you don't look heavy which is why I mentioned the weight loss for the Topamax. I happen to be a tiny person and lost quite a bit of weight, worked out a few times a week, never really felt hungry but ate healthy and dropped down to a size 0. I've since gained some weight but my family thought I belonged in an eating disorder clinic! I didn't have nor do I have an eating disorder. Even though I take the Topamax I still wake up with headaches and have them everyday too. It's just that they aren't as severe most of the time. I believe all the anti seizure meds have a "stupid" phase we have to go through before our body gets used to it. They're designed to slow down our brains electrical impulses so we don't short circuit! LOL I can remember as a kid my neurologist explained this illness to me like spark plugs on a car. I asked him if he could new spark plugs in my head because the ones I had didn't work so well and were annoying me! He just laughed... all these treatments are different for everyone and the triggers are too. Stay in touch with your body, it's the best thing you can do for yourself and definitely keep your doctors aware of any changes. I wish you the best of luck with everything and I'm glad we are now friends :o) The only pain med that works for me with my headaches is Fioricet, nothing else works better. Let me know how things go and God Bless!

Just wanted to throw in here that I got an appointment to see my neurologist on Wednesday. Hopefully get some stuff resolved!

Good luck with your appointment! Let us know how it goes. I'm trying to get one too. I think I need to have some tests done and might as well get them over with.
Take Care!

My neurologist increased my Tegretol dose. I was taking two in the morning, two in the afternoon, two at night...now I am to take three at night. He also started me on Topomax. Since this is also an anti-seizure medication, hopefully it will be an extra kick! He started me with 25mg at night for one week, then 25mg in the morning and then at night for the next week, then 50mg in the morning and night after that. He wanted to slowly build me up.

He also told me that the safest way for me to lose weight is to swim. I have to worry about pulling my shunt out of place with other ways, so I am going to join a YMCA or gym and swim. Also diet, obviously, but you know.

He did say that it is diagnosed as epilepsy...and that the episode I had at a concert a couple weeks ago was a seizure. So I have a lot to work on!!! I am going to another concert this Saturday, but I told him I appreciate his medical views, but I am not skipping concerts! lol They are too important to me. :)

I hope you get good news!!!

OK~ that all sounds good! I'm happy for you. I just want to ask a couple of things if you don't mind....
If your seizures are not completely under control, why would your doctor suggest swimming?? Will anyone be with you just in case you happen to have a seizure while in the water? I ask because I don't know how to swim and was never really allowed to swim for that reason. Topamax wastes muscles and I've had to do weight bearing exercises to prevent the atrophy etc. That's where the weight loss comes from with that drug. I kept the weights very low, not body building weight and it wasn't stressful to me.
As for the concerts, it's OK to go, I have done that too. Strobe lights are the issue for epileptics especially the red or other bright colors. I've worn sunglasses. I find it difficult to watch fireworks, be stuck behind emergency vehicles with all kinds of lights flashing even carnivals with all the lights flashing on the rides plus those that spin!
Please don't think I'm saying you shouldn't enjoy yourself. I'm sharing from experience the things that have effected me and how I tried to overcome the difficulties with those times so I can still enjoy them. I still don't swim and don't go near the water without someone with me. I will where sunglasses at a concert or carnival anytime and it's helped. I hope this helps and I wish you the best of everything always!!

I do not mind your questions at all... :)

Lights do not bother me often...this last time I was 7th row from the stage and it was really flashy...that is what happened.

As for swimming, I do not go anywhere without someone else with me. I went to the beach with one of my closest friends twice over the summer and did fine...and when I go these times for exercise, I will definitely be with someone. I do not feel comfortable enough to go it alone yet. I feel that I will personally wait about six to eight months after I am seizure-free to go it alone.

I'm so glad to hear My questions didn't bother you! Whew! :o) I really am happy for you and want you to experience the best possible days and nights of life you deserve. I sometimes think we all feel a little cheated because this illness does come with its own kind of limitations but it isn't as bad as some others. I always try to look at the positives just as you do. I needed to gain my confidence back in myself and once I had it back I was determined to keep it!
I wish you the best of everything!! So happy for you!!