new here....with a ?

[SteveB]

:mrt:
Hello ppl.

Nice to meet others suffering from E....and I think I am suffering from a cold.

Had my first grand mal in 12/06, and have had two since. Tried and few drs and Lamictal.

I eventually found Dr. Sachdeo in NJ (anyone else seeing him?) and started with Trileptal and when that didn't work, have added Lyrica. I have recently stated having petit mals but no grand mal seizures.

don't know what to think about how things are going.

Life was difficult enuff, and E is an extra burden that i was not ready for. I pretend like it doesn't bother me but it does. i don't really have an understanding of what limitations it has put on me (which can be dangerous).

Now have a cold, and learned i am not supposed to take antihistamines....so what can I do? Dr. is hard to get a hold of. He has 3 offices, but each are at separate hospital systems, so they do not talk. I know he does a lot of research. he doesn't email and I was given his cell and called it....and that didn't go well.

Hoping someone here can help. Thanks. STEVEB

 

[travel bug]

Hi Steve,

Welcome to CWE

I can sympathize with your difficulty contacting your doctors. Unfortunately, they often don't communicate well even when they are in the same network.

I wish I knew what to tell you you could do for your cold, but maybe you could call a pharmacist? I've had good luck getting answers from pharmacists, even ones that weren't my own. Of course some are better than others, but since all my problems with E (I had my first seizure about a month after you) I've been pleasantly surprised by how helpful and knowledgeable they can be.

Feel better soon

 

[RobinN]

Hi Steve... my daughter began having seizures in 6/09. She tried 4 different meds separately, and they each increased seizure activity. After about 2.5 yrs on meds, we decided to try some alternative therapies. Made different nutritional choices, supplement for brain and body health, and she did about a year of neurofeedback.

She is now almost 10 months seizure free, and she remains med free.

I challenged the conventional treatment, and figured that my daughter was healthy for 14 yrs. I worked to get her body back to that state again, and raised her seizure threshold by doing that.

Perhaps there are things that you can do, to raise your seizure threshold.
Vitamin D has kept the cold virus away from me for about 3+ yrs.

Welcome - I hope you find the support you need here.

 

[Blue Cat]

I've had bad sinus's for years, and my dr said there was no problem with things like tylenol cold or sudefed or things like that because they have a different mechanism and the e meds won't interact. I sure hope he's right, though have never had a problem in 9 years with that. Good luck and have lots of chicken soup

 

[Nakamova]

Hi SteveB welcome!

Antihistamines are intended for allergies rather than colds, so they wouldn't be the best line of attack anyway. There are things out there that should be safe to take: If you have a fever, aspirin, ibufprofen or Tylenol in moderation should help. Zinc tablets taken in the first 24 hours of a cold shorten how long it lasts. And chicken soup really does have things in it that help with stuffy noses and sore throats.

I recommend you stay away from decongestants unless you are truly miserable. Many contain pseudoephedrine, a stimulant. This can be a seizure trigger for some folks so you should proceed with caution if you do decide to take them.

In general, most colds last no longer than two weeks, no matter how you treat them, so hang in there! If your cold does last longer, or you develop pneumonia-like symptoms then you should definitely contact your doctor.

As for the Trileptal and Lyrica -- Was the Trileptal helping at all? If it wasn't, then just adding the Lyrica may not be the perfect solution. Ideally, it would be great if you could be on just one med -- there others out there, and you may want to ask your doc about trying them eventually. There are also other approaches that might help with the absence seizures (petit mal), including dietary ones. Tis is a good place to get started: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
and I hope you feel free to post any questions as you explore the forum.

Feel better!

Best,
Nakamova

 

[RobinN]

I've had bad sinus's for years, and my dr said there was no problem with things like tylenol cold or sudefed or things like that because they have a different mechanism and the e meds won't interact. I sure hope he's right, though have never had a problem in 9 years with that. Good luck and have lots of chicken soup

A trial of no dairy for 3-6 months might be useful to see if this is contributing to your sinus issues. Many doctors have confirmed this.