PNES and AED'S

[thornton8000]

Hello again,
I've been doing alot of reading and finding alot of info on-line about how PNES and AED's how they dont do anything in stopping PNES seizures or they can make them worse, and my neuro stated he's keeping my diagnosis of PNES even tho the topamax and keppra has stopped my seizures altogether, and have asked him if he wanted me to send him all this info to him or bring it to him as physical proof. I've found so much info that stated AED's will not stop PNES seizures so since my son had his kidengarten grad today I have to call and make a new neuro appointment tomorrow for a 2nd opinion.

thoughts?
Mike!
thanks

 

[Nakamova]

I hope you get through to your neurologist and get him to change his diagnosis, but don't get your hopes up too high. They can be a stubborn, close-minded bunch.

 

[thornton8000]

thats why I'm calling my mother in laws hopefully tomorrow and getting in with them soon and bringing in all the PNES and AED info with me to my PCP apt on the 11th and going to see my talk doc soon and when i see my head shrink talk to her soon about this "diagnosis" as well since I have other doctors that have stated they believe I have epilepsy but undiagnosised but since my wifes friend who did an internship in a neuro clinic said I have inbrain seizures and thats why EEG and AEEG'S will not show any seizures and thats why the keppra has worked so well for me but the neuro will not listen to me or any of this information so I'm going to talk to other people and I've also contacted the clevland clinic of epilepsy to get their opinion to send to my neuro as well since I read the misdiagnosis of PNES can take 7-10 years to reverse and I'm not taking that long to get a correct diagnosis LOL.
Thanks NAKAMOVA! You and eveyone here have been AWESOME!
MIKE

 

[Nakamova]

Keep us posted!

 

[thornton8000]

most def will!

 

[momof3boys]

I can tell you that last year after having my first VEEG in March 2011, I was having seizures that were not registering on the EEG. My neuro referred me to a psych dr, who I saw. She informed me that just because I was having seizures that were not showing up on the EEG, didnt mean they were non-epileptic seizures. She asked if I ever had seizures proir, and I said yes. They were complex partial and grand mal seizures. One thing my doctor did different this time was that when I was admited to the hospital for the VEEG, he stopped my medications cold turkey. Which he said was fine. But she said he needed to take that into account due to me never having this done before and how my body would react. I ended up having alot of simple partial seizures. I was put back on Keppra XR and within days the seizures stopped. She said that if they were non epileptic seizures, the seizure medication would not stop them. They would continue to come no matter how many medications my dr put me on. Since then, she sent her notes over to the doctor and they left me on the Keppra XR. I see him next in august. But I just wanted to let you know my experience with how things went.

 

[thornton8000]

thank you mom of 3boys my doc didnt believe me that about PNES and AED meds even after reading him the medical proof so I'm bringing it to my PCP and going to make many other doc apts and with talk docs and shrinks and new neuros asap to try and get the proper diagnosis since my neuro wont do anything to try make sure its not PNES since I've tried talking to him and had had many other med prof telling me and other medical documents in my file stating I have had seizure or seizure type issues and took shrink testing that stated frontal lobe E but needed more testing to properly diagnose, and he didnt want to even use that as a form of diagnosis.
so thanks again everone I love CWE it's been a great help and you all have been a 2nd family and my wife thanks you all as well for helping me as well!
hugs and blessings to all!

Mike

 

[PNESScared]

I've been listed as PNES since 2011 after an EEG video monitored for 7 days. Quite a bit of hard work when you're tied up and can't do anything. I take 200 mg of Lamictal in the AM and 200 mg of Lamictal in the PM. I also take depression meds, anxiety meds, etc. Non of which seem to help. I've been finding some help with groups on Facebook. They don't give me ideas of things, but I have found that there's not much I can do other than sit back and deal. Stressing myself (which I do often) doesn't help.

 

[thornton8000]

PNESScared what are you doing in terms of trying to relax? reduce your soda? caff free reduce your phosphate in your sodas as well check your sodas take that out no more energy drinks I've read so much about PNES give me a shout if you want my docs dont want to list but if you want I'll give you a set of eyes so to speak.

Mike

 

[PNESScared]

I have gone all yen. I know for the benefit of my health I should give up all caffine, but I am a complete @$$ without it. (Yes, a woman who will admit downfalls) One 12 oz soda is the max. I went without for 3 days this time and spent 3 days in bed trying to pull myself out of the 'funk' that I have from my other illnesses. I attempt to do yoga, I do counceling, (for only 22 years now) I journal, I channel my energy in art and the art of BS. Laughter is all I have right now, trying not to cry.I've cut back on processed foods and am cooking more at home, I cut out processed crap out of my life at home and slowly at home with the steps. (they deal naught with change) I'm sure I miss tons, any ideas?

 

[thornton8000]

have they tried any other AED's other than the Lamictal? the only tried me on topamax then only by pulling teeth and since my migraines never went away with my night seizures did my neuro suggest keppra and 4 hours after that my ""PNES"" was gone and have only had 2 startle seizures since and that was 7 days ago now and have delt with this since 6th grade and am 32 in 3 days if you click on my name you can read my other posts to read my journey on CWE and see how others here have helped me on the way NAKAMOVA and MOMof3boys and others have been awesome to name a few. but if I can help let me know, I drink in total mind you form 5 am to 1 am 3-4 with caff sodas and the rest propel and powerades and my worst vice is smoking cigs no street drugs for me I have kids to think about

 

[PNESScared]

I've read so much about how anti-seizure meds aren't good for non-seizures and can make them actually more prevalent. So, I'm still on the fence on that. Thanks for the help.

 

[thornton8000]

its true, but I pushed for a second AED was on topamax and my neuro suggested keppra and heard about it and was told it was the best for inbrain seizures which I've been told I have, so I wanted to try it and it stopped my seizures right away, and if it would have made them worse I would have stopped it, and after all my reserearch if iy would have not helped or if it would have made them worse I would have stopped my 2nd med right away.
I'm stubborn, and dont take no for an answer anymore and am getting a 2nd opinion on the 21st of june and went through all my medical paperwork to bring to my 2nd opinion and went through it with a highlighter to make it easier for the new neuro to see the important parts when he's looking it over
hope this helps
Mike

 

[Nakamova]

PNESScared,

Any chance you can try neurofeedback? It can potentially help with a number of things (including anxiety and depression), and doesn't have the side effects of meds. The drawbacks are that it can be hard to find a practitioner, it's usually not covered by insurance, and you need to commit to 20 to 40 sessions. But if meds aren't helping, and you're reluctant to try other meds (which I completely understand), then NFB could be the answer. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

 

[PNESScared]

I'm certain Nakamova that NFBf wouldn't be found in this area I live in. I have to drive 3 hours to go to an allergist. And if it's not covered by insurance, I'm not sure how that will work. I may have to wait to see if I can get disability! Thank you so much for the extra information.