having problems with doctors

[greatfulgirl]

I recently moved to new york with my husband and daughter. I have been having seizures for about four years now. When I moved I had to see a new doctor and I also have PTSD, but I had seen him for about 3 months then he started messing with my dosage of lamictal I was at 400mg and seizure free. Then he lowered the dosage and put me on to topamax also for migraines. That is when all of the problems started. I started having seizures again and then he did an EEG at his office and it was normal so he then referred me to my physiatrist for PNES with an abnormal MRI. I don't understand would someone help me to understand? I am not currently on any medication and having seizures and ending up in the hospital.

 

[Rae1889]

Well, I heard topamax is a Johnson and Johnso brand name AED, and that there was a 76 percent decease in sales due to the generic being released and it cheaper. Plus insurances don't like to cover brand name.

They are already slowing production of topamax because of this. They might even sell the rights to it to some other company. Or get rid of their pharmaceuticals all together. Just to get out of the recession.

 

[KelVarQ]

Hi Greatful girl, I'm also in NY and I saw a number of doctors (neuros) prior to going down to Manhattan (Columbia Presbyterian) and highly recommend it, if your close enough. They have a whole wing dedicated to Epilepsy. After a number of MRI's and EEG's and them finding nothing, it was when I finally went to Columbia did they find EVERYTHING! The doctor even said after telling him it's a waste of time, "If it's there we'll find it because we have the best equipment." Sure enough he was right. I can honestly say I never saw a place where the team of doctors totally work together. I now go there for EVERYTHING!!!

Just a thought.

 

[Nakamova]

Hi Greatful Girl, welcome to CWE!

If the Lamictal kept you seizure-free, then it's a good bet that you DO have epileptic seizures, not psychogenic ones. The fact that nothing showed up on an EEG is not enough to rule out epilepsy. Sometimes it can take a 24- or 48-hr EEG to turn anything up. And many people with epilepsy never get a positive EEG. Often the focal point of the seizure is too deep in the brain to be recorded on an EEG.

I strongly recommend that you find another neurologist. If your other doc took you off Lamictal too quickly, that all by itself could have provoked seizures.

Best,
Nakamova

 

[greatfulgirl]

Thank you now I do not think I am crazy I just want to find what is causing my seizures and treat them as they should be treated, unfortunately I live in Watertown and not very close to a larger city with the specialists that I need. I am starting to get discouraged due to the chest pain and shortness of breath also lately not like a panic attack though my husband is starting to get really worried. Does anyone have the same symptoms, or could this be a reaction to my topamax? It’s not a large dose at all it is at 50mg for migraines.

 

[Nakamova]

One severe side effect of Topomax is hyperventilating. I don't know if that's what you're experiencing, but either way you should contact your doctor to let him know what's going on. Even if the symptoms are unrelated to the Topomax, you should get checked out -- chest pain and shortness of breath are not good signs. If they escalate, definitely go to an ER.

 

[Bernard]

Hi greatfulgirl, welcome to the forum. :hello:

Did the onset of seizures occur with the PTSD? FYI:

http://www.coping-with-epilepsy.com/forums/tags/ptsd.html

 

[Cint]

Well, I heard topamax is a Johnson and Johnso brand name AED, and that there was a 76 percent decease in sales due to the generic being released and it cheaper. Plus insurances don't like to cover brand name.

Some of us can't take anything but brand name medication(s). If the dr. states that it is necessary, then the insurance has to cover it.

 

[Cinnabar]

I wonder why doc took you off Lamictal? It's a very potent med but does the trick. Why didn't he just take you off the Topomax and find an alternative? You really should be on a medication(s) for seizures. I also have PTSD but there is no med for this. Must be worked out with shrink. You have my understanding and compassion. It's not easy....

 

[greatfulgirl]

Hi greatfulgirl, welcome to the forum. :hello:

Did the onset of seizures occur with the PTSD?

No the epilepsy did not start with PTSD I was diagnosed last year with PTSD, but with epilepsy 3 years ago in California. I have had several sever head injuries due to accidents and abuse. before I started having the seizures I would have sever migraines to where I would be in bead for days vomiting with the lights off and had to go to the hospital often then I found relief when they put me on topamax. it seemed as if everything went away. then after the last head injury I started having all of my other symptoms and went back to the neuro to see what was going on they said it was stress and that it would go away and now I find myself sometimes doing things I do not remember saying or doing. then other times I wake up on the floor not knowing how I got there. They originally said it was due to my blood pressure fluxuating from a sitting to a standing position but I would be in the place of the house where there was no chairs near me.

 

[RobinN]

Welcome GFG -
Your migraines sound like what I use to experience. I was in a fetal position for 3-4 days. Mine were not related to head trauma though. They were like clockwork on my cycle. Lucky for me a doctor recommended I try magnesium. I have been migraine free for about 5 yrs. It was even suggested for my daughters seizures.

What do doctors know. You have a good ideas as to what is happening and need to find someone that is willing to work with your unique situation. I am also going to share that we have done Neurofeedback. You can read Rebecca's story through the link in my signature. It is also being used for PTSD with great results. Something you might want to check out.
There is another member here that also had great results and he lives in N.Y. if I am not mistaken.

I hope you can get some answers soon, as I do understand the hospital route very well. Rather a waste of time for many seizures.

 

[Cint]

No the epilepsy did not start with PTSD I was diagnosed last year with PTSD, but with epilepsy 3 years ago in California. I have had several sever head injuries due to accidents and abuse. before I started having the seizures I would have sever migraines to where I would be in bead for days vomiting with the lights off and had to go to the hospital often then I found relief when they put me on topamax. it seemed as if everything went away. then after the last head injury I started having all of my other symptoms and went back to the neuro to see what was going on they said it was stress and that it would go away and now I find myself sometimes doing things I do not remember saying or doing. then other times I wake up on the floor not knowing how I got there. They originally said it was due to my blood pressure fluxuating from a sitting to a standing position but I would be in the place of the house where there was no chairs near me.

If you've suffered head injuries, how can the doctors say it will go away in time or it is just BP or migraines (migraines and epilepsy are in the same family, btw)? As Nakamova and KelVarQ have said earlier postings, you really need to see an epileptologist and get some in depth testing, especially since you've suffered head injuries. I honestly hope you find something that works before you suffer serious injury due to a seizure.

 

[greatfulgirl]

well thank you for all of your advice it helps i have a new referral to see a private nuro here in Watertown. My primary care physician said that he is one of the best in the area so i hope that i can get some help. My psychiatrist has started me back on my laimictal because he does not seem to think that these are PNES. I have stopped letting them decide what their going to do and said to myself to stop getting pushed around. So far it is working but husband likes to exadurate about the seizures and kinda hinders progress. like when I have multipal seizures he will say way more than what is normal. He will say 15 when it was 2 how can deal with this?