Dear CooditB:
Thanks for your comments, hang in there as life is not over until the fat lady sings (Yogi Berra).
CCF Neuro MD
I am 38, and until about 6 years ago I was on Phenobarb/Dilantin for about 18 years. I did very well untill I then became ill with Bi-Polar. (Mostly hyper) That I know now has changed my entire medicines and health, I now am always having Psuedo-Seizures better known as Fake seizures. My Epilepsy is Left Temporal Lobe. I've had to go thru some very rough times now like starting all over in my life. I lost a marriage over it all.
Just this year I was able to get my Dr. to send me to Vanderbilt finally for a start.I am unable to drive right now, no work.I also had to go thru a complete hysterectomy for this which has all effected my life. I am now on Tegrertol for the Epilepsyalong with Depakote for moods and Neurontin for moods, also other drugs. Life has been hard, yet I've learnt that if I do not ask questions from many people, I learn nothing. I have researched alot,for I am alone also at home answers are not going to come to me. It is all hard & I know it is for I've been there & may always be, yet some things I got done have made improvements in my life recently. Tears don't fix all neither does anger.I wish you the best anyone with these things to live with.Evne now I pray that I can drive again someday so I may once again Work.
I really agree with the Dr. here. I was on Dilantin for 4 1/2 years. I could not get a thought straight. I have noticed already the difference in my thought pattern now that I am off of it. Also do you know about Limitol I don't know if I am spelling it right. It is a fairly new drug not like Phena And Dilanton.I almost was put on Limitol until they found out that I don't have seizures but a heart condition that lookes like seizures.
thanks for the comment.
CCF Neuro MD
Dear Wondering:
Phenobaritol causes cognitive slowing. Most people hate having their thinking process dimmed. All medications have side effects and we try and choose the best medication with the least side effects possible. I would rather have my blood drawn a few times then go through life alittle dull concerning the world around me. That is just my opinion.
Sincerely,
CCF Neuro MD
Is Phenobarbital more poisoning to a persons system than any other drug that may be used long term for seizures? Depakote as well as Tegretol must be monitored for blood level for toxicity reasons, so I am curious as to why Phenobarbital is considered the worst of these to use for Temporal lobe seizures.
Thank you again.
Dear Wondering:
Phenobarbitol can be very sedating, especially in an adult. People do get use to it and there are some adults on this medication that are considered normal intelligence. It is an older medication and so the management is well known. It covers a wide variety of seizure types. However, we know that it is a mitochondrial poison. It affects many other types of medications. But again, you are being managed by someone else and they are undoubtly doing what is best for you.
Sincerely,
CCF Neuro MD
What do you mean by a "normal functioning adult" ? Why would you be wary of phenobarb? I'm intelligent enough to understand that this is your opinion and only that but I am very curious as to why you would term it that way.
I did not assume that up to six seizures a week would be thought of as anything near normal. I also understand that these Dr.'s here are trying to control an abnormal situation and are doing the best they can as you stated.
Dear Wondering:
I still would not use phenobarbitol in a normal functioning adult. But there are various ways to treat illness and I would follow what your neurologist has you on. I would not get an EMG as you do not describe the symptoms of neurogenic thoracic outlet syndrome.
CCF Neuro MD
Thank you again.
I am not on Tegretol because of a severe allergy/toxicity problem I had with it last year that landed me in the hospital for a week. Tegretol and Mono were found to be the cause. I had pancytopenia. I was on Tegretol for three weeks pryor. Temp went to 104 and had a bad rash.
I have tried Depakote wich made me feel ill all the time so phenobarb was then tried. My current level is 42 for phenobarb.
My Neurologist was not overly concerned with the vasoconstriction and stated simply that he did not know what might cause this. He felt that my theory of the neck and shoulder spasming so badly could not be causing it to happen, His report,although, stated that I had "severe" spasming of the neck and shoulder region. I am seeking second opinion shortly.
Would you advise that I ask for an EMG? Why would a Neurologist NOT do one in the face of all these difficulties? Any danger? What other reason might cause the problem with the hand turning color and becoming painful besides the TOS?
Thank you for your response.
Thank you again.
I am not on Tegretol because of a severe allergy/toxicity problem I had with it last year that landed me in the hospital for a week. Tegretol and Mono were found to be the cause. I had pancytopenia. I was on Tegretol for three weeks pryor. Temp went to 104 and had a bad rash.
I have tried Depakote wich made me feel ill all the time so phenobarb was then tried. My current level is 42 for phenobarb.
My Neurologist was not overly concerned with the vasoconstriction and stated simply that he did not know what might cause this. He felt that my theory of the neck and shoulder spasming so badly could not be causing it to happen, His report,although, stated that I had "severe" spasming of the neck and shoulder region. I am seeking second opinion shortly.
Would you advise that I ask for an EMG? Why would a Neurologist NOT do one in the face of all these difficulties? Any danger? What other reason might cause the problem with the hand turning color and becoming painful besides the TOC?
Thank you for your response.
Dear Wondering:
Sorry about your epilepsy. Phenobarbitol is not the medication we usually use for temporal lobe epilepsy. You might want to investigate whether another medication such as tegratol might be more beneficial and also help with the fibromyalgia. Your physician is correct in that when seizures generalize they can and often do cause incontinence (even in patients with a neurogenic bladder). Thoracic outlet syndrome involves two types, one is vascular and really is a medical emergency and needs to be dealt with by a vascular surgeon. The other is neurogenic and is truely over-diagnosed. Unless it is EMG confirmed, it doesn't exist. Your vasoconstriction might be due to various things and I would see your neurologist about what might be causing this condition.
Sincerely,
CCF Neuro MD