Temporal Lobe Seizures

[wondering]

Thank you for your time.

I have had complete urinary retention for four years.  Sometimes termed neurogenic bladder, sometimes termed atonic. I self cath.
I am late thirties and female.  Three births. Hysyerectomy  this year because of severe pain after a conization left the cervix too narrow for normal menstruation. I am left with one ovary.

I also have what are termed by different Dr.'s as temporal lobe seizures, migraine-epilepsy syndrome and basilar migraine. Was also told I have thoracic outlet syndrome. They started in approx. '93 and have evolved from absence type-seizures to involing involuntary movements mostltly of the left side.  Facial distorion and arm movement                                                  painful muscle tightening and movement of my head.  It moves mostly to the left also.  I have had EEG with temporal lobe spikes although the Neuro says these were small or perhaps only one?. (the tests were at least three years ago) Phenobarbitol has cut the severity of the attacks in half but not the frequency.  I have at least two a week. I get an aura.  sometimes up to an hour before hand I feel sick to my stomach  or a few minutes beforehand I will feel drugged, sleepy or just plain absent.It is a distorted feeling.

Also this year I was diagnosed with Fibromyalgia. My shoulders and back (all the way down) are in an almost constant state of spasm.  I am currentently treating this with meds and massage but always comes back.

Two major questions I have are these.
1) In all the time that I have had  atonic bladder, I NEVER lost any urine accidently.  This month it happened while I was sleeping.  I had a seizure before bed and then woke up in the night and had incontinence (a lot) while sleeping.  This frightened me.Once again I lost a small amount during seizure.

I saw a new Neuro who says his concern is stopping this seizures only and possibly upping my phenobarb dosage as well as starting me on a antihypertensive.  No test except phenobarb levels were done.  Nothing back yet.  Doesn't it seem odd that the nature of the seizure/bladder condition would change so dramatically overnight? I had a brain MRI two years ago and was normal.
He said incontinence is normal with seizure and would not be concerned.

2)Also ,on two separate occasions this month my left hand has turned blueish purple.  Especially the fingertips.  It feels as though it is being pumped up with something.  A very tightening feeling along the inside of my left arm and hand along pinky and ring finger especially if I attempt to extend the arm from the side of my body. feels as though the tendons have shortened  or are being far too strethed with only gentle exention. it subsided with a half an hour.  I took photos to show the difference in my hands. I have yet to show the doctor.  The Dr. who was on call stated that as long as I had a pulse, I was fine.  I do not call Dr.s when I have "hangnail" type problems.  I am  curious what your take may be given the information provided.  I have posted before and I thank you for your kindness in offerring this service.

I will tell you now I have had urodynamic studies and have been MRI'd for appearance of tethered cord and there is also no cervical rib.  What do you think?

Thank you again for your kind time and consideration.

[CCF Neuro[P] MD, RPS]

Dear CooditB:

Thanks for your comments, hang in there as life is not over until the fat lady sings (Yogi Berra).

CCF Neuro MD

[CooditB]

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.

[Leanette]

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.

[CCF Neuro[P] MD, RPS]

thanks for the comment.

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

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

[wondering]

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.

[CCF Neuro[P] MD, RPS]

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

[wondering]

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.

[CCF Neuro[P] MD, RPS]

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

[wondering]

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.

[wondering]

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.

[CCF Neuro[P] MD, RPS]

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