Hello Sue
Thank you for your reply and good suggestions. Are your seizures under control now? I hope so.
Re. MRI, I have had so many MRI of the brain ib the last couple of years, that I can not even count them, at least 5 or 6. This is due to , as I said, I had the aneurysm, then I had CVA and TIA symptoms. The first MRI I had, showed some demyelinating lesions that was in a pattern suggestive of MS. So they kept on rechecking every 6 months for new lesions, but they were stable, so I think they have ruled out MS. But there is also some vascular malformation near the Medulla. I never had this explained. All I know is that I was having head aches and 3 times vertigo with ceiling and floor spinning. Then I had visual scotoma in my visual field 3 times, very scary. The neurologist and opthomologist said it was Migrane Aura.

Back in October last year I saw one neurologist, and he said he could not help me , due to the constant vibration and electrical current feeling inside trunk and down spine, I asked for EEG. The result stated:" abnormal EEG due to presence of phase reversal in the mid central region" I asked the doctor what it ment, he said an other doctor who he sent me to, coul deal with it. The next neurologist, said it was nothing.
But now, these night episodes are different. I do not know what the MRI could show. This specialty neurologist that I have seen the last few months, was saying something regarding "Cerebral Palsy". This was due to the fact that I have had some lack of musle developement in right leg ( due to cogential clubfoot, which was repaired as child) I did not understand, because my whole life I have lived a normal life, and has never been told this before. But then again, I never saw a neurologist.
I will try to get those tests done. You see, I am on that Lyrica to treat severe polyneuropathy.
Usually my headaches are like what they call "Ice Pick headaches", but sometimes they are constant. Like today, I have constant headache on all of left side of face and head. Tylenol does not touch it.
Perhaps, as you said, theese stange episodes, could be due to some sort of vascular problems in the brain, and added to the fact that there is autonomic nervous system deficiency.
Thank you for explaining how this work,
I hope I do not have a seizure disorder.
I also hope everything the best for you. It sounds like you have learned well how to live with it and it well controlled.

Synnove

Hi Synnove,

It sounds like you and I have a little in common, the both of us have our Drs. stumped as to what is going on. If I may ask did you have the fMRI done? (functional MRI) and I would request a PET and SPECT scan to be done. I have family that had MS and that can trigger sz. depending on the form of MS and so can cerebal palsy. I am also wondering if the aneurysm you had causing a lot of your medical problems including lesions in the brain that could be triggering sz,
If I were in your place I would see a different neuro or as I mentioned see a Epileptologist at an Epilepsy Center which are at big hospitals or university hospitals Epileptologist deal with epilepsy and many other neurology disorders.
There will be times when I get dizzy right before a sz. happens but I haven't had vertigo problems. I do have bi lateral lesions on each side of my brain and I will often see colors of the rainbow right before a complex partial sz. this showed my neuro that some of my sz. were coming from the optical lobe of my brain which is in the back of my head. Since my surgery my sz. have been reduced greatly from 300 a yr. to the lowest which was 68 sz. last yr. I had 114 sz. but many of them were aura sz. I can live with that many sz. and I seldom have 20 sz. a month like I used to unless I'm sick with a cold or virus. My Dr. has also found out that I have "seasonal sz." meaning that in the fall and winter I have more sz. because there's less serotonin out there where in the spring and summer there's more serotonin and that helps reduce my sz. Just keep track of how you feel and write down when you get the headaches along with any possible sz. If you are at an age where your hormones are changing in life this can sometime increase or decrease the neurology problems it all depends on the person and their body chemistry. I have fewer sz. now than I did in my 20's. Also if you use a cell phone this could be causing the headaches and the neuropathy problems I found this out when I had my last e.e.g. done and my Dr. was using a cell phone on purpose at certain times during the e.e.g. but I didn't know it and each time the cell phone was being used I had a sz. all of this happened because of the frequency of the cell phone and my Dr. found out I was sensitive to that frequency take note if you are using a cell phone or others around you are using their phone even if they are texting this could be some of the problem. Here's wishing you well and May God Bless You!
Sue

Hi Sue

the neurologist I am seeing is in consultation. He is at a Neuropathy center School of Medicine at a University Hospital. It is a long drive there. He is a consultant, and I get the feeling, he is only diagnosing, then tells me, then documents in his notes" she was advised".

so I guess it is up to my local neurologist. I got some notes faxed to him to day. He is going out on vacation for 3 weeks, but after reading the note, he left me a script for EEG. I need to speak to my pulmonologist, to order a sleep study. I called my Primary Care doctor secretary said I have to go to the pulmonologist. I have a feeling what I want to have done in tests, but seems I have to go to all theese appointments.
You are right, it need to be a night study with EEG. Right?
Yes, perhaps something some how got disturbed in the brain during the aneurysm repair. I had Endovascular Embolization with stent done.to the aneurysm. It did trigger a CVA.
It was after that procedure all the neuropathy started, and got worse and worse. But I do not understand the conection.
And for months I have had this seizure like episodes.
I will have to get a special neurologist like you said. The script for EEG, I will not have it, I will wait until I can get the right procedure ordered.

The visual sensation you mentioned, is similar to mine. It happened 3 times. It was a zigzag bright light ring in my visual field, that lasted 30 minutes. Very bright, I could see through it. I saw a neuro optomologist. He said this was a Aura to Migrane.
My aneurysm was just behind the left optic nerve. and the pulsating aneurysm might have triggered it.
All the doctors have not been able to find out why I have the neuropathy. except likely the vasculitis.
Our brain is a delicate creation, so I guess, any thing can happen. I have known all this time that something was wrong, I could feel it.
I will make sure I get those tests you mentioned.
I am sorry to hear that you have had so many seizures. Does it happen any time during the day or night? I am almost scared to go to sleep now. Some nights, after having had one of those episodes, I just stayed up for the rest of the night. I usually get it around 1 am and 3 am.
I got an advise that it could be triggered by hypoxia, you told me that, and anotheer person told me that too.
Take care
Synnove

Hi Synnove,

The visual sensation you mentioned sounds like a aura (simple partial) sz, but I have never had one last 30 min. they usually last only a few seconds. When I have a sz. it usually happens anytime between 6 am and 3 pm very seldom do I have sz. in the evening. I've gotten so used to them they don't bother me anymore and since I had the surgery I don't get tired nor do I get a headache after the surgery.
I have been told that a migraine is a chemical sz. but I've never been told it was an aura to a migraine. Keep track on how the weather is because often a low pressure in the weather will give some people migraine headaches. I often get headaches right before it's going to rain or snow do to the heaviness in the air which in turn affects a persons hormones and can trigger sz. for some people.
If you can see an Epileptologist they will be able to help you the most. Also if you haven't notice I sent you a message check the top of the right screen where it says private message and click that. I also think you should get a lot more rest this can trigger sz. like crazy for me. Here's wishing you well and May God Bless You!

Sue

thank you for reply.
Yes, there actually is such a thing called a Aura before a Migrane. Actually, I had to go to a neuroopthomologist. I had to describe the visual episode, and compare to pictures from medical text books. I was told this visual episodes can come in form of what they call a Scotoma. It can actualy also come withouth the pain in head. and they still called it migrane Aura. There are Auras with or without the heasache. ----I have not had theese Auras for quite some time, but I have had plenty of headache,
Usually "Ice Pick Headache" Now I have had a constant headache for 4 days around left eye.
Any way, and any how, I do not know what is the worst. The peripheral and autonomic neuropathy is making me quite ill. I have a feeling of constant vibration inside in all the small nerve fibers, I feel feverish, but have no fever. I am very dizzy constantly.
I will se a new doctor on Thursday. This will be my new Primary care doctor. The one I had, did not help me much. I will also try to have the sleep study with EEG done, as soon as I can get the right script. I can pretty much book my own procedures, as long as I have a script.
So thank you for the help. I hope I can pull this through.

Hi Synnove,

I wish you only the best of luck with the Dr. the dizziness could be low blood pressure it happens to me every now and then, drink a lot of fluids especially water to see if that stops the dizziness. If you are feeling a vibration this is a form of a motor sz. that some people have where they get a strange feeling down their side or in their arm or leg but it usually happens on one side of the body only. Could you be getting a cold or a virus of some type feeling feverish? If you are this could trigger more sz. I sure hope you are okay and my prayers are with you. Good luck with the Dr. and the tests. Wishing you only the best of luck and May God Bless You!

Sue

hi Sue
I am picking up on this thread again. Since I last posted, I have been having those night episodes frequently.
I now have had visits with my neurologist. He is now arranging for me to be admitted as in patient on a special neuro unit in a hospital He said it will be 48 or 72 hours. They will do a video EEG monitoring test regarding seizures.
He is also booking for a spinal tap, and is testing for a few things. MS included.
My neuropathy is now so bad. I was on a steroid treatment with Prednisone for a few weeks, and it helped. That tells me there is a terrible inflamation on my whoke nervous system. Because those fine vibration like neuropathy pain I used to feel they got better. But now I am tapering the Prednisone over 4 weeks, for the last few days I felt very sick, ( as due to the Steroid was tapered)
I have to tell the doctor. I do beleave that my symptoms are from a systemic attack on my nervous system. I am very scared of those night episodes, I woke up and had one of those symptoms, as I woke up, I felt i urinated, very embarasing, but I thought it was like a seizure so I had to tell the doctor What do you think about this?
I thank you for the information to ask for a PET scan abd SPECT scan Can you explain theese?