[Synnove]

Hello, I am new to this forum, I have been on the Neuropathy forum for some time.
I am a 64 year old woman that has had multiple neurological problems over the last 2 years. It put me out of work
The reason I came here today, is that my neurologist told me yesterday, that the symptoms I am having is likely seizures.
My problems first started with Cerebral Aneurysm. Small CVA.( stent related)
TIA, Left Brachial Neuritis, History of Cervical disc bulging of C6-C7,with radiculopathy, Small vessel Vasculitis, Sensory motor Polyneuropathy, Small Fiber Neuropathy and Autonomic Neuropathy.
I have had numerous tests and procedures and seen multiple doctors.
I have a couple of good doctors, the above mentioned neurologist included.
I just now thought I had everything in order, diagnosis, treatment plan medications etc. I am on Lyrica and Amitriptyline for the relentless pain all over from neuropathy.
I am on Methatrexate for the vasculitis. Also on bloodthinners for strokeprevention.
This is the problem regarding seizure: For months now, I have had some strange episodes at night. But I thought all the time it was related to the vasculitis and the neuropathy.
I will suddenly wake up at night with a strange feeling of intense warmt spreding out over my body. Sometimes it can be only one side. I feel almost as I am pinned down to the bed, but I can move all my extremeties, and I have no tremors. I can feel a strange vibratory noyse inside, and I can actually hear it in my head. The vibration goes very fast, like a drilling machine, then the vibration stopps momentarily ( about 1/2 - 1 second) and then continues until it stoppes for a second again. This is only felt and heard. No tremors seen.
These episodes usually last about 1 hour or so. Because I do have the neuropathy with diffused burning all over, I had thought it was related to that, and I kept saying to my doctors, that I think I have something systemic and suggested spinal tap. I never had any fever. Doctors keps saying no.

So no, I had never thought that I had seizures, and dread having to deal with this too, and having to research it.
The doctor said he will do an EEG.
Does this sound like a sizure?
Thankful for any guidance

[Porkette]

Hi Synnove,

What you are describing sounds like you may be having a possible simple partial seizure also called an aura seizure. Since this is happening at night there's a possibility that you may be having a sleep disorder like sleep apnea that is causing this. You might want to consider having a sleep study done to see if you are having seizures in your sleep. I know I had one this past spring and found I was having seizures in my sleep. Also at one time I was taking Lyrica and it caused me to have more seizures.
To find out the detail of what's really going on you may want to see an Epileptologist these Drs. specialize in epilepsy and can treat the problem a lot better as well as tell you what's causing the possible seizures. Try taking vitamin B12 1000 mcg. once a day, cut back on the caffeine and anything with nutra sweet in it since these are things that can trigger seizures. Also take note that after the possible seizure do you feel confused, tired, and do you have a headache, if you notice any of these symptoms it could possibly be a seizure. Here's wishing you only the best and May God Bless You!

Sue

[Synnove]

Originally Posted by Porkette

Hi Synnove,

What you are describing sounds like you may be having a possible simple partial seizure also called an aura seizure. Since this is happening at night there's a possibility that you may be having a sleep disorder like sleep apnea that is causing this. You might want to consider having a sleep study done to see if you are having seizures in your sleep. I know I had one this past spring and found I was having seizures in my sleep. Also at one time I was taking Lyrica and it caused me to have more seizures.
To find out the detail of what's really going on you may want to see an Epileptologist these Drs. specialize in epilepsy and can treat the problem a lot better as well as tell you what's causing the possible seizures. Try taking vitamin B12 1000 mcg. once a day, cut back on the caffeine and anything with nutra sweet in it since these are things that can trigger seizures. Also take note that after the possible seizure do you feel confused, tired, and do you have a headache, if you notice any of these symptoms it could possibly be a seizure. Here's wishing you only the best and May God Bless You!

Sue

Thank you Sue.
No, I do not have any confusion . But I do have constant Ice Pick migrane headache, comes for days, then dissapears for a while. When I wake up, sometimes I feel that I wake up gasping for air. I do have a positive autonomic neuropathy, so there is possible, as you said some sleep apnea or something.
I realy want to have a sleep study. I called that neurologist office today, he is a professor at university specialising in neuropathy. So I got the secretary to fax his notes, where he recomend an EEG, to my local neurologist. This way, I can have my local neurologist order these test at my local hopital, then take it from there.
You are so right, when they read the notes to me, he is saying it could be Simple Partial seizure . This makes me real worried. I want to have the tests ASAP.
But what I am experiencing, is that we have to work so hard, push forward to get our medical tests and treatments. All theese doctors should have their offices staffed with RN, Nurse Practitioner and patients advocates setting up tests and doing patient education. Should have this kind of staffing instead of a lot of secretaries, medical assistants and people just taking you in to the room, checking you temperatur, and doing nothing else,
J
The doctor talked about possible antiseizure meds, but I am already on Lyrica, is that not an anti seizure med? As a matter of fact, I am trapping down on the dose, and adding Amitriptyline. May be that is why I am having these symptoms??? Then again, I have had this for months.
Thank you for your input.
How are you coping with your seizures?

[Porkette]

Hi Synnove,

Just like you I started having migraine headaches which in turn lead to sz. for me. Lyrica is a sz. med and it should help you but I have found that some sz. meds have not worked for me and that's why I requested a DNA test to be done so the Dr. could find the right kind of sz. med for me with the least side effect.
You should have an e.e.g. done and since you may have sleep apnea ask the Dr. to do a sleep deprived e.e.g. this is when a person has to stay away for most of the night and then have the e.e.g. done often sleepiness will trigger a sz. along with stress these are the 2 main things that can cause sz. and often hormones changing can cause sz. for some people.
The moment you get any signs of a sz. try and tighten up all the muscles in your body and make your hands into tight fists for a few seconds this can often stop a sz. I learned about yrs. ago from the neuro I had at the time and it has worked great. Besides having an e.e.g. done ask the Dr. to do an MRI on you and this should show any activity going on. Don't back down on the Dr. and tell them you want a sleep study done a.s.a.p. you have the right to have that done with no excuses from your Dr. I have had epilepsy for 41 yrs. and had 2 brain surgeries to help reduce my sz. and I'm very pleased. Here's wishing you only the best and May God Bless You!
Sue

[Synnove]

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

[Porkette]

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

[Synnove]

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

[Porkette]

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

[Synnove]

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.

[Porkette]

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