Rare/Unusual epilepsy?

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strike333

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I have an unusual chronic electric sensation deep in my brain that might be rare type of epilepsy? I have no uncontrol movement/motor issue. This happened after a chemical trauma to my brain. Eyedrop medication cyclogyl and prednisolone somehow seeped into my brain during sleep and reacted intensely, I recovered after a day but a few days later, my chronic brain symptom started ever since. Unfortunately, my mri and eeg showed nothing. Possibly because maybe this electric sensation I'm feeling in my brain(near pituitary area) is too deep for eeg to detect seizure/sensation? I wanted to try aed to see if it helps with my symptom, but doctor can't refer me to epilepsy clinic/let me try aed without a positive test or some kind of uncontrol movement symptom. Can epilepsy be odd sensation alone without uncontrol movement? If anyone have any suggestion? I'm thinking of traveling to buffalo(im from Toronto) to get a brain mri scan with seizure protocol? Should I try to get sleep eeg test? Any way to get aed? Thanks for suggestion
 
Hi Strike,

Welcome to the forum CWE! What you need to do is go to a Epilepsy Center which are usually at University hospitals or
really big hospitals and see a Epileptologist which is a Dr. that specializes in epilepsy. This Dr. will speak with you and probably
want to do a lot of tests on you. Just like you I had an e.e.g but the damage was so deep in my brain that the e.e.g. didn't pick it up
What you may want to ask the Dr. to do is a PET scan and Spect scan along with a Wada test these tests show a lot more detail.
You won't be able to get any AED's until a Dr. sees you so in the meantime cut back on the carbs and starch foods and stay away
from diet soda or anything with NutraSweet in it. To many carbs and starch foods turn into sugar and that fires up the neurons
in the brain which can trigger seizures. Also if you use a cell phone take note if you are having these seizures when you use the
phone because sometimes a person is cell phone sensitive meaning the frequency of the phone will trigger seizures. I found that
out when my Epileptologist did a e.e.g on me and was using his cell phone on purpose but I didn't know it and when he used his
phone the e.e.g spiked up high. Strong Memorial Hospital in Rochester, NY has a great Epilepsy Center there you should check that
out since it's about 30 min. from Buffalo.
I wish you the best of luck and May God Bless You,

Sue
 
My family doctor finally referred me to an epilepsy clinic UHN Krembil brain institute, which is the best in Ontario. Hopefully they accept me, if they do I have to wait 3-4 months for an appointment. I wonder around how much to see a epileptologist at that Epilepsy center you recommended? You heard anyone taking the brain MRI with seizure protocol if it is any good? Thanks
 
Hi Strike,

Take my word it's always a long wait to get in to see an Epileptologist at an Epilepsy Center. It's been a few yrs. since I saw
my Epileptologist because he was over 100 miles away from my home and he told me to see a neurologist close to home
after I had the brain surgery but I paid $100.00 just to walk into his office and then he charged me about $100.00 in the beginning
but it went up after that. As long as you have ins. you should be okay. I've had the MRI that you mentioned and that is helpful
but the Dr. also likes doing the e.e.g. I wish you the best of luck and May God Bless You!

Sue
 
I read some epilepsy patient may be candidate for surgery if they don't tolerate medication well? Do you think specialist would respect patients who want surgery even though medication works for them? Perhaps some patient may lie that the drugs are't good just so they can ask for surgery? Do you think surgery is a lot more possible than before for epilepsy patient due to laser/gamma knife surgery technology? What's the picture in all this? thanks
 
I read some epilepsy patient may be candidate for surgery if they don't tolerate medication well? Do you think specialist would respect patients who want surgery even though medication works for them? Perhaps some patient may lie that the drugs are't good just so they can ask for surgery? Do you think surgery is a lot more possible than before for epilepsy patient due to laser/gamma knife surgery technology? What's the picture in all this? thanks
 
Hi Strike,

You can set up an appt. to see a Epileptologist at an Epilepsy Center where they have the neuropsychologist
and neurosurgeon working with the Epileptologist as a team. Where I went as long as you were having seizures
and it wasn't a risk they would do the surgery. I was drug resistant, so it didn't take long to get in for the surgery
but I will tell you that you will have to go through a lot of tests to make sure it's safe to have the surgery done with
no risks. I had ultrasound surgery done the gamma knife surgery wasn't out yet but take my word that's the way
to go because all they do is pinpoint the area that is triggering the seizures then they cut into you and put the gamma
knife on that area and the damage is gone by using HF radio waves. Often a person can go home the same day
they had surgery but sometimes they will want the patient to stay overnight for observation. I will tell you that you
are going to be tired for a couple of weeks after surgery which is normal and you will only be able to eat soft foods
for awhile because it hurts to chew food. I wish you the best of luck and May God Bless You,

Sue
 
Hi strike,

That's great to hear and I wish you the best of luck. One thing you may want to do is write down any
questions you have and take them with you so you don't forget to ask them. I have done that many times.
Wishing you the best of luck and May God Bless You,

Sue
 
unfortunately, the specialist doesn't want to believe I have rare type of epilepsy, he decided not to do any test or let me try any medication. Probably because I don't have any classic symptoms of epilepsy like uncontrolled movement. My physical tests are all fine. Probably telling him that my electric sensation deep in my brain is constantly there gave him a red flag, thinking it shouldn't be constant. He probably didn't believe eye drop medication can somehow seeped into my brain during sleep and reacted intensely, which I know it did happen.

Now I have to decide to go to psychiatrist, which I have seen in the past and have already tried different medications without success. Clonazepam gave the best relieve but only around 5-10%. I think medication that helps with GABA would give the best chance in giving me relieve. Clonazepam works on GABA and from what I read, it works on anxiety and seizure. If you guys have any medication suggestion I can try that help with GABA. Things I have tried that did not help: Latuda, diazepam, abilify, quetiapine, memantine, buspirone. Medications I'm interested in trying because they work on GABA: vigabatrin, oxcarbazepine, carbamazepine, phenobarbital. Not sure if psychiatrist would let me try them because they are seizure medication, but they do work on GABA.

Some options I have:

Go to Buffalo to take MRI with seizure protocol that cost around $600 to hopefully get something suspicious in the imaging to hopefully convince epilepsy specialist to help me?

See a epilepsy specialist in the US? they may be more open to letting me try seizure medication that works on GABA or something? I don't have insurance, if they order tests, I probably can't afford yet. I can also go to other countries like mexico, india, turkey or china for cheaper alternative. But there's also a chance I get rejected everywhere because I don't have the classic epilepsy symptom or my rare symptom is too foreign to them.

I can try to order epilepsy medication without prescription from india or other places to try myself. I may get scammed, the biggest worry would be not getting legitimate medication. maybe someone have suggestion on this?

thanks for any suggestions, Harry
 
Hi Strike,

What you may want to try is buying zinc, and taking 50mg. once a day along with B12 1000 mcg. once a day and then
you can buy calicum, magnesium and zinc all together at a drug store or dept. store. When I take these meds each day it
has reduced my seizures a lot. Zinc helps me very much.
I wish you the best of luck and May God Bless You,

Sue
 
Interestingly, beside effects on skeletal mineralization, TNAP-KO mice develop epileptic seizures whose origin has been linked to deficiency in pyridoxal 5′-phosphate (PLP) and GABA metabolism (Waymire et al., 1995; Narisawa et al., 2001). It was proposed that in TNAP-KO mice, PLP, one of the AP substrates (Fedde and Whyte, 1990), can not enter the intracellular compartment where it functions as a GAD65 cofactor (Martin and Barke, 1998; Soghomonian and Martin, 1998), resulting in a decrease in GABA synthesis which induces changes in the cortical balance between excitation and inhibition.


My story: https://www.coping-with-epilepsy.com/threads/40-years-on-vitamin-b6.11674/ (It is now over 53 years using B6 to help control a rare condition known as 'PNPO Deficiency', Still no AEDs).

**DO NOT ALTER ANY MADICATION WITHOUT YOUR DOCTOR'S CONSENT**
 
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I am someone that doesn't do well on medication. I am medication resistant. That is what got me to have the left temporal lobe removal in 1995. We could not find the right combination that would work together. At this point in time the count for medication usage is now at #32.
 
Hi suebear, I am also medication (AED) resistant. Just wondering if the left temporal lobe removal has worked for you? I am unable to have surgery due to the nature of my seizures, but, which the dietary supplements control (mainly B6 and B2). The only seizure type which I now have is an Atypical Absence Seizure. Just curious, has your specialist ever suggested trying you on any of the alterative treatments available, or just AEDs before you under went the surgery? I am well aware that as with any of the individual AEDs/AED combos, these alternative treatments also do not work for everyone.

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**
 
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