increased troubule with myoclonics and "auras"
 

Hi, please bear with me, lol

After a long journey with psychiatric misdiagnosis, it was determined last year through eeg testing/ct and mri testing that I have temporal lobe epilepsy, myoclonic seizures and also 4 separate migraine diagnoses (i think that separation is for insurance billing purposes).

I have a competent neuro who does great work with sleep disorders and epilepsy. But this month I have noticed an marked increase with for lack of a better word I will call "auras." Essentially I have had a 2 week migraine without any pain, but throbbing, all the visuals are there, I'm seeing auras around people, colors are vibrant like I'm having a TLE seizure, but I don't think I'm having seizures. No static noise, but I am having periods of confusion and memory loss. Also myoclonics are definitely increased.

I am either downright allergic or intolerant of a few AED's but the ones I'm currently on worked well up until now. I take a ton of b-vitamin supplements as recommended, lowered caffeine , eat very well, maintain good sleep hygiene and am really trying to figure out what else I can do.

Especially when it comes to the myoclonics. I am embarrassed by jerking, it is very noticeable, people ask me if I am okay, if they don't know my situation then it gets a little weird.

Hi Yagalada,

Welcome to the forum! I have had temporal lobe epilepsy (TLE) for 43 yrs. and just like you I have had myoclonic sz. and aura sz. also called simple partial sz. Most of my life I have had absence and complex partial sz. I found that taking vitamin B12 1000 mcg. once a day has reduced my sz. greatly and once I started taking vimpat the myoclonic sz. stopped.
Years ago when I was a kid I started having migraine headaches and that in turn started up the epilepsy. Try cutting back on carb and starch foods also this has helped me and keep track of all your sz. by writing down what time of day/night they happen along with the type of sz.
When I went in for my sleep study my Dr found I was having sz. in my sleep and they would happen 1-2 hrs. before I woke up each day. This may be what's going on with you.
When I have any type of sz. except an aura I will be confused and feel a little sleepy after the sz. this is all normal. My best advice to you is for you to start to see an Epileptologist at an Epilepsy Center. These Drs. specialize in epilepsy and know how to treat it very well.
To find the best sz. med for you ask your Dr. to do a DNA test on you then they can match up your body chemistry and the enzymes in your liver to the best sz. med with the least side effect. I wish you the best of luck and May God Bless You!

Sue

Hi Yagalada,

I forgot to tell you to decrease your aura sz. the moment you get any warning you are going to have a sz. tighten up the muscles in your body and make your hands into tight fists for a few seconds this will often stop the sz. I learned about this back in the 1970's
.
Another thing you can do is cold water therapy each day 3 times a day at the same time put a cold wash cloth on your face and the back of your neck and also do this anytime you start to feel a sz. start up. By doing this the cold water on your face calms the neurons down in the brain and it stops the sz. I was in a medical study with this and it showed each time before I had a sz. my body temperature was higher than normal and this in turn helped trigger the sz. but when the cold water was used each time the sz. reduced and the body temperature remained lower reducing sz. I wish you the best of luck and May God Bless You!

Sue

Nice to meet you!!
 

Welcome yagalada. :Wave-Hello:

update
 

Hi,
I know the pain of a dotor brushig this ofas psych.MY last visit the doc who is a Movement disorder doc came right out and said it wasnt myoclonus but a psychgenic disordeor or tics..ne exam just opinion.No tests planned just a increase in my PD meds.Nice and easy for them but not so good for me.More people are made aware now as I come close to sudden falls the jerks come alot after I get a sharp pin where my sciatice pain was.Very unpredictable.
Hopefully I can find a competent do who wants to spend time on this.

Last Augest Ithink i might had a seizure.I was riding in a car.MY PD was acting up very stiff,I got out and rode for a while started having this awful noise in my head and became incoherent.I wasnt unconsious but close it lsted about a hour.None since till my jerks ame in october

clonespan no good for pdhi i finaly went to the er .i got a video eeg and thoraic mri
 

hi went to ed aginst my ex doctors advice said they wouldnt do anything for me.i got the ed doc to keep me overnight ,two days and did eeg video,no seizures but i had good jerks throught out test and intense jerks with strobe light.mri was normal put me on cloneasan which made jerks worse during wearing off,forced out wanted a mri on lower back where sharp pain comes before jerks start,Came home very unstable need walker jerks the same before i went in.Now I find out clonespam is incompatable with mmy pd drugs.BP at hosptial was 100/56.Its about 130/80.
so im back homr and only have a inconculsive eeg ,jerks instabilty.Ir that the norm'head nurse said to her it looked like something was pricking my spine.
any suggestions almost sure not the steroid shot caused rge jerks in october
john

update my eeg points to spinal myoclonus.Also klonapin is not good to take if you have PD and use sinemet as it decreses the effectivness of the drug and also lowers bp no wonder i woke up with 100/56.glad i woke up hosptial must not be cross checking drugsthe bp drug losfisten alos has conflicts with pd drugs,have to find a safer hosptial,