Just Diagnosed..hard time accepting

[Jan4you]

Hello everyone ~! I am used to forums and was on an epilepsy forum in 2000 for MY HUSBAND!! Wanted infor and support to help him.

He died after fighting epilepsy for 46 of his 52 year..painlessly.. in bed. NOT SUDEP. He was toxic..brain shut off.

OK..have a complex medical history. In last year have 5 new diagnoses!!

Go to new neuro (my 5th- for other conditions) because of "getting lost/panicky" driving on familiar street with distortion of time..weak legs.. ran home and guess I fell asleep only to wake up "totally disoriented."

Then the next day had one of my "episodes" following a epidural procedure on my lumbar spine..I go unresponsive for 3 hours..can HEAR..but cannot move..paralyzed. Had these infrequently over last 18 years. No one is sure what that is.. the kidney problem can cause paralysis..autonomic symptoms like getting tachy with BP/HR going up..then cannot MOVE.

I am now 61yo widowed for 3 years. My new diagnoses are: (1)Dysautomonia (autonomic dysfunction=unregulated BP/HR) 2). SICCA syndrome or Sjogren's.. (3) Gitellman's rare kidney disorder where my electrolytes are wasted by kidneys a MAJOR interference with MEDS..then NOW get diagnosed with (4) simple and Complex partials (never TC) AND (5) MS..again !!

Was just placed on generic of Trileptal which my kidney doc had to approve as it affects the sodium levels..he approved it.. only to find out I have about EVERY side effect there is including HIGH BP.. RASH.. DIZZY DIZZY DIZZY..off balance.. severe HEADACHE and my new neuro is out of the Country for death in his family. End up in ER to find out YES my sodium level is LOW. So I am being weaned off Trileptal.

I am not sure what my "simple partials" are.. just not sure. I think they are part of my autonomic signs.. could that be?

Complex partials..yeah.. know I "make mistakes" at work for years now. I totally "miss" what I hear..write things that are wrong with NO memory of doing it.. think they only last a few seconds.

Neuro has to try and convince me I was having seizures with my being lost being Jamais vu I guess???

I am really scared I cannot work with side effects..dread the "next" AE. I DRIVE for a living going from place to place doing hospice social work.

Feeling rather lost..left out..who would think after advocating for years for my husband..warning his doc he could die.. he does..and now I HAVE SEIZURES???

Jan

 

[Nakamova]

Hi Jan, welcome to CWE!

This is a great community with tons of support, and many different forums to contribute to depending on your moods or interests.

Did the neurologist give you an idea of what might be responsible for your seizures? Some of the things you mention, like the electrolyte imbalance and blood pressure issues could be contributing factors or trigger for your seizures.

Best,
Nakamova

 

[Jan4you]

Hi Jan, welcome to CWE!

This is a great community with tons of support, and many different forums to contribute to depending on your moods or interests.

Did the neurologist give you an idea of what might be responsible for your seizures? Some of the things you mention, like the electrolyte imbalance and blood pressure issues could be contributing factors or trigger for your seizures.

Best,
Nakamova

Well he ordered another BRAIN MRI and saw my multiple lesions which gave him the "temporal lobe" lesions for temportal lobe epilepsy. Also mentioned I was NOT a candidate for brain surgery ( what???) as i have lesions on both right and left temporal lobes.

He also thinks the other lesions are contributing to MS.

My husband had right temporal lobectomy so hearding this at first follow up aptt through me.

Thanks so much for responding.

sitting home feeling sorry for myself..mifted...with rash spreading.. fun

and you.. how are you doing?

Warmly Jan

 

[RobinN]

Hi Jan - have you been tested for Lupus?
Also you might check out this page:
http://dogtorj.com/?page_id=418

 

[Jan4you]

OH yes with MS..they check EVERYTHING.. had 2 Rheumies along with MS neuros

But thanks for that response.

How are you?

Warmly, Jan

 

[RobinN]

I am fine. Enjoying having my son who is a US Marine home for the weekend, and the beautiful CA weather.

 

[Jan4you]

Wow Robin how wonderful that your son is home. CA weather is envied..we just had our first tast of Spring..and it SNOWED today.

You look just like Greta VanSustern..I am sure others have told you..yes?
But..take it as a compliment please

Jan

 

[RobinN]

Thank you, but I have never heard that before though.
I do take it as a compliment as she is bright and I enjoy watching her show.

 

[Nakamova]

Hi Jan --

Has your neuro have a treatment plan for the seizures once you're weaned off the Trileptal?

 

[Jan4you]

OH I am sure he is thinking of what will work.

My rash is SREADING and now I am down to one more pill..will ask if I can skip that as the rash is really really spreading.

Next he has to be careful of what goes through the kidneys with my rare kidney disease.

It will be a battle.

Thanks for your response.

Jan

 

[dfwtexas]

Hi Jan, welcome to our group. I got diagnosed two years ago at age 47. Your descriptions remind me of my symptoms....I would come to and be doing something weird at work....I would come to and be driving aimlessly in my own neighborhood. Luckily I my infection disease doc knew right away it was seizures....I thought I had some kind of sleep disorder. I was a sleep walker as a child and I described it to my doc as extreme sleepwalking!
I take Keppra....but with your kidney problems you would be able to as it is one of the few seizure meds that metabolizes thru the kidneys. I have some liver issues and most seizure med go thru liver.
Your heading hits us all...it is how I felt....and I still have days that it gets me down...but coming here helps to talk to others that understand how you feel.
jenn

 

[Jan4you]

Thanks Jen..appreciate your input and supportive welcome.

My old epilepsy forum has windled down and not very many left.

So this forum has been wonderful..once I figure out which part to leave posts LOL.

I did not find myself doing "weird" things..as I never know I am doing these things.. I never know unless someone tells me. I was aware that I was driving but time was distorted and I panicked when I could not recognize where I was for a few miles..then my legs were weak.. then just fell asleep and woke up disoriented. Weird stuff.

Yes getting an AED will be challenging. ..won't it?

Jan

 

[Bernard]

Hi Jan, welcome to the forum. :hello:

Take heart, there are some things you can do to help minimize a dependence upon AEDs (and the pursuant side effects).

BTW, if you have kidney problems, Keppra is not for you. It's the only AED that metabolizes in the kidneys.

 

[dfwtexas]

I am sorryl just re read my post...I meant to say you could NOT take Keppra due to kidney problems....my brain is broken today for writing!

 

[Bernard]

lol... I didn't read the whole thread before posting. Looks like you beat me to it. :mrt:

 

[Jan4you]

Thanks for your response and suggestions

Keppra is not the only med via kidneys as Trileptal and I think Lamictal are too. Al will be a problem for me.

I used to see this amazing specialized nutritionist. He helped me with many of my "symptoms" but cannot diagnose..cure.. or treat. He CAN detox..build up systems and help make life healthier.

I cannot afford him and MDs. I know my doc will put me on another AED and another. I want to skip the inevitiable. Testing the DNA for what meds may work is a great idea. I KNOW seizure docs want you on something to prevent status seizures.

Its a difficult debate..meds vs no meds and the risk seizures can do. I know I could not keep my job.. or get SSDI if I do not try the meds.

Thanks guys/gals

Jan

 

[music man]

Hi Jan
Just wanted you to know that you have made a great first step in locating this forum. The folks here are very knowledgable and quite supportive. I do not experience your symptoms but can commiserate around the frustration, anger, and fear that this illness can cause. Personally i have struggled with acceptance and mightly so but i'm getting there. This doesn't mean that i don't advocate for myself and do whatever it takes to make my life better. Iv'e lost my licence , home, relationship, and career now on the line
However i'm still here and it's gonna get better. Hang in there !
Ed.

 

[Jan4you]

Thanks Ed for your response. I do love your ID name..my fav musical is Music Man..are you in some kind of music??

I wonder if and when I'll work and still tolerate medications. I have so many complications to taking them as they interact with my other conditions.

I dont have TC..hope I never do. BUt NO one has ever witnessed me having any seizures. THAT is why its so hard to accept. AND yet he added in the same appt MS too.

Thanks again for your kind remarks and knowing that I am not alone. Yes I agree ..this is a great forum..easy to get into..and like to know when I have responses. But do not know which part I should post in. Hmmm...its confusing.

I am still awaiting approval to join another forum for weeks now!! And the other one I used to be only has a few posts and a few people responding.

I am on a couple of other forum for "other" conditions. Forum folks are super and so dang supportive

Take care

Warmly, Jan

 

[Meetz1064]

I'm glad

you found your way here, Jan. I'm sure you're going to find this quite a fun place to be, and plenty of things that you can learn, too. Perhaps even help others..

Sorry to hear about all the issues you're having. It is quite a bit to deal with....but you seem to be handling it for now. We'll help you with the support, don't worry about that.

You may want to also talk to your pharmacist to see if they have other suggestions for meds......they're usually my first place to ask questions. Sure, the docs are supposed to know the meds inside and out, BUT, they have so many other things to deal with, I'd rather ask my pharmacist--that's their specialty after all.

Have you considered keeping an E journal to see if there is a pattern to the seizures? Or changing your diet to help? I'm one of those that the diet change has helped--for more than just E--and the difference in seizures is definitely there.

Take care.

Meetz
:rock:

 

[Jan4you]

HI Meetz..thanks for you kind words and responses. How are you doing? What kind of sz do you have?

IF you don't mind..what kind of diet are you following? I am willing to try anthing.

Yes keeping a journal would help. Its the simple partials I am confused about. Is that just the "aura"???

Yes I agree this is the best forum.

Warmlyl, Jan