Epilepsy For support and discussion about Epilepsy and Seizure Disorders.


advertisement
Reply
 
Thread Tools Display Modes
Old 01-30-2017, 06:29 AM #21
Porkette Porkette is offline
Senior Member
 
Join Date: Aug 2006
Location: NY
Posts: 1,200
15 yr Member
Porkette Porkette is offline
Senior Member
 
Join Date: Aug 2006
Location: NY
Posts: 1,200
15 yr Member
Default

Hi Elaine,

I wish you the best of luck with your neuro appt. You may want to ask your neuro to do a DNA test on you to find the best seizure med for you all it takes is a few tubes of blood and some salvia from the inside of your mouth. Then the Dr. can find the correct seizure med for you with the least side effect.
Be careful if you have to go on med for your bronchitis I had that a few yrs. ago and my family Dr. put me on some med and it caused my seizure med to become toxic. I wish you only the best and May God Bless You!

Sue
Porkette is offline   Reply With QuoteReply With Quote

advertisement
Old 01-30-2017, 08:05 AM #22
ElaineD's Avatar
ElaineD ElaineD is offline
Member
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
Member
ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
Default

Quote:
Originally Posted by Porkette View Post
Hi Elaine,

I wish you the best of luck with your neuro appt. You may want to ask your neuro to do a DNA test on you to find the best seizure med for you all it takes is a few tubes of blood and some salvia from the inside of your mouth. Then the Dr. can find the correct seizure med for you with the least side effect.
Be careful if you have to go on med for your bronchitis I had that a few yrs. ago and my family Dr. put me on some med and it caused my seizure med to become toxic. I wish you only the best and May God Bless You!

Sue
Thanks for the 'heads up' about bronchitis, medications, seizure medications.

It does seem like it's always something.

I have a raging headache and slept really badly last night. I do want to see the doctor today, for sure.

But really, I'm just so miserable.

I'll let you know how the appointment goes.

Hugs, ElaineD
ElaineD is offline   Reply With QuoteReply With Quote
Old 01-30-2017, 09:45 PM #23
ElaineD's Avatar
ElaineD ElaineD is offline
Member
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
Member
ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
Default

So Dearest Sue,

I saw the Epilepsy Specialist today. The diagnosis: my jerking and trembling, and my episodes of collapsing are related to worsening damage to my Autonomic Nervous System. I don't have Epilepsy

Autonomic nervous system - Wikipedia


The second 'bad news' is that there no medication for my problem. The shaking is just moderately unpleasant, but the collapsing to the ground is downright inconvenient.

So, I will just have this condition, as it stays the same or gets worse, with no treatment.

I am very sick with this bronchitis which is going around, and that is new for me, too. I haven't been sick for over 3.5 years, since I started IVIG. So I am just not a happy camper all around.

The collapsing is an orthostatic problem (when I stand up) and a failure of my autonomic system to make the adjustments necessary to stand up without falling down. I've been tested several times for orthostatic hypotension (falling blood pressure on standing) and it isn't that So it's some other part of the adjustment system.

In fact everything is way more complicated in our bodies than those cartoon diagrams that I saw growing up. The human body is amazingly complex, and every time I see a new specialist my mind boggles.

The shaking and jerking and trembling of my left side is less clear to the doctor, but he's very clear that I don't have any form of epilepsy and that there isn't any known treatment or medication. So I will always wonder when I will collapse again?

I feel very alone in this, but my husband is very supportive, which is a big help.

Hugs, ElaineD
ElaineD is offline   Reply With QuoteReply With Quote
Old 01-31-2017, 06:40 AM #24
Porkette Porkette is offline
Senior Member
 
Join Date: Aug 2006
Location: NY
Posts: 1,200
15 yr Member
Porkette Porkette is offline
Senior Member
 
Join Date: Aug 2006
Location: NY
Posts: 1,200
15 yr Member
Default

Hi Elaine,

I would get a second opinion if it were me, if I may ask after you've had these possible seizures do you have a headache, feel confused after it's over, and feel tired? If you do these are seizures. Also from what I read about what the Dr. said you have it can cause heart problems and take my word I have that. Heart problems can lead to seizures sometimes do to lack of blood flow to the brain. It's up to you but I would get another Drs. opinion.
Wishing You only the Best and May God Bless You!

Sue
Porkette is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ElaineD (01-31-2017)
Old 01-31-2017, 10:16 AM #25
ElaineD's Avatar
ElaineD ElaineD is offline
Member
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
Member
ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
Default

Those are all the questions the Epilepsy specialist asked:

I don't get confused.

I don't have a headache.

I don't wet myself.

I don't feel tired.

I don't black out.

I just go down, and get back up (with difficulty because I have mobility problems).

I've had two EEGs and a sleep study with EEG in the past 3 years...all perfectly normal.

So, I really think he's right.

So I'm slowly stopping the Depakote. The doctor said if the Depakote didn't help, nothing would.

And the condition developed while I was taking 3600 mg Neurontin (Gabapentin), another reason I wondered how it could be true seizures.

SO, I'm in bed today with the bronchitis from h..l. I guess it lasts up to 3 weeks. So I'm a bed potato for today.

Thanks for all your support and care over the past week, Sue.

Love, ElaineD
ElaineD is offline   Reply With QuoteReply With Quote
Old 02-01-2017, 06:50 AM #26
Porkette Porkette is offline
Senior Member
 
Join Date: Aug 2006
Location: NY
Posts: 1,200
15 yr Member
Porkette Porkette is offline
Senior Member
 
Join Date: Aug 2006
Location: NY
Posts: 1,200
15 yr Member
Default

Hi Elaine,

I think I know what your problem may be and that's the Neurontin. I was on
it for a short time for a concussion and it caused me to have status epilepticus seizures, then I saw on NBC DATELINE where 2 employees reported the drug co. because they found out the drug can cause seizures for people who have never had a seizure in there life. If you find you aren't having anymore problems once you get off the Neurontin you may want to see a lawyer. There's millions in lawsuits against this drug co. for what it's done to people.
Wishing you only the best and May God Bless You!

Sue
Porkette is offline   Reply With QuoteReply With Quote
Old 02-01-2017, 12:45 PM #27
ElaineD's Avatar
ElaineD ElaineD is offline
Member
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
Member
ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
Default

Quote:
Originally Posted by Porkette View Post
Hi Elaine,

I think I know what your problem may be and that's the Neurontin. I was on
it for a short time for a concussion and it caused me to have status epilepticus seizures, then I saw on NBC DATELINE where 2 employees reported the drug co. because they found out the drug can cause seizures for people who have never had a seizure in there life. If you find you aren't having anymore problems once you get off the Neurontin you may want to see a lawyer. There's millions in lawsuits against this drug co. for what it's done to people.
Wishing you only the best and May God Bless You!

Sue
Hi Sue, I was on Neurontin for two years before the problem showed up. I did my research, and withdrew from the Neurontin. The problem did NOT go away.

I don't think it was the Neurontin.

My doctor for Epilepsy works with my ordinary Neurologist....all connected to Duke Hospital. The sense is that since I have a host of neurological problems related to autonomic neuropathy that in all probably this is just another piece of that package.

Thanks for all your help.

Hugs, Elaine
ElaineD is offline   Reply With QuoteReply With Quote
Reply

Tags
attacks, episodes, jerks, medication, myoclonus

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
progressive multifocal myoclonus-diagnosis music girl Movement Disorders 2 07-30-2011 01:36 PM
progressive multifocal myoclonus music girl New Member Introductions 5 12-03-2010 01:07 AM
Progressive Myoclonus Epilepsy Memphis General Health Conditions & Rare Disorders 0 07-25-2009 04:01 PM
Primary Progressive? texans88 Multiple Sclerosis 9 05-28-2008 07:51 PM
Primary Progressive?? texans88 New Member Introductions 2 05-27-2008 01:35 PM


All times are GMT -5. The time now is 05:36 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.