Brain Damage.

[Bee91]

My doctor thinks I have brain damage because of my seizures. I used to had a couple of long seizures, but no doctor believed they were real. (At the time, I had no real diagnosis...they just thought it was a psychological problem)

Now, I have heart problems. I have low blood pressure (usually 90/70ish), bradycardia, and some sort of syncope. I didn't have any of these problems before I had seizures/ hit my head. (I hit my head which caused my seizures in case you didn't know)

Also, I have problems with coordination, memory and reflexes.

I haven't had an MRI or any other test in about a year, but when I did, it didn't show anything. My doctor said that just because it didn't show anything, doen't mean it's not there...He also thinks I got some damage in the part of the brain where it controls my heart, the reason why I am having heart problems all of a sudden.

I don't know about this...Why wouldn't the damage show up on the MRI? Do you think that it is likely that the heart problems are from brain damage...Maybe it was just...coincidental...?

Does anyone know what part of the brain would be affected with memory, coordination and reflexes?

[RobinN]

I would think an MRA would be a good idea in your case. It shows the health of the blood vessels of the brain.

Do they offer your any exercises to do to strenghten the brain function. I have read that stroke victims can grow new neurons afterwards. Do they have any suggestions on how to improve your memory, and coordination?

Zoes might have some suggestions after she returns. She has quite a story and has overcome a tremendous amount, but it hasn't happened without quite a lot of hard work on her part.

[Bernard]

See if you can find The Healing Power of Neurofeedback: The Revolutionary LENS Technique for Restoring Optimal Brain Function in a local library (or ask for it for a holiday gift). It is possible for the brain to recover from TBI.

[alivenwell]

Have you tried getting a test to monitor your heart rate? Also, have you checked your sugar level? I know a low sugar level can lead to a seizure-like state.

[Bee91]

Do they offer your any exercises to do to strenghten the brain function.

I did go to a neuropsychologist and he did a lot of fun (yeah right) tests to see how damaged my brain was...we haven't been back to get the results and I don't know when we will go back because of our schedules and he is so far away

[Bee91]

Have you tried getting a test to monitor your heart rate? Also, have you checked your sugar level? I know a low sugar level can lead to a seizure-like state.

No tests for heart rate...we have yet to find a pediatric cardiologist and adult cardiologist refuse to see me. My last cardiologist was a...meany


For a while, everytime I had a seizure they checked me blood sugar. It has always been within normal limits. (about 95...I guess that's normal?) I haven't checked after a seizure in a while though...

[alivenwell]

That might be something to check out. I know someone who has diabetes and if the sugar goes to low, then a pretty serious blackout can occur. I think a normal sugar level is 100, but I'd have to check that out. 95 sounds pretty good to me.

[alivenwell]

I also know somebody who had a cardioversion. That procedure basically stops the heart and shocks it into a normal rhythm. I've heard good and bad news about this procedure. One person claims that she got pulmonary hypertension and out of breath a lot from the procedure. She had an irregular heart beat to start with, but it sounds like it would have been a smarter move to get a pacemaker.

[brain]

Now, I have heart problems. I have low blood pressure (usually 90/70ish),

I just saw my Cardiologist today, had the
routine workup - including extended EKG run,
and my HR/BP, and it was same old, same old.
Low BP ( 90/67 ), HR @ S-Tach ( 148 ). But
he didn't say so much on the EKG, as it fluctuates
so much; but it's not unusual for me. He ordered
up Lab work-up, and will see me again next
month.

But in addition I must add, he's aware when
I have seizure(s) or about to go into seizure(s),
my BP will soar (it's been recorded as high as
the last time I can remember 198/228 during
seizure mode before it drops when I'm out of
it). He saw that on the Holter Monitor and that
was also when Rare PACS without atrial runs
also shows up ~ during that time. There's been
times I'm close to Super Tachys, so my cardiac
does go haywire.

So it's not unusual to have Epilepsy & Cardiac
in conjunction with each other. That's why it's
important to have a great team of Doctors.
Who are in tune with each other.

----------------------------------

I also want to add:

I do have and sustained brain damages, and
have damages in progress.

[alivenwell]

It sounds like you're trying every possible avenue. My thoughts were that maybe a pacemaker and VNS could act in conjunction to regulate both your heart and brain waves, especially during a seizure.

[KAM]

Here is a link for a quick map of the brain and its functions, it also gives info on what side effects can occur if certain areas are damaged:

http://www.neuroskills.com/brain.shtml#map

[Bee91]

Yeah..I would love to find a good team..but there is no good children's hospital's around here...The only good one is an hour and a half away...and with scheduling...yeah...its a mess...


Thanks for the link!! I saved it in my favorites!

Yeah...whenever I go to the hospital they always ask me...oh you must be a runner cos of how low my heart rate is...I am NOT a runner. They wont do anything about it though...It goes down to about 35ish even when Im awake...and according to one of the nurses, thats the same as Lance Armstrong...and I am not even close to being as athletic as he is...

[alivenwell]

Have you been encouraged to walk? I've been averaging 2 miles every day with my dog. There are some days that this dog is my primary encouragement. I am curious if the walking, as a mild exercise, could strengthen your heart since it's encourage in people who have had heart attacks. It's a great stress buster, too! I just wear a lot of layers of clothing in extremely cold weather and take off with my dog.

[Birdbomb]

It sounds like you're trying every possible avenue. My thoughts were that maybe a pacemaker and VNS could act in conjunction to regulate both your heart and brain waves, especially during a seizure.

No, no, no, no, no, no! VNS does NOT act as a pacemaker nor does it regulate brain waves. VNS should be used only as a "last choice" avenue of treatment after all others have been exhausted.

The only way to find out your cardiac issues is to do the testing. There can be so many different reasons why you are having these problems.


! The safety and efficacy of this therapy have not been systematically
established for uses not covered in the “Intended Use / Indications” section of
this manual or in patients with the following conditions:
♦ Cardiac arrhythmias or other abnormalities
♦ History of dysautonomias
♦ History of previous therapeutic brain surgery
♦ History of respiratory diseases or disorders, including dyspnea and asthma
♦ History of ulcers (gastric, duodenal, or other)
♦ History of vasovagal syncope
♦ Neurological diseases other than epilepsy
♦ Only one vagus nerve
♦ Other concurrent forms of brain stimulation
♦ Pre-existing hoarseness
♦ Pregnancy or nursing

[Bee91]

I don't know if I'd be a candidate for a VNS anyway since they can't find a focus...

[Birdbomb]

Don't need a focus for VNS. You need a focus for the DBS and besides, you are way too new to this to even be thinking about any surgical proceedures. If anti-epileptic drug's can get you under control then there is nothing left to worry about. If not then seek out all the other options first.

Too many people jump at surgery too soon. The knife isn't a cure-all or fix-all.

[Bee91]

Don't need a focus for VNS. You need a focus for the DBS and besides, you are way too new to this to even be thinking about any surgical proceedures. If anti-epileptic drug's can get you under control then there is nothing left to worry about. If not then seek out all the other options first.

Too many people jump at surgery too soon. The knife isn't a cure-all or fix-all.

Thank you so much for saying that! I'm a creep and have strange phobias about surgeries anyway...I think I would rather have the seizures.

[RobinN]

I think I would rather have the seizures.

Rebecca agrees with you 100%

[Bee91]

Rebecca agrees with you 100%

yeah! have you seen those shows where they leave medical supplies in people?! Crazy stuff!
Or what about when the anasthetics doesnt work and you are asleep but you can feel what they are doing but you can't tell them cos you are paralysed... apparently I need to stop watching all of those medical shows...Because even though it happens to 1 in a million people....with my luck, I will be that one...

[brain]

One general rule is we must not let
desperation move in us to a point
where we make hasty moves; because
that's where emotions tends to take
over our rational decision thinking and
as well as rash mistakes!

We all here have or had made this mistake
before in our lives at one point or another,
and anyone here who states or reports
that they've never done that; I would have
to document them as a "Liar", I'm sorry.

Because even I've been guilty of that.