response to topics on SLEs/TIAS/seizures etc, and also sleep apnea/studies

[Guest guest]

Just thought I'd put my bit in on these 2 topics. First on the

SLE/TIA/seizure topic. I have been diagnosed with all of these and

other things related (diagnosises, went from migraines to complex

migraines to hemiplegic migraines or TIAS then adding complex partial

seizures and other types of seizures. Then once I finally got the

diagnosis of mito, they called alot of the stroke symptoms I've had

SLEs.

My view on this and what I have learned- there is just the

noncomplicated migraine then sometimes complex migraines that just

have mild numbnesss and other atypical migraine symptoms. Then you

have the stroke like episodes where you might have migraine with or

just have the SLE alone which usually consist of one sided

weakneess/tingling/numbess, drooping lid with double vision and other

visual disturbances, slurred speech and cognitive issues. These

episodes will usually resolve on their own within a few hrs or days.

These are supposively either caused by a metabolic change somehow

causing problems cellular and causing an eneregy crisis temporarily

in the brain cells or with some- dysatuonomia plays a part I believe

and can make it so that there isnt enough blood and/or oxygen to the

brain.

Then with TIAs not much different except the cause it seems, with

what TIA stands for (transcient ischmenic attack) seems to be similar

to what i desrcibed about from the dysatuonomia, but usually the

reason it happened is different. My drs have thought most of my

episodes have been SLEs but they have gone back and forth on 2-3 of

my episodes that have left mild-moderate permanent side effects- some

drs debate whether those were TIAs or mild strokes and not just

SLEs.

Anyways, then I also have the complex partial seizures (atlered

awareness, shaking on one side, inability to respond) and sometimes

these generalize into full blown seizures. I also have the absense

ones with just staring spells and myoclonic jerks.

One other thing my drs have suggested is CONVULSIVE SYNCOPE. I

capped that because I felt it might be of interest. My EEGs are

normal during this and it has other aytpical presentations. My drs

feel that these are also related to dysautonomia- causing me to faint

and then my body to convulse- most likely due to the lack of blood to

the brain, etc. When this is giving me problems, IV fluids, rest, etc

is all that seems to help. I think thats about all I can add on these

episodes.

The only other thing I wanted to comment on was the whole sleep

apnea/sleep study test. I have had several sleep studies which have

showed numerous things including the sleep apnea, nocturnal seizures

and myoclonus (RLS, etc), and problems going into stage 3 and stage 4

sleep. The sleep apnea actually showed up with me yrs before I had

PFTs show that I had respiratory muscle weakness. I just recently

started using a BiPap (though it was recommended several yrs early-

now its for both the sleep apnea and respiratory muscle weakness).

I do think the sleep apnea is common in mito and has several

causes, whether its from muscle weakness in the throat and lungs or a

central reason or both (which seems to be the case for me and I know

several others too). I think a sleep study is a good thing to have

done yearly when you have mito, especially when you have sleep or

respiratory issues. Probably even if you dont really have then, nice

to have one as baseline to go on if you do start having problems in

that area or increase in them. I know the first time I had a sleep

study, they were just looking at everything possible in the study-

might be good to do that, just to make sure some of your symptoms

might not be from some underlying sleep problem you are unaware of.

Then just have your sleep/pulm. dr give recommendations for specifics

once he sees what the basic stuff shows.

Hope this has helped some of you out or at least gave you stuff

to think about. Oh, I'm leaving this afternoon myself for Atlanta,

probably will see those going tomorrow. Hope you all have safe trips

and all and those that arent going- hope you are doing as well as

possible.

take care,

Adrienne (age 26 from Virginia-Complex I, III, and IV defects,

MELAS/MIDS phenotype)