updating, in a pretty bad crash-very long, so much going on!

[Guest guest]

hi guys,

I am in probably one of the worst crashes I ever have had. After the conference

in early August I just felt so exausted and couldnt get myself back to my old

pace I guess. I think it had to do something with having to see a new ENT who

deals with dizzniness and hereditary hearing loss in the late morning, then

physical therapy that afternoon and a sleep study that night- the day after

(monday-tues?) getting back then having a tilt table test few days after that

(wednesday?). I think I did give yall an update sometime alittle after than

about them putting me back on florinef and dx'ing POTS and also putting me on

salt tabs and some other things to help (compression stockings, etc). I felt

awful the rest of the week. The tilt table they did at least use find that using

the tilt before fluids and after fluids that I had a great improvement with

symptoms and blood pressure and heart rate changes (my BP didnt drop too low and

I wasnt as tachycardic). But they told me to try for oral fluids and the salt

tabs and florinef first befor IV fluids or anything else is used. Well, the salt

tabs made me worse off but they pushed me to use them for 2 wks. I know the next

week (mid-august?) I was supposed to do PT twice that week and get an evaluation

for an electric wheelchair through a vendor to try to find the best one for me.

I also had a appt set up with a new neuro who was the chief of the dept and

supposed to be highly recommended for several of my neuro probs (my mito dr

wants me to have someone to help with my seizures, migraines, etc). Well, This

dr is where most my other drs are and we waited in traffic for hrs and waited

for this appt for 2 months at least when my mito dr wanted me to be seen sooner.

well, come to find out, this dr was leaving the hospital at the end of august

and his secretary was supposed to contact all new patients to let them know and

set up appts with other drs. Well, I did end up seeing him since I did need to

see a neuro about my increase in seizures, stroke like episodes, migraines, etc.

He did take a detailed history and didnt know much about mito but was willing to

try to put me on another seizure med and set me up with their best seizure dr

supposively. So I got an appt with him in early Oct. Anyways, that was

frustrating, I got very sick that week also due to PT and several people I knew

had infections, I ended up getting a sinus infection and started to crash so

cancelled my WC evaluation and rescheduled it. Well, I got fitted for the

compression stockings that weekend but I ended up getting even sicker so I didnt

wear them because I was always laying down- I almost always have urinary

symptoms due to autonomic probs and neurogenic bladder but this also makes me

suceptable to UTI's, but sometimes I dont know when its a UTI or not, but

usually I get the UTIs with other infections. Then the 3rd week of august I

continued with PT and it made me even worse, we decided it was time to quit and

just do minor exercizes at home. I also saw a new GI dr who decided that he felt

right now that my main GI probs are lower GI with bowel dysmotility- my colon is

really bad off and he wants to do a colonoscopy then since that will clean me

out supposively he wants to try me on miralax and zelnorm again even though I

had probs with them in the past he said we'd do something different this time?

He sent up a colonoscopy to rather quickly cuz he was very worried so I had it

set up for the upcoming Monday, then he also had me set up for a small bowel

series to check for dilation and other things that could cause serious issues.

But that weekend (august 29?) I began to have what seemed to be grand mal

seizures (my mom and the EMTs counted 17 of them!), alot of autonomic symptoms,

deydration probs, more respiratory infection issues and then they found the UTI

because my mom called 911 with the 'seizures'. well, unfortunately- the dr

talked to my mito dr (dr gropman) and got mixed up and put me on cipro which is

bad for people with seizures, she told him this but he misunderstood this and

though she wanted me on this. I ended up rescheduling my GI tests. Anyways, that

week I continued to do worse. I saw a new pain management specialist because the

drs want to try to see other options other than narcotics (which I take) well,

I've tried most of the other options, he is putting me on a new antidepressant

that is supposed to be great for pain though and he suggested IV lidocaine until

I learned its bad for autonomic dysfunction. Then, the next day (sept 2 or 3?),

I end up having a more seizures and also a moderate SLE. Well, I ended up going

to the hospital where dr gropman was at instead of my local one since the local

one messed up. Unfortunately the one that Dr. Gropman is at also gave me probs,

they didnt understand my need for fluids and alot of other things, they wanted

me to leave and had me leave the room, my mom said we would leave until I got

more fluids, finally got ahold of Dr. Gropman and she told them I needed fluids

with D5 1000cc I think(they had before just given me normal saline 500cc), well,

sure enough I did feel alot better after that and they were very suprised. Also,

at least at my local hospital they did a CT scan at town, even though I

was having the stroke symptoms they suggested a MRI/MRA but said to do it

outpatient, then they also set up a 4 day stay video EEG starting sept 13. They

wanted me to schedule the MRI before this- I didnt get why they couldnt do it

when I was symptomatic and there at the ER. Anyways, luckily the next week I had

no appts like I had been having. And luckily I also found out my UTI I no longer

had so didnt have to switch meds- I think I read allison was also going through

alot of UTIs too- I think I seem to get them once a month usually, my drs said

I've had around 5 or 6 this yr at least. And I might have another one now, they

arent sure, will explain that in a minute. Anyways, I continued to go downhill

waiting to go into the hospital, wishing they would just admit me sooner. Seems

everything was just getting worse, seizures, autonomic symptoms (low BP- a good

day it would be up to 72/48. My pulse would go up and down from the 40's to the

140's. severe dizziness, headaches/migraines, blood pooling to my legs, not

enough going to my brain, etc.) GI symptoms alot worse- constipation bad- only

going 3-4 times a month if that and get spells of severe diahrrea also for 2-3

days 1-2 times a month when autonomic system is bad, makes dehydration worse of

course, severe abdominal pain/bloating, nausea, reflux, swallowing, etc, barely

eating anymore (1-2 small meals- usually ensure/shake and/or other things easy

to eat). My cardio says that the reason I am not really losing weight is due to

mito actually, that my metabolic rate is all out of wack from it (at 25 now I

weigh between 145 and 155 lbs depending on bloating and fluid loss, etc, over

past 10 yrs, GI symptoms started around age 16, but werent bad till 18-19, I

weighed around 110 lbs till I was 20 when they put me on high dose steroids for

suspected lupus- then I gained weight fast, went up to 170-180 lbs till I was

age 23 and GI probs got severe, gastroparesis, etc made me go from 170 to 130's

in 6 months, then stayed that weight for awhile and my gi probs got a bit better

started eating normal and gained weight fast, bloated, etc, gained 10-15 lbs,

but now back to barely eating but not losing, so alot of drs dont think GI probs

are as severe as they are- hoping this new GI dr believes it, I do know he

thinks my lower GI is bad but my last swallow study was normal so I dont know

what he thinks- he said that my swallowing issues and stomach probs might be

from lower GI issues mainly. But gastric emptying studies show gastroparesis

pretty bad. Anyways, sorry, just went off on that. back to what I was saying. I

was going to go into the hospital the 13th but didnt till the 14th due to severe

diahrrea which I usually only get few times a year. I had it from that Saturday

night to Tuesday morning. Morning dehydration issues. Well, I was admitted on

that tuesday the 14th. I wasnt doing well, BP was extremely low, very dizzy, lot

of pain and GI symptoms, ended up having what I though was either 2 myoclonic or

partial seizures on Wednesday morning. Was put on some IV fluids for a bit. They

were slowly taking me off all but one of my seizure meds (was on 3) and was

keeping me on a low dose of that one. Well, my cardiologist who is located at a

different hospital knew I wasnt doing well and he contacted a collegue of his

that worked there to see if she would see me as an in patient consult and she

would. well, the neuro resident was very iffy about this- he wasnt sure if I

needed a cardio consult. My mom somehow got my cardio's nurse to talk to him or

something and it all was worked out. I saw the cardio and she was great, she

told me that my cardio felt that it was time for me to get a port put in because

I was having way too many problems with autonomic dysfunction, low blood volume,

dehydration, etc. She also agreed that the salt tablets werent worth the side

effects (the neuro resident told me to take them even if they had side effects)

and she said she and my cardio wanted to up my florinef dose. They also were

wondering if some of these seizures might actually be from lack of blood to the

brain or something similar. Anyways, if I hadnt seen her, I think that hospital

stay would of been useless because the rest of the stay was stessful. The night

before I had very little sleep because of pain and they had been so unhelpful

with giving me meds for nausea and pain and I couldnt take my own. Anyways,

Also, unfortunately I had appts set up that week for the wheelchair eval and for

a new gyno appt (have been having gyno probs too) and couldnt make either but

those can wait I think. Well, the last 2 days of the stay were stessful as I

said. Thursday I continued to feel awful, I got a migraine and they somehow lost

my migraine medication (I cant take most meds used for migraines and the one I

use isnt used often and they had to take mine to the pharmacist, etc and somehow

it was lost). Anyways, I spent the whole day in a migraine basically. Then in

the evening I told them I needed pain meds through IV because it was just so

severe and I was nauseous- well, the dr on call said she would give me zofran IV

and to let it work then to take my MSIR in pills 30 mins or so later, that I

could deal with the pain! Well, the nurse didnt like that luckily and so she

called the chief or something and the chief called the dr on call, well after an

hour of all this, i finally got my IV pain meds. Also, they had asked for a

family member who was familiar with the seizures to stay if possible, well, my

mom is really my only family member familiar at all with my seizures- she knows

I have staring spells and tics of the limbs (myoclonic) and partials (various-

some she can tell some she doesnt know about) and of course the petite mal where

i just stare off. But then there are these new ones, the grand mal looking ones

which just had happened like well, she had only seen then in the 2 clusters

before this hospital stay and then i have had like a handful of grand mal

usually a reaction to meds, etc. Anyways, I knew my mom was very stressed out

with all this and she stayed the whole time with me except when she went out to

get something to eat or when she went out to make calls on her cell phone but

only to call my brother who is basically having alot of emotional issues (he

seems to be having rapid cycling with bipolar now and now anxiety attacks, new

issues and he is relying way too much on my mom and seems to think she is paying

too much attention to me, etc) then my grandma (maternal) has some form of

dementia that seems to be alot like altiezmers- it seems progressive and shes

just recently had an episode of violence and atypical behavior and was put in a

mental hospital temporarily. So my mom is dealing with alot and my dad has never

dealt with stress well, he backs away and hes been going on business trips alot

too, so I just dont know what to do for my mom, I'm worried for her health too

because she has issues with dysautonomia (blood pressure can be low and heart

rate high, temp regulation probs, sweating issues, especially when standing

still, heart palps, GI problems, cognitive probs, etc) then she also has some

fatigue and pain issues and mild weakness due to exercize intolerance. She just

needs to learn to take care of herself in some ways too. She does want to get

herself and my brother checked for mito once my sequencing is done and if they

find a specific mutation with my complex defects since both of them have

symptoms. anyways, thats another thing i got to talk to dr gropman about. well,

back to everything going on. Thursday staying at the hospital- it so seems that

most my friends no longer understand my issues and why i rarely go out now. I've

got one one close friend i see like twice a month and then 1 or 2 others that i

see every month or 2. Then the rest are people like you all. Dont know what I'd

do w/o you guys. Anyways, the one good friend I have that I do see a couple

times a month usually planned on seeing me the thursday night at the hospital

about an hour before visiting hrs ended (she works about 20 mins away from the

hospital and got off work around 6pm- visiting hrs were over by 830pm). She said

she would be out of work at the lastest by 630 and the lastest she would get

there if traffic was bad would be 730 so i could visit with her for an hour

which would of been great cuz i hadnt seen her for about a month. I also felt my

mom needed a break and she could of taken one so my friend could of been there

to watch me for an hour too. Anyways, I waited and waited and this was at the

same time I had the probs with getting pain meds (i asked for them at 6pm or so

and didnt get them till 745 i think). Anyways, I finally checked my voicemail

around 830 once I knew she wasnt coming and she had left a message alittle

before 8pm from her bf's house appologizing saying that she ended up having to

work 30 mins later and then she couldnt call me cuz her phone didnt work up

there to see if it was ok to come and visit me late (though I told her it was ok

as long as we got to visit for 30 mins, so it was ok as long as she came before

8, which she would of). She also said on the message that she had me flowers and

a card and she just would have to get them to me later. I think she felt bad cuz

she learned that my neighbors (4 of my neighbors) gave me cards, flowers,

pumpkin bread, and some other stuff and one of them is this girl we both used to

be friends with in HS but we lost touch with her once she went to college in FL

and she just moved back early this yr and she has epilepsy and seems really

understanding and I think my friend is worried that I might start hanging out

with this girl more or something, but I'm wondering, maybe I should because my

friend has made me feel guilty about alot- she made me feel like I shouldnt be

using a wheelchair- said there are others out there in more need than me (though

she doesnt know a thing about mito really) and also alot of the other things

that have been suggested that are big changes, she seems against and when I have

to cancel alot on her at the last moment, she doesnt seem to understand enough.

She seemed to also say that maybe my low BP was from liver disease- I told her

she needs to understand my disorders more before she comes to conclusions like

that and she got mad I think, anyways, enough complaining abou her, its just,

ive been friends with her for 11 yrs now and when we do go out either just over

to her house to watch a rented movie or out to a restaurant or somewhere like

that with another friend or 2, its just nice to get out and to forget about

medical stuff for a bit usually. I was just upset and felt like she didnt intend

on visiting me in the fist place, but maybe shes telling the truth, who knows.

Anyways, Thursday night, they made me go w/o sleep to try and induce a seizure,

they also took me off fluids because the cardio had me on them from 6am-10pm i

think. Well, I did ok at first w/o sleep, but around 2 or so I because to feel

sick, nauseous and such, then around 4 I began to feel really dizzy and weak, I

began to have the seizure like events, I dont remember them really but

supposively they look like grand mals with convulsing (rigid and shaking of

whole body), loss of consciousness most the time, turned blue during some of it,

nonresponsive, eyes rolled back, raspy breathing, biting tongue, but i didnt

lose control of my bladder or bowel- that was like the only thing that didnt

fit, everything else was. these went off and on for like 1-2 hrs, then they

finally stopped, they decided to also used the flashing light, at first that did

nothing but then it started them again, but not as severe, i was semi conscious

during some of them and more resposnsive quicker. Anyways, They finally decided

that was enough, since Im allergic to benzos (they make seizures worse) they

couldnt really do more than put me back on fluids- after those events i was in

severe pain (migraine mainly) they gave me phenergan and dilaudid, i passed out,

so did my mom cuz she stayed up with me the whole night. we slept like 2 hrs at

most. well, the main neuro (not the resident but the epilepsy dr that i had

barely seen- he had just checked in on me through my stay 2 times, talking to me

5 mins each times at most). Well, I was so out of it cuz of the meds and he woke

my mom up and supposively told her that the EEGs were normal and that I didnt

have seizures. He called them pseudoseizures, said they were most likely due to

psychiatric probs (since i take lexapro for anxiety i guess he thought that?).

Well, she didnt understand what he meant really and he didnt really want to stay

in there and talk about it, he had woken her up from sleep and told her w/o

letting her wake up enough- he told her in 3 mins explained what they were but

didnt even say that they could be other things (cardiac events, etc). He said he

wanted me off my seizure meds and didnt want to see me again. He didnt want to

see my previous EEGs that were abnormal (3 were, including one that was a long

term video EEG that showed epilepsy). He just didnt seemed to care. I'm going to

make a complaint about this dr to the patient adovocacy board. Anyways, the

resident came by to see us and asked if we had any questions and said that the

dr was taking me off the topamax and zonegran and leaving me on a low dose of

keppra but didnt explain why. well, I said that I wanted off topamax due to side

effects but that I didnt want to go off zonegran because it helps with alot

(seizures, migraines, etc) so he said he'd keep me on it but for migraines but

they upped the dose to 300mgs twice a day, usually if its for migraines its a

lower dose and he said to go off keppra, well, dr gropman said to continue on

the dose im on till my appt with her Oct. 6th when we discuss it more. It seems

that these recent episodes might not be grand mal seizures or epilepsy related

but might actually be whats called convulsive syncope (seizures with fainting)

which is due to the hypotention with the autonomic issues- not enough blood

flow/O2 to the brain. But this could be just as dangerous they feel and might be

at risk for other things, stroke, etc? Anyways, now my cardio is putting a picc

line in on Wednesday cuz I've been in the ER 2 times this wk due to dehydration

and autonomic probs, hes also putting in an internal heart monitor. I will keep

yall updated with all this, but I will go into the hospital on wednesday and

stay in at least overnight, maybe 2 nights and then be getting a home health

nurse. They will be giving me fluids with D5, and also possibly getting

zofran/phenergan when needed, pain meds maybe, carnitor (gotta talk to dr

gropman bout that), dont know what else could be given, those with ports what do

you get in them? TPN has also been mentioned, dr gropman wants to talk about

that in this upcoming appt. She also wants me to make an appt with my GI and a

uro (there is this neurourologist at georgetown) then there is this other neuro

possibly worth seeing that deals with seizure disorders, movement disorders,

neuromuscular disorders, behavioral neurology, etc. I also saw my new pulmo

recently but thats another story, ive said enough for now, my pulm probs are on

the back burner for now, they just wanna do exercize testing, i will talk about

those later. if anyone wants to contact me i also have a new email address at

moonchild62579@...

I check that more than this one-feel free to email me privately also, I need to

change the digest over to that soon, but just havent been able to, anyways, im

not sure if i will be online much with how ive been feeling, but i do keep in

touch with malisa- i know shes out of town hopefully finding out about her skin

biopsy and all! ill keep her updated though if i cant on here. yall are in my

thoughts though!

take care,

Adrienne