I cannot ever be on time. I have no idea how long I have (or have not) been doing things. I wake up at 11 PM, I just cannot figure out how to remedy this..it is since I got POTS...maybe due to concentration issues. It is so out of of contol, I am so tired, and was up all nite writing this now at 5 20 AM. Any suggestions/ I started setting the alarms on my cell. It minimially helps. I need help getting out of bed. I can sleep for two to three days straight. Does anyone experience this? if so, can u share here or by PM. I am so frustrated! tried eveything to reset my bpdy clock, and it doesnt work. I can sleep on 100 mg of adderall combined with provigil. I also thhink I have lost many of my aspirations, cuz I cannot concente. So much for my doctoral degree. I want to enjoy life smd not be a deadbeat. Plese let me knoe if this is seen in POTS and what to do to help myself..Thanks, ndrf wonderful people. Sorry for typos...am half asleep/\.P;ease help me or tell me of it is unrelated. I think I am the most tired persom I knoe and I like to have fun@

Yes, I too have this problem--mostly because I can't sleep for more than 3 hours then I wake up--shaking--sick--short of breath--skin burning--pain --a whole lo-ong list of symptoms that usu include high pulse nad low BP as the ONLY thing anyone could put a finger on diagnostically. (used to be I slept 12 hours with NO problems!) Am now on Beta blockers and now the BP thing is better--tho it's tending to run a bit high now.

But STILL the symptoms continue. After 2 years of this I have days the fight to get out of bed. Times it just too hard and it takes hours to make it out. Other times the sheets are so sweaty I just HAVE to get out.

I'm tired--and just want it to STOP! I just want to find a doctor who BELIEVES me and who won't stop til he finds it and makes it ALL go away. Nice dream, eh? <grins> Ok, maybe, but it's what gets me thru another day--or is it night--LOL I Never know!!!

Mostly they just want to put me on some sort of happy pill and pretend I'm nuts. I keep going for tests--most of them normal--the ones that aren't I can rarely tolerate the treatment for--osteoporosismeds ,cholestorol meds, kidney stone meds, vitamin D defeciency (I finally cured that one with sun), GERD (I got that one with apple cider vinegar) and now even some antibiotics all make it WORSE! So I'm always calling them back saying I can't take this--or that--'cause I pass out, throw up, my throat swells shut, I spike a fever--or something happens with almost EVERY new med they try--making doctors who are willing to see me run from me after a few visits. MVP can NOT cause all of this!

Why do I keep on trying? Because I don't know anything else to do but that. I believe that if all of us hang together and keep sharing info--we will--somehow--get to the bottom of this and we'll ALL find the answers for not only oursleves--but for those who will follow.

GAWD!!!
Did I get off subject here or what???

Again,lack of sleep and non-stop jitters for two years will do that to ya!

Back on topic--I think the constant illness --and in my case high adrenaline speeded up nind/body--takes a toll on lots of things--including day/night clock and sense of time. You'll notice that I too am up at 5AM--have been up since 4AM--didn't go to sleep til after midnight. A great night for me--I got almost 4 hours of sleep (No I do NOT nap--then I get 2 hours of sleep at night)

All I can say is I'm trying to help me and YOU find the answers. I have a tilt table test and sleep study in the next two weeks--then I am--somehow--going to get a doctor somewhere to fill out the refferral papers to get me in to see a doc in Pennsacola Fl who actually HAS dysautonomia and will see a few of us.

How will I make the trip without crashing? I have no clue? How will I even get someone to refer me? I have no clue.

But BET ON IT I WILL find a way!!!

He is stable enough to work--at least part-time--I'm going to find out how!!!

I WILL post what I find out here.

MAYBE it will help someone else. Or, maybe someone else will go to a doc and find something that will help me.

In short, the way I see this g'friend is we MUST all hang together or we will continue to be hung by this thing separately--and all alone.

I AM a smart, well-educated, strong-willed person. (Say this three times in the mirror and maybe it'll sink in??? <chuckles)

I will NOT be the one who fails to do my part. I WILL keep trying 'til I or one of the other people on this group finds the answer for us all.

Why?
Because I'm better than this illness --I deserve to feel good again--and I will NOT let it win!!!

LOL but that's today!
Tomorrow I may be all about taking a stroll to look for a high bridge over low water. <chuckles>

But today I'm going to make it--bet on me! Just like I'm betting on you too!

When the going gets too tuff email me at cbeachinn@aol.com and I'll either call you or give you my phone number. We'll talk--we'll b#tch--we'll laugh--and we'll find what we need from each other to keep going for another day.

Because tomorrow may be the day they find the answers and I want to be there to throw the wildest party EVER!!!

Sorry, I really rambled here.

But, in short, I care, I feel your pain, and I hope to one day be able to say something more that just that.

This message has been edited. Last edited by: Sandy Sims,

i loose my sense of time and depth perception.
i have noticed lately (cuz i have been doing this lately) that the later i go to bed, the earlier i am up.
i.e.- i finally went to bed at 10:30 last night (i was up at 6am that day), and this morning i was up at 5:15am. but the earlier i go to sleep the later i wake up.
don't know if that helps.

sandra - you have issues with depth perception too? at mayo they tested my peripheral vision and there were a couple anomolies but mostly ok. but on my bad days, i don't drive because of my depth perception - it is scary because i think the cars in the other lanes are in my lane and i freak when i have to drive between cars....but i am in my lane.

it scares me too sometimes. but i still do it. if it's real bad, i won't. but i try to remind my myself that more than likely it's the dys and i am ok and in my own lane. i am worst at coming up on cars and the stopping (which i know that i am) so i start stopping earlier. i also do not turn until i can no longer see cars, just to be safe.
i still have my peripheral vision, at least most of the time.

OMG!
Ever have a "light bulb" moment?

This just happened to me last week when I walked out of a dark movie into the sun. I could see--but had no depth perception and feared I'd fall at any minute! Everything was wa-aaaay too bright--and my perception of EVERYTHING suddenly just went flat. It was not that I couldn't see--tho I had no other way to describe it--it was that I couldn't interpret what I saw and felt blind. My poor hubby's hand had claw prints in it where I held on to be led to the car.

Thanks SO MUCH guys for posting this!!!!

You have NO IDEA what a relief it is to hear I'm not the only person in the world who has ever experienced this!!! I came home and took an elavil--convinced I was losing my mind!!!

This group is --your people are--for sure--keeping me from going COMPLETELY off my rocker!

THANK YOU!!!!

quote:

I have a tilt table test and sleep study in the next two weeks--then I am--somehow--going to get a doctor somewhere to fill out the refferral papers to get me in to see a doc in Pennsacola Fl who actually HAS dysautonomia and will see a few of us.

Sandy,
I have no idea if I messed up your quote but I want you to know that seeing Dr. Thompson in Pensacola is a Godsend (I'm so blessed to live here and in fact just moved into a cheaper place 5 mins from his office - cheaper because I'm filing for disability at the end of this year - still working LOL!). It's is HARD. My experience is that Thompson's helped me tremendously with several medications (and I used to not be able to take ANYTHING - but we always start with teensy doses and usually pretty much stay there). But until they do more research (and I guess it depends on how long you've gone w/o a diagnosis and proper treatment - for me it was 10 years), it don't get much better than this. I do sleep though - finally. And that feeling that every nerve in your body is going to explode - that's gone too. And I only get the shakes when I overdo it, which at this point is too much as I'm still adjusting to the reality that I just ain't who I used to be or who I ever thought I'd become. But I'm starting to see it - even disability - as a possible blessing. That's a long story/journey, but the best thing is knowing people who have the same problem because YOU AIN'T CRAZY and don't let anyone say you are!

Surviving in P'cola. Pray for no hurricanes!

Thank you SO MUCH for writing this.

We ALL need to hear that we CAN get better.

Is IS going to be very difficult for me to get to Pennsacola to see this Doctor--a two day road trip.

But I WILL find a way--and just hope that I can get these confused/often unhelpful docs here to send enough info so he will take my case. Because I am 4 real d#mmit!

I've seen SOOO many doctors--some of them who have dumped me like I was nuts--most of whom just shrug and don't have a clue. Few of them with ANY answers.

I for sure sure DO need his help.

If it has to be, I'll crawl on my knees to him and beg.

I WANT MY LIFE BACK!!!!

sandy sims,
your body might regret the two day trip to see dr. thompson, but you won't regret it. he is wonderful. i am thakful i live here and am able to see him. if they could all be like him.

Nesh,
The only way to have the best quality of life with dysautonomia is to go slow and easy and to pace yourself. As long as we have been corresponding you have pushed yourself way to hard. My doctor constantly reminds me to go easy. I find if there is something I really want to do one day then the next day is a down day. That's just the way life is now, and my medical problems are not as extensive as your.

However, now I am being checked for adrenal problems also so who knows what they will find next. There never seems to be an end to something going wrong.

You told me last spring you were going to take the summer off and find a good doctor to help with the parathyroid problem. From you talk here it doesn't look like you have done that yet.

I still think of you often and wish I had a magic wand to wave to help you feel better. Enjoy the NOW and get thee to a good endocrinologist.

Hugs, Elsa

Thanks again for the info on Dr. T.

My ONLY fear is not being able to give him what he needs to take me as a patient--being as the endo who diagnosed me also dumped me. My remaining GP hasn't a clue. My cardio doc gets it--sort of--but thinks there's "nothing to be done for it."

Cross your fingers for me that the tilt table monday will come back with something more I can send to Dr .T that will convince him to see me.

At this point all I have is the results from one 24 hour urine showing high Ne levels and the word of one doc who saw my high pulse/low BP problems X6 in his office and said I have it--then dumped me when my forever med reaction troubles became too much trouble to deal with.

My biggest issue right now is fear of NOT getting an appt with Dr. T. since the ONLY doctor still willing to handle the stuff needed to refer me hasn't got a clue what dys even is!!!

If ANY of you who are patients of his have ANY string you can pull to get me an appt--I'd --well--kiss your feet and put you in my will!!!!! <down on knees begging>

Neshema, omg I completely understand. I feel the same way. My days pass me by and I don't know how or where they go. I can wake up and it will be 5pm. I really don't sleep through the night even though I'm tired. My days are a blurr of waking up, falling asleep, looking around, realizing that I'm waking up again. My body has no respect for time. By the time I am feeling stable enough to do something stores are shutting down and people are getting ready to go to sleep. *sigh* I feel like a bum...sometimes I worry that my b/f is going to say something like "if you would go to bed at night maybe you'd be more productive in the day" luckily he hasn't said that yet.

I'm tired of being tired but I do have hope that something will be able to help us all. I realize that I can't concentrate as well as I could. I even refrain from driving now because my mind will completely wander away as if I'm not behind the wheel!! That is so scary.

And yes Sandy I have "light bulb" moments. Lol. I just squint and blink waiting for things to re-adjust and come back to normal. Good luck with seeing the doctor.

sandy,
my advise to you and all others who cannot get a referral is to get mad. you pay for it not the docs so if you want one DEMAND. i have done this several times. everything is relative to money.
just look him dead in the eyes and quote me "I PAY FOR MY OWN INSURANCE NOT YOU AND I WANT THIS TEST DONE. IF IT COMES BACK NORMAL THE ONLY PERSON IT COSTS IS ME. NOW GIVE ME THE DAMN RX FOR THE TEST."

i am telling you i have been looked over, told i was nuts(which i am), i was doing it on purpose, and so many other horrible things. but money was my common ground with the docs. and i did get somethings ruled out that way.
YOU ARE YOUR OWN ADVOCATE!!!!!
not trying to yell, just get my point across.

Nesh,

I'm dead tired all the time. Last time I had a few hours of real energy was last January. I felt light on my feet and well balanced and alert and this lasted for about 3 hours. Now I just struggle through all the time -- sometimes worse than others.

I have to sit down regularly -- every ten to fifteen minutes or so and get my feet up to or I end up very potsy.

I'm noticing a lot more brain fog. I often lose track of time -- hours will pass and suddenly I will realize it. On the other end of the scale, it will feel like a long time has passed and I will find it has been only a couple of minutes.

At the moment I really need 10 hours sleep to keep myself going but the down side of getting this much sleep is an increase in severity of my migraine when I wake up.

Last year I was existing off an average of 3 hours sleep a night -- a lot of the time just getting two hours sleep -- and I was 'speeding,' physically and mentally. I suspect this was medication I was on for migraine prevention. An old tricylic anti-depressant.

I too have a problem with being late. I'm at the point that if an appointment is at, say, Ipm I pretend it's at noon and then I manage to get there on time.

It takes me hours to get ready to leave the house when I go out and preparations are already started the night before -- what to wear, meds I need to carry with me, what I need to take with me. I even plan what light thing I'm going to eat for breakfast (which I have usually at about 10 am now). I try not to leave the house before noon otherwise the day is usually a disaster, cut short and I have to come home almost as soon as I get where I'm going.

I have been obsessing over being late and only a couple of days ago I got a 'glimpse'. I use the 'death bed analogy' a lot. Will I really wish I had been on time all the time when i'm lying on my deathbed. I use this for all sorts of things, ie housework, will I really wish I'd done more housework on my deathbed. Hardly. LOL.

The world does not come to an end when I'm late. And I think stressing over the prospect of being late does us harm. I think all stress does us harm. For a person with dysautonomia I'm not sure there is such a good thing as 'good stress.'

I'm so tired I'm trying to stick to the point and make sense. Only the harder I try to worse I get. I guess, for me, it's about learning to let go of having to control stuff. Easier said then done but I'm getting better at it. I've learned I really have very little control over the world around me. But I'm still trying to deal with the stress of this realization.

Oh, and I lose things all the time. A few weeks ago (or maybe it was months -- it's always a rough guess now when I try to remember when I did what in the past) I lost my epi-pen while out. I had to see my general doc to get a new script for one and he started to lecture me on losing things. Like I am careless or something. I reminded him I had POTS and I just now accept the fact that I lose things and that believe me, that before I accepted that, losing things gave me the ****s more than my losing things would ever give him.

Sandra's right. We pay for this health care. And the way i see it, I hve POTS and many symptoms and damned if one of my symptoms is going to make a doctor sh*tty with me. I feel like yelling "I can't help it, dummy." sometimes. Maybe one day I will.

My family give me a hard time for forgetting things, losing things and being slow. I just let it go over my head now and ignore them. I can't have POTS and be well. I dont' just have a name of an illness. I have the illness as well. And I'm always astounded at how people seem not to GET that.



And here ends my suspect senslessness for today. I guess the big question for me is 'where has my brain gone?'

ROFLOLPOS!

Thanks for that one--I needed that laugh today!!!

EXCELLENT!

quote:

And here ends my suspect senslessness for today. I guess the big question for me is 'where has my brain gone?'