Update..on dizzygirl

[dizzygirl]

hi all..

thought i'd pop in and give you an update.. since my last post..

well i still have not slept..insomnia is the worst ever!!

I am so white and pale it isnt even funny..even my lips are white..

SO.. iwent to the doc this morning.. and she wrote me ascript for Lunesta.. I am praying that it helps me sleep..

between such bad insomnia and the very high tachycardia.. and am just purely exhausted..

she also increased my propranolol to 80mg 3x's day.. and hopefully this will help with the tachy..

i go see the tummy doc. tomorrow...so hopefully i can address those issues too.. and get back on track..

goodnews.. I was able to schedule an appointment to see Dr. grubb for the beginning of october... they squeezed me in.. sherry said that they are stiilll trying to reschedule appointments from November of last yr.. I thank god that I was am able to get into see him..I have been waiting a yr and half or so.. my apps. keep getting rescheduled.. understandably so..with every Dr. grubb was going through himself..

But when she told me she could get me in in oct. I was near tears.. of relief.. i have been going down hill now for a few months.. and am at aloss of where to go next.. and a few cardio docs have stepped back from my care and treatment because they them selves have exhausted everything that they could do..

I am curious..I have had POTs to some degree my whole life.. but became severe 3 -4 yrs ago..and I have tried so many different med. therapy's and the usual stuff for treating pots.. and i havent really gotten all that better.. and have gone down hill quite quckly in the past couple of months..

I am wondering if there isnt something else going on.. other then the pots..what that is I dont know..i experience alot of neurological sysmptoms.. and some of my testing on EEg's and MRi's have comeback abnormal.. but the dcos that I have seen wont step outside the box so to speak.. and look at different avenues..once they rule out the normal things.. they stop.. and make me feel as though I am a mental case..

But all 3 EEg's that I have had done in the lasst 1 1/2 have come back that I have slowed brain functioning.. but they dont know why.

i asked the doc.. if the fact that i loose total consiousness.. and the fact that during these times there is no oxygen going to the brain and what not.. if that could be casuing slowed brain functioning.. he actually was stumped at that question..and said that was out o his level of expetise.. what do you all think?

and in July my MRi of my head.. the pituitary gland.. showed "something" on the gland.. but the doc who ordered the test.. never looked further into it.. infact stopped treating me 2 weeks later.. this doc was suppose to reorder the MRi..and speak with some nuerologist.. in hopes to get a better look at the gland.. and try and figure out what it is on there.. cyst.. that kind of thing..

I feel that..whatever this is on my pituitary gland may very well be akey into some of the problems that I am having.. and can explain alot..

what do you all think?? Am I far fetching here?

Ok well I have had my mini rambling session...bye ..

dizzygirl

[Sunfish]

re: your specific thoughts/questions...i honestly don't know...i'm not aware of any of it but as i've said before, nothing much would surprise me, ya know?

congrats on perservering to get your appointment...

and good luck with the new med changes. if you haven't read my ramblings, i've been trying the lunesta myself...

hang in there,

melissa

[Rita]

Dizzy girl,

Sorry to hear that you have been feeling so bad. I have not been having insomnia, but my legs have been cramping ne something horrible at night lately. I have been sleeping with my legs weel above my head and this seems to help.

On your medical treatment have you ever thought about going in for a research patient. The docs there are most of the time wonderful and want to learn rather than be so fast to dismiss. You also have to look at the advantage you give to others who share our situations. Just a thought it's not always for everyone.

I hope you get to feeling better soon. And always look forward to reading your post. You are always so positive even when you feel your worst. I admire you for that.

Good luck,

Rita s

[Marie]

Dizzygirl - I have autonomic neuropathy, which can be causing your symptoms. They think I may have gotten a viral or bacterial infection that triggered my immune system to attack my autonomic nervous system. They are still looking for other causes. It can cause all of your symptoms. They are still trying to figure out if they can find the cause of the neuropathy, so they can treat the cause, which will in turn - hopefully-stop it or improve it. I am going to a cardiologist who is testing me for amyloidosis and endocrine problems. He said a tumor on the pituitary gland or adrenal glands can cause problems with the heart and blood vessels because it affects the amount of hormones produced by the pituitary gland and adrenal glands that can affect the heart. It sounds like you need them to revisit your pituitary gland. It took 6 years and four neurologists and many other doctors and tests to get my diagnosis - and they still aren't sure. I am sorry that you have to go through this. Best of luck to you-

Marie

[MightyMouse]

I think that it's important to remember that ANS issues don't make one immune to all the other possible medical issues out there. AND... if you have a questionable MRI of your pituitary, that's something that should probably be followed up on by you and your doctor(s). Pituitary issues can cause autonomic symptoms and is one of the things to be ruled out prior to making a POTS, NCS, etc. dx.

Nina

[dizzygirl]

Hi all..

I had an MRI of my putuitary gland done like2-3-4yrs ago and that one was good.. so the diagnosis of POTs/dysautonomia was made.. however the most recent Mri showed "something". and that was done in July 2005... and I have not had luck with follow up on it..

I do definately have POTs/dysautonomia...and some other health issues.. some realted to pots.. some not..

Rita.. would verderbilt.. or Mayo be were I look into a reasearch patient? I think that that would be very interesting to have done.. and look into..

I was checked for diabetic autonomic neuropathy in May...but only my feet and lower legs were checked.. and that was normal..

so I guess the search will continue... and hopefully will come up with some answers..

I thank you all for you support and input.. you gave me a few things to think about !

dizzygirl

[dizzygirl]

Oh yeah I also wanted to mention..

I took the lunesta tonight.. and fell asleep at about midnight and slept till 2;45am and woke up for a minute.. then fell back to sleep till 3:45... and when I woke up thenmy heart was pounding terribly.. and I was having back night sweats..

so I got up.. I am so relieved that I got atleast 4 hours sleep in a row!! and that horrible headache that i had been having.. from lack of sleep is gone... ALLRIGHT!!!!! YIPPPEE!!

so there are some little improvements on my first night of Lunesta.. and the best of all is I dont have any of those wacky side effects.. and dont feel all dopey or loopy from it..

thank god!!

allright folks have a wonderful day!