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BEE

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Posts posted by BEE

  1. Weird Visual Thingy

    in Dysautonomia Discussion

    Posted

    I have been diagnosed along iwth POTS complex migraines. In short I have alot fo visual disturbances I notice moreso while in light (sunlight) or lights in general. I have had the lightning sparks..vertical blinds(waving)..muddy water all of it I think.

    Could be due to DYS. but one never knows like the rest said eyes doc. can look behind the eyes and see if there is anything serious going on..also a NEURO. can determine it.

    They have never found anything substantial but remember that there are ALOT of parts of the body affected by autonomic dysfunction..eyes being one of them,

    Hang in there and I am sorry to hear you have to deal with this.

    B

  2. Aura's With Headaches

    in Dysautonomia Discussion

    Posted

    ICE on the back of the skull where it meets your neck...that usually has some kind of counteracting effect. I have used tht before. And other than that tylenol or motrin.

    I try and eat a chocolate bar(een though Is tay away from caffeine at all costs but when it gets that bad...

    Good luck with the specialist Jacquie....:P

    B

  7. Weak And Just Plain Annoyed..

    in Dysautonomia Discussion

    Posted

    Thanks all went to have some routine bloodwork done today and another chest X-RAY...I have had alot checked my doctor suggested another sleep study but I personally know that ihave been sleeping fine...a little tooo fine..he he.

    I did get two cold viruses within like two weeks of each other last month so that just may be it...although it seems at the beggining of this summer I got a cold and my period at the same time and gradually this fatigue got owrse after that..and I think the last two colds set it off.

    How odd to get two different viruses one right after another though.

    I cannot for the life of me keep upright for very long at all...and I can it is nt like I am so much as tired but fatigued instantlywithin two hours of waking..

    Thank you all for understanding and suggestions...I tried the B-12 all it did was give me palps as I amnot low on it...I wish it wouldve helped. Also get IV fluids as needed...got some last week helped for about a day.

    TIRED OF BEING TIRED...how weird.

    Hugs to all..

    belinda

  10. Weak And Just Plain Annoyed..

    in Dysautonomia Discussion

    Posted

    I hate to be a downer in fact I think I have done quite well for having pOTS now for a few years...I am typically the type of person to constantly push myself throughout symptoms no matter what..and do my best.

    In the last few months I have gone from functioning at a somewhat baseline deal to NO FUNCTION..concerning energy levels..I am exhausted by like 9:30 -10:00 a.m. and that is after only being up for like 2 hrs at most.

    I physically cannot keep myself upright to do anything lately without serious struggles...

    I am not depressed or anxious or anything like that..this has caused a downward spiral in my funcitoning.

    I think I posted before they are thinking mitochondrial but they aren't totally sure..medicare wont pay for bloodwork for it. and it is somewhere aound 2000.00

    noone is sure..All i know is there are no answers and I am struggling with this fatigue...talk about a downer...sorry girls and gents.

    I have researched left and right what could be causing such severe fatigue. I have been tested under the sun...EMG's and such were norm.

    Anyone have ideas?..I have also had thyroid checked about a million times..not that.Taking enzymes not working..its to the point that is is starting to really scare me.

    Thanks B

  15. Weak,dizzy And Feeling Exhausted

    in Dysautonomia Discussion

    Posted

    HEY DAYNA...YEAH SEEEMS i HAD SOME KIND OF PROGRESION IN THE LST FEW MONTHS..I HAVE DONE THE IV FLUIDS..SEEM TO HELP FOR A DAY OR SO.

    JUST ALWAYS EXHAUSTED..AND I CAN RELATE ON THE NOT BEING ABOE TO DO ANYTHING...UGH!

    IT FEELS LIKE MONO//DAILY...

    THANKS FOR YOUR RESPONSES AGAIN..

    GET IN TOUCH DAYNA..ITS BEEN A HWILE SINCE WE CHATTED IW AS WONDERING HOW YOU WERE DOING.

    B

  17. Weak,dizzy And Feeling Exhausted

    in Dysautonomia Discussion

    Posted

    Thanks everyone for your replies..yeah my head is just so weird sometimes it feels like a pullind sensation inside..like weights sloshing around???lol how do you describe that to a doc..har har.

    Someone else posted ina another topic about blow dryiong and washing hair...uh yeah that is like the worse thing lately. wellmaybe not worst. just cant stinkin do it..long hair goes in a ponytail and thats how it stays witha baseball bat.

    Dizz..love you dearest..I know you know and many others how difficult it is.

    Trying not to be a downer but darnit..you all that have a steady time and then DROP into the pithole of pots know what i am saying...FELLOW ANVILS!!!LOL..DIZZ.

    I think I am going to try the Vitamin b-12 I asked my cardio. he said the problem with that is is some people dont absorb it as easily..and thinking I have the gastroparesis he wonders how it will do for me..then via the injections.

    I did however get a STANDING order for IV fluids a couple liters over 5 hrs. when I need it I just have to calla day ahead before i had to call my docs to have them set it up...YAHOO...

    THanks all..guess I will keep truckin along. IT is so hard when your a mom with this..I feel for all of us..but geesh I get so dissapointed that I cannot do everything all the time much less the neccesities(sp).

    hugs to you :) Bumbleestumblybee

  20. Weak,dizzy And Feeling Exhausted

    in Dysautonomia Discussion

    Posted

    I am just weak and dizzy. Complaining I spose.... how in the world do those of you that this is your main symptom get throught his hump?? It has been going on and increased in the last few months..kinda progressing.

    Im weak as soon as I wake up..done salt and fluid loading. Trying some things the doc gave me..

    I havent really had any respite from it like I used to..used to only hit me moreso around period now it is daily all day long and hmmm no relief.

    Not trying to complain just blah blah blah..lol. :blink:

    I pretty much know the basics of helping OI and CFS is there something I am missing?

    Feels like my head and extremities weigh about a thousand pounds..does anyone else describe this as their weakness?

  22. Any Of You Do This? Tongue, Throat, Esophagus

    in Dysautonomia Discussion

    Posted

    THat could be triggering the nerves and muscles to be a little irritated..I too had all of those symptoms they wax and wane... I have had alot of testing done for this no real answers..the owrse thing I can say is when she numbed it for me to try and give me some relief..UGH!!! will never do that again...I tried aloe vera juice to relax it as it coats the throat all the way down..you might try it . THey make it tasteless and reall obviously check with your doc but I do believe it is pretty harmless.

    Good luck and I hope it subside for u a bit..

    HUGS...Bee

  24. So Many Questions, I Know. Now, About Neuropathy...

    in Dysautonomia Discussion

    Posted

    To me neuroapthy feels like tight gloves or bands all over body..I get tingling, muscle twitches,numb feeling all over, SEVERE muscle weakness( like a drop attack), I havew gut issues(gastroparesis) that is from neuorpathy(fullness constipation diarrea),i get it all..some is due to mitochondrial some is due to Dysautonomia..noone really knows. I also had swallowing difficulties that have come and gone.. i used to get the burining sensation in my nose(lol..I am sure you all remember)

    That is all i can think of to describe it a numb feeling with tinglies and all kinds of weird stuff..the only thing I know they treat it with which I do not take is Neurontin..not sure what eelse I think Lyrica.

    hope this helps...

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