NO THIRST and Tilt Table test

Discussion in 'Fibromyalgia Main Forum' started by TiredbutWired, Aug 26, 2002.

  1. TiredbutWired

    TiredbutWired New Member

    Hello,I combined these because I think they kind of go together.I have went back through search and read on the tilt table test.I have had NO thirst for months now.Thank God I take a lot of pills so I have to drink.I just can not seem to get it to go down just like if you had lost your appetite and had to force yourself to eat.All I have ever drank is water.I got the tilt table test done thought it would be a piece of cake.Well it was horrible.I felt pretty good that day,they stood my up and I went from a 70 resting to 110 immediately then up to 150.my heart felt like it was going to pound out of my chest,dizzy,weak,nausea,,Hot,knees hurt felt like my legs could not hold me up,and my back hurt like a big weight on it.30 minutes of torture.I was hoping that I would faint so they would put me down.Got back flat on my back and started feeling better.This explains why I have not been able to stand still long enough to brush my teeth.They said fluids was a big problem,to increase them and my salt.Put me on a beta-blocker[atenol].Also to take thermotabs.It has only been about a week but chest still hurts,my lungs or back?And my legs feel like noodles,hard to balance etc.I am not clear on what happened,I was pretty out of it.I do not have the test results but they gave me inscructions on what to do and avoid.I have been eating lots of soups as they suggested and am drinking a little more water.How long will this take?i am in a lot of pain sometimes.Have a appointment with new primary on thursday.Can anyone shed any light on this or experences.I also just got a chest xray,no results yet.Thank You,Tracey
  2. TiredbutWired

    TiredbutWired New Member

    Hello,I combined these because I think they kind of go together.I have went back through search and read on the tilt table test.I have had NO thirst for months now.Thank God I take a lot of pills so I have to drink.I just can not seem to get it to go down just like if you had lost your appetite and had to force yourself to eat.All I have ever drank is water.I got the tilt table test done thought it would be a piece of cake.Well it was horrible.I felt pretty good that day,they stood my up and I went from a 70 resting to 110 immediately then up to 150.my heart felt like it was going to pound out of my chest,dizzy,weak,nausea,,Hot,knees hurt felt like my legs could not hold me up,and my back hurt like a big weight on it.30 minutes of torture.I was hoping that I would faint so they would put me down.Got back flat on my back and started feeling better.This explains why I have not been able to stand still long enough to brush my teeth.They said fluids was a big problem,to increase them and my salt.Put me on a beta-blocker[atenol].Also to take thermotabs.It has only been about a week but chest still hurts,my lungs or back?And my legs feel like noodles,hard to balance etc.I am not clear on what happened,I was pretty out of it.I do not have the test results but they gave me inscructions on what to do and avoid.I have been eating lots of soups as they suggested and am drinking a little more water.How long will this take?i am in a lot of pain sometimes.Have a appointment with new primary on thursday.Can anyone shed any light on this or experences.I also just got a chest xray,no results yet.Thank You,Tracey
  3. teach6

    teach6 New Member

    has several different names, Orthostatic Intolerance, Neurally Mediated Hypotension, to name a couple. I have the same problem and I would never submit to a tilt table test because I know I would suffer for days. There are many ways to treat this, depending upon how you react to the treatment.

    My doc began with a Beta Blocker, which only made me more fatigued. I didn't think that was really possible! So he took me off that and started me on a very small dose Proamatine, which is a vasoconstrictor. Then he added Florinef, again beginning with very small doses. Finally he added back the Toprol (Beta Blocker) and that time it worked. We worked with the dosages to get the best possible results and that took several months.

    I still can only walk short distances and only stand briefly. I keep a chair in the bathroom so I can sit for everything possible. I also have a stool in my kitchen which I use when I try to do any work there, which is seldom. I've recently ordered a scooter becasue without it I am unable to go shopping. I use the electric carts provided in some stores.

    Last week I attended a business conference for which I rented a scooter and I felt much better by being able to use it. Quite frankly, without it I could never have made it from my hotel room to the conference.

    Good luck to you. It's a frustrating condition, but it is possible to learn to live with it. You might check out www.ndrf.org which is a website for dysautonomia, which means malfuncting of the autonomic nervous system, the cause of all this mess!

    Barbara


    [This Message was Edited on 08/26/2002]
  4. Shirl

    Shirl New Member

    That sounds like an awful experience. I sure hope you get some input here for that test.

    As for the thirst thing, I would never drink anything if I waited untill I was thirsty. I don't get thirsty, in fact I have to convince myself to eat too. Been like this all my life.

    But you need to drink your water, I just recently found out how important the water drinking is.

    I keep the amount (half my body weight in ounces of water a day) of water I want in two bottles by the computer, that way I know at the end of the day that I drank them.

    Go see the site; www.watercure.com It will give you an idea how important drinking water is, along with the salt.

    You could be dehydrated, that would give you that feeling that your legs are wobbly, do take the advice of the doctor with the fluids.

    You take care, and drink that water!

    Shalom, Shirl
  5. roro

    roro New Member

    Why oh WHY do they have to do those dam tests! Cant they just take your blood pressure in a few different positions? Geesh! My doctor said I have NMH and is sending me to a neurologist on 9/3. If he tried to get me to do that test, i am gonna tell him NO WAY!
    I hope you feel better soon.
  6. TiredbutWired

    TiredbutWired New Member

    Thank you that was so helpful.I do have a few more questions.Did you have trouble with drinking water?The beta blocker did you notice any depression with it?I tryed to increase it and felt really blue so now I went back down to see if it was that.I have felt really bad and it is restricted to everything you do.I have to sit to do everything and there is so much pressure in my lung area,it is like it goes from my chest all the wat through.Just a couple of hours ago I was walking back from the bathroom and fainted.I woke up on the floor like I was taking a nap.I am fine a little carpet burn on my knee and thats it.I have wanted to start my new program but it is so hard to walk and with all the other symptoms.I have tryed the hydotherapy and that was great.I got a tube and you just hang vertical for 15 minutes.I know it does not sound like much but I could not beleive how good it felt to be vertical with no pain.I felt like screaming I can stand!!That pool we never use might start to be helpful after all.Temp must be I think 85 degrees.Thanks Tracey
  7. TiredbutWired

    TiredbutWired New Member

    Shirl,I did notice last night that I am really not trying hard to drink the water.So I started forceing it down.I need to be more responsible for my health.No wonder I feel so bad.I use to get IVs and I always felt better the day I got them.I seem to have some kind of bladder problem too.I keep thinking i am to young for this but I see there are a lot of people on here younger than me.Hope I am getting some of this stuff over early on and maybe my late years can be a little more relaxing.Just a thought.Tracey
  8. TiredbutWired

    TiredbutWired New Member

    I am glad I did the test because for months I have been telling doctors,I have no thirst and they would just write it down.I am not sure but I think that it could help with disability[guessing}.But intil I did the test my blood pressure was okay because I was sitting down.I hope if you have this problem that you catch it early on.I was at a cfs/fibro specialist out of town so I did ask them Do I get a copy of that test because I am never doing that again.They said they would send results to the doctor.He is our new primary and I am curious what he is going to think about all this and if he believes in cfs.The specialist said any problems and he would personally speak to the new doctor.My husband wrote a letter to every primary on my list explaining that I was in mid treatment for cfs and he was the only doctor that wrote back.Take Care,Tracey
  9. teach6

    teach6 New Member

    I have no trouble drinking the water. In fact way before I had any idea I had NMH I was drinking a lot of water. Now with the florinef I am thirsty a lot and I know I need to drink. I take a water bottle wherever I go and have a Brita pitcher upstairs and in the fridge, with a big Brita canister on the counter near my sink.

    I did not have any problem with depression with the Toprol. However we are each different and I would suggest that you mention this to your doctor. If you are fainting then you should defintiely mention that also. Do not wait until you have another appointment, call and leave a message.

    I hope you are able to get some control of this soon.

    Barbara
  10. beh43

    beh43 New Member

    Hi All,

    If you are taking Florinef make sure to get enough potassium. Two good sources are OJ and V8 Juice. I eat crackers and pretzels to get enough sodium. Nausea is an indicator that you are going to crash. Drink as much as you can and get flat.
  11. beh43

    beh43 New Member

    Hi All,

    If you are taking Florinef make sure to get enough potassium. Two good sources are OJ and V8 Juice. I eat crackers and pretzels to get enough sodium. Nausea is an indicator that you are going to crash. Drink as much as you can and get flat.

    This is my 10th year with AD. I was only given a firm diagnosis a few years ago. I hope this will help someone new to the DD.

    Betty
  12. teach6

    teach6 New Member

    My doc checks mine regularly and I am on rx potassium chloride, 20 MEQ's in AM and 30 MEQ's at night. I take a rather high dose of Florinef, a total of 0.25mg a day.

    Barbara