Feeling faint 99% of the time

[tyler911]

Hi All

Ok so i know i do not have MS, I think the docs have finally come to some sort of general agreement, this is Neuro Sarcoidosis, though my Neuro still believes it is MS

as most of you know i am on prednisone for the next 6 months, at 60MG a day, now i am wondering what the heck is going on, the last two weeks have left me feeling miserable, angry, and just plain cranky, a lot of my symptoms are coming back from pre diagnosis of MS, the dizzy spells, the head full of water thing, the imbalance, vision problems, cramps, the list is endless,

now it has gotten to the stage where, if i am on my feet too long, at work, i get the terrible sensation that i am going to faint, I have to hang on to the nearest thing to try and keep myself upright, I have not fainted yet, but i have come so close so many times over the last week, this is happening at home too, it is getting pretty scary

Yesterday i drove to the mall i was feeling fine, as soon as i got out of the car, i started walking and had to grab hold of someones car to stop myself from fainting, again it went away, without my actually fainting

I also have a lot of lower back trouble, which is new, and a thirst that will not go away, and my mouth gets so dry that i feel if it gets any dryer, my mouth is gonna stick shut,

Would anyone know if this could be the prednisone that is causing all this stuff, and that it could be my body no longer needs this high dosage,

I really want to get off this stuff as soon as possible, though i  know it is gonna take time to taper off it, I doubt very much it is flare of any kind, as the Steroids would keep that at bay, I would think

Anyone been down the this road with Steroids, and what was the remedy, or did it turn out not to be steroids at all

I am more concerned about the prednisone causing further damage to me, as i know it is a horrible drug to be on,

I have just had a ton of blood work done and waiting for the results which i will call about tomorrow

Other than the feeling of wanting to end up a messy heap on the floor and the extremely dry mouth, and the lower back pain I actually feel fine in myself,

just looking for any advice, if anyone has gone this

Thanks in advance

[tyler911]

Hi There

Yes it sure is not very nice, the dizziness, in fact in s.u.c.k.s,

Today I went out with my husband to buy some dresses, and a new computer table, oh lord i wish i had never bothered, what between the dizziness and the cramping in my legs, i could have quite easily sat down and cried, and talk about feeling foolish, i have no darned idea where all this cramping is coming from, it is on the outside of my leg just above the ankle, and whoa, the pain had me in tears, In one store i actually had to sit on the floor, was not sure if i was going to faint or want to chop my darned leg off,

I see my Neuro pretty soon, so i am going to have to tell him about it, my hubby suggested I call him as we were like a couple of minutes from his office, but i knew there was no way I was going to get in today, as i know how busy his office is,

I am hoping with all the latest blood work they mind find something that is causing it, and perhaps get me started on something that will at least help with the severity of it,

The fainting feeling is getting worse, but i think i may have found the trigger, I seem to be fine, all the time i am moving, but when i sit down, for a while, and then have to get up and walk, that is when the swimmy feeling starts, and i start to walk like i am drunk,

So now i am actually wondering if it could be a spinal problem, example, i am driving fine, get out of car, and walk start to feel like i am going to faint, same with sitting on computer, i am fine get up and think i am going to faint, seems to always after i have been sitting, or even standing doing the ironing,

gees, I tell you I am just so totally fed up with it all,

I know just how you feel, I would totally not wish this on my worst enemy,

I hope you are feeling better too, and that your dizziness gets sorted out

Thanks so much for your reply

Tyler

[lmeiser45]

I have MS, and the dizziness you described sounds exactly what happened to me a couple of weeks ago, it completely freaked me out!!!  I'm not on prednisone, but when I called my neuro, she asked me to try and wait it out a week and see if it goes away (thinking inner ear cold).  I couldn't handle it and she prescribed me something for dizziness in the mean time.  I hated the dizziness medicine, it knocked me out and felt like sleeping for 3 days.  It did take the bad dizziness away though.  I'm dizzy all the time, usually just 2-3 second flare-ups, but these were lasting longer than normal, at least a couple minutes at a time but all day long every 10 minutes or so.  Two times that week, I ended up walking side-ways to catch the wall as if the whole world was on a ship and the boat tipped.  It was horrible.  If the wall wasn't there, I would have fallen, and a pretty bad fall.  I'm only 36 and I teach kinder all day long.  It really freaked me out as well as my kids.  I still don't know much about MS (only being diagnosed 8 months ago), so I don't know what Neuro Sarcoidosis is.  I've never heard of it.  I hope you feel better and your dizziness does go away.  I don't wish it on anyone!!

[jensequitur]

I have a friend who had similar problems - it turned out she had orthostatic hypotension.  Basically what that means is that her circulatory system wasn't working hard enough to get blood to her brain, so she could faint at any moment.  This happened upon standing, and it also was a problem when she was walking for a while, like in Walmart.

It's possible that you've got some damage in your brainstem causing these problems.  

I would definitely talk to your neuro about your symptoms and ask about the prednisone.  As far as I know prednisone will cause you to feel a little jittery, and maybe a little warmer than usual.  It also raises your appetite, and makes you retain water.

[Wobbly]

I'm hearing more and more about people having Neuro Sarcoidosis... it seems to be happening more often now.  I would talk to you Dr about the dosage of steriods your on to see if lowering it could help.

Don't suffer through this and call your Dr... OK
let us know what happens and take it easy

wobbly

[rendean]

Dear tyler,

I would suggest you call whomever prescribed the prednisone and describe your symptoms. This is NOT a good situation and you do not need to fall or injure yourself. I have been on prednisone and have never had these symptoms ,if they are new to you as well I would call my doc a and report these symptoms.


Ren