Dizzy from ITP?

I have experienced extreme fatigue when my platelets get low, but the past few weeks its turned into dizzy spells as well. Has anyone else experienced this?? I have had my hardest bout with fatigue yet these past few weeks. I also work in retail and am always on my feet. I find it extremely hard to get through each day at work and feel like I am falling as a manager because I am so weak I can't focus on the sales perfomance as much as I used to.

Yes, I had dizzy spells when counts were under 10. Really weird, room tilting dizzy.

I also have had dizzy spells, like Sandi said, it felt like the room was going sideways! Not to often, and didn't last for long periods. I thought it had something to do with vitamin deficiency or something. Don't beat yourself up over feeling fatigued and such. Do your co-workers know of your health situation? If not, maybe you should share and if they do, I'm sure they understand. It's gonna be alright.

I had a dizzy spell today, but i also had my count checked this morning and they were 30, could i still get dizzy spells at that level or would it be something else. They did mention my potassium was slighty down again to 3.1 and they would like it a bit higher so not sure if that could be why??

That is interesting - when I was at 10 and got the call at 3:00am letting me know I was critical - this was when I was very first diagnosed, the nurse on the phone asked me if I was tired or if I had noticed anything strange about how I was feeling and all I could think of was that whenever I stood up, I had dizzy spells.
I know that's common when you stand up from a seated position, but these were lengthier and weird. I couldn't focus on anything and the room seemed to get dark.

Now though, I seem to only have a little dizziness when I am really tired and it doesn't appear to be related to platelet count.

yes, definitely I too have dizzy issues when my levels are low. And the fatigue..I had always heard that from other folks w/ deseases but now I truly know the feeling. Your limbs feel so heavy and your mind feels like mush. I hope your levels go up and the symptoms reduce. I did learn to SLEEP as much as you can to heal. HOpe you can find time to do that! Hang tough.

My platelets went back down to 1000 again yesterday and I am again at the hospital. I didn't really feel that bad this time, and have only had petachie and a couple of blood bruises--which went away. No bruises this time. But, as my platelets have been falling for at least a week (went up to 187,000 with the Decadron and IVIG), I have noticed that I get dizzy when I stand up; also, when I am laying in bed and turn my head sometimes, I would get a little dizzy. I've had some fatigue--but not too bad. Would have never guessed my platelets went so low.

Gretchen - I had the room tilt too. Very strange. The whole room would tilt on a 45 degree angle; it would last about 20 to 30 seconds. Freaked me out at work, I'll tell you that.

Does anyone know why low platelets would cause dizziness? I've never noticed a correlation, but I'll pay attention to the possiblity now. Karen R

I thought i was imagining things! I have the dizzies too sometimes i feel like i'm loosing my balance and it's always on my left side. Hummm... I thought it was possibly medication related.

Lorie85, I, too, always seem to get dizzy on my left side. I'm not sure why, but it's just mainly my left side. Even when I'm laying in bed, and I turn my head to my left side, I can feel the dizziness. Also, when I'm laying down on the ground and go to get up, it's my left side. The lower my platelets go, the more I get the dizziness, too. So, we need to be very careful when getting up. One time I almost fell because I wasn't paying attention to these signs. I don't think it's medication related at all.

Hi
My platelets have been down to 1 (UK measurements) and never been dizzy through ITP thankfully - yet.... I will add after reading this

I have been dizzy through vertigo and still get very mild vertigo and think I have just been wrongly diagnosed from an outside Dr thinking I have anxiety issues because aparently they can be the same symptoms. I have self controlled my vertigo a lot by wearing a hat. Perhaps that is a mistake? But this isn't ITP I know, but may be the fluid in your ear moves like it does for those with vertigo and Menieres Disease. When you get too tired and platelets too low it affects the fluid in your ear in some way. Have you discussed it with the haematologist because you might be able to get some travel sick tablets that don't clash with ITP treatment and balance it all out.

Just a thought

Hi Rhiannon,
I, too, could have a mild case of vertigo. I know the Decadron can sometimes cause
fluid in the inner ear. The first time I took Decadron 4 years ago, I had a lot of trouble with my inner ear (like a lot of itching that wouldn't go away). If it does get worse, I will ask my doctor to give me something for it.

Thanks for your suggestion!

Dee Dee

Oh yes Sandi, it's especially strange when your carrying a tray of food and feel like your walking sideways for a couple of steps! A couple of other things said here caught my attention. The left side....everything that goes "wrong" is on/in my left side. I have the worst joint/muscle pain in my left side. My left leg and foot have the worst numbness/tingling/pain. And, the ear itching! My husband yells at me because he thinks I'm gonna poke the q-tip all the way through my head to the other ear! It just won't go away. Strange.

For all those who experience dizzyness with ITP please read this extract that I came across from The Information Pack Issued by the Meniere's Society UK.

"How is my inner affected by Meniere's disease?
How are my semicircular canals affected?

Attacks of Menier's disease change the signals being sent fro the semicircular canals in your balance organ. Experts do not know exactly how or why this happens, but several processes have been suggested that may or may not be involved. These include injur/physical changes within the inner ear, changes to the inner ear fluid (The Endolymphatic Fluid), or the result of auto immune disorder. Other sugestions have been it could be genetic and runs partly in families........ Taken from the Meniere's Disease patient handbook (without permission i will add for security)

But that is why some of you experience dizzyness and I would strongly suggest you take it up with your haemo's who might be able to help with exercises and compatiable drugs if needed. ITP is an autoimmune dissorder!

I have started doing the nodding exercise (I do a full nod of the head 10 times, break for 10 seconds then nod the head again another 10 times- am guessing it helps balance out the fluid or something). and it made a big difference to my trip to the supermarket yesterday and made an enormous difference in church this morning. It could be coincidence because they only speed up recovery. They are not a cure. Just makes things more pleasant. I experience Endolympathic hydrops usual in the supermarket and church and didn't have them this weekend. Whether Coincidence or not, its first time for a long time I have been weekend free of them!!!

Hi, I had the room tilt dizzy feeling and felt very uncoordinated. The doctors checked my iron and was extremely low. I had to take slo-fee iron and b12 shots and it really helped. Now I eat an egg a day and foods high in iron. I hope this helps.

Hi
I hope so for you because it not a nice feeling and Iron levels need raising from what you say. If the tilting etc still continues I would ask about vertigo though