I haven’t been around for a bit, not because I’ve been feeling better but because I’m still feeling the same old terrible and am so hopeless and scared about it.
Now I have a new symptom. Something I think many of you have mentioned as having but it never seemed to be part of my syndrome. Previously I had extreme motion sensitivity and a constant feeling of motion sickness and off balance, interspersed with severe eposodic hours long vertigo attacks.
Now, for about the last 3-4 weeks (ever since Hurricane Irene blew through the area) I have been having a walk on pillow feeling and am constantly bothered by mini spins (a second long) and feelings of being pushed or things suddenly moving. This is happening all day long, several times every hour. It is also making me feel very queasy which didn’t happen before. (This is hard to explain but when I have my motion sick feeling I don’t feel queasy or nauseated, I feel like I may vomit but the feeling is coming from inside my head, not my stomach. Hard to understand unless you’ve experienced it.). It used to happen occassionally, never to the degree it is happening now. More troubling is that neither valium or meclizine seem to help, whereas before either one or the other would give me relief. And it is scaring me into thinking maybe something is terribly wrong with me.
I don’t know if I am actually moving when I have these feelings of being pushed or if it is just a feeling inside me. It feels like the start of a vertigo attack, but thank God, the attack doesn’t come.
I am feeling so discouraged and depressed about this, feels like my life is over and I should move to a nursing home.
**Does anyone know if there is a medical term for this? **I’m trying to do research to see what could cause this feeling or what diseases it is symptomatic of but I don’t know what to search for. “Feels like I am walking on pillows” brings up a bunch of stuff about shoes. That’s not my problem.
Really sorry to read you are feeling so down. I am not at all surprised you are feeling this way, as it sounds like you are having a really hard time of it. I am sure loads of us on here can relate to feeling like that.
I can’t help with a medical name for the feelings you are getting, but I also had spells with them. In fact I relate a lot to your story, as I had spells of things happening a lot, then things going away, and then new things occurring, often just when I was thinking I was getting a lot better. It drove me insane, as it was like I’d just got over one thing, when something else turned up! I definitely had a spell with the feelings of false motion - I would be sitting on my chair and suddenly feel like I was falling off it (very fast) to the side, whereas I was perfectly still. It’s a very disconcerting feeling, and like you say, it does feel like the start of a full-blown vertigo attack.
However, the more positive news, is that eventually everything did stop for me, and I have pretty much fully recovered, so I hope it will be the same for you. I never took valium or meclizine, but seemed to get things under control with a combination of propranolol and pizotifen, although I think it was the latter that was the main thing that helped. Are you taking any preventative medication like this? (sorry, I don’t know what meclizine is).
I wish I had a solution for you but I have to say this is almost EXACTLY what I have been experiencing since this thing started for me about 7 weeks ago. I actually had about 1 1/2 weeks where I thought wow- maybe I am going to come through this in just a few weeks?! - but then the mini spins started and full blown panic attacks on top of that. I did finally give in and am taking xanax or ativan as needed to help with the panic. I really don’t think they help with the dizziness but I can’t even tell anymore. I am going to start either propranolol or atenolol this week as I know I can’t continue this way (even though I do feel more able to cope) and my blood pressure has been sky rocketing due to my anxiety.
Hang in there… it seems these are the exact symptoms many folks on here have struggled with…
i totally understand how you feel, ive had no relief in 3 yrs its a bitch of a condition. I have the pillow thing and the sickly feeling. Sometimes i have a juice with heaps of ginger sort of helps but not a great deal. The only relief i used to get was being in a hydrobath but it closed down. If you can try it, a least you get a hour or 2 of relief, not a cure though. I think your symptoms are vertigo/mav related, the only other thing i was going to look into was lyme disease but i also have very red dry eyes that came on just before this all happened.if u can tolerate meds youll have to keep trying that, i know this is frustrating and the drs dont have quick answers, its truly rediculous that more research and treatments arent around for vetigo as it really can destroy lives just as much as other diseases. Hang in there and keep pushing the drs
oh, thank you for understanding. This disease is horrible. Though actually I did feel a little better today. Didn’t have so many rocky episodes and feelings of being pushed and pulled. But tomorrow could be back to terrible. Now I have a cold on top of this so my head hurts and it feels like every step I take is echoing inside my brain.
To further depress me, I was reading an article about age related dizziness and it pretty well described some of what I am feeling.
*Symptoms and Causes of Dizziness Due to Aging
You may notice a lightheadedness, spinning sensation, giddiness, wooziness or
unsteadiness that occurs when quickly turning or changing positions, when bending
over and returning to an upright position or when looking up or down. These symptoms
last for a short time.
You may notice a tendency to sway or veer from side to side when walking. *
Hi bookworm,
sorry to hear you’re struggling. Just wanted to say I’ve had the ‘walking on pillows’’ feeling, as well as what I call ‘attempted mini spin attacks’, so you’re not alone, if that helps
This whole condition is unbelievably disabling, isn’t it? The good news is that, even though I’m struggling a little again lately, these things have massively improved with the use of Topamax (Topiramte). Are you currently on any meds?
Wishing you all the best - hang in there!
Tony.
TeeCee - I like that - “attempted mini-spin attacks.” Good description! Or how about “failed vertigo attack.” The hard part is I never know if a min-spin will turn into the real thing or not. If I knew for sure it wouldn’t and knew for sure I wouldn’t have any more vertigo attacks I might be able to handle this better. But it is the unknown that is slowly killling me. When the vertigo hits me it comes without warning so I always have to be on guard.
I tried Topomax but the side effects did me in after three days. Also had problems with nortriptyline and verapamil. I honestly feel like there is no way out of this, so discouraged. I’m currently living the anti-migraine, anti-meniere’s, low sodium, gluten-fee diet and am taking a diuretic.
Hi Book,
yes, “failed vertigo attack” fits equally as well. I know exactly what you mean - they really shake me up, and the anxiety INSTANTLY goes through the roof. I was reading to my youngest son the other night, and had a nasty one that lasted longer than the usual split second or so - this was more persistent and lasted more like 10 - 20 secs or so. I instantly dropped the book, sat bolt upright on the sofa, and just stared straight ahead trying to fix my gaze, thinking ‘please don’t spin, please don’t spin’, whilst an increasing ‘tightening’ in my head made it feel for all the world like the world MUST start spinning imminently. All the while trying not to freak out my son! Once it passed, I was so freaked out, my wife said, “Daddy can’t read just now…come over here and read with us” (her and my older son)…sigh…what a sh*tty dis-ease
I used to be in a state of ‘always being on guard’, but since the meds have started to work, I’ve gradually come to trust that the dizziness has come down a notch or two, and that they tend not to happen. That in turn lowers the anxiety and stress levels, and helps the whole mess unravel a little further, if that makes sense…
What side effects did you get with the Topamax? I only ask because I struggled massivley with Topamax for quite some time, before coming out the other side and seeing some imrpovements (you can see my experiences here: ( dizzytimes.com/showthread.ph … ith-this…. ). The title says it all: “…not sure I can stick with this”. Best wishes,
Tony.
So sorry you’re experiencing the maddening marshmallow feeling. Grrr! It’s really disorienting, especially when it feels so ‘external’. I’ve actually had a bit of this myself the last couple of weeks. It seems to have been set off by a severe allergic reaction I’ve had (horrible hives all over plus feeling sick). Only this time the sensation is slightly different in that it feels like it’s coming from within me as much as outside of me. Like my body is being pulled up off the ground, sort of like a bouncy castle. And when walking I keep listing to the left and staggering (but no alcohol is involved!). In the past I’ve also had these feelings when completely still, like I’m falling over. I’d say this vertigo is one of the most maddening symptoms of all.
It’s not nice, that’s for sure.
The only thing I can say by way of encouragement is that these feelings don’t seem to last forever and you can sort of almost get used to them. And they’re not fatal or anything.
Being well rested helps, or at least, being tired makes much it much worse.
Hi Book,
What side effects did you get with the Topamax? I only ask because I struggled massivley with Topamax for quite some time, before coming out the other side and seeing some imrpovements (you can see my experiences here: ( dizzytimes.com/showthread.ph … ith-this…. ). The title says it all: “…not sure I can stick with this”. Best wishes,
Tony.
— End quote
Tony -I read your other post. That’s great that you were able to stick with the Topomax. Side effects scare me and then I stop the drug. I am both med phobic and med sensitive.
I had hand tingling (very tolerable), nausea (not tolerable), inability to make decisoins along with irratibility and the one that scared me was waking up in the middle of the night with an asthma like feeling, as if I was having an allergic reaction.
