New Symptom - Spinning

[Roselover]

When I was a little kid, I loved spinning and spinning and then trying to walk and then falling over into the grass.

Well, in the last two days, I've had spells like this, but no... I wasn't spinning myself.

It's like all of a sudden the house is spinning like a carnival ride and I try to stand, but I can't and I fall over. Then as I lay there, the room spins around me and the edges begin to go gray.

I know, probably lots of you will say - oh yeah I've had that - but you know, with a new experience/symptom, it really helps to hear that.

If anyone thinks this sounds suspicious and I need to see a doc right away - let me know - but I already have an appointment with my PCP next week and I'll tell her about it.

It's a bit disconcerting, because I don't know when or why it hits which makes me even less independent - ya know?

Thanks for being here everyone

~Roselover

[ellepee]

Hi-

I have been experiencing a sudden spinning sensation for awhile, it's been over a year now. It's such an awful symptom as I never know when it's going to come on and I don't have to do anything to provoke it. It is what keeps me from driving and is very frustrating. I've seen an ENT dr who did lots of vestibular testing and I even went to vestibular rehab which was a waste of my time as they now do not believe this dizziness is caused by the inner ear for me.....they think it's probably neurological but nothing has helped. I find myself to be dizzy most of the time, sometimes it's a rocking sensation as if I'm on a boat and other times its spinning. Sometimes it comes and goes quickly and other times I find myself laying down for hours without being able to stand up. It's not a fun experience, especially when you don't do anything to provoke it. At least when we were little, we would know why we had this feeling from spinning around to bring this feeling on.

You are not alone.....I feel like I am drunk most of the time when I haven't had an alcoholic beverage in ages.

[Wufflebear]

I have had this a few times since january, when it first showed up. I dont like it either and it luckily only has happened when I am sitting down so far.

[Roselover]

I thought about an inner ear thing, but I haven't been sick, no sign of ear infection - don't tend towards those either. I am also in a flare of symptoms and have some other neurological ones going on - like face twitching and numbness.

I'm dizzy a lot and sometimes when I lay down it feels like the bed is rolling - but these two episodes threw me completely off my feet!

Yesterday it happened suddenly and I fell behind my bed and as things greyed, I worried no one would find me back there. I called out "Help" and my son (13) came in and said "Mom, what are you doing?". After I got up and laid on the bed we had a good laugh together. I figure you either have to laugh or despair and I'm tired of despairing so I'd better laugh!!!!

And yet - having these come on unexpectedly is no laughing matter when you start thinking about being out of the house or driving etc.

Thanks H and E for responding. And I'm glad to hear about your "wasted" vestibular testing E. I know it doesn't mean it's the same for everyone, but it does help me go slow with testing ideas from my Dr.

~Roselover (Melanie)

[bttrflyamby1981]

I spin too.....but normaly if I am bending over or am working on the weeds or garden. I usually can feel it come on and can prevent it from being real bad.

Amber

[Sophia3]

I get this often and have recently tied it into PMS or period mode where it triggers full blown Vertigo at times or just the spins...usually followed by NAUSEA or lying FLAT for hours.

Saw ENT "Meniere's specialist" and have MANY EXPENSIVE TEST in office to rule out 'inner ear problems', he said it was an over reactive brainstem. My eyes see things and over reacts...I have ALWAYS gotten violent motion sickness EVEN from using binocular or wearing bifocals....the no line bifocals can cause motion sickness but the plain kind did for me as well....so have two pair of glasses.

My endocrinologist autonomic doc dx me with BPPV and I still believe that is what I have...even though the specialist 'claimes they ruled it out.' I almost through up from the test...especially the pushing water into the ear canal!! Barbaric when it was the cold then the hot water but I digress. "NORMAL" to get sick from it but not to the degree I did.

So many of us have balance, dizzieness, vertigo issues...much of it is low blood flow to the brain as well.

[yikespanic]

When I first got the "virus" that they say triggered my POTS, it was the dizzyness and the spinning feeling that came on first and I was sent to a vestibular specialist at the cleve clinic who ran oohdills and oohdills of strange tests. All they could find was that they could put a vibrating device on left side of my neck and trigger a spin for me. It felt like I was going a zillion miles an hour in my head!!!! The explaination was that the virus attacked my ear balancing mechanism and sending signals to my brain that I was not level, and my neck was sending conflicting signals to my brain trying to complansate, thus the crazy dizzys. Of course this is my laymans explaination of the jibberish they tried to explain to me. I still have it happen and it is very upsetting, especially when you are driving and walking. It doesn't happen very often but seems to be related to when my ears feel blocked due to allergies or a cold or such. But then I've had it happen if I turn my head to the left quickly when my ears are feeling ok. This is one thing that delayed me being diagnosed with POTS, because when I kept complaining of feeling dizzy and graying out they kept saying it was this other problem. It wasn't untill a nice dr. took my BP and couldn't believe no one had taken it positionally before. WHY DO WE HAVE TO INDURE SUCH CRAZY STUFF!!!!!!!!!!!!

Kim

[Poohbear]

Awwww Melanie!!!! I HATE that you are having something new to deal with!!!!!

I know you hate it too!!

I have been getting lots of spinning vertigo the past 4-5 months. For me, it seems to be tied into migraine (both with and without aura and with/without head pain) and it also seems to be hormone related for me.

I DO NOT understand the hormone component to vertigo but after watching it for several months there is clearly a connection between the two in my case.

Like you, mine come on sudden and sometimes last a few days. I haven't found much that helps other than lying around.

Keep us posted on what your Dr says and if you find a connection to your symptoms or anything that helps you.

Hugs!

[Sophia3]

re: hormones

Years ago before dx with ANS problems I read in a couple of women's book that a dip in estrogen can trigger dizzieness. Course it is MUCH MORE complicated than that...if a doc had it figured out, they would make history!!

I have a little red paper back book called THE PAUSE and another book Listening to Your Hormones and both have good stuff to enlighten one about menopause and the years leading up to it. Both were written 10 years ago or more as I have had them forever...but they were helpful in trying estrogen supplements which helped a bit many years back.

ALSO i meant to mention that when I turn my head quickly or LOOK UPWARD I trigger 'sensation' of falling and have to stop...especially the looking straight upward. I COULD NEVER paint ceilings!LOL.

Bending over is another one...have to be careful to squat to clean litter box, etc.

[Guest tearose]

Have you ever noticed what your heartrate is when you are getting the spinning sensation? If it helps, try wearing a heart rate monitor.

I noticed the dizzy spin feeling moreso when my heart was actually very low. We don't discuss this much here, but I get spells of bradycardia in the evening especially if I have been in compression all day and am reclining in a chair in the evening...I usually will sit up or remove some compression and then I feel better.

I do mean low though...I set my alarm to go off at a high of 140 and a low of 40. So when I am spacey and tired it may be my alarm that kinda "wakes" me to the alarm at a low of 35 or 37.

hope you figure out what is happening!

tearose

[Sophia3]

tearose

In my case it is tachycardia...pounding so LOUDLY I can hear/feel it in my ears.

Always triggering or I should say, worsening, my symptoms.

Just my situation.

[Roselover]

Tearose,

That's a very interesting idea. I don't have a heart rate monitor - just a BP monitor and I wouldn' be able to find it and put in on during one of these spells. BUT- I do not remember any heart pounding with it so this might be something to look into. There was a point a couple of weeks ago when I took my BP feeling week and my HR was 41 which I thought was very low. With my BB it usually runs high 50's to low 60's.

Thanks for the idea.

~Roselover

Oh, and I forgot to add - have no idea where my hormones are. Just had them checked by the OB and said they are all normal - estrogen androgen etc. I have a hysterectomy so don't really notice any hormone cycles.

[Sunfish]

i have had this badly twice, or rather during two periods. it's probably the only thing (knock on wood) that seems to have at least gone into hiding for me these days.

i had it in high school with an inner ear infection. ears didn't hurt at all. in fact the vertigo/spinning was my only symptom so don't rule out the possibility.

then at the end of college after several years of fairly stable/controllable autonomic issues (diagnosis had been NCS up to that time) i started getting REALLY BAD episodes of vertigo that were absolutely miserable, scary, etc. i would even throw up at their worst. often they would start after i had fainted but not always. at times my HR/BP were wacky but not always & not in any consistent direction. things subsided (in regard to the vertigo) around 4 months later when my meds were switched around to get my BP/HR under a bit better control.

since then other things have definitely gotten much worse but the severe vertigo hasn't returned. i get a bit "off" in that way (sort of pre-vertigo, if there's such a thing) at times, but not the full-blown vertigo that takes over.

i don't envy any of you that have this more regularly. it is NOT fun (as if you need me to tell you that )

hope it disappears for you as it did for me,

melissa

[briarrose]

Mel

I've had this a few times but it's been quite awhile. The spinning was bad enough but it caused my nausea to be 10 x's worse than the norm. I never went to the doctor about it because it was one more thing that he would've said, "you have a chronic illness, you need to learn to accept it" and I just wasn't in the mood for that line of his.

I hope it gets better on it's own.

steph

[morgan617]

I've had meneires since my 20's. I am 51. Vertigo is the most miserable symptom I can have of all of them. You are completely helpless with it. Or I am anyway.

The room spins and rocks up and down like a boat, because I have it in both ears. So each one is trying to compensate independently. Yuck.

With meneires there is a symptom called "drop attacks" where your legs just give out and the spinning starts. Or they occur at the same time.

It's a good idea to see an ent to rule out meneire's, or an acoustic neuroma (benign tumor around the inner ear) or bppv. These can all be treated. I would never assume that a new symptom is just a part of pots.

The tests are not a barrel of fun, but as a rule, if done correctly, pretty accurate.

Good luck and I hope it's just temporary. You can get a virus call labryinthitis, without having had any upper resp symptoms at all. It burns itself out like other viruses do, but can take several weeks. It does resolve however. morgan

[Jersey Girl]

YES..YES...YES I had terrible 'spinning sensation" all the time when I first became ill and saw ear specialist who couldn't find anything and told me that I must be very stressed. Then I failed the water in your ear test as well and was sent for rehap training with little improvement. I am also more symptomatic related to hormone fluctuations and definitely have bradycardia as well at times. I think I need a monitoring device to see if it is related to a slower heart rate at times. Interesting observations. I get nerve pain in my left ear frequently still 4 years later and have had my ears checked numerous times so know it is not otitis. I never had ear infection in my life. I had my legs "give out" too when I was first ill. I still get the spinning sensation at times and can only lie down and wait for it to pass. Martha

[corina]

hi melanie,

i have the spinning as well, on and off a few times per year. i can't predict when it's coming, don't feel anything special, it just happens. i always stay seated or laying down as i'm sure i would fall down and hurt myself. i stay laying down until it's gone (last time it took about two days). don't know where it comes from and, like you mentioned, can't do anything to measure anything. i'm just happy not hurting myself and (of course) mad because i don't want it to happen

hope things will be better for you soon,

corina

oh, and it also can happen at night, when i'm sleeping and want to turn myself. it makes me wake up and feel terrible. grrrrrrr!!!

[Susan Lake]

I know that spinning feeling oh too well. I am sorry you are having such trouble. I spent over 5 years with an ENT who was sure this spinning stemed from a virus that attacked my inner ear and was sure I had BPPV. I went to physical therapy and did many manuevers such as the Epley to try to ease the sensation, this nver really helped (sometimes I think it made it worse). I had every inner ear test that could be done and they never found anything like menieres. Two years ago I went to the Cleveland Clinic and they diagnosed POTS and BPPV.

I would say that I have that spinning sensation at least 3-4 times every two months. I have definatley found a correlation with that and my hormones. I wish I could offer advise but the best thing to do natuarlly is to try to lie or sit still and pray that is passes. I can have this feeling for up to week. Maybe try to sleep upright with your head propped and not on your side, I have found this to help. Occasionally, I will take a klonopin and this can help quiet what is going on. The only other med I am on is Toprol xl for the pots. I hope you are doing better today. There is some comfort to know you are not alone.

Susan