Trying To Explain This To My Doctor... What Is This Called?

[icesktr189]

I think this is "dizziness" but im specifically talking about that feeling like your "rocking on a boat" feeling. When this happens the room does not spin like it does when I have vertigo. I have dizziness all the time, but this is different. I have a hard time explaining it to my doctor.

[micheller]

I get this too. It reminds me if I move my glasses up and down, everything looks like it's moving but it's not.

[misstraci]

Me TOO! I have this "rocking" feeling yet it is not vertigo and I hate when someone tries to tell me it is. The room is not spinning, I AM. I also wish I knew a name to put on it.

[julieph85]

i just experienced that for the first time yesterday... not fun!

[Dizzysillyak]

I did this for the first three months of my last pregnancy. Barf ..

I had some weird feelings while eating gluten that went away. Including ..When I stood up it felt like I

was standing barefoot on one of those machines with all the rolling round bars. Gluten and dairy

act like opioids in some people. I can't imagine taking an opioid on purpose ..

Fwiw .. I think you're description is perfect. Tc .. D

[jnew]

I have had this since July. I have asked neurologists, ENT's, and the POTS cardiologists. No one has an answer. I can say it is driving me mad.

[HopeSprings]

I had this for about a week shortly before all my POTS problems began. It's not a fun symptom. There's a disorder called MalDebarquement Syndrome that can cause this sensation. It usually starts after boat or air travel, but I guess other things can trigger it. You can read about it here if you haven't heard of it:

http://www.mddsfoundation.org/

[icesktr189]

Thanks! Ill definently read about it.! I havent been near a plane or boat but it looks like its worth looking into.

Some days my whole body "rocks" and other days, it is just my eyes. This symptom makes it really hard to focus on anything or watch tv or go online.

I really want to go gluten free but in all honesty, I am too lazy. I barely make it through the day watching my daughter and my fiance does the shopping and he barely knows how to follow a simple shopping list. Plus I LOVE sweets. They are the things keeping my mood up right now.

Has anyone tried to see if an anti vertigo med would help this? I know its not vertigo, but maybe it would?

[icesktr189]

Oh almost forgot to add, it get relief from it when I pinch the sides of my nose at the bridge from some reason. Not total relief, but I feel like it helps me see better and stops from moving so much. I actually have a picture when I was in labor doing this (about 2 years ago) when it started up.

[Dizzysillyak]

Hi dani,

I love sweets too and totally understand your feelings about going gf. I hope I didn't scare you away from

trying it by telling you about the cross contamination ..

I'm realky not trying to be pushy, I certainly understand how hard this illness it ..

but I wanted to let you know how easy it can be. At least for those who can handle small amounts

of gluten. And some gf sweets are better than the gluten filled ones. Yep .. Better ..

There are lists on the web of hundreds of common foods that are gf. Ready made soups, micro

wave dinners, luncheon meats, cheese, breads, cookies, etc .. Many can be found at walmart even.

Personally, I can't eat these but when I could I loved whole foods gf prairie bread, glutino's pretzels

and crackers, maverick ranch bacon, applegate ham, boar.s head anything ..

Betty crocker's brownies and cake mixes are to die for. My family likes these better than the regular.

Tinkyada pasta is delicious and makes the best lasagna.

Again, not trying to be pushy at all, but if I discouraged you or anyone else, I needed to correct that.

Tc .. D

[icesktr189]

Oh dont worry about being pushy! Not at all I just thought going gluten free was hard and I didnt know that they had gluten free deserts! Deserts are my weakness haha I might start trying the gluten deserts and pastas since I love those things and eat quite a bit haha

Thanks for the suggestion!

[abnel]

Dani I had this symptom 24/7 for the first 8 months of POTS ranging from mild to severe. The ONLY thing that ever made me feel normal was to sit as a passenger in my husband's car and have him drive and drive. The motion of being in a car made me feel like I was completely normal almost and I didn't feel giddy at all. As soon as the car would stop at a traffic light I couldn't wait for the car to start moving again.

This is truly bizarre as I now go through periods where I can't stand being in a car because the motion makes my shortness of breath worse.

I really don't understand POTS!!!

[icesktr189]

OMG lotusflower you hit the nail on the head with the driving. I have that same reaction too. I love going in the car because once it moves, I feel like I stop moving! What the heck is up with some of these symptoms... i know are nervous systems are messed up... but dang! some days it just seems like a sick joke...

[jnew]

I agree. It does seem like a bad joke...one that is horrible. How much os one expected to take? I wondered why riding in the car felt better also. I am at the end of my rope.

[louloutinks]

disequilibrium?

[icesktr189]

my ent set back wnat she thought were crystals in my ears by doing this movement excercise on me. well it didnt work and just made my pots worse for the day... I feel like I have tried everything. klonopin is a hit or miss...sometimes it helps, other times it doesnt do anything.

[jnew]

Dani,

Do not do klonopin. It is a benzodiazapine...the most addictive, harder to get off of than heroin, drug class on the market. POTS is new to me. Benzos I am an expert at. That's how I ended up with POTS. And many people in benzo withdrawal, which can last for years, get the movement we are experiencing. I was put on benzos for restless legs syndrome many years ago. I never abused it or upped the dose. Tolerance set in and I wanted off. It is a **** you cannot describe. So I went to detox in Mar of this year and had a toxic reaction to a drug used and ended up in the ER where they gave me benzos. I now have to taper from the benzo as they believe it is the factor in my POTS. Between that and POTS and the movement of rocking and bobbing, I am in a **** I would not wish on anyone. Stay away from benzos, please. Go to benzofreedom.org and read some of their stories.

[icesktr189]

I only do klonopin as needed ( I have been on and off them for 5 years ish, but I wont take them everynight) At most I take them 3 times a month. I do know a lot of people on here that do take them everynight, but I dont have a huge problem getting to sleep, just staying asleep.

Im so sorry you had to go through that! Is it getting better for you??

[icesktr189]

Oh not trying to say you dont have POTS, but do you think that a lot of your POTS symptoms could be from the benzo withdrawal??

[jnew]

Hi Dani,

Glad to know you aren't taking them regularly.

No, it's bad. Worse since the detox. I do have POTS. Whether it will improve or not after I get off remains to be seen. Between withdrawal, POTS, and the possible rocking syndrome, I feel like I'm hanging by a thread. I was ballroom dancing last year, and now I don't leave my home except for dr's appointments. The POTS and rocking started after the failed detox. It was the trauma I think. I was on less than the equivelant of 1/2 mg of klonopin. Some people think theat being on a small amount makes a difference, but once it has you, the amount is insignificant. And the withdrawal symptoms are burning, twitching, muscle weakness and pain, insomnia, intolerance to light and noise, tachycardia and much more. You can see how it overlaps with many of the same POTS symptoms and many other diseases. It is rarely diagnosed for what it is. Sound too familiar? Just don't want to see anyone go from the frying pan into the fire. Dr Grubb's assistant told me they will not prescribe benzos for POTS as they make you toxic. She is correct. I hope you sleep well.

[brethor9]

I am the same.....feel much better when in the car....hubby says its because my nervous system is distracted and more focused on the car ride....too bad we couldnt just drive around forever

Bren

[POTSMama]

Dani,

I am an audiologist so have dealt with patients with dizziness and vertigo. When it feels like the room is tilting rather than spinning, I tend to call it "dysequilibrium" or it's fine to just tell your doc that you feel like the "room is tilting or rocking", which is more descriptive anyway. I too have had episodic tilting and sometimes vertigo (the benign paroxysmal positional kind that goes away after a few weeks) but I also know what you mean about that feeling that the room is moving and you are not. I have also noticed that during the worst of my POTS episodes, my perception is off and things don't appear to be in their right size orientation - - for instance, this morning when I walked into the bathroom and looked down at my feet, they appeared longer than normal relative to my legs (seriously, that's how it looked for a few minutes until I shifted and blinked), and when I went back to bed it appeared to me that the door to the room was farther left than it usually is.

Now, if I were to tell my doctors that, they'd probably lock me up as a nutcase, so I just tell them that my vision and depth perception have been off (which is also true, as I sometimes see slightly double, a phenomenon my eye doctor can't explain so I just live with it as it doesn't occur often), but I bet some of you on this forum know what I mean about things seeming out of proportion visually during dysautonomia attacks or vision being blurred?

Carol

[POTSMama]

Dani,

Oh, I just read your post about the crystals. Yes, those are crystals in the otolith, a structure in the inner ear and sometimes when they are floating around they cause vertigo. That's the benign paroxysmal positional vertigo (BPPV) I was mentioning - - BUT it causes true vertigo/spinning, not tilting, so I'm not surprised the (presumably Eppley-type) maneuvers the ENT had you do didn't help.

Carol

[icesktr189]

Oh yes seeing things that are not normal are very common. Today I was going to the bathroom and looked down and the floor looked like it was raised up. I dont actually see things that are not there (sometimes I see a dark flash out of the corner of my vision or a light strike by very fast), but I dont hallucinate. It just seems like my perception is very off.

I do have vertigo, but it comes and goes. Usually its when my blood pressure is very low and I stand up which can cause severe vertigo. I almost never have it laying down though. What treatment can you recieve from this? I was thinking of making an appointment with my neuro, but can he even help me with this one? Thanks!

[HopeSprings]

Carol since you have some experience in this area... have you heard of Mal de Debarquement Syndrome? The reason I know about this is because of a Mystery Diagnosis episode and she described exactly what the others are talking about. A rocking sensation (like being on a boat) relieved by the motion of the car. The only place she was ok was in a moving car. Problem is I don't think there's great treatment for it, but a diagnosis is always nice. I've often wondered if an inner ear problem and POTS are linked. So many of us have ear and dizziness problems. The balance and autonomic centers are very related. And if you think about it -- POTS is about symptoms with positional change. I don't know that it explains the whole picture, but I definitely think there's a link.