I can't describe it but it feels like everything is spinning

[doglover815]

Since my most recent flare (2ish months ago) I have a lasting symptom that I can barely describe but it is driving me nuts! I feel like I'm on a boat and have motion sickness (minus nausea) OR maybe a better description is that I just stepped off of a spinning carnival ride. I don't necessarily feel dizzy or lightheaded, just "off." It gets worse when I am in public or areas with a lot of stimulation, and it gets worse as the day goes on. When I am in public I feel like I have to hold on to someone or I will fall over. I feel like I am walking on stilts and will just tip over. This problem also seems to affect my vision to the point where I can't focus because I feel like things are spinning, especially when I am reading.

My neurologist prescribed 2mg of valium but it hasn't helped. My biggest concern is how I can function and work with this problem. I have an active job, but even sitting for long periods of time in a noisy environment makes everything worse.

Does anyone have any suggestions for solutions? Does anyone experience something similar? Thanks in advance for your responses.

[Kimba22]

Hi doglover,

Sorry about your flare. This is vertigo. Valium works for some of us, but you might respond better to a different drug, like Meclizine. Here is more info: http://www.nationalmssociety.org/Sym...ss-and-Vertigo

Good luck!

[doglover815]

Thanks!

Hi doglover,

Sorry about your flare. This is vertigo. Valium works for some of us, but you might respond better to a different drug, like Meclizine. Here is more info: http://www.nationalmssociety.org/Sym...ss-and-Vertigo

Good luck!

Hi kimba22,

Thanks for responding and providing me with that information. I should have said I tried both meclizine (which made me tired but didn't do anything for the vertigo) and baclofen (which I was surprised but it helped but also came with side effects). The nurse told me to give the valium some more time so I'll keep at it and try to remain positive. Have a great day!

[gomer]

Look up Meniere's.
I have had this for many years

[loopey]

Same Feeling

I have the same feeling, I think. It feels like I am walking on a boat. Sometimes it upsets my stomach but mostly just makes my balance bad. I have this all day every day and have had it for 4 years. It isn't vertigo. I went to several doctors and it is CNS dizziness and Valium doesn't help and my neuro says there is nothing he can give me for it.

I use a cane but even with that walking in crowded areas is very difficult. I feel like a blind person because I have to look straight ahead or down at the ground and miss everything around me.

It has made me feel hopeless and I feel sick every day. I just started to take meds for high blood pressure and the side effects are dizziness. So it got worse. I have no options left. I am sorry you have the same type of dizziness. It is horrible.

[Kimba22]

I have the same feeling, I think. It feels like I am walking on a boat. Sometimes it upsets my stomach but mostly just makes my balance bad. I have this all day every day and have had it for 4 years. It isn't vertigo. I went to several doctors and it is CNS dizziness and Valium doesn't help and my neuro says there is nothing he can give me for it.

I use a cane but even with that walking in crowded areas is very difficult. I feel like a blind person because I have to look straight ahead or down at the ground and miss everything around me.

It has made me feel hopeless and I feel sick every day. I just started to take meds for high blood pressure and the side effects are dizziness. So it got worse. I have no options left. I am sorry you have the same type of dizziness. It is horrible.

I'm sorry, Loopey. Not much luck with either Valium or Meclizine here, either for CNS dizziness. Steroids helped once when I had severe vertigo.

Dizziness is a sensation of lightheadedness, faintness, or unsteadiness. Unlike dizziness, vertigo has a rotational, spinning component, and is the perception of movement, either of the self or surrounding objects. Disequilibrium simply means unsteadiness, imbalance, or loss of equilibrium that is often accompanied by spatial disorientation. Read more here: http://vestibular.org/node/2

[doglover815]

Thank you for responding

I have the same feeling, I think. It feels like I am walking on a boat. Sometimes it upsets my stomach but mostly just makes my balance bad. I have this all day every day and have had it for 4 years. It isn't vertigo. I went to several doctors and it is CNS dizziness and Valium doesn't help and my neuro says there is nothing he can give me for it.

I use a cane but even with that walking in crowded areas is very difficult. I feel like a blind person because I have to look straight ahead or down at the ground and miss everything around me.

It has made me feel hopeless and I feel sick every day. I just started to take meds for high blood pressure and the side effects are dizziness. So it got worse. I have no options left. I am sorry you have the same type of dizziness. It is horrible.

Hi,

Thank you so much for your thoughtful response. Much respect to you for going through this for such a long time, especially without any relief. This is quite a nasty disease, isn't it? If you don't mind me asking...do you work? I have a very physical job and am currently on medical leave but I can't imagine returning to work - even if I had a sedentary job. I want to return more than anything but I don't know how to cope with my other symptoms along with this new one. I hope this message finds you well.

[loopey]

Not Vestibular

I was so desperate for relief that despite 3 neuros saying it was CNS dizziness from MS I went to yet another ear, nose and throat specialist 2 weeks ago. He was very thorough in his exam and stated firmly that my problem is NOT vestibular. I actually cried because I keep hoping something would finally help.

I am retired, thank goodness. I do not think I could work with this level of dizziness but can't say for sure. I was an executive and sat a good amount of time at work so it may have been OK. I can't drive though and tried to ride a bike at the beach and crashed two times so gave up that idea. Noise also bothers me a lot. Yes, it is terrible and I sincerely hope that you improve.

Since this started for you with a flare 2 or so months ago it is possible for it to improve for you. I pray that is what happens!

[doglover815]

I can relate!

I was so desperate for relief that despite 3 neuros saying it was CNS dizziness from MS I went to yet another ear, nose and throat specialist 2 weeks ago. He was very thorough in his exam and stated firmly that my problem is NOT vestibular. I actually cried because I keep hoping something would finally help.

I am retired, thank goodness. I do not think I could work with this level of dizziness but can't say for sure. I was an executive and sat a good amount of time at work so it may have been OK. I can't drive though and tried to ride a bike at the beach and crashed two times so gave up that idea. Noise also bothers me a lot. Yes, it is terrible and I sincerely hope that you improve.

Since this started for you with a flare 2 or so months ago it is possible for it to improve for you. I pray that is what happens!

I'm sorry you can't find any relief and that you had a discouraging doctors appointment. It really is an awful symptom that impacts every aspect of your life. I myself have bounced around to different specialists desperately looking for a solution. My last appointment totaled almost $800 only to be told nothing could be done. How frustrating...both emotionally and financially!

I appreciate your kind words and your prayers. I pray you are provided with strength to manage your symptoms!

[AriD]

So sorry for what you are going through. I've had central vertigo and proprioception issues for many years. Between the two, I can, at its most severe, have nystagmus/ severe vomiting/dizziness/ room spinning and inability to stand/ walk. High doses iv Valium has gotten this under control then to high doses meclizine tapered slowly down ( high dose steroids too).

At minimum, I have weird dizziness sensations with feelings like the floor is sideways, I'm walking uphill when I'm not, falling backward suddenly, etc. with nystagmus too. Little things like trying to walk on my toes or following the doctors finger with my eyes sets off nausea and dry heaves instantly. Also have tinnitus in my left ear 24/7 for 21 years now.

I finally went to a noted otoneurologist at MGH who did a few tests and I got so dizzy/nauseated and off balance that he stopped the exam. He said he didn't need to make me sicker because he already had the etiology. He says I have lesions in my cerebellar pathways that are causing all these symptoms. He said the only thing that might help is high dose Phenergan and it would have to be so high that I essentially would be worse off than dealing with symptoms. Way too sedating at the dose I would need.

So I deal with it unfortunately. PT has helped to keep some symptoms less debilitating. Might help you. Hope you find a solution to your symptoms. Take care

[doglover815]

So sorry for what you are going through. I've had central vertigo and proprioception issues for many years. Between the two, I can, at its most severe, have nystagmus/ severe vomiting/dizziness/ room spinning and inability to stand/ walk. High doses iv Valium has gotten this under control then to high doses meclizine tapered slowly down ( high dose steroids too).

At minimum, I have weird dizziness sensations with feelings like the floor is sideways, I'm walking uphill when I'm not, falling backward suddenly, etc. with nystagmus too. Little things like trying to walk on my toes or following the doctors finger with my eyes sets off nausea and dry heaves instantly. Also have tinnitus in my left ear 24/7 for 21 years now.

I finally went to a noted otoneurologist at MGH who did a few tests and I got so dizzy/nauseated and off balance that he stopped the exam. He said he didn't need to make me sicker because he already had the etiology. He says I have lesions in my cerebellar pathways that are causing all these symptoms. He said the only thing that might help is high dose Phenergan and it would have to be so high that I essentially would be worse off than dealing with symptoms. Way too sedating at the dose I would need.

So I deal with it unfortunately. PT has helped to keep some symptoms less debilitating. Might help you. Hope you find a solution to your symptoms. Take care

Hi AriD,

I am so sorry to hear about your symptoms. They sound absolutely awful! How frustrating to deal with that on a daily basis. I can't even imagine! I feel like I can't tolerate my symptoms so I don't know how you cope. You must be a fighter!

Do you have trouble reading? I have new vision dysfunction since my last flare and trying to follow the words while understanding what I am reading makes my vertigo worse. Its like I can't track the words or something. My current job (which I am on medical leave from) is physically demanding and I think I might need to switch to something more sedentary due to the vertigo, but I can't think of a sedentary job that does not involve a lot of paperwork/reading/computer use. Do you mind if I ask if you work?

Thank you very much for responding to my message. I hope the vertigo is going easy on you today!

[AriD]

Hi dog lover

Thanks for your support. I do have a physically demanding job as a SICU RN. I've been out of work almost nine weeks now but still hoping to make my way back. My doctors have been trying to push for disability but I still want to try. This is my second relapse this year but last was out only about a month. Everything's getting much harder.

I don't have vision trouble except nystagmus when the vertigo occurs. I try to avoid anything that could stimulate it. No fast turns of my head or body, always look at the ground when I walk, avoid crowds because all the movement around me can really set it off.

Try identifying what actions make it worse so you can avoid them whenever possible. And as I said above PT might be helpful. What is your professional background? Maybe we can think of jobs that you could do without stimulating the dizziness and vertigo.

I hope things improve for you. I know how awful it can be.

[doglover815]

I feel like I was meant to connect with you!

Hi dog lover

Thanks for your support. I do have a physically demanding job as a SICU RN. I've been out of work almost nine weeks now but still hoping to make my way back. My doctors have been trying to push for disability but I still want to try. This is my second relapse this year but last was out only about a month. Everything's getting much harder.

I don't have vision trouble except nystagmus when the vertigo occurs. I try to avoid anything that could stimulate it. No fast turns of my head or body, always look at the ground when I walk, avoid crowds because all the movement around me can really set it off.

Try identifying what actions make it worse so you can avoid them whenever possible. And as I said above PT might be helpful. What is your professional background? Maybe we can think of jobs that you could do without stimulating the dizziness and vertigo.

I hope things improve for you. I know how awful it can be.

Hi AriD,

I almost fell off my chair when I read your response (that isn't too hard to do these days . I am also a nurse and I work on a busy medical-surgical unit. My last flare left me with vertigo, poor peripheral vision in my left eye, and cognitive dysfunction. This is the one that scares me the most because I do not feel like I can multi-task and problem solve which of course is necessary for a nurse. I have always pushed through my medical problems but I am at a point where I am concerned my performance would put patients at risk. I love my job but I am not willing to sacrifice great care. I have considered moving into a telephone triage position but I don't even know if I can due to my cognitive problems and vertigo in front of a computer screen and while reading. I would prefer direct patient care but I guess I am not in a position to be picky.

I have been on medical leave with no option for LTD. My next step is to make a big decision...what do I do about my career that I love so much. Much like you, everyone around me thinks I need to move on from nursing. I am just not ready to have MS take away something so special. It is essentially my identity. My neuro doesn't think I should return to a job in the medical profession. I am having a neuro cognitive evaluation and we will re-evaulate after we have my results. She believes I qualify for disability but that it would be hard for me to get approved because I "look so good." I'm also relatively young so that does not help my case. In the meantime she wants me to start thinking of careers I would be interested in. I can't think of one. I am a nurse and it is who I am. In addition, starting a brand new career would mean taking a huge pay cut. So where does this leave me?

Crowds, movements, distractions, loud and unfamiliar environments definitely trigger my vertigo. I try to stay home as much as possible but that isn't ideal either. I wish I could do something working from home so I could pace myself and work in a quiet environment. Writing this response takes forever, I have to take breaks. When I am done I will have to close my eyes for 10 minutes just to try to recover. The thought of working in any capacity terrifies me. I have always had a strong work ethic so this has been an unwelcome adjustment for me.

I am so sorry you have to go through this and I applaud you for doing everything you can to return to your job. Thank you for taking the time to listen to me vent. I know you are going through your own difficult times, but please know I am here for support. I hope you heal and are able to return to work!

[dastardly]

Hi Guys, doglover815 my wife gets these symptoms she has ( Benign paroxysmal positional vertigo (BPPV) ) she takes stemetil daily there is an exercise you can do for this to help good luck hope you feel better soon Craig

[doglover815]

Hi Guys, doglover815 my wife gets these symptoms she has ( Benign paroxysmal positional vertigo (BPPV) ) she takes stemetil daily there is an exercise you can do for this to help good luck hope you feel better soon Craig

Thanks for your response! Sorry your wife has to deal with this but I'm glad there is something she can take for relief.