I've had bouts of vertigo over the years. But it's been pretty steady, off and on, since March. Meclizine has become my best friend. 😜 Mostly, it's mild...that light-headed, dizzy, off-balanced feeling. Sometimes nausea accompanies it and there are days it is bad enough to keep me home. I wouldn't even contemplate driving on those days.
At its worst, I've been laying in bed and feel as though the bed is trying to flip me over and out (Picture "The Exorcist). I clutch the sheets, trying to remain prone on the bed as the bed seems to toss from side to side.
But last night was different. Has anyone felt as though they were laying on their back in the center of a merry-go-round (like the attached pic) and someone is running alongside it, spinning it round and round? Just wondering. This is new for me.
Thank you!
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WAshingtongirl
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Oh Tutu, you need to get that checked out. My daughter suffers from vertigo and she often has dizzy spells, but to feel like you are on a merry go round, you need to get it sorted. I think I need a special prayer book just for this forum, so many of us are experiencing weird things with this ms. We should maybe all write a helful book together and pool our experiences to share with the world. It is time ms had as much recognition as cancer, and make the world see how many people are suffering with this awful complaint. Take good care my friend, big hug, Jimeka 🌈 🙏
Thank you jimeka . I see my neuro soon, but she is aware of the vertigo. I went through PT for it in April. It's just something I'm living with. Last night's sensation was a variation though. At least I don't get bored! 💕
I have to keep my head elevated every night. Seems I only get about 3-4 hrs of sleep at night of sleep lately.
Tutu hope you're feeling/sleeping better (easier) soon. Vertigo is a rotten thing to have. I can't drive anymore (neuro's order) because of "dizzy spells". My eyes have to be closed or have to be covered whenever I'm in a car... uh, let me just say this: look out here comes the pea soup!
I agree with everything you say. I was diagnosed with vertigo years ago then turns out is has been part of the MS I didn't have diagnosed until a year (or so) ago.
WAshingtongirl Hi Tutu, yep, it happens maybe, once a month maybe??? stopped keeping track. Doctor doesn't care because inconsistent, no tests left to run, had for years, so....I just lie still till it passes. But, wow, what a horrible feeling I agree!! Been happening for years (15, don't know - diagnosed 6/16, first neuro said I was misdiagnosed with fibro in '99 but was MS, current neuro said I should have been diagnosed when 17-now 70-due to temp blindness), so the vertigo was just another symptom blamed on hypoorthostais BP or something (unregulated low BP). Sometimes I can just turn over in bed, and zoom! here goes the merry-go-round! I slowly return to my back and become a zombie until it passes! And BP regulates itself. One cardiologist tried to explain that there is a "call" for blood to heart and our MS damaged communication switchboard decides to not send correct messages! Relates to BP, HR, emotional response, verbal response, one foot in front of another, one finger hitting the right key, one hand holding onto a cup, one arm not removing itself from hot oven shelf (I have a ladder of burn scars on right arm, I forget to put oven mitt on) (My husband gets mad and says why didn't you call me to take that out of the oven? Well, if I could have remembered to call you, I could have remembered to put the oven mitt on! And if I could have remembered to do that, I should I have been able to remove my arm immediately upon touching the hot shelf in the first place!!!!!! (@#$#$%#$#) (They just don't get it!!!!) You gotta laugh at their lack of logic!!! Been using the same tv remote for years; volume too loud, "please turn down" ; turned up instead, "you turned it up instead of down" Really??? you think?? I am deaf and didn't realize that!! Not, No I am not giving it to you to do it right, I will click it the opposite direction!! Cracks me up!! Our loved ones thinks we turned into 3 year olds instead communication-brain-challenged individuals with slow responses!!!! My 2017 motto?? Cultivate the ability to say silly responses to those who treat us like we have lot intelligence rather than lost automatic responses! Someone asked if I knew what I did with the lid to the butter dish? Yep, I might be sitting on it - I will check there! (If I knew I wouldn't be in the bedroom trying to find a quiet moment before I explode from the household noise!) Have you all seen the Chronically Ill Cat??? The jokes he says are hilarious!!!!
Oh agapepilgrim, I know I shouldn't but sorry, I did. I laughed and laughed, you should direct a film on ms humour, thank you I needed that this morning. I know I did too much yesterday and I am as stiff as a board, I guess we never learn, happy 2017 to you and yours, how long do you think your new resolution will last, blessings Jimeka
jimeka my resolution will be as inconsistent as the rest of MS - if my brain works to be funny, I will make a joke; if PBA (or PDA or PTA or whatever that uncontrollable motion symptom thing is called) kicks in, I will become ice cold in my voice and say some retort like I am not brain dead, I didn't let the worm crawl in my ear, I am having an MS moment, so stop treating me like I'm stupid! (then my husband won't speak to me for a few hours until I apologize for allowing myself to become angry even though allowing it was as beyond my control as stopping the jerking of my leg when the good old doc taps it with his hammer, but the beat goes on, and we are now known as MS Warriors who fight a battle far more secret and covert than the Russians controlling who Americans voted in as President (wasn't that an amazing mind control they did to us???). Let's see, where was I? My #2 neuro, in his notes to my primary, said in his 2 hour consultation with me I had a "tangenital conversation" with him. Had to look that one up to make sure it didn't mean I was focused on my genitalia, and found it meant I couldn't focus on one topic, like I am doing here. Well, duh! I have lesions in the exact part of my brain that controls the communication to the rest of the brain and CNS, so if my words, or brain, choose to turn left instead of right, don't blame me, blame the MS! No different than one's foot dropping instead of going forward, but because my problem cannot be seen outward, I am told to stop, breathe, and stay focused! Okay, the next time I am having a vertigo attack, or my arm has a tremor attack, or sudden, forceful diahhrea is approaching, I will just stop, breathe, stay focused and all will disappear! I think I have a new calling for 2017 - reply to everyone's horrible experiences with neurologists, excruciating painful incidents, embarrassing situations of cognitive failure in public, and treacherous results of uncontrolled inappropriate emotions with my own experience of the same with a Robin Williams' perspective!! (I have the faith and peace of Jesus with me every day, and the truth of a better home with my Father someday not to give up as he did, but I do understand why he gave up.) One of my many shrinks along my Life Pathway told me only my sense of humor has kept me functional and mature (wonder what that means, anyway)! The greatest joke in the medicine field for us is that they wait until your body has suffered for 50 years, diagnosing you from everything from hypochondria to a dormant cancer they can't find yet, to, OH, you have MS! But, then I found all you guys which has made my life so much more tolerable, because misery loves company!
Thank you for writing this! I'm smiling from ear to ear! You definitely should either write a book or movie! With your sense of humor and everyone else's here we're sure to get people to understand what MS really is! If not, you and I can give them a sermon on PBA! (Why Danny Glover isn't telling about PBA I'll never know, he's the reason my neuro and I figured out...) sorry went off on a tangent. Again thank you #agapepilgrim
You cracked me up agapepilgrim ! Thanks for the chuckles. I'm anxious to hear some of your 2017 funny responses. 😁
I'm fortunate. I have a great neuro. She attributes the vertigo to BP drops due to autonomic system involvement. Even had me go off my BP med for a while to see if that helped. It didn't.
When I told my husband about this latest vertigo sensation, he said, "I used to lay down like that and every other position on the merry-go-round while others pushed it. It was fun!" No, they don't always get it. 💕
@Tutu, vertigo can be crippling and terrible. I had my first episode of it at 20, had no idea what it was but couldn't move my head on the pillow even a fraction of an inch without setting off the sensation you described so well (the merry-go-round). I made the mistake of walking to the bathroom and back--a bit of a walk but usually it was no problem. I hardly made it to the bathroom and didn't make it back. I blacked out and fell face forward and knocked out 4 front teeth. Ever since then I've had a 6-tooth bridge in my mouth. Vertigo shouldn't be ignored, and if it's bad you shouldn't try to soldier on.
Hi agate, hope that you haven't had vertigo over Christmas. I am getting to understand it more, reading all the posts. My 92 year old father in law has it, which he takes medication for, and fortunately that seems to control it, it's not something that anyone around me makes an issue of, but after reading what agapepilgrim, yourself and Tutu go through, it definitely is not to be taken lightly. Blessings Jimeka and all the best for 2017
agate , I'm sorry about your fall and history with vertigo. Having your teeth knocked out took quite a fall! 😬 Mine, for the most part, is mild. It probably wouldn't even be classified as true vertigo. I tried once to get up with the bad vertigo, but was able to make it back to my bed without falling or passing out (as I felt I would do). I guess I'm fortunate I only get it bad occasionally. Thank you. 💕
I understand a few years ago it hit me suddenly while I was at work full blown and I had to drive home,it was scary . Then I learned about the ways to deal with it And how to prevent it.
Birdymom3 Hi l almost missed ya there☺ l wanted to ask you how you managed to deal with your vertigo? I hate how it hits out of the blue 😑. Luckily I haven't fallen yet. And my dog will come and stay with me until it passes 💕
Welcome to our wonderful site BTW ☺. I hope you find it friendly and informative. But most of all Supportive!!
If you try Dramamine/Meclazine, please do coconut pulling if you take it to counter the drying effect on your gums.
Otherwise you can take a lot of damage to gums and teeth.
Things to try for vertigo include manganese, an essential nutrient. A shortage can include side effects of rapid heartbeat, increased blood pressure, depression, problems with muscle coordination, seizures, dizziness and vertigo. Something to ask the doctor about.
A clinical trial found that ginger may ease vertigo. 1000 mg at first and up to 500 mg every 4 hours. Some say limit it to 1000 mg a day though. Or make ginger tea from fresh ginger or even try ginger ale if it's made with real ginger.
But ginger is blood thinning - don't take within 2 weeks of surgery, if pregnant, or if you have gallstones. Also, take ginger with food so it doesn't upset your tummy.
Another herb that may help is ginkgo biloba which improves circulation to the inner ear and brain.
Butcher's broom is a vasodilator and improves circulation, also.
Cayenne pepper with capsaicin improves blood flow to the brain and inner ear.
Ginger may help. Up to 1 gram of powdered ginger or eating candied ginger or ginger tea.
Gingko biloba may also counter vertigo - 60 to 240 mg.
Manganese deficiency is common and can cause vertigo.
Foods with manganese include whole grains, nuts, leafy vegetables and tea.
You can also get supplements.
One of the main groupings of exercises to better manage vertigo is vestibular rehabilitation. It entails moving your head and body in certain directions to actually cause dizziness. These exercises basically help retrain your balance system. For best results, do them twice a day.
A bed is probably the best location to do most seated exercise. Plant your feet firmly on the ground in front of you. Then, lie back. Allow the dizziness to subside and then sit up again. Repeat two to three times before moving on to the next exercise.
Bend forward, bringing your head about halfway to your knees. Allow the dizziness to subside and then sit up again. Repeat two to three times before moving on to the next exercise.
Remain in an upright, seated position and turn your head from left to right five times in a row. As you allow the dizziness to subside, focus on an object to your right. Now turn your head from right to left five times in a row. As you allow the dizziness to subside, focus on an object to your left. Repeat three times in each direction.
Still remaining in an upright, seated position, move your head up and down five times in a row. As you allow the dizziness to subside, focus on an object directly in front of you. Repeat three times.
In this same upright, seated position, hold a finger out in front of you. Focus on the tip of your finger and then turn your head to the left and right five times each, alternating from one side to the next. Stay focused on your finger. Allow the dizziness to subside and then repeat three more times.
Thanks, katepoet . You shared a lot of information. It may take me a while to digest it all. 😉 We have excessive manganese in our (well) water supply. The exercises sound a lot like those the PT did with me earlier this year. I may try yours while sitting on the bed--but not when the vertigo is bad. I appreciate the suggestions. Thanks! 💕
From what I read, the exercise may only work if you have experienced a physical trauma that would have put things out, but might be worth trying anyway.
Sorry if it was patched together. I run a support group for folks who are chronically ill and end up with documents like this sometimes, after researching an issue.
If there's excessive manganese is in the water, it could be a symptom of toxicity from it. Might be worth a blood test or hair analysis to see your level. Too much manganese can cause neurological damage.
Easiest place to find me is on facebook if I can ever be of use. Kit Minden
WAshingtongirl & agapepilgrim do Epley maneuvers help? Often used for benign positional vertigo due to otoliths. Can google for description. PT usually teaches this.
My neuro hasn't mentioned this. I am aware of it though. My 78yo neighbor just went through treatment for it. Poor thing. She's really had a rough time with true vertigo for a couple months now. Mine isn't that bad. I don't have that lightheadedness every day, but almost every day lately. Doc said it wasn't sinus, etc., but definitely autonomic system involvement since I have neurogenic bladder and vowels and thermostat problems. She said it was all related-autonomic. She's also sent me back to my rheumy, trying to figure out if it is all MS or lupus-related, or both. I really am fortunate I suffer with the really bad, true vertigo, seldomly. I'll watch the videos online. My PT at the MS Clinic worked with me in April, but I didn't do any reclining exercises. Thanks, erash . I really appreciate it. 💕
While Epleys help for BPV (benign positional vertigo) I am not sure it would help for a central vertigo (autonomic) but u can have lovely other things in addition to MS 🙁
They tried to tell me I had lupus. Maybe? But MS can cause false + lupus lab markers.
Really erash ? Lupus isn't what I want either. But confirmed autoimmune liver disease a year ago with tests and liver biopsy. Anti-dsDNA is 3270 (>200 strongly positive), anti-dsDNA salt/avidity high pos, and chromatin ANA strongly pos too. Liver prob may be due to 4-month UTI last year. Docs think it may be lupus-related. Who knows? On plaquenil for a year now. Neuro and rheumy considering Imuran to slow both MS and Lupus down. Your thoughts? I'm always willing to listen to another expert opinion. Thanks, Liz. I hope you don't have Lupus in addition to MS. 💕Dawn
WAshingtongirl ah man! So sorry all of those complications. Autoimmune diseases (lupus, MS, etc.) often do share a host.
I don't have enough symptoms to convince me that I have lupus. I refused the Plaquenil even if it is a fairly well tolerated drug. But true lupus should be treated. And sounds like your docs are collaborating for your best interest. 💕
My neuro (at MS Clinic) is great. She is the one who suspected autoimmune liver disease. I have Hashimoto's and she said it isn't uncommon to 'get' additional autoimmune diseases (though the liver one is rare). She had me see a liver specialist and a rheumatologist. Doctors aren't as they used to be. The liver doc, my PCP and my neuro want the rheumy to treat the autoimmune liver mess. Rheumy say liver doc should treat the liver while he treats the Lupus. Whatever happened to one doc treating it all? Medicine has become so specialized now.
WAshingtongirl lm so sorry your going through this.😞 Merry go rounds are supposed to be fun. Having vertigo stinks. Ugh. But what's happening to you doesn't sound good at all. I suggest if it continues that you see your PCP or Neuro soon and not wait for your appt. Or at least call him and see what he says about it. There is no reason to suffer if you don't have to.
Thanks, Jesmcd2 . I slept like a baby last night. Overslept, actually. So it seems I am back to 'normal' again--whatever 'normal' is! 😃 But that sensation was a new one for me.
How are you???? Are you feeling better? I hope so. Take it easy and rest. We miss you, but want you 'well.' 💕Dawn
@Tutu, I am very happy to say I never had vertigo. I do have balance issues that can be pretty severe so I often feel like I'm going to fall over to the left to the right or to the back but nothing spins on me thank goodness. Not unless you count my younger years when just once or twice i over-indulged and found everything in the world spinning. (LOL and then yes, nausea accompanied that sudden and short lived bout of vertigo too!) Just a bout or two made me swear off of never doing it again.
Seriously though if it keeps up this severe to Tutu, you should get back to the doctor asap. Or perhaps even a trip to the emergency room is warranted. I can't imagine feeling like you're strapped to a merry go round for hour after hour! You are the best advocate for your own health. Don't let anyone shove this concern aside as minor and insignificant and unworthy of being treated. If it's this bad make them go after it tooth-and-nail until you find a better answer. As always keep us informed. You're not the only one in this group that suffers from vertigo. I'm thinking about you and can't get the image of being strappeda to a merry-go-round out of my head. Oh my gosh I don't know if I could do that. You are such a strong and amazing woman Tutu. I am proud to be part of your extended family and to call you my friend.
Remember to keep your chin up and your stomach down. LOL!
Oh Fancy1959 , you had me chuckling at 'keep your head up and your stomach down.' 😁 Hard to do when you have to walk with your 👀 glued to the ground! Like you, my balance issues make me very careful. I think I miss a lot of the world around me watching the ground when I step. Oh well...that's totally off subject and another topic. 😉
My lightheadedness/dizzinessis the major cause of my balance issues. You don't have anything like that? Interesting. I just assumed everyone with balance issues had the same head sensations I do. MS is so unpredictable!!!
Thanks, Fancy, for all you shared. I'm happy to be a part of this family and to call you my friend, too. 💕Dawn
Thanks Morllyn . I assume you've suffered with it too. I'm sorry.
Any new yard art projects lately? (I do hope I got that right and I didn't mix you up with someone else. Sorry if I did!) I assume Christmas prep and the holidays probably kept you busy enough! 💕
No new projects as of yet. Spring will probably bring out my creative juices though.
I had a bad bout of positional vertigo, some years ago. Went to the er and the doctor there kept trying to get me to lie down. I tried to tell him that I would throw up if I lay down but, he would not listen. He pushed me down on the bed and I promptly threw up on him. After he got over the shock, he laughed and diagnosed it as positional vertigo.
Really? Wow, that's impressive. Don't think I could go gluten-free though. I love bread too much. But if the vertigo became consistent and bad all the time, I guess I'd seriously consider it. Thanks Dominospaz . You've given me something else to think about.
I find that I can curb a lot of my vertigo/dizziness by resting a half hour or so in the afternoons. It's not a full proof method but it helps. I too only get true vertigo rarely. Mostly it's just dizzy/lightheaded. It's been bothering me a lot the last week. I have a neurologist appointment tomorrow and was going to ask him about it but they usually don't do anything. I took the anti-seizure med Topomax for awhile. But stopped. I'm not sure how much it helped. Resting in the afternoon has seemed to help mine the most. Good luck! Vertigo is the worse!!!
P.S. I hope your neuro is able to give you more answers. I remember you are still undiagnosed...a frightening and frustrating time. I do hope he is able to attribute your symptoms to something other than MS. Will be praying...💕
Happy new year to you Tutu!!! I like my new neurologist and this is my second visit with him. I figure each visit will take me closer. This board has really helped me by realizing I needed to ditch neurologist #1 and helped me to realize how often I should be going to ER. I have nothing to go for now but if I would have accepted reality a long time ago I probably would be a heck of a lot closer to them figuring out what's wrong with me
I had an epiphany about why I've had such a hard time. Telling my doctors. Telling my family. Going to ER. It's because it means facing Its not how I've thought about myself since a small child. I've always taken care of others (literally, I had a traumatic childhood and had to stay home from school as early as 6 to care for my 3 year old sister). Going to ER or telling doctors or family would undermine the only thing I knew about myself. I'm a caregiver, I don't NEED caregiving. It's been a bitter pill to swallow for me.
Hope your 2017 is fabulous!!! And hope you can get a handle of your vertigo. It's is truly awful!
Tutu - I feel for you I suffered from middle ear problems when I was in my 30's i I worked in an air conditioned office. One morning I got out of bed to go into the ensuite to have a shower and I walked straight into the wall and I thought to myself what did I do that for I took a couple of steps back and had another go and walked straight into the wall again. My late husband was up and I yell out to him and he must have known by my voice that something was wrong he came running out to see what was wrong. He rang our GP and he told him to take me straight up to his surgery he examined me and asked me did I have any fluid tablets at home and I said no as I have never been keen on taking any sort of pills. He gave the script to my husband and said get this filled out ASAP which he did - he told me to go home to bed and to take one morning, noon, and night with a mouth full of water and have no other fluids for two days and to stay in bed which I did I would just have sips of water during the day to wet my lips. I didn't feel like eating anything as I felt sick - I went back to work a day or so later another lass that worked in the newsroom was missing and I asked where she was and I was told that she was very sick. when she came back to work after a month I asked her what was wrong' and she told me she had exactly the same as me her doctor didn't order fluid tablets and she could not lift her head off the pillow for days she was so nausated. I felt so sorry for her as I know how I felt with it and I wasn't near as bad as her. The fluid tablets must have dried up the fluid in the middle ear. If I ever feel a little giddy these days I put a couple of drops of Hydrogen peroxide in my ear and if it fizzes you know it is working - I have hardly had any problems all these years - Peroxide is a great infection fighter.
That was an awful virus, JMTS . It sounds like your doctor did the right thing. You were far more fortunate than your coworker! So happy you came out of it unscathed. 💕
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MS and Sjogren's Syndrome
So frustrated over DMT & symptoms 
