I belong to another dizzy forum but i had been meaning to post here for the longest time…so i am finally doing it.
The way my dizzy condition first started was approximately in 1988 i was going thru a very intense stressful condition at my job and this went on for a number of months. Anyway…sometime in 1989 i began to wake up from sleep in the middle of the night with the room spinning and i would literally crawl to the bathroom and vomit. Then sit on the couch for about an hour and try not to move my head for fear of more Vertigo. I would then proceed to get back into bed (very slowly) with my head laying on a couple of stacked pillows. I thought maybe i had gotten food poisning. Within 3 days i was back to normal and return to work. Then 6 months later the same type of episode would reoccur. I went to my general doc and he said i probably have an ear infection. I experienced approx 2 vertigo episodes (waking up from sleep late at night) from 1989-1991. Then in 1992 i had another severe waking up from sleep with room spinning and having to vomit. I adventually walked over to the couch to keep still and started to notice a Rocking Motion Inside my head and it would not stop. Went to the gen doctor and he referred me to a psyciatrist and was diagnosed with Panic Disorder. I was prescribed Prozac and a small dosage of Xanex. I continued to have the rocking motion sensation so the psyciatrist increased the Xanex. That helped to decrease the motion so it wasn’t too over whelming. After 9 months i told the doc i wanted to be off the Prozac and also decided to see another Therapist. The new doc also diagnosed me with Panic Disorder. I tried various anti-depressants for a couple of years (mostly ssri’s) to no avail. Xanex was the only medication that gave me some help.
Decided to make an appoint with the Stanford Ear Instititute in 1998. Had to be off all medication for the next day appointment which was difficult…but i did it. Went thru a series of tests. The last test for the day was where the tech person puts warm and then cold water in one ear and then the other. She began with i believe the warm water in my right ear and it brought on severe vertigo and i began to feel sick to my stomach…i told her to please stop the test but she said just a little longer and i said No…please stop the test so she did. I became very nauseated and vomitted. So the test was incomplete. The tech person said only 3% of patients become very ill with this test. The diagnosis i received was Inner-ear Dysfunction with Anxiety.
Continued with rocking motion and occasionl vertigo …sometimes having to leave movie theatres or resteraunts because the motion would overwhelm me and i would panic. But the following week i would always return to the movie theatre or resteraunt because i didnot want this to prevent me from going out of the house and becoming phobic. I adventually quit my job at the phone company in 1999 and moved to the Los Angeles area and rested for a couple of years with a close friend. Adventually taking a few classes and part-time job with much less stress. I began to reduce the daily Xanex…very slowly and making little improvements here and there. In March of last year i decided to see one more doctor regarding this condition. I visited Dr. Robert Baloh at UCLA…he and his assistant read my dizzy history before my arrival. While in his office he said i know what you have…you have “Migraine Equivalent”…or “Migraine Variant”. I have what is the Silent Migraine w/out pain. My head has a tenseness throbbing like sensation inside with a wave-like motion going back and forth. Like water swishing in every which way. I asked Dr. Baloh if it’s possible this condition started out as BPPV and he said there is a possibility. He believes this condition is due to a Chemical Imbalance. So he recommended that i start with Elavil beginning with 5mg (the goal will be to reach 100mg) because i am very senstive to medication. Then increasing by 5mg every month or so. At 50mg i began to experience a small amount of improvement. For example i don’t think about the dizzy condition as much and appear to have a little more energy. Also watching my diet…consuming much less caffeine, chocoates, msg, alcohol. The vertigo has dropped off…but i still have a fair amount of Motion inside my Head. Yesterday i finally reached the goal of 100mg…so within a month i will decide whether to stay on this med or change to something else. By the way i have been Motion Intolerance all my life. When i was a kid my father would drive us thru the Yosemite mountains andmy dad would always have to stop the car so i could vomit. The narrow curvey roads overwhelmed me. Also, over the years having to be very careful what amusement park rides i went on. Also became nauseated on small boats.
So after 15 years of this dizzy condition this is where i am at. I continue taking a very small amount of Xanex daily so that i can atleast hold a job and have some quality of life. Watch my diet and stress. I work only part-time with a job that has much less stress. My hope is that with Elavil or some other anti-depressant will adventually take me off Xanex completely.
If there is anyone who has a similar story please share.
I also take Xanax .75mg daily and that helps somewhat. I’ve had this condition going on 13 years and have only recently found out about MAV and diagnosed with it. I don’t think I was ever motion intolerant but having said that I alsways had an aversion to amusement rides.
I had migraine with aura since my early teens, I’m now 40. Since my 24/7 dizziness I still get an aura but not the headache! In fact I feel like I am experiencing an almost constant low-level aura. Hard to explain except things look wrong to me. I can’t handle light of any kind and always wear sunglasses. Fluro is espeically bad! I also can’t watch movies where the camera is hand held and shakey or moves around a lot. Nor can I watch kids jump up nad down on trampolines and the like. I have two kids… I tend to look at the ground and sometimes feel a strong pull to the right hand side. I usually feel better when I’m moving rather than sitting or standing still. One of my big problems is constant fatigue and the anxiety that seems to go hand in hand with this disorder.
I’m now on Prothidan but haven’t had any results from it. I confess to eating lots of chocolate and haven’t given this habit up yet! I hope I will find a med that relieves me of this misery after such a long time. All the best to you.
I have never had the typical painful migraine or even an Aura. I do get an occasional headache possibly becauses of stress or skipped a meal. Sounds like you have been dealing with this condition for a long time yourself. What is really bothersome to me is Crowds…particularly at Malls. It aggravates the dizzyness. I also have trouble with watching a movie where the camera is shakey. If i go to the movies i cannot sit too close. Watching a young kid play the fast pace video games are very difficult for me…so i just turn my head. When i am flying on a jet…and once the jet is up in the Air trying to reach its altitued and begins to make a right or left turn it aggravates my dizzy condtion if i look out the window so i generally look straight down the aile towards the front of the plane.
Dizzy, rich chocolate & lots of sugar really messes me up so i would suggest that you keep notes everytime you have chocolate. Take notice if the dizzies increase. I only allow myself 1/2 cup of coffee per day because of caffeine. Years ago i use to drink up to 4 cups a day. Also…Stress is another thing i have to watch.
Wishing you improved health too.
Hi Joe & dizzy
Your stories sound v. similar to my own. I’ve had my condition for about 11 years and started much like yours - waking in the night with the room spinning and it all started completely out of the blue. I must say I do have lots of headaches as well as the dizzies and I also have the constant rocking sensation you describe. I’ve never developed the hearing loss associated with Meniere’s and it is only relatively recently I’ve read about MAV. I don’t take any medication apart from painkillers for the headaches. I avoid caffeine, alcohol and too much stress.
I was medically retired from my job as a nurse about 7 years ago and I’ve been leading a pretty quiet life since. I find myself going through periods of heightened anxiety to do with crowds, supermarkets, travel etc etc. At these times I’ve also considered asking for something to take the edge off the anxiety since that’s almost as bad as the dizziness. What a frustrating condition this is and something I’ve resigned myself to living with I’m afraid since there doesn’t seem to be any real cure.
There may not be a cure at this stage, but there are plenty of treatments. Have you tried any at this stage?
Hi there Joseph and Christina and Andy
I am more often than not feeling off balance or dizzy, but mostly get by with my day to life apart from odd bouts/days. Waking up in the middle of the night with rotational spin is something that has happened to me many times over the past 20 years. I have always been given Stemetil - Prochlorperazine for the treatment of the severe vertigo bouts. I take that if I am getting such bad spin that I can’t operate or move freely without getting spin (I am very, very conservative about taking such harsh drugs). I’ll take half a tablet and just keep still and rest, trying not to move my head around too much - I find it is the only way to deal with my bad bouts, and it doesn’t stop the vertigo but it certainly helps it settle. I suspect they may not even prescribe that in the US! I take Maxalt Melt for the migraines - but usually only at the sign of a really bad one - otherwise I take Solpadeine (paracetomal and codeine) in small amounts - sometimes neither touch the pain.
Like you Joseph - I have problems watching some camera styles on tv - shaking cameras are bad news for me - I went to the cinema a month ago too and I found that the screen overwhelmed me visually and made my eyeballs and the middle of my head really ache - constant watery eyes. I got through it but it wasn’t comfortable. I think it is really relevant that you mention not wanting to become phobic - from someone who came out of being agoraphobic whilst having the migraine and vertigo(I think it triggered it off) that is really important, but of course not easy to control if you are feeling very ill and scared.
Stress, getting dehydrated, not getting enough sleep, relaxation, too much caffeine etc are all things that seem to trigger my migraines and vertigo. There are ways to manage the vertigo and migraines, to minimise the effects or at least control them a little, I think that it takes time to find the right way for you, but when you do, your confidence builds about dealing with them and I am sure that reduces the stress levels too. I still dread each dizzy spell and migraine, but I cherish the days I feel well or have got through the day without a headache or dizzy spell and I do seem to do more now in my life than I used to and my vertigo and migraines are not any better, they are in someways more frequent.
Did your headaches begin before you began waking up with vertigo or after?? I have never had a Classic Migraine Headache…but when i feel throbbing and motion in my head…that is similar to a migraine except it is Silent. I have not had any vertigo episodes in about 3 years (knock on wood)…but i have wondered if people like ourselves had Benign Positional Vertigo at the beginning of this mess and then it evolved into MAV or Migraifne Variant?
What medication are you on? I take a small amount of Xanex and Elavil.
In all the years you have had this dizzy condition have you ever taken anti-anxiety or anti-depression medication to help relieve the motion? The medication that you mentioned in your post…what kind of medication is it? Xanex has been my saving grace over the years. I use to take a moderate to high dosage but now take very little…ususally one tab 0.25mg and sometimes get by with only a 1/2 tab. I have made some improvement over the years but still have a ways to go.
Hi Joseph & Adam
I don’t take any medication at all and haven’t done for many years. I tried anti-migraine tablets some years ago but they just zonk me out and make it hard to function. I seem to be very sensitive to medicines.
The vertigo attacks start before the headaches and prior to getting vertigo I used to get headaches without aura but usually only a few times a year. Now I seem to have them several times a week.
When I was first unwell as a teenager I was put on Serenid d, which is a benzodiazepam, I believe that Xanex is the same drug family. I took them for three months and I had a huge problem with withdrawal effects after that. They tried me out on Prothiaden too for a time, but that itself made my general balance worse. After those two experiences I vowed not to take sedatives or anti-depressants again - though the stemetil is a sedator of sorts but I only take it reactively, not day to day. But clearly if I had consistent daily spin for months on end I would probably take anything (so don’t let my experience put any of you off trying those things). I tend to get short bursts of spin/dizziness day to day, like now it is mid afternoon and I am really tired - my eyes are hurting and I feel quite dizzy and wobbly - tiredness does not help this condition at all, I’m out 7-7 for work so I have to get plenty of rest when I get home so that I can operate otherwise the vertigo takes over.
The stemetil - Prochlorperazine (en.wikipedia.org/wiki/Stemetil) is prescribed to help settle the vertigo, it doesn’t stop it but it makes you feel a lot more comfortable if your movement is limited by spin, you can actually sleep better with it, and sleeping, although you are exhausted with spin, can be very difficult. I always have a strip with me for the occasions I am desperate and where the vertigo lasts for more than a few hours or if I am out.
Hi Mrs. G.
After having this dizzy condition for nearly 15 years and i will admit i have had some improvements. For example…i have not had any vertigo spins in nearly 3 years (knock on wood). I am taking much less Xanex than before…at one time i was taking 7 0.5mg of Xanex per day…the last couple of years i am down to one or less table of xanex per day. I don’t have as much brain fog as i use to have. I havenot left a theatre or resterraunt in many years for fear of vertiog. Have a bit more energy. But i still have the rocking motion…but atleast i don’t need nearly as much medication on a daily basis. The improvement that i have made has been at a Snail’s Pace. Seems like it takes forever to make some slight improvement. I am sorry the Xanex did not work for you. I never worried about becoming addicted. All i wanted was some quality of life back. That to me is the most important thing. I am just thankful that their is Xanex…because if you go back 50 years i don’t believe that medication wasn’t even around and people would just have to live with the dizzies.
One more thing…i do have to watch my diet and stress…that is another reason why i have made some improvement. Too much caffeeine, alcohol, msg…certain chesse, chocolate…all makes things worse. Also…i must get close to 8 hours of sleep and can only tolerate a little to moderate stress. If stress is really bad…things get worse.
I am sorry to hear that you are still having some spins. Have you thought about trying some other type of benzo medication?? There are others.
I am not sure if taking benzodiazepams is something I would want to do now, I guess in some ways I have made big improvements and manage pretty well without them, but if I lost the level of health I currently have and could not get to work etc then I would consider anything.
My doctor had suggested I go onto prophylactics last year on a very low dose - this was to control the migraines that I was getting 6 out of every 7 days. That was linked to work stress though - so I changed jobs and my migraines reduced a lot (in fact that was when I had my last really bad long term bout of vertigo too). Quality of life is everything, you are quite right. We all have to find what works best for us individually but it does take time, just like you say. I think there may be some kind of cycle over a lifetime of the vertigo - with migraines there is (mine have been worse in my 30s just as the evidence shows). I wonder if the vertigo peaks and then drops? Is there anyone on here who has had vertigo from their teens to their elder years, or does it subside a little?
Hi Mrs. G
I have been on 100mg of Elavil for the last 4 days and started having some side affects that is messing with another health condition that i have…actually it started somewhat when i began with 75mg but now it is worse. So the doctor who is monitoring me appears to be loosing interest to help me. We talked this morning and he said to reduce the Elavil to 75mg…i told him how about 50mg and he said that would be ok because we don’t want other health issues due to the high amount of Elavil. This is very discouraging because i have gradually been increasing Elavil and it took me a year to reach the goal of 100mg. I will reduce the elavil to 50mg…and i told the doctor how about me trying another anti-depressant but he said he knows a doctor who has the same condition and believes anti-anxiety medication works best. The doc said to call him in 2 months. Xanex has always been helpful but i might consider trying KLonopin. I wish i had some positive news but seems like i don’t.
Glad to hear that you have made some improvement too.
Sorry to hear that you seem to have hit a hurdle with the medication managing one symptom, but then aggravating another. I can understand your frustration and I suspect you are feeling pretty anxious about it, understandably. I hope that when you try the new dose/change medication that perhaps it will be better for you. Managing these types of drugs to help vertigo/migraine is difficult, they are pretty potent and complex and all you can do is try as you have been.
Hope is important to have. We can always hope for the tiny miracles too - that we are dizzy free for longer periods as time goes on, that does happen - I hope that happens for you.
I have never seen it mentioned on here - but perhaps it has been and I have overlooked it: when I first started looking at what causes vertigo I found information on exercises ( I think there are two different approaches) which are supposed to be quite effective in helping to reduce vertigo considerably (the name Bickerstaff comes to mind but I am not sure). They were based on the belief that it is crystal formation in the ear that then dislodges and goes where it shouldn’t that give the rotational spin. I did try them for a time, and I do think they assisted but I have not kept them up. Would that be something you would be willing to try do you think? I think I should practice them again as they had pretty good success rates in reducing the amount of attacks people got.
Hi Mrs. G.
You are right…there is something called the Brandt-dorff vestibular exercises that help me some. So if i ever feel like a Vertigo is brewing…i will do thos exercises on the side of the bed and it helps. We must hold on to hope!
You guys have probably heard of the Epley manoeuvre (invented by John Epley) that is designed to dislodge the particles that float around in the wrong semi circular canal. This is usually performed by a physio or an ENT specialist but can be taught to patients so that they can dislodge their own troublesome particles. I’ve had it done a number of times but unfortunately it didn’t cure my dizziness. I’ve also done the VRT exercises you describe with a little success but not enough to make me feel they were very helpful. It’s horses for courses though so they make well work for some.
I am going to have a go with those exercises as I have never followed them for long enough. I will just have to get into a routine and keep a diary on my migraine/vertigo during that time to see if it makes a difference.
I did them religiously for about six months - 3 times a day. That is what I was prescribed by my physio.
About 7 years ago i also had the Epley Manuever done but it didnot help much. Whenever i feel like a vertigo coming on which is much less than it use to be i will do the Brandt-Dorff exercises and they seem to help some.
The doctor that diagnosed me at UCLA told me it is possible that my condition started out as Bppv and evolved into MAV.
I have also use the Brandt Daroff exercises particularly when I have problems turning over in bed and they do seem to shift things. Last time I had a bad problem with that was almost a year ago the day after I had a tooth removed. I think there was a definite link.