Have a question to all of you…when you look back at this chronic condition what was your very first Troubling Symptom that initially started this nightmare? Mine began with periodic episodes of Vertigo back in late 1980’s…including 1990 & 1991. What is so ironic…the last 4-5 years the Vertigo has calmed down with the exception of one or two half spins per year. But if i were to go back to my old diet habits of 4-5 cups of coffee, excess of msg, etc…i am sure i would more than likely end up with more spins. Also…excess of intense stress can bring on the spins.
1992 is when the condition went completely Chronic and along with vertigo i would get the rocking motion, tension in my head, foggy feeling, etc.
Gidday Joe,
I had my “big crash” in March 2006 but in hindsight my first real symptom leading up to this was a couple of things. About 12 months prior to this, I remember getting home from work and was out back near our study and, luckily our other bathroom and wham… it was the onset of incredible motion sickness (which I only now realise, I thought it was food poisoning or a virus). I hit the deck there and then and was unable to move my head even an inch and felt violently sick with diahorrea. Many hours later when my kids found me, my daughter dragged out an old thin mattress and dressing gown to cover me and there I stayed for 2 days! Once that passed life picked up as normal until about 2 months prior to the “big crash” when I started getting a really bad ear ache in my left ear, together with a kinda woozy, dizzy feeling along with nausea. Went to doctor and was told it was some vestibular virus but would pass. Well here we are today and nearly 3 years down the track and going down the same path as many on this board. Meds and time have been the answer to my MAV, just like most of us here.
Great question Joe, hope you’re doin’ well and your cats(is that one or two, I’ve forgotten??) are doing well. My two kittens are now 8 months and I’m lovin ever minute of it!
Mine was Thanksgiving November 2007 when I was driving to my brothers and out of the blue I got light headed and felt like I had a severe drop in blood sugar, plus my depth perception and spacial orientation was out of whack.
It took until july of last year and I had the big crash as some call it. Symptoms had increased from Thanksgiving until that time where I felt off balance and had that constant motion intolerance on a daily bases. But on that day it was awful …
I have found that for me the waves are still there but have calmed down over the last several months I have some really good days and some not so good days.
With the change it my diet, getting enough sleep, staying on a schedule, and moderate exercise things are much better, not perfect or completely normal but better. As I have told many I have not had a splitting headache in months but I do still have some of the other symptoms and the anxiety is still there but I am working on that.
i have been unable to find a medication I can take as I am very sensitive to meds. I am trying to handle this through some natural means at this point and hope I can find a best case scenario in the future.
We can all hope and share our experiences and that itself helps to know you are not the only one going through this.
My first symptom was episodes of vertigo. I had about 3 during the month of May of 2008. Then I woke up June 16th feeling as if I was walking on a boat dock. I was throwing up, I had diarrhea, and was dizzy. From that point on I had dizziness 24/7 with motion sickness and extreme anxiety. I have been feeling better the past maybe 10 days only. Yesterday and today I had minor, quick “dropping” feelings. They were very brief. I felt like the ground moved down when I stood or walked (only a few times). I strayed from my diet and have not slept well because of a sinus infection. I am contributing those two things to the spells. However, they were nothing like before and my head does not feel heavy like it did. I just wish I could get rid of the anxiety altogether. I keep trying to have a positive outlook. I found out that when I get angry or frustrated over this condition, it makes it worse for me. I hope all of you are feeling better.
My first symptom was episodes of vertigo. I had about 3 during the month of May of 2008. Then I woke up June 16th feeling as if I was walking on a boat dock. I was throwing up, I had diarrhea, and was dizzy. From that point on I had dizziness 24/7 with motion sickness and extreme anxiety. I have been feeling better the past maybe 10 days only. Yesterday and today I had minor, quick “dropping” feelings. They were very brief. I felt like the ground moved down when I stood or walked (only a few times). I strayed from my diet and have not slept well because of a sinus infection. I am contributing those two things to the spells. However, they were nothing like before and my head does not feel heavy like it did. I just wish I could get rid of the anxiety altogether. I keep trying to have a positive outlook. I found out that when I get angry or frustrated over this condition, it makes it worse for me. I hope all of you are feeling better.
Nance
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The anxiety can be the worse because you do not understand what is happening and it is very scary at least it is for me.
But it has gotten better since now have some idea of what I am dealing with. I find that a cold compress on the back of the neck helps and the diet is a big deal, I strayed other day for the first time in months and the symptoms were brought on within hours.
Deep breathing, relaxation techniques will also help with the anxiety.
I have nooooo idea. This has been going on like my whole life at a LOW level, then ramped up during 2006, with what I suppose would be my “crash” June 2007. The crash wasn’t a big one; I was out on a short walk, and had a 2-second vertigo episode and almost fell to the ground (I ended up on my knees and hands, if I remember correctly). I felt really motion sick the rest of that evening, though.
After that it just went downhill, getting worse each month… except no vertigo this time, just the motion sickness/visual sensitivity etc.
If you count further back, then I guess either regular migraine headaches or motion sickness was my first symptom, both going back many years (the latter most of my life, but also at a lower level, and the former has been noticable for at least 7 years.
My first attack of severe vertigo happened when I was only 18, had been to a party drinking heavily red wine. Next morning couldnt get out of bed, room spinning. Was fine after that, working, socialising. Met husband, married, went on holiday, drinking heavily, next morning, couldnt go down to breakfast, room spinning, I used to put it down to hangover at that time. I used to have headaches for days after a few drinks, looking back, they were migraines. In my 20s and half my 30s, I wasnt too bad, migraines but in between OK, then in my mid 30s it started to become constant.
Thank you Everybody for sharing your experiences…i hope more people will follow. By doing this…it helps to stimulate how this mess actually all got started. Now that i think about it…when i would have an occasional Vertigo episode (mind you, it would always be very late at night or wee early in the morning and i would wake up with vertigo)…i would vomit violently and always blame it on food poisoing or the flu. The episodes happened twice a year (1989-1991). After i vommited…i would have to sit on the couch for atleast two hours and try not to move my head for fear of more spinning. Then when things calmed down i would slowly get back into bed and place my head on two pillows. You would have thought i had Benign Positional Vertigo (maybe i did at the time, who knows for sure??) Anyway…my big CRASH was June of 1992…i woke up at 2am in the morning from sleep with the room spinning very violently for about 45 seconds…i literally crawled to the bathroom and vomitted till the dry heaves (sorry for being so graphic). I slowly walked over to the couch…sat down…and in about 15 minutes is when i began to notice this Motion and Tension and Pultzing Inside my head that creates a Rocking sensation and here it is 2009 and has never gone away. Luckily the Vertigo is nearly gone…but the Motion and Tension & in my head is still there.
I noticed atleast three of you started out with Vertigo. Some of these vertigo attacks could have been brought on what we drank or ate the evening prior to sleep?? So that definitely gears towards headache.
Judy…i recall after one of my vertigo attacks in the early stages i went to the doctor and he said i probably had a virus. What was so interesting is after about 3 days i was totally back to normal and back to work. Each episode would always take 3 days to feel better. It took about 3 years of occasional Vertigo to get to the Big Crash where the Motion set in and has never left me.
My cats (buster and buddy are doing fine…thanks for asking). Glad your kittens are doing well.
My first symptom was vertigo too. Like you I had bouts of it for years before my “crash” in October 2007. I was diagnosed with BPPV back in 2001 or 2002. The vertigo bouts would last from a few days up to a month, and they would occur 1-3 times a year. When the episode started in October 2007, I thought I was just in for another round. Unfortunately, new symptoms added onto the vertigo and I haven’t been 100% since. However, also like you, my vertigo has calmed down and is no longer a primary symptom for me. I get short spins occasionally, but more often I feel a more general sense of dizziness or off-balance. I now wonder whether it was migraine all along, or was it BPPV before and migraine now?
Good question but hard to answer. I guess I would have to say my FIRST symptom would be that of getting motion sick very easy and also a constant feeling of motion sickness. That goes back to the 70’s. In the late 80’s I had some brief episodes of vertigo lasting a couple of minutes and coming out of nowhere and with absolutely no warning. I had a few episodes over 3 days, then a year later it happened again and a year later again. Then I was fine.
Then came the car sick dreams which would wake me up. I was told I had BPPV but the doctor didn’t really have anything to back it up. The car sick feeling has persisted and is getting worse and worse as the years goes by. A few odd attacks of dizziness and borderline vertigo here and there. In August of 2007 I was hit with a severe vertigo attack upon waking up that sent me to the ER as it didn’t go away, totally unable to move.
Another attack 5 months later, another attack 4 months later, another attack a month later, another a month later, another 4 months later, another 2 months later, which brings us up to the present. And still undiagnosed. I don’t know if I have MM or MAV or something else and I am still unwilling to go through with the ENG test so I’m not sure when or if I will ever get a diagnosis.
I’ve had migraine-type stuff going on since I was a teenager really. I’d occasionally get weird pulled muscles in my neck where I couldn’t turn my head for about 4 days. There was no apparent cause for these episodes. I’d also get “heaviness” behind my eyes occasionally too although I thought I was just tired.
It wasn’t until I got hit with vestibular neuritis in Aug 2003 that the real mess began. My neck pain problems had been bad before this attack and I was already dealing with bad head fog etc. But once the VN hit, I was instantly ultra dizzy and completely trashed beyond belief for 6 weeks. An anxiety disorder plus depression came with the VN for the first time in my life. It’s not difficult to see how I developed MAV. Migraine was already well-entrenched into my head and then my vestibular system was wiped out. I’ve been recovering ever since.
Hey Joe,
I’ve had migraine-type stuff going on since I was a teenager really. I’d occasionally get weird pulled muscles in my neck where I couldn’t turn my head for about 4 days. There was no apparent cause for these episodes.
Scott 8)
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Scott, Do you see a connection between your neck muscle problems and migraines? Did you have migraine headaches when this happened? I ask because in the past I have had episodes of neck problems where I also couldn’t turn my neck for 4 days. I always attributed it to a stiff neck, though, not to anything migraine related. I just assumed I slept funny. In retrospect, maybe there is a connection. I continue to have neck problems and where most people will turn their head to look at something I turn my whole body. I do this partly because my neck hurts chronically and partly because to just turn my head makes me “carsick.” I had an MRI of the neck about 8 years ago and it showed lots of disc issues but nothing real serious.
Do you see a connection between your neck muscle problems and migraines?
Absolutely 100%. I’ve never had a migraine in my life of the sort the IHS describes (pounding one-sided pain, with nausea and vomiting etc). In fact, I can induce hard core neck pain by simply using a household cleaner and exposing myself to the fumes for 15 minutes. Particular foods will cause me to wake in the morning with neck stiffness that can be so bad I can’t turn my head. It’s all migraine and has nothing to do with muscle overuse or sleeping in the “wrong” position.
I had an MRI of the neck about 8 years ago and it showed lots of disc issues but nothing real serious.
We all have some sort of neck degeneration but that does not necessarily correlate with pain or neck problems. There are numerous studies where people have significant pathology in their necks but zero pain. This applies to the lower back as well.
Make sure you have a read of this if you haven’t already seen it. I put it up on the board a while back. Dr Hain hands this out to newly diagnosed MAV patients. It touches on some of the things we’re dicussing.
My first severe vertigo attacks, were always when I woke up after sleep at night, usually around 4 in the morning.
The neck pain … sometimes I used to get such bad neck pain, I used to say it felt like I had a migraine in my neck.
My full blown migraines have always been in the occipital region of the head at the back.
I had motion sickness badly as a child, had to take something called “sealegs” for travelling.
Had zig zag lines before I got migraines.
Had a lot of abdominal pain as a child when I got stressed, looking back this was probably abdominal migraine.
My first noticable symptom was when my wife was in the hospital trying not to have our first son two months early. I spent the night on a chair that folded out to a bed with a built in pillow. That thing had my neck at such an odd angle that I woke up the next morning with a crook in my neck that didn’t go away for several years. With the crook in my neck was distorted hearing out of the ear on the same side. It was months later before I had any type of vertigo.
My previous answer related to my first symptom of my current condition. Looking back as some of you have, I had more typical migraines in my early twenties. The first was when I was pregnant. I had several more in the years following the birth of my daughter. I concluded they were all hormone related based on the timing. After a few years, I stopped having them. I would go through the typical migraine stages. It would start with an aura where I would have tunnel vision, blind spots, and nausea for half an hour or so, and then the killer headache would come on. It usually only took a day or two to get over it completely.
I have always had a problem with motion sickness, but it worsened in adulthood. As a kid, I would ride the spinning rides at the fair but would always feel nauseous afterward. As an adult, I simply can’t handle the spinning rides, but I do still enjoy a good roller coaster (at least I did before the MAV started).
Like Christine, I too went through period as a child, a teen actually, when I experienced abdominal pain and nausea when I was stressed. My diagnosis was “spastic stomach,” but it may have been abdominal migraine. As a related note, my daughter became very ill when she was in the fourth grade. She had severe abdominal pain for four months. She lost 16 pounds, which was very scary given her size and age. She was eventually diagnosed with “post-infectious irritable bowel syndrome” because it all started with a cold virus that caused her asthma to flare up. They gave her steroids, and three days later the stomach pain started. I suspect it may have been abdominal migraine. Since she returned to 100% of normal 6 months or so after it started, she hasn’t had any symptoms return. Hopefully, that wasn’t a precursor to her having migraine trouble as an adult.
My husband’s first symptom WAS his “crash”. We were getting ready to have a dinner party at our home. He became unsteady, staggering, nauseous. Went to ER. Said he had a virus. He was sick for about 2 weeks with tiredness, unsteadiness, general bad feeling. Went away. Came back almost exactly 1 year later. Stayed 2 months, went away. Started coming 2-3 times a year, then every other month, now pretty much constant-semi functioning as long as he doesn’t move around alot. Still has periods where he is couch bound for a week or two at a time.
Right now he is home bound because he can’t take the motion of riding in a car.
My husband’s first symptom WAS his “crash”. We were getting ready to have a dinner party at our home. He became unsteady, staggering, nauseous. Went to ER. Said he had a virus. He was sick for about 2 weeks with tiredness, unsteadiness, general bad feeling. Went away. Came back almost exactly 1 year later. Stayed 2 months, went away. Started coming 2-3 times a year, then every other month, now pretty much constant-semi functioning as long as he doesn’t move around alot. Still has periods where he is couch bound for a week or two at a time.
Right now he is home bound because he can’t take the motion of riding in a car.
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It seems that quite a few of us started with periodic bouts over a period of years that eventually turned in to 24/7 symptoms.
My husband’s first symptom WAS his “crash”. We were getting ready to have a dinner party at our home. He became unsteady, staggering, nauseous. Went to ER. Said he had a virus. He was sick for about 2 weeks with tiredness, unsteadiness, general bad feeling. Went away. Came back almost exactly 1 year later. Stayed 2 months, went away. Started coming 2-3 times a year, then every other month, now pretty much constant-semi functioning as long as he doesn’t move around alot. Still has periods where he is couch bound for a week or two at a time.
Right now he is home bound because he can’t take the motion of riding in a car.
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It seems that quite a few of us started with periodic bouts over a period of years that eventually turned in to 24/7 symptoms.
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I may be part of that club as well, but with migraine headaches rather than vertigo. They sure became more and more frequent after my crash, until I had (and have) them daily, constantly, every second. Say 5 years ago I only had one every month or every few months.
Marci…i agree…most of us (not all) seems like the condition came on gradually. Whenever i would have a vertigo episode i made an excuse for it…that maybe it was the food i ate while dining out or something just did not agree with me…or a bug. But always mended back to Normal in 3 days…back to work…felt normal. Never thought that in a couple more years all of this was going to go chronic and turn into years of agony! If I could have only saw the Big Picture!
