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Specific Illnesses & Conditions VM/MAV
381

Hello there everyone,

My story started around 8 year ago, just after giving birth to our first child. I was quite unwell at the time with pneumonia and started experiencing lots of visual disturbances - thinking things were moving on the ground when there was nothing there, inability to read as words jumping on the page, inability to watch fast moving TV programmes along with a general ‘woozy’ feeling in my head, tinnitus and like I was walking on marshmallows. I remember having to lie down every day at this point to try and feel better. I really struggled to drive in the rain as I couldn’t cope with the movement of the window wipers and I also couldn’t look when opening drawers.My GP at the time said I had ‘Uncompensated labyrinthitis’ along with some slight hearing loss and I was referred for some VRT. I did the VRT and appeared to improve a little however the symptoms didn’t ever truly leave me and the experiences went on and off since then. I could go months without having symptoms and then they would come back again without me being able to identify why.

Over the years, we had another child and emigrated from Scotland to Melbourne. I was able to manage my symptoms without too much difficulty and whenever I felt a bit off, would lie down for approximately 30 minutes and feel a bit better. I continued to believe I had Uncompensated Labs.

Around 3 months ago the visual disturbances came back severely. I felt like the walls were going to fall on me at work one day, started to see things moving on the floor again and my eyes felt so drained & heavy every day. I bent down one day to pick something up off the floor and actually fell over on the way back up. This gave me a huge fright and straight after, I had the whole world spinning sensation for the first time ever. I had to lie in bed and literally not move for 3-4 hours. I couldn’t even manage to go to the toilet with assistance from my husband as I knew I would fall over again. I was so distressed by this point and just willed & prayed myself to feel better. I referred myself to Dizzy Day Clinic for some VRT after this episode and they also managed to get me an appointment with Dr Shuey, a Neurologist at Melbourne Eye & Ear Hospital (I had been on the waiting list for about a year at this point). Dr Shuey has diagnosed me with Vestibular Migraine and recommended Sandomigran, which I have been taking for 4 weeks now. I have to be honest and say I was not convinced immediately with his diagnoses but now I have found so much helpful info on this website I am confident this is what I have.

I am currently trying to work out my triggers and after reading the wonderful ‘Heal your Headache’ book, I started the migraine diet. I don’t see any difference at the moment (3 weeks in) but not sure if I am expecting too much too soon. I had some blood tests done and found out I am anaemic so started on iron supplements. I also started a magnesium supplement (1000mg per day) but found I felt awful, like I was drugged, so have stopped these for the moment. They made me sleep better than I have in years though! I also got my eyes tested and decided to opt for glasses as my vision is only 70% in my right eye and 90% in my left which may be contributing to the heaviness/burning I feel every day. I continue with the daily VRT and have upped my Sandomigran to 1.5mg every evening.

I am so frustrated, saddened, disappointed, angry that I am still suffering from these awful symptoms 8 years on and wonder when there will be light at the end of the tunnel. I have been unable to go to work for the past 2 months and feel our 2 adorable children miss out sometimes as I’m just not able to be as active with them as I would like. I am determined to find out my triggers and get on top of this though. I’m beginning to wonder if mines are mainly hormone related and also sun/light glare (hopefully the new glasses and sunglasses will help with that).

So that’s my story in a nutshell. I hope to find lots of information and support on here and hope that I can help others too.

Angela
x

382

Hi everyone - I have had an account and have been reading the boards for a while but held off posting until I became more certain as to what my individual flavor of dizziness and associated problems were…I apologize in advance for my very long-winded story that follows!

I first remember feeling that “something’s definitely not right” in January 2011 while on a trip to visit a friend in San Francisco. I couldn’t pinpoint what was wrong, but knew I was exhausted and felt extremely disconnected and abnormal. I figured I was overtired and it would pass with a few days of catching up on sleep, but it didn’t. Days turned into weeks, and I felt a constant fatigue, “brain fog”, and weird trouble with coordination that made me sure that I was quickly developing some sort of early-onset dementia. I had a barrage of testing with countless doctors - GP, neurologist, endocrinologist, ENT, rheumatologist, you name it. Nearly everything came out with flying colors, and I spent some time chasing my tail with a couple equivocal results out of desperation. One day as I was walking down a hallway, I noticed the distinct sensation that the floor was tilting slightly, and noticed that my coordination issues were plagued by gravity seemingly playing odd tricks on me. I also had been noticing a full sensation in my left ear that didn’t seem to go away. A google search led me to the fact that I should see a neurootologist, pronto. I made an appointment and was evaluated with a fairly full panel of inner ear testing (hearing, calorics, VEMP, ECOG), plus an MRI of the brain and inner ears with contrast. It took me a while to follow up with all of the testing, but when I finally saw the doc again, he told me that my tests were all fine - except my left ear had a positive ECOG. Since I was not suffering from Menieres-like attacks and had never had vertigo, the diagnosis was called simply “hydrops” and I tried a diuretic. I had a slight bit of improvement, but not much, although I did notice I felt better when I was VERY dehydrated. I also noticed that my balance symptoms seemed to be worse the more I moved around and a bit worse while bending over or straining. The doctor suggested that I trial a migraine diet for possible MAV but I did not comply, choosing to focus on the possibility of having a PLF - after all, I have no personal or family history of migraine, did not have headaches as a symptom, and had also had a bad fall with minor whiplash plus an airplane flight right around the time of my symptoms appearing. As ECOGs are positive in PLF as well, it also seemed a more obvious choice to me. I did try a short course of Verapamil and then Amitryptiline, neither of which I tolerated well. The doctor agreed to do a PLF repair and I had the surgery on my left ear in November 2012. I never improved after the surgery, as one with a PLF should. My ECOG remained positive in my left ear. My doctor believed that I still had hydrops and that I may possibly need an endolymph shunt surgery. I was much less willing to undergo this surgery without getting a second opinion, so I sought a second opinion from another neuro-oto in the area. We ruled out SCDS with a CT scan, and after evaluating me, he told me he thought I had vestibular migraine. I agreed to try the diet and magnesium supplements. After roughly 4 weeks of following the diet, I began to feel a bit of improvement. I added CoQ10 and after a couple of additional weeks was feeling pretty good, all things considered - which brings me up to this past weekend. I was feeling so good this past weekend that I actually went out dancing for a bit to a local nightclub, something that I used to love but would have been unheard of most of these last 3 years due to the way I felt. After leaving the nightclub this past Saturday night, I noticed my right (good) ear behaving strangely - it was very full and felt odd. I chalked it up to too much loud noise and that temporary cottony deafness you get when in loud environments such as I was in. By the next morning, I was extremely off-balance again, and felt the familiar head pressure and fullness made worse with motion and it was obvious my right ear had been “triggered” as well. When my symptoms did not fade by Monday afternoon, I made an emergency appointment with my new neuro-oto, who saw me on Wednesday. My hearing test came out fine, and he confirmed that he is now positive that I have vestibular migraine, triggered by extremely loud noise. Thinking back, I had a similar incident while in San Francisco when this all started 3 years ago. I will be seeing my primary care physician next week to discuss which migraine medication to trial first.

Sorry for the LONG description…as many of you can empathize with, this has been a very difficult 3 year journey. My parents and friends have been wonderfully supportive but it is very hard for them to understand how I feel so constantly disabled but look perfectly normal on the outside. It’s so hard to describe to people that every second of every day requires much more effort, and that I simply cannot do many things I used to, or if I can do them, I don’t necessarily enjoy doing them anymore because they just exacerbate the way I feel. I push myself to do things and have tried to replace old interests with new ones if possible, and that helps my emotional state. I’d also like to think that my dog probably doesn’t even know the difference if I walk like I’m always drunk, am ridiculously clumsy and can’t think straight to save my life - he’s just happy for the extra “couch-time” haha!! :wink:

I hope all of us on this crazy journey can find a way to manage and reduce the bothersome symptoms, so that we can live our lives more freely and fully than we have since the onset of our conditions. Here’s to better health and happy lives for all! xxxx

  • Jennifer
383

Hi Jennifer,

I see you live in the DC area, is that right? Can I ask you what drs. you have seen? Did you get any worse from the plf repair? Did it affect your hearing at all?

384

— Begin quote from “sarahd”

Hi Jennifer,

I see you live in the DC area, is that right? Can I ask you what drs. you have seen? Did you get any worse from the plf repair? Did it affect your hearing at all?

— End quote

Hi sarahd,

Yes, I live in Maryland, just outside of DC. I have seen Dr. Carey at Johns Hopkins, along with the head of vestibular therapy there, Dr. Schubert. I have also seen Dr. Fitzgerald at Washington Hospital Center (he has an office both there and in Bethesda, I believe).

I was worse for a few weeks after the PLF repair, but then things slowly went back to my baseline after the healing process. It only affected my hearing for a few weeks while the swelling went down, and my hearing in that ear is back to normal - however, I did develop a very mild high-pitched tinnitus and also an occasional “whooshing” sound in that ear - neither of which are all that bothersome, certainly not as bothersome as the balance issue.

Feel free to contact me if you would like any additional information - I am new to message boards in general and still trying to figure out how to navigate - but I think I saw a private message function somewhere?

Take care,

385

Hi Jennifer- if you look up at the top of the screen u will see something that says 0 new messages- if you click on that u can see and send private messages- i am going to send u one i saw dr. fitzgerald too.

386

I am still looking for answers to this after all these years. First I have not be diagnosised with MAV. I started having vertigo and drop attacks back in 1980. I saw a doctor in 1986 when I was 30 I became unfunctioning somewhat. Had ENG was told discrepancies on left side to go on and it would burn itself out. I suffered with spinning vertigo for 6 years. Saw other doctors and was told it was all different kinds of things. Had another ENG in 1992 that showed no reaction on either side. That doctor said it was either autoimmune, from chemical exposure, or antibiotics. I was never given any medications except in 1986 when a regular gp put me on steroids and antivert. I don’t think it helped but not sure. Had a reaction to the steroids so quit taking it. Anitvert never did anything for me. I always had major ear infections all the way though adulthood so myself I thought it was some autoimmune thing from ear infections. I also had a lot of migraines. They started when I was about 13 but were usually a visual type thing. My mother had the blind migranes and told me that is what I was having when I had them at 13 and then through my 30s. I eventually stopped having regular migranes. Would have vertigo every couple years but the dysequilibrum was constant and never was able to drive again or do certain things. Had no balance in the dark or things like I couldn’t stand on one leg. Have to use a cane and even sometimes a wheeled walker. I was ok with all that because the vertigo for me in the was the worst thing. And when people talk about spinning to one direction or the other. I had the spins to the left which was the first side affected and then the switched and went to the right. I always thought what ever was going on it started on one side and then progressed to the other. I have fairly good hearing so was told I don’t have Menieres. I have tinnitus all the time both ears my left is worse. So the years went by and basically I was leveled off never had a for sure diagnosis. A couple years ago the oto doctor I see did a VEMP test. It showed a problem and he thought I had SCD. Had a cat scan and that was normal. I ask him what I have then and he isn’t sure. I am almost 58 years old. Last week in Walmart I had a type of thing happen and fell on the floor. I have been dizzy ever since. I feel like I am walking on an escalator. Like my ankles when I try to stand are doing a hyper flexing trying to keep me balanced. If I try to walk I feel like I am being pushed forward like my feet are being left behind. Also my eyes aren’t focusing well and if I sit down to quickly or try to look at something to quick will get thrown to the ground. If I bend over foward will fall forward. I have wondered if its been a migraine thing going on over the years. I have neck pain from arthritis, have been told I have perinious anemia and low vitamin d so I take those. One nuero thought maybe years of low vitamin b12 might have caused this. I also have a high ana 1280 and was suggested lupus or why they think its been autoimmune but on other tests the antibodies aren’t there so they think the high Ana is from the perinious anemia but they don’t really know. Just giving that as why the autoimmune thing has always been a thought. Even though I am almost 58 this is my first year of stopping my cycle. Its been about 6 months now have been getting hot flashes and all that. Just a couple years ago on hormone testing I was told I was completely normal like someone in thier 30s. But this year test show I am starting into menopause. I am wondering if all this could be related to hormone changes and MAV. But I don’t see how I could have such lack of function on Engs and bad Vemp from migraine though. Or if my hormones are like someone in thier 30s a couple years ago why when I was in my 30s I was having problems if 2 years ago my hormones weren’t the problem. And I still wonder what the bad Vemp means. I don’t take meds because I get my balance from my vision and muscle input. Which is why I keep falling I guess because right now both of them are not working. Have fallen at least 5 times this past week. I sure wish I new what to do. I can’t travel right now am stuck at home. It’s very depressing having this and then not really ever knowing what has caused it. If anyone sees themselves in this would be good to know. I read some of the stories but my eyes are doing something that makes me have to stop refocus and type some more. My eye tracking is really off. Linda

387

Hi,
My name is Teresa, but when I tried to register it wouldn’t go through, so I figured the name was already taken, so I used Lucille2 from the TV character with Vertigo from Arrested Development because that is how I feel sometimes.
My big problem is very painful migraines, with periodic dizziness. However, when the dizziness does hit me it is very bad for weeks at a time. As for the Migraines, they never seen to go away and I am just hoping I can learn some things about how to manage my life a bit better. I am embarrassed to say that I really know nothing about MAV other than what little I have read from this forum. I could use a whole lifestyle change.
Below are the questions I found from the beginning of the thread and my answers as best as I can think to answer right now.

**- How your condition started **I just turned 47 this month, and have been struggling with migraines most of my life.
- Any precursors that might have been related (ie. a lot of those with MAV had motion sickness as a child, some like myself had cyclic vomiting syndrome). I got very “sea sick” as a kid riding in a car. I could not read and ride in a car, ever!
**

  • Where and when you were diagnosed**
    I was diagnosed about a month ago with MAV at UVA Hospital (Charlottesville Virginia) Tucker Gleason PH.D. Assistant Professor Director, Vestibular & Balance Center. She used to teach with a Dr. in Chicago Dr. Hain dizziness-and-balance.com

- Other diagnoses that you have had
Migraine,
This year I have been treated for (in order):
-H pylori
-Lump in breast removed
-2 polyps removed during my colonoscopy
-A very large tumor removed from my throat called a Parathyroid tumor they said I had been misdiagnosed for nearly 20 years.
-I have gained over 80 pounds in the last 11 months topping my weight off at 220 with a frame of 5’5 to hold it up.

- How you are treating your condition
My general doctor prescribed Zonegran 100mg and Fioricet 50-325-40
The Zonegran is new for me. She started me off for a week with 50mg, at week 2 she said take 100mg. I am to take this for a few more weeks to see what happens.

- What has worked for you and what you might recommend other people try
I have no idea. Other than the Fioricet nothing has ever worked for me. I was on a month of excruciating pain that nothing would touch so she gave me several things to try including Prednisone (that stuff is freaky)! When nothing worked she wanted me to go to the emergency room for them to put me to sleep, but I have a fear of emergency rooms, and of new doctors. If you read above you read that I was misdiagnosed for almost 20 years by all kinds of dr’s. Turns out a nurse practitioner figured out what was possibly wrong with me and ordered a calcium and PTH test and there it was so simple.

I feel very happy to have found this forum and fortunate to learn from others like me. Thank you for all you do to make it easier for the rest of us.
Sincerely,
Teresa AKA Lucille2

P.s. I forgot to mention I have tinnitus really bad. It is like I have my own band in my head. It isn’t a very good band either. :evil:
Also, my doctors think I might have Acute intermittent porphyria which is very rare and very hard to prove, but now i think that I might just have a migraine that causes my stomach to hurt. I read that it can cause that too. Have any of you heard that?

388

Theresa why would a calcium and PTH test help them to know you have MAV? I am not sure that is what I have and would like to find a test that would determine that. If I find out I have MAV it would be 27 years of misdiagnosis. I hope the medication helps you. I am sorry you didn’t find out 20 years ago this is what you have.

389

Sorry Lady56,
I was misleading. The calcium and pth test showed I had the parathyroid tumor which cleared up enough of the muddy water for someone else to find my Mav. I guess my point was I don’t trust doctors so much because for years I was so sick and they sorta blew me off if they didn’t find something right away or it seemed like it.
I have no idea how long I have had MAV exactly because for all of my adult life I have also had a tumor in my neck that causes a lot of the same symptoms (hyperparathyroidism). BTW, the parathyroid has nothing to do with the thyroid in case you were wondering.
I don’t know if it is the Zonegran or not but I think I might be a little/a lot bitter this week about that. :idea: This post and the one you responded to sure reads like it doesn’t it? Yikes

I wish you all the luck in the world. Are you being treated?

390

Ok I understand what you mean about the tests. I see a doctor yearly for the ear. Just to keep contact with him no real treatment like meds.

391

I don’t understand. Is an insurance thing or do you not have many doctors where you live? I don’t want to come to this forum and act like I have any answers for anyone because I am looking for help and knowledge myself. What little I have read from you in here it is clear you are seeking and you are in need of a some answers (I have read a few of your posts and you seem to know a lot about this kind of thing), what is with your doctor? I am a pretty passive person, but if I had to wait a year to see my dr. again I would be getting a new one.
Do you use the **My Chart ** with your dr. to communicate between visits? I would be burning up those computer keys if I were you, sending him/her every article I could find, to light a fire under their backside.

392

Hey, Not really sure what your asking me. Mainly had a problem with vertigo and balance since 1986. Have seen different doctors who told me different reasons. The doctor I see now is the one I have stuck with longest. He has the education that he is as good as most. But after testing will change what he thinks I have had going on. Basically have times where I can function and contend with imbalance. But then will have a flare up times of severe symptoms where I can’t do anything much like riding in the car from vertigo. Will fall down if I walk very far. So have to wait until its better to go to my doctor. He has done or sent me for multiple different tests. They show abnormal results. On ENG it shows no vestibular response. There isn’t medication for that only physical therapy which I did. It helped some what. On VEMP it showed abnormality which points to SCD. So he sent me for CAT scan but the CAT scan was normal so he then felt it wasn’t SCD. He had me do blood work which showed high ANA 1280 so he thought it was an autoimmune illness like lupus. I also had what is called a western blot test that checks for autoimmune of the ear. Tested positive for that. But when I got additional testing to prove the autoimmune stuff the tests were normal. Had my blood checked for Vitamin B-12 it was low and tested positive for perinious anemia. That can cause problems with balance. So got shots and now level is in normal range but didn’t solve my problem. I went was tested for basically syncope by a different doctor my current doctor sent me to who supposedly knows alot about it. I have a mitro valve prolapse and they thought maybe that was the problem. I was told that I should have done better on the tilt table but not a severe problem. He told me we could try a med called florinef but just as an experiment to see if it helped. But that I wasn’t showing the exact results the like to prescribe it for orthostatic hypotention. I don’t think the doctor are bad doctors. Just not been able to pin point what the problem is. Migraine was brought up at one time before I had the larger part of the testing done. Other tests done by the ear doctor along the way Tympanometry, ABR, plateform test. When those showed problems he changed his thoughts about it being a migraine thing. I still wonder though myself about migraine because of previous history when I was younger. I will get with a kind of pounding rotation in my head. Falling can cause fear and all kinds of symptoms though. Ear problems as well as migraines can affect some of the same things like vision, hearing. I have insurance like others and have to get referrals now with the plan I am on but other times with other plans was able to go to who I wanted without referrals. I thought there were a lot of people that have ongoing problems with migraines and other illness that don’t always get the right treatment. I don’t think I am so unusual in that way.

393

I can’t think of the name of the test that sealed the deal for me to have the diagnosis, and you may have already listed it, but it is the test where you sit in the chair and it rotates. They measure your eyes from the camera on the swimming goggles you are wearing . Anyway, your eyes are only supposed to continue to respond or jerk for about 15 seconds after you are no longer moving. My eyes continued for over 3 minutes. Anyway, if you have not had this test then or have any idea what test I am talking about maybe I can look at my paperwork and give you the name of it.
I feel concerned for you because you have such a scary case. When I was a teen (a very long time ago) I had several unexplained drops, and as an adult it has only happened about 5 times. Unless I am mixing you up with other people on here (which is possible since I am reading the forum a lot this week) this has happened to you a lot and they still don’t have a diagnosis for you yet. I guess I am not asking anything as much as I am frustrated for you is all. No sleep can make me a not very clear so sorry about that.

394

Hi, Not sure if I am the one with a bunch of drop attacks. I have had a bit over the years but it has not been my biggest problem until lately. I tend to come to the board when flare ups are happening. During the better times I am happy to just be able to do what I have to do. The test your talking about I believe is a rotary chair. I haven’t had that test. My doctor has a chair to do the Epley manuver on patients. I haven’t had to use it. If I remember right there was a test I had that I looked at a moving wall and moving floor as well as a test to put on goggles. Whether that helps to determine MAV I am not sure. I called my doctor today and the physical therpist called me back to try and get me in to see what is happening right now. I told her I can’t travel well so they are going to try and have a physical therapist come to my home and check for BPPV. And if they think it is ear related with what symptoms I am having going on right now. Mainly the falling down. The insurance part. My doctor is not on my plan I have to self pay and we work it out. But if there is a PT that will come to my house and they aren’t on my plan I will have to not use them. I will have to get to the office and let my doctors PT do the testing. So those kind of things prevent getting answers. I am glad there are people who have gotten solid answers on MAV. Its at least something with a treatment to try. I get sick of this also. I guess over the years back when I had my first vertigo attack and was just dismissed as being a nut or something it was very stressful. I couldn’t find a doctor that took me serious. I live in a city that especially back 27 years ago that didn’t have a lot of different kinds specialists. I was told told things like it will burn itself out or anxiety. I really did believe if I just picked myself up by the boot straps I could over come whatever was going on. When I couldn’t over come it I decided to go out of my area. But could only do so when I wasn’t as symptomatic I think I could have gotten a better answer if I could have been tested during the worst times. This is a difficult way to live can be very depressing.

395

Hi, my name is Kimmy and I’m 27. I was recently ( as in 2 months) diagnosed with MAV but I believe I have had it since I was 12. In the past it was tolerable but seemed to worsen with age. I have always struggled with anxiety since birth! I have taken celexa since 2008 but I was prescribed it for Anxiety and do not really know if it’s been helping mav slightly. I have been on Nort 10 mg for about 6 weeks. Somedays I have felt really good, somedays, like around my menstruation I feel like absolute crap. I do not have a neurologist or nurotologist, but was diagnosed by an ENT. I’m not sure if I should seek out others as she did diagnose me straight away with mav. I have not tried any other medications as Nort seemed to help a bit so she wanted me to stay on it. I have not identified any triggers except hormones, stress, and possibly flying although both times I’ve flown have been around the time of my period and/ or stupidly drinking beer. It has never bothered me in the past but now I think I’ll have to remove it from the diet along with other things. :frowning: My boyfriend is putting up with me but feels helpless most of the time. I don’t get spin vertigo but have a rocking/ unbalanced feeling 24/7. Don’t seem to get too many headaches, but occasionally I do. In junior high I had a few migraines with aura, and then one in 2008 but I haven’t had one since then. I’m on this site daily so I’d love to chat with anyone who has similar issues. I am still working as a first grade teacher which is really hard with 20 little kids I have to take care of but I love it and don’t want to give it up. Days can be hard but I push through like so many others! Thanks.

Kimmy

396

Hi there, my name is Alex and I’m new to the forum. I’m 30 yo M and I live in Brooklyn, New York. I never really experienced any dizziness when I was younger, but I have suffered chronic referred pain thru my back, neck, shoulders, arms, head, hands etc. due to a septic right shoulder joint. I never really suffered from overwhelming depression/anxiety or at least was never diagnosed with such. .

Then in January 2013 everything changed for me. For about a month I had noticed a strange feeling like someone was pressing on my shoulders. Then one night after work the whole room started spinning violently. Thought I was gonna die, laid down and eventually it went away. For the next 6 weeks I experienced extreme bouts of vertigo with really intense on a boat feeling between attacks. Bright lights and working at a computer were terrible. As well I had a middle ear infection in the left side with extreme pain. Lost my job cause I couldn’t work at the computer for long bouts. I went to the ENT at Eye and Ear in the City and they diagnosed me with Vestibular Neuritis. They did the VNG, hearing and brain MRI. My first neurologist said my brain looked completely fine. They sent me to a Physical therapist for VRT.

While doing the PT things did start to get more bearable. The vertigo had subsided and the on a boat feeling and feeling of motion mellowed out a good deal. But now I was experiencing terrible pain in the right side of my neck and right side temporalis. I just assumed it was referred pain provoked by all the head turning exercises.I completed the VRT and got some massages that helped with the headache. But still I continued to have good and bad days or sometimes good and bad weeks. In october I had a septoplasty done so that I could breathe better (which definitely helped my breathing). They assured me that it wouldn’t provoke the VN. It wasn’t too bad.

But 2 weeks after I got extremely sick (viral infection in chest/sinus) etc.) And the on a boat feeling got much, much worse. Plus the pain in my left ear was unbearable. I said enough with this and went to the otologist at Eye and Ear. She looked in my ears and all my test results and determined that my ears looked totally fine. So she gave me some valium and sent me to a migraine specialist in the city and they he confirmed that I’ve been suffering from Vestibular Migraine. So I started on 25mg of nortriptyline a week ago. I’m still feeling quite weird, but the ear pain is gone. As well I’ve had another bout of neck/temporalis pain, but I’ve been doing some trigger point and that seems to be subsiding. Hoping that the Nortriptyline will help get me back to baseline.

397

I never suffered with headaches or migraine before at all until 9 months ago. I basically went from super fit to super s**t in 2 months. I now know it had been building up for about 2 years with what I put down to possibly menopause symptoms; flu or hangover type symptoms in the mornings, joint pain and stiffness, fatigue, feeling uncoordinated, night sweats, dry mouth and chronic thirst and urinating, and my memory became terrible! A burglar could have walked straight in as I left all windows and doors wide open in the summer but he probably would have had to put out the fire first from the gas hob, iron and hair straighteners I leave on!

I initially went to my doctor to get my hormones tested and some painkillers for a recurring bad back. Luckily after running his own tests which came back negative apart from irregular red blood cells he referred me to a neurologist straight away as my symptoms were getting progressively worse including a permanent headache which lasted over 2 months and I needed a walking stick as I was so unsteady on my feet. Because I was deteriorating so fast my neurologist put me on gabapentine almost immediately. Thankfully that got rid of the permanent pain in my head and just left me with permanent pressure and brain fog, chronic fatigue, nausea, problems with balance, memory, eyes, night sweats, thirst, swallowing, mispronouncing and slurring words ,back pain, stiff and painfully joints, coordination, shaking hands, twitching, trembling and whole body shakes, numbness, loss of sensitivity to touch, cold sensitivity, pins and needles, bladder (urinating 20+ times a day) and my IBS went up a whole new level. I have to sleep in an elevated position or I feel like I have a heavy weight on my chest and can’t breath properly laying flat.

So after seeing 2 neurologists, including a neuro- otologist, plus masses of tests and scans a suspected migraine variant balance disorder was one possibility but so was Motor Neurone. I saw another 3 for second opinions, EMG and specialist blood screening as my symptoms didn’t completely fit the criteria. And after another load of tests, migraine variant was the winner. I was put on the anti-trigger (no nice food) diet.(4months ago) Which I have stuck to religiously meaning only turkey and vegetables for Christmas dinner. No yorkshires, pigs in blankets, gravey or alcohol, no Christmas pudding cream and custard or cake. No chocolate , which is a killer or cheese. Regular sleep, regular meals no exercise,stress or over exertion.

I’m undergoing VRT which is horrendous but I have stuck with it and I’m currently on 2500mg of gabapentine a day plus tramadol 400mg with some levothyroxine and vitamin d thrown in for good measure as some of the specialist blood tests I had found I had an under active thyroid too which had contributed to me putting on 30lbs in weight!

So I’m actually a baby at this as I’m in the process of trying to stabilize my symptoms most of which affect me 24/7. Others come and go but I am starting to realise it is a very individual disorder in some cases. I don’t know why it started but have been told that travel sickness as a child, not being able to read whilst traveling and the fact I have a brother who suffered from migraine headaches made me a likely candidate. It could have struck at any point in my life. I’m very fortunate that we had private health insurance which sped up a diagnosis and that I only worked part time and we can manage without my salary as I definitely won’t be able to return to the physically demanding job I did. I also count my blessings that it wasn’t motor neurone.

Although I’m virtually housebound at the moment I do feel after 4 months of treatment I’m turning a corner. I haven’t had a migraine attack for just over a month. I’ve had lots of other weird symptoms and ended up with a couple of duvet days by over doing it, which for me means I cooked dinner or baked a cake which is stupid when I think what I used to get done each day. But I have to accept as we all do that that life is over for now. But if I stick to the treatment plan I will get it back or a slightly different version anyway. My balance is a bit better and I can go without my stick at home some days. I look like I’ve drunk a bottle of gin wobbling around but it’s a massive improvement to me! I’ve been told it will be 9-18 months to get things under control and most people get a 70% improvement.

My daughter gets married in 17 months so I’ll stick to the crappy diet, do the physio that makes me feel even worse, and just keep taking the drugs side effects and all because there’s no way I’m missing that! Even if I have to be wheeled in with earplugs and dark glasses I’m going!

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Hi my name is Jamie 38yr male live in the Uk new to this board hoping to find some answers if you guys have any? Well my story in Dec 2012 I came down with a bad stomach upset and pain in the chest which produced a panic attack as I have been reasonably healthy all my life I had never experienced anything like this. I was told by the medical staff that it was indigestion and anxiety. Over the christmas period of that year I was very bad and then it hit me on the boxing day I started feeling very dizzy not a spinning room sensation but a on-board ship feeling, walking on marshmallow, heavy head, fullness in the ears ,wonky vision, stiff neck. My dr suspected I had a inner ear infection and gave me stemetil this had no affect so he referred me to ENT which took 5 month (UK NHS) the dizziness(on-the boat) never left me its been constant since boxing day 2012. The ENT looked at me and did a hearing test and made me walk up and down with my eyes closed and told me there was nothing he could do but to send me to have an MRI again this took a while (NHS) i finally had the MRI dreading the results must be a tumour right! no nothing it came back clear so it was suggested I see a Neurologist (sep 2013). I spoke to the neuro guy and he did similar testing and said he couldnt find anything and suggest I have some VRT so i am waiting again for this to happen(NHS).

My symptoms have not changed and are getting worse and I have not been on any medication for this as I have not been diagnosed with anything. I have lost my job and nearly my family over this and my anxiety levels have hit the roof. I just need to know what I have and how to beat this.

I currently have the On the boat feeling all day no let up in a year sometimes it feels like I am walking on marshmallows, my head is heavy and I get funny sensations like the feeling of a strap over my head and my eye twiching.My ears feel full and when I lye down on the bed at night I feel a hear beat in my ear. My neck feels tight and over the last month I seem vibrate (not a full on shake) when I lye down and my legs are heavy. The only rest bite I have from all symptoms is when I drive the car I dont seem to be on the boat then until I stop and get out then I am back at Sea.

If any one can relate or have any suggestions what you think I might have please drop me a reply

Thanks for your time

Jamie

399

Hi Jamie
Where abouts in the uk are you from? I live in east London and I didn’t really have the same symptoms as you but I have read many posts that have I would suggest you see a nuoro otologist I saw my one Dr Surenthiran privately for my first appointment at black health where he diagnosed me with migraine variant balance disorder then I got my Gp to refer me to his nhs list in gillinham Kent (we in England have that right) he might be able to help you if your up north there is a Dr Silver I think he’s based in Liverpool a few people on here are with him put it this way it can’t hurt right.
Cheers Shenay. X

400

Hi Shenay

Thanks for getting in touch i live in Wales so I guess I would be limited to finding a nuoro otologist and every doctor I have asked about MAV doesnt seem to know much about it its so frustrating! I saw a neurologist and he suggested it was all anxiety and to get on with it which doesnt really help. How are you doing with your symptoms has the Specialist helped you?

Cheers

Jamie