Whats going on with me?

Specific Illnesses & Conditions VM/MAV
1

Gosh, I do not know where to start, so I will tell my story then I welcome any and all comment and help.

Today is September the 7th 2010. Exactly 5 weeks ago I went to bed feeling normal, when my alarm went off the next morning to get up and get ready for church, I reached over and shut it off, sat up in bed, swung my legs over the side of the bed and stood up…then all hell broke loose; I got really dizzy, the room started spinning, and I instantly got sick, and crawled to the bathroom because I could not walk. That’s where I stayed for the next 4 hours vomiting and spinning in circles. It was horrible, one of the worst experiences I have been through in my entire life.

After the 4 hours had passed, I felt slightly better, not much but slightly, enough to move from the bathroom to the bed where I stayed all day. At about 2 in the morning I awoke to go to the bathroom at which time this started all over again. I woke my wife up and had her take me to the hospital emergency room. My wife had to call a friend of ours to come over and help me to the car so we could get to the hospital. It was an awful 10 minute ride to the hospital, I was dizzy, spinning, throwing up etc. horrible time!! There at the hospital they did a CAT scan, drew blood, and hooked me up to a heart monitor, and found nothing wrong as a result of those tests. The on call Dr. told me that it is probably something to do with the inner ear which controls balance. So I left there with drugs to calm the symptoms of dizziness and nausea. They worked, but I was still not right. Two day later I went to my family Dr and he more or less told me the same thing: inner ear problem. He prescribed Prednisone and Valium which made me feel like a zombie.

Four days later I was still feeling awful so I went back to my family Dr. He said gosh, this should be gone by now, so he was concerned and sent me to an Ear, Nose and Throat specialist…the ENT Dr. did a hearing test, and all was fine there. They then sent me to a Balance Center where a therapist tilted me up and down making me really dizzy but only for a very short time. I was told by her that I had these crystals in my inner ear that were out of place and therefore I have what they call BPPV and the tilting of my head and body would move these crystals back into place. Well, I walked out of that therapy session feeling instantly about 75% better than when I came in, but still all was not well. I have been back there four times for this tilting therapy since then. I have today gone through a 3 hour balance test. I was told by the specialist today that he believes that I have MAV associated with Migraine. I dont even have headaches! I don’t get it.

My symptoms right now are: when I bend over or stand up from bending over, things are a little shaky, but I do not spin or get real dizzy…when I walk, it is like my eyes are bouncing inside my head with every step, and it is hard to concentrate on where I am walking to because of this…I now have the ringing in my ears, I guess it is called tinnitus, which is constantly there and audible…flourescent lights are a nightmare, especially when walking into a store with a lot of them. I have been off work now for 5 weeks, and do not know how I will be able cope with this inside of a factory. I am looking for answers, ideas or anything that will help me with this. If these symptoms sound familiar to you, please write me back.

Thank you, John

2

Hi John,

Many of your symptoms sound familiar to me and no doubt many others on this board. It sounds like you have a very switched on doctor if they have flagged MAV this early in the piece (many of us on this board have taken years to get the diagnosis).

It sounds like because you don’t have headaches you may be doubting the migraine diagnosis. There is a widely held misconception that migraine is only about headache. That is absolutely NOT the case. Headache is but one component of migraine and many (myself included) rarely if ever experience headache as part of our migraines.

The second thing to consider is that it is not necessarily the case that you have BPPV OR migraine. You can definitely have more than one thing going on at any one time.

Hope that helps,
Victoria

3

Hi John,

Welcome to mvertigo and sorry to hear of your dizzy nightmare. It’s not a good idea to post your phone number on the main board but you are welcome to via private message (PM) to somebody if you wish.

Reading your story it sounds to me like you are suffering mainly from BPPV but the light sensitivity definitely sounds migrainous. Both migraine and BPPV are highly comorbid conditions – that is, there’s a high association between the two. Migraine is 3 times more likely to produce an idiopathic BPPV attack than any other factor including a bump on the head or age. The term is “idiopathic” meaning there is no apparent cause that you can clearly identify. In this situation it could very likely be migraine. On what basis did the ENT conclude migraine? Can you give us more information?

Second, I’m not convinced you have cleared all of the rocks out of your ear. Do you know precisely which ear has the BPPV? You can do some exercises yourself at home to elimiante any debris in the ear – called the Modified Epley Procedure or MEP. You can read about it here:

http://mvertigo.cloudapp.net/t/self-treatment-of-bppv-modified-epley-procedure-mep/1013

Try doing the MEP as the study recommends and see if things clear up. If not, and migraine-type symptoms continue, let us know.

Good luck and it’s important to NOT STRESS OUT. Stress will exacerbate your symptoms by orders of magnitude. Hard I know but you have to remain calm. Get some valium too if you are feeling excessively stressed about this to help you remove the dizziness and calm down.

Scott

4

Gee’sJohn ,
yu’ve been thru hell and back , I’m so sorry youre going thru this.
Eye’s bouncing "oh yeh"nasty!
I’m glad you’ve found this site and I’m sure you’l get great advice and information , FROM THE HORSES MOUTH!

Stay sane.
it wont last forever.
jen

5

— Begin quote from “scott”

Try doing the MEP as the study recommends and see if things clear up

— End quote

Scott, how many times are you meant to do the MEP? Once, once a day, once a week?
I’m gonna give this ago. I had the Epley done on me once around a year ago, didnt help though

Cheers

Chris

6

Hi John,

I also work in a factory or at this point I should probably say I did work in a factory. :x I work in an auto assembly plant.

I first got an attack of this in Feb. 2009 and have only been able to work a handful of days since that time. Because of the bright lights, noise and the amount of stuff moving in my plant it triggers my symptoms and after having a bad vertigo attack last August (2009) in the plant they have not accomodated me with work since that time as it is a dangerous place to be if you don’t have your wits about you. Even without the full vertigo attack it is difficult to be able to do all the tasks required in the limited time we have because of the cognitive dysfunction associated with MAV and also because I also have a problem with bending and head movements right or left.

As far as the migraine headache goes I have never had one either. You don’t need to have migraine headache to suffer with MAV.

I have an appt. coming up in November with a NeurOTOlogist so I am hoping he will be able to help me with my symptoms so that one day I can get back to work and life as I once knew it. :slight_smile: I am in the Toronto area and we don’t have a lot of Neurotologists here and the ones we have are difficult to book an appt. with so I am sooooo happy that I will finally see one. My ENT diagnosed MAV but the Neurologist I saw doesn’t agree. My symptoms make me a poster child for MAV so I agree with the ENT. Getting a diagnosis from the Neurotologist who is an expert in dizzy disorders will hopefully open the door for treatment for me.

Good luck to you.

7

Hi, I’m so sorry you have to be here, but it looks like you have some great doctors to work with.

Your symptoms sound very familiar to me. One day in 2006, I got out of bed and soon after, the room was spinning so fast that I was running into walls and fell to the floor. I was later diagnosed with both BPPV and MAV. My BPPV happens when I turn my head funny, get out of bed too quickly, etc, and it feels like the room is spinning. I did go to someone for a therapy session, but I’ve had the most success just watching how I turn my head or get up, and quickly turning it back if I start to feel a spinning spell coming on. It’s never fully gone away, but I can control it very well this way.

As for the MAV, it didn’t start for me until a few months after my first BPPV attack. I don’t know exactly how the two are connected, but that’s how it seems to be, at least for me. I do NOT have migraine headaches at all, which is why I didn’t believe my MAV diagnosis at first. However, I do have a lot of other symptoms you described (sensitivity to fluorescent lights, bouncing sensation when I walk), among other symptoms that others on this board have felt. In fact, it wasn’t until I found this board that I really believed my diagnosis.

For me, I eventually realized that it was a certain hormone medication that I was on that caused all of this. Although I feel much better after going off the pills, I definitely still have BPPV (but I’m just careful about movement to avoid the spin spells), and I do sometimes have MAV symptoms under certain situations (bright lights, crowded rooms, if I don’t eat or sleep properly). Some people have success with migraine diets, others go on migraine medications or vitamins, avoid triggers, etc. It’s all a matter of finding what works for you.

Again, I’m sorry you have to be here, but I’m glad you were able to find us, and I hope you start feeling better soon.

8

— Begin quote from “CJL”

— Begin quote from “scott”

Try doing the MEP as the study recommends and see if things clear up

— End quote

Scott, how many times are you meant to do the MEP? Once, once a day, once a week?
I’m gonna give this ago. I had the Epley done on me once around a year ago, didnt help though.

— End quote

CJL,

In one of these papers they state: “Patients performed the exercise three times daily until positional vertigo had ceased for at least 24 hours.”

Here’s links to both of them:

http://www.glycemicindex.com/sd/MEP_04.pdf

http://www.glycemicindex.com/sd/MEP_05.pdf

Scott

9

Mine is just as complicated and detailed as any other story here and yes sometimes its hard to know where to start. My name is Kris and I’am now only 31 years old.
In about late 2005/early 2006 I was diagnosed with Keratoconous (Cornea Related eye Disease in my Right Eye), In 2006 despite having put up with pain and taking Nurofen Plus nearly every day for two years and not knowing why - I was diagnosed with Psoriatic Arthritis and referred to a Rheumatoligist. The Keratoconous I was informed the only thing at the time that would assist my sight was hard contact lens. The Psoriatic Arthritis I was put on quite a few different medications to combat the Arthritis which included: Methotrexate 10mg (2 1/2 tablets once every wednesday), Prednisone 5mg ( once a day), Somac 20mg (once a day), and Folic Acid 5mg ( wkds only). The Psoriatic Arthritis treatment continued at that point generally without too many problems from 2006 until March/April 2009. I then had a white hard lump show up on my left index finger that when i touched it i got really light headed and dizzy. It literally made me pass out luckily on my bed, i woke up the next morning to go to work and my left index finger had turned purple and the lump has decreased in size - went to work but went to my doctors that afternoon, he was unsure exactly what happened and i was sent to the St Vincents Hospital in Sydney. They started running tests, blood tests, ECG’s, Scans on my finger etc being aware of my condition of psoriatic arthritis and the medications i was taking ! I was admitted to St Vincents hospital just before Easter in 2009 whilst they ran tests after tests, i think that first night i had something like 30 vials of blood taken from my arms. I had ultra sounds of my heart, more blood, doppler tests, ultra sounds on my fingers, arms, legs etc - whilst they were searching for clotting as they suspected it was a mini embolism in my finger. They found positive Cardiolipin test results in my blood and I had been then told to be discharged from hospital I would need to start taking Clexane 100mg injections (once a day) and low dose Cartia Asprin (100mg) tablets, this was in addition to my current Arthritis Medications. So then I had further tests ran as an outpatient and further had a CT Scan, MRI Brain Scan and Transoesphagal EchoCardiography (basically a tube with a camera to look inside my heart … again trying to find if i had clotting anywhere else. All these test results come back clear except for the positive cardiolipin found in the blood and I was diagnosed at that point with “ANTI-CARDIOLIPIN ANTIBODY SYNDROME”. So from that point I had to see Vascular Specialist where I remained on Clexane injections (100mg daily dose) for 7 months before I was advised to stop taking it. I was to remain on the Cartia 100mg Low Dose Asprin which I continued to take. 5 months after being discharged from hospital which would be September 2009 I had to return to my rheumatoligist for a follow up assessment for my Psoriatic Arthritis, the medications didnt seem to be having the same effect as they had started out too, so i was put on two more medications which included Arava 20mg (once daily) and Mobic 15mg (one tablet daily).

10

So now I’m taking a total of 8 pretty strong medicines nearly every day with the exception of the Methotrexate and Folic Acid. During these periods I was getting cold and flu symptoms, diarrhoea and other symptoms which at the time i thought nothing of, not realising maybe it was my medications. I continued on these medications 8 medications. March 26th 2010, I was at work in meetings and onboard doing ship checks on Navy Vessels alongside and i was feeling dizzy as, really hot, with hot flushes, and this was causing balance problems, at first i thought i was just coming down with a virus but it didnt go away, it got so bad at work i was feeling like i was going to collapse and face plant into the ground/floor/fall over the side of the ship i was on - which is not good for the work environment i work in, so I went to my doctor and he diagnosed me with fluid on my left ear and i was put on antibiotics, serc and stemetil to try to get rid of it however again that didnt help and he advised me if I experience any tingling sensations im to go back to hospital. I then went to St Vincents Hospital in Sydney this time with a different problem to last time - again they started to run tests to try to find out where th dizziness was coming from. I had a CT Scan and a few other tests run whilst in hospital and again they couldnt find anything - I had told them my doctor told me i had fluid on my left ear and i was put on antibiotics, serc and stemetil in addition to all the medications i was on but the hospital ENT registrars didnt agree with the doctor diagnosis probably cause those medications had gotten rid of them… i started to feel slightly better after two days they discharged me still not knowing why this was happening and i was still dizzy/ off balance and feeling like i was in rough seas on a navy ship, with crowds of people really bothering me, almost this symptom come across as anxious… in fact I was treated as if I was suffering with Anxiety and there was nothing wrong with me - i was discharged from the hospital and told by the Senior Neurologist at St Vincents Hospital not to return to ER as my case is far too complex and there is nothing they can do for me… i need to see my Rhematoligist/ GP. I then asked my rheumoligist explaining all the symptoms including diarrhoea, flu type symptoms, the fluid on the ear diagnosis, the dizziness/unbalance/disequilibrium but she didnt believe any of these were caused by the medications i was put on by her and my vascular specialist. I then was sent to the ENT Specialist at St Vincents Clinic where he also agreed with the hospital there was nothing wrong with my ears, nose or throat causing any of my dizziness and balance problems - and yes this was starting to cause me stress as I was worried about loosing my job and then how I would pay my medical bills. I couldnt believe it wasnt contributed too by my ears so he referred me to have an ENG and audiology test on my ears etc at St Vincents Hospital Dizziness and Balance Centre, where both those test results also came back clear. So from that point Id been back and forth nearly every week to my doctor he suspected Balance Benign Vertigo however he had already tried the treatment for that with Serc and Stemetil and it didnt work. I stopped taking all medications bar the Prednisone in April 2010 as i believed they were causing the dizziness… So I started researching for information on the net and stumbled across some information that this can be caused from Spine, Neck and Back Problems - so i then started seeing a chiropractor… the treatment really helped but i was having to see her 3 times a week and I did that for quite some time with my back starting to actually hurt more than when i first started going there so having had all those xrays with me, i decided to change from chiropractor to osteopath as it was the only thing providing me with relief to keep me being able to at least go to work on job restrictions of course, where im not allowed to go on the ships ! His treatment is much better and it really does help, however this has been seriously debilitating and has been going on since March 2010… and yes its helping but its not going away. I told my doctor I was seeing the osteopath and he then wanted a second opinion from a Neuroligist so I had to wait until November 2010 to get in to see the Neuroligist at the Prince of Wales Hospital in Randwick. He listened to all my symptoms, asking me many many questions himself and conducted his own Rhombs test and other physical examinations, while i would tell him the effects of what he was doing in relation to the dizziness/inbalance etc. So it took from 26th March 2010 and alot of money later before I got to see this Neuroligist at Prince of Wales Hospital in November 2010 paid by medicare till I got an actual proper diagnosis of Migraneous Vertigo. I now have Keratocnous, Psoriatic Arthritis, Anti-Cardiolipin Antibody Syndrome and Migraneous Vertigo, but still am struglling things that i once used to take for granted. I havent been able to actually physically go shopping much throughout this period, ive had to catch taxis to work that have air con, i have had huge sensitivity to the sun and heat, i have had numbness and tingling in my face, i havent been able to catch trains at all since i got this, cant do crowded spaces or places that get hot quickly. I used to be once an outgoing and social being - and this has seriously debilitated to change me completely. I’m trying to maintain positive but sometimes this has been incredibly frustrating…to the point where people think that i might need a carer in the next 5 years and im really concerned. After all Ive told you here im wondering if this is more serious aswell…i have read up too on lots of the types of vertigo etc… but I’m only 31 years old but feel like im 50/60 years old and dont know if maybe all these conditions are linked and its something more serious like MS ( which has been missed). I would have thought MS can be detected via CT Scans or MRI BRain Scans which all my results were clear - but i have read there are cases where people have been diagnosed with Arthritis and Vertigo and have later on years down the trick found out they actually have MS. I now have 4 different conditions, 3 of them chronic and one a cornea related eye disease is this somehow maybe all connected leading into something more serious that has been missed ?? Also are there any services provided in Sydney for people with Chronic Illnesses where they can get help… im not disabled but i cant walk huge distances due to the Migraneous Vertigo cause i conccentrate so hard walking with my balance problems??

11

Oh also note from the time i stopped taking my medications in April… for my arthritis im only taking natural products like fish oil, shark cartilliage, olive leaf extract etc for my arthritis cause im a bit jubious about taking any meds with the Migraneous Vertigo since I believe all the medications they had me on at once has caused this problem im trying to avoid medications… I was told to take Feverfew Migraine Aid for the awful headaches, and put on Vitamins B2 (nerves etc), Ribolflavin, B12 and B6 i think, also to take Magnesium . I ve noticed that when I get sick in particular go to the doctor and find out i have an ear infection it sets it all off badly again… I just recently had a Middle Ear infection and a Throat Infection and following that cleared up where i was feeling reasonable with the Migraneous Vertigo - it has now triggered it again and today was an awful day - i was in a meeting with the boss and the motion sickness from the vertigo was so bad i felt so nauseous that i felt like i was going to throw up any minute… but previous experience tells me that doesnt happen and i felt like my body apart from the awful rocking was sometimes being pulled in a way to one side more than the other - today was an awful day - so i think my ear infection, throat infection cleared up, now my vertigo stuff has kicked in again big time so balance is absolutely shit again, sore neck and headaches, nausea and diarrhoea…Will this ever stop ?

12

Hi Krissi,

Welcome to mvertigo.

You appear to have a number of medical issues going on so it wouldn’t be wise for anyone here to try and give you advice for so many conditions until you get a more clear diagnosis. However, you can try a number of lifestyle modifications which will do you no harm at all and may assist in keeping any migraine issues under control. There is a lot of information on this site, much of it in the ‘Information Vault’ but for starters you might want to look here: http://mvertigo.cloudapp.net/t/vestibular-migraine-survival-guide-2014/2244

I notice you are in Sydney and appear to have been treated mostly in the Eastern Suburbs. I believe Dr Shawn Watston at Prince of Wales in Randwick is meant to be knowledgable on migraine. The “guru” is Dr Halmagyi at RPA.

Good luck and hang in there,

Vic

13

Yes thanks Vic, actually Dr Shaun Watson (Neurologist at the Prince of Wales) is the neuroligist that did help me - he was very thorough with his examination unlike how i was treated at st vincents. He listened to everything i said and asked me many questions etc himself before giving me the Migraneous Vertigo verdict… I was put on a course of natural products to help with this like Riboflavin, B2, B6 and B12, Migraine Aid etc as i wasnt keen to use conventional medicines - however im due to see him again this month and i may not have an option but to start taking Migraine medication… hopefully this will rid me of all these dreadful symptoms and the vertigo… I was very pleased with the help he provided me as prior to that all that time i had not received any diagnosis and it was highly discomforting not knowing why or whats happening and not really knowing what it is to deal with it properly… so things have been a bit easier having received his diagnosis as i know of things that can trigger it !! I just hope this doesnt turn into something even more serious than what i already have or know about !!

I always try to stay positive and hope that this will go away as its been affecting my life since March last year pretty much 24/7 some days better than over !
I will check out your link, greatly appreciated :slight_smile: