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Ongoing vertigo issues by a newbie


#1

Hi all. My name is Chris, I am 48 years of age, and I am having an ongoing battle with vertigo and insomnia. I’m not having much luck with my medical professionals so I am telling my story so to speak in a faint hope that someone might be able to help in some way because this is now driving me insane. It’s a long winded story so I do apologise.

Balance issue started back in the 1990’s with vertigo attacks leaving me unsteady for around 8 months before it subsided. I have never felt quite the same again though. It stopped me playing tennis at a highish level and I had to learn how to play other sports again. Diagnosed at the time I seem to remember with Benign Paroxysmal Positional Vertigo (BPPV)

In 2007/2008 the same balance/vertigo issue returned. Various specialists visited and tests performed such as MRI, Chest X Ray, Bloods and Heart Scan. Cause of vertigo was unknown but again the general consensus was BBPV. It settled on its own accord ironically after about 8 months.

In March 2012 after a long haul flight a hissing style tinnitus started in right ear. Saw specialist and he concluded issues with balance again with vestibular test showing 60% loss on right hand side although no severe vertigo symptoms reported. Tinnitus has continued to this day. I make the point at this stage that I am partially deaf anyway with total hearing loss in my right ear and around 40% in my left and have been since I was around 2 years old.

In May of 2015 I had a severe vertigo attack which lasted a few hours until settled. The worst experienced since 2007. New type of attack with quicker onset and nausea felt upon closing eyes.

In September 2015 a new type of Tinnitus started with humming in both ears. Sometimes a loud hum in right ear was followed by low but longer hum in left ear. Usually at that time it occurred several times daily.

Late September I had a big vertigo attack at home which lasted a few hours until settled, but I wobbly for some time afterwards.

Early October I had a very bad day. Whilst asleep I had a dream that I was having a vertigo attack and woke up in the middle of having that attack. Feeling subsided and returned to normal within an hour or so. Normal is feeling ok but being pretty unsteady on a permanent basis.

A while later I had another massive attack. The ferocity and quickness of the attack is unusual as you can usually feel them coming on slowly. It left me spinning for several minutes and very unsteady.

After these big attacks the humming tinnitus seemed to have disappeared.

At this time I was also suffering with insomnia. I struggled to get to sleep because a noise, or a movement woke me up as I am dropping off. The noise or movement seemed to be imagined rather than real. Sometimes it was like a like a rush of air on my arm, a noise which can’t be described or the feeling that something briefly touched me.

This then was the pattern from October till June. Sporadic vertigo attacks which slowly became less and less but once in a while there was a feeling of “here we go” and maybe a quick attack that lasted seconds. Other times I just felt unsteady on my feet for days. The insomnia became what I call a “brain zap” where just as I am dropping off to sleep it feels like someone “prods” me awake with an electric prod. I literally jerk awake with a start.

Between November and March I started to see Medical Professionals (GP’s and Consultants). I had an MRI which was clear and a range of blood tests which were normal. After one night when my blood pressure spiked quite high I had some more bloods done and an ECG which was all normal.

I then had some vestibular tests done which showed “Definite reduced function of the inner ear on the left side, principally affecting the lateral semi-circular canal. Therefore lateral movement of the head can cause symptoms.” In a nutshell my horizontal balance is severely compromised, close to non existent. However a procedure to find out what exactly is going on apparently would pose a risk to me hearing so is deemed too risky.

My consultant wasn’t 100% sure but he did mention Menieres Disease although he was actually swaying towards Migraine Assisted Vertigo (MAV). Treatment options were limited. Medication such as Serc (betahistine) and Amitriptyline have been tried with no success.

My other consultant looked into the insomnia and I had two sleep studies done with regard to the possibility of Sleep Apnoea. Both tests returned negative results. His diagnosis was that I am possibly sensitive to sound at night, which is a bit odd considering I am deaf!! So he was no real help there. I continue to use sleeping tablets as I cannot sleep without them. I do not have any odd sounds waking me if I use the tablets although obviously they can make you tired the nest day because they are sedatives, so not an ideal long term proposal.

Obviously at this point I am a bit of a mess. I was on Employment Support Allowance because my GP had deemed me not fit to work. Unfortunately the Department of Work and Pensions after a farcical Work Capability Medical then deemed me fit for work! I am at the moment appealing that decision but that is another story. I am now claiming JSA but am struggling to find an employer who will employ someone prone to vertigo attacks and not sleeping!!

This takes us to current day. The vertigo had improved a little recently with a handful of wobbly moments but no major attacks. I am never 100% but I am hoping it would continue improving. The strange thing is that once again the timescale was about 8 months between onset and improvement which started to make me think about some sort of virus being at work! The insomnia hasn’t really improved. I had two nights a couple of weeks ago that I fell asleep without a pill which was like finding the holy grail, but it was short-lived and brain zaps, noises or just failing to fall asleep reared its ugly head again.

Then we come to this weekend. Friday night was a night without a pill. Just as I was falling asleep a massive bang went off in my head. It was like a gunshot, incredibly loud and I was awoken with my heart pounding and a cold sweat. I turned over and tried to sleep on my other side and another noise brought me to full consciousness again. Once again it was a very restless night.

Then in the morning I was sitting at my PC when the rumbles of a vertigo attack started. I sat there trying to ride it out as usual but this one suddenly wouldn’t go away. Usually they last a few minutes then subside but I was still sitting there 20 minutes later. I eventually took myself off to bed where I lay for another half an hour or so with everything spinning. Eventually I dropped off to sleep (yep incredible) and when I woke two hours later the attack had subsided. How on earth did I sleep naturally in the afternoon without those usual noises waking me up?! That never happens at night!

The joy was short-lived. A few hours later an attack started again and once more the spinning didn’t stop for around 45 minutes. Both of these attacks lasted longer than the usual. Another thing I noticed is that is a normal attack if I close my eyes things still spin and I feel nauseous if I close my eyes. With these though closing my eyes is the only thing that I can do and I don’t feel nauseous. Nausea only occurs if I keep my eyes open. So once again a change in symptom because after a few months of improvement the attacks a bigger and last longer than ever. Not only that the classic “bang” style noise of “Exploding Head Syndrome” rears its ugly head. Two major different symptoms of two ongoing afflictions makes me wonder if the two are 100% related.

It’s devastated me because I at least thought the vertigo was improving. Yet now I will have to visit my GP again. I may ask to see a cardiologist and maybe someone who deals in allergies in an effort to see what actually sets this all off because right now I cannot see the end in sight,.

Sorry for such a long post but I really don’t know where to turn and I am hoping that someone out there may have experienced something similar because at the moment I feel like it’s just me with these problems!


How does everyone with vertigo survive financially?
#2

Hi Chris. Wow, that’s quite a story…I feel so bad for you! While your situation is MUCH more severe than mine, I just wanted to say that my last BPPV attack was the most severe I had ever had, and I had to sleep in a chair for four nights straight so that I wouldn’t have the vertigo and throw-up. It just so happened, that my first physical therapy visit was already set for that week, so the therapist was able to perform the Epley maneuver and within a couple of days the vertigo subsided. Where I was previously having vertigo spells about once or twice a month (each lasting a few days) I have not had true vertigo since. I have been diagnosed with MAV & BPPV.

I hope you find some relief soon, and I hope someone else in the forum can offer some helpful advice. I’m still a newbie as well… Take care!


#3

Hi there guys,
I really feel for you and know how it is to have chronic dizziness. I think my case is slightly different because I didn’t have intense tinnitus except strange loud sensitivity (very bad) at the start of the illness which was accompanied by severe head pressure - and by light sensitivity to any fluorescents. Natural light was better for sure but intense sunlight was too much on my head in the beginning. I’ve vastly improved by taking magnesium glycerinate at 800mg spit in 2 doses per day (KAL brand is what I use), 400mg of CoQ10 at the start of the day but sometimes split up in the morning and 400mg of B2 - St Johns Wort helps me too at 1 capsule 3x a day (GAIA brand). Supplements aren’t cheap and medicine can sometimes be more effective for some people on this forum but I was just too sensitive to most and I want to have kids so I’m hoping the supplement route might be safer, though I’m not completely sure. I feel almost normal on all the above sups as long as I do not take too much dairy or calcium in the day and also avoid too much caffeine and high tyramine foods like nuts and bananas , yogurt and fermented things like wine and beer. It’s a very very difficult thing to have, since doctors and most people without experience with it just say its anxiety but don’t understand that we can look healthy or even very athletic but be very ill a lot of the time and in chronic pain until we find a solution. I used to have silent migraines that were accompanied by chronic dizziness (and a floating sensation super weird) but that turned into more of a chronic facial and jaw pain and eye pressure if I have any stimulation from fluorescent lights in a day unless I’m taking supplements. Gabapentin at a low dose really helped me in terms of medications but I’d recommend that new users see a neurologist and see if nortripyline at a low dose is something they can cope with - or maybe zoloft (by itself or combination with other stuff) as the antidepressants seem to work really well for MAV. Anti seizure drugs are the other route but they are a bit more intense in terms of changing your personality, as far as my experience goes - good and bad. Gabapentin took away my anxiety entirely but I didn’t feel like myself on it. Stay strong. This is a good forum where we can support one another and also its useful for gleaning advice from past members in terms of searching for their experience with different treatments - we’re all different though and have different symptoms slightly with MAV so it does help to remember our individuality too, I suppose. xx PS Gabapentin helped me sleep btw, nortriptyline is also very good - better even - for that if you take it 12 hours before you want to wake up


#4

Thanks for both your replies. Not sure where most on this site are based but I am in the UK. I didn’t really check when I signed to the site I was just looking for people who might have been in the same boat.

Liv85. It’s interesting what you say about a “floating sensation”. That is pretty much what I experience in that time between feeling “normal” and having a “full on attack” which is most of the time. It’s like almost an out of body experience and I often compare it to a movie that has been made with a hand held camera where every step you take causes movement. I have a day when you suddenly think, “great I am ok, things must be getting better”, then overnight the floating feeling returns and you realise that things aren’t getting better.

I asked my chemist about supplements and St Johns Wort after reading your posts above but he said to discuss with my GP as they can react with other medication and I am on 2-6 pills a day due to other conditions so will see what he says.

It’s very frustrating though because I was on ESA benefit here due to not being able to work. Then after a medical assessment they declared I was fit for work because my condition is controlled and controllable (which it isn’t) so lost my benefit. They then sent me a disablement advisor to find me work and they said that no employer would employ me because I can’t guarantee that I won’t have a vertigo attack so can’t guarantee attendance, doing the job to the required standard and health and safety. So one hand says I am fit to work, the other says I am not. You couldn’t make it up and its just stress after stress on top of an already stressful condition!!


#5

The first time I had a MAV attack it was exactly a kind of light headed, floaty, out of body experience (only to be told at GPs it was a virus!)


#6

Hey Chris,
The floating sensation does go away don’t worry :slight_smile: It took a while, maybe a year but it does ebb away. The main thing is to view this as a problem of calming an overexcited and overexcitable brain. The headache diet is helpful (google “How to Heal your Headache” book) but I am able to eat almost anything I want except too much yogurt or high tyramine foods like nuts in one day - caffeine and red wine are probably the worst along with citric acid for me - as long as I remember to take 400mg of chelated magnesium (KAL brand is my favorite) in the morning along with 400mg of CoQ10. If I have a high stress day that might expose me to a ton of fluorescents (my biggest trigger), I’ll take an extra 400mg of mag in the evening and sometimes 400mg of B2 which is also helpful but it may cause me GI issues. I couldn’t reckon whether it was the B2 or high dose CoQ10 doing it to me because the magnesium glycerinate doesn’t cause GI issues typically. It’s other types of magnesium that does. I also take a calcium supplement (regular dose) with D in it once a day to balance out things. Too much dairy seems to be a problem for me. Try these supplements because the absorbable type of CQ10 and magnesium really has helped me so much I can do almost anything I used to do again, albeit I have to take care of myself more and not be as carefree. It’s okay though. I returned to eating meat again too to make sure I am not b12 deficient. Good luck!!! You will feel better. Time helps no matter what and eat well. Some medicines like gabapentin and nortripyline can also help. St Johns Wort helps some symptoms too but it made me more anxious and bloated personally so I stopped it but everyone is different.

Liv


#7

The funny thing is I had exactly this issue back when I was in my 20’s and again around 8 years ago and it lasted spot on 8 months. This time around it was actually improving after 8 months and then that 3 hour attack a few weeks ago seems to have put me back. I can’t actually see anything that’s a trigger, no particular foods or drinks, it’s very unpredictable. I am doing a bit of an experiment and noticing that some ibuprofen seems to improve things, but I am not sure if that’s the ibuprofen or just luck.


#8

hello chris

i am a newbie to and have struggled with vertigo for the last 5 years. I’m also in the UK. Do you have a diagnosis? MAV? Menieres? Sometimes balance disorders can be very complex, some people have both MAV and Menieres and so it can be very difficult to get a proper diagnosis. I think thats important because some of the treatments for MAV and Menieres are different.

I don’t know where you live but the Menieres society has a list of doctors who specialise in balance conditions

http://www.menieres.org.uk/information-and-support/information-for-health-professionals

if you scroll down the page you will find the list. If you can ask your GP for a referral to one. I think you need some help with getting a diagnosis and then you can explore some treatments. Hope this helps.


#9

Hi Chris,

I didn’t think I had any food triggers, but I read the “Heal Your Headache” book and referred to the list from my doctor, so I cut out caffeine, chocolate, bananas, nuts, aged cheeses, msg and red wine. I still didn’t think any of that had helped. However, two days ago I ate some packaged rice mix (certain to have msg hidden in there somewhere) and a very large piece of chocolate cake (moment of weakness) and for the last two days, I’ve felt horrible. I guess I didn’t want to believe it, but food really does play a huge factor in the MAV world. I hope you can find some help but keep in mind it does take time. I’m still working through figuring out what works and what does not. The supplements mention by many definitely help. I’m off of all the supplements this week b/c of a test next week, and I can’t wait to get back on them.


#10

But then again could all be confirmation bias. Mind you my recent mini-relapse was after two days when I worked longer hours and had a strong Italian coffee on both days. I felt fine on those days then next day, bam!. Who knows. What does definitely work for me is exercise. Sometimes it’s the LAST thing you feel like doing but you can sometimes feel much better after an hour of walking. So get out there!


#11

Ive had these. Definitely vestibular migraine. You have to keep your eyes open until the attack subsides and that can mean hours or all of your sleep lost? They always used to hit me after 9pm weirdly which is one of the reasons Im convinced they are migraines. I’ve not, touch wood, had one of those attacks since starting amitriptyline (even 10mg banished them). Shame it didnt work for you. Amitriptyline has several features which make it almost uniquely good for this condition. I find it almost guarantees a good nights sleep which is critical in reducing the migraines. Good luck!!


#12

Hi there, Last post for a little while because I have to go on a trip overseas soon with less regular internet (wish me luck!) but I second the exercise comment 100%. The best thing I could do once I started to feel better on supplements - and before that gabapentin - was to start pushing my body in exercise again and see that we’re strong except for our overactive head nerves. It’s helpful to relax from the problem and get distracted from it for a time in the day by doing exercise and also to push yourself a bit and get the confidence that you’re not going to fall over and you’re capable of doing things you could do before. My biggest challenge might be downhill skiing which I used to be great at, but now I’m a bit nervous about obviously – I won’t do that for a while. But I do think I could manage intermediate slopes now maybe with the supplements. I’m just grateful to have all my limbs. We can walk at least. It’s important to stay as positive as possible but I know how hard it can be before you start to feel better. Hope you guys feel better soon…it’s definitely a challenging illness but can be overcome. xx


#13

Hi all, Just an update. Had been taking Pizitofen for a while and symptoms had slightly improved. I then ran out of pills and got lazy and some symptoms returned including two major vertigo attacks that lasted several hours. More severe than I have had before, so I went back to the GP for some more Pizitofen and also a referral back to ENT.

The symptoms haven’t been overly bad since going back on the pills, although I am not right and things are permanently a bit wobbly, but here is the thing. Saw an ENT consultant this Wednesday. He asked the usual questions and promised to push through with some vestibular rehabilitation and also promised to take a look through my case files. Whilst I was there he checked a few things out and I can only describe it as massaged my left ear, to see if it brought on symptoms. The wall shook a tad but nothing major.

However the next day the loud rumbling tinnitus started again and I have now worked out that this is my early warning system of an impending vertigo attack (anyone else get this?) I then had a terrible spinning attack that didn’t seem to go so I just went to bed. Next day I was ok again but once again later in the day rumbling sounds once again preceded another attack that lasted around an hour. However this time I stumbled across something. For some reason I looked over my right shoulder and everything was still !! Looked over my left shoulder and everything was spinning. Straight ahead was somewhere in the middle. Same happened if I just used my eyes to look left an right. I thought that this may be a sign of which side is a problem but today with another hour long attack kicking in the same thing happened BUT after a while it switched sides. So to start with right was steady and left was spinning and then it switched to right was spinning but left was steady with middle somewhere between the two - if you get my meaning?!?! This is really weird because I haven’t noticed this before, although I probably wasn’t looking for it. It’s strange because these attacks have happened since the consultant massaged my ear to try and bring symptoms on so I am not sure if it’s related or just a coincidence. Anyone else experience this difference side to side?

It’s all very odd. In many ways my symptoms are typical of MAV and then some aren’t whereas my symptoms are also typical of Meniere’s but I don’t have the nausea and sickness. Been a year now and I can’t see much light at the end of the tunnel.


#14

i have a strange mix too. No fullness or involuntary attack episodes (but I do get positional spins sometimes which I can chose to not experience by staying away from the problem position for a while although in bed that is sometimes tricky), but I have fluctuating tinnitus and documented HF hearing loss. I’ve said it before, Menieres and MAV are just defined by clusters of symptoms. I suspect a similar mechanism is responsible for both but different people get impacted differently.

My theory about insomnia is a combo of stress, anxiety, plus potentially symptoms happening when you move in bed.


#15

Thanks for the reply. Had another bad day today with spinning turning to the left, turning to the right things were steady and looking straight ahead it was between the two,. I’ll have to walk and watch TV looking over my right shoulder at this rate!!

Am I right in thinking that if you have MAV or Menieres then no medical manoeuvres such as the Epley, Brandt-Daroff or Semont will work and they are just used for BPPV (Benign paroxysmal positional vertigo) ?


#16

You can have both at same time so might work. However I believe that many MAV and Menieres cases are both caused by blockages by the very same loose rocks. If you do some manoeuvres logic suggests this could either improve or worsen your condition. If you read Hain he states that manoeuvres can in rare cases cause hydrops.


#17

Well it’s getting progressively worse. Now I am pretty much wobbly 24 hours a day and my vertigo attacks are longer although not full spinning. Really weird though this sensation of looking to the left and it’s the carousel/merry go round style spin (as I call it), in the middle not as bad but not great but looking to the right everything is still. Can find nothing online with these symptoms because if I google “looking to the left causes vertigo” BBPV just keeps popping up. I’m even wondering now that as it’s getting worse it can’t be MAV or Menieres but could it be Multiple Scelrosis? No consultant has suggested that and I hope that my MRI last Christmas may have spotted that? I’m at a loss because it was hard enough having sporadic episodes but non stop is exhausting.


#18

Ear trouble causes a surprising amount of it! Don’t worry about any other cause. I’m told most ears settle with time.


#19

If you had MS, Your MRI would’ve shown MS according to my neuro


#20

I am brand new to this site - just joined tonight. I read all of your symptoms you’ve been suffering and am really sorry for everything you’ve been going through. I was diagnosed with Meniere’s Disease 14 years ago and MAV last year, so am one who suffers from both. It certainly sounds to me like you may also. My recommendation is to find a good Otolaryngologist who can treat both - they are out there and the good ones can. I have had just about every Meniere’s treatment out there from diuretics to surgery to injections; I lost my hearing completely in one ear and now wear a cochlear implant which has made a world of difference. My MAV is mostly under control with 125 mg of Topamax, and I am seeing a new doctor who has me starting the migraine diet and vestibular therapy. I take Valium in various doses when I do get vertigo attacks - the dose depends on the severity of the attack. I have suffered everything you have except insomnia over the years, but little by little with the right treatments I am able to live life fairly normally (although I have had to modify a lot of my exercise and gave up tennis like you did). Good luck to you and I hope you can get things under control soon.