Hi from a newbie

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!

Hi There, I have a friend who has similar episodic severe vertigo. Mine is more just the after effects of the initial stack. His also has tinnitus. You may be experiencing viral illness that is recurrent … I would recommend getting your vitamin D levels checked, vitamin b12 checked and take plenty of vitamin C and when a big attack is coming, I’d recommend staying away swim high arginine food and eat high lysine foods as that helps defeat viruses. I believe viruses are at root of a plethora of inner ear and nerve problems. valicyclovir might also be useful, as some (few) doctors understand the viral pathology of our problems. I personally do very well on magnesium 800mg a day and St. John’s wort (anti viral) as well as 400 mg of coq10 day. Liv

Since I can’t be sure of what is causing all these problems for us , have you tried elimination of gluten and all dairy? Do you see any correlation with things you eat and the symptoms you get? Do the attacks come when you are feeling ill? ( like during a time of low immunity)? Or is that irrelevant to the timing of the spells? I hope you’re feeling better!

No correlation as to what I eat and when the attacks occur or as to how I feel generally. Very much out of the blue. Funnily enough this week has not been as bad and I am hoping I may have stumbled across something. I had a bit of a wobbly day late last week and had a headache with it so I took a nurofen (ibuprofen). The wobbliness faded within an hour or so. Couple of days later I was very wobbly with the old floating sensation so took a couple of ibuprofen and once again the wobbliness subsided.

So I went to my GP and mentioned this stating that as one consultant had said that it could be MAV then could a headache pill help? He thought it possible and said there was nothing wrong with trying a proper migraine medication. So last night I tried one tablet of Pizotifen along with mu usual other medication and so far today I have no wobbliness. It could all be coincidental and I may just be having good days and bad days right now but fingers crossed. It also seems to have had a possible effect on my heart rate and blood pressure as when I took it this morning it was 109/76 and HR was 72. I would be happy with this because my BP fluctuates between the values of 110/78 to 128ish/89ish throughout the day with my HR being anything between 82 and 110 from morning to last thing at night so if it lowers all that it will be a bonus. I’ll keep you informed on how the Pizotifen goes. If a migraine medication can control this I would consider myself very lucky.

Lowering blood pressure may be the mechanism by which many things help us… I realized coq10 at 400mg has this same effect! I took my blood pressure yesterday on it and it was much lower… I just don’t want to go too low. I also came across an article that high dose B2 lowers blood pressure so I wonder if this is simply why they make me feel better?! Less pressure on her head nerves - that would be why high tyramine foods and low barometric pressure affect MAV sufferers because they generate head pressure (tyramine expands blood vessels) . I think getting to an even lower weight may further help by reducing blood pressure . St. John’s wort also acts as an SSRI so that changes the way the brain receives pain signaling … Pitozfen might also have a similar action in another type of way - since it’s a serotonin antagonist (SJW inhibits reuptake of serotonin, which seems beneficial for MAV and migraine generally). Calcium channel blockers such as gabapentin (which also is an anti-epileptic) also change the way the nerves receive pain signaling but for a different reason. A neurologist informed me that magnesium at high doses blocks pain receptors ( by interfering with calcium uptake by nerve cells) so that’s why it’s useful for any migraine including Mav. I’m so glad you’re feeling better!!! A relief to feel somewhat more normal isn’t it? Liv