Not inner ear weakness

Hi Guys

A quick update about the MRI and Balance tests I recently had done. I won't be seeing my consultant until mid January to discuss the results. I gather that my MRI results are normal considering it will have been 2.5 months since I had it done by the time I see my consultant. If there was any concern I'm sure they would have wanted to see me much sooner.

I still have not had a fistula test but I did have a posturography test (never had it before) and another test that examines the functioning of all 3 semi circular canals in the ear. I can't remember the name but it involved glasses with a laser on them, a target on the wall that you fix your gaze upon and quick repeated head turns by the doctor whilst you do your best to maintain eye contact with the target. my results for this strongly suggested I have no inner ear weakness ( years ago a caloric test suggested no inner ear weakness either).

I supposedly performed very well on the posturography test. Great for my weight and height and compared to healthy individuals. Very strange since I certainly didn't feel like I did great. The moment you stand in the posturography machine it becomes disorientating. There are 6 tests overall. They involve the walls of the machine around you moving and the floor beneath you moving, eyes shut and eyes closed etc. I passed 5 tests with flying colours but failed one a number of times. From this it was determined that I rely heavily on my vision to balance.

So the conclusion is still vestibular migraine or something else going on but whatever I have it's NOT a result of inner ear damage/weakness. The doctor wants to send me to see a neurologist (migraine expert).

If you have been reading my blog you will know that I doubt the migraine diagnoses that I was first given several years ago. I still cannot believe that I can have a migraine for 11.5 years non stop with not a second break. Surely if it was migraine then the various medications I have taken coupled with the daily exercise, copious amounts of water I consume, migraine diet and time passed would have given me 5 minutes of normality at some time or other but I have not had 1 second feeling normal.

Still there are lots of migraine medications available that I have yet to try so it looks like that is what I will be doing.

Keep strong guys and keep searching for answers

Swimmyhead

MRI and new tests

Hey Guys

Just a quick post to say that I have just had my second MRI scan. I won't know the results until I see my consultant in a few weeks. Obviously I am praying that everything will look completely normal just like the results of my first MRI back in 2009. I did experience a slight spinning sensation during the first 60 seconds or so as I was put into the machine. There was a moment when I thought I would have to hit the alarm thinking I would not be able to lay flat on my back for the 20 minute duration. I found something to focus my jumping gaze on above me though and thankfully the unnerving spins subsided and I got through it ok. Apart from the first minute the most uncomfortable part was actually sitting up after the scans. You guys who are dizzy will know what I mean. Anyway that is that over with.

Next I am to complete 2-3 new balance examinations/tests that I have never had before which is exciting. One is the posturography test, a fistula test and one that I don't recall the name of but it examines the functioning of all three semi circular canals in the ear. I did have a caloric test years ago but have learned that it only examines one of the semi circular canals. The new test is supposedly better and more accurate as it examines all 3. I guess I will find out if I have any inner ear weakness. I'm due to have those tests in two weeks time. I will be back to let you know how it goes.

Unilateral Vestibular Hypofunction

Hi Guys

It's been 9 years since I have had any kind of vestibular testing performed or offered to me but that is all going to change soon. I very recently saw an ENT specialist who thinks that I don't fit the vestibular migraine diagnoses that I have been told I'm suffering from for so long but instead likely have unilateral vestibular hypofunction (basically one ear weaker than the other due to damage of unknown cause). He can't say this with absolute certainty until I have further tests, So I'm to have an MRI (will be my second MRI) and another round of intensive vestibular testing. I don't know what specific vestibular testing I am going to be having but hopefully some different tests than what I had back in 2009. After my upcoming MRI and tests I am to be referred to a neuro ophthalmologist for further examination of my current eye movement abnormalities that have plagued me ever since this vestibular disorder began. Finally things appear to be moving forward which can only be a good thing.

In all these years I have had different diagnoses and have never known what to believe. I was told it was originally BPPV then uncompensated labyrinthitis then Vestibular migraine and now it's possible unilateral hypofunction of the left ear. My GP however thinks I might have PPPD. It's all guess work at this point but maybe these future tests will reveal something more certain, more accurate and which hopefully can be treated or significantly improved at least.

Onwards and upwards

Swimmyhead

PPPD (Persistent-postural- perceptual dizziness)

Hi guys

I am back up to 50mg of nortriptyline for my suspected vestibular migraine but it's still hard to say if I feel any different.  I guess there is some improvement for some of the time whilst on the medication but that is all I can say. It's certainly no fix.The intention was to go much higher in dosage but my doctor suddenly no longer thinks it would be beneficial.

He is beginning to doubt my vestibular migraine diagnoses as he feels at 50mg I should really be seeing significant improvement. That coupled with the fact that he recently read an article about a vestibular condition called PPPD (Persistent-postural- perceptual dizziness). He read it and immediately thought about my situation. I must admit I strongly relate to the symptoms. It also appears that vestibular migraine can coexist along side PPPD. It's all very confusing and as frustrating as ever. I honestly have no clue what's wrong with me. I never really have.

The good news is that PPPD can be effectively treated using SSRI's and SNRI's. The bad news is that there seems to be a decent chance of unwanted side effects. However this is probably the route I am going to go down sometime in the near future. I don't want to write off and completely abandon my migraine diagnoses as there are still many anti migraine preventatives I have yet to try but maybe PPPD is worth investigating.

I think more vestibular testing is in order since I haven't had any sort of medical tests/investigations in about 9 years now. I have read about one stop balance clinics over here in the UK that until recently I never knew existed. They do all the necessary vestibular testing in one visit and give a diagnoses the same day. Some of the test I have not had or been offered in 11 years of suffering. So this is my plan and from such a visit I will get a more up to date/accurate diagnoses and we go from there. Maybe PPPD will be my new diagnoses. Perhaps it will still be vestibular migraine or something else, who knows. It's about time I had a solid answer of what it is I am suffering from.

Below is a link about PPPD for anybody who is interested:

https://pn.bmj.com/content/18/1/5

Swimmyhead

Started Medication Again

Hi Guys

A quick update:

After more than several months off of medication I have recently started to take nortriptyline again. For a few weeks after stopping all medication I felt OK. I truly felt no different on the medication or off the medication but after 5 weeks or so medication free my symptoms intensified. I put it down to the fact that my symptoms always intensify every so often. It's a frequent occurrence but the intensity did not diminish. I found that when I was on medication I may experience the occasional moment of clarity and some steadiness randomly mixed in with the constant bad days, weeks, months. I would wait for these very brief less intense moments. HoweverI realised that medication free I was not getting any of those steadier moments. Not one.

The last several months have been pretty full on symptom wise. Constant daily head pressure, fuzzy vision, constant mild background headaches. With all of this my balance and dizziness have been worse overall. Very sensitive to motion etc.

Realising this I thought it best to start medication again and see how it goes. The plan is to increase the nortriptyline to max dosage over time which I have never done. If this fails my doctor is willing to try a number of other anti migraine medications. I guess if I begin seeing those little clearer moments again then maybe there is some truth in my current vestibular migraine diagnoses. As you know I have huge doubts about my problem being migraine related since nothing I have tried has helped relieve me of my constant vertigo and dizziness. It'll be 11 years of constant daily vertigo and balance problems this May. I can't quite believe it.

There are a number of things I am considering right now. In the 11 years I have suffered with this vestibular condition I have simply not been offered the necessary lab tests. Lab tests that are vital for a vestibular patient to get a solid diagnoses. Lab tests that only neuro otologists carry out.

Swimmyhead

A Day In The Life Of A Vestibular Patient

If anyone is interested:

Swimmyhead

Question: Does altitude affect your vestibular symptoms

Hi guys

Over the years I have read about how air pressure and the weather etc can exacerbate dizziness and vertigo symptoms. There appears to be plenty of evidence to suggest that changes in pressure can have a detrimental affect on people suffering from a vestibular disorder such as Menieres. I know that I can feel worse depending on what the weather is like outside.

What about altitude? I'm wondering if any of you guys out there that have a vestibular problem experience a change in symptoms (good or bad) when comparing higher/lower altitudes? I'm guessing some of you guys still travel despite your vestibular disorder and have perhaps noticed a difference in how you feel from one place to the next. Maybe you live in a place 5000ft above sea level and feel awful most of the time but then have taken a trip to a place say 50ft above sea level and felt much better.

How does a change in altitude affect your dizziness and vertigo?

Have any of you experienced a noticeable improvement in your vestibular symptoms and general well being at lower elevations in particular?

Feel free to leave a comment below

Thanks guys

Swimmyhead

Ophthalmology- No luck

Hi Guys

A quick update regarding my latest ophthalmologist visit. This second visit to the ophthalmology department was a long time coming. 2 years had actually past since my first visit. Anyway I was sent back to get my eyes further examined to see if they could be the cause of my unrelenting balance and vertigo problems. I never got a clear explanation the first time around so was hoping for further testing and answers and possibly some solutions thrown my way. Unfortunately I came away none the wiser. Instead of anything new being done I was given exactly the same eye tests as last time and was told they didn't think it was my eyes causing the balance problem but an underlying vestibular disorder causing the eye movement issues I have. No solutions were put forward except for one which I will get to in a moment which I found ridiculous.

The eye examination revealed the same four eye movement issues that were evident last time. No changes except a possible slight weakness of my left eye muscle. I was told they didn't know why the weakness.My left eye was double/blurred on the day but I have to say I past the actual vision tests and depth perception tests with flying colours. All are excellent which is weird considering my depth perception seems way off and my left eye vision is blurred frequently. The blurring/doubling comes and goes frequently.

After having seen the woman who carried out the eye examination I was then told to make my way down the corridor to see the main specialist. He told me that my vision is fine and that thy are not causing the dizziness and that I should go and see a neurologist. I asked if I could be referred to a neuro ophthalmologist since they are the brain and eye specialists and have various treatments available. His reply was that there was no point since my vision is great and he thinks that they would not be able to anything for me. I can't say I am too happy about that. I suppose I am going to have to pay privately in the future to see a neuro ophthalmologist because I still convinced my eyes are playing a significant role in all of this.

He asked if I balance better when covering one eye. I said that maybe it helps a tiny bit but I really can't be sure because there certainly isn't a significant change. He then told me to buy an eye patch and see if it helps. I was then told that if it helps then I should wear it. I asked how long for and he said "forever".

So after 10+ years of constant dizziness and vertigo that is the best advice I was offered. To wear a F****** eye patch for the rest of my days. This is the year 2018 and that is a treatment solution. The thing is wearing an eye patch doesn't help at all and only makes my perception of an already wobbly/whirling world even more off. My depth perception test results may have come back good but try covering one eye and see how one's depth perception appears. Couple that with my head symptoms and visual problems and it just makes matters worse. I'm actually really pissed off about the whole thing. I really expected something different this time but instead repeated the same old tests with absolutely no further investigation or help offered.

The appointment was a huge let down and actually turned out to be one of the worst experiences I have had vertigo wise. I felt awful going to the hospital that day and was so off balance and wobbly making my way through the car park and into the hospital. Trying to navigate through the winding corridors in the dull artificial light and patterned walls and floors was disorientating. I can honestly say even after all these years and numerous hospital visits my head and balance was intensely unnerving.

The worst moment came after having those eye tests which took about 45 min. I was told to make my way out of the office and turn right down the corridor to the next waiting room. The eye tests took their toll on me because as I left the room to turn right my whole world was a disorientating hell even more so than coming in. It's probably the dizziest and out of sorts I have ever been. Most definitely a top five moment. I had real problems just turning my head or simply moving my eyes. The swaying and bouncing and unsteadiness really felt too much. I had all these people waiting in the corridor and people walking by me and I honestly didn't know how I was going to put one foot in front of the other to get to the next waiting room. I was so overcome with disorientation/vertigo and dizziness.  I think it is probably the first time that I have ever felt totally vulnerable. There was a moment when I truly thought I would have to lean back on the wall behind me and slide down to a seated position. If I could have ran a way at that moment I would have but there so many people around me that I just knew I had no chance of moving with any finesse through them plus I had another appointment to attend. It was scary. Anyway I stood outside the waiting room for 30 min feeling totally out of it as I could not bring myself to walk into the seated area for fear of falling over.I was going through all of this whilst trying to look completely normal and composed as I didn't want any attention drawn to myself. I don't know why my symptoms became so bad that day. The truth is however is that I am not doing too good symptom wise as of late anyway.

What is so devastating about the whole day is that I could still feel that bad even after all of this time. That my head and body could fail me like that after 10 years. To feel that way and then be told a garbage non solution like wearing an eye patch is overwhelmingly disheartening. Don't they think that if covering one eye was the fix that I probably would have realized that myself years and years ago.

So there you have it. Yet another unsuccessful visit. Still non the wiser and stuck in this dizzy limbo. I feel so let down by the whole medical system. I just feel like I have never really been helped. I won't give up though. Next I will be asking my GP for a referral to a neurologist (since the ophthalmologist suggested it). I have never seen a neurologist before. I's odd isn't it. 10 years of a chronic head problem and I have never been offered a neurologist. Also I can see a neuro ophthalmologist visit is in my future. Not sure how much that will cost.

I will leave it there guys. Until next time

Swimmyhead