Back again

Hey Guys

Wow, nearly 2 years since my last post. I didn't think it had been that long. In my last post I talked about gearing up to try the medication Effexor for my chronic dizziness. I had high hopes as I had read some positive stuff over the years about the drug and how some vestibular patients (Vestibular migraine patients) had improved a great deal taking it. 

Unfortunately, it did nothing for me. I can't remember exactly how long I was taking the medication (probably about 7 months back in 2021) but it was rough. The only thing I felt was extreme fatigue. I mean I was on my hands and knees some evenings (no joke). Eyes rolling in the back of my head every day and night. Struggled to just sit and strum the guitar which I love to do. The tiredness was overwhelming. I experienced no benefits whatsoever. 

For several months I stuck with it hoping the tiredness would ease and that a positive change would occur but in the end I had to come off of the medication. I have experienced mild side effects from medications before such as dry mouth and drowsiness in the mornings but those kind of side effects I could manage but I could not tolerate the fatigue I was experiencing form the effexor. I recall yawning within the first 30 min of taking the first pill. It never stopped afterwards. 

I think I quit the effexor late 2021 and have been medication free since then. I am still dizzy and deal with visual vertigo daily, but I don't feel any different dizzy wise medicated or not. If that is the case, then why bother taking more drugs. Right now, I am happy to be free of medications. That said, I will not rule out trying other medications in the future, as there are options I have yet to try and that could work for me. but I just want to rest for now. 

This is just my experience with Effexor and it doesn't mean that Effexor will not work for you and your vertigo/dizziness. It has helped others. It was just unfortunate that I could not tolerate it. 

Swimmyhead

Effexor - Venlafaxine

 Hey Guys

What a crazy year 2020 has been. I will be glad to see the back of it as I'm sure you will. Nothing has really changed vestibular symptoms wise. I'm still dealing with it all on a daily basis. Since Covid appeared I have had no doctor appointments except a skype chat with a new neurologist recently. He thinks it's time I come off of my 50mg daily dose of nortriptyline ( I have been taking it daily for 8 years now) and wants me to try a different medication for my dizziness called Effexor (also called Venlafaxine here in the UK). 

I have known about this medication for probably 10 years now but have never had the chance to try it. Some of you have kindly messaged me over the years telling me to try this particular medication. I have mentioned Effexor many times to doctors in the past but for whatever reason I never was prescribed it. 

Anyway, I have been tapering down my dosage of nortriptyline these last 4 weeks and will take my last tablet tomorrow.  I think I will then give my body a rest from medication for a week or two then call my GP to start the Effexor. It is supposed to be successful for some in treating vestibular migraine and PPPD. I have had both of those diagnoses over the years so we shall see. 

I'm excited to try it and pray it helps me finally get some relief. At this point (13 years in) I reluctantly accept I probably will never feel 100% and that is fine but if this medication could just lessen the symptoms noticeably and is consistent in doing so that would be amazing. I will except that since no medication I have ever tried has really helped much at all/if at all.

I am slightly concerned about possible new side effects but that is the chance you take I guess. Right now I have been feeling nauseous for the past three days which isn't nice. I think it could be a result of tapering my Nortriptyline. It seems Nausea is a common side effect of withdrawal from this drug. 

I have also been prescribed a small amount of Cinnarizine which is another medication I never tried before.

So there you have it guys. I'm keeping my fingers crossed Effexor will help me. If that does not maybe the Cinnarizine will. 

Take care

Swimmyhead

Update 2020

Hi Guys

It's been a while since I last posted. A quick update about what is going on with me and my vertigo/dizziness. I had a couple of appointments last year to see a neuro ophthalmologist. The reason? to find out if my now abnormal eye movements (nystagmus etc) are the reason for my ongoing chronic dizziness and vertigo or is it an underlying vestibular disorder that is causing my strange eye movements. 

The conclusion? My neuro ophthalmologist thinks it's an underlying vestibular disorder causing the nystagmus and not an eye movement problem causing my symptoms. I have often thought that whatever happened that morning in 2007 when I woke up spinning did something to my eyes. They have always felt off everyday since. I figured after all this time maybe the vestibular problem had cleared and I was perhaps left with an ocular motility issue which is now causing my dizziness tec. Well, apparently not. 

The ophthalmologist thinks I had an inner problem all those years back which has left me this way. I don't doubt him. I mean something went terribly wrong that is for sure. To this day I don't know really what happened though as I have heard inner ear and migraine and this and that over the years. 

So there you have it. No more eye doctor visits for me.

Oh, and I turned 40 this past New years day. I can't believe it, ha. Bloody 40.

Second trip - A Success

Hi Guys

The last time I posted I talked about my trip to Jersey. Well, in August I travelled a bit further and went on a short trip to Spain. I was a bit anxious about flying there as the flight was around 2hr 30 min but I did so well on my previous flights that I just had to do it. Thankfully the whole experience was great. Spain was beautiful. Hot sunny weather and the flights there and back were smooth except for the take off when heading to Spain. Wow, there was severe weather warnings in place that day. Very windy. We flew down the run way and lifted off the ground and the plane drifted left then up and down and wobbled around ( a few people were gasping). Once above the clouds the flight became smooth and steady. I am glad to say that even with my motion intolerance any turbulence that I have experienced so far has not effected me in the slightest. I mean yes it feels peculiar in my head more so than normal folk (how could it not) but I don't feel any motion sickness at all. Thank god. Once the turbulence stops I feel the same as always. I am also happy to say that once off the plane I don't feel any different. I'm not any more dizzier or motion intolerant because of the flight.

I had a great trip and managed pretty well. I probably felt better during those five days in Spain than I have ever felt in the last 12 years (weird). The only real crappy moments were whilst navigating the tiny shops and walking the aisles. The familiar lifting up, dropping of the floor sensation would appear along with the visual vertigo also getting up out of my seat and walking between tables to exit a restaurant would feel a little uneasy but apart from that my vestibular symptoms never became overwhelming.

Since being back home I have felt worse. Back to my usual level of dizziness with some days being very uncomfortable. I swear to god that a bright sunny day helps my symptoms. I always feel more balanced the more sunshine there is.

Anyway there you have it another successful trip. I feel very proud of myself attempting these busy trips whilst dealing with the daily vestibular problems.

I also had my neuro ophthalmologist appointment during the summer. To make a long story short they looked at my eye movements and confirmed my eyes now tremble in every direction. The docs feel it's my underlying vestibular disorder causing my eyes to act this way but they were willing to put me on some medication and eye drops that in a small percentage of people have been found to help calm eye trembling/nystagmus. They think like I do that if we can calm my eye movements then perhaps it will help the overall dizziness.

Unfortunately I had to stop using the eye drops as they dried my eyes out and I woke up in pain since I also have a corneal erosion (So painful). Also within about an hour of using the drops I began to wheeze and become short of breathe for an hour or so. Shame.

Swimmyhead

More flying Time

Hi Guys

Just a quick update to say that I have been flying again. My previous post was about my experience flying with easy jet via there fearless flyer course. If you have read that you'll know that I went on that course in order to get on a plane for a short while to see how flying would impact my vestibular problem. It was a strange experience. Especially take off but it was worth it.

It was worth it because I didn't let the disconcerting sensations I experienced whilst flying that day put me off flying in the future. Instead I booked a trip and jumped on a plane again. I admit I was a little anxious about that day arriving mainly because of the busy day ahead one would expect when travelling. I'm never sure how my symptoms will be on any given day. They are always up and down. I just hoped that come the day of the trip I wouldn't feel too bad. Fortunately I was ok. Symptoms were manageable. I navigated the busy airport and all it's reflective floors and lights pretty well. Eventually however the crowds and lighting started to get to me and my symptoms increased but I only had to wait a little over 2 hours to get on the plane.

I sat down in my seat and was a little anxious about speeding down the run way and take off. I also felt uneasy due to the rocking of the plane as people were boarding and finding their seats. The movement of feet up and down the cabin made me feel like I was on a boat. It settled quickly though once everyone had sat down. I was glad to have a window seat. This helped last time and it helped this time. To be able to look out into the distance works wonders for me. I can fix my gaze on the wing beside me or something in the distance and it really helps to steady my wonky head.

So we started speeding down the runway and to my surprise the speed and the bumpiness didn't phase me at all this time. It felt fine. We then lifted into the air and that is when my brain or inner ear or whatever goes in a state of shock, ha. It was a very strong sensation of floating and head pressure and bewilderment. There is no spinning or anything like that it's just uncomfortable. It's like I feel lost in space, in a bubble. I really don't know how to describe it. It's not pleasant but thankfully once the plane becomes steady. It all feels ok. I know that the window seat is a must during take off. It allows me to see what's happening rather than just feel the odd sensations. The plane would tilt here and there and I was very aware of this and each time I would gaze out of the window to ease the strange head sensation that accompanied each tilt of the plane. Occasionally the plane will hit a few slight bumps. These produce odd head sensations but nothing alarming. I felt the descent more this time around but it was fine. Then we arrived at our destination. I'm glad to say I felt no different getting off the plane compared to getting on the plane. There was no lasting effects whatsoever.

The trip was good. I walked through the busy town and walked hours up and down the beach each day. Surprisingly I got sunburnt and looked like a lobster, ha. I felt proud of myself for travelling and being active. It's been a lifetime since I took on a task like this. It was great to be out in the world. Never free of my vestibular symptoms of course but I was alright. Taking a trip is not something I could have done during the first 8-9 years but I have proved to myself that I can do it now. It's not easy but it's doable.

Anyway, the flight back was surprisingly great overall. I still experienced that disorientation when the plane left the ground but it wasn't as overwhelming as my previous two flights and it was over much more quickly. I spent the entirety of the flight home enjoying the experience. The odd sensations when the plane tilted and the bumps were still there but I expected them and they didn't feel so uneasy. Overall the flight home was steady and smooth but as we were coming into land we hit some pretty harsh turbulence. The plane was bumping and rocking side to side. Some people behind me sounded pretty scared but even through that I was relaxed and dare I say enjoyed it. The turbulence  didn't make me any dizzier, it didn't make me nauseous. I actually found it exhilarating. I owe that to Easy Jets fearless flying course that I did back in March. The pilots that day talk about the common misconceptions people have about flying. Turbulence is a major topic. What I learned about turbulence that day enabled me to completely relax throughout it. We landed safely.

The whole trip experience was amazing. So much so that I have another trip (flights) booked over the summer but this time to a further destination meaning a longer flight time. I want to see how longer flights will impact my vestibular disorder. I'm hoping they won't have any impact of course. So wish me luck.

Keep pushing forwards

Swimmyhead

Flying with a vestibular disorder - I did it

Hey Guys

I thought I would drop in and give you a few updates about what's been going on with me. I didn't realise I had not posted anything for so long.

So the last thing I told you was that I was having some new vestibular testing done and another MRI. Thankfully all tests came back normal. Great in that there is nothing seriously wrong but not so great in that I am no wiser about what could be wrong.

Anyway I was referred to a hospital in Liverpool to further have my eyes examined since it has been found in the past that I have a few abnormalities regarding my eye movement. I won't go into them here as I have blogged about the abnormal eye movements in previous posts.

So I saw a specialist at Liverpool for a quick examination about a month ago now. It was not an in depth examination just a basic initial assessment and a get to know me and my situation type thing. At this appointment horizontal end point nystagmus was observed as well as mild exophoria. Like I said this was a very basic examination compared to what I have had done in the past. Those past examinations found 3 other ocular motility issues along with nystagmus and mild exophoria. The great news is that I have now been referred to see a neuro ophthalmologist to further examine my eyes and see if they could be causing or at least contributing to the nearly 12 years of constant dizziness and vertigo. As you can imagine I am hoping he can tell me that my eyes are causing /contributing to my daily symptoms and that they can offer some help to me, be it prism lenses, medication, visual therapy. I'm open to anything. Anyway I am waiting for an appointment date and will let you guys know how it all goes. It's taken a long time to get here.

Apart from hospital visits these past few months I actually did something in March that I still cannot believe I did. I took a commercial flight with easy Jet. I have not flown in 20 years. Partly because of some anxiety about flying but mainly because of not knowing how flying would effect my balance and dizziness symptoms. Well, last month I thought to hell with it as there is only one way to find out and that is to jump on a plane.

I found out about a course run by Easy Jet airlines which they call the Easy Jet Fearless Flyer course. It is for people who are scared of flying. I won't go into the details but you attend a 3 hour lecture/presentation made up of easy jet pilots and motivational speakers designed to put peoples mind's at ease and squash the common misconception people have about flying. Once the day's presentation is over participants then find themselves walking through an airport and sitting on an easy jet flight about to take off, ha. The flight lasted about 40 minutes.

The course was perfect for me as I had some anxiety about flying but primarily I could use it to see how my vertigo/dizziness would react being on a plane. I figured the flight is only an hour max and we land back were we started. I thought even if I react badly (dizzy/nausea etc) it would be over soon enough.

So I did it. The day was very long but fun. The Easy Jet team were fabulous and were right along side you each step of the way. Thankfully I had a decent day dizzy wise. I had nerves leading up to the day obviously given my daily symptoms. I thought am I mad attempting this. I just kept hoping I wouldn't be too symptomatic come the day and fortunately I was not.

I felt confident about the flight whilst waiting to get on and thought it would be fine. I felt that way and kept telling myself that over and over. I was actually looking forward to take off.

That is when the engines starting roaring. It became very apparent immediately that speeding down a runway with a vestibular issue is like nothing I have felt before. I had a feeling before hand that I needed a window seat and thank god I did, ha. I found it very uneasy to stare at the seat in front of me as it was vibrating as we headed down the runway. I found it uneasy looking down the cabin because of the bouncing of the plane. Instead I looked out of the window and fixed my gaze into the distance or at the engine beside me. This  helped me feel more stable. Then we lifted into the air and began to climb.

Lift off is an unusual feeling for healthy people with no vestibular issue but for me it was especially unusual. My body and head were very sensitive to the fact I was floating /flying through the air. I could feel every single bump, turn, acceleration, deceleration. At this point I was anxious and just waiting for the climb to be over and for the plane to level out. I would be lying if I said the take off was comfortable as it was not. It was disconcerting to say the least and surprised me. I honestly thought I wouldn't feel a thing.

However once the plane levelled out it became much easier to handle. Sure I was dizzy and it all felt odd but I started to relax. Mid flight was ok as was the landing. No increase in symptoms what so ever upon landing. Before I knew it the flight was over. I was proud of myself for doing it but also a little shocked at how uneasy the take off felt but very glad I did it. I now know what to expect.

I have not let the first few minutes of take off put me off flying. I have just booked myself on an actual trip next month This time I will be in the air 1hr 15 min plus I will also have second flight a few days later since I will need to return home, ha. So two flights coming up.

If any of you suffering with a vestibular disorder and are scared to fly because of it I say you can do it. Obviously start with a very short journey and see how you feel. Baby steps. I have spoken with vestibular patients and they all say the take off is the most uncomfortable part but once in the air and level it becomes easier. I now know exactly what they mean. My biggest advice for anyone wanting to fly with a vestibular disorder is to make sure you book a window seat just so you can look out into the distance. It really helps. Also there are lots of other things you could try such as travel sickness wrist bands, travel sickness pills, ear plugs, anxiety techniques to help calm yourself. I will say that despite the exaggerated movement and feelings whilst on the plane I did not feel nauseous or sick at all. In that regards I was absolutely fine thankfully.

Also for anyone in the Uk who is scared to fly or have never flown before then I'm telling you the Easy Jet Fearless flyers course is amazing. I talked to people that day who had never even flown before because of how terrified they were of planes. Those very same people got on the plane after the Easy Jet presentation that day and walked off of it with smiles on their faces saying how much they enjoyed it. Incredible really.

Here is the actual proof of me flying the UK skies, ha.

Take care

Swimmyhead

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

Patrick Stewart

Hi Guys

Actor Patrick Stewart has been suffering constant dizziness and vertigo for the past 8 months -

http://www.telegraph.co.uk/films/2017/11/16/patrick-stewart-reveals-treated-vertigo/?WT.mc_id=tmg_share_tw

Swimmyhead

Ugh

Hi Guys

In my last post I talked about feeling pretty decent overall for a constant month but unsurprisingly about 3 days later I was back feeling like absolute S*** and have been all day every day ever since. I won't rattle on about all of the symptoms and sensations I am experiencing as I am sure if your reading my blog you know exactly what I mean. It's all so devastating really isn't it. It's getting to the festive period now when everybody gathers, goes out and has fun with family and friends and I just know I'm barely going to leave the house. I do like to go for a walk during this time of year in the evening when I feel I can tolerate the uncomfortable sensations to see the Christmas lights people decorate the front of their houses with. It makes me feel festive. I can't believe it's going to be my 11th Christmas feeling this way. Anyway what can you do it's the hand I am dealt isn't it. I do hope to venture out Christmas eve with friends for a couple of hours but as usual I will have to wait until that very day to see how everything goes.

One last thing, I get to see an eye specialist in January to further investigate this dizzy hell. I don't know how I feel about it. Part of me is hopeful they can give me answers and a solution this time yet the other half of me is less optimistic. It's been so long living this way I wonder if I am ever getting out of it. From time to time my optimism about finding a cure and getting better takes a massive hit and I guess it's one of those times right now.

Take care guys

Swimmyhead

4 weeks

Hi Guys

I have had a very unusual 4 weeks. Dare I say the dizziness has been manageable for 4 straight weeks now. No real ups and downs intensity wise which is odd. There appears to be a consistency to the level of dizziness I am currently experiencing. Yes I wake up dizzy and go to bed dizzy but the dizziness remains pretty much at a constant (lesser) level all day long. If you have read my earlier posts or know a little about about my last ten years you will be aware that this simply isn't my usual daily experience. Days normally start off bad then gradually get worse as the evening sets in. Perhaps I will get a couple of days here or there or maybe a few random hours when symptoms lessen but for no real significant time period. Four weeks straight is the longest period in over 10 years. I'm feeling more optimistic of course and hoping that maybe I have finally turned a corner ( I have said this before I know). It's weird because I don't like to mention it since I don't want to jinx myself but I think it's worth mentioning after the hell that I have been through and for any of you guys out there who have been dealing with an insane level of disorientation and dizziness day after day, year after year with no hope in sight. Anyway who knows how it's all going to turn out. I will just have to wait and see.

The only thing that has changed in my life is that I am no longer taking any medication after several years of doing so. Coincidence? I don't know.

Other news I have is that I am finally being referred back to an ophthalmologist once again to get those abnormal eye movements of mine further investigated. I just pray they examine me fully. It's taken absolutely ages to move forward in this particular direction but I should have some news in the coming months.I will let you know if my peepers are causing or contributing to the dizziness I experience and tell you of any possible solutions suggested.

I mentioned in my last post that I was experimenting with magnesium. After 3 months of doing so I can say that I didn't feel any benefits. Doesn't mean any of you guys shouldn't try it though since it works for some.

So there you have it.....keep strong guys

Swimmyhead

Off of all Medication

Hi guys

After several years of taking medication daily for my vertigo and balance problem I am happy to say I have completely stopped all forms of medication (for the time being anyway). Over the years I have been given a few different anti migraine meds in order treat suspected chronic vestibular migraine. The drugs I have tried are Serc, Amitriptyline , Gabapentin, Topamax and Nortriptyline.

I went along with the treatments since I needed help and hoped these drugs would cure me of this condition. If you have read my blog or website you will know that all treatments have been unsuccessful. I never got any relief from any of the medications but still I continued popping the pills hoping it was just a matter of time before there magic would kick in and work.

Perhaps I felt some benefit back in 2012 when I was given a combination of anti migraine medications but nothing to jump for joy about. I still continued to experience some of the most disabling dizziness I have ever had whilst taking these drugs. I often wondered when I was about to swallow my daily pills "why on earth I'm taking them".

After being nervous about stopping I am glad to say I feel absolutely no different, dare I say a little better. Either I have the wrong diagnoses (I think it's likely) or those particular meds are not the ones for me. I have not tried that many in all honesty. Five different drugs in a total of 10 years (not a lot really is it). I'm still open to trying new things but for now I think it's worth giving my body a rest from the chemicals. Since they did no good for me anyway.

I was praying I would not go back to square on once coming off of them and surprisingly I have not. So far anyway. For the last several days I would say I'm somewhat steadier and clearer. Coincidence? I don't know.

I want to say that for the last 4 weeks I have been supplementing with 100% chelated magnesium. 100mg - 150mg a day. The reason for this is because I read about a guy who felt dizzy and had balance issues just like me and after trying different medications with no luck was told to try magnesium. Long story short ....... he did and never looked back. It sounds to good to be true I know but it's worth looking into isn't it. Just a word of warning, if you intend to take magnesium then it's best to mention it to your doctor as too much can cause stomach issues.

Here is a link to his story: http://www.mymagnesiumdeficiency.info/magnesium-dizziness/

He talks about the different types of magnesium and the brands that work best for him. I have started taking the very same product called Doctors best 100% chelated magnesium.

Here is a link to that product: Doctors-Best-Absorption-Chelated-Magnesium

So I am going to continue taking the magnesium tablets but for now give my body a rest from the prescribed medications.

In a couple of weeks I am going back to see my doctor and will be looking for answers not related to vestibular migraine.

keep battling on guys

Swimmyhead

No Breakthrough yet

Hi guys

I hadn't realised it had been so long since I let you know how things were going with the topiramate that I have been taking for my dizziness and vertigo. It's been a little over 4 months now that I have been taking it slowly increasing the dosage to 125mg daily and can honestly say I have not really had any breakthrough yet. I will say that for the last three days I am having a steadier, clearer time of things but if you have read my blog and know a little of my experience and my vertigo hell you will know from time to time I get these random moments or days were my symptoms become less intense before they kick off again. So I am not currently thinking it's the topiramate that has caused this steadier time as for last 4 months I have been pretty much the same heavy headed, unbalanced swimmyhead I always am.

I was doing very well as far as having no side effects from the topiramate that was until I hit 125 mg. About a week in I noticed my sense of taste and smell completely vanished and has not come back. I have already lost my sense of balance I don't fancy losing another two senses. I have a trip to the doctors anyway next week so that will be discussed. Maybe it's time to try something else. In fact I personally feel it's time to head down a completely different route, away from the vestibular migraine diagnoses. There are many reasons as to why I am feeling this way. I will leave that for another post. There is lots I need to talk about with him. It's 10 years this month that this all happened to me. I don't want to do another 10.

Take care guys

Swimmyhead

50mg Topiramate (Topamax)

Hi Guys

Just a quick update regarding my new medication. I have doubled my dose of topiramate and am now taking 50mg daily. I have to say that I have experienced a worsening of symptoms since doing so but this I am told is to be expected and hopefully will not last much longer. Apart from the unwanted increase in my usual dizziness and balance related symptoms I am glad to report of no other new side effects appearing. I am still optimistic after reading many positive stories about this treatment and it's effectiveness in treating chronic vestibular migraine so am willing to put up with the increased symptoms. I will be visiting my doctor next week to update him and imagine I will be continuing this treatment for the foreseeable future.

Swimmyhead