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 coupe 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