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