So, this is my first blog post. I have been toying with the idea for a while, simply because I am too lazy to write a diary and don’t fancy writers cramp. I guess the first thing I should do is say, I have no idea what I’m doing, and to apologise as I’m not a natural writer. Like my mouth I have have a habit of spewing out what’s on my mind and then regretting it later. So bare with me, oh and excuse the spelling and punctuation, not my strong point either.
Secondly, I should explain why I am writing this. I’m on a journey, a journey to good health hopefully. It’s one I have been on for 14 years and sometimes it is all tumbling around in my head so I thought if I write it down it may quiet my head. That may not be the case but I thought I would give it a try.
I guess I should explain what is wrong with me, to shed light on why my health is a problem. And before I start, yes I know it could be worse, yes I know in some ways I am lucky, yes I look fine and you wouldn’t know I am suffering inside and finally yes, I know to some it may not seem a big deal. So I write this blog for me, to put it in perspective, to quiet my head, to be able to look back and say “see, I am better than I was two weeks ago” and if along the way someone else reads it and thinks ” wow I know how that feels” and “I’m glad I’m not alone” then that’s good too.
And before I get into my story I should add, what has happened to me will not necessarily be your future, that everything I have tried to rid myself of this problem has been overseen by professionals and if you think something I mention may be of benefit to you don’t ever try it without speaking to your specialist first, because unfortunately you can make it worse and I would not want to be responsible for that.
So, I’m going to start with the cliff notes, because it takes a while to explain the last 14 years and I’m not sure there are enough words in this first post to do it justice
I have what I like to term a “prickly vestibular system”, in short I have a problem with balance and dizziness. Now that may not seem like much but imagine being drunk all the time,not drunk as in I’m falling about laughing and having a good time, but drunk as in “should the wall be undulating like that”, and “why is the room moving when I sit down”, and on really bad days “please stop the room spinning because I think I’m going to be sick”.
It all started 14 years ago when my youngest child was six months old. I woke up one day and felt a little dizzy, like you need to grab onto the bed for a second to stop the room from spinning before you get out of bed dizzy. It wasn’t too bad and I though it was just because I had caught a cold. Over the next few days it didn’t get any better so I went to the doctors and they told me I had a virus and ear infection and I likely had labyrinthitus, an inflammation of the inner ear. They gave me some meds and said rest for a week and you will feel better. And I did, the meds helped and the vertigo (spinning) was minimal even though it was unpleasant and when it was over I thought ” wow, hope I never get that again”. And I didn’t, for six months. Then I got a cold and it all came back and I guess a pattern was formed.
Over the next few years I found whenever I got a cold or virus, which I get a lot as I have Crohn’s disease which means I have a compromised immune system, I would start to get dizzy. I learnt how to deal with it, take the meds, rest and it will get better but over time I also noticed after the attack I started to feel unbalanced. Now what does this mean? For some with prickly vestibular systems it means feeling like you are walking on marshmallows, I love that description and I will admit I stole it from someone else but it sums it up really, and if you want to get an idea have a walk across your mattress in bare feet, feel how you sink in and you will know what I’m talking about. Others get the feeling like they are on a boat, and it’s rocking from side to side and this one is usually accompanied by nausea, then others feel like the walls are rippling and it is hard to find your place whilst walking past. My favourite is the pin balling from wall to wall, that one is a bit of a trip and I have been known to giggle when that happens in leu of crying. I have experienced all these symptoms and many more which I’m sure will make an appearance in later blogs.
But back to the 14 year history, after a few years of this, three if memory serves me right I realised I needed to seek help as each time I was being left with more uncomfortable feelings. I was referred to the balance clinic at Charring Cross hospital in London, where I am told they had an amazing service. They ran a barrage of tests on me, most extremely vomit inducing like the spinning chair and diagnosed bilateral vestibular failure. In short the vestibular nerve in both ears was damaged presumably by the constant barrage of viruses that I’d had in my life and the nerve was sending false messages to my brain telling me I wasn’t upright, standing still or anything else that has to do with balance and positioning. It was reassuring to have a name for it and I was told I could benefit from vestibular rehabilitation therapy or VRT for short.
So they sent me along to a practitioner who specialised in VRT and they taught me all sorts of exercises that challenged the brain to read not just the stimulation it was receiving from the nerve but also from the eyes and muscles. Now these exercises are hilarious, they get you to do the nodding dog, and standing on one leg and all sorts of other ridiculous positions. But it worked, by forcing the brain to use all the information I recovered perhaps 90% of my balance, and for a while life was good.
I returned to charring cross every year for five years. They re tested me ever time and told me my nerves were still failing and reassured me that for me that would be a good thing. I had compensated so well for the loss that my brain was barely using the faulty information and once I lost the nerve I would feel much better. So I carried on through that five years, some days were bad but mostly I managed and felt positive for the future. I lived my life with only the odd true vertigo attack, again when my ears were compromised by an ear infection, but the attacks were relatively easy to manage and short.
Then just prior to my 40th birthday I gave up smoking. I did it with good intentions and as I had never done it before I had no idea what it would do to my health. It’s a good thing to stop smoking but for me it was the start of six years of hell. When you give up smoking your body expels the toxins and for me that meant catching every bug that went around. For the first few months I managed although I was constantly bunged up with some virus or another and then a month before my birthday I woke up with vertigo. I thought it was just another ear infection and would just do what I usually did, work my way through it and after ten days the vertigo would go and I would be back to normal. Now I should clarify what I mean by vertigo, it’s not when you look over a cliff and feel wobbly and faint because of the height, to me it means when you move your head the room starts to spin. For me the spinning has only lasted about 30 seconds each time but I have read that others get it for much longer. Let me tell you it’s the pits, really ,your body goes into shock, panics, you feel sick and you just need to hold your head in your hands and pray it all stops moving. So anyway after the ten days the vertigo went, aren’t I lucky? Some aren’t but I felt seriously unbalanced, as if I couldn’t walk in a straight line, as if my upper body wasn’t connected to my lower body, the walls were moving, the floor was moving, my body didn’t feel my own. I had never to that point felt anything so awful and it was continuous and nothing helped. And it didn’t get better, even though I was doing my VRT four times a day by then. I had gone from 90% feeling ok to about 20% feeling ok. It impacted my life in so many ways. I couldn’t drive, even though I have never to this day been affected by the balance or vertigo when driving (apparently it is something to do with sitting still but having movement around you) so I had to have family come and drive my daughter to school. I couldn’t eat because I felt nauseous all time, I wouldn’t watch tv, use a computer, read or do anything that would have relaxed me. I felt panicked all the time because everything was just moving. I stopped going out because it’s hard to walk down the street when you can’t walk in a straight line and doing things for my family became almost impossible.
After a few months of trying to deal with it on my own and frankly being miserable ( you should have seen me that Christmas, so not fun) I decided I needed to seek help. Although Charring Cross had been great to me I had always felt they used me as a bit of a science experiment. I had agreed to participate in trials over the years, which I didn’t regret as it gave them more understanding of the condition and ultimately I had to hope that may have helped other people but this time I wanted someone who was there to help me, so I asked for a referral to a local balance clinic. They saw me and did all the usual tests and gave me shocking news, apparently, rarely the virus had actually switched my vestibular nerves back on. I had gone from barely 5% use and expecting them to fail to full use. They explained the reason I was feeling so crappy was because my brain was so well compensated to the loss through my hard work and VRT over the last five years that it was now refusing to read the new information, the correct information given by the nerves. So basically in trying to fix myself I had now trained myself not use my perfectly working vestibular system. It was a shock I can tell you, to them and me. Apparently it just doesn’t happen so there answer was a whole new set of VRT to reverse the effects, for me to push myself to do all those things that made me uncomfortable, like driving and going out. They said eventually my brain would get it again and it would take time and that one day I would just wake up and it would be gone, even if it was ten years down the line.
So essentially that’s what I did for another five years. I pushed myself, refused to give up, learnt what I could and couldn’t do. I learnt my limitations without succumbing to the panic that this would never get better, I pushed and pushed and it was hard but I finally got most of my life back. I still had bad days and virus days followed by the inevitable vertigo but they were few and far between. I did start smoking again, for stress relief, something I regret now but thought was helpful at the time and that was where I was till a year ago.
June 2015, the beginning of a bad year. I had been feeling a bit poorly, I knew the warning signs. I knew I had to be careful turning over in bed as it was possible vertigo was on the horizon. For those that have vertigo you can learn the warning signs, the heavy head, slight rotation of the eyes and if you are careful and it is not compromised by problems with your ears you can sometimes stop an attack before it comes. I made a mistake, I went to the dentist, I should have known better and looking back I realise I knew it was a bad idea as I asked my mum to drive me. It was a good job I did because when I got up from the dentist chair the room began to spin, it was the first time I had ever had an attack that wasn’t triggered in my own bed and it terrified me. The poor dentist was talking to me and I was valiantly trying not to throw up on his floor. My mum drove me home and I instantly reached for the stemetil, my go to drug when I have vertigo and as usual I got through the attack after about a week.
But, it knocked my confidence. I’m not usually an anxious person, I’m a go getter, if there is a problem I fix it but this knocked me for six. I stopped driving because even though I knew I only got vertigo lying down and you don’t tend to drive lying down, there was the but what if element. I started refusing to go out with my family, scared I would have an attack while out and the more anxious I became the more unbalanced I got. That happens with stress and anxiety, if your brain is focuses on that then it is not focuses on keeping you upright so I was in a catch 22 situation I knew I was making myself worse but was too afraid to change it.
Then things happened in my life, I won’t go into them as this is about my health journey not my family situation but all I will say it was a stressful year and even if I had been well I would have found it tough to deal with. So I was stuck and had not seen a specialist for about five years and initially was reluctant to do so again as I didn’t want to go through all the tests as it would bring on the vertigo again. I was scared. But my husband convinced me I needed help and support, that doing the VRT but refusing to do normal things wasn’t fixing the problem so I asked for another referral. This time to another hospital that I had heard were doing good things with balance issues.
I was seen and tested and found to have unmoving ear drums, thought to be caused by congestion. My vestibular was still functioning but I was still in decompemsation ie my brain was still not getting it and it was suggested I should have my VRT reassessed. This was done and I was given different exercises and told to basically go get a life, and I was, I really was I bought a new car as my old one had sat rusting for almost a year and I actually started driving again, I started going out, pushing myself and even though I was now suffering from crippling anxiety I started to push past it, began to be the old me again, I was getting there.
Then two months ago I got hit by a virus, the worse one to date. I had a severe infection in both ears and landed up with three courses of antibiotics to shift it. I was ill and weak and as I’m sure you guessed the vertigo came back. But this time I was under a specialist and they tested me, told me I had BPPV, basically the crystals on your ears get stuck in the canal causing vertigo. Knowing my history of short term vertigo I now wonder if my yearly bout following a virus has been BPPV all along, but the good news is they can fix it. They do a manoeuvre called the epley, they basically roll you around to free up the crystals in the ears. I have had it done on both sides (because I couldn’t have it in just one) and they tell me for now the vertigo has gone. It appears to have but I will admit I have been to afraid to turn over in bed to find out and let’s face it who needs to roll over inbed, when you can gently turn,I’m sure I can get through my life without doing that.
The down side to all this is I have lost all the progress I made, I am back to square one. I feel unbalanced and sick and everything is moving even if it isn’t spinning. I now have to start my journey again and that’s the point of this blog, because this time round I’m not as confident,have anxiety and am really disheartened that I’m back to this point. So I’m hoping if I can write down my feelings, set my goals, be honest on here and empty my head of all those thoughts rattling around, it might help to keep me strong and somewhere along the line, if anyone ever reads this perhaps it will help someone who is suffering like I am, and that brings me hope and gives me the strength to try again. 😀