Life in the dizzy lane

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. πŸ˜€

 

 

 

 

TTFN


When I began this blog I did so with the intention of charting my recovery from my prickly vestibular system and I planned to have a visual reminder of how much i have achieved and how far I have come. But I have realised over these last three weeks that it’s just not going to work like that. 

My achievements are small and boring, I made a cup of tea today, I swept the floor, it’s boring to me so I know it will be boring to everyone else. But it has reminded me that this illness just doesn’t work like that. It takes time, months and years rather than days to recover so it’s not a very positive way to cheer myself up. 

What I have found is I have a lot to say and for now I have said it all. So I’m going to leave this blog there. I will be back im sure, if and when things improve beyond the boring stage or if I feel that I have others things to say but for now that’s it. 

And it has helped to share my life, I hope for family and friends who never really knew, it has now explained why I may cancel on you at the last minute and for people suffering I hope it shows you that you are not alone. 

And all I want to say for those of you that suffer with any illness long term, don’t give up, you will get there, one step/day at a time. We are all warriors in our own way and long term illness does at least show us what is important in life so grab it and make the most of it, because you count. πŸ˜€

So TTFN and thanks for sharing my journey. 

Take care

Sara X 

Oh and PS I just survived a week home alone so I guess that is something to celebrate, something I plan to do when my family get home in about few hours…. Excited. πŸ˜€β€οΈ

A new fashion?


Every year I have the flu jab, and every year I get flu..right after, usually around my birthday and every year I say never again. But then I start to worry, what if I don’t have it, will I catch even more things? So I always go and I say to the nurse last year I caught flu after and they say “you must have been really unlucky” Do you know I had something to that effect printed on a t-shirt it says “I’m just that lucky” story of my life really. 

Catching things is the bane of my life because when I catch a cold, virus, flu or any other leurgy it goes straight to my ears and yes you guessed it ,it affects my balance. So in my house when my family start to sniff I feel like I need to get a hazmat suit out to protect myself because I just know I’m going to catch it. 

But the thing is my immune system is unbelievably very healthy, even though I have an autoimmune disease and anaemia the docs are always surprised at how healthy!!!!!! I am. Me too, you would never believe it really considering. But still I catch everything, except when there was the swine flu epidemic a few years ago my whole family caught it, I looked after all of them but I didn’t catch it…. Go figure. 

And that really is how my luck works, if something is expected then expect my body to do the complete opposite, when docs say oh that won’t happen, I know damn well it will, and it does every time. But what are you going to do? It’s just me and I feel like I should be wearing that t-shirt a lot more. 

Now school is about to start I guess I better get that hazmat suit out again because tis the time for the runny noses and sneezing, just don’t do it on me. And yes I’ve just booked my flu jab because knowing my luck I will one day be patient zero! πŸ˜‰

Barometric what?


So I couldn’t write yesterday, it was just too hot. Yes, we had been warned but I still landed up in 33 degree heat with a small, poxy fan just circulating over heated air. Uncomfortable is not the word. I spent most of the day spread eagle on the sofa, with said ineffective fan directed at me, in my undies. Glad my family weren’t here to see that! And then because I’m still alone I could have wept last night when I had to shut all the windows just incase a zombie happened to pop his/her/its head through the window (yes, I’m still reading the zombie series) so cue a sleepless sweaty night that I really don’t want to repeat. So today I’m grumpy and although it isn’t as hot I still wish we had installed that hot tub in the garden. 

On the plus side we did have the mother of all storms last night, with wonderful cool, massive raindrops and I did find myself out there dancing (OK, sitting quietly) in the rain which was nice if not a little lonely without my man. 

Aside from the usual uncomfortable reaction we probably all have to unexpected weather I also get barometric headaches, and they don’t go away with headache pills. Those you just have to put up with until the storm has passed.  I’m like a freaking barometer, if there is going to be a storm I know it. My ears start to fill up and my ear drums twitch. I don’t know how else to describe it, it’s like I’m standing next to the worlds biggest speaker, you must have done that as a child, put your head near the speaker to feel your eardrums move, well it’s like that but they do it independently and it’s not as much fun as it was as a kid. It’s odd, and tickles but not in a good way. But on the plus side at least I can always advise my family if they need to take a rain coat when they go out….. Looking on he positive and all that. The lightheadedness is not as useful, that’s just a pain. 

I’m also pretty good at predicting snow, although it’s not as accurate, I often wondered if I should have got a job as a weather girl and wonder if I have missed my calling. 

So although us Brits always complain about the weather I really am hoping for slightly cooler weather as the heat added to my already prickly vestibular system really isn’t doing me many favours, and I really hate complaining (honestly I do) but seriously can I not just catch a break? 😝

I like driving in my car……or not!


Today was better in some ways and worse in others. The meds appear to be out of my system so I’m now on my own, with a little bit of help from VRT. It’s a bit frightening going it alone but I have found its the only way to see an improvement in my prickly vestibular system. It’s good today because my head is clearer but it’s bad as my brain is a bit confused and isn’t quite sure what it has to do. Hopefully it will get it quicker than last time and soon I will see some improvement. On the plus side the vertigo seems to have gone so I’m hopeful I won’t have to make the decision as to whether to have the epley done again, because I really don’t want to. So tomorrow is a new day, baby steps and all that. 

Today I wanted to talk about driving. Now I should be clear on the rules, the DVLA say you can drive if you do not have sudden onset vertigo. I don’t, I always know when it is coming and it only happens when I’m lying down (not how one usually drives) so in theory I am OK to drive. To be sure I have asked three specialists to confirm this and they have all said the same thing. I am safe to drive, in fact I am less unbalanced when I drive because the brain is getting what it wants, movement whilst sitting still. And in the last 14 years I have never felt in any way bad or unbalanced or dizzy when i have driven. Not something I can say about walking that’s for sure. 

But I just can’t do it. I’ve lost my confidence. When I get behind the wheel I start to sweat, and shake and wonder but what if. What if something happens, what if I have a bad turn. And I know this worry is in my head but I just can’t seem to get over it. And I should get over it, because I’ve been told it’s a part of therapy, it will help my head. 

Losing my nerve for driving is the single most frustrating thing for me because I have no independence without it, I can’t run around after my family, I have to rely on others to do it for me. I hate it and I know it is my next big step. 

I almost got there before I caught the virus a few months ago, my hubby bought me a new car to inspire me and I drove it for about two weeks before I had to stop, because I won’t drive when I’m suffering from vertigo no matter what they tell me. 

So that’s what’s next, getting behind the wheel, and I’m freaking out at the thought already. But not yet, in a few weeks maybe. When I’m stronger. But I will get there and what an achievement it will be. 

So all of you that take it for granted, please don’t, because those of us with a prickly vestibular system would love to be in your shoes or behind your wheel. πŸ˜€

Work


Yesterday was horrible. Of all the things that I have had to adapt to and sacrifice because of my prickly vestibular system, I never imagined a holiday with my family would be one of them. But it is what it is and even though I’ve been looking up flight times and train times to Scotland so I can go join them the reality is I would be doing them a disservice. As much as my hubby feels guilty about going without me, it was the right thing to do. They deserve a holiday and if I had gone I would have held them back and that’s just not acceptable. So I plan to use this week to rest and focus on me and try my best to improve so when they come home I can say I am a little better. And Scotland will still be there next year so we can always go again. And yes I’m trying to be positive but I do feel very upset about it and may have shed a few tears but it’s time to shake it off and move on and live vicariously through them. So hubby, when you read this make sure you enjoy yourself, you hear me?πŸ˜‰

So today I wanted to talk about working and a prickly vestibular system. For those that do it, I sympathise, I have no idea how you can feel this way but still go and do a full day’s work. It must be so hard, you have my full respect. 

I do work, but I’m lucky I do it from home, my own hours and at my own pace. If im having a bad day I can choose to rest and the boss (me) isn’t going to complain. 

Having said that I recently got offered my dream job, it doesn’t come around very often and I was honoured , but the sad fact was I had to turn it down. I couldn’t have managed a 50 hour week no matter how motivated I would have been. And that breaks my heart a little. Another opportunity taken away from me, but all I can hope is when the time is right I will have the opportunity again. Everything happens for a reason and perhaps now is just not the time. I have to believe that, and one day I will get a handle on this and maybe you might see my name up there alongside my hubbys. It’s something to work towards and hope is all we have sometimes. πŸ˜€

DisappointmentΒ 


I was hoping that I wouldn’t be writing this but as my F***ing head hadn’t sorted itself out in time, so  I’ve just waved my family off on their road trip. I’m home alone and gutted isn’t the word. Usually I’m upbeat about my prickly vestibular system, but not today. Today, I’m allowed to be angry, upset and disappointed. Today, I’m allowed to say it’s unfair and I wish they could find a cure for me. Today, I’m just so sad that my head has stopped me being with my wonderful family for a week of fun and laughs, but tomorrow is a new day and all I  can do is plod on and hope next time I will be well enough to join them. Scratch that, next time I WILL be well enough to join them, because I’m not letting this happen again. 

Should I stay or should I go?


Holidays and being away from home can be difficult for some people. For me it is even harder. Staying in a new place, sleeping in a different bed, it’s difficult. I’m a home body and even if I didn’t have a prickly vestibular disorder I would find it hard. Did I pack everything, Have I thought of everything, where will we eat, what will we do? These are all questions that stress me out and any time away from home needs lots of planning and plenty of lists. As I’ve explained before I need control and being away challenges that. 

But with a prickly vestibular system that is even harder, will I cope with the journey, what if I fall ill, what if I’m sick while I’m out, will the holiday make me worse and how will I cope without being in my own home where things are familiar and safe?  

The reason why I have desperately been trying to get well since the virus hit me a few months ago and upset my vestibular system is because I’ve been on a countdown, a reason I had to get better. That’s why I have been messing around with my meds, taking things that are recommended by the docs but things I usually avoid like the plague, having the epley done three times in the hope that I will suddenly feel better, and that reason is because tomorrow I’m supposed to be going away with my family, on a 1600 some miles road trip to Scotland to visit my son and have some family fun. At the time that we booked it, it seemed like the best option. Flying was off the cards because of my ears and I thought it would be better to stay in the UK with the option of being able to return home relatively easily if I took a bad turn. 

But now I’m wondering what the hell I was thinking, I’m not well, probably the worst I have been in years, despite everything i have tried, nothing has worked and if I’m honest I have probably done more damage than good. If i had just let things rest and settle naturally I would probably be better, but it’s too late now. 

So I’m sitting here, knowing I have 24 hours to improve and knowing in my heart that no matter how much I wish it, it’s unlikely to happen (although I’m still hoping for a miracle). My hubby doesn’t want to go without me, but that is unfair. They deserve a holiday after all the sacrifices they make for me and I have to let them go and stay home alone. My heart is breaking a little bit but I know if I still feel this unbalanced tomorrow it would be selfish for me to go because if I do we might have to come home early, or I might land up stuck in a hotel room and not able to do anything. And that’s not fair on them. 

So as much as I wish for that miracle,I am starting to prepare for the fact that my prickly vestibular system has finally prevented me from doing something that I never thought it would. And that’s not ok and in a way it’s my fault. And I’m heartbroken. 😟

But you never know there is still 24 hours. πŸ™

We are family!


Yesterday was bad, bad with a capital B and a silent F word before. I thought I had experienced most complications of a prickly vestibular system, but that was a new one, one I never ever want to repeat. Once things had calmed down a bit, ie the evil sturgeon had started to leave my body, I was left even more unbalanced and dizzy than normal, and shattered. Not just physically but emotionally. Now I’m not a cryer, I’m just not. I don’t know why, perhaps because I’m worried if I start I may not stop but last night was the exception.  It was just too much, and I landed up sobbing and snotting into my very patient hubbys arms. And he didn’t know what to do, I mean he is used to me being strong, positive, but yesterday I just couldn’t do it. The reality is I have such a long and dizzy road ahead of me that yesterday it just got to me, at least for a while, and that’s what I hate about this illness. That I loose myself in it and sometimes it’s so hard to see the road ahead as its too twisty and turny, and all I want to see is that nice, neat straight road ahead. So today I’m back on the stemetil, it’s not perfect but I’ve got to do something to try to correct what happened yesterday, and that’s all there is, so here I go trying again, give my brain a break for a few days and then start it all from square one.

So family, well mine are great. They understand and are supportive but when you have a long term illness, whether it be visible or invisible it doesn’t just effect you, it effects them as well. And my family are unfortunately well used to it all after 14 years of this. But it’s still hard because there are things that I just can’t do. As I’ve discussed before I have to pick and choose what I do because there are always consequences, so I might be able to make a family function but I have to decide if a family trip to the cinema is worth putting me on my back for three days. I try so hard to do everything but it just isn’t possible, and they understand up to a point, but it’s difficult because I look fine, a little pale, but most of my battle happens inside where you can’t see.  If you see me walking down the street you won’t realise that I’m constantly shifting my inside balance to make sure I don’t fall over, I’m swallowing down the bile in my throat, and I’m trying hard not to to freak out because a loud noise has upset my equilibrium. But you don’t see that, and neither do my family but they still support me and try not to act disappointed if they have to go somewhere without me. And I wish so much, with everything inside that it wasn’t the case, I wish I could do everything but until this illness rectifies itself it’s just not going to be possible.  See I’m back to my positive self, because it’s a when and not an if and thankfully my family has that attitude too.  They have faith in me, in what I will achieve and that ultimately is what gets me through this. πŸ˜€

Never again!!

Doc told me to take stugeron if my head was unbalanced after the epley manouver, it dampens down the vestibular system apparently.  Took one this morning, cue extreme sickness and passing out for four hours. There is a photo, I’m not showing you because I look like the living dead. Can’t walk straight now and frantically doing my VRT to try to bring back my brain and get it online. Stugeron not for me obviously and I never want to feel like that again! πŸ˜±πŸ’© bad, bad day. 

Research, but don’t panic!


So yesterday I was at the balance clinic to have the epley manouver done again. I thought my left ear hadn’t been cleared of crystals when they had done the manouver two weeks ago but to all our surprise it was actually the right ear, it had filled again. Disappointing yes, but it happens so they tell me although I am slightly concerned that when they do one side they are moving the crystals back into the other but I’ve been told that’s unlikely (I could be backwards and forwards forever if that’s the case) Back to the epley they did it again twice and then for good measure they did a manouver called the semont. I’ve never had it done before and it can only be done if your joints are fully mobile. It involves laying down on one side with your head tilted and then at speed throw yourself over to the other side and face plant the table. It was fun….. Not, and my face feels like I have walked into a wall but they tell me it is a quick and violent way to shove the crystals out of the canal. 

I was told I will probably feel rough for a few days as they really gave me a work over and then will hopefully start feeling better. And my god, they aren’t wrong. The last two times I’ve had the epley done I have felt relatively good for a couple of days, this time I had problems leaving the room. My equilibrium is completely messed up, and my brain has no idea what it’s supposed to be doing. But I’m taking this as a good thing, does that mean it worked, because last time it didn’t and I certainly never felt like this so it was time to hit the research. 

I’m an avid researcher, it’s about control. If I know everything I can about what’s wrong with me and what I can expect then I feel i have more control of the illness itself. I won’t get blindsighted because I know what can and likely will happen with this illness. It also helps that if something happens and I know to expect it I don’t panic. (Well not much!)

In the past the docs have been impressed with my knowledge, but surely it makes sense, you need to know so you can cope or at least I do. It also helps when chatting to the docs that they don’t have to explain everything to me, I know what they are talking about and i can discuss new treatments and possibilities and they know I’m talking sense. 

The only down side to researching is that people only seem to post about their experiences when it is bad, they never seem to go back later and say “after this awful year I’m so much better”,so it can be a bit disheartening when you see people have been suffering for a long time with no let up. That’s why I hope this blog will have a happy ending I can share, even if it is a year down the line. I want people to know your life can improve and mine did in the past, the fact that I’m back at square one is just because I was unlucky, and not everyone will be. 

The final warning about research is yes, it’s good to educate yourself but don’t develope Web MD syndrome and convince yourself you are dying. The information should be used carefully but it is good to remember we are not doctors just educated enthusiasts.