Hi Camille,
I suppose you have the VENG, VEMP, ECoG testing done. If not start getting these tests to rule out obvious ear problems.
Also my symptoms stay within the best and worst bandwidth as in i don’t get so bad that i go “i have never felt that bad”. But my good days get better in quality if this makes sense.
Hello Vignesh!
I have not had any vestibular testing so that may be something that I will ask about.
That sounds good that you actually are having better good days and not “the worst you have had” bad days. Please keep me updated on how you are feeling.
Camille,
Step number one
Please have a cervical x-ray to rule out cervical rib or an elongated C7 transverse process if your doctor didn’t get it yet. Please make sure that the doctor write as above because my elongated C7 transverse process was misread years ago. I have bilateral thoracic outlet syndrome or let me correct "cervical outlet syndrome " just as in thoracic Outlet syndrome and is causing my vertigo.
Secondly, please see my Facebook page albums “Gracy Kalath” for information on Vertigo. You may be able to figure it out. Good luck
Hi Camille
It will definitely be worthwhile having vestibular testing, either to rule out any peripheral conditions (i.e. something wrong with the inner ear etc), or to find either a cause or just more information on your condition.
there are some very simple tests - one ENT i went to had me marching on the spot, with my eyes closed, for 30 seconds. i should have stayed in the same place (if you don’t have vestibular problems you will) but i was amazed to open my eyes and find myself in a different part of the room facing in another direction. i thought i had stayed still. it proved to both the ENT and me that there was vestibular dysfunction, something was verifiably wrong with my balance system, and not just ‘perceived dizziness’.
we all have (or have had) dark days. just remember this condition will not kill you. it is incredibly unpleasant and its very scary (especially if you are struggling for a diagnosis) but it is either completely benign (if true MAV) or mostly benign if MD or something in the inner ear. and worst of all, it makes you not feel like yourself. at some points last year i felt like my body had been taken over by aliens! just lots of weird unpleasant sensations going on. but you can get better.
remember this: you only have to get through one day at a time. on a bad day i just list out all the things i have to do to get me to the end of the day, and i commit to doing them, or as many as i can, and just grind it out. so when you are feeling like it’s all too much, just forget about tomorrow, the future, the past, all the big worries about stuff: just focus on the things you need to do to get you through that day.
they teach that in the military actually. i heard a female US military helicopter pilot talking about how she got through her double leg amputation after a crash. when she was in hospital the pain was so bad, that she didn’t think she could live through a whole day, or even an hour, so she looked at the clock on the wall and counted out the seconds because she thought the longest she could bear it for was one minute. and she did make it through that minute. and then the next minute. and the one after that. eventually she could bear the pain for 2 minutes. then 10. then half an hour. then an hour, then a day. she’s now a motivational speaker.
when i have bad days i think about that. maybe i can’t bear the thought of feeling this awful for my whole life, but i can bear it for an hour, or an afternoon, or a day, and i’ll worry about tomorrow when it happens. don’t let yourself worry about all that other stuff. just shut it off. just focus on one day. anybody can do one day of dizziness - we’ve all done loads of days. we can do some more days before it gets better. one at a time.
hope that helps!
Wow, thank you for your kind words. You are very right about the whole"getting through one day" thing. I find that half of my battle is thinking about the future and how long I can put up with this. And that just makes it even more exhausting. I will keep your words with me.
On another note, I do realize I have done some of those simple tests and the ent doctor. Same as you, when I closed my eyes and marched, I ended up turning like 45 degrees. I do wonder however, if I should do some more testing, but I worry about it being uncomfortable.
Lastly, may I ask how you are doing? Or what has helped you?
Thank you again.
That is more or less the definition of ‘anxiety’.
Have you had any psychotherapy to support you?
In the UK it’s quite normal to be referred to a suitably experienced psychotherapist when dealing a vestibular condition. I was and it definitely helped with the anxiety. The rest of the anxiety ebbed away with time and as the condition improved.
hi
i am doing OK. some days i’m doing great, feel like i’m getting there. other days i feel i’m slipping back into the woods. but overall i’m progressing slowly in the right direction, and i’m managing.
what helps:
drugs: pizotifen has helped a LOT, i’m 6 months in. soon to start adding in gabapentin.
i measure my progress: i have a chart (actually an xl spreadsheet) that i mark all my symptoms and my functionality on scores out of ten, morning and evening. it’s quite detailed. it’s important to mark the functionality too - because some days i feel like sh*t but i go for a swim and do the shopping and although my symptoms feel bad, if they are not preventing me from doing stuff and i can exercise and complete tasks, then that gets a good mark too. over time, you can really see your progress. like a few months ago i would struggle to make phone calls for work because of the terrible tinnitus. now i can make phone calls easily, and the tinnitus is in the background. progress. it also let me tell the doctor that i am making progress, but it’s very slow. i’m still having 4-5 bad days a week, same number of bad days as a few months ago, but the bad days are not as severe. it helps with the treatment. and if you become interested in your symptoms, they become less scary. you recognise them. and you learn what you can work with. like, oh today is about a 3 for photophobia, i’m going to need sunglasses… or today is a 6 for dizziness, i’m going to lie down and ride this one out.
Therapy: i had a few sessions with a cognitive behavioural therapist which really helped me to put it into perspective. an example: your brain starts filling with worry, anxiety, bad thoughts… imagine you’ve got on the wrong train. get off that train filled with worry thoughts, and get on a train full of constructive, rational thoughts. when the worries start, make yourself get off that train and get onto another. recognise your own behaviours and thought patterns… “what if something terrible happens…” becomes “well, what if it doesn’t”.
this website and others like it: you realise it’s actually an illness when you read other people with exactly the same problems and worries; and it’s not a terminal illness, just an unpleasant one.
accept the condition: i recognised that i am unwell and i tried to reorganise my life to allow myself the best chance to get better. i don’t try to be well, and to do all the things i’d do if i was well. i try to be realistic, changed to working from home (not easy, but managing) and i try to set myself little goals (first ride on the bicycle since i got MAV, first trip into the city alone, managing longer and longer drives, longer and longer walks, first round of golf, etc).
find things i CAN do and enjoy them: i can still eat and enjoy cooking and eating; i can read on my kindle no problem, i can now watch TV again (couldn’t bear to look at the screen for 4 months), i can help my kids with their homework, i can walk my kids to school (because i’m not on the train going to work), i can do some exercise (short swim, static bike, etc). if you can get a reasonable number of enjoyable things into each day, the days will look much less bleak.
hope some of this helps!
oh, and it’s really important to measure the good stuff, because human nature makes us obsess about the bad things, the things we can’t do, how bad we feel, etc. but if you can look at evidence that ‘today is not my worst ever day’ (and if it is, then tomorrow won’t be) you’ll begin to feel more positive.
i sometimes catch myself not thinking about my illness. that’s great.
Camille - One thing just occurred to me: you are on amitryptyline, right? and having depressive thoughts, and thoughts about suicide from time to time? or is it nortryptaline?
this is a well-known side effect of amitryptyline, which some people get. you should talk to your GP straight away, because it could just be the meds causing this. it’s one of the reasons they don’t use this as an anti-depressant anymore.
i took amitryptyline for a few days some months back - and i had moments of incredible depression, thoughts of there being no point going on, just started crying for no reason, felt like i’d fallen into a black hole, etc. i stopped taking it straight away. i preferred the dizziness to the depression!
Since starting the Thoracic Outlet syndrome exercises and avoiding hand movements my dizziness is much better. I am diagnosed with bilateral thoracic outlet syndrome with a simple cervical x-ray & plethysmography test. I’m waiting to see a vascular surgeon as since I started the exercise my hands are turning blue and is painful. Guess now my nerves & vein is getting pinched. I have posted a lot of medical information on my Facebook page albums " Gracy Kalath " and posts. It may be helpful.
I’m much better with my dizziness as I have avoided most of my arm use. But I have venous Insufficiency. Waiting to see a vascular surgeon. Here is my Facebook page albums link. I have posted a lot of medical information on Vertigo. Might be helpful.
Se connecter à Facebook | Facebook
Thank you so much for sharing your story with me and your insights! I really appreciate it and I love to hear how people are doing. I have a few things to say:
In regards to my thoughts and noritriptyline, I must say I don’t think for me personally that my thoughts are due from the medication. Last week was a really hard week. I felt really dizzy and everything looked upset surreal and scary. It was extremely hard to focus and I was at work on top of that. So it was so uncomfortable that I just wanted it to stop. And it’s those moments that I feel like I wish it would just end. But I’m actually not that depressed of a person. However, I am going to be switching medicines soon. I also think my hormones may have to do with making it worse? Last week was the end of my period and I did not feel good.
Also,
Do you think there is any change that healing my body first would heal my brain? For example, finding a diet that is right for me and possibly adding supplements instead of the drugs? I have this belief that possibly that could help? I don’t know… let me know what you think.
I think both body and brain go together. Good diet and plenty of moderate exercise (not over-exertion) will help.
I have had no problem with running. In fact I found for a long time I was less dizzy running than walking. I’ve chilled out more recently though in an experiment to see if that speeds up recovery as I saw this was one of Dr. S’s directives.
I believe that a healthy body is better able to heal itself, and I believe that trying to find your own personal triggers, strengths and weaknesses is the road to taming this thing - if not actually ‘curing’ it. It seems to be working for me - so far!
Positive thinking helps, but whatever is physiologically wrong has to be fixed for your body to function normal. My opinion.
Please don’t forget to read the note on the right side of the chart on dizziness that I have posted on my Facebook page.
https://m.facebook.com/gracy.kalath/photos?lst=100001983376674%3A100001983376674%3A1516109746
hi james I really don’t mind 
and if I can make one person smile and give them hope then im down with that to anyone that is suffering please try the meds they have been my saviour and also what helped me was was telling myself that this will not defeat me and I did everything that I did before this crappy stuff started even if it was an effort!! only one downside im now like a little roly-poly but im a happy roly-poly 