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#21

Hi Nathan,

You had this when you were 22. SInce you are 29 you have had this for 7 years. How many attacks have you had ? You said “2 year attack”. Does this mean you had a remission in between and it came back ?


#22

Another nail on another head.

Yes, I still get this from time to time. Unfortunately despite my vestibular and neurological symptoms having mostly gone, I still having persistent tinnitus, an intermittent clicking sound and fluid sensations in my ear every so often. That still gets depressing very occasionally and one can feel minor anxiety that the vestibular stuff will return imminently.

However, it’s soooooo much better than before … overall I’m still optimistic this thing will keep on fading!

Also, it’s very important you engage yourself in something you find truly interesting and compelling and this will totally distract you from the remaining symptoms.

Right now I’m doing some forum coding and loving it :man_technologist: :slight_smile:


#23

James how can we get involved in something when the dizzy unsteady symptoms are very bad and we actually can barely walk at times?
Its all good people being positive etc but as you will know it can be a impossible struggle .
Whats your brief symptom history and how have you got to the kind of symptom free period now?
How long has it been going on?


#24

This you need to take care of first.

Time is likely to help in this regard, but you may not get better if you give in to it and stay in bed.

It’s better to get outside and walk, however nauseous or uncomfortable (within limits of course) and help your brain adapt to the issue.

You may not be ready for that, but you will know when this is possible and at that point you should go for it, but if you can walk through the house, you will find it even easier to walk through a field.

It’s definitely not impossible … those that end up permanently housebound are in the tiny minority (but yes we have one or two on the board in that situation).

I’ve had I suspect ALL of the MAV symptoms except visual snow.

Very rough quick timeline off top of head:

  • April 2015 had a quick shower before going out for lunch, pointed shower into ear to clear some wax having turned down heat and power to minimal levels. Despite this felt uncomfortable. 15 minutes later when walking along street started to feel dizzy. By following morning I was incredible dizzy and imbalanced and very nauseous. What followed was 5 weeks of intense imbalance, nausea and then suddenly … it went!
  • no symptoms for 5 months aside from a sensation of fluid in my middle ear every morning
  • October 2015 was in meeting at work and suddenly felt very lightheaded and strange as if i’d had a stroke. Became very anxious, went to GP who told me it was probably ‘a virus’.
  • Intermittent dizziness went permanent, had marshmallow floor experience when I walked outside, things started to swing left and right in my vision, anxiety worsened.
  • Extremely uncomfortable in malls and supermarkets. Strange sensations of one leg being longer or heavier than another when in a place full of artificial light.
  • November 2015 started to see specialist who dismissed my ear trauma and told me I had migraine (wasn’t impressed!)
  • April 2016 started to be floored in bed with 14 hour attacks every few days. I couldn’t even shut my eyes or I would throw up … had to stare at the wall for hours on end without moving a single muscle. At other times I would lie in bed, stomach churning feeling nauseous for hours on end. Horrific, thought about suicide. Couldn’t look at screens anymore. Despite all this I got out and walked as much as possible, even did housework. Very uncomfortable.
  • Specialist called these migraines and told me to take Propanolol … which didn’t work … then Amitriptyline … WHICH DID!
  • Ramped up to 20mg and dizziness was more or less in control (but not imbalance, still had lots of that!)
  • Daily I would go for very long walks outside along the canal. Initially uncomfortable for first 30 mins I would eventually feel better and realised they were having a really great effect on my anxiety which together with the drugs was ebbing away.
  • Attacks stopped for several months until something like November 2016 when I was hit with a big ‘magneto head’ attack. I also started to get spinning attacks. I was very upset because I thought the drugs were protecting me, but they were not doing so completely. (imho drugs don’t prevent vestibular attacks, just the migraines, there’s a distinction)
  • Spinning attacks worsened for about 6 months to a year. During one phase I could not lay down without a severe vertigo attack. I nearly threw up each time but somehow managed to prevent myself.
  • May 2017 Went on holiday to China, with symptoms still fluctuating. Decided it wasn’t going to ruin my life and that of my wife. I used the hotel gyms … excursions were very good distractions
  • September 2017-ish noticed symptoms were improving so decided to back off on Ami. Stopped completely within 1 month. Encouraged by still being able to use computer I persevered.
  • May 2018 imbalance started to disappear
  • Couple of relapses since … know that I’m not far from losing my balance but its in remission and largely under control
  • Tinnitus and fluid sensations till haunt me, but many symptoms have gone.

I’ve missed out a lot above, including all the alternate opinions I sought (I have several diagnoses of MAV, ‘something central’, ‘Hydrops’ & ‘Secondary Hydrops post PLF’)

I went to see a psychotherapist at one point and he really helped me with the anxiety and how to help myself with it (though his exercises gave me TMJ, but that’s another story!)

A good summary of what I had and no longer have is here - it’s preceded by my full history:

In short I suspect I worsened for about 1.5 to 2 years (from the day the chronic symptoms started, not from the trauma - add half a year for that), limited the impact with drugs, then started to improve.


#25

Thought I’d chime in @Chawnz What @turnitaround has said is spot on. I relate to all of what your saying however the harsh truth is this illness is shit and don’t think anyone gets it unscathed if it’s chronic . For the first 6 months of this I just cried and cried I couldn’t walk everything left me feeling awful. However I knew even then there was no quick fix .

Right now your at the worst of it BUT meds or time it will start to ease up remember that . Keep a diary I still have one log everyday how you feel on a 1/10 what you did what you ate find it triggers and lessen them .

Do little things for me it was walking around my house for a while . Try to relax have a bath meditate whatever you can when ur in the worst it . Little by little you’ll realise you can do more . I’m 11 months in I’m not back to normal and I still have terrible days weeks whatever BUT I have improved regardless . I believe in what @Nathan has said in the dizziness isn’t going anywhere so do whatever you can with it there . This is me everyday I work I’m dizzy af but none of my clients would know .

I don’t want to come off harsh because I’ve been there I really know how depressing and awful it is there aren’t even enough words BUT small steps gradually that’s all you can do and lean on everyone here for the days it’s hard to bear everyone will pull you out of it . @Onandon03 is great and always has worlds of wisdom , stern words but sometimes I needed it . Anyways we’re all here :slight_smile:


#26

No apologies needed, I’m just glad my posting here was helpful for some people :slight_smile:


#27

I saw a lot of different doctors when I first got vertigo, getting all the usual tests we all get (MRI with contrast, CT with contrast, blood tests, heart ultrasound, etc), and eventually ended up at a special vertigo clinic. They were the first people I saw who were really helpful and explained that I had MAV. It seemed like a very random diagnosis at first because I don’t get many headaches, but it does perfectly match all my symptoms. They had a good conversation with me about what to expect, which made me feel a lot better ever since.

Then the second time I got vertigo (about 6 months ago) I was in a different country, so I went and saw the doctors here. I got more tests MRI’s, blood tests, and heart scans, with all coming back clear just like the first time. So the second time it has been a lot easier for me to get over the “will I die?” stage.

All the best in your recovery!


#28

When I was 22 I had an attack that lasted quite badly for 2 years. I was very affected and couldn’t work for about a year, and also had to put my university degree on hold. I say 2 years because after 2 years I could work, study, socialise, exercise, etc, again. But for about 3 years after I had lingering symptoms, such as random feelings of dissociation or very mild vertigo. However, during this 3 years I was still able to live a normal life.

Then after that I was about 99% symptom free until 6 months ago. I came home from a big day at the beach and all of a sudden everything was spinning again. Naturally I had anxiety, dissociation, everything that goes along with this condition - but I went to bed and crossed my fingers that I’d feel better in the morning. Unfortunately that didn’t happen and here I am 6 months later going through the recovery process again :slight_smile:


#29

Yes I totally agree the mental aspect is the most important.

The way I think of it is to imagine if I still had vertigo, but had 0 depression and 0 anxiety, and was instead feeling happy. Would it be so bad then to have vertigo? I mean it would still suck but without the anxiety or depression it wouldn’t be anywhere near as difficult to live with.

To me this is a comforting thought because anxiety and depression are things I actually can have control over, unlike vertigo which the doctors can’t do much for. Just like going to the gym to improve your physical health you can always improve your mental health.

I think mental health is similar to physical health in many ways. You have to keep adding to it to prevent it from deteriorating. You will always have bad periods in your life mentally, but you can control whether the overall trajectory is upwards or downwards. I’m always researching and reading into ways to improve my mental health for this reason.

On the physical side of things I love running as someone with vertigo. To me running is the ultimate “screw you” to vertigo. I know it must sound silly but running through the streets while super dizzy feels like an act of defiance. I have a condition I didn’t choose to suffer from, that is trying to hold me back, but I’m challenging it and refusing to let it define my life.


#30

Haha. Great thoughts Nathan.

So right about the mental aspect.

There are a few symptoms I found which are very hard to have zero mental upset with eg nausea, brain fog which you can’t escape no matter what you do (without medication)


#31

hi, quick reply here (as I rush to finish a presentation for work!.. stress is not good friend of MAV, living on the edge here…). Anyway, start with something small to look forward, and do it. Do it despite feeling like crap. Clean the yard if you have it, go for a small walk, listen to a radio show, watch a tv, just sit in a bench in the park. Slowly things get easier, and slowly you start enjoying things again and, then suddenly you start looking for things to do, and planning and almost living a normal life. Just start slow. Sleep, rest, it is important, but also go out, so at the end of the day you have memories of the day that are funny, interesting, other than your symptoms.


#32

Hiya, I know how you are feeling and I’ve been there. At the beginning of this illness, it’s terrifying and very stressful, I know trying to be positive can be a stretch but I think it’s essential to get up every day and self declare that this illness won’t win… I do this everyday and it helped me mentally at the start, I recall trying to walk meters at the start wobbling all over the place and swearing at the illness, I verbally told it where to go… I did this everyday… Some days its mind over matter. On days where you just can’t physically move, then do something like colouring, really to keep your brain engaged in something other than the sympthons.
I’m two years in and starting to see improvement with time, acceptance and meds of course.
You will get through it, sometimes life is a hard journey but it’s essential to keep stepping forward even one step at a time. Best of luck


#33

I hope your ok. How long haveyou been suffering? What sort of symptoms?


#34

Hey Nathan, thanks for sharing your experience. Lifestyle goes a long way to managing this like sleep hygiene, exercise and eating healthy. I am pretty sure you would have trialed meds and not sure what your stance on that is. If you ever are open to trialing a med I highly recommended Effexor/venlaflaxine. You don’t need a full capsule but can start at 1/3 of the capsule opening it up.


#35

hey, since january this year… many symptoms, the worst the rocking head 24/7 at different intensities.


#36

Hi im not at the start of this. Its been going on for nearly 7 years for me.


#37

Oh I didn’t realise gosh that’s a long time for sure, it’s an awful illness for sure, hope you get some relief soon x


#38

Thanks so much Nathan you story is very interesting. :slight_smile: so the people you saw said mostly everyone recovers fully eventually ?

Could I ask when you had this for 2 years was it by the second year you were back to 80% I’m a year in and better but still limited to clubbing walking in busy places ect I also get super spaced out in busy places and it’s so uncomfortable . Anyways also so great to hear this second time ur coming out of if faster :slight_smile:


#39

Chawnz,
Have you tried other meds?
When I first had vestibular problems, and they were very intense, computer screens and reading made my symptoms worse. For almost a week everything was constantly spinning and then progressed to a sensation of rocking on a boat. I live in an older small home and there was always a wall nearby that I could fall for! I found that if I walked quickly, I was far less dizzy and much more accurate. Even now, it is when I am moving slowly is when I may get into trouble. I tracked what I ate, and found food which caused problems. I watch which side I sleep on, and sleeping in an elevated position helps. I am on a combo of Topomax, Propranolol and get Botox shots regularly. The more I forced myself to move and play music the better I felt. I did feel very sick while playing the cello at first, but I did feel noticeable improvement each time that I practiced. I had to take Valium at first so I would not fall off my chair when I played. During the worst of it I felt suicidal and hopeless. You may have something different, or a combo of problems that are making you miserable. I am sorry that you have had to lay on the floor in an Apple Store, my heart breaks for your experience. Please try to continue to push yourself and be brave. The Propranolol reduced the dizziness, rocking sensation and anxiety. Perhaps a very small dose might give you some relief? The Botox has given me the most relief with the ear pressure, but I still have some of the high pitch tinnitus. I wish you the best of luck.


#40

Sorry just saw this I’m 30 and live in london , I get most of what your saying and also was on and off till it came and stayed . I don’t get spinning more rocking sensation/ detachment feeling , sensitivity to light all sorts of wierd head feeling .

I’m still trialling to go through meds to gain control it’s so thought but I do do believe we’ll all get there is just isn’t a straight road that’s for sure . Have you seen a neuro oto? Or was it ent ? I went to royal ear nose and throat for my testing

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