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New regular symptoms


#1

Hi everyone. Just giving a brief update to me and my crap life over the last 6 months :disappointed_relieved:.
So over last 5 years ive had a bad vertigo problem once a year last about a week or so. Up until recent it came on then cleared then came back again and has stayed now every day for last few months.

Im now pretty much house bound and its just ruining my life. Symptoms are
One side tinnitus high pitched. (And ive been told by a nuero that menieres is mainly just low pitched tinitus)
Fluctuating noises same ear
Nystagmus most times. Rotational and one side rotates and other up and down
Major balance problems.feel like getting pulled pushed to the floor
Quick drop attacks lasting a matter of 2 mins
Big problems with screens. My eyes like jolt or my head does from being watching screeens etc. Like big shift in balance
Alot of Anxiety now. Panic attacks etc just due to the fear of not wanting to be out of my comfort zone due to being scared etc

The dizzy spells will clear wwhen i lay down flat after a short period of time.

Current med is pregabalin
Tried dieuretic

Neuro otologist in london has recently said it some sort of migraine with bit of menieres but the problem now is anxiety causing these daily problems as menieres is not a dailything. :thinking:.

Im torn and ruined right now. Laying down all day practically. No matter how hard you try to be normal , if the dizzy appears then got no chance. I literally need help its happening daily now !

Whats everyones genuine thoughts please,? As im now lost and dnt see any sort of solution. The. Dr even said the pregabalin wont be doing much now but continue with it.

Im doing cawthorne cooksey exercises which i think help abit but literally everything is a struggle like even getting up to cook etc and balance is knackered

Thanks for listening to me

Oh and aged 34


#2

Hello Chawnz,

Sorry to hear you are suffering still.

Had all these save the drop attacks. Unfortunately I still have 1 sided high pitched, hissy tinnitus, though it’s slightly better and I’ve learnt to tolerate it mostly.

Yes chronic 24/7 dizziness is probably not Menieres, and is a MAV-like syndrome.

I’m almost back to 100% from the start of chronic MAV but took 3 years save for the tinnitus and mild HF impairment in one ear.

Improvement with medication and over time generally solved my anxiety issues, but probably took well over a year to get that under control.

There are loads of things you can do:

  • stop reading medical journal articles
  • eliminate caffeine (this may also improve the rest of your symptoms)
  • find a medication that works properly
  • go out for long walks and enjoy nature (staying in is a very bad idea!)
  • socialise more
  • read some of the more positive posts on this site
  • go get some psychotherapy, e.g. CBT, Mindfulness from someone who knows what they are doing. It really helped me. Discuss with your doctor.

I started to improve in earnest around 1.5 - 2 years in to the chronic phase. It’s a long haul I’m afraid.

It’s always a fight, especially at the start.

I’d get a bit more stuck in to exploring more of the medications.

Start at the top of Hain’s list if I were you.

A great protocol is published on Dr. Hain’s excellent site, at the foot of this page .

You mentioned your ‘eyes jolting’ - I found Amitriptyline fixed that for me @20mg nocte.


#3

I cant go out if im very unsteady. And that is most of the time.
I dont know what to do.

Its just broken the pattern i was finding.
It used to happen 1 or 2 times a year and last one week and now its not gone. One of the only things i can thibk of that is a major coincedence is that i was seing a upper cervival chiropractor who even after the first adjustment helped alot with my symptoms then after about two months i think she did something wrong as i remember my neck was throbbing for a weekend and my dizzy stuff has not gone away since then.

Yes its defo pulsatile tinitus and tinitus on my right ear
thing is i dont think the outside is spinninng when i have attacks but moreso just my inside spinning.
Whats your thoughts?

Glad your under control now. Lets hope its gone forever


#4

Hi @Chawnz

@turnitaround has given some great advice
I would say this sounds more like mav than menirres

I’ve had dizzy spells on and off my whole life then last October they came and never went I had a whole load of what you describe and lots more . Visual snow / shimmering / pressure in my head ect

Some things to remeber the first is YOU WILL improve your not broken your body and brain simply isn’t working well together right now .

I had to try 5 meds before one helped and I’m not out of the woods just yet . Find a good neuro otologisf who will work with you through the meds

Once one starts to help things will become a lot easier :pray:t3:


#5

Hi Amy, thanks for taking time to respond. I guess us sufferers have alot of time on out hands. Lol

Yes it just doesnt seem to be clearing no matter what i try etc. I just seem to fighting a losing battle. Its got a mind of its own.

Well this neuro is in london royal ear nose and throat so thought they may be the best etc. Although appointments are still very rushed and frustrating.

Yes i defo have alot of visual problems now. Like when concentrating when on macbook doing work or even on phone talking to you now i get jolt like sensations in my legs or head at times. Its just a absolute mess! But these sensations can be alot worse at times and these can push me to the floor as such but the moment i lay down etc it clears but i will be paying for it for about the next day or so.
Have you had these issues then?
I was in apple store and then it all came on and i had to lay on the poxy floor in a busy apple store. It was a embarrasment.

It doesnt feel likevertigo as the surroundings are not spinning. Whats your thoughts on trhis and what have you learned?

Yes the meds will have to be the savious i think.

Im 34 and used to have a social life etc but its changed now .
I live in uk. Where are you?


#6

What does it feel like? True rotary vertigo is, either, the room spinning, or you feeling you are spinning, round and around, either internally or externally.

Don’t feel embarrassed lying on the floor in Apple Store, I’ve a friend who regularly lies on the floor. Lidls, Tescos, Waterstones, she’s not proud! Better than falling over. Helen


#7

Hi thanks for your reply.
I sometimes when it comes on feel like its my inside spinning as such.
I have intense nystagmus. I had to call ambulance a couple months ago . When it came on at that time, i could barely open my eyes without a strong pushing pulling somewhat spinning sensation.
The neuro told me its not menieres as i dont feel the surroundings are moving. I think anxiety is defo aggravating the problems right now and i need to get that sorted.

I have three different thing going on in one ear. One is high pitch tinnitus, one is pulsating tinitus and the other is fullness. So im knackered really lol.

What are your problems and how are you managing them? As im lost with it all now. Dont know what to do next.

I had a bad motorcycle accident 15yrs ago and i think its to do with that so i went down the route of upper cervical realignment as she did say it was out of line and after the first appointment i felt normal again!! I was so happy but then its reappeared with vengeance! Also thought could be tmj as my jaw clicks and got worse over the last five years.

We are anxious and paranoid but its not our faults! X


#8

My advice would be to battle the anxiety you are experiencing as a seperate thing to the vertigo.

I’ve had permanent vertigo 24/7 for about 6 months now, and actually it’s even worse now that at the start. I also had an attack while younger that lasted a full 2 years, with lingering symptoms for another 3 years. So I feel qualified to provide advice on your situation.

However, my quality of life has greatly improved by focusing on the anxiety, because that’s one thing you can actually fix. I can now go to the gym and walks by myself even though I’m completely dizzy the entire time. I can socialise too without people noticing what’s going on in my head. I can work and manage a family. Yea life has a lot of crappy moments but I don’t struggle with anxiety any more.

I’ve also had some really interesting experiences which have opened my eyes to just how integral the vestibular system is in our lives.

For example yesterday I walked about 10km through the city while experiencing the most intense vertigo imaginable. Everything was moving so hard my vision was unfocused and I kept getting sensations of walking uphill even though I was on flat ground. I was so dissociated I was feeling confused, and like I was on the edge of conciousness. I swear it was like being on LSD or something.

But I tried to take a scientific approach to the way I was feeling. My phone measures heart rate and oxygen saturation so I would occasionally stop and take measurements to remind myself that I wouldn’t lose conciousness and this was all just my totally fucked up vestibular system changing my perception of reality.

It was kind of interesting actually, and made me realise that most people don’t get to properly understand their vestibular system in the same way we do.

Anyway, my point is that if you fight your anxiety you’ll be able to get control of your life back again, even if your symptoms don’t go away. If you start exercising regularly you’ll learn how to walk/move while dizzy and you’ll stop falling over in public, that only happens at the start of cronic vertigo when your brain isn’t used to balancing without using signals from the vestibular system.

How to battle anxiety? I did it through exposure therapy. Basically every day I try and put myself in a situation that makes me anxious, and I try and increase the level of anxiety as much as possible. Usually that involves going for a big run while dizzy, or doing things to trigger the vertigo more like drinking coffee on an empty stomach and then spinning around. Each week I find it harder to make myself anxious than the previous week. Sometimes I go a little too far with the anxiety and have to pop a Valium, but that’s only happened a couple of times.


#9

Now that’s very similar to me. I had self contained episodic attacks 12 years, no symptoms between at all, then BAM it all became 24/7.

From what you post I’d say it sounds alot like MAV although I’m not sure about the ‘drop attacks’.

So, how/when do they return. When you sit up? Perhaps sleeping on more pillows might …?

Not exactly the best assistance in the world, eh. If they’d just thrown in BPPV, you could claim the complete set. Talk about keeping their options open!

Well, MHO, as a MAV sufferer for 15 years I’d say, as you seem able to access London, try for an appointment with Dr Surenthiran cos he’s Top Guy. You’ve suffered long enough.

I’m no medic, just a long-term fellow sufferer but two points I’d really like to make (@turnitaround and @Amylouise have already covered alot)

Time to stop this I’m afraid. It won’t help your balance at all. Quite the opposite. The human body is designed to move. The less you move about, the worse your balance will become. Balance needs daily practice. My criteria is always. If you are well enough to -somehow, however awkwardly - walk to the bathroom, you are well enough to get up,

Try not doing them for a few days. It could be aggravating your situation. Helen


#10

After a more thorough reading of yr posts, You do really need to obtain a more definite diagnosis. I think your best bet is to get to see Dr Surenthiran. He specialises in dizziness. balance, tinnitus and hearing loss. Your anxiety should start to settle once you have a firmer diagnosis and a treatment plan. Helen


#11

Pregablin is meant to be very good for anxiety (and MAV) perhaps that is why your specialist prescribed it. I’ve started seeing Dr. Surenthiran and he says “it cuts through anxiety like a hot knife through butter at the right dose” What dose are you on? I was told that usually a therapeutic dose is between 150 - 225mg per day which you build up to over several weeks (sometimes someone needs more or needs a combination with another drug) and you would need to be at that dose for 4-6 weeks to see benefits.

I am trying pizotifen first and then perhaps the pregablin. You have to be patient, it can take a while for the meds to kick in and to find the right med. I’ve had Migraine Variant Balance disorder (but was misdiagnosed/treated for most of that) for 22 years and had many, many almost symptom free years where I could just get on with my life (except for one or two weeks a year) while avoiding a few of my triggers (alcohol, caffeine, late nights). Perimenopause has kicked in and banjaxed my life for now.

Look at a table of migraine preventative meds - there are loads to try and different combos. You just need a Dr. who will stick with you and not discharge you at the first sign of improvement (happened to me a few times). You don’t have to stay on the meds forever - once you are feeling better on them you take them for several more months and then can taper and see.


#12

nathan wow i was quite taken back by your reply. its heart breaking but also comforting that you and all the others on here are suffering so much and there still is no cure as such.

well done though on your courage. how on earth do you manage to keep walking when its happening? mine puts me to the floor pretty much.

you are a very strong character so hats off for that too.

when i was getting symptom s like once a year for a week i was able to battle it. my anxiety wasnt that bad and after a week it all cleared up and i wen tback to normal again but now its constant but not bad and the anxiety has taken over . i fear stupid things like will i be able to make it to the shop to get some food and shame and embarrasment etc. my life has changed . im strong but this has been beating me for a long time now.

how old are you ? just big well done though and well done you got your anixety in check. i seing a therapist next week for cbt or whatever it is. but i need meds now !


#13

im a 34 year old bloke helen and i just hate the feeling of the major dizzy spells. so im doing minimal to not feel those debilitating symptoms. its destroying me to honest. i have my own business and that is just a complete struggle now.

well up until this year they were happening for about 1 week at the end of the year for about 5 years. it led me to think it was seasonal like pressure changed as it always happened about the same time which was strange but then this year it happened and then it cleared so i thought ok just get on with my life as such as balance was fine then it returned and its every day problems now.

its a mixed bag of symptoms to be fair. sometimes i can move my head quick and it may feel like ive left my body behind like when getting off a lift and it lasts about 2 seconds then now the main sort of trigger seem sto be coming from screens and visual problems. like being on laptop for too long makes my head feel full and heavy and it can cause the dizzy crap then on and may last 10 mins or so. those drop attacks i mentioned have been happening for a while too. like it almost feel like a electric shock going through my head and couple of times its literally come on fast and practically put me to the floor. but the moment i lay flat with head propped abit it clearing.
now all these symptoms are overlapping with diagnosis as these drop attacks could be tumarkins which is later stages of menieres or as the neuro said they are anxiety attacks.

ive researched anxiety alot and alot of those symptoms in anxiety are much the same as im experiencing so im so bloody annoyed frustrated etc at what it really is. anxiety can cause dizzyness and body shocks etc. fatigue , fullness, tinnitus.

i cannot plan anything as dont know how i will feel. its so unpredictable now and im just devastated.seing a councellor next week privately to try calm the anxiety down.
see bppv i dont know if thats my cause or not? ive done no head thing to try move the crystals as such around.

well its funny you say dr sureenthiran as i saw him when it all started about 5 years ago and i stopped seing him as i didnt think it was helping atal so went to london instead and they spent more time with me and did lots of tests. dr s did nothing for me and literally be waiting to see him for like 6 months and then when i did , all i got was how are you ? and spoek for 5 mins so i thought stuff that and seeked help elsewhere.

where are you based then? i live near london
so are your symptoms under control now or are you home bound too as such? what are you experiencing right now whilst we are talking today?


#14

hi ya. thanks for replying. wel ive been taking pragabalin (lyrica) for a few years now. , dr s i disagree with as im on 500mg a day and still have big anxiety issues. i guess people are suffering at different degrees to others and some meds work better for others. my neuro in london has told me now not to increase my pregab and also to come off the dietetic which was designed to pull the water from inner ear.

dr s did not much for me atal and so i went to london instead who spent alot of time with me on appointments etc. worst thing is if i knew the cause then i could really battle if and sort it possibly but with this it is just a big mystery and there are many causes.

meneires is just a collection of symptoms.
all i know is when my ear is playing up then im going to be suffering alot.

im lost with it all.


#15

In any case they say you can achieve the same thing by water loading - just drink lots of herbal tea and water and your kidneys will be kept busy.

Diuretics don’t survive Cochrane review for effectiveness. However there is anecdotal evidence they can reduce inner ear pressure.

If you are suffering from inner ear pressure, it’s very important to get the anxiety under control as there is a theory that Anti-diuretic hormone is produced when one is under stress causing water to be retained and this will just exacerbate the problem. This is one of those vicious circles you need to break out of.

Also don’t spend your day lying down - your ear will be under greater blood pressure lying down. You need to be standing and walking as much as possible.

I’m certain my inner ear pressure has reduced without the use of diuretics. I have several green flags for proof - I no longer get as much sound distortion with loud noises, no feeling of ear pressure when in cars and finally I no longer suffer from vertigo. The biggest sign is that I am no longer dizzy and don’t suffer imbalance anymore.

The tinnitus tells me it’s not yet back to normal completely though!


#16

Hi Chawnz, the one thing you can guarantee in this forum, is that we all understand what it’s like to go through what you are going through, because we are all suffering the exact same symptoms to a large degree. So please don’t think you are alone in any way. Everyone here can relate to you in some way. I would say the number one symptom that defines people on this forum is chronic 24/7 vertigo, probably followed by anxiety.

Anxiety and vertigo cause a wide variety of other symptoms. Vertigo causes problems with vision, memory, fatigue, depression, thinking patterns, dissociation, derealisation, visual noise, tinnitus, feelings of being on drugs, of being about to pass out, etc. Then on the anxiety side you can get a whole host of new symptoms like chest pain, stomach pain, sweats, impending feelings of doom, shaking, dry mouth, etc.

But I firmly believe that 95%+ of the symptoms people here get are related to either vertigo or anxiety. There’s just such a huge variety of symptoms these two issues cause.

I’m 29 years old and had my 2 year attack at the age of 22, so I have some experience with this condition. The first attack was absolute hell but it taught me a lot of mental tricks that have been helping me the greatly the second time around.

When you first get MAV you go through some distinct stages. The first is the “am I going to die?” stage. That stage can last quite a few months but usually after you’ve seen enough doctors, had a brain and heart scan, you can get past this stage. People in this stage often get anxiety so bad they end up taking a few trips to the ER. It’s nothing to be ashamed of, it’s natural to reach stages of anxiety you didn’t think were possible in the first stage of this condition. Even one of my vertigo doctors told me that vertigo conditions are defined by the irrational fear of death he initially sees in his patients. I can still remember being in hospital many years ago begging doctors not to let me die with tears in my eyes. I honestly thought I had only minutes left on this earth. No amount of reassurance by the medical staff could convince me I wasn’t about to die. The anxiety was so bad they ended up injecting me with an anti-psychotic, then giving me a huge dose of oral Valium. It took me several days to feel normal again. It’s almost comical to think back now on how absolutely terrified I was. I made about 3 trips to the ER during this stage before I finally gained the strength to keep my panic from tipping over the edge into 100% freakout mode.

The second stage is the “I can’t walk around without falling over, and I’m so anxious I can’t leave the house” stage. At this point you know you aren’t going to die but you are still wracked by anxiety. You probably feel depressed and have a lot of thoughts like “why me?”. It sounds like this could be where you are at right now.

The second stage is where you have to be at your strongest, because unlike the first stage you have to push through this one without drugs and trips to the ER. I recommend exposure therapy, reading about anxiety techniques like mindfulness, cognitive behavioural therapy, acceptance and commitment therapy, and dialectical behavioural therapy. It will also help to listen to useful self-development podcasts which focus on finding meaning in your life, or which deal with depression.

Just as important as the mental learning, you NEED to become physically fit at this point. It’s the only way to recover. Sitting around the couch is NOT the solution, it just stretches out the dizziness indefinitely as your body is not forced to adapt.

I recommend getting a pedometer or a phone which can count steps, and starting off with working up to 10,000 steps per day. I started off in my house just walking around a table in a circle for several hours, with breaks every time the dizziness became overwhelming. Then after a couple of weeks I started walking around the table while moving my head around a lot to provoke the dizziness. The idea of this stuff is exposure therapy, and the idea is to challenge yourself. If you aren’t getting really dizzy you aren’t challenging yourself enough. Don’t be afraid if you get especially dizzy for the first few weeks of this routine, like you’ll do the exercise and feel dizzy for the rest of the day. This is normal and part of the slow process of teaching your brain to walk without relying on the vestibular system.

After doing this for a while your balance should get to the point where you no longer fall over no matter how dizzy you get. At this point you can start getting a portion of your 10,000 steps per day outside. Try and slowly work up until you can walk 10,000 steps outside each day no matter how dizzy you feel. This is a good way to practice dealing with anxiety at the same time. I guarantee you will have a lot of very anxious moments walking around outside in crowds while super dizzy, but you will get used to this too.

The final stage is starting to run. This is where I’m at right now, I’ve been running for about 3 weeks now. Walking no longer provokes the anxiety any more, so generally when I wake up really dizzy the first thing I do is put on running shoes and go straight out the door. I like to have at least one huge rush of anxiety before breakfast :slight_smile:

Remember the goal of all this exercise is NOT to stop feeling vertigo. You’re just setting yourself up for failure and disappointment if you think like this. Measure success by what you achieved IN SPITE OF being dizzy. In fact the more dizzy you felt the whole day the more proud of yourself you should be of achieving things.

Once you’ve seen a bunch of doctors you’ll likely realise what the nature of this condition really means. It typically lasts for 2-4 years regardless of what drugs you take, and about 90% of people are in full remission by 7 years. Migraine diets work for some people but are useless for me - I don’t appear to have any food triggers despite careful experimentation. Most drugs are absolutely useless except for Benzos which you can only take very occasionally as they are addictive and can actually delay the process of brain adaptation to vertigo. But I always keep a Valium and a Clonazepam in my wallet just incase. It’s nice to have that security on hand knowing that I can end a bad experience if it strikes me suddenly at a bad time.

Once I realised this I stopped focusing on the vertigo which I have no control over, and instead started focusing on two things I can control: my physical health, and my anxiety. So I concentrate my time now on running, doing at least 10,000 steps per day, working out with weights at the gym at least 5 times per week, and daily meditation or mindfulness practice. I’m still super dizzy, but it doesn’t control my life like it used to.

One thing I should warn you about, getting over anxiety doesn’t mean your life is suddenly fixed. The next stage after anxiety seems to be the fatigue / depression stage. You are no longer anxious but you get tired / dissociated really easily due to your vestibular system dealing with everything moving. You’ll also not feel as mentally switched on, and you’ll often feel depression for no reason as you begin to accept the dizziness as a permanent part of your life. This is sort of where I’m moving into right now. This stage tends to very gradually go away on a month-by-month basis until eventually you stop noticing the vertigo at all.

Last attack this final stage lasted about 3 years, with the first two stages taking 2 years to get past. This time around I seem to be moving into the third stage after about 5-6 months. I’m hoping this means I can get through the third stage faster as well this time around.

Sorry for the long winded post, just wanted to share the things that helped me. I firmly believe these conditions can be fought, and all the expert vertigo doctors I’ve spoken to have told me the same thing. It can take a LONG time, but this is a condition almost everyone recovers from eventually. In the meantime, you can fight the anxiety and get your life back.


Post of the frickin' month!
#17

That is a really excellent description of the stages. I distinctly remember the first 3 months as “going to die” phase. And yes, ambulance came to my house once and yes went to the ER once. I also remember feeling death all around me, any time I saw elderly people walking with a cane or someone in a wheelchair I just had this awful sense of dread and death all around me. Like death was closing in on me too and I probably only had another few months or a year to live.

I think I’d add one more stage after initial stage where you analyze your life and figure out how to cope longer term, which I guess is sort of an acceptance stage. Yes, CBT, mindfullness, exercise are all helpful. But there is something to be said for minimizing the things on your plate for a while.


#18

Am I allowed to laugh? :grimacing: (I think a good sense of humour is important) Hope no offence caused, but I found that rather funny because it rang so true :slight_smile: It’s funny partly because at the time this is how you feel, but looking back it’s so silly (yet at the same time so understandable).

Sorry, I had to let out a snigger.

These things are so serious, yet so bizarre and almost ridiculous.

I did this! This is a stage too!

I hope everyone can laugh at this affliction at some stage (that must be yet another stage, i’m clearly at that stage now!) in their journey.

Please, don’t apologise. That’s the best post we’ve had in months!


#19

One of the better posts I have read in recent times. @nathan love your “never say die” attitude. The perfect pep talk I needed today.
@turnitaround, great job pinning it down for post-of-the-month so folks don’t miss this.


#20

Firstly let me just say @Nathan this was by far the most accurate despeciption of my life to a tee ! I have highlighted the above , as it interested me can I ask where you found this information ? Also I seem daily similar to you had 2 mav crashes in my life one at 13 the other 19 and this most recent one at 29 so seems we’re very similar . I agree deep down I remeber feeling sooo off for years age 13 I think you adapt better however the crash wasn’t as bad . But so much of what you said about the 3 stages is sooo accurate . I agree drugs or no drugs I do believe the body heals and without brain damage I believe everyone’s
Brain will eventually return to normal . I do think some meds may make that journey more bearable but the drugs don’t fix the issue time does. Anway thank you for your post it’s really helped me . I’m 11 months in to my crash and prob at the second. Stage or maybe the 3rd but ur right going about ur life is the best thing to do. However walking in busy places for me is one thing I’m yet to get over the anxiety I get so spaced and out and my eyes can’t keep up so it’s amazing you can now run outside :slight_smile: