Balance eyesight issue please help

Ears, nose and throat
1

Hi, I have some real issues and wondering if you could help me identify the cause... When looking at objects especially far away my eyes seem to be unable to fixate, like they are wobbling around the point of fixation...

My depth perception is also off, everything looks close up.

I don't stumble or have significant balance issues and no visible nystagmus. I do have dizziness, but can walk with my eyes shut and balance on one leg.

Physiotherapist said it is the cervical occular reflex in neck due to severe anxiety however I'm not sure it's just money grabbing. What could this be? I'm debilitated by it, trying to get all advice I can since doctors/ENT in UK are useless.

2

Can you stand with your eyes closed and your feet together, while standing on a foam surface?

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

3

Thanks for the reply.

I can stand on a cushion with eyes shut and legs together but slightly unstable.

I cannot do this at all with one leg only.

Are there any tests that do not need foam?

4

I would recommend seeing an opthamologist or neuro-opthamologist before any other specialist. They can tell you if there is a problem with your eyes.

5

Thank you. I did see an opthalmologist they said no problem with my eyes detectable with slit lamp etc.

I do suspect optic nerve problems because my vision is hazy, and a little dimmer and colours seem darker. An MRI said asymmetric optic nerve sheaths.

Colours are warmer through my right eye.

But I had a VISUAL EVOKED POTENTIAL and was told it was fine (although I'm awaiting a second opinion)

6

I was seen by two opthamologist who told me everything was fine but i knew that it wasn't. It was only until i saw the third opthamologists (who ran different tests) that a problem was found with my eyes. Definitely get that second or third opinion!

7

I saw six, they got upset with me hassling them whence why I don't trust they truly checked the VEP results...

I read if the nerve signals are slowed by nerve demyelination it could affect me fixing on an object.

Or it could be a vestibular problem...

All this started after a long period of stress, heavy smoking, and antidepressant withdrawal

8

Six.. that must be quite frustrating for you!

Like you, my symptoms started after a heavy period of stress and symptoms include not being able

to focus in the distance. I was diagnosed with accommodative esotrophia. The last

opthamologist did a test where they put cycloplegic drops in my eye and patched one of them up for half hour. The previous two opthamologist never ran this test and told me everything was fine.

Keep searching for an answer!

9

The foam was necessary in this case to focus on the vestibular (balance) system of the inner ear, and remove proprioception (feeling of position) as a factor.  Since you passed the above test, I doubt that the vestibular system is involved.  I would visit an ophthalmologist first, and they will then guide you further.  If you pass ophthalmology, then neurology will probably be the next referral.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

 

10

That's interesting - I never knew about standing on a foam surface. As an elderly woman, I always include standing on one leg with my eyes closed as part of my daily exercise routine - mainly to ensure I can still do it! I can't risk this at the moment as I'm in the middle of a recurrence of a lifelong problem with BPPV, but hope to start again soon. Once I'm over the vertigo, I'll be interested to try this test on myself occasionally, to see how I'm doing.

No risk is involved, btw. When doing my regular balancing exercise I always position myself with a wall about 20cm behind me and with sturdy furniture within reach on either side.

11

Hi Random,

I can't comment on everything you've described but you do realise, don't you, that it's perfectly normal to see colours as warmer through one eye than the other? Just as it's normal to have a different level of vision in each eye.

I also think it might be worth giving the physio's suggestion a try, if it's not too expensive, as you do sound to me as if you might be suffering from a degree of anxiety as well.

12

Thanks I'm so desperate to get better I have fluctuating hearing loss too..

I will try the physio in fact I'll try anything. My neck does hurt and is stiff. Thanks for your reply.

I just tried to cycle a bit, I can ride a bike OK, but vision not as 'fast' identifing obstacles etc. Turning my head at the extremes feels uncomfortable with balance.

If I can ride a bike is my vestibular system working ok? I can do it with eyes closed a little?

However after the bike ride i felt so dizzy I almost fell over, walking around as if drunk. This also happens after going for a walk. Everything is moving a lot.

I'm seriously debilitated by all this, I'm feeling suicidal over it... I wish my eyes would just stay still it's s 24/7 bobbing about I'm going insane.

Yeh the eye colours thing I agree, it's just I noticed the change recently. When I look into black or dark it's hazed like I've just come in from bright sunlight into dark. Colours seem darker than they used too.

Thanks for any help with this.

13

Hi Random,

I note from one of your posts that you've now seen six ophthalmologists. I fully accept that some specialists are more competent than others, but I really think you've covered all bases if you've seen six of them.

By all means see a neurologist if you haven't already. And I would reiterate that it won't do any harm to follow the physio's advice.

I also see from an earlier post that you've stopped taking antidepressants fairly recently. I'm assuming you did this by slow tapering and under medical supervision. Even if you did the withdrawal correctly, this could still be causing a lot of the symptoms you have. Many people have a lot of health problems after withdrawal from antidepressants, but these do eventually clear up. Have you googled withdrawal/discontinuation symptoms for the medication you were taking?

And of course, withdrawal from most antidepressants can cause extreme anxiety.

To summarise, I'd advise you to see a neurologist if you haven't already (more to reassure yourself than anything else) and consider doing that course of physio even while you're waiting for the neuro appointment. If the neurologist doesn't find anything wrong either, then perhaps it's time to start addressing your anxiety. CBT can be very helpful. I don't want to be unsympathetic, but your constant focussing on different aspects of your symptoms does sound a little like health anxiety to me.

14

Hi lily,

I appreciate what your saying, it was anxiety that got me in this hell.

The problem is this is a long story. I didn't recently come off antidepressants it was a few months ago. I was collapsing and having eyesight hearing and balance issues ALL after serotonin poisoning and heavy smoking... I was forced to take antidepressants, antipsychotics and benzodiazipans in may last year after having serotonin syndrome already, which made me suicidal, and chain smoke etc.

Now I'm left with numerous serious health issues, like this. Also double vision type perception, hearing loss and tinnitus.

I'm trying to solve these... Ivd been told it's anxiety so many times but know my body. I've researched endlessly into causes.

I can't keep my eyes fixed on an object and this is hell for me, I'm seriously considering the S word too. I wish there were answers or solutions_ I have had my health irreversibly damaged by those who were meant to care for my health and wellness ..

15

I'm so sorry to hear your story, Random. I totally agree about the indiscriminate use of psychotropic drugs. A friend of mine, who was suffering from mild vascular dementia, was put straight  on maximum dose of a powerful antipsychotic, without any build-up, when she became slightly aggressive. She was 79 and had a BMI of 17 at the time. This vigorous (slightly too vigorous!) lady immediately turned into a catatonic husk, and was covered in bedsores within three days. The drug was abruptly withdrawn after two weeks, relieving the extrapyramidal symptoms but sending her into an irreversible psychosis. She was then given massive doses of a whole cocktail of sedatives, antidepressants and antipsychotics and died in misery 18 months later. As her main care-giver, I still grieve for her and feel I should have done more to prevent this happening.

But you are younger than my friend and won't suffer the same fate. Please bear in mind that withdrawal from antidepressants, antipsychotics and especially benzos can take several years, not just a few months.

Everything you're describing could easily be attributed to drug withdrawal and anxiety. You've seen six ophthalmologists so there clearly isn't a serious problem there. Go with the physio's advice. Neck tension is a common result of anxiety and can cause many of the symptoms you describe. See a neurologist to rule out anything else and to reassure you. And then try to address your health anxiety before it wrecks your life.

16

Hi Lily, thanks again.

The drugs certainly are evil and I sympathise with you there, I'm sorry.

I tell you how it happened and see if you can decipher exactly what my prognosis is;

Took sertraline and St Johns wort together by accident. Had serotonin syndrome.

Then went for help from the psychiatrists and they assumed I was crazy. They forced me to take remeron, seroquel, and benzos for about 3 months.

Smoked heavily during this time due to severe anxiety/depression of being tortured.

Had eyesight/hearing/nerve issues I thought were drug side effects

Developed weakness in limbs.

Severe headaches

Amnesia and altered mental state

Collapsing

Totally ignored by nurses/doctors

I now have have;

hearing loss

Tinnitus

Eyes seem that they can't stay still/fixed on an object I'm looking at

Eyes have hazy, things look odd, dim

Weakness/heaviness in limbs

Dizziness balance problems

I could deal with any of these but the eye moving is just impossible...

It's been 5 months since the ordeal...surely since I only took the drugs for such a short time the side effects would be long gone??

And how can anxiety cause eyes to wobble?? Anxiety makes you more alert and vision blurring rather than shaking??

This is a 24/7 thing too

I just feel like sentenced to death, I can't function with the eye issue

17

So sorry to hear about all this, Random.

I'm afraid this could still be the effect of the drugs you were on, or withdrawal from them. Have you tried to find forums where people who've been on these drugs share their experiences and discuss how they dealt with the problems? I believe there are some boards on this site that discuss this kind of thing, but the only one I've ever been on was the olanzapine board, when I was looking for help for my friend. Sometimes people who've been through it themselves know far more than the doctors.

You were really lucky with that sertraline/St. John's wort episode! A lot of people think herbal remedies are harmless, without realising that the more effective ones (like SJW) contain similar compounds to synthetic medications.

You really do need to see an ENT doctor about your tinnitus. It's not clear from your first post whether or not you've actually seen one or not. I do agree, though, that some of them can be pretty useless. The ENT specialist I saw earlier this week for my latest episode of severe vertigo refused even to discuss the subject in the 5-minute consultation! But I'm better placed, in being able to self-refer to a specialist vertigo centre (which I clearly should have done in the first place!) so don't worry about me.

I see, btw, that there's a British Tinnitus Association, which offers support. Maybe you should try them?

And you still don't say whether you've seen a neurologist. This would be helpful if you could try and get yourself referred.

You're not sentenced to death. I'm not saying all your troubles are down to anxiety, but it's obvious from the way you present in your post that your anxiety levels are very high at the moment - another effect of withdrawal from some of the meds you were on. Try not to worry too much. And try and see a neurologist, just to rule out any other possible causes.

18

Thank you for the reply. I just can't imagine this problem is anxiety or withdrawal related.it's been months and I was only on them for a short time... The problem started when I was withdrawing from remeron, however I was heavily smoking with the stress.

It's possible it could be CO poisoning...I've read about delayed neurological issues appearing after the poisoning stops..

When I cycle or walk I end up feeling sick and dizzy too, like it's a vestibular problem.

The eyes not keeping still is incredibly debilitating it's indescribable. It prevents me from appreciating art or a view, TV, film, I can do alright if I read text for some strange reason, but only close up..

I've a neurologist appointment in 3 weeks however I think it'll take proper investigations to find the eye issue...something i doubt I'll get since I've been stigmatised as this all being anxiety due to the mental health issue that started all this.

I really do think ending it is a rational solution, I cannot work with this, and being on disability alone unable to see properly is a scenario I couldn't bear... I was a successful career engineer wealthy before all this and I'm only 39 and single... Im looking at many years of misery, especially since I loved life so much this is impossible to swallow...

19

Random, when you go to see the neurologist, try and stay as calm as possible. And whatever you do, don't start suggesting diagnoses. As a former nurse, I know that some doctors automatically dismiss a patient who's overly anxious - and especially those who suggest diagnoses - without properly considering their symptoms. I know this seems unfair, but doctors don't have much time for their consultations, especially in the UK, and anxiety is an easy catch-all diagnosis.

Make a list of your symptoms before you go to the appointment. Stay as calm as you possibly can during the consultation. Try to avoid mentioning suicidal ideology. I know that logically this should make a doctor take your symptoms more seriously, but sadly it can have the reverse result.

I don't agree that just a few weeks on psychotropic drugs couldn't have caused your symptoms. Some of these drugs are incredibly aggressive. After just two weeks on the antipsychotic risperidone and its subsequent withdrawal, my friend went from being a mildly confused dementia sufferer who was still able to go out and get shopping for the other residents in her home, to a severe psychotic who made several serious attempts on the lives of the staff and other residents. Never underestimate the effects, mental and physical, these drugs can have on certain individuals. I'm not saying they don't have their uses. Many people are helped to live normal lives by psychotropic medications, but others have been badly affected.

I can see where you're coming from with the CO poisoning theory, given that you smoked heavily for a short period. However, I don't think you would have inhaled enough CO to cause any permanent neurological effects. It might, though, be a good idea to tell the neurologist how many you were smoking, and for how long - but preferably without bringing up the CO poisoning hypothesis. And of course, if you knew you had any malfunctioning gas or solid fuel devices in your home in the relevant period, you should mention that too. (I'm assuming you've had everything checked?)

I'm sure you're not looking at many years of misery, and that either a treatable cause will be found or your symptoms will eventually subside on their own. We all go through very bad patches in our lives, but we eventually come through them.

20

There's nothing I want more than my eyes to stay still... Multiple doctors saying it's anxiety but I know it isn't.

It doesn't matter if I'm relaxed or SCREAMING I can't get my eyes to stay fixated steadily on an object. I have slight oscillopsia, so fear the worst... I can't handle that this is likely for life, I'm debilitated by it. After 5 months how could it get better?

I will take note on your tips for the neurologist, however I'm not sure what he could actually do?? Medication to slow the wobbles?

I'm an engineer and this issue is career destroying.

If I had severe CO poisoning, could I still be being poisoned by high levels in my tissues? Could I give blood to try and clear it?

The ENT was useless yes. So far I've had;

-vestibular assessment, no nystagmus **visible** thinks it's cervio occular issue due to stiff neck

-MRI showing asymmetric optic nerve sheaths

-hair sample showing slow metabolism and slight excess free radicals and slightly bad toxic ratios

-hearing test showing high frequency loss

I feel like a write off...just want my health back.