Hi all-ive been having dizzy spells the last week,but today ive woken up and i just cant get my balance and vision right...

[emmaj]

Im waiting for a gp to call back,the only wayi can describe it is like someone has spun me round and my eyes feel like pressure in them,and they are blurredn i feel really off balance,anyone had this?

[jessielou]

Hi hon,

Yes partly to do with my ears, which I believe is related to the Hughes. My blood pressure is also very low, which causes me to feel dizzy too. My hubby ( that feels so lovely to write, only married last week after years together) anyway my hubby nicknamed me wobbly bob, as my balance can be dreadful at times.

These symptoms i also get pre migraine, which I don't get to often since the clexane injections.

I think your doctors is a definite, if you feel worse in the meantime, I would go to A n E to get checked..

I hope you feel better soon hon.

Take care gentle hugs love Sheena xxxxx

[packerfan]

this has been happening to me for the last couple years. I have complained to the doctors yet they do nothing. I am thinking about seeking medical treatment elsewhere and breaking away from my current doctors. the dizziness usually passes within a hour or so but then returns. this happens every day, I guess I am getting use to it

[emmaj]

Just back from gp and its the muscles in my head,the balance mechanism in the brain affected by hughes or a stroke or tia, she gave me the option of a&e or trying antihistamine based sedative that crosses the brain to try and sort out the balance problems so ive gone for the latter-hospital is a waste of time i think!! How on earth im going to get through tomorrow with a two year old and school runs i have no idea!I know im in a 'relapse' at the mo as ive not slept for 4 weeks properly,pain ruined my holiday,and the twitching.spasming is worse. Thanks all for your help xx

[Hidden in reply to emmaj]

Hi EmmaJ

I have had two bad bouts of labyrinthitis since my symptoms flared up 18 months ago. Prof Hughes thinks it's all linked to the APS. The first time I had it I'm afraidit lasted for weeks. The telling sihn is does the room spin when you turn over in bed? I was given travel sickness tablets but they made me really spaced out so couldn't continue. The Epley manoeuvre was my saviour! I was referred to the ENT team at my local hospital and the doctor managed to trigger an attack (he was very pleased with himself! ) so gave me an Epley manoeuvre there and then. I hope you can get some relief soon.

[overnighthearingloss]

I had that really badly when I lost my hearing. Not saying that its going to happen to you but both the auditory nerve and vestibular nerve (balance) are close together. Whatever caused my loss seemed to strike that area of my head.

At the time I felt a sensation of fullness around the ear. I have never had a definite answer to what happened but I personally believe it may have been a bleed in the affected area. Others suggest that clots in the tiny blood vessels can cause the same.

I didnt find any of the meds prescribed for balance helped at all, (for me anyway). What seemed to help was the trauma diminishing over time. It did continue for a while so you will need to take things easy.

Because your balance is all out of sync, everything else feels strange. I imagine you are extremely tired due to the extra concentration for the simplest of tasks.

Hopefully it will reset for you. But whilst it is fresh in your mind try to note what changes there may have been leading up to it. Also if you havent had it checked then get your INR level checked again.

[emmaj in reply to overnighthearingloss]

im sorry for your hearing loss that must be awful, i do get intermittent problems with hearing i hope your adapting well x

[Manofmendip]

Hi Emmaj

I was sent by Prof Hughes to see his colleague Peter Savundra at The Portland Hospital in London. Peter is a Consultant Audiovestibular Physician and he explained in great detail how the ears and therefore balance is affected in APS patients.

Please do try to get an appointment with him. I saw him as a private patient but I don't know if he sees patients on the NHS.

Best wishes.

Dave xx

[emmaj]

Many thanks, the tablets arent really helping,i still feel drunk,walkingin to things and manage to smash my sugar canister this morning!! Its the blurring of the eyes thats scaring me and the gp says because of that its definately not ear problems, i do have a lot of balance problems,made worse by damage to the brain in the parietal lobe but we tend to adapt and get used to a lot of weird symptoms,but it would be silly not to get new symptoms checked out and ask the question on here as to whether anyone else gets them,just for reassurrace really-i dont know what we'd do without this site-thank you all fortakinf he time xx

[overnighthearingloss in reply to emmaj]

I remember the feeling. Like walking on a ship in a rough storm. I even had the room spinning when I was laying down.

I cant remember how long it took but things did improve. I still have the odd moment when i am tired or feeling rough but the brain can reset.

Do get your INR checked as some have said it can be caused by a low INR.

Just for safety sake at least.You will need to get someone to take you or arrange transport as crossing roads may be a step too far for you right now.

Take it easy and rest lots. Also ensure that you are drinking enough water as sometimes being dehydrated can cause issues.

Re hearing - I cant tell where sounds are coming from now. You need 2 good ears for that. So my life has taken on an air of mystery. A bit like you right now with your world spinning. I hope it all settles soon. Rest, rest, and more rest. And save the best china for another day.

[overnighthearingloss]

Because your horizon is all weird at the moment that will also have some affect on the eyes as they are not able to focus as they usually do. I hope that is what is causing the eye issues. I think my focus was affected at the time.

[emmaj]

Im off to london in two wks for tests/mri's so ill make them aware of whats gone on with this episode,i just hope it passes and isnt some new development that stays!!

[overnighthearingloss]

Have you had your INR checked yet. You really should.

When I had it it felt like a could feel a fullness as if there was more fluid or a bleed. But although I cant really remember perfectly, I think when my INR was eventually checked it was low. Mind you that was quite a bit later in my case as I didnt act.

You should get checked in case a high or low INR is contributing to your symptoms.

It wont necessarily stay permanently. But you may have recurrences, if whatever circumstances that led to this episode, happen again. That's why I suggested you make a note of what happened on the lead up to this. You will forget details over time, and the only way you can be sure is to look back on a written record.

Food and drink consumed, activity levels, colds or illnesses, medications leading up to the event...

All of these may have played a part

I had an MRI after a month. It was unable to detect the cause. All it can do after an extended period is detect if there is anything ongoing.

The brain makes compensations over time, even if there is damage. Provided you dont over extend yourself or be pushed into over extending yourself, you will probably find a way to move past this.

Is there anyone else that can help with the kids?

[emmaj in reply to overnighthearingloss]

il try to get out and have my inr checked thanks,my husband is working from home tomorrow so hell be able to help a bit,then the w.end,and my little one is at his nans til wed next wk so ive just got toget throgh nxt wk and then its londonm ill write a little report tonight so i can take it. My gp called tonight to heck on me,and my speech has improved so at least there is some improvement today x

[sangje]

I also have had this - first diagnosed as labyrinthitis but then a balance consultant in audiology said it is very common in hughes - No drugs made much difference to me- just had to wait for it to go away - which it did after about a week- with just rest and patience.The worst thing I found is that it can be very frightening at first and i am told this can be because of the proximity of the inner eat to the limbic system which is the basis of our primitive flight or fight part of the brain. I found once i boned up on what was happening i was more relaxed and let it take its course. Of course it is also so frustrating as it can really interrupt normal life. I have had recurrances but they have luckily been short lived. So relax if you can - All the best sanj x

[emmaj in reply to sangje]

Thanks-not that id wishit on anyone else its reassuring to know others have had it x

[APSmum]

Hi, I had those same symptoms (blurred vision/trouble focusing and balance issues) after each of my TIAs/Stroke and it took a few weeks for symptoms to settle down afterwards. I wasn't aware they were actually a TIA/Stroke until I was given an MRI. I have also had minor relapses when my INR gets very low. It is good you are going to have tests/mri in a few weeks to get checked out.

[Salty]

Agree with APSmum. You should get a brain MRI to be sure this isn't a stoke. If it is, your therapy may need to be changed. For example, if you are on warfarin alone, they may want to add aspirin or clodpidogrel, increase your goal INR, etc.

[Lure2]

Hi, Agree with APSmum and also with Dave (above). I have had these symtoms It was microclots (TIAs /ministroke) Also my vision disappeared on one eye for a couple of minutes.

Disappeared after warfarin. Important to keep a stable INR and not too low! I selftest to know my INR is in range.

Kerstin

[Lure2]

Sorry. I mean that all the symtoms disappeared after warfarin (not the vision ). Kerstin

[emmaj]

TThank you all,my speech is better and the tablets have helped and a relatively restful day yesterday got me through the worst i think,its only intermittent off balance now and just eyes arent quite right rather than completely out of focus,thank goodness xx

[DataOdyssey]

I had a bout of unusually severe dizziness that affected badly about 6 weeks ago. It manifests itself when I turn corners, turn around on the spot or turn my head normally (never mind suddenly!). I'm calling this unusual phenomenon "Spatial Disorientation" for want of a proper medical name. I've never had it this badly before - for such an extended length of time. Added to this, I lost my sense of taste and smell about the same time - usually a sure sign that I've had a TIA - and yes, I did have one around the same time. Facial numbness and all that.

I went to see my GP, but was given a 10 day wait. Yes, my GP's Surgery knows that I am an "at risk" patient - but standards seemed to have dropped to the point where I no longer count. I may have had a TIA, Stroke or something equally dangerous, but I can wait 10 days. That's what passes for healthcare in my neighbourhood now. So I went to a walk in clinic about 1.5 miles away (I walked - slowly) and was told by the Consultant there that I likely had an inner ear infection because I had the FLU. My ears didn't hurt at all and I definitely didn't have the FLU. Believe me, I would know. However, I did have a slight migraine like headache. She admitted that she couldn't find proof of any ear infection but insisted that was what it was. The next day (10th day of my "Spatial Disorientation") the symptoms mysteriously stopped of their own accord. My sense of taste and smell have yet to return, however, both my feet started swelling horribly - as if they were going to explode, despite wearing compression stockings. A day after that, I found that my INR had inexplicably dropped to 1.8 - the target is 3.0....!!

Well, the peculiar dizziness returned with a vengeance without warning a week ago while I was at work. I wasn't stressed or anything. I was just walking along quite relaxed and went round a corner and everything spun for a second or two. And it hasn't stopped happening since. My last INR reading was 3.5 - I'm not sure what it might be now. I went to see my GP the next day and was given an appointment for 8 days later. That's this Wednesday. I don't know how much longer I can keep going like this - especially as I'm holding down a full time job at the moment. I empathise with your situation Emmaj. Take care.