Vestibular issues ..

[Swishy]

Looking for sharing about vestibular issues...As I approach my 1 year mark, the end of April, I am reluctantly feeling that my vestibular issue that leaves me feeling "Swishy" is permanent.  I feel like I am moving when standing, even when I am not.  I also have ringing in one ear all since my NASH...I did all the PT I was allowed and given the eye and head exercises to help and it did some as I can walk unaided and have returned to work...But the motion sensation persists and I do think perhaps increases my chance of a fall, if not now then in the future as I get older.  This is the thing that reminds me constantly of what happened to me...Any advice on living with it, putting it on a back burner so to speak...thank you

[Super Mario]

I think that I have suggested before that a triwalker or rollator would be a safer option for you when walking. 

I realise that you may not like the idea but which is better, staying on your feet or falling and possibly hurting yourself?

14 years on and I am still "swishy", without my frame I would have little or no independence.

[Swishy]

Thanks Super Mario...I guess being honest I am not there yet...I get around carefully...but always swishy...even swishy standing still...I guess I am hoping I will read that someone found it lessened after time...  thanks for the straight talk... I may not be there yet but as I explore and resolve this your words will be present..

 

[Kiwi Grunter]

Hi Swishy, I’m same as you coming up 11 months next after PMSAH. I’ve had a permanent hangover, noise sensitivity and ringing in ears that haven’t improved.

 

I’ve always been able to walk, I was the only walking patient in my neuro ward so I felt like a fraud. I’ve had no support from anyone except for family and friends.

Only yesterday after me making contact have I seen the local stroke support people. They were wrapped that I volunteered myself as support person for others when I feel right.

I’m a secondary school teacher who was also in charge of running the school’s student management system database and as my school has 2 farms and a recently installed robot to milk the dairy cows, was very involved in the running of that. I can’t do any of now although I am being hounded by an insurance company to get back to work. 

 

Anyhow i’d say what you are experiencing is pretty normal but unique. I still have to watch where my feet are going and have a strange surreal peripheral spaciness(Swishiness?)  The spiders that crawl over my scalp are weird too. Random headaches are a nuisance too. 

 

Dont worry about weirdness it sounds normal. Good luck Swishy relax and try and enjoy the journey. 

Grunter

[ClareM]

Hi

my ‘swishyness’ has faded over time. I am 3 years out and find my balance issues are much better, the only time I suffer now is when I am tired and that’s mentally tired not physically. 

 

You are still fairly early in recovery so give it time. 

Hope things improve 

 

Clare xx

[Daffodil]

Hey there swishy. I did have a lot of balance issues which I myself put down more to my shunt but it is probably bleed but coming from unable to stand or walk post bleed I graduated to a stick and gradually over time I have improved.  

 

I agree with Super Mario to an extent, you need to find things that give you security to move about confidently and safely and I think that also helps you practice walking more without worry. When i came out of hospital I couldn’t walk unaided so I had a mobility scooter for a while to get about . With daily exercise, better food I graduated to using a stick and like you I now walk unaided. BUT if I am going somewhere busy, if I am taking dogs out then I always take my stick and have one in the car just in case. 

 

You have to adapt your  pace but you will find and be comfortable and sense your new balance over time. No turning fast, taking a bit more time to do things and not multi tasking. I am  a skilled uni- tasker now ! 

 

My tinutus has never left it’s just lower pitch and I don’t  hear  it now so much , it’s just part of me. 

 

I now its not much comfort but is still early on for you and more regains to come. Today is my six year anniversary and what I can do today compared to then is amazing but that is the measure and yard stick I use as you can’t get back to what you were before. Even for those who manage physically to regain everything will have changed from their event.

 

Put measures to help you walk confidently, a prop, a comfort if you like so you worry less about falling and that may Help.

 

PS Grunter, oh the spiders, how I hated the spiders of the early years!! 

[Karen]

Hi Swishy ... love your user name and a great word to describe how it feels!

 

Yes, balance and eye issues were huge for me (I had a third nerve palsy to my eye which gives double vision) .... I still get the odd balance problem when I'm having a bad day or particularly tired and need to be a bit more dehyrdrated or just take it easy.

 

One size doesn't fit all with SAH recovery and at 12 months post SAH and returning to work, I would perhaps say, that you're doing pretty well, even if a bit "Swishy!"

 

I also had all of the vestibular issues and the head and eye exercises took me truly out of my comfort zone!

 

From my own experience, I believe that it's with time and regaining personal confidence, that nothing bad is going to happen ... Your brain kind of makes allowances for being a little wonky over time and it does get better and better. 

 

However, speaking personally, balance issues raised my comfort zone and hence my anxiety, which does nothing for your confidence or balance issues. Eventually, I went back to the Doc and was given meds for anxiety, which helped. I struggled for too many years and SAH fallout is still a learning curve, but the meds have helped.

 

A walking stick? ... I still have mine and it's a fold up one ... I don't know anyone that's happy to use one, but it's like a security blanket and you concentrate more on the fact as to where the stick is going, rather than the balance issues. 

 

Tinnitus? Yep, I have it .... Get some ear or head phones and put some music on ... I find that it helps with walking. xx

 

 

 

 

 

 

 

 

[Swishy]

Thank you for your support, advice and comfort...I did use a walker initially then a cane and then my PT felt I was good to go...thing is I don't appear how I feel..   perhaps good perhaps bad...I have gotten use to the feeling of being on a boat to a large degree...I read each one of the messages you wrote several times...so good getting advice from people who really know what I am talking about..

 

I guess I am lucky as I really have little to no anxiety about my issues I am really trying to get my head around the fact that I may have them permanently.   I do realize I have not even reached a year since it happened...and I am happy reading that people continue to improve..Again thank you all and I will keep reading......Regards Jean 

[jess]

Hi there I had terrible lightheadedness and jelly legs at the start then it went only coming occasionally but it has come back and I have had it everyday since last August not all day I am hoping I can get rid of it but Drs said oh it's just one of those things we will probably never find the cause xxx 

 

Hope things improve for you soon xxx 

[Winb143]

I think I need a stick as cannot walk far but also it lets others know "Hey I am dodgy on my pins" but they sometimes walk into me !!  

 

Was in Boots and the pharmacist told me to use olive oil drops and the echo has gone but not the buzzing but that I can live with xx

 

Hope all is well with you xx and keep calm when possible  xx

[Kiwi Grunter]

Hello Swishy,

I really love the term Swishy and am using it myself now. 

 

I was visited by an Occupational therapist employed by an insurance who has never dealt with a PMSAH case before.

 

Because of previous visit to an  Occupational Rehab Assessment specialist they are hell bent on thinking I have fatigue and tiredness. My wife and I disagree, are both really happy with my progress and know that my inability to do things at the same rate as before is do to my unresolved blood and the subsequent swishiness, headaches, ringing in ears , feeling like I’m walking on a moving ferry, outside world seeming surreal, noise sensitivity. It is very, very slowly improving.

 

I’m now about 80% right and the last 20% recovery is so slow it almost imperceptible. 

The OT want me to fill out a chart on how tired I feel, that I found almost impossible to do because sometimes I feel physically fine but have bad swishiness or a headache.

 

Because the insurance company want “figures to show progress” I’ve created a swishiness scale to rate how my head feels. 0-perfectly fine 3- moderate hangover 5-headache taking over 7-got to sleep it off if I can 8-take 2 panadiene 9-take 2 more 10-this is not good thinking about hospital.

 

I’ve been recording myself on this for 5 days now. Makes more sense to how I feel. 

 

I can’t believe that it’s OK to be in hospital with all of my head issues stopping me doing things and now 11 months later still having the same brain based problems, even though I’ve been told it’ll easily take a year for the blood to resolve, now they’re telling me I I’ve got a fatigue problem that needs an exercise programme at the gym. If I needed to go to a gym I would have gone myself. They won’t listen to my wife and I telling them about everything I’ve done in my own time.

 

Frustrating. 

I feel like screaming at them  but it’d hurt my head like sometimes when I walk it thumps in my head when my feet hit the ground. 

Eeeeek 

[Swishy]

Hi Kiwi,

I am there with you..Seems crazy almost 11 months out and still talking about the same feelings...I too experience fatigue mostly brain fatigue I would say...It slows me down in work on the computer when I will sign in repeatedly with the wrong pass word, realizing I need to have a water and sit for a bit...I like you method of scoring how you feel...as it is hard to access it...I too get the thumping in my head when I stand up....gives me a fright sometimes as this is how my thunderclap headache initiated but I am dealing and can quickly quiet my fears down...day by day I say and I judge by looking back a couple of months (at least) for improvement...

[Kiwi Grunter]

Hi everyone,

Thanks again for everyone’s support. It is with much relief I can say that by insisting that I know know my own mind and body and understand my issues that I have managed to convince the occupational therapist and exercise rehabilitation expert that I don’t actually need their help.

 

I’m not saying that I have a closed mind and blank refusing their expertise and as I have said to them I should’ve had this support the minute I was discharged from hospital and not left to my own devices to figure it all out myself. I have politely acknowledged their expertise and willingness to help without giving the impression that I’m a belligerent old fool. It’s a case of don’t call me I’ll call you. They have all admitted that i’m obviously not a couch potato and intelligent enough to have got through to here and pleased with my own progress. 

 

Yesterday I was left with some information about Pacing and Dealing with Head Injury which I could have written for them. It took them 11 months and 34 days to get it to me. 

Anyhow it is also by quoting what many of you have said in your communications, which none of these people have tried to discredit, that has also added credibility to my insistence that they’ve offered too little too late and I’m as well as I  can be. 

 

My GP was very good last visit and acknowledged he has seen progress and support that he wouldn’t insist that I do something that I’m not happy about even though he thought I might be fit from exercise programme. Looking forward to getting on my bike and dawdling down our local riverside paths before winter in NZ.

 

Also will mow the lawn for the first time in a year, I’ll try not have my tongue hanging out and make like I’m driving a tractor topping a paddock before the cows go in!!!!

Anyhow thanks again everyone and good luck with recoveries. 

[Daffodil]

KG, I won’t say well done as annoyed for you  but am pleased you got this sorted as  it is really poor  that the insurance team waited that Long to offer you any help and assistance by which time  you and your wife had figured out your own plan , maybe worth a suggestion to them that if they have a SAH client in future that they reach out earlier, you could help other NZ folk then . 

 

Good luck with getting on the bike. That was one of my greatest challenges balance wise. I can do it now but boy it took some practice , so much so I thought about getting a trike for a while ...may I just suggest you don’t cycle too close to the river the first few times . Also wear ear protectors whilst you mow the lawn, it will help. 

 

[Kiwi Grunter]

Hi Daffodil, 

Haha I will try to stay out of the river, biking with snorkel and fins has always been difficult???

I always wear ear protection while mowing too, usually with my favourite music or radio station playing. 

Actually haven’t done either yet but on my radar. ????