Help with swaying and dizziness .

Hi Smitty

Sounds like we all have a similar thing. I've had mine 3 months. I'm having a CT scan on Saturday but not holding out much hope.

I feel so unwell some days especially as I have anxiety.

Hang on in there. One day someone will have an answer.

Hi Helen 

just seeing how you doing ? Did you get the scan .

I thought I was improving I had acpuncture about 2 weeks ago with my normal person and day after I only felt the swaying if tired. That lasted a week with really mild symptoms it never totally went . HOWEVER last Friday just out of blue it came back and has got worse again ever since . GP saying it just time .  I getting really low over it now and more anxious . 

Do do you find anything makes it worse or better . 

I find tiredness makes it worse . Do you have low iron too

ellie 

 

Hi

how you doing ? I not so good. See my response to Helen . 

How one did you get to see ENT , my doctor not said that at all.

Was scan ok ?

ELLIE 

Hi . Elliejane

I'm off to the doctors today so hopefully get scan and blood results. Still not had ENT appointment yet.

My symptoms are about the same. Have started on vitamin B complex so hope that will help soon. I had 3 acupuncture sessions which definitely helps with anxiety but it's so expensive so may have to stop those. I do feel worse when I try and do anything like housework or if I get stressed it makes the swaying worse. Yes I agree when I'm tired it's worse too and some days I get a horrible headache with it too. The only way to describe how I feel most days is as if I'm recovering from a very bad virus. No energy, hot and cold sweats and general fatigue. Can't go back to work yet but I have to find a cure as I can't afford to be off any longer.

How is it with you? Is the anxiety a big problem for you as I definitely feel worse when I get anxious.

Hi

Let me know how you get on at the doctor. Are you based in the UK?

do you feel like you are on a boat as well and swaying or like you walking on a trampoline

How long have you been off work? I still managing to work but it not great.

Yes I struggle with anxiety but I have done before this as well.  It so horrible. I feel like crying just now. I was so hoping it was getting better last week but no....  

Hi I've just got back from the doctors. CT scan all clear thank goodness. Blood test showed nothing so back to square one! Still no appt for ENT as our hospital is so busy. We are based on the Isle of Wight. Too many people and not enough doctors so always months to wait for a hospital appt. The doctor said it was a waiting game. I got very upset as I've been off work a month now and have been given another med cert for a month. Wishope I could go back to work as I can't afford to live on sick pay.

I feel generally unwell all round which exhausts me and I try and do little bits around the home but it makes my head worse and then I get the boat feeling and a headache. Don't think I've ever felt so unwell without a proper diagnosis!!!. Just keep living in hope I will wake up one day and feel normal.

I'm glad your managing to work it must help just having normality. I feel like a prisoner at home as I haven't the energy to go out.

Here's hoping for some better days.

Hi

What did doctor think it is ? Labyrinthis? I totally understand why you are upset .

I have pressure in both ears today and nose. I sure it must all be connected to sinus and ears too. 

I going to see my GP too tomorrow and try to get ENT referral . Last time she said we are a long way off that yet. I not had anything apart from bloods which showed low ferritin but I had that before with no swaying .

I do struggle at work . I use a computer all day .

Ellie 

 

The doctor suggested labrynthitis but won't commit until I've seen ENT specialist which will take weeks.

Yours could be the same or it could be Sinusitis. They're very similar . Did you have yours eyes go funny and felt like there were spinning? I hope for your sake Ellie that it is sinusitis as that's easier to cure!! Definamely ask for ENT referrally so you can have confirmation. It must be hard working on a computer all day. Good luck 😊

Yes most of the time

Hello you should look up mal de barqment syndrom. I have been searching to find anything on my symptoms and there's something called pppv that matches exactly..pppv and mal de barq are almost the same except for the feeling better when in a car or moving. Mines the opposite. My eyes bother me when driving amd don't feel clear and almost like they want to do what they want. But people with mal feel better in motion. I've seen ENT had CT mri blood and all have come clear. I changed docs and got referred to a dizzy clinic bear me where they specialize in this stuff. Change doctors if your not getting help!

Just read your previous msg, all my inbox msgs were sent to spam for some reason!

I had a good week last week, and now it's coming back. The symptoms never really went away but we're tolerable. Now my anxiety is getting worse. Yesterday was bad. I have a heavy chest all the time now and don't sleep well anymore. I asked my doc to prescribe me an anti anxiety pill just so I have if needed. I have t taken any yet, no really a pill fan. I also have something called SERC. It was a pill that was prescribed to me in the beginning when I was told labrynthis

. It's support to help woth dizzyness. I take only when I feel really tippy. I never get dizzy, just swaying and off balance.

I've just learned to take the good days with the bad. I am a.house cleaner and sometimes feel really crappy, but find I'm worse when I sit and do nothing . Inthink about it too much....ugh...your mind is a super powerful thing, and as hard as it is, try and go out for a few hrs woth friends or something, amd see if you notice it as much...I wake up not feeling well almost everyday, but pick and choose what I'm going to do. I'm forunate enough where I van choose hrs as they are my clients. I remeber saying to my boyfriend when I first got this in march, that I don't know how people with full time jobs can work with this crap. Super debilitating...how long have you had this?

Hi

thanks for replying . I had actually been on a boat about 4 days before this all started but I do that lots and only get the swaying the day after, plus this time I got it day after but then nothing until 3 days later . It was after a cold and cough so I thinking it connected to that .  I feeling sinus pain and ear pressure too. 

I had this 2 mths now .

I suffer from health anxiety already 😩 

I have my doctor tomorrow. Are you in uk ? I might go private if this carries on to see ENT

ellie 

 

I will look into that syndrome. I've seen 3 different doctors but all say the same thing. Wait til I've seen ENT doctor. Trouble is I can't afford to be off work much longer. It is good to know we are not alone in this. Amazing how they can cure millions of ailments but this one is such a grey area !!

Oh...yes it's all terrible...you'd think they would have a disgnosis for this sorta thing by now since so many people complain of the same symptoms. I live in ontario canada. Free health care, but definatly not the greastest. Certainly have to find the right doc and be proactive because it is free.

I waited for an ENT also having high hopes actually. And he was the worst of all. He did the same testing as my MD. Was very upset after leaving. I am going to see another on at a dizzy clinic. Not sure of you have those around you? I will fill everyone in on what the outcome is. It's not till July though. Is there a cancellation list at the offices that you have apts for? I called and got on all the lists for my apts.

We don't have a dizzy clinic here. The Isle of Wight is terrible for waiting lists. We have only one hospital and no cancellation lists as no one cancels because they wait so long in the first place. Although everything is free on the National Health Service it's a dreadful service due to lack of funding.

Well good luck with the dizzy clinic.

Hi 

not sure how to reply to both of you in same box ! 

Update woke up this am very congested in nose which eased once I got up. 

Ears pressure and bit sore and still swaying like on a boat .

Had my appointment with GP. So told her how 2 weeks ago I started to feel better but it only lasted 5 days then symptoms came back as bad . She think it either another virus triggered the labyrinthis or it sinusitis . Said symptoms are similar . Anyway she debated trying an antibiotic but because I had no fever , discharge did not. She prescribed a steroid nose spray. I had it 3/4 years ago when I had the joy of ETD for 9 mths . 

I asked about ENT referral so that will be next thing . 

There is a balance clinic too it is private but she said she would rather I saw a ear specialist first . 

So so feel it happier that not just dismissed to say it will take time to go. 

How are you all today 

Ellie 

Hi Ellie Jane

Glad your doctor is going to refer you to ENT at last.

Woke up with cracking headache and full ears but I'm going to carry on at home . We are selling our property so I've got to keep it clean and tidy. Have actually Sold the house but buyers want to visit today to measure up etc. Not a good time to sell our house but at least it went quickly.

My head is swaying now. I'm sure it gets worse with physical exertion as when I bend etc my ears feel like they will explode.

The doctor prescribed me betahistine tablets or Serc but I'm not sure I want to take them as it might hinder the recovery process. Mind you I guess I can't feel any worse ha ha.

Hope you have a better day and pleased your doctor is listening at last.

I take SERC too but only when needed. It was 3 times a day for me at 16mg. But in was only taking 2...helped a bit. I'm not sure if they help our kind of "dizzyness" as it's swaying and not spinning. My aunt has menieres disease which she takes SERC for and they work for her. But she gets the spinning vertigo bad.

Yes I would wait for the ENT if it will save you some money. It's sounds like sinusitis to me. But those nose sprays, if taken more than a few days can make symptoms worse too! Is it allergy season wjere you are too? I tried a few allergy pills, but I get tired from them and don't notices any relief.

Think I may give them a go as my head is really weird today and my headache is pounding. Even if they help with the fullness in my ears it may be of some relief.

Hi Smitty and  Helen

just checking in to see how you both are this week?

Did you try the SERC tablets? Any update on appointments or anything.

I am much the same. I going back to my GP on Friday to get the referral hopefully to ENT. I have private health insurance via my work so hoping it wont be ages to wait.   Need to phone today to check it is covered.  

Do any of you find that if you get distracted on something then  you dont notice it as much ? My son has a worry about somethign on Wed night so I was dealing a lot with that and find I never noticed my swaying etc as much but then it came back once I resolved his issue. Other times it gets worse if I panic

Another question is that there is so many folk posting on here with similar issues but a lot have not come back to see what staus is now. Do you think that means they got better or just still suffering on. I wish we could contact some to see what happened in the end. Has anyone looked at this site ?

http://www.labyrinthitis.org.uk

Not sure if I allowed to post links so remove if not

Smitty89

Do you have a diagnosis?

Anyway hope you feeling bit better

Ellie  

Hello, no diagnosis yet. I am dealing woth another symptom though. Lower belly pain. Wondering if it's a cyst. Had pain for about 2 weeks now so might head to emerge this morn. I have an apt booked for June 20 bit don't think I can wait that long. It can cause dizzyness too. Ugh. I don't have my dizzy clinic booked until July so won't kow too much until then. Yes, I notices when kept busy I don't notice the swaying as much. It's more my eyes that bug me everyday. The nystagmus feeling. And fatigue and jyst overall not feeling well.

Hi ellie

I tried the sercs and they do help but I'm not going to take them much longer as they stop the healing process.

Have an ENT appt in November. Ridiculous having to wait so long. I'm still getting dreadful headaches mainly at the end of the day but it always start with a ringing in my ear then the fullness and then the headache.

I'm coping better but I had 4 sessions of acupuncture for my anxiety which definitely helped. The dizzyness is worse when I'm anxious.

Having the odd good day but still not well enough for work yet as I'm so weak and washed out.

Good luck with an ENT appoinrment and fingers crossed for some answers.

Hi both

Just wondering how you are both doing ?

I had a better spell for again about a week like last time .It still never totally went but was totally ok then out of blue it comes back .

I still feel like I on a boat or bouncy castle at times . 

I just don’t know it def worse if tired .

I have my ent appointment on 11 July as going private otherwise it months .

How you both getting on ? 

Ellie 

Hello, been doing a bit better. My eyes seem to be my biggest issue

I feel like they all the sudden vibrate or just arnt clear. The swaying g came back last week because I was taking a strong antibiotic for a kidney infection. When it rains it pours. I have my dizzy clinic apt July 18 so hopefully they'll have some answers.. taking my kids away for canada day weekend coming up, and sleeping in a tent, so we will see how this goes....I hope your apt goes well!

Hi elliejane

Not been too good lately. Lots of headaches and swaying. My ear is ringing louder than usual and painful.

Glad you have your ENT appt. Mine is November. I'm trying to borrow money to go private. Let us know how you get on. Reading some other posts it seems even ENT specialists don't know what's going on but hope you get some answers.

I'm still not at work yet so struggling financially too. It's the most horrible illness isn't it.

Good luck and take care.

I am also in Ontario.   Isn't it a joke having to wait so long for an appt with an ENT  or neuro?

I also have serc, but had not started taking it because I have just started having vestular physio therapy.

I was told that Serc need to be taken every day to get the full impact of it.

A couple of years ago, I had an appt at a dizzy clinic  (in Scarborough). [u]It did not really give me an answers.

I understand that swaying feeling you have.  I feel this all day too.  I am also being treated for BPPV. Just wondered if you have checked into that.    My vertigo is better, but it just leaves me with a terrible off balance feeling and the swaying.       Also I have this weird thing where I will be sitting or standing, and I get this quick jerk to my right,,,,So weird[/u]

 

Hello! My ENT apt was about a month or so, and the neuro was 4 months. I have a neuro apt today that I had to cancel but it was for a nerve conduction yest for issues with my neck. I dont like the guy at all, aND my neck is better. My swaying has slowed right down. But my eyes bug me. Was told I had labrynthitis in march which is why the swaying occurred and nystagmus(eye flutter) I can't see my eyes moving, they just feel like the vibrate all the sudden, and it's never fulky clear. Some days are better than others. I live in innisfil, and the doctors in barrie are terrible. Currently trying to change my family doctor for someone more south. I was checked for bppv but I passed the halpike test so not it they said. I'm just hoping every time I get a cold, this doesn't come back. I can handle the swaying now because it's better, it's just my eyes.

Hi 

How are you today ? Your def sounds like ear related . Have your tried things like steam , Sudafed , seasick tablets . They prob won’t make any difference but maybe worth a go . 

I not as good today feel tired and swaying . I have had 2 spells when it has eased up a lot for about 6 days each time then just comes back 

Have you had ferritin checked ? Might contribute .

Could you see ent any earlier . Might be idea to ask for cancellation or private . I think it about £150 to see consultant but then have tests etc too . 

Is there any dizzy clinics near you ? 

What do you do for a job . Could you work reduced hours or is it not possible !

It horrible I feel for you . I just hoping it goes  away in time as quick as it appeared . Mine just appeared after a cold and bad cough ! 

Is there anything that makes it better or worse ?

Ellie 

Hi

Thanks for replying 

Glad to hear your swaying eased .  Not so good about eyes . That must be horrid . 

Are you getting anything to help them ?

It no fun 

Ellie 

Hi Helen 

How are you this week ?

I not good feeling more swaying now , pressure in nose and ears 

I see ent next week just hoping for a diagnosis soon and something to help 

How are you ?

Ellie 

Nope no help woth eyes yet. Found out I have a kidney stone on top of all this though...yay! Ugh. I go to the dizzy clinic in 2 weeks, and they deal with the eye stuff too, so hopefully I'll get some kind of answer then

Not going to get my hopes up though.

Sorry to hear your not feeling well, I hope the ENT can help somehow or send yoy to someone who can.

Hi Elie

Sorry to hear your not too good. I've had a crappy few days again too. Just constant full ears and head pain.

I'm glad you've got your ENT appt soon. I'm thinking of paying for mine as I can't wait til November.

Every day the symptoms are different but I'm exhausted.

Do you feel fatigued with it yourself. Will be interesting what the ENT person says about your symptoms. Do let us know.

Hope you feel better soon. I used to have good and bad days so make the most of the good ones.

Helen

Sorry posted my reply in wrong box hope you see it .  How you doing ? 

 

Hi

Just wondering how you are . How did you get on at dizzy clinic . You will see from my post to Helen I been told to go to dizzy clinic too . Was it ok ?

Hope you recovering ?

Ellie