Help with swaying and dizziness .
Posted , 8 users are following.
Hi
i wonder if someone here can help me with some advice .
Here is my background
About 3/4 weeks ago I started with cold which developed in a bad cough that lasted a week. The day my cough finished I started to feel like I was on a boat . Like a swaying feeling. I just thought it would go away but it has not over 2 weeks later .
Main symptom is this swaying on a boat feeling , also if I move my arms lot like cleaning something it worse . It not bad lying down .
I also have headaches and what feels like pressure at times on face. Kinda like sinus pain. I have little to no congestion .
i went to see my GP last Thursdsy who said possible labyrinths although I do not have typical vertigo spinning or hearing issues .
She also did a blood test which showed low ferritin . I am always anaemic
She gave me a nose spray that might help if it sinus .
I not improving at all and feel worse prob over the week. It really getting me down
I am worried that it either something serious or that it won't go away .
anyone offer ideas or reassurance .
sorry
ellie
0 likes, 70 replies
Elliejane44
Posted
Hi all
How is everyone now ?
Saw ENT today So guy was really nice . I was 15 mins early so he took me right away. I was in over an hour . He was very thorough. I explained that it came on after a cold virus and told him all my symptoms and also about the sore cheek and nose head pain I get on and off . He asked loads of questions . I said I had Eustachian tube dysfunction 4 years ago for about 9 mths and had a ct scan done of sinus then. He brought up my old scan and said yes no issues with sinus . He then wanted to do a nasal endoscopy so I had that done. Was not that fine . I knew that would be ok. He said if that clear it unlikely to be chronic sinusitis and fact it comes and goes probably rules that out.
So then he did more tests in my ears and did some nerves tests , balance and brain tests .
After all that he said he don't think I have sinusitis or ear issues . He went through all 3 main ear conditions that cause dizziness and I don't really fit them. I tend to agree I have never really thought it my ear . He said for the face pain it is possible mild sinsus irritation from pollen etc but he more leaning towards a type of migrane for the face pain I get . Said sinusitis is actually quite rare and really over diagnosed by doctors more often than not it actually migrane etc related . He not sure but it could be hormonal or seasonal . I said I was not too bothered with the sinus type pain I can live with it unless it gets worse as it comes and go. It hard to believe it not sinus as it feels so like it but he's the expert .
He said yes it balance and swaying that you here for . He thinks it something that I cannot remember exact name but it basically where you had say an ear issue but now your brain has not compensated and it still at times thinks it out of balance . Uncompensated something ! He said that it really out with his domain but he suggested referral to a dizziness balance clinic and he said that guy is best in Scotland at dizziness and balance . Said basically you need to train your brain again by physio programme. It called vrt . He said there is some evidence is stress related too and more common in highly sensitive folk who get anxious and more tuned into their feeling in body . That def me. He said sometimes migrane medication or anti anxiety can help. Then finally he said if you worried it something serious like a tumour I could do a Mri of brain but said he seen nothing in my tests or symptoms to indicate that but some folk just wanted peace of mind . I said no as I would just get really stressed and worry over it . Said if I change my mind or if things get worse I could get it. That was only bit that unsettled me as not it niggling me maybe I should . But I won't . He did say the more you think of the balance the more you will feel it. So next step is to wait till the dizzy clinic contact me .
I have open appointment for a year with him if things worsen , i going to see my own GP on Friday to talk it through with her.
Sorry long post and not sure if I really have any diagnosis . Will just have to see what happens with dizzy clinic
if you got to end of this you did well
Ellie
helen60137 Elliejane44
Posted
Hi Ellie
Well done for going to ENT for a whole hour!!.
It's difficult for a specialist to give 100% diagnosis as many symptoms are similar to others.
At least you can move forward a bit and start to rehabilitate your brain. Where do you live Ellie? Are your clinics near to you?
I've been feeling awful this week. We moved house on the hottest day and then the next day I had stomach upset withe diarrhea. 5 days on I still feel awful. To top it off my dizzyness has gone to my left ear as well. Was only in my right ear up til now so I permanently feel swaying sensation which doesn't help the sickness. I'm seeing ENT next Thursday. I hope the sickness bug has gone by then. I'm on citalopram for anxiety but not helping. Taking Betahistine too so fingers crossed they start working.
Well I hope you begin to improve now. Let us know how the clinics etc go.
Tale care
Helen x
Elliejane44 helen60137
Posted
Sorry for delay in reply . I have been away on holiday to Cornwall . I had quite a good few days away with even a few days of no swaying or symptoms at all . I had no pressure and facial pain like sinus when away but today is worse ever with sinus pain and headache not as bad with swaying but it will be back . Ent not think it sinus but thinks it migraines or facial pain . Who knows . He said that out with his remit. Not sure what I do next with that. Back to gp prob ! It very humid today so that not help . Feel so stuffy
With regard to swaying . I not heard from clinic but will phone tomorrow . I will have to pay as I won’t get it on nhs or my health insurance . Yes apparently the person who runs it is very good . It about 10 miles away .
How are you feeling ?
How did you get on with ent ? Any diagnosis ? What did they say a d what tests did they do ? Interested to compare
Thanks
Ellie
Terry6872737 Elliejane44
Posted
Elliejane44 Terry6872737
Posted
Ellie
Terry6872737 Elliejane44
Posted
Lolasmom Elliejane44
Posted
The pressure is from my forehead right down to my maxillary sinuses. It plugs my left nose and left ear.
The pressure in my face is just so bad. And it also makes me feel off balance, and causes great anxiety. I have had this daily for about 4-5 years.
The neuro thinks it is some kind of silent migraine
I do get octular migraine seasonally in March/ April and then in Sept/October. Never a headache after, just the crazy eye stuff. Because of that the neuro thinks silent migraines are more apt to be the cause
Just so frustrating.......
helen60137 Elliejane44
Posted
Hi Ellie
I'm so pleased you managed a few days away. Good to get the fresh air and relaxation.
Well I went to ENT Thursday. I was in and out within 15 mins. He basically said it's Labyrinthitis but my anxiety worsens it. All he did was look in my ears, ask me to bend and move my head with eyes closed and open. Then he said I need to handle the anxiety and I will recover quicker!!
What a waste of £150 pounds.
I've had an awful 2 weeks with the anxiety. Panic and sickness etc. Going to go back to acupuncture this week as I found that helped.
So I'm no further forward now just putting up with the swaying etc. How did you get referred to a dizzy clinic?
If I go back to my normal doctor he will say it's anxiety making things worse. I'm only anxious because of this horrible Labs!!!
So for now I'm going to tackle the anxiety and then try to fight the Labs all over again.
Hope you have better luck
Helen x
Smitty89 helen60137
Posted
Hello Helen, sorry to hear you didn't get much out of the ent. I had the exact same experience with mine, except he told me I didn't have labs (previous ER doc told me idid) and basically told me if an Mri didn't show anything, there was nothing anyone could do. So I left feeling worse than I did before I went in. He did the same tests your taliking about. Complete waste of time.
I got referred to a dizzy clinic, because I ended up going to an old doctor I had about an hr away and told her everything I was going through, as my fam doc where I live now is terrible. She sent me to the dizzy clinic. Had to wait 1.5mts to get in, but this is where I need to be I think. I got lucky with getting into my old doc, because where I live, your only allowed one doc, so when I moved to my new house I signed up with a new doc. But hadn't seen my old doc in 3 yrs, she happebed to call me for my 3 yr physical. So went to see her and got the refferal. The following apt, she said that I terminated myself with her when I signed on with my new doc. Was super frustrated about that but had already gotten my dizzy clinic ref, so she said that's ok, just go to new doc for rest of stuff...the stars aligned there for me that's for sure.
Even pay to go to one of these clinics if toy can. It's what they specialize in. If yoy Google some of those previous tests I wrote to ellie, it explains what they do and what for. I don't want to get my hopes up too high, buy hopefully I get some answers. My swaying has slowed way down, but my eyes are a big bother still. I hope toy can find something that helps soon...
helen60137 Smitty89
Posted
Hi Smitty
Thanks for the reply. It just deflates you when your sent away with no real answers. He didn't even suggest exercises or anything. I reckon he just thinks its anxiety that's made my symptoms worse. I agree to an extent but to pay good money which I borrowed by the way and get 15 mins of rubbish is disgusting.
I'm seeing a doctor on Friday for another sickness note as I need to claim some sort of benefits now. I'd give anything to go to work I hate being stuck in.
Are you in the UK or elsewhere? Our NHS system is awful and I don't think we have a dizzy clinic on our island.
Well I shall see what the doctor says Friday. I took betahistine for a couple of months but stopped them when I had a bad stomach. Trying to cope without them for a while and have started taking CBD oil. Have you heard of it. Someone recommended it mainly for the anxiety. Done 2 days on it but I'm hoping for a miracle.
Good luck with your dizzy clinic.
Helen.
Elliejane44 helen60137
Posted
how you doing ? Are you managing to work yet . Any chance in symptoms
Mine pretty much went for last 6 weeks and I was going to post but scared to tempt fate . Had a stinker of cold all week with ear and sinus pain and guess what back comes the swaying feeling .
on plus side I flew and took a 14 hr ferry in summer with no worsening .
feeling low that it back
hope you have some good news
Ellie
Elliejane44 helen60137
Posted
I in Scotland .
i not used cbd oil either . My ENT thought anxiety was part of mine but that not explain why it back when I get a cold again. I agree anxiety makes it worse though .
Ellie
helen60137 Elliejane44
Posted
Hi Ellie
Glad you had a break from this illness for a while but so sad it's back again. Apparently it's common to come back after a virus.
I'm still not back at work yet!!!
I was doing OK for a while and coping with the swaying and fatigue then I had a sickness bug and Anxiety hit me big time. Never had it this bad before but it's put me back to square one. Anxiety always affects me badly but it flared up the swaying and ear pressure so I've been spending all my savings on acupuncture and hypnotherapy to try and reduce my anxiety.
Just can't believe it. Been nearly 6 months now with this horrible illness. It exhausts me completely.
I've had 4 good days in a month so I live in hope there will he more to come.
I findon't I try and do too much on a good day and then the next few days I'm swaying like mad and ab solute lying shattered. I've changed doctors but still get told it will eventually go!!!
Isn't it sad that we have to go on forums like this to get support. It should be our doctors that support us.
We'll here's hoping we are all going to improve. I'm dreading winter coming as it will be a long one if I'm still MOT working.
Nice to hear from you and keep strong.
Helen x
Smitty89 Elliejane44
Posted
Hello !!
Just an update with me, I went to the dizzy clinic last week and had hearing test amd ear pressure test done, in which the pressure test came back with some negative pressure in ears. I am going back this friday for about 80 mins of testing including
.EcochG (electrocochleography)
.ENG (electronystagmography
.VEMP (Cervical/ocular vestibular evoked myogenic potentials
.Video head impulse test
If I don't get any results from these test, I'm sure I'm out of luck..these are from a balance/hearing clinic, so if any of yoy have one in your area, maybe look them up and see if you can get in. They do the testing nobody else does. I will let you know next week how it goes.
Elliejane44 Smitty89
Posted
just wondering how you got on with your tests and how you doing now .
Since my holiday away I been pretty much normal 90% better . I put my appointment with dizzy clinic on hold . However this week I have had a bog standard cold and back comes the swaying and sinus . Sigh . My ears are all cracking and sinus sore
Guess it proves it must be ear or sinus pressure related . Hoping it not going to last months and months again .
ellie
so it
Smitty89 Elliejane44
Posted
Hello!!
I had half of my dizzy tests done and so far clear. Have to head back in oct for review. The past week I've had a terrible headache that won't go away. And a bit stuff woth some ear pressure which is new. Not sure if I'm coming down wit something, or if it's allergy related. Advil Def not working. Just took a NYquill day time relief for sinus to see if it helps. My neck is super painful right now too, so took a trip to physio yesterday, but only helped a bit.
I'm swaying again. Also for past cpl week. Was feeling a bit better end of juky, so had a bbq for boyfriend and had maybe 3 drinks, amd that was it. All came back. Actually had to take on of the bentahistamine pills I was precribed back in march. I've also been trying to destress. Summer with 2 young ones is super stressful so wasn't helping me at all. Just trying to relax a bit more and see what happens.
Started taking multi vitamin now too, and also monitorin my blood sugars to see if that's the cause of the weak shakiness. My insurance covers the machine, so why not!! Sometimes they are a little low, so recording it amd taking it back to GP next week.
I've requested this machine, because I feel I need to take hold of my health, and do things my way since docs don't really care in my opinion.