Dizzy....but not dizzy....

[Nat79]

Hi there. I have been feeling constantly dizzy for about 4 months now....well when I say dizzy its more a feeling of my brain floating in my head, a feeling of lightheadedness which sometimes makes me feel quite 'spaced out' and like im drunk/drugged (when I havent drunk alcohol or taken any drugs!). Sometimes my eyes feel like they are really fighting to focus, dont get me wrong my vision is fine, it just feels like everything is more of an effort. Sometimes the dizziness is not too bad, and sometimes it gets much worse but there doesnt seem to be any triggers to it.

I have had an MRI which came back normal. My Neurologist has now written me off and is referring me back to my doctor so as he can refer me to a Neurootologist.

I would like to know if anyone has had any similar symptoms and also suggestions of things it could be would be greatly appreciated.

[Charmagne]

Is there any pain associated with the dizziness?

Have you ruled out an ear infection? That can throw off your balance.

[Bhupinder Kaur, MD]

Hello,

This feeling of light headedness can be due to ear infections and other causes like Meniere’s disease or inner ear diseases.

Other causes of dizziness include hypoglycemia and orthostatic hypotension.Pls get you blood pressure and blood sugar levels estimated. Take plenty of fluids and if you are having a low BP then increase the intake of salt a little.


Sometimes, there are partial or complete blockages in the arteries that supply the brain with blood.  These blockages can cause a temporary loss of blood flow (called transient ischemic attack, or TIA for short), or permanent loss of blood flow (called stroke; also called cerebrovascular accident).This can lead to impaired blood flow through these arteries and so dizziness.Pls get an ECG done to rule it out.

Get yourself examined by an eye specialist too as dizziness can also be caused by refractory changes and changes in the power of accommodation of the eyes.

Hope I have provided you with sufficient information. In case you need any more, then pls post us. Take care and regards.

[Nat79]

Thank you both for replying!

No I have no pain, no nausea, the doctor and neurologist do not think it is an ear infection and I have had all the usual blood tests and my blood pressure has always been normal....which is why im stumped!

I will definately get myself to an optician to see if they can shed any light on my dizziness, although it was not that long ago that I went.....having read other posts on this website I get the impression quite a lot of people have similar symptoms and most of them seem to be undiagnosed and in limbo which is a worse feeling than the dizziness!!!

Thanks again for your help, please let me know if there is anything else you think it may be as i will be taking all the info I get from this site back to the docs when I next go!!!!

[Bhupinder Kaur, MD]

Hello,

Some other causes of dizziness are dehydration,anemia,infections,endocrine disorders like thyroid, adrenal glands, and pituitary gland disorders,anxiety and panic attacks Blood pressure medications, sedatives, tranquilizers, antidepressants, pain relievers and some antibiotics can also cause dizziness.Cervical spondolysis,vertebrobasilar insufficiency and carotid sinus syndrome can also cause dizziness.

Pls discuss these possibilities with your doctor.

Hope it helps.Take care and regards.

[leebhawes]

You have CFIDS or a CFS/FM type disorder, I think. You need to find a doctor who specializes in treating with Anitbiotics- Doxycycline or Minocycline, as the theory is that these diseases have a bacterial component- small bacteria called mycoplasma. In addition, once your immune system goes out of balance, so goes your hormones, so you probably are affected by all of that. Blood tests don't reflect this, I'm told.

There are special blood tests you can take to see if you have viral/bacterial infections, and to check your immune system. Do a google search. I am seeing a doctor in Pittsburgh who works with these types of patients and has great success. check this out http://www.fibroandfatigue.com/ to find a doctor in your area.

[Nat79]

I have been to the doc again today and she is referring me to a top Neurology Hospital in London. She has also put me on Bethahistine and was concerned that the other doctors had not tried me on different tablets before to see if they help and she was really sympathetic to the fact that I hadnt driven since the symptoms started back in May, so I am feeling better that I have found a doc who is listening and who is going to refer me to a specialist hospital and is trying me on some drugs!!!! Yay!!!

[Nat79]

Ok, took the Bethahistine for a few days and about half an hour after taking each tablet I felt so much worse, so I have now stopped taking them and am going to phone the doc to tell her.

I am not sure I agree with them giving me random tablets to see if any make me better coz what if whatever they are giving me makes it worse long term? Surely giving me random tablets when they have no idea whats wrong with me isnt the way forward??

[xdawnx]

hi i have the dizziness to along with aload of other symptoms. I too was put on betahistine for about 3-4 weeks which made me feel even worse. There actually for ear problems which im sure i have nothing wrong with my ears!

Also i have been feeling, chest pain, breathing difficulties, headakes, eyes feeling puffy...droopy...watery...akey...have you been experiencing any of these?

My docotr has been prescribing me random drugs for ear problems...migraines....focal migraines, and none seem to be working ...any ideas?

Also how long did it take your doctor to send you for an MRI and is this reccomended?

Thanks dawn

[Nat79]

Hi dawn, thanks for your post.

I too have been experiencing something strange with my eyes, its like they are trying to go cross eyed but the muscles behind them are fighting to keep them looking straight forward, this makes them feel tired and I seem to get tired earlier than I used to.....this doesnt bother me as much as feeling drunk/drugged though....its really hard to try and describe these symptoms to people. I have also been getting increased anxiety, I seem to lose the ability to reason sometimes which leads to panic attack type symptoms and my boyfriend is sure this is part of whatever I have.

I dont however have headaches or any tinnitus or earache so I am a bit confused as to why im being given drugs for ear probs.

If I were you id push for an MRI, my doc was quite quick to refer me but that is because I have an aunt who has MS....I dont know if they are as quick if you dont have a family member with it....but the MRI didnt show anything abnormal...BUT they did only scan my head and if it is MS lesions can be found on the spine....so anyway im not too happy with what has been done so far as the docs are convinced I have a balance problem yet I am better at the yoga games on wii fit now than I was before i had my dizziness!!!!

So dawn, what action have the docs taken with you so far?

[xdawnx]

im exactly the same, being treated for ear problems...i have no ringing or noises of any kind in my ear or anything and i dont understand why my doctor doesnt realise this cant be what it is? And at the moment he's saying i have focal migraines which cause an aura so you get the symptoms...dizzieness....muscle weakness....tingling even when you dont have the headake. ive been taking these tablets for 3-4 days now and yes they have made me feel extremly worse so i need to go back again and see him. I get the panic/anxiety attacks too particually when im laying down to try and sleep at night or on my own. Its a scary thing having something wrong that you have no idea what it is...all sorts of things go through your head.
2 weeks ago my doctor said he wanted to refer me to a neurologist and still hasnt so when i mentioned it to him he said he wanted to try and treat the dizzieness first...isnt dizzieness something that neurologists deal with anyway as part of problems in the nervous system?
also like you im a bit funny about my doctor just trying me on random tablets...ive taken 5 different types in a months and sometimes they make me feel a lot worse and im not so keen on the idea of him drugging me up for ear problems when he hasnt even tested my ears? i think i do need to push to see a neurologist ive read so many posts and it seems like the only way to rule stuff out.
How are you nat? have you seen your doctor about those tablets making you feel unwell yet? ...and the drugged feeling is horrible, i get it too it stops me doing everyday stuff coz my head feels so muzzy i cant do anything!
so whats next for you, any ideas?

[Nat79]

I do feel that you need to be referred to see someone (eg a neurologist) who is more qualified to deal with your problem....after my neuro did the MRI and it came back normal he wrote me off but did send a letter to my doc asking them to refer me to a top london hospital which specialises in neuro-otology, which is basically someone who deals with dizziness and balance issues, so I am just waiting for that referral to come through, but docs take ages to do this I have found so keep hassling them to refer you to a neurologist, you have to be firm with them, I think the doc has proved he doesnt know what you have as he has tried 5 tabs so far and nothing has helped, and to be fair its your health and if you dont feel the doc is helping you push to be referred to a neurologist who will have a better idea of things you could have!

I left a message with the doctors receptionist yesterday saying that the tablets had made me worse so id stopped taking them and asking for the doc to give me a call....so far she hasnt but I will give her until the end of the day and phone and chase it up.

I know what you mean about it stopping you doing everyday stuff, I get good days where I will blitz the flat, cleaning, putting washing on, stripping the bed, etc, but most days are not so good and I just veg out in a zombie like state in front of the tv and cant even muster the energy to dry my hair!!! Its so changeable!!! I havent driven since May which is the bit I am finding hard to deal with, I am being reliant upon my boyfriend and parents picking me up and taking me to work.

So what are you going to do next? Do you know what tablets you have taken so far so I know what to expect?

[xdawnx]

im the same ive had this over a year now and it started with just dizzieness now ive got so much other stuff going on i can barely brush my hair some days i just feel so crappy and horrible.

the first tablets they prescribed me was betahistine which i was on for a week and they didnt work so he prescribed me another one for ear and balance and that was Cyclizine and that made me so tired i couldnt move i felt like i was drunk/drugged/hungover and asleep all the time i was awake. so he put me back on betahistine for 2-3 weeks which again didnt help. then he put me back on the Cyclizine which done the same thing again (why he put me back on them ill never no) then it was Stemtil which seemed to help a tiny bit at first then i just felt the same again after like 2 days and then now hes got me on Bedranol which are making me feel extremely worse. So not really alot of success there.

Are the betahistine the first things that have been tried for you? and how long have you been like this now?

at least you have had some sort of a test and are being referred my doctor seems to not want to do this with me which is pretty annoying i think he sort of thinks im mad and if i try explaining he just looks at me like im making it all up!

any idea what the specialist in london will try next?

[Nat79]

Your doctor sounds rubbish! Can you not see a different doctor at the same surgery? I think its trial and error until you get one that doesnt look at you like you are crazy and one who you feel is actually listening to you.....so far I have tried 3 different docs and a nerologist and im not convinced any of them have any clue what I mean even tho I try my best to describe all my symptoms. I feel very let down by the NHS.

The first doc I saw was convinced I had labrynthitus and put me on anti vertigo tabs which did nothing (obviously as I didnt have vertigo!), the second doc thought I had MS so referred me to a Neurologist for an MRI (he seems convinced its an inner ear disorder) and the third doc put me on the betahistine and is referring me to a Neurootoligist.

I have had these symtoms since May, so 5 months now, and to be honest I feel I might have to resign myself to the fact it could be a long long time until I get any answers. I mean its all very well giving me tablets to try and great if one makes me feel better BUT its not finding the cause of the problem.

I find that coz I look fine visually, people forget im not fine inside or think im better just because im not complaining about it all the time....

Anyway, I have no idea what to expect from the london hospital, ill just be glad when I get an appointment there! I really do think you should try a different doctor until you find one who is going to refer you. How long have you been feeling off?

[xdawnx]

started probably just over a year ago now. i was ill at the time was just about to have my tonsils taken out so i put it down to that thought it was just you no coz all the painkillers and that that i was on but my throat healed after the op and nothing else did and now over a year later still ehre feeling liek this!

Im making an appointment to see my doctor on friday morning so hopefully he might say something about seeing a specialist and if not ill have to push for it more.

Yeah same here i look normal except a bit more tired than normal maybe from loss of sleep through worrying all night!! but other than that i look fine its just everything i feel inside. And its so difficult to explain the way your feeling. when someone says to you what does the dizzieness feel like its so difficult to describe it so they understand what your talking about.

Ive only recently (3months) started seeing this doctor having changed from an old one that didnt seem to be working out and this one seemed quite good at first now im not so sure since hes not really pushing for anything to be done. maybe its me not explaining very well.

so where you ever treated for anything the doctors thought yo uhad...like an inner ear disorder?....(why are doctors so hooked o nthe idea of something wrong in your ears? =S)

Hopefully your appointment will come through soon anyway ...what's the doctor youve got to see specialize in this time? same here i dont mind the tablets as much as the fact that its not actually finding out what the problem is in the first place.

its hard not having any one to talk too. my fiancee has been brilliant i mean ive been ill over a year now and hes been great through it and my family but theres only so much you can put on to somebody else its difficult not being able to talk about it as much as youd like to and even worse when you do and someone doesnt no what your going through. i think these forums are brilliant ideas for people in the same situation to talk about it.

have you been tested for common causes ie anemie and such things?

[Nat79]

Yeah I had the standard blood tests at the beginning, everything was fine.

You poor thing, I was feeling bad having gone through 5 months of it but at least things are progressing a bit and im being referred to different specialists....but with you, it doesnt appear that its progressed as far....yeah, really push for something to be done, its hard to explain to your doc but really play on the fact that you are getting increasingly anxious about it all and tell them that you dont feel that enough has been done...its your health after all and you know that something is wrong with you and that you are not your normal self....tell then you have found someone in the same position and tell them ive had an MRI and am being referred to a neuro-otologist (balance specialist) and that you would appreciate the same level of treatment!

You would think that if it is something wrong with our ears then surely we would have earache or headaches or problems with our sinus? Which i dont....and surely if it is an ear prob it should be easier to sort out than this!!

Let me know what the doc says on Friday!

[xdawnx]

yeah i know it takes the mick a bit.
I will speak to him about it friday tell him everything that i think needs to be done and try and get him to sort something out for me.

hope you dont feel to bad, let me know when your appointment comes through or if you hear anymore from your doctor about it!

[xdawnx]

So my doctor had reffered me to a neurologist. gotta wait 7 weeks for the appointment though, in the mean time hes been trying me on more different tablets. at the moment its betahistine again but the doseis doubled!

has your appointment come through yet?
How have you been feeling?
Hopefully not to bad =)

[Nat79]

How is that going to help? Odd train of thought your doc has when those tabs make you worse he/she thinks oh ill double the dose and see what happens.....very strange!!! How is this double dose making you feel?

No I havent heard anything either, will try and phone the doc at lunchtime and chase it up.

I have been feeling really awful, work has been really stressful recently and it all got too much for me last night and I was in floods of tears about it all. How are you coping?

[xdawnx]

seems the same as you, do my best to get on with it till it all gets to much one day and i end up in floods of tears in a right state. ive been feeling pretty worse too not that i thought that was even possible!!

Yeah tell me about it, i havent actually started taking them yet ive been so worried about how there going to make me feel ive been actually scared to take them so i keep putting it off but ill have to start taking them tomorrow or friday so ill let you know anyway.

let me know about your appointment.
sorry to hear its been worse for you, i know what your going through and its terrible =(

[Nat79]

I too would be worried about taking them, I mean if a normal dose makes you worse a mega dose isnt really gonna make you better is it? I dont think id bother taking them if it was me, id be too scared.

My doctor phoned this morning to say she has done research and the doctor at this London hosp is an NHS and a private doc, she said she needs my private health company to send her a form to fill in to be able to refer me via the private healthcare. So I phone up the private co and they say that basically my file is closed and I will have to go through the NHS....I mean what on earth is the point of paying money to the private healthcare company? Its not as if they have even found out whats wrong with me or given me any idea what it could be....bunch of useless idiots! Sorry, but as you can probably guess, im really really angry about all this!!! Even my doctor was surprised and said that she would do the referral letter via the NHS for now so that something is being done and she said she would put a bit in the letter about the hold up.

I am just so sick of it all, its just delay after delay, I mean I know im not getting worse, my condition is not deteriorating but there seems like there is no urgency to even attempt to find out what my condition is and if they dont know what it is they cant give me drugs to make it better!

Anyway I now expect to have to wait until next year until I get an appointment to see this Neuro-otologist!!!

[xdawnx]

thats awful!!!! the whole point of private health care is they help faster and more efficently to find out what wrong!!!
i dont blame you for being angry about that i would be too its not right!
if your doctor said shes going to add the delay to the letter you might see them sometime sooner than you would of.
im still waiting for the confirmation of my appointment to come through from the hospital so i think ill have to ring them.
Im getting so sick of this i just want something thats going to help me now.
im so sorry bout all that youll still get there just keep asking your doctor to really push it because if they do you do get a faster appointment!

[Nat79]

Its just so frustrating and feeling like I do I dont have the energy to fight it at the moment.....before I had this dizziness I would have been on the phone having a go at them but I just cant muster the energy to fight at the mo!

Lets try and motivate each other to fight! I definately think you should get on the phone and chase your appointment, it seems that noone else is gonna help us so we have to do it ourselves even tho we just want someone to take over and sort it all for us!!!

Have you tried any of the tablets yet?

[xdawnx]

Tell me about it its extremely frustrating and exhaustiong. when you feel this ill its not what you need from people who ar emeant to try and help you. If my confirmation hasnt come through im going to ring the hospital on monday and try and sort it out. Hopefully.
No i havent taken them yet...I was planning on it today and i might still but i might take less coz hes given me a doubled dose but still wants me to take 3 a day and im really worried about how there going to make me feel so i might start off with one or two a day that way i can get it out of me quicker if it does make me feel worse.
So whats next?...just wait for your appointment?

[Nat79]

Yeah just waiting....its all I ever seem to do, just wait and get gradually more frustrated with it all which makes me more of an emotional wreck than I was to start with! Do you find that you get all emotional and blow the smallest things out of all proportion?