To Good To Be True

Some of you might have read my ongoing battle with constant dizziness/lightheadedness and general feeling of being off balance along with the usual symptoms of anxiety thrown in for good measure!

I thought after having to clear CT scans, seeing an ENT doctor twice, having an echocardiogram and wearing a heart monitor for 24hrs and having a scan on my neck and numerous other checks and bloods that I would start to feel better knowing that everything is checking out to be fine but unfortunately not its just not going away just when I think that things are improving and I have a good day it comes back and bites me in the backside today being a good example I've felt OK all day then go to bath my kids and bang it hits me, I go all dizzy and my body feels very heavy and like I'm being pulled to the right all the time then I go into panic mode and worry about what is happening to me, how I feel and what if I pass out, I'm so sick of worrying about what's going on all the time it's taking over my life!

I also had a call from the docs about some bloods I had done last week they want to see me so wondering if anything has showed up on them!

Is anyone else completely stressed and worried about what's going on with no answers?? Xx

Emma, hang in there, I know how you feel, a couple of good days then I felt excited all is well ... Then wham, back we go.  I have noticed that if I get tired I feel worse. Tried another MRI scan today but the noise even with headphones was just too much for me. Feel so stupid and yet I know indeed it doing to exclude so can reassure .dont know if my improvement is down yo betahistine  or my condition healing itself. Reluctant to let go of the meds though. You take care xxx

All the time that normal because we never know what is going to happen that's sstressful and nobody understand s unless u havethis I ppersonally have decided I have to keep pushing self hopefully I find the answers keep on keep inon good luck with your tests talk soon

I had vertigo for over 2 years. Like you, I was taking betahistine and prochlorazine to try and ease it all, I'd had all the hospital apts aswell the scans, the usual. I thought it would never end I was so sick for 2 years straight with it.

Then, I was sent for balance tests at the hospital. They explained to me that the doctors should never of let me have the tablets to ease it as this is one of the reasons why it didn't didsapeer quickly by itself. It might block the dizziness and sickness but when you stop taking them you're back to square one. During the appointment, I had all sorts of little tests done that made me dizzy on purpose so they could see what was what. After this, I was sick for 2 days and after that, I never had severe vertigo again ( I also stopped the tables immediately) I hope this gives you some hope as I was in the same boat as you never thought I'd feel ok ever again!!

Now I'm vertigo free and anxiety free!!!

I had vertigo for over 2 years. Like you, I was taking betahistine and prochlorazine to try and ease it all, I'd had all the hospital apts aswell the scans, the usual. I thought it would never end I was so sick for 2 years straight with it.

Then, I was sent for balance tests at the hospital. They explained to me that the doctors should never of let me have the tablets to ease it as this is one of the reasons why it didn't didsapeer quickly by itself. It might block the dizziness and sickness but when you stop taking them you're back to square one. During the appointment, I had all sorts of little tests done that made me dizzy on purpose so they could see what was what. After this, I was sick for 2 days and after that, I never had severe vertigo again ( I also stopped the tables immediately) I hope this gives you some hope as I was in the same boat as you never thought I'd feel ok ever again!!

Now I'm vertigo free and anxiety free!!!

I had vertigo for over 2 years. Like you, I was taking betahistine and prochlorazine to try and ease it all, I'd had all the hospital apts aswell the scans, the usual. I thought it would never end I was so sick for 2 years straight with it.

Then, I was sent for balance tests at the hospital. They explained to me that the doctors should never of let me have the tablets to ease it as this is one of the reasons why it didn't didsapeer quickly by itself. It might block the dizziness and sickness but when you stop taking them you're back to square one. During the appointment, I had all sorts of little tests done that made me dizzy on purpose so they could see what was what. After this, I was sick for 2 days and after that, I never had severe vertigo again ( I also stopped the tables immediately) I hope this gives you some hope as I was in the same boat as you never thought I'd feel ok ever again!!

Now I'm vertigo free and anxiety free!!!

I know exactly how you feel twice I've tried to have an mri and twice I've failed to I just find it so claustrophobic it's unreal I sobbed my heart out cos I was so scared but I know I need to have it done also if I want reassurance that all is ok so I hole heartedly understand where you are coming from perhaps we should go together lol, I'm waiting to hear from nuerologist to see if he will give me an mri as I've had 2 clear ct scans but I know I need one I will just have to brave it and tell myself it's for my own good.

I am shattered at the mo and I've got a stinking cold on the way but I'm just sick of feeling sick as we all are I know but it's just awful I've 2 young kids to take care of to x

I have had it over 2 years . I feel it now. Not as bad as it was. Yesterday and this morning was the best I've felt in like years. It comes bk but I'm not scared because I know I am having more an more good days. Because my diet is strictly clean. No alcohol no artifical sugar no gluten hardly any dairy no caffine... I have been going to the gym won't go alone because of anxiety my boyfriend comes. I got every single day even my bad days. I can't use treadmill I do weights sitting down and arms. Sitting down an legs. Lay flat and raise legs for my abs. Let me tell u I am the healthiest looming girl ever . I am seeing myself get stronger. I am not putting much interest in googling and everything that all ruined me for 2 years. Had all the scans . My vital organs are the best some consultants have seem. Don't know if it's migarine or ear damage still. Been told different. I don't care about it no more. I have days where I feel like death but I get up healthy meal positive TV programme an think can't wait for gym tommoro when this goes away again. I was coslnstant like a boat for 2 years horrid. I gave up on vestibular rehab and I gave up on appointments and I gave up on waiting for someone else to fix me or tell me what I have !! I am the owner of my brain ... believe an be posits ur brain is powerful and will fix itself. I'd risk my life to be rid of this but I wudnt give it up if I have it. I go the movies lastnight felt a bit off but I think what's the worst can happen if it got bad il get a ambulance... and be ok tomorrow like I always am. So I ignore it an it goes . Trust me dizzy free days come an they more they are coming the more I appreciate life. During my period it's worst granted an the days leading up. I am currnelty seeing a hormone specialist who said ye hormones can male u DIZzy if one is producing too much and another too less. I'm waiting for my results should hear next week. Diet positive an gym make me better . It's hard an makes u dizzier at first but the floor drop feeling has gone. Fones make me worse and bright tvs. Turn all brightness down xxxx good luck xxxx

I agree with you, after 2 years I also started to try and ignore it and telling myself so what if I fall or feel like I'm going to pass out and it did help!!!

At least we can sound off to each other and we know how we feel. Yep lets go to a scan together! Xx

Is there a way to keep in touch beyond this forum thing x

Since everybody has gone through all the correct usual steps with doctors I will give you some odd things to look up. Wisdom teeth..... if you do a seach on wisdom teeth and dizzy you will find another forum where people still had them and once removed felt better. Also vertical Heterphoria which is an eye condition. Last do a seach for issues with your SCM muscle which is in your neck. Good luck to all.

It does sound like you need to be checked by a migraine specialist for migraine, as migraines can be triggered/worsened by women's periods and light sensitivity (photophobia) is a common and key symptom of migraines. There are meds that can help prevent migraine episodes, so getting a diagnosis (if it is indeed migraine) would be helpful. And, no, the brain doesn't just heal itself from migraine; migraine is a neurological disease you have for life, and it can be genetic.

Emma this is the top 10 miss diagnosed conditions and we see it here all the time - please take yourself to a balance clinic that specialises in vertigo / dizziness ! Travel at great lengths if you must but see the experts as doctors are so often fail to where the specialist of the balance clinic/hospital know exactly what is going on.  You will need a referral from your local GP and yes travel maybe in hand but you need to go to the experts !  Google your area,  your closet major city and make a appointment . I recently helped a girl in America and I'm in Australia as she was in and out of the ER so many times but now she's correctly diagnosed and heading back on the right track!  Where do you live ? 

 

what was she  diagnosed with?

If I have a hormone inbalance. This causes migraines. The brain has the ability to do amazing things through positivity and diet. I have gone from vertigo where I couldn't walk for 3 weeks and fell here there and everywhere for months and months. To going to the gym every single day. It may be migraine, then il need to sort out my hormones.. I have never had a migraine in my life prior to this. And I don't have headache or any of the usual symptoms. I hope to find out soon but I am battling everyday looking to a higher source like energies and positive thinking as doctors and stuff I have been led to believe in says ok u have to live with it. I have lost all hope in them and if medicine regarding this problem x my sister . Unlike me doesn't have constant she has bad episodes. They all stopped the day she got pregnant . She could spin around and not feel dizzy... They returned 2 weeks after her baby is born. Please all look this up too x

Not completely sure but sounds partly vestibular and she needs to confirm from a specialst in this area - not an ENT or neurologist that does not specialise in vestibular area ! I had the same path until my physiotherapist pushed my GP to seek further help - now I see a vestibular specialst and my life is coming back together - saw all the others ENT , neurologist and finally went to a balance clinic over 2.5 thousand kms away and presto she diagnosed me as I had BPPV and I had the omniax chair - my life is 90 percent fixed with a wobbly from time to time but im back on track again 

Hi ashleigh,

I found your post it very encouraging.  I have now had VN for 13 months and have rarely taken any medication but do occasionally take the odd 2mg of diazepam (about once a week) as this is the only med that have ever helped my dizziness.  I was told from the start that the meds would interfere with compensating (regaining my balance) unfortunately I have not felt any better throughout the 13 months and in fact probably feel worse.  It may be due to the fact that I tried carrying on as normal during the initial phase and maybe try doing too much now and this has exacerbated my condition, I will probably never know.  What I want to know is did you feel better almost immediately after having the balance tests carried out or was it a gradual improvement over weeks. Do you know why this helped your vertigo or do you think it was all due to stopping the meds?  I have been doing the vrt for 6 months prescribed by my physio, this involves a lot of shaking my head side to side and up and down but without any positive outcome i will keep doing them though.

Also an open question to all on this forum, does anyone suffer with extreme lightheadedness like you are about to pass out?  I have had this from the start but feel this has got worse over the 13 months.

Anyway, I wish everyone on here better health for the future

Laurence

It's horrible to say but I'm glad I'm not alone as at times when your going through it, it's exactly how you feel, no-one around you quite understands how your feeling and they can't relate to you at all even though they try and then they reassure you that your ok but in my mind I'm not and its not right, what else have you tried? Xx

I try to push myself through it and j try to ignore it or say go on then do your worst but it makes me bloody miserable, I'm sick and tired of it now, I know ice had extensive tests and all come back clear which yes is a relief but it doesn't explain why and what's going on xx