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Really Scared

Posted , 8 users are following.

emma93780
emma93780

I'm getting to the point where I am really scared my dizziness is something serious or life threatening! All day everyday it's there constantly along with a hole list of other things going on, I have been to the doctors, hospital so many times and I still have no answers or I have been given answers that just don't fit my symptoms.... I'll list below the type of things that are going on and see if anyone has similar, I really feel like I am going through this alone and no-one understands really how rubbish I feel all the time, it's getting me down big time and I constantly feel like I am going to drop down or they will find something incurable as it's been going on so long :-(

Headaches

Pain in back of head

Lump in neck

Lump on jaw

Pressure in back of head

Dizziness

Stiff muscles in neck and shoulders

Numb feeling in face left side

Sweating

Tired all the time

Humming in left ear

Pain in the back of left side of head and having to apply pressure to it to relieve it

Pain in and around jaw

Tinnitus

Stabbing pain in left ear

Body twitching

Heart pulpertations

Sense that I'm going to fall over

This is what I've been feeling for the last 2 years, I've had head ct, bloods, seen ent, been to a&e, had physio, accupuncture, eye test, hearing test, echo on heart, 24hr heart monitor, therapy, dentist, meds galore.

Been told it's anxiety, migraines, vestibular neuritis, tmj, temporal neuralgia, tension headaches, stress and one doctor who said I don't know what's going on its a process of elimination.

I am stressed and anxious beyond belief with what's going on with my body I generally don't feel well, I'll have a day or 2 when I feel ok then bang it hits me and I'm dizzy beyond belief.

All I want to do it cry and for things to get better I'm a mum of 2 smalls children and this is ruling my life :-( x

0 likes, 47 replies

47 Replies

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  • debbie82116
    debbie82116 emma93780

    Posted

    Hi Emma

    Please take a deep breath and read this carefully. You are not dying. You have the exact same symptoms as what i had. It really does sound like vestibular neuritis. Its nasty but it won't last forever. I had it for 2 years but i got help. The first thing you need to do is get your anxiety under control. Half your symptoms will disappear when you do. I am on an anti-depressant.....saved my life. Then you should go to vestibular rehab. These are special exercises to retrain your brain as a virus has attacked your balance nerve and is causing the dizziness. Your brain is getting mixed signals from one bad ear and one good ear. VRT is what you need ASAP.

    Emma....it goes away if you do these things. I am 90% better now. It takes a long time. Eat well and walk 15 minutes each day. You also need to get 6+ hours of sleep each night. I know its not easy with young children. Been there xo

    Debbie

  • rocksolid
    rocksolid emma93780

    Posted

    Don't freak out. If you give the feeling a life of it's own it will take over. I have been light headed for 4 yrs +. It could be vestibular neuritis so you should go to an ENT. I was told I have verticle Hetrophoria which is an eye issue. You could also have an issue with your SCM Muscle which is in your neck. Look up both terms to learn more about them. I have also found a forum where people were having these issues because of their wisdom tooth, so that could be something to consider.
  • emma93780
    emma93780

    Posted

    I have an ent appointment on Wednesday which I'm in a way looking forward to as hoping he can give me some answers, I know I need to try and get a hold of the anxiety about all this to, I am and have been for 4 months been taking sertraline and propanranol to help combat it and I have just had my does increased to see if that helps, I think because I feel so s*** that I'm stuck in a rut a vicious circle and because I'm not getting answers just getting or feeling more poorly I've convinced myself 100% that's it game over, there are so many of you helpful people out there on this forum it's unreal as no-one at home understands just how I feel, they think I'm nuts or that it's something that I can just snap out of which I honestly can't, the dizziness and bad head and neck are getting me down constantly.

    I here what u say about wisdom teeth I had one taken out 5 weeks ago which was impacted and was praying it was that making things worse but unfortunately not! I'll look up the muscle thing as I know they are tight the physio said etc.

    I'm just so fed up of feeling this way all I want to do is live a life pain and worry (well illness related) free!

    Thank you for your comments guys means a lot xx

    • debbie82116
      debbie82116 emma93780

      Posted

      I went to a massage therapist once a week to ease my neck and head pains. It helped me tremendously.
    • emma93780
      emma93780 debbie82116

      Posted

      I've tried massage and unfortunately it made me very sick think because there's so much tension and made me feel rough all day x
  • lisa08672
    lisa08672 emma93780

    Posted

    Hi,I've had dizziness for 3 months,I also have 2 young kids and its breaking up my family and i cant work,I've had all the same symptoms as you and few others, I get rid of one then I get a few others,I've had tests done and the doctors look at me on me I'm mad, I had my 2nd ever panic attack Christmas night was so scary as if dizziness wasn't enough,I just want to go back to work and be normal again and be happy in my relationship but he doesn't understand what I'm going through,I hope you have a supportive partner,take care, lisa
    • emma93780
      emma93780 lisa08672

      Posted

      It's awful isn't it Lisa? I know exactly what you mean, do you know what started your dizziness did anything you can think of trigger it off? I have a husband he is supportive to a certain extent but he doesn't understand why I'm like I am when I never used to be and he's getting frustrated because I'm not getting any better! He supports me and helps with the kids when I can't but it does put pressure on our relationship at times as he works hard and neither of us seem to get a break, me from feeling like this and him having to graft all the time! It's got to the point at the mo where I don't want to go out from the fear of feeling poo and having a panic attack, I'd rather stay in the comfort of my own home so if anything did happen id be at home which is no way to live I never used to be this way and I cannot pin point exactly when it went wrong or how long ago!!

      Are you taking any meds?

    • lisa08672
      lisa08672 emma93780

      Posted

      Hi Emma,I started having ear pains in march so doctors gave me antibiotics but then a few weeks later it would come back again with severe dizziness so they think it was a ear infection that kept coming back then i started getting the other symptoms and was told its stress but I didn't believe it,I had eye trouble which turned out to be dry eyes,5 opticians I saw then the last one said its not in your head gave eye drops and few symptoms went,the ent doctors said it was a type of vertigo but they keep telling me different things,now panic attacks have started, its not me I'm confident,bubbly and love life and work but I'm housebound most the time,I'm taking stemital for the dizziness but can't take it forever
    • emma93780
      emma93780 lisa08672

      Posted

      They thought my dizziness started with labrythitus as I was laying down one day went to get up and I couldn't, had a massive panic attack and everything was drawing in on my slowly, was never given antibiotics, was told what I was and given Stematill also but that didn't work so they tried a few others which I ended up and an allergic reaction to, I ended up paying for a private ent as they said the wait was 6 months on nhs and he wasn't really very good he did a few tests but said it was vestibular neuritis and gave me some excercises to do which haven't helped either, when I get dizzy I have to hold on to something as I feel like I'm going to fall then I get all sweaty and my heart starts pounding! Right now I've the mother of all headaches and I've 2 small kids 4 & 7 months so it's hard going with them to, I am usually life and soul to so just don't understand where it has all come from on and off I've been like it nearly 3 years X I'm due back to work in Feb and am dreading it going feeling like this all the time don't know how I am going to concentrate on my job! Xx
    • debbie82116
      debbie82116 lisa08672

      Posted

      The virus of vestibular neuritis causes inflammation in the ears. I had the same thing. Heat packs helped along with a pain killer or anti inflammatory as you would take for a headache. I no longer have pain or pressure in my ears. It is not an infection....it is viral....antibiotics will not help.
    • lisa08672
      lisa08672 emma93780

      Posted

      I couldn't work like this as i struggle to even do my housework and look after kids, so tired all the time just no energy,my girls are 13 and 3 so my eldest helps out of I'm desperate, I don't like her helping much as she is a child and I want her enjoying herself while she's young,little one is hard work
    • lisa08672
      lisa08672 debbie82116

      Posted

      Hi Debbie,how long did you have it for and what treatment did you have?lisa
    • debbie82116
      debbie82116 lisa08672

      Posted

      Hi Lisa

      I am 90% recovered now. Had it 3 months. I also had it in 2008 but it lasted 2 years. Sad thing is it can come back.

      I am taking anti depressants (lowest dose) and that's all. When i had really bad ear pain and headaches and neck pain, i used ice packs, heat packs and Advil which is an anti inflammatory here in Canada. I walked 15 minutes every day, went for neck massage once a week and took lots of extra vitamins to help my immune system get stronger. I cut down on salt and caffeine. No alcohol. I saw a therapist for anxiety and a vestibular rehab specialist for exercises to retrain my brain.

      It was hell but i am managing very well now. I'm only slightly dizzy when i first wake up and then i have no other symptoms!!

    • emma93780
      emma93780 lisa08672

      Posted

      I've got my mum and my sister if I need them but not all the time, I know how u feel when u say it's a struggle to do your housework, some days I can't even be bothered to get dressed or clean my teeth cos it's uses to much energy, i just want to feel human again and enjoy my kids and spending time with them instead of walking around dragging my chin on the floor all the time, I know it sounds like we are moaning and that doesn't help how we feel but I don't know about u but having a good winge sometimes makes me feel a little better!?! X
    • lisa08672
      lisa08672 debbie82116

      Posted

      That's really good,im going back in 3 weeks time to ent doctor so I might mention about brain training exercises,worth a try.I was anaemic and vitamin d deficient so I will start taking vitamins to build my immune system up again,I'm trying to stay calm as the dizziness is very scary
    • Bestie711
      Bestie711 lisa08672

      Posted

      I know it's not easy Lisa, but do you think it could help a little if you got your partner to read this forum and check up what some people are saying and going through? It may make him a little more open to being supportive, I hope. He has to try and understand that just because he cannot "see" what's wrong (like a missing limb), it doesn't mean that nothing is wrong. I'm sure it's hard on him too, but it's a 100 times worse for you.
    • lisa08672
      lisa08672 emma93780

      Posted

      It does help lol,have you had any eye problems with the dizziness?I sometimes get a blurry right eye when I have right ear pain and it feels slow in movement. I also have my mum that helps and brother and his wife so I have family support which helps,I love going out with the kids but its such a strugglexx
    • lisa08672
      lisa08672 Bestie711

      Posted

      That's a good idea,I will show him tommrow and maybe it might help him to understand a little better,I did say to him I might look OK on the outside but on the inside I feel really ill.I understand its hard for him but just a few sympathetic words help me get through the day,I get them from my mum and friends
    • Bestie711
      Bestie711 emma93780

      Posted

      Emma, try to get him to read stuff here, like I mentioned to Lisa. A little bit of understanding could perhaps help him to be more supportive. The other thing I want to say to you is this: I don't know if you're seeing a psychiatrist or a specialist in panic attacks, but you should. You mentioned wanting to stay in your home, etc. I have agoraphobia. I would not wish this on anyone. Panic attacks can lead to agoraphobia, if you let it. Don't let it get to that stage. You don't realise it now, but it will save you so much of agony. It's important that you can keep going out and try to do so, even if it's just for a short time. Someone here mentioned going for a walk. Just do it. If you get agoraphobic, trust me, things will be ten times worse. Do whatever it takes to keep going out and not end up like me. 

      You're not alone. It isn't easy. Other people cannot understand this. But you will find the strength within you to take this on. It will be a long battle, but you'll come out on top. You have everyone's support here, that's for damn surewink

    • Bestie711
      Bestie711 lisa08672

      Posted

      You will get help from family and friends. For some reason that I cannot explain, it seems harder when it's a partner. For what it's worth, I'm a guy and I used to play football (soccer) years ago (and I was bloody good too, I might addwink), so let him know it's not just women who get these things. Perhaps that's what he's thinking, so tell him guys get it too. It's tough on us to get sympathy because we go through with something that cannot be seen. You see a guy in a wheelchair and everyone's rushing to open doors and things like that. We're a forgotten bunchsad
    • lisa08672
      lisa08672 Bestie711

      Posted

      Are you in the UK? as I've noticed most people on this site are in america and you mentioned football(soccer in brackets)lol be nice to find someone in UK with dizziness,think I'm the only one :-( it is an invisible illness as I put my makeup on daily and I look good but inside I'm really ill,if I was in a wheelchair people would offer to help,my brother and dad are not sympathetic either but my mum and female friends,relatives are great,men are tougher I think and don't moan to much lol
    • Bestie711
      Bestie711 lisa08672

      Posted

      No, I'm actually in Canada but I grew up in Singapore. I know it as football but here, when you say football, they think of the American version. I grew up watching English football and my nickname here, Bestie is after my favourite footballer, George Best.

      It would really help if they were open to a little education on the subject, otherwise it can be difficult for them to fully get this. Perhaps one day, by chance, a documentary may be on TV and it would be good if they saw it. Unfortunately, it's one of those things that people kinda blame you for, and they sorta expect you to pull your socks up. "Pull my socks up" was something my sister-in-law once said to me. I never forgot it. If I could pull my socks up, I would have done it by now. Unfortunately, there seems to be something greater that's winning most of the time. rolleyes

    • lisa08672
      lisa08672 Bestie711

      Posted

      I like all the old footballers they have some legends,i grew up with Gary lineker and Gazza,i met Raheem sterling few years ago at a England under 21s match I wasn't keen on him lol,I support Liverpool but we lost Steven Gerrard to USA :-( .I've been trying to keep sane with my dizziness it can be so hard, I've had it 3 and half months and just want to go back to my job as I love it so much,I got two kids so all my energy I have is drained,how long have you been ill for?lisa
    • lisa08672
      lisa08672 Guest

      Posted

      Yay my first dizzy Brit,how long have you had it for?I've had dizziness for 3 and half months now,MRI and balance tests all normal which is good but means I got no answers yet,last ent doctor told me its benign positional vertigo and performed a Epley manovre,I was better for a few weeks but I have times like that then I get really bad again, I'm going back in 3 weeks time,lisa
    • Bestie711
      Bestie711 lisa08672

      Posted

      Haha Liverpool fan eh? I'm afraid my parents said I can't talk to you anymore lol just kidding. As you can guess, I'm Man Utd till I die! Yea, Stevie G was phenomenal. He is one of those players who is irreplaceable. 

      I've had my problem with varying intensity since 1981. 

    • Guest
      Guest lisa08672

      Posted

      It started on my honeymoon two years ago and they gave me a ct scan there and then. It comes and goes. I get an attack of vertigo when I am unable to stand at all and then I am left dizzy for about 3 months, it always seems to be worse in mornings. The ent doesn't seem to do anything now though xx
    • lisa08672
      lisa08672 Bestie711

      Posted

      I used to support man u lol,Alex Ferguson, Ryan giggs,peter schmichael was great back then.wow that's along time to have it,I had dizzy spells for a few years back in 2002 but never where I was scared to go out,the dizziness is so strong this time and years ago I never had other symptoms just lightheaded 24/7 and dizzy spells on and off,hope your not to bad today,lisa
    • lisa08672
      lisa08672 Guest

      Posted

      I've had my dizziness 3 and half months now,I had dizziness back in 2002 few weeks before I had my first child and it lasted 2 years but never had any other symptoms, I never recovered 100% but traveled,holidays,work now I can't do anything,they said I had a inner ear infection that damaged the balance but I never had ear pains or head pressure etc.this time they said they think its benign positional vertigo,take care,lisa
    • lisa08672
      lisa08672 emma93780

      Posted

      I'm in Worthing west Sussex,a lot of people with dizziness are in canada and america,its lovely to hear I'm not the only Brit with it,how are you today?lisa
    • emma93780
      emma93780 lisa08672

      Posted

      I live in Wales, I know what u mean you can tell when people reply they are somewhere else cos it's usually when I'm asleep lol I'm having a crap day today dizzy, dizzy, dizzy, I'm trying to slap a smile on it but failing miserably, how are you? X
    • lisa08672
      lisa08672 emma93780

      Posted

      My mums family live in lisvane cardiff,im the Same as you dizzy,I'm meant to be going to tesco to get a bit of shopping and I'm dreading it I just want to curl up on sofa with TV on but my little one Madison is so demanding,my boyfriend works 6 days a week as he's an insurance manager so I come to my mums house,I live on 3rd floor in a flat so hate been up there alone with kids,I've only had two panic attacks ever but I'm scared stiff of having another,1st one I was taken in a ambulance to hospital,2nd was Christmas night ,lasted a hour.xx
    • emma93780
      emma93780 lisa08672

      Posted

      Lisvane I know it well we live in Llantwit Major which is only about 15 miles from Lisvane! How are you feeling today did you manage to get your shopping done? I've taken to online shopping now as I haven't got the energy to be battling the shops with how I feel and 2 smalls in tow X
    • lisa08672
      lisa08672 emma93780

      Posted

      Hi Emma,yes I managed to get my shopping done with the help of my eldest daughter thank you,was a battle though as I'm really dizzy today,I now have ringing again in ears,haven't had it in weeks,I just feel unwell and scared to go out,laying down is the only time I feel ok but try and force myself to carry on, do you get days where your so bad it scares you that your going to never get better or get even worse?I have felt like I'm dying at times not a nice feeling,I'm trying to get my mind of it today but its there so I can't,take care,lisa xx
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