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I can't go on like this 😢

Posted , 7 users are following.

Keira8488
Keira8488

so here's my story............March 12th 2017 I woke up one day with a dizzy/fuzzy head feeling every single day until September 2017 when I became pregnant. I've recently gave birth to my daughter in May 2018. the fuzzy head went away for a whole 9 months while I was pregnant, but I was taking 75mg aspirin and I'd quit smoking the whole 9 months. while I was pregnant they told me I had notching arteries 🤔 anyway i went to the doctors numerous times last year they kept saying it's anxiety 😢 ok I may be worried but everyone would be if they was dealing with this everyday. I saw a neurologist in 2016 for one sided headaches only no diziness or foggy head then and he did a mri scan and it was clear. doctor has given me fluoxetine I was on those for 5 months with no relief I've been on propanolol I've been on vertigo tablets no relief. I've been on naproxen no relief. well after 9 months of being free from this dizzy foggy head bam it's back again everyday 😢 I just can't cope it's deliberating. this time my gp is sending me to an ent. I've also seen a cardiologist I've had a ecg..24 hour heart monitor and a tilt table test all come back fine.

anyone have any clue what this could be or anyone going through the same thing?

I was thinking it could be my arteries? I've started smoking again after pregnancy and I stopped the 75mg aspirin as soon as she was born in May 2018.

I cry all the time because of my symptoms and I can't get passed my doctor sometimes because they keep saying it's anxiety but if it was wouldn't I of had these symptoms through my pregnancy also more after losing my boy at 27 week's gestation in 2012?

sorry for the long post I just need to tell someone x

0 likes, 18 replies

18 Replies

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  • Waffalobill
    Waffalobill Keira8488

    Posted

    Still need lots of testing to rule out other causes. Could be alot if things. Unfortunately vertigo and dizziness are symptoms and not a disease. Lots of things can cause it. Plz don't let them pull that "it's in your mind" crap on you. If this ENT has no answers try another one or step up to a neurotologist. Not neurologist, neurotologist. They know alot more than a ENT.

  • matt57085
    matt57085 Keira8488

    Posted

    As above don't let them pull that s**te that it's all in your head garbage!!

    I'm sure i'm being marked with the anxiety card and pretty much had no help at all.

    It's been 24/7 non stop for me now for 48 weeks now and it was off and on for six months before that.

    For me,

    ENT referral NO

    Heart checks NO

    Ears checked NO

    Eyes checked NO

    I could go on.

    My GP finally referred me to see a neurologist 3 months after it became 24/7 and i waited 30+ weeks and had to complain otherwise it would've been even longer. I saw the neuro 3 weeks ago and he ordered an MRI which i had 11 days ago.

    Good luck and if your in the UK get ready for no help or care from the NHS👎👎👎👎👎👎

    The person above mentioned about a neurotologist and after research that's probably your best bet but i've searched far and wide from my area in the UK and can't see any services for neurotology anywhere at all, zero, nilch, nowt.

    CONGRATULATIONS on tge birth of your daughter👍👍👍👍

  • des91
    des91 Keira8488

    Posted

    Check your ferritin. Should be 50+.  I’m in a iron deficiency group on fb and see a lot of women post of dizziness going away when pregnant but coming back when not pregnant. Not sure why. In fact, I’d make sure ALL of your vitamin levels are optimal levels. B12, magnesium, vitamin d, etc. 

    I’d also get an echocardiogram done just to be sure your heart is fine. 

  • Keira8488
    Keira8488

    Posted

    thank you all for your replys. I am in the UK. I'm so fed up with doctors tarring me with anxiety just because it's on my medical records that I do suffer with anxiety due to losing my boy at 28 week's pregnant but this is not anxiety. im just so scared and it will make me feel worse if I feel these doctors are not helping me. I was thinking of going to PALS about it all. not sure where I'd stand with that x

  • nancie14106
    nancie14106 Keira8488

    Posted

    Hi Keira I'm like you with these same symptoms although I get headache and nausea as well.Interesting you didn't have symptoms throughout your pregnancy.Perhaps it could be hormone related or pressure related.I feel like my right ear is bungled up with wax it's never popped ever it feels saw like something pressing down on it.So it could be a pressure inside your inner ear that's pressing on a bone to unbalance you.when you were pregnant your body may have maintained the pressure so no inner ear problems.I woke today have had no drugs as of yet it's been 5 hours but I'm doing ok I'm trying to work out why yesterday had it 24 7 like most days for 7 months but today I'm doing better could it be my hormones I also have sore lips not sure if the 2 are connected.i don't think my eustachian tube is doing it's job but ent consultant said there nothing wrong with it.So why do I feel pressure.Could something have flown in your ear or a spider in the night

    I think it's weird how it comes on so suddenly one minute normal life next no life.Mine is made 100% worse when I get in a car full blown vertigo it's horrible I need it to go.Try and stay strong I know it's hard even harder for you with a new born.Write down any symptoms on a daily basis is there a common thread you'd be surprised what simply writing down time and symptoms and what your doing can have an insight look forward to your reply

    • Keira8488
      Keira8488 nancie14106

      Posted

      I sometimes get headache too but only on one side of my head. I sometimes feel sick too. i was fine last March I just woke up like this and it's not left me since only the 9 months I was pregnant. the thing is though my doctor keeps saying it's anxiety so I can't get passed them the only reason this doctor referred me to an ent is because it was a locum doctor. he said it's been going on for too long now. I'm really scared of the outcome. I just wish someone could get to the bottom of it. mine is like a drunk hazy foggy dizzy feeling it's so hard to explain. but some days it's like I'm having head rushes like when you eat a ice cream and you get that head rush. are doctors investigating your symptoms? have you been diagnosed with anything? x

  • lynn614
    lynn614 Keira8488

    Posted

    I cannot comment on the possible connection between hormones or smoking and your symptoms. However, last year, I was bedridden for 4 months with dizziness/vertigo. I stopped takinetoprolol and it got better to the point that I could function again. 

    I thought it was probably labyrinthitis or vestibular neuritis and I would be okay. However, I started getting worse again in February. I’ve been incapcitated for a few months now. I need an MRI but I don’t feel well enough to get through it. One ENT suggested Menieres but I have no hearing loss. Reading the posta on this forum, it seems like Meniers is a cop out diagnosis that ENTs give when they really have no explanation for symptoms. Dizziness is the number two patient comolaint. but doctors have no idea how to fix it. I can’t and don’t want to continue to live like this and it amazes that doctors expect people to do so. 

    • Keira8488
      Keira8488 lynn614

      Posted

      it's awful isn't it. I feel the same way. I don't want to continue like this it's deliberating. I keep crying because of it. I'm just so fed up with it. I'd be ok if they could just get to the bottom of it and tell me what it is. it's making me anxious thinking that there is something seriously wrong with me. it's no quality of life and they don't understand that.

  • jack11633
    jack11633 Keira8488

    Posted

    Hey Keira

    Sounds like MAV.  Or at least you need to suggest it to the doctor. Smoking, emotional stress could be one of your triggers, and lots of women say that it goes away when pregnant...it seems to be connected to hormones.  Mine started the same as you same time.  Join some Migraine Associated Vertigo support groups and start reading and researching.  From my research I personally think all of this is due to a virus that was circulating the last couple of years, probably Epstein Barr, a type of herpes virus that lives in your vestibular system and comes out when you are stressed, sick, or triggers.  Trust me join some groups on face book you will see.

    I am writing this to you because when I first got sick I came here and couldn't get a straight answer anywhere. I have been to countless doctors, had MRI- clear, negative ANA - test for autoimmune like Lupus, RA Rheumatoid Arthritis.  ENT's are USELESS! Look up vestibular therapy on youtube do some exercises for the dizziness/unsteady feeling.  I lived on a rocking boat for months twice, finally did the exercises and changed my diet and take supplements now I am living almost symptom free.  Ask for the EBV blood test to see how your tilters are....if you have nothing then start looking at something else. MAV is another crappy diagnoses like Meneries...I think they use it when they really have no clue, but thousands of people all coming down with the same symptoms is super suspicious,

  • Keira8488
    Keira8488

    Posted

    thank you so much for your reply. I will Definetley look into joining some groups on Facebook. I feel so ill everyday. sometimes i wonder if life is worth it to feel this crap all the time. it's making me feel depressed just feeling fuzzy headed 24/7 x

    • jack11633
      jack11633 Keira8488

      Posted

      YES your life is worth it, this disease/illness brings on Anxiety and Depression! The illness puts you into flight or fight mode all the time.  I have seen countless people saying the same thing, and I was there myself!, It is very hard when you are that ill to see clearly. What I can assure you since having this twice and for long periods of time is you will get better. Getting better will be up to you, not doctors, education and CHANGE is the only way to get better.  Your fuzzy head feeling is normally described as Depersonalization/derealization which this illness brings on both, such a weird feeling.  I also want to advise you to write down everything. you need a new doctor, you have to bring in your list of all the symptoms no matter how crazy they will still push meds at you, if you do natural diet and supplements you should clear this up! Can you take some Magnesium? this seems to be the key for alot of people

       

    • lynn614
      lynn614 jack11633

      Posted

      What’s the recommended dose of Mg? I know that my cit D level was low and I’ve been taking that but I hadn’t heard about Mg until this forum. I’m experiencing dizziness and vertigo 24/7 and Meclizine isn’t really helping. 
    • jack11633
      jack11633 lynn614

      Posted

      Hi Lynn, I have read staying under 500 mg is advisable to not put damage on the kidneys. There is a crazy, very technical sometimes confusing but amazing group on facebook called the magnesium  root protocol, lots of info in there that has helped many a people with autoimmune disorders. Also plain old regular Mag gluconate from the vitamin section is fine, but I have now moved on to bisglycinate plus, something a little more gentle for my stomach - take so many supplements.  I found out all the different kinds and forms of mag from that group.  What is your dizziness vs your vertigo? If you are having true spins you most likely have BBPV. You need to do the exercises to settle your crystals.  Do you have pain or anything else?  I did vitamin D as well, since my levels were low too...but the mag protocol advises against it.  Also if you are getting outside in the summer sun you are good.  The basical protcol for this illness- I would say is Mag, Vitamin D in the Fall or Winter, Vitamin C heavy doses especially when flaring, Coq10, and antiflamatories, like tumeric, cats claw, ginger, both fresh and pills make and take lots of ginger tea.  Antivirals - garlic take pills, crush the cloves let sit for 10 mins then mix with olive oil, horrible going down, Apple cider vinegar daily, take this in the am, mix with lemon, water, honey.  This is my personal protocol, I am up walking, functioning at 98% for over 3 months now.  Sleep every day at the same time, get up the same time.  Rest in the day, push your self for small amounts in the day. Get outside - THIS IS A MUST, it will retrain your brain to compensate for the vestibular damage.
    • jack11633
      jack11633

      Posted

      lastly - stop taking all DAIRY, WHEAT/GLUTEN.  This diet change needs time to work but these foods keep the vestibular system inflamed.  Go back to a real diet, no processed foods, cut out as much caffine as possible, avoid triggers like alcohol and smoking.  I will admit that when I was like having enough of this illness I would have beer, it numbs the vestibular system and gives you temporary break...I will advise that you might pay for it later....but I never went over two.  Every day do something in the form of meditation - yoga, deep breathing, or meditation itself.  This how I am thankfully living my life again.  I still write down everything so that I can understand this illness better.
    • lynn614
      lynn614 jack11633

      Posted

      I think I have both dizziness and spins (vertigo). I have always had neck paina nd I’ve been having jawnpain lately, which I’ve also had in the past. A few motnhs ago, I hurt my shoulder and I also got whiplash. I don’t knownif any of that could be making things worse. 

      Everybody is mentioning exercises but I don’t know what they’re referring to. 

    • jack11633
      jack11633 lynn614

      Posted

      okay for the "true vertigo" spins, you need to do the epley maneuver or you can try the half somersault by dr Carol Foster - both of these might make you feel worse before it feels better.  

      Next if you are unsteady - wobble, rocking boat, or trampoline feeling this needs VRT Vestibular Retraining therapy. You can get help proffesionally or FREE on youtube. I live remotely and have to travel to see a doctor so I did mine on youtube, and I printed off exercises.   The more you get outside you will progress...it really pushes you, start walking asap, bring ski poles if you think you will fall over.  I too had the "jaw pain" - I thought it was TMJ at one point, but lots of people say that the illness brought on the jaw stuff too.. I also had whiplash but that was 10 years ago from a car accident, for the last ten years I thought the constant neck pain and not being able to turn my head left was because of it, now the specialist says its from this illness/disorder/ MAV.  Also, all of you ladies need to rule out Lyme disease, it causes very similar symptoms, if everything comes back clean make sure you check for Lyme.  I see lots of people testing positive for Lyme or co infections and have been given this mav diagnoses or even vestibular neuritis.  I would say the injuries are not helping - there is some connection, I wish I knew.  

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