My vertigo, and how I manage it

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Hello,

New here, and I wanted to recount my story somewhere, and also be able to list what has helped me cope. So that maybe someone else can benefit from my trial and errors. 

This all started a couple years ago for me. Randomly maybe once every couple months or so I would get this violent feeling of falling through the floor. Or being pulled to the floor. I would feel dizzy for a minute and then fine. 

It was a little concerning but I was on Paxil at the time, and figured it was maybe just a side effect to that medication or something. 

fast forward to March of last year. I got up off the couch from watching a movie. And felt like I had the drunken spins! Balance was off, and everything was moving. I sat back down and laid still for about 45 minutes and the feeling went away. I was completely fine. So ignored it.

Then a month later, my whole life changed. I was awoken from a dead sleep. Due to the feeling of spinning, rocking, swaying. It was nearly unbearable. I felt like my whole house had been cast out to sea in a storm. I would turn my head, and feel like my head would just keep rolling forever. 

I went into the bathroom, not sure what to do. And began to throw up. luckily not much was in my stomach as this was the early hours of the morning. I sat in my room, on a chair for a little while. Hoping it would pass. 

No matter what I did the world spun, I decided to go lay in the bath. After throwing up again, just from the feeling of walking from my room the bathroom. I finally laid down in the hot water. and just stared at a fixed spot on the wall. 

After what felt like forever, I finally felt I could get up and move to the living room without throwing up. And laid on the couch for a few hours, unable to close my eyes and sleep as that felt worse! Later that day, I ended up going to the ER. They did some blood tests and whatnot, said I have BPPV and should just go away.

Here I am a year later. To keep this from being a novel, I will say, to sum it up that it did not just go away. And has not gone away. I have not had another night like the one in April last year. But I have never felt the same. Some days are better than others. My usual symptoms are…A feeling of floating, or sinking. Walls will move and sway. I will feel like I am moving too fast. Or like the world is swaying and spinning. Almost every day, I feel this to some extent.  I saw many doctors. Had MRI done and chiropractic. I tried many medications. 

So the point of this post....What actually helped me? 

Meclizine.- To start. You can get it over the counter. It helped with nausea. But not a whole lot with the dizziness. I tried the prescription anti nausea pills. But they give me headaches if taken too much. 

Sea sickness bands.- Huge help. And  I love that it is not a pill! Uses pressure points in your write to control dizziness and nausea. 

Peppermint essential oil- This is the biggest thing that helps the actual dizziness its self. I rub it behind my ears, and down my neck. 

Zoloft- I have social anxiety. The idea of being hit with vertigo at work or in a store or wherever. And throwing up uncontrollable was unbearable. I almost could not function. And in turn this anxiety made me even more dizzy. My life has improved about 80% since going on an SSRI. Talk to your doctor about this, might be worth it!

Eating better- Low Salt, no carbonated drinks. No caffeine. And overall avoiding foods that make me feel unwell. 

exercise when able- The more active I am, the better I feel overall. I go for brisk walks personally. Getting the blood moving can help clear my head. 

I was officially diagnosed yesterday. With Endolymphatic High drops. I pray it does not turn into full Meniere’s. But it feels good to have an answer. I hope this article helps someone out there. These things are the only thing that got me by. 

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  • Posted

    What's ssri? I'm glad you're able to manage this

    My anxiety it awful and making me even more dizzy

    Diazepam helps

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    • Posted

      Hi, 

      An SSRI is a Selective serotonin reuptake inhibitor. Used often for anxiety, and or depression. In my case I am taking Zoloft. 

      I was having so much anxiety about my condition, that it was (in my opinion) causing some of my symptoms. And I agree, it also seemed to make me even more dizzy. 

      Thanks.

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  • Posted

    I'm glad you finally have a diagnosis, but feel it should never have taken this long. I'm shocked that the ER diagnosed you with BPPV. I've had BPPV twice (most recently this year) and it never causes a non-stop spinning and falling sensation, even though it can make you feel vaguely sea-sick and unsteady all the time. In BPPV, the spinning/falling sensation only happens on lying down, getting up or otherwise putting your head into a position that starts the crystals moving. It only lasts max 30 seconds, and usually much less than that.

    I hope all turns out well for you, and the endolymphatic hydrops doesn't develop into full Ménière's.

    And thank you for posting. I'm sure this will be helpful to others.

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    • Posted

      Thank you! I feel like getting a diagnosis finally that makes sense has helped me feel a lot better, Even though it is not the best prognosis. I have come to grips with the fact this may effect me for a long time. Or forever. 

      Treating, and preventing symptoms is key in this case. It is hard for others to understand how you feel, and what you are going through. A huge support system is important as well. And with the things I listed, I have gotten to where I can do normal activities again. 

      I was unable to walk through a store, or go somewhere crowded. Any major visual stimulation was unbearable. I would not go to the movies, or a concert. I still can not do some things. But luckily can live a somewhat normal life. most days. 

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    • Posted

      Hi Steph,

      I note you mentioned in an earlier post that you felt your (very understandable) anxiety about your condition was feeding back into the condition and making the symptoms slightly worse. I think that's a very healthy approach, if I may say so.

      As a former nurse and now voluntary mental health worker, I've seen time and time again that anxiety can make many chronic conditions worse, and even mimic certain physical conditions. The latter is not true in your case - you clearly have a serious physical condition. However, I think your honest attitude will prove very helpful in your struggle to live with it. Too many people make themselves unnecessarily sick by refusing even to acknowledge the possibility that anxiety might be making their symptoms worse.

      I wish you all the very best.

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    • Posted

      Lily can anxiety make your head foggy? And fuzzy

      Every time I go out to try and mix with people it happens and then when I'm home it goes

      This all started for me when I got a spinal headache from a c section 11 weeks ago, they diagnosed bbpv but I knew it wasn't, I refused the blood patch

      Now I'm dizzy (not so much by taking diazepam) but the brain fog is still there

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    • Posted

      Hi Lynsey,

      Yes it can. The usual culprit in this case is hyperventilation (unconscious over-breathing) as it alters the electrolyte balance in the body. I sometimes hyperventilated when I got anxious when I was young, and still remember the feeling of dizziness and vague nausea - which is nothing like the vertigo I've subsequently experienced.

      However, you can't get diagnosed on a forum. It may well be that you're still suffering from the after-effects of the epidural as it was only 11 weeks ago. (I'm wondering why you refused the epidural blood patch by the way.) I think you need to be guided by your doctor.

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    • Posted

      No I don't have headaches just dizziness although that's stopped due to diazepam I think

      My brain just has fog

      That's why I'm thinking this is all anxiety now but there's just no way of telling

      I was once a confident person but have been knocked right to the floor

      And I'm scared I'll be like this for life

      I don't want the blood patch if I'm honest and I don't even know if that's what's causing all of this I'm just trying to self diagnose

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    • Posted

      Hi Lynsey,

      Glad to hear you're not having headaches any more. That's a good sign. You say you don't want the blood patch as if it's in the present. In fact, the blood patch is to stop the headache, so it's my understanding you don't need it now anyway.

      It does sound as if it's anxiety, which is hardly surprising. You had a bad time after the epidural and now you're having to cope with a demanding young baby. That's enough to make anyone anxious!

      I'm guessing you're still under the care of a doctor if you're being prescribed diazepam, so there's really nothing to worry about. Try not to give way to irrational thoughts about being like this for life. That's just the anxiety talking - and maybe a little bit of depression too.

      What I would say is try not to get stuck on the diazepam. It's a very difficult drug to get off if you've been on it more than a few weeks, and could even be causing the brain fog. Just cut yourself some slack. Don't expect to be able to do everything you used to do immediately, but push yourself a tiny bit every day. Lots of new mums feel like this, even if they didn't feel the same way after a first baby. Not all pregnancies, deliveries, babies are the same. (I don't know whether this is your first or not.)

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    • Posted

      Thanks for your kind words lily

      They've offered me the blood patch to see if it stops the dizziness

      But seeing as it's gone since the diazepam like you I actually don't think I need it

      I feel so alone ...I'm having counciling but that's not doing much good

      With my first son he's 4, I was amazing we did everything together and I'm living in the past all the time remembering how happy I used to be

      Both boys are ivf and I wanted this year to be the best ever and it's just been an awful start

      Does diazepam cause brain fog? It's worse when I go out of the house and have to speak to people I just want to run home and I'm having panic attacks when I go shopping too

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    • Posted

      Well, I can't advise you on the blood patch but can only say what I think.

      To clarify, I was a nurse and I specialised in neuro so I fully understand the mechanism of the headache you had immediately after the epidural. It was caused by leakage of the cerebrospinal fluid (CSF) which surrounds the brain and the spinal cord, which reduced the pressure around your brain and caused your brain to move downwards into the gap at the base of your skull, where the spinal cord comes out. You were probably told to lie flat to reduce this movement. I also know that the body makes up the shortfall in CSF in a week or so, completely curing the headache. This seems to be what happened in your case.

      I did my nursing when the dinosaurs walked the earthwink and I don't think blood patches had been thought of then. However, I try to stay up to date with new procedures and as far as I can make out, they're only useful for stopping the leakage of CSF in the immediate aftermath of the procedure.

      I've also never heard of an epidural causing brain fog lasting three months, and I'm having difficulty understanding how a blood patch would help now, or how the very small risks involved could be justified, when the hole in the membrane surrounding your spinal cord would have long since healed up. (If it hadn't healed, you'd still have that terrible headache.) However, my knowledge isn't up to date. If your doctors are still offering a blood patch at this late stage, perhaps it's something you might want to consider.

      I do know quite a bit about anxiety, panic attacks and hyperventilation, having suffered myself when I was young. The fact that the brain fog and dizziness only comes on when you're out of the house is strongly suggestive of hyperventilation. I'm wondering whether you ever get numbness or tingling in your finger-tips and around your mouth or stiffening of your fingers during these attacks. These are classic signs of hyperventilation too. I see you're getting counselling. Perhaps you could ask your therapist about techniques for controlling hyperventilation?

      Finally, if you're in the UK, have you tried googling the National Childbirth Trust? They offer a lot of advice and support to new mums on all kinds of things surrounding childbirth. Their slogan is "1,000 days" so you're still well within that limit.

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    • Posted

      Thanks that's a big help

      Yes I'm in Liverpool I feel like there's no help and I'm

      Crying out for it

      The NHS offer me half hour session once a week for 6 week so but it's very good to be fair

      I'll have a look at the childbirth trust

      The blood patch also scares me as I don't think this is caused by the csf now as. Since I've been taking Diazepam the dizziness has stopped which leads me to believe it's all anxiety related

      If the leak was still there would it cause brain damage in the long term?

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    • Posted

      Lynsey, if the leak was still there after 3 months you'd be way too ill to be posting on here! Try and put this behind you. It was a nasty experience and quite understandably left you very anxious, but you need to forget about it now, for the sake of your children, and start slowly putting your life together again.

      I'm glad to hear you're getting on with your therapy. The NCT will have forums where you can meet other young mums who are going through temporary problems like you.

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    • Posted

      Thank you

      I've rang them and left a message

      I'm 39! I should have more life experiences to let anxiety do this to me

      I was the strong one the one people relied on the one who was never scared

      Now look at me...I'm a mess

      I'm full of guilt for my four year old and I feel worthless

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    • Posted

      No need to feel any guilt Lynsey and you're certainly not worthless. That'll be the depression talking again. We all fall apart sometimes. I fell hopelessly in love at age 65 with a man I knew was completely unattainable and who wasn't remotely interested in me! How crazy was that? I went into meltdown for a few months, felt it was the end of the world, but we get over these things.

      It's these life experiences that make us stronger and wiser in the long run. Well, stronger anyway. Don't know about wiser in my case!rolleyes

      You will come through this, it's still early days. Work with your counsellor and be patient with yourself. Unfortunately we all have to go through the tunnel to be able to see the light at the other end.

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    • Posted

      Don't we all!wink But in the words of the old song: "Into each life some rain must fall". Or as it's sometimes put more succinctly: "S*** happens!" And I'm afraid it does. (I believe in calling a spade a shovel.)

      Hang in there. Send me a private message any time you want to. And try to hang on to your sense of humour. It's the only thing that's kept me afloat sometimes.

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    • Posted

      I found cognitive therapy helped which I was told about by a physchologist and also taking an anxiety tablet, kept those fears away when out shoppong meeting people etc.
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    • Posted

      Hello Lynsey, I hope you are well today. 

      I do believe that Anxiety can do all sorts of things to us. And make us feel all sorts of "off" 

      I have social anxiety specifically. And when it acts up, I get queasy, light headed, and a raised heart rate. I am sure it can be different for everyone.

      So I have been on SSRI (anxiety) medications since I was roughly 10 or 11. I also have a little bit of OCD, so I obsess about the things that give me anxiety. Thought I am sure it can go hand in hand for most people. 

      Luckily I know this about myself. And I know that since my major vertigo incident last year I was obsessing about it, and overall feeling worse and not healing. Luckily After too many months of suffering I went on Zoloft. And I can function again on my good days. And have learned how to cope and soothe myself on the bad days. 

      I hope you find something that puts your symptoms at ease!  

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    • Posted

      Lilly,

      I have had issues with my anxiety since I was very young. And luckily have learned to recognize when it is getting out of control. And I knew that it was really holding back my progress with my condition. 

      at the time I was not on medication for anxiety. As life was going pretty well, and with my emotional support animal I felt I had a good grip on it. (I don't know what I would do without my dog!)

      But with such an earth shattering experience that made me feel so out of control. I needed that extra help of a medication. And after finally asking for one after too many months of suffering. It really turned my progress around! 

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    • Posted

      That's great that you've found something that works for you

      Diazepam is my only saviour ATM

      But I know for sure they won't give me them again this week as I've been on them 3 weeks with propanadol and amitripiline which don't do a thing

      Did u experience brain fog or a fuzzy head

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    • Posted

      Yes. Almost constantly when I was at my worst. 

      Maybe talk to your doctor about a more constant anti anxiety medication. If it is not good to be on diazepam long term. I have never taken it so not sure. 

      Zoloft is what I take. It is not going to give you fast relief if you have a major anxiety episode. But it will keep you more level from day to day. 

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