8 Months and still no improvement!

Posted , 6 users are following.

Haven't been on this site for some time now, I thought that things were looking up so I decided to take a break from Dr Google and searching the Internet for answers to questions I have asked myself over and over again but never got the answers I was looking for and I unfortunately am still searching for that one answer that I really don't think exists 😢

It all started in September last year 5 months after having my second baby, I was laying on the sofa one evening and went to get up but couldn't, I was dizzy beyond belief, my eyes wouldn't focus, my brain felt like it was swishing in my head and I panicked big time, I felt like I was really going to die, everything was drawing in on me and it was getting dark, my eyes were wobbling and I just couldn't see properly!

I ended up that night at out of hours doctors in tears as I didn't know what was happening apart from I was frightened, the doctors thought it was some kind of virus or ear infection so sent me on my merry way with antibiotics and some tablets to take for the dizziness, however these after 3 days didn't work at all, there was zero improvement, I managed to get to the docs again and they changed the tablets still convinced it was viral?! This time they had given me betahistame which I had a reaction to and ended up this time in a&e having to take tablets to counteract the reaction!! Nightmare.

The dizziness unfortunately persisted longboard term but also along came new symptoms such as, headaches, neck pain, nausea, pulpertations, sweats, night sweats, shakes, clamy hands but to name a few, so of course the doctor now put it all down to stress and anxiety delayed I might add of having a baby. To me it was a lame excuse as apart from everyday life stresses and strains I wouldn't say I was anxious the only thing that made me anxious was how I felt not the other way round but you could say maybe I was the reason I was feeling the way I did as I was feeding my anxiety!!?

Anyway fast forward 8 months and apart from a week where I felt OK not much has changed, I am still dizzy/lightheaded and I still have all of the above symptoms and before you ask yes I have had tests upon tests with no conclusion as to why I feel this way, I take anxiety tablets, beta blockers, seen ent 4 times, had a balance test, had physio, acupuncture, been to dental hospital, had B12 jabs, taken folic acid due to being low, had numerous bloods, had contraceptive implant removed, seen a chiropractor, had 2 ct scans and 1 mri scan, had 2 ultrasounds on my neck, had counselling, had echocardiogram, worn a heart monitor for 24hrs, had bp checked, ecg and blood sugar, you name it I've pretty much had it.

I am not saying that my doctors are useless as they are trying to eliminate things slowly but I am no closer to finding a cause to my dizziness, most days it debilitating you just don't want to move as if you stay where you are you don't get those horrid feelings, evening doing simple things like the dishes makes me lightheaded, there are days I crawl on my hands and knees cos I don't want to feel this way, it stops you enjoying the things you used to take for granted its a horrible feeling, I know that with all the tests I should feel confident that I don't have some nasty illness that some not so fortunate people have and get on with life but I'm struggling, daily tasks become a chore! I get really stressed and anxious because no-one has the answers as to why this is happening to so many of us.

I recently found a lump on my neck to which I have had checked out and was told it was just lymph node doing its job but now have become obsessed that I have lymphoma which is obviously fuelling my anxiety even more, I haven't once said that I don't have anxiety issues but I have said that it's not anxiety causing the symptoms it's the other way round.

I have a neuro app coming up in 3 weeks and I am in a way hoping he might have some more answers or explanations as to why this could be happening, I know that dizziness on its own is not an illness per-say as so many things can cause it but my issue is finding out what is causing it, I wasn't like it a year ago so something must be wrong.

ENT said it was some form of vestibular neuritis but like he said it was basically them saying they don't know what it is as VN is just used as a general overall diagnosis when they can't pinpoint exactly the cause.

I know there are loads of us out there that are battling with the same condition and we are all still searching for that one answer do you think that we will get it? I hope to god one day I do as living like this is seriously no fun at all xx

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5 Replies

  • Posted

    I totally understsnd. They diagnosed me with VN... have you tried Vestibular Therapy? It is supposed to train your ears and brain and vision to not be dizzy any longer. If it's not brain or auto immune disease then it should be damage to your inner ear... so they say... I've been feeling off and dizzy for 6 weeks now ..therapy was helping until I decided to go for a 2 mile walk yesterday and got home and felt sooo off. But I may have pushed myself to hard idk. I think a lot of people are struggling with this as I read through posts... and a lot of time there are no answers unfortunately sad

    I hope we both get better!!

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  • Posted

    Hi Emma. I haven't been on in a very long time either. I wish I knew what to tell you. I have continued to improve so there IS  hope. The physical therapy along with hearing aids and the pushing through when I felt awful worked. I don't have very many dizzy spells anymore and they are mild compared to when I started. If I had to choose, I would say it was the hearing aids that made the biggest difference. I'll be thinking about you. 
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  • Posted

    The symptoms your described initially clearly involved nystagmus due to vestibular dysfunction.  I assume the MRI was normal.  It is likely that it was vestibular neuritis, although corticosteroids is usually given in these cases for very short period of time.

    The brain normally compensates for the insult.  In your case, it is possible that the brain has not compensated well enough, and you continue to have disorientation spells.  If all the above is true, and you need to discuss this with an EXPERIENCED doctor in matters of neurotology, vestibular rehabilitation is usually suggested.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

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  • Posted

    Hi Emma,

    Has anyone mentioned vestibular migraine VM or migraine associated vertigo MAV to you? They are basically the same. You may have had migraines in your life and didn't realize they were migraines, but just thought really bad headaches "really bad" headaches. That's been my personal experience as I look back to even years ago as a teenager There's a book called Heal your headache 123 by Bucholz, very informative. Chronic subjective fuzziness CSD also known as postural perceptual persistent dizziness PPPD can also be a component inside if MAV or VM. Have you had only one vertigo episode? How long was it? Room spinning, nystagmus, nausea? I've had three all about 10-20 minutes (I think?) and the last one left me with the everyday dizzy (not vertigo) off balance feeling with self-motion, walking, turning, watching certain types of motion, busy crowded visually stimulating environments, and to much reading/screen time. But, I feel better if I can sit even better yet with laying down. And, ironically, feel better (dare I say almost normal?) while driving. Been 9 months now with these symptoms and I have no doubt anxiety plays a role. Have done and retiring to vrt. Tried a very very short trial of Effexor and had to stop after 3 days, bad side effects and then what I believe we're bad w/d effects even though I too extremely small amounts of it. I would say, stay completely away from it but, it has helped many people. Though, I've heard withdrawing from it when your ready to come off can be awful. I've heard the same about Paxil. Both are snri's. A lot of people have success with Zoloft or nortryptiline, or vitamins; high doses of B2, CoQ10, magnesium. Anyways sorry for the long post, just thought I'd choke in because your post resonated with me. Wish you luck to finding an answe soon (for both of us).🙂

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