Constant rocking/swaying feeling for 7 weeks and counting
Posted , 12 users are following.
So my illness began about 7 weeks ago now. Initially I experienced two seperate short occurrences of a strange rocking swaying sensation... almost like someone had pushed my brain very hard inside my head so it felt like I was moving but I wasn’t. The first two times it happened were both after hiking, but both times I had been hiking at very low elevations. Then about a week after the second occurrence my symptoms hit full on and haven’t gone away since. I wasn’t sick beforehand, I had no allergies, no migraines, no concussions or head traumas, I had flown a month earlier but had no issues during or after the flight... I felt well the night before, and then wham, it hit and I’ve been feeling like I’m moving ever since. Unfortunately I have been off work for almost the entire 7 weeks and will be unable to return to work until this mystery is solved. I feel like my life has been put on hold. I can’t work, exercise, drink coffee, have a glass of wine... even trying to meet a friend for support is difficult because it’s hard to concentrate on being social when your whole world is moving. This obviously all leads to an insane amount of anxiety and sadness, constant tears and frustration. I want my life back and all the testing and trying to figure out what’s going on is just taking way too long. I’m hoping someone sees this and maybe has had similar symptoms and got a diagnosis or a cure? It’s a long shot but I’m desperate to get my life back. If anyone has any advice or ideas or similar experiences please let me know! So read on for more details on my symptoms, testing and treatments I’ve had so far.
My symptoms include:
- constant feeling of swaying back and forth, front to back and sometimes up and down with the feeling that my knees will buckle or the ground is falling under me. It’s like being on a trampoline or getting off a carnival ride almost all the time. But having said that it is NEVER a spinning sensation.
- the above symptoms are a bit better laying down, I feel them sitting up and they are the worst when I stand in one place, for example to do dishes, or the absolute worst when I walk, especially downhill.
- the “dizzy” symptoms described above are always there to some degree but they vary with how badly I feel them throughout the day. The only time I fully don’t feel them is when I’m sleeping but I have woken up a few times since this happened feeling like I’m moving laying down.
- the more physical activity I do throughout the day the worse the symptoms get.
- the more I look at screens, be it computer, phone or TV the worse the symptoms get.
- headaches have become an every day occurrence. The worse the dizziness the worse the headache. It’s usually in the temples or sides and back of my head.
- there is often pressure in my head near the temples and sometimes near my left ear.
- I have ringing in the ear in the left ear. It only comes occasionally and nothing in particular seems to trigger it.
- I have had difficulty with my vision being blurry and little spots or shadows in my vision. Difficulty focusing on things close up, especially if they are moving.
- It has been very difficult to concentrate. I often have a hazy feeling or head in a fishbowl feeling. Almost like I’m super hung over and my body and brain just aren’t firing on all cylinders.
- it is difficult to be in really busy places like malls or restaurants or crowded sidewalks.
- my muscle strength has been greatly diminished over the month and a half this has been happening. There are many days where I can’t even lift an 8lb weight 10 times without my arm muscle going into a spasm. I have been attempting slow and low rep hand weight lifts in an attempt to not completely lose all aspects of my fitness while trying to figure out what is going on. However any attempts at walking for any distance or weights or even physio exercises leave me drained with muscle cramping, numbness/tingling and I often have to sleep after to recover.
- driving is surprisingly completely unaffected. In fact if there was a time where I actually felt like maybe I might not be dizzy it would be when I’m in the car driving. This seems to make no sense whatsoever to me. You’d think the motion would make it worse, but it almost seems to override whatever is going on with my balance issues.
Treatments and testing so far
- Initially I was told it was a viral inner ear infection - treatment with oral steroids and serc. No relief.
- next told it was bacterial inner ear infection. 10 days on antibiotics. No relief.
- next blood testing to rule out anemia and migraines. Given migraine medication. No relief.
- saw an ENT who feels Ménière’s disease is likely. Received a steroid injection directly into the ear. No relief. I have an appointment for another injection soon.
- currently waiting on an MRI, a 2nd opinion from a different ENT on Ménière’s being the cause and also waiting on an appointment with a balance specialist.
- acupuncture was tried twice, no relief.
- an eye exam has been done. No signs of binocular vision dysfunction and the optic nerves tested perfectly. Nearly 20/20 vision.
- I have been seeing a physiotherapist for balance exercises, currently awaiting an appointment with a new physiotherapist who specializes in vestibular rehabilitation therapy.
- I have gone for multiple massages for my neck and head as well as cranial sacral massage, all providing no relief.
0 likes, 33 replies
christine_35821 Mcg0586
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Mcg0586 christine_35821
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Thanks for the reply Christine! I saw my ENT today and he was once again very discouraging. I asked him if there were any doctors more specialized or more highly trained in ear disorders than an ENT that I could possibly see and his response was simply no. I have a second opinion appointment with a different ENT next week. Just curious, were you diagnosed with Menieres then? I was on betahistine in the first weeks when we still thought my issues were being caused by a viral inner ear infection. It didn't seem to do anything for me but I was on a much much lower dose than you. That's so great that you are having such positive results with it. I hope you can keep weening down the dosage!
DizzyLizzy68 Mcg0586
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Mcg0586, it sounds like u could have vestibular migraine. I know u said u were put on migraine meds, but the sad fact is that many either don't take a high enough dose of a medication, or don't stay on it long enough (up to 3mos!) Google dr. Hain and the words "dizziness and balance". You will find all u need to know and more about the various causes and treatment of all kinds of dizziness.
christine_35821 Mcg0586
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Mcg0586 DizzyLizzy68
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Thanks for the tip! I'll google that!
DizzyLizzy68 Mcg0586
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Yes it is dizziness-and-balance dot com
mark_93177 Mcg0586
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Hi, Mcg0586, I completely understand what you are going through as I am in the same position as you. My started in 2007 and last for 4-6 months before all symptoms went away and didn't experience any symptoms until 2015 when I woke with the room spinning and nothing until March this year and that last for about two weeks but only experience vertigo almost everyday but last for 10-15 sounds but I had to rest my head after as my balance was out of it. the balance problem went on for about one month and it got better. I have never been on any drugs for it even though GP gave me betahistine to take whenever I was having a vertigo. I have seen three ENT's and first two did all the test there is to do and all came back normal. The 2nd and the 3rd one said I have BPPV. I have always have problem with my neck and whenever I had the vertigo attack, it always seems to be cracking a lot and it was locked for about a week during my recent attack and I told me GP that we should have an X-ray done on my neck and what did I know, I have a problem with my C5-C6 which they call Neck Arthritis. I just did MRI on my neck and I have two at the hospital requested by the Neurologist that I saw during my last attack. I will update when I get my results. From what I have read here, betahistine takes time before it kicks in. Also please if you are taking any Groval, you might want to stop taking it because it made my worst and I think I blame it for my lasting longer that it this time.
Regards
Mark
Mcg0586 mark_93177
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Hi Mark -
I'm glad they have finally found the issue in your neck. I hope that once the MRI results come back they will be able to provide some treatment so you won't have to experience the vertigo spells anymore, or at least less often. Thanks for the advice on the gravol, I haven't been taking any and will keep it that way.
jcharnock Mcg0586
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Hi,
Sorry to hear you're going through what many of us here are. Ive had many test and without going through everything, the doctors have diagnosed me with vestibular migraines, it's very similar to menieres but it might be worth a google. Also at the same time i was diagnosed with reflex syncopy which is when your blood pressure drops in certain situations, stress, dehydration, this list goes on. Again, maybe look into that as a possibility. I keep hydrated (about 4ltrs a day, reduced my salt intake (about 2mg), cut out caffeine, trying to think of anything else. Thays my experience, just wait on balance rehab. Hope that helps at all
valerie08916 jcharnock
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jcharnock valerie08916
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Yes im still working, ive had a good fee weeks off this year with it though, luckly my work are quite understanding. It seems to of settled at the minute to a point where im able to get back to some sort of normality, but as ive said above i just have to do certain things to keep the attacks away and feeling to feel relatively normal.
jcharnock valerie08916
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Sorry missed a bit off, im not sure about disability benefits, you'd have to look into it. I would ask the doctor and citizens advice to see what they can suggest.
valerie08916 jcharnock
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Mcg0586 jcharnock
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mark_93177 jcharnock
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reflex syncope !!! yep I have the same thing too. it scares the hell out of every time it happens but I don't notice it when I am very active
jcharnock mark_93177
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