Constant rocking/swaying feeling for 7 weeks and counting
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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
benjamin80326 Mcg0586
Posted
Hello McgO586:
My heart goes out to you. I've gone through some similar experieces you're going through. My Mernerie's disease started yearz ago and saw a few ENTs resulting a myriad of tests: ultra sound of carotid artieries, CAY scan of temperal bone, MRI and MRA of brain, and MRI with dye in the neck. All proved negative. At the end of all these tests my ENT doctor said there was nothing he could do further. When asked what I should do next he said he had no recommendations, perhaps I should go to the U of Washington and see if there was anything they could do. I sought help through my endrinologist who found an otoneurologist in Seattle who has been going through various procedures to address my meneire's starting with water pills, a lymphatic sac decompression which seemed to work for a year and a half, but the vertigo returned. His next step was gentamycin shots in the ear which appeared to work initially, but after the 4th shot last month there was some relief the first few weeks but the episodes of vertigo has returned with a vengeance, especially last night with extreme spinning, nausea, thoughts of losing control (had to take valium). It lasted for a few hours. At my last visit with my doctor he explained to me that perhaps the next step would be a labrythectomy which is efficacious with about 95% of patients.
I realize that this a long history of my expeieces, but it's purpose is to share with you that many of us go through the same ordeal you're having. It's easy to say be patient, but perhaps your next step should be seeing an otoneurologist who has advanced training in Meniere's disease as compared to an ENT. Don't wait!
Good luck to you, and God's blessings.
Ben
Mcg0586 benjamin80326
Posted
Hello Ben,
Thanks so much for the response. It is definitely comforting to know we aren't alone in the symptoms. I'm sorry that the treatments have not been working well for you so far. It sounds like a rollercoaster of emotions. I really hope that the labrythectomy will help. I will ask my ENT this coming week about the possibility of seeing an otoneurologist.
Thank you again and I hope you find some relief soon!
C