Off balance and feeling weird when walking for 2 years, not running

Posted , 36 users are following.

Hi there

I am hoping someone can help me out with debilitating symptoms that have been going on for almost 2 years. Just some general info about myself: F, 26 years, normal weight, vegetarian for 20 years. I'll try to keep the story short but there is a lot to explain, so here goes nothing...

My health problems started in the beginning of 2016 where I would feel off balance/dizzy mainly when walking which got worse when I would try to look around a lot. The feeling exactly how I felt is difficult to describe but included feelings of swaying, sometimes caught by surprise of my own movement, weak legs etc. Went to the doctor, did some usual tests and blood tests (whole blood count, iron, thyroid, liver, kidney etc.) and everything came back clear, but slight tachycardia at the time (90 bpm rest or so) so I was sent for heart tests (echo, stress test, ecg's, 24 h Holter) but nothing was found so my heart was cleared at the time. I should mention here that I did mention being a vegetarian and questioning my B12 levels, so these were checked too, but the doctor diagnosed them as being fine (which turned out to be a misdiagnosis 6 months later, at levels of 189...).

Time went on, about 6 months of walking around with these symptoms, when things really got worse and I would feel very faint at times, super unbalanced when walking, very anxious, sweating a lot and chest tightness. Revisited the doctor, all the tests again were fine, except my B12 which dropped to 98 at the time. Was put on oral cyanocobalamin (4mg/day for 2 weeks and from then on 1mg/day).

Despite having B12 medication things regarding my balance remained the same or got worse at days. I think it is during this time of all the worrying that I also developed an anxiety/panic disorder. Brought myself 3 times to the ER thinking something was massively wrong, because of my off balance feelings, extreme feelings of being uncomfortable in my chest (very warm, tight, heart palpitations often happening after lunch). ER did the usual tests and found nothing but high heart rate which was attributed to it being a panic attack. 

That brings us to now, where I am seeing a psychiatrist for my anxiety disorder, but I believe there is a medical underlying condition that is not detected yet. During the last year I got too scared to work out thinking my balance got worse. Recently though I forced myself to go back to run 5k's which I loved doing before all of this happened. And this is when I got surprised: When I run I don't notice ANY of the symptoms. My body feels strong and I am able to pull of a 5k in about 26 mins, which is pretty decent for me considering I have not worked out in about 10 years. However, as soon also here when I am done with the run and start walking again this horrible off balance feeling is back! I can't stand this any longer. The off balance feelings I feel are always there but the severity degree is very dependent on the day or time of the day. Usually a lot worse towards the end of the day and also in the weekend which are often accompanied with some weird eye strain/headache. Also seems that when I have had bad anxiety/an attack it takes a toll on my balance that requires a couple days to go back to more normal levels, truth is the balance issues are always there in some degree or another.

I am just hoping to find answers to what could be going on. Could it be permanent damage from my B12 deficiency, of course also scared of MS or some other undiagnosed disease or could it really all be part of my anxiety disorder. Are there any of you that can find themselves in these symptoms/have any tips/advice? 

I'd greatly appreciate any input as it seems I can't enjoy life like I used to and want my old normal carefree life back...

Thanks a bunch

Mary

 

2 likes, 56 replies

56 Replies

Prev Next
  • Posted

    Have you gone to a Ear Nose and THroat. My dizzy spells come and go and each time I do the maneuver the Neurologist Physical Therapist taught me until there is no more dizzyness. So, far so good this time.

    It is the epley maneuver or repositioning maneuver used to treat one common cause of vertigo, benign paroxysmal positional vertigo of the posterior or anterior canals of the ear. I do the maneuver over pillows so my head is tipped way back up-side-down. I am usually effected on the right side only. So, I start by sitting on a bed ( the side of the bed you lay on depends on which side you start on, so mine is my right side so I lay on left side of bed with feet toward headboard so I will end up sitting straight up on that side of bed...... put two pillows behind me so when I lay over my head is touching bed at a angle. Then turn head to the side effected and lay over pillows, if room in spinning hold position for 30 sec to a minute after spinning stops. Then without raising your head turn to other side, same thing after spinning stops hold for 30 sec to a minute. then turn head completely toward bed also hold after spinning 30 sec to a minute, then sit straight up. Do a 2nd time or as many times as it takes for the spinning to stop. Mine usually is gone after one time.

    I was told maybe I had a inner ear infection. I made an appointment for ENT but didn't keep the appointment since at the time I didn't have any dizzy issues.

    I wish you all good luck in finding something that helps. I was also told to take motion sickness pills, they are easy to carry and take.

    Joyce

    • Posted

      i am glad that you found a solution to your problem.

      i have been to the ear,nose and throat Dr.

      i have been to many Neurologists(4)

      along with many other doctors, i am still searching for my answer.

      thanks

      MATT

  • Posted

    so they taught you the epley manuever? It puts the ear crystals back in place. Over the last 2 years I have done that each time I have vertigo. Usually only comes on when laying in bed rolling over and putting my head back too far.

    • Posted

      that is not what i have. i am still searching. i know it's not VERTIGO i had that checked.

      thanks

    • Posted

      Have you considered your neck? Look up cervical neck and dizzy.

  • Posted

    Hi everyone! So I was in a similar way, dizzy, lightheaded constantly, headaches, chest pains, feeling like I'm on a boat for 2 months. It was horrible, ruined my Xmas! I took many trips to different docs and hospitals as I was really worried, especially with chest pains. I had full body checkup, numerous blood tests at different hospitals, CT scans, Mri scan, ENT docs, everything you could think of I had them test me for. I live in China so healthcare is not the best but I can pay and get these tests done in a few days. Anyway I got diagnosed from different docs with bppv, vertigo, anxiety, stress, vestibular migraines, all gave me different medicine which seemed to make me worse 😦 so after looking online for hours like the rest of us which I think makes the problem worse with anxiety, I ended up booking a trip to a chiropractor. They gave me a deep massage in my neck and shoulders for 30mins and then they cracked/adjusted my shoulder blade twice and the same to with my neck 4 times. I stood up feeling a little worse but then after 10 mins or so I started feeling better and less dizzy!it's 2 days after the trip but I feel 80% better and so relieved. The chiropractor said my neck and shoulder muscles were very tight and this was giving my neck a hard time. I couldn't believe the relief I felt that day, from a few weeks ago thinking I was gonna have a heart attack or my head was gonna explode, waking up dizzy every day had now gone. I would never have guessed this seemingly small problem could cause such a big affect on my life.

    I hope this could help a few of you guys!!

  • Posted

    Hey James,

    Glad to hear you found some relief. I'm going to look into some massage and neck work.

    When did you start feeling off-balance?

    Do you remember how it came on or what might have caused it?

    Do you suspect you are also dealing with some stress/anxiety in the mix?

    For me, I've had a stress disorder for years. But it had been pretty well in check before this balance/dizzy problem started in April of last year. Even now most days I'm doing OK, but the boaty head/balance stuff can ebb and flow and make days harder.

    Do other people find that it ebbs and flows, better some days... worse others? That's a fair indication that it might be stress/anxiety/mindbody related.

    Hang in there everyone, things will improve in time.

    • Posted

      Hi Bryan,

      I remember briefly early 2018 whilst tilting my head back washing my hair or in the gym leaning my head side to side that I would get a sense of lightheadness. Then in September 2018 whilst in bed I got really dizzy like I was going to pass out and my balance was really off. I went straight to hospital but they gave me the all clear. It seemed to dissappear on its own after 6 days of dizziness. Then mid November it struck again whilst walking. I was constantly lightheaded all day, normally worse whilst not moving or in bed. I had to sleep sat up most night as lying down i would be too dizzy.

      Yes I believe anxiety also played a part in this and over thinking that I had a serious problem made matters worse.

    • Posted

      Sounds like vertigo room spinning....Dr .sent me to neurology physical therapy .

      They taught me maneuver for Benign paroxysmal positional vertigo.

  • Posted

    check with a neurovisual specialist. my daughter had similar symptoms and we went around and around with tons of doctors. she was dx with vertical heterophoria. misalignment of her eyes. she is getting better.

    • Posted

      i was recently at WILL's eye in philadelphia and got the all clear, thanks for the thought and good luck with your situation.

    • Posted

      it is a neurovisual eye dr we went to neurologist and they found nothing

    • Posted

      Do you mean the vertigo? Dr suspected it by room spinning. Inner Ear Crystal's get out of place. Physical therapist confirmed when did epley maneuver Benign paroxysmal positional vertigo

  • Posted

    Hello Mary, have you ever had any improvements to changes to this situation? Our stories are very similar, I just posted mine a few minutes ago here. Any updates or reply would be greatly appriciated!

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.