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

Posted , 36 users are following.

mary90940
mary90940

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

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  • chandra71
    chandra71 mary90940

    Posted

    Hi

    I too suffer from same kind of issues. I was diagnosed as Early Meniers. I have tinnitus ( constant sound and fullness in Rt.ear) and balance issues for last one year. I am 46.

    Balance issues are more severe in places like malls, busy streets etc. and while walking I feel like to fall down at any point of time. Issue is severe while walking, 

    Used to get migraine once in a while ..Contacted ENT, taken all tests and taken some medicines too. But no improvement so far.

  • matt48099
    matt48099 mary90940

    Posted

    I have the same symptoms, i  getting very frustrated because I have been to my primary doctor, 2 neurologist, ent doc, hadn’t multiple blood tests, 3 mri’s, X-ray, nerve (electrical) test, hearing tests the list goes on. I have chose to go the unconditional route now so I have gone to holistic person.  They said I have Lyme in my system, I am currently taking drops and natural substances for 3 months now. I have started taking antibiotics in the past 1.5 weeks because I have felt the Lyme medicines were not working well. I have been eating totally organic and gluten free the past 2 weeks, I have lost 20 pounds, but still no better.  I am 50 now and I should not have this problem already in life. I am in pretty good health. Help this balance thing is very disconcerting.
    • joyce70589
      joyce70589 matt48099

      Posted

      Matt, you don't mention going to a Neuro Physcial Therapist. I went and the first time doing the BPPV maneuver got relief. It has come back but I continue to do the maneuver at home. So sorry you continue to have issues. Yes, it is very upsetting to be off balance. 

  • rocksolid
    rocksolid mary90940

    Posted

    You may want to go to a cervical chiropractor. If you C1 and C2 are out of place it can cause these issues. Make sure to go to a cervical chiro, not an ordinary one. Google C2 and dizzy and see what comes up. 
  • dizzyear
    dizzyear mary90940

    Posted

    Hi Mary,  I can see this an older post and not sure if you have any updates.  I wanted to let you know that there are more tests that can be done to help diagnose your imbalance symptom.  It does seem that once a Dr sees anxiety in the patient's file, they tend not to look at other causes of dizziness.  From what you have said, the imbalance feeling seemed to come first.  It can be hard to separate the two dizziness and anxiety.   I happen to have a condition that causes imbalance dizziness (no anxiety thankfully).  I had this symptom for many years before getting diagnosed.  Eventually, I developed some additional symptoms that helped with the diagnosis.  I would push for some additional testing.  Sure the tests can cause some anxiety.  However, the tests can help to rule out any serious conditions so you don't have to worry about them.  Most things that cause imbalance dizziness are not dangerous, just super annoying.  It is common with imbalance dizziness to get an MRI from your ENT or Neurologist.  If you haven't already, it would seem to be a good test to start to rule out possible conditions other than anxiety.  You are welcome to message me if you want to chat more.  FYI,  I do a lot of mountain biking and it is about the only time I don't notice the imbalance dizziness as much.  Hope you keep up with the running.  I think exercise is very helpful to deal with the stress.

    • ohnmar1299
      ohnmar1299 dizzyear

      Posted

      Hi,

      I found your replied message to Mary and it is very helpful to me. I am wondering can I chat you if you are available. I have been with those off balance dizziness for one month and looking for options or treatment make me feel better. thanks so much.

    • BryanLA
      BryanLA dizzyear

      Posted

      Hi Dizzyear,

      You didn't mention what the condition was that caused imbalance/dizziness. Can you edcuate us a bit?

      In all of my research the only long-lasting condition that causes imbalance and disequilibrium seems to be anxiety or PPD. (Which is a psychological state of long term balance issues due to anxiety/stress/emotional factors.)

      What condition specifically are you referring to?

  • ohnmar1299
    ohnmar1299 mary90940

    Posted

    Hi Mary,

    I have exactly same thing happened to me, I am looking for treatment and anything that makes me feel better. Any thoughts??

     

  • daradal666
    daradal666 mary90940

    Edited

    Hi,

    I have  something similar to TS. I had a severe folic acid deficiency a few years back, at first they thought it was B12 which is similar but later ruled that out. For a few years I took both Folic acid and B12 pills every morning. Now just down to Folic.... And i have to take it for the rest of my life...

    My issues started with feeling extremely tired, sensitive to light, vibrations in legs, trouble walking and imbalance, my feet especially my left felt like walking on pillow or trampoline, trouble standing still because of swaying....

    Of course at first i though it was stress/anxiety later founding out it could be nerve damage from my deficiency. However that has not been establised, i still have these symptoms in different periods and my doctors call it stress/anxiety.

    I have found something called MdDS https://www.webmd.com/brain/mal-de-debarquement-syndrome#1-2. Some of the symptons are similar or the same.

    Im not sure what I have is actually MdDS because i think my issues like i said started with the Folic. Because one can walk around with deficinency for a long time without noticing it.

    Everytime I have a good period with no or less symptoms I forget about the bad period. It was just a few weeks ago i said to myself, omg it feels like im almost back to normal this is the best ive felt in years. Now when some symptoms are back again I think to myself, maybe i was just in a better place and not thinking so much about it.

    I have also found out that many of the trampoline feelings is related to my lower back or shoulders. When I slowly bend my back or move it in one direction it feels like a "gearwheel" and I can feel the trampoline feelings. That is why i when i wash my hands i get these feelings.

    Anyway this response didnt come out the way i planned but its nice to see im not alone.

    Read the link below for some good advice.

    Get a good night sleep. Less stress. Excercise, take a bike ride instead of walking. Depression makes it way worse.

    https://www.healthboards.com/boards/ear-nose-throat/763114-unsteadiness-disequilibrium-walking-trampolines-my-story-how-im-coping[b].html

  • TrayC1970
    TrayC1970 mary90940

    Posted

    Same crazy symptoms here!!! I can’t stand it! I don’t think people around me take me seriously and I feel just awful all the time! Humidity makes me feel worse! I feel like a recluse...I hope to see a dr. about these symptoms soon....somethings gotta give...would like my life back! Good luck to you all!!! 
  • BryanLA
    BryanLA mary90940

    Posted

    My condition is the same... boaty head, same balance issues. Some dizziness but not vertigo.

    Can ebb and flow. Comes on more when I am stressed (possibly) and definitely when I do heavy lifting workouts.

    I've had stress disorder (anxiety etc) for years. I've had this in spells. Then one day I was doing some heavy workouts about 7 months ago... got very dizzy and it just stayed. Balance issues remained. It can be so bad my feet hurt from it. Usually I'm very functional and I'm getting on with life. Most days are good, but at times it can be hard to accept of course.

    I definitely believe it's related to stress and anxiety but I must admit, the lifting aspect makes me a bit curious. I've looked up ear disorders and nothing seems to match. Bloodwork is fine. ENT had nothing to say. I don't think it's a perilymph fistula or anything of that nature because I don't have those symptoms.

    Curious if anyone has felt this in any way related to lifting for them? (Either came on with lifting or gets worse.)

    Hang in there folks, it'll get better.

  • raj31735
    raj31735 mary90940

    Posted

    Hello mam,

    I'm 20 years old male and I'm having the same issues as you are.

    I got a CT scan of my brain and it came out clear, went to Ent, he said I was normal.

    But inside I feel very annoyed by this, I don't feel normal and it's very depressing.

    I don't think I had any anxiety issues prior to this.

    It's been 8 months now.

    I have some itchiness problem can that be somehow related to this?

    And I constantly fear that I may have any terminal disease.

    Any updates?, please reply

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