Many of the symptoms you speak of can be contributed to or be made worse by VDD (vitamin D def.)
One of my worse problems was, like you, a severe off balance feeling. I felt like I had a constant rocking feeling or like I had drank too much. My numbers have been up for almost a year now. The symptom of off balance is much better, but unfortunetely not gone. So there must be another cause, but like you I have been tested and scanned with no real answer.
A place to look at what others have listed as their symptoms upon diagnosis is in this group somewhere. It will give you a great list.
There is a long road ahead of you to get your levels back up and to stay up. You will see most of the answers and postings on levels in the North American form of ng/ml instead of the nmol/L.
3000iu of OTC Vitamin D is a good start, however it may take more to get you to optimum ranges. I currently take 5,000iu daily and will have to for the rest of my life if I want to maintain a good result.
Keep your chin up and know that you are not alone.
I have that off balance feeling right now. My original symptom was muscle twitching which started in late Dec last year. MRI and EEG were normal and I insisted on a vit D blood test. I found out I had vitamin D deficiency (level 13) around late Jan. I was taking roughly 3000-5000 IU's a day for about two months and got my level back to 45 so I decided to taper the dosage down and phase it out in a week or two . However then a month after that blood test a new test showed my level to be down to 30, so now I'm back to around 2000-3000 IUs a day. Ignoring the tests for a second, the muscle twitching is much better than it was. However, for the last 4 weeks I've had that off balance, walking on a boat, elevator stopping feeling. It's aggravated when working on the computer. I also think it gets worse when I'm at shops or restaurants. I feel like there are times when my brain is struggling to process the visual info my eyes are taking in. I also noticed a little hypersensitivty to certain sounds. I'm a little confused about why this symptom began 4 weeks ago when my level was around 30 (borderline for 'normal'). I'm wondering if it's maybe related to a magnesium deficiency or some other vitamin/mineral imbalance caused by the vitamin D supplements I've been taking. gadgetsmidnight - did you also take magnesium? or were you able to rule out any other potential causes? How much better did your symptoms get over time (and how much time)? Mine is not HORRIBLE in that I'm not falling over, but it is affecting my work and ability to focus.
I am of the opinion that the "off balance feeling" is not caused by the VDD, but can be influenced by it. My levels have been in the 50's for a year (taking 5000iu D3 and will probably have to take it forever). The symptom has improved greatly, but still is a daily occurence. Now is this because my numbers are up or is it after 3+ years of the "off balance" that I have finally gotten used to it? Who knows. I do have a Vitamin B12 defeciency, but it is stable with every 2 weeks of B12 1000mcg injections.
I tried to take magnesium, but everytime I tried to add it I had terrible stomach issues. So I guess I could have a magnesium issue...
I have been to ENT and Neurology and they cannot figure out why the off balance feeling.
I am more sensitive to sounds and I also notice that when I am big stores I have more problems. ie Walmart, grocery shopping etc. I have fallen several times, but now walk with a cane. That has helped alot. Granted at first I was hesitant to use it due to pride. (I am not that old) I had to come to grips of that pride and not wanting any additional doctor visits.
I did have to go on medical leave for a few months until I could get my focus back. (I felt foggy brained, if that makes sense)
If you decide to take the magnesium, let me know if you get rid of the balance issues. Plus if you get a good diagnosis from a doctor regarding it, I would love to let my physician know, so he can explore it for me.
Thank you so much to everyone for responding. I feel for all of you so much, and so understand what you are all going through. My heart goes out. Regarding the Off-Balance thing, I am not done seeing specialists about it, if I find out anything, at all that could give some hope, or idea of what it is or how to manage it, I will surely mention it. But I am losing hope of any kind of news. But will keep trying to find the cause.
Thank you so much, again. It is so good to know that I am not alone.
I understand the loss of hope. A year ago I finally told my hubby that I was tired of specialists, scans and tests. (It was getting costly and they were not finding anything.) So other than to monitor my levels for VDD and regular check ups. I haven't been anywhere. Some doctor somewhere has the answer I just can't afford to keep looking.
Exactly how I feel, I just got so tired of it, it's been so long and every morning I wake up knowing that I am going to stand up all dizzy and off-balance and barely able to walk, and nothing changes or gets better. It just gets me down so much, being unable to do things I need to do during the day because of it. Thanks for understanding.
I can tell you I am 95% sure I have the answer to the off balance feeling. Anxiety. I know you may be skeptical at first and think (it has to be something physically wrong w/ me). The thing is... anxiety causes a chemical offbalance in your body which in turn can cause a physically off balance sensation. I came to this "realization" after getting all tests done to rule out brain or inner ear issues, and thinking back on all the anxiety/stress/worrying I've had the last 4 months. The first time I remember getting the off balance feeling was even during a moment of anxiety.
I'll post more soon on how I'm tackling this, but some immediate things you can try:
- meditation, yoga, breathing exercises when you wake up and later in the day too
- stop worrying so much about your health issues (tough I know, but just do it)
- look into the ayurvedic herbal formula called "mentat" - you can even find it on amazon.com for ~$5-9 a bottle. I've been taking it for about 2.5 weeks and it has definitely helped at least with the ability to focus more and work on the computer more.
- make sure you're getting enough sleep and plenty of water each day
I also spoke with an ayrvedic dr this morning and she'll be giving me more advice on diet, herbs, etc so I'll post more again soon. But TRUST me, if your MRI and ear tests are fine, it is anxiety. And you will get better after some time.
We (my doctors) have already ruled out anxiety as a factor. My off balance feeling is there whether I am working or just watching TV. Gets worse when I need to use the bathroom and when I am tired.
I am happy that you have found something that has worked for you and have been willing to share that for those who want to try it out.
I thought that the off balance feeling caused by anxiety would be on or off, or only during moments of anxiety. I have it 24 hours a day, my balance problems are constant. They get worse yes, when eating, etc, but there isn't really any time when it's not there, its always there. I was under the impression that if it was caused by anxiety, it wouldn't be so constant. Maybe I am wrong. Please do keep us updated. Thank you for replying.
I would get lightheaded and anxiety usually about 2 hours after eating. Definitely worse with stress and when tired. Reactive hypoglycemia due to low vitamin D was what my endocrinologist said, but mine always improved when I ate something. Sorry to hear your's is all the time. Hang in there!!
Have you ever heard of Vertical Heterophoria? I have had the off-balance feeling, along with a bunch of other symptoms, for 4 years now. All of my tests have come back clear (except that I too am low on Vitamin D). But a couple years ago I learned about VH, and have since been diagnosed with it. You can google it, but I would recommend going to the website for the Vision Specialists of Michigan www.vsofm.com and see if the symptoms you have match.
I believe there are only a couple of docs in the US that test for this. I didn't go to Michigan because the other one was closer to me. But they are treating me for VH using glasses with prisms, and I definitely have seen some improvement. It's a long process though, depending on severity of the case. But if it gets me back to normal, I don't care how long it takes!
Good luck, and if you've had any improvement please share what made the difference.
Have any of you with the rocking feeling or feeling of being off balance been told you have nodules on your thyroid? Your parathyroid and thyroid glands are next to each other. High calcium can be the cause of vit d and parathyroid controls this. I had the same feeling for months and when my endo drained one of the nodules on my thyroid to relieve the pressure I immediately felt the sensation and then complete relief. He explained this as pressure on the nerves in my neck going to the area by my inner ear being relieved. It made complete sense because when I laid in bed at night it was like I was in a rocking chair ( or had the spins feeling but back and forth) I notice it come back periodically in the year since the aspiration.
I have had major dramas with balance, feeling as though I am falling and wanting to hang on to someones hand. Other symptoms are ringing in the ears and ears having a feeling of fullness,severe anxiety (think I might pass out) sore joints and severe leg ache if I stand for any length of time.
I had a total thyroidectomy and he removed 2 parathyroids (by mistake) that was due to cancer in 1990. It has been since menopause that the balance has really gone. In the past I have had milder episodes which required stemital.I started taking calcium, magnesium and vit d and my balance and anxiety have definately improved but the sore joints and muscle pains persist.
I have a Drs appt in a weeks time and intend to be tested but now think the levels will not be correct due to the suppliaments. If I withhold for a day I presume that should be OK. It is amazing to find this forum as I had thought the balance thing was thyroid related but the Drs are clueless so this forum is fantastic.
Thankyou for the posts as I can relate to so many of the symptoms
Omg....your going through exactly what I am....I am 27 year old active registered nurse and I cannot do my career anymore because off this disabling off balance feeling....just got vit d checked....it was ten......so im taking supplements. Please keep me posted of anything you find! I'm having an MRI of my pituitary next week.
Btw....mine started suddenly August 2012...not a second of relief since then....only positive tests were Epstein Barr (from mono) low sodium (for about 4 months) and the vit d level of ten....nothing has helped
Are there any doctors reading this forum? With most or all of us having the same type of syptoms you would think they would say 'hey, maybe there is more to VIT D deficiency" and research and get the word out about it. Right now I'm afraid to tell others how I'm feeling because the doctor's don't seem to understand it themselfs so how can I convince others that it is all related to a Vitamin Deficiency. I can't just tell my boss I do not have the energy to do certain things without a doctor saying that it is so, what's a person to do, I need my job.
One thing that I would suggest is to have your ferritin level checked, if you haven't already. A lot of the symptoms you are talking about are not only a part of Vitamin D Def, but Iron def as well. I myself was diagnosed as being hypothyroid shortly after I finished the high dose prescription of vitamin d for 12 weeks. Fast forward to 2 years later and I cannot tolerate any thyroid hormones even at the lowest dose (15 mg). I am not trying to stop the thyroid medicine with my docs help because they don't believe I have a thyroid issue. What a freaking rollercoaster. Typically to feel good you need to have a vitamin D level around 50 and a ferritin level above 60. Ferritin is one of the most overlooked tests. Docs tend to go with the, "Well it's within normal range" thing and not knowing optimal vs. normal. Good luck!!
Definitely have the swaying feeling - back and forth like on a boat or something, and I have had the severe arms/legs soreness, restless leg feeling, severe fatigue, headaches, and shortness of breath when climbing stairs. I've always been really active and eat healthy ... but I have an extremely low ferritin level ... at a 6 ... and thus a severe iron deficiency. Oral iron has helped mitigate some of those symptoms, but I have only been taking it a week so far. All those symptoms (the ones I listed, not the Vit D ones, like twitching etc) are CLASSIC iron deficiency. Unfortunately, doctors usually test for anemia (hemoglobin/hematocrit) and rule out an iron deficiency that way without testing ferritin. I am not anemic (have normal hemoglobin/hematocrit) just SEVERELY iron deficient (uber low ferritin). An iron deficiency is hastened by eating a lot of calcium ... calcium prevents the absorption of iron. I don't eat much red meat and started to eat a lot more dairy and slowly developed all kinds of symptoms. It sounds like you probably have low Vit D AND low ferritin. Stupid doctors never check ferritin unless you make them! And to think they are testing for brain problems when it could just simply be those two things. If you want some good info on classic iron deficiency symptoms, I liked this message board (http://www.************.com/boards/dizziness-vertigo/641448-low-ferritin-vertigo-other-fun-things.html) and loved this website (http://ironmatters.com/) You should totally check out both! I am in my 20's, healthy, and active, and having that kind of fatigue/swaying/muscle weakness/shortness of breath is very frustrating and hard to explain to other people how it has dominated my life this year. Yes, and get your ferritin levels checked!!!! It could certainly be caused by other things, but how said if it is a simple mineral imbalance in your body that is so easily remedied, to live with that!!! I wouldn't have gotten diagnosed if I hadn't done my own research and made them test me for iron/ferritin. I'm on oral iron now and some things improved right away, but still a long battle ahead yet I think to get iron stores back up.
the one link didn't work of course because it's probably a competitor ... but replace the *** in it with "health" "boards" "dot" "com"!
Not sure if anyone is still on this thread, but I have the EXACT same symptoms!!!!!!!!! Let me know if this discussion is still going on. Would be curious if you found the low Vitamin D and Ferritin levels were the cause of the off balance/dizzy/tired/anxiety feelings. Thanks!
I have twitching on my leg, and panic attacks which is due to low vitamin d, I drink one glass of milk daily and take 1000 IUs which work well. I'm also vitamin b deficient and get the monthly shot. Overall, get a second opinion especially when it comes to your health and do your own research. Some doctors only do basic tests and sometimes you personally have to request certain tests.
I have twitching on my leg, and panic attacks, inability to fully sleep at nite which is due to low vitamin d, I drink one glass of milk daily and take 1000 IUs which work well. I'm also vitamin b deficient and get the monthly shot. Overall, get a second opinion especially when it comes to your health and do your own research. Some doctors only do basic tests and sometimes you personally have to request certain tests. Remember we only get one life and we have to provide ourselves with the best care so that we feel well. Cause when we feel well, we perform well and look well.
I was definitely low n vitamin D, balance issues including: falling over, lacking strength in legs and arms, anxiety, general pain all over, fatigue, headache , tendonnitis . Levels are normal now. I am off my anti inflammatory tabs now and symptoms have gone..... Amazing results for me....so happy!