rocking/swaying dizziness for over 2 months
Posted , 27 users are following.
Hey guys, so this is my story:
My name is Brittany. I'm 28 years old and since the beginning of November I have been experiencing this chronic disabling rocking/swaying dizziness (over 2 months). I had gone on vacation with my friends and sister at the end of October to New York. I had also gotten sick (upper respiratory infection) while in New York and when I came back home I felt this rocking sensation. At first I thought it was just my body getting used to being back on land after being on subways for a whole week and the airplane, but it continued. Then I thought it was because of the virus I had and it had affected my inner ear and it would go away soon, but it persisted. After about a month of this rocking on a boat sensation, I felt the symptoms get worse as I was beginning to recognize that this was not normal and it is something I need to go to the doctor for. I ended up going to the ER first as I became so incredibly overwhelmed with how uncomfortable I was feeling over this dizziness and went on state disability as I could no longer work with this condition without getting this treated. It was affecting me not only physically, but mentally. From there, I saw numerous specialists/doctors: Neurologists, ENTs, Audiologist, Physical medicine dr., Chiropractor, Acupuncturist. It didn't help that when my dad drove me to my first neurologist appt we ended up in a bad car accident which definitely affected my dizziness and my ability to progress from this condition quicker. The doctors have performed numerous tests to rule out major illnesses including checking my vitals, performing a ct scan, mri (with and without contrast), audiologist testing for pressure/fluid/hearing loss. They have all come back normal which is great! I mean I am so incredibly relieved because I was for a while thinking I had a tumor or ms or menieres.
However, the doctors have not officially diagnosed me conclusively. I have had them say it may be vestibular neuritis, MAV/vestibular migraine, mal de debarquement syndrome (which I have read online that people said some doctors think mal de barquement syndrome and MAV are related-not positive on that). I have also read about people with BPPV and PPPD having similar symptoms as I and am uncertain what will work as far as treatment to get rid of this awful dizziness. They said it could be vestibular neuritis because I had a virus when I came back from New york. It could be MAV because I have history of having a migraine (also runs in the family) and I had also started birth control during my trip to New york which apparently migraines can be triggered by hormone level changes. It could be mal de debarquement syndrome because I was on the subways and long airplane ride. It would be a combination of these with also BPPV and PPPD.
My Symptoms:
-swaying/rocking sensation (body and mind) when sitting
-Swaying/rocking sensation gets much worse when I stand up, walk around, am in the dark/have eyes closed, am anxious, or very tired
-when I am extremely anxious/crying/didn't sleep at all because of this condition, my rocking can turn very violent and the symptoms are much worse which can at times make it so difficult for me to stand for long periods of time.
-It feels as if I am walking on a trampoline everywhere I go
-the symptoms fluctuate throughout the day
-the more visual stimuli around the easier it is for me to feel more off balance
-my vision feels like its playing catch up
-I feel unbalanced as if I am slightly drunk and sometimes have to hold onto the walls to guide me especially at night
-I feel as if the symptoms disappear when I am in the car (the car movement in a way cancels out the movement I feel in my head/body-not sure if its because I am focused on driving or what)
-it feels as if my body is a buoy rocking in water and my brain is mush/jello sloshing around in my head. It also feels as if my brain is being pulled in different directions because of the rocking sensation-making it more difficult to focus
-I am more forgetful/having a harder time concentrating/lose train of thought easily
-I am much more anxious/breaking down everyday at some point over this as it is extremely difficult to get throughout the day ignoring the symptoms-its exhausting.
My doctors are encouraging me to do vestibular rehab and then look into medications so that is what I plan on doing right now. I have been doing my own vestibular exercises at home regularly morning and night as well as staying active going on walks everyday (they say even though it feels worse walking and moving so much, I need to keep moving so my brain can learn to compensate and not slow down my progress). I am in the midst of starting vestibular rehab therapy at the doctor next week and I am hoping they will have something to give me that will help this awful debilitating dizziness disappear. After that I will look into different medications to see if the symptoms will subside.
I am so desperate to cure whatever is causing this horrible rocking dizziness. I have also been trying to do different maneuvers for BPPV just in case if that is part of the problem but have had no success with it going away...If anyone has any advice or has anything similar to what I am experiencing please message me. I appreciate any suggestions on any more tests I could run to get a more definitive diagnosis, any vestibular specialists you guys recommend me seeing through kaiser or out of kaiser, any techniques, supplements, medications. Any helpful information would be greatly appreciated. Thank you and I will pray that you all are soon on your way to full recovery.
-B
0 likes, 37 replies
milijanet britnicher
Posted
i know this is an old post but I have the same symptoms after a total hysterectomy and was wondering if you got relief or figure out what was wrong?
kristen44548 milijanet
Posted
From what I understand these symptoms are common in women experiencing hormonal changes in the brain. I found immediate, lasting relief through homeopathic medicine- I just posted which one in a response in this thread but I'd suggest a homeopathic doctor visit if what I wrote doesn't resonate with you.
kristen44548 britnicher
Edited
I feel your agony, I have suffered all of these symptoms and am so happy to offer a possible remedy! I will mention that my motion sensation was worse when I was still. It hasn't been diagnosed but I'm certain I have MdDS. I was describing my symptoms to a good friend of mine and it turns out she has several homeopathic doctors in her family. She did some asking around and although homeopathy is very personal and can vary widely from person to person she gave me a short list of common vertigo/dizziness remedies to try, a day or two apart. The one that worked for me was belladonna, and I swear, it was miraculous. Within hours I felt better and within 2 days I felt complete relief and my symptoms haven't returned. You can buy it anywhere that sells homeopathic medicine- many health food stores do. Or any place online. The number on the tube can say 6, 12 or 30, it wasn't suggested to me to get higher than that. 30 is what the shop near me had and it worked like a charm. Other remedies on the list were gelsemium and cocculus- I would try belladonna first, you'll know within a couple of hours. Here is the dosing info her mom sent:
Whichever she chooses take 3 doses (of 1 pill) in an hour and wait. So every 20 minutes, 3x. If there is improvement then stick with that remedy and take a couple more times throughout the day. Dry. If there is no improvement after taking the first 3 doses and then waiting an hour or so, then she can switch remedies. Only if there is no improvement.
Honestly I can’t express how grateful I am for this medicine. It was about $5 per remedy, I bought them all and tried gelsemium first, it wasn't right for me but it's worth trying. When taking homeopathic medicine you should have no food or water (or toothpaste, gum... anything) for 20 mins before or after. You just let the little sugar pill dissolve under your tongue.
maureen50778 britnicher
Posted
Did vestibular rehabilitation help you?
lucy73504 britnicher
Posted
I have been suffering for the last two months with dizziness and balance issues. I also feel lightheaded at times. Mine started as severe jolts of dizziness like I was going to fall/ pass out which has lead to me on an elusive quest to find an answer. Countless doctors appointments found my Iron Ferritin level was 20 (normal range but very low) so now I'm on iron tablets. Have you had your iron level checked? I can't say it's improved my symptoms so I then visited an ENT doctor who thinks it's Vestibular Neuritis. Although on the other hand, an MRI scan has revealed I have a Chiari Malformation 1 which can affect the balance system. Currently awaiting on Neuro radiologists opinion.
It's good you have a clear MRI, it soundds like VN to me. You can help your brain to compensate ( the other side of your balance system makes up for the loss of the other) by doing vestibular exercises at home such as moving a pen back and fourth six inches away from your eyes and passing a ball from hand to hand for ten seconds. Look on youtube.
Does anyone have pressure in the head and slight headaches?
joshuapryce1987 britnicher
Posted
I believe that the answer to your health issues is not more exercise. I think you need to eat more healthy and the mentality and mental wellbeing is based on training. Do things that are mentally challenging and as i said before you need to eat right and try more saturated fats and health supplements. Its important to take vitamins daily.
Lessayi2036 britnicher
Posted
I have some of those same symptoms: Swaying like I am on a boat/bobbing up and down, difficulty walking in a dark room, heavy legs, and had sensitive to light. However, I say an ophthalmologist who gave me some drops for my eyes and I can say, "Thus far, the drops seem to help." One problem down and three more to find out what are the other cures. I would like to know what kind of treatment you or anyone received. I have seen several ENTs, had MRI, MRA, results were normal. I have been going to physical therapy for over 2 years for vestibular exercises. This is not helping me! I just want a normal life again. Let me know what kind of treatment, exercises, best foods to eat or not to eat that may trigger the symptoms.