Unusual dizziness, brain fog, insomnia for 2 months. Please help.
Posted , 3 users are following.
Hi everyone,
After a trip to Geneva in early June, I started to have this unusual dizziness that has lasted up till now. It is not vertigo which I know is room spinning. Instead, it started out as a rocking/swaying sensation which I felt in my body. It was constant from the time I woke up to the time I went to bed.
Around the 3rd week, the rocking/swaying body sensation stopped and was replaced with a constant sensation that my surroundings is tilted. Up till now, I am still having this sensation. It is difficult for me to explain, but it is like I am seeing that the room is always tilted to one side (sometimes left or right, but mostly forward). It does not matter which direction I look at. When I turn my head, my vision and brain automatically adjusts and feels that the room is tilted forward in the direction I am looking at.
Yet this has neither affected my walking nor caused me to fall. It is not worse when I walk or run or move my head, but it is constantly there, even when I sit down or lie down.
I have seen an ENT doctor who diagnosed me with vestibular neuritis and gave me a course of steroids, betaserc and flunarizine to take for the dizziness. However, the dizziness has not improved. Ever since I started the steroids and betaserc in week 5 (which I have now stopped), I have also started experiencing this constant 24/7 brain fog. I have been having constant problems concentrating, thinking, doing cognitive tasks, remembering things, so much so that it has affected my ability to converse with people, or listen to my lecturer or tutor talk (I am a student). I have never had any problems with this before. This brain fog has been with me ever since it started and has not let up for even 1 moment. It is getting harder and harder for me to cope with my studying and even my normal life because of this..
Since week 5, I have also been having insomnia. My sleep is terrible now and is unrefreshing. I will wake up 2 hours before I need to every day, leaving me extremely tired. Yet, I do not feel sleepy in the day.
I have seen multiple doctors for this, including another ENT doctor, a neurologist, and an opthalmologist. I have also done 2 MRIs, a VNG, ENG, VEMP, eye checks, lumbar puncture (the neurologist suspected encephalitis), EEG and nerve conduction studies, which have all come back normal. The VNG was surprisingly normal which showed that I definitely did not have vestibular neuritis. I also did a posturography test which did show that I have problems balancing (I fell backwards while doing the test, which is consistent with my constant visual sensation that my surroundings are tilted forward.
Please let me know if you have experienced this before, or if you have any idea what it is. I am currently inclined to think that it is not a vestibular problem, but a deficiency of some sort that is causing these unusual symptoms. Please also let me know if there any medications you have tried that have relieved your brain fog, as this is affecting me greatly right now.
Thanks..
0 likes, 2 replies
lily65668 keith0612
Posted
Hi Keith,
I wonder whether you flew to Geneva, and how long the flight was. Sounds a bit like "mal de débarquement" to me. Google it - the VEDA site is useful. They use the French expression even in English, but it actually means disembarkment sickness. I got it once after a long flight to Hong Kong in storm conditions. It took several weeks for the feelings of general instability, ground moving up and down beneath my feet etc. to subside spontaneously. I don't remember having any visual tilting effects from it, but it was nearly 50 years ago, so I may have forgotten.
I'm surprised none of your doctors seem to have thought of this, and am wondering if you told them about the journey.
mark122672 keith0612
Posted
Hi Keith,
I traveled for the entire month of July 2017, mostly by car (8300 miles) and 2000 miles by cruise ship to Alaska. When I got off the boat 3 weeks ago, we traveled by car another week to our final destination. Since then, I feel I have had MDDS. I don't have the "tilting" feeling you are experiencing, but I have been light headed and have fealt unstable for weeks. I too went to an ENT, who performed tests on my balance and hearing. My hearing was excellent and my balance seemed fine. I have had 4 episodes of BPPV (positional vertigo) in the last 7 years, but these lingering effects from my extended trip are different. I've been on alot of crusies, and each time it takes about a week to get my land legs back. This time, with all the travel I did, I am still trying to get back to 100%. The ENT perscribed an allergy pill and a 4mg Medrol Steroid Dose pack. I just finished the steroid a couple days ago and it definitely gave me insomnia and light headedness when I went to bed. I have heard steroids can linger in your system for awhile after you finish them, so it appears I will just need to wait. My main issue now, is the brain fog. It's hard to describe other than, I feel lightheaded when look up from my computer, yet my head, especially in my eyes and nose region feel heavy. My ears, when I lay down sometimes feel like they are filling up which makes me feel really odd and I have to sit back up. I do not have an infection as I was checked for it. Something is happening and for all of those who pay close attention to their bodies, it can be quite scary. Many doctors do not believe in MDDS as there isn't a "pill" that can be perscribed to fix it. Imbalance, even in the slightest forms can be debilitating and frustrating. Not being able to sleep when I am exhausted because I feel so odd when I lie down is also quite frustrating. Hopefully, over the next couple of weeks, when the steroid is out of my system, and more time has passed by for my euqilibrium to calibrate, I can get back to normal. The brain fog mostly affects me when I am sitting and trying to concentrate. It comes and goes though, along with the light headedness. ENT's always want to perscribe a steroid or an anitbiotic, even if none of their exam measures warrant one. I DO NOT like how the steroids made me feel. I'll take the good with the bad though. I have been constantly researching this for the past 3 weeks, so I have gained quite a bit of knowledge. I could be much worse so it's hard to complain, while at the same time I'm frustrated that our medical profession cannot come up with steps to cure MDDS. I will warn you, the more you read, the more exposure you have to stories about people having MDDS for years or decades, which causes an additional level of anxiety. I try to walk for 1/2 an hour each day. Bright lights and loud sounds tend to irritate me. Walking in the dark or a dimly lit area is challenging. Driving doesn't seems to be an issue but the thought of not being able to treat or cure the MDDS puts you in a depressed state. Good luck with your condition, and hopefully more people discussing this ailment can lead to some tangible solutions.