Has anyone experienced these symptoms? For me they are new...
Hi My name is Ron and I was diagnosed with Meniere's disease and had an acute vestibular neuritis attach in June 2019. I got to the right Doctors rather quickly and received my diagnosis quickly as well. For this I feel blessed. My vestibular neuritis attack was attributed to the shingles virus settling in the vestibular section of my brain and it took out the nerves to my right ear. So after some wonderful doctors who provided me with great support I now find myself with some new symptoms that has everyone puzzled. Well they want to add me to the Chronic Fatigue Syndrome group. When I was at my Doctor this week he said why don't you get on the VEDA forum and ask if anyone else has experienced the same things and what have their doctors said/done. So here I am asking for help again from my VEDA buddies.
My new symptoms are:
I wake up every morning with a hangover like feeling. (I don't drink alcohol) and my brain fog from the day before hasn't cleared. I'm getting better than average sleep but I do wake up not knowing what side is up throughout the night. I am on a C-pap machine and it's functioning fine. We do have a new sleep study scheduled, post illness but I don't think it's sleep related because I've been using a cpap machine for 20 years. It takes me a good 2+ hours to get rolling every day. Eventually the hangover feeling will fade and I'll either feel decent for my condition or it's on the couch for a multi hour nap which leads me to my next new symptom. Extremely fatigued. I am a bit anemic and have some low red blood cell counts but we've ruled out all the major reasons for this like Leukemia, Kidney disease etc. If I feel decent and do to much I pay for it for a couple days with extreme fatigue. The final one is brain fog on steroids. At some point in the day I pretty much talk in tongue's. At that point I need to remove myself from all stimulation and rest. This is separate from the fatigue complaint. So these are new and started about 5-6 months ago and they are my biggest complaints from my new symptoms. Does anyone else feel like this?
I'm finally at peace with my new normal. It has slowed me down and allowed me to enjoy and see life from a totally different lens and believe it or not I feel blessed. I never have been closer to my family or my god. I notice things that I would have never noticed before. Yeah my condition sucks but given the alternative it's all good with me. Except my new stuff...
peace and god bless and if you have had any changes to how you feel please respond and help me help my doctor help me!
Hi Ron! You sound like you're in a really good place regarding your diagnosis and adjusting to your new normal. As a clinician, that's amazing to hear! Especially since outlook can play a big part of recovery as you find your way back to balance. Just out of curiosity, have you been undergoing any vestibular rehabilitation therapy following the vestibular neuritis? I see a lot of fatigue with my patients who have uncompensated vestibular dysfunction. This tends to improve a bit when you get your vestibular system functioning a little better so that your brain doesn't have to do most of the heavy lifting throughout the day to keep you functional. The brain is absolutely amazing in the way it can pick up the slack left behind by a dysfunctional vestibular system. But this requires a lot of energy to do, which can lead to that brain fog and fatigue. Best of luck!
Hi Dr. Tate - Early on I did about 6 months of vestibular rehabilitation therapy. At the beginning sitting looking out the window at the passing cars was to much. I progressed slightly with the therapy and I feel my biggest take away was how to walk from point A to Point B and still be on my feet...But still a 30-40 minute ride as a passenger in a car and I'm in overload by the end of the return trip. I still do some of the exercises daily. My right ear is gone and my left just happens to be hyperactive. It doesn't seem that I can build up much stamina because I push myself pretty hard every day because the alternative of meclizine and the couch watching re-runs isn't going to be my new normal. Now after saying that I feel like I get a cup of stimulation daily be it visual, audio or just activities like going out to eat which taxes all of my senses. When the cup is full, I'm done. Most of the time for the day and just need to rest. So that has been my new normal. However recently it seems there is another level of fatigue and brain fog that I wasn't experiencing before. As I read thru the digest I did come up with a possibility. A side effect of the Covid vaccine? Have you seen any increase recently from your patients with those symptoms becoming worse?
Anyway, Thank you so much for responding to my post.
My wife has very similar issues. She was diagnosed with vestibular neuritis about 1-1/2 years ago with 70% permanent damage. We believe it was a result of a flu shot she got just days before the illness hit her. The hospital said it should go away in short time but it didn't so we went to an ENT who performed extensive testing and a more definitive diagnosis. The doctor sent her to therapy for a brief time but it didn't really help, it was very expensive, and insurance didn't cover it so she said there wasn't enough benefit to continue. She struggles every morning for the first few hours and some days it gets better and she can function, some days it doesn't and continues all day. The nausea keeps her from eating on those bad days and she has lost a lot of weight. She did get better with being able to walk (on the good days) but our new granddaughter lives about 4 hours away and when we make that trip, it usually takes her a day or two after each way to recover before she can function so those trips are limited. Obviously she doesn't drive now and when she rarely goes with me to the grocery store, which is about the only place she does go, or an occasional dining out, it usually drains her completely. I keep searching for a better solution, or someone that has been in a similar condition and discovered a solution, or something that helps. She does use CBD in the morning and that seems to help calm her somewhat. So far that is the best thing we've found to help at all. I'm still searching and praying. If anybody has tried anything different and it helped, please relay that info. Thanks
Hi Randy, I'm so sorry to hear about your wife's condition. Unfortunately I know to well how she is feeling. I also know how hard it is on the caregivers. Namely you and my wife. I tease my wife and tell her to switch brains with me for just 5 minutes and I promise that I'll take it back just so she can have an Idea of what it's like. I myself just got off the couch today after doing to much for a couple of days last week. For me, I have been experiencing a double dose of Fatigue and brain fog lately. I think the lord wants me to slow down a little more. I know that there is a reason for my new normal God just hasn't revealed it to me yet.
OK back to you and your wife's new normal. I found a link for some drawings that move as you stare at them. They weren't the magic pill we look for however they did help with going into stores and such. Early on I went into a CVS pharmacy and walked in about 20' and was just so overwhelmed I had to hold onto my wife's hand and look at the floor to get out of there. After doing some staring at these images I can say that my brain processes all the different colors and shapes in a store like CVS better. I still don't enjoy it however if I had to pick up a prescription I feel like I could do it. There's another message hidden in that last paragraph and that was "I had to hold onto my wife's hand"...It's so important to have someone that understands and is there for us. God bless you for being there for your wife!
Here is the link to the 3D images... https://www.boredpanda.com/i-drew-three-hundred-optical-illusions-and-find-how-to-practically-apply-it-in-graphic-design/?utm_source=google&utm_medium=organic&utm_campaign=organic
If you ever need to talk you can count me in as a listener...
God Bless and I hope this helps some,
@ronmerigoldgmail-com I think what you are describing is Binocular Vision Dysfunction. There are exercises that a vison therapist can help you with as well as ways to manage symptoms. I also used syntonic light therapy which heals the brain. I still have vestibular issues, but they have gotten better.
helpful items: Cocoon brand glasses with boysenberry or amber shades, MQ patches for motion sickness, peppermint oil roll on for above eyebrow pain, and wearing a hat or visor in large light areas. Over time the exercises and light therapy made significant difference. Hope you are feeling better!