That sounds wrong, I wouldn’t wish this on anyone, but this site has helped me calm down so much as I read your stories and know that I am not alone. I’ve been lurking for a few days and thought I should introduce myself. I’ve recently been diagnosed with a vague MAV or possible related to the vestibular nerve by my neurologist. He is throwing prescriptions at me and I have so many questions.
I had two cases of true vertigo in the last 10 years, neither lasted longer than a day. The 1st time it happened the Dr. said it was from the crystals in my ears and the 2nd time I thought it was food poisoning as I was vomiting. 2 years ago I started having a feeling of being “off”, almost a passing out feeling and then it would fade, it only lasted for a minute or two. These became more frequent and I awoke one morning with a feeling of being on an uneven surface or a rocking boat. This was preceded by a rash on my wrist and inner elbow (Dr. did not think it was related). My Dr. at the time ordered MRI, blood-work and ENT appt. ENT stated it was not my ears, possibly TMJ. Blood-work showed elevated white blood cells and Epstein-Barr virus (not active). When I went for the MRI (which was “unexceptional”) I was given Valium before the procedure and I felt so much better. I let my Dr. know and she prescribed some for me and within 6 weeks I was back to work, within a few months I no longer took the Valium (although I carried it with me just in case). A year later I was feeling great. Then a head cold ran through our family and afterwards back came the rash and then the rocking boat. My new Dr. (we had moved to a new state) thought it was an inner ear infection and inflamed Eustacian Tubes. He prescribed an empiric course of broad spectrum antibiotics, nasal spray (mometasone) and because Valium had worked before he gave me Valium to take as needed. While on the antibiotics I felt 80-90% better, but once I was done with them the rocking became my new normal. I learned to pace myself and as long as I stay away from my triggers I can cope pretty well.
My triggers are fluorescent lights, big box stores and over doing it. I cannot stand and have a conversation with eye contact, it’s hard to stand and look down (i.e. dicing vegetables, writing a note). I do not get headaches although my neck is stiff sometimes and makes crunchy noises (I saw a chiropractor several times and the adjustments stopped the noise but did nothing for the rocking feeling).
So, I wasn’t living my old life, but I felt like I was coping as best I could. I had the Valium (Diazapam) to take as needed (5MG up to 3x a day). This got me through things like shopping for my daughter’s prom dress, her graduation, taking my son for his 1st suit, my daughter’s out patient surgery, picking my husband up from the airport and long drives where I would need to stop at rest stops with fluorescent lights (driving does not bother me at all except night driving with the lights). If I was home and not doing any computer work then I didn’t take any. I started a part time work from home job and during the full time training period it allowed me to do the computer work. I had no side effects from the Valium and while it did not stop the rocking feeling it almost slowed it down and made it so much easier to deal with.
Now my Dr. left the area and I have a new Dr. My new Dr. doesn’t believe Valium should be used long term and will not prescribe it . I hoarded my last prescription from September to make sure I could handle my daughter’s surgery (4 hours in fluorescent lights and patterned carpets) and picking my husband up from the airport.
My new Dr. sent me to an ENT (everything was normal) and the ENT referred me to the neurologist (listened to my story, had me perform a few (standing, walking, pushing against his hands) tests and prescribed topomax. That has horrific side effects so I emailed him to see what else we can do as I need to work and it is getting very difficult to be on the computer for 6 hours a day (he will not prescribe Valium), I asked if we could try antivirals. He canceled the topomax, denied the antivirals and he prescribed propranolol 20 mg Tablet with instructions: Take 1 tab (20 mg total) by mouth three times a day.
I know I am not a neurologist, but it seems like maybe there are some other areas to check before I just start taking prescriptions. For example I am not sure if the MRI from 2 years ago included my neck, I am a 46 year old female so I am wondering if this is hormone related and what about my vitamin levels? I am also wondering if this could be viral in nature.
I would appreciate any advice you can give me. I am afraid he will say I am non-compliant (I already feel like they think I am a junkie for wanting Valium), but I would prefer some natural alternatives if possible before just taking pills willy nilly in the hopes that one might work.