I am a newbie/not yet diagnosed.
I have been reading these message boards for a couple weeks and have found them incredibly helpful. I think I have MAV, but have not yet gotten a diagnosis. After reading many peoples stories, I see there is a pattern of many weeks, months, years before being diagnosed with MAV.
I am an otherwise healthy 39 year old active woman with 2 small children.
I began noticing intense fatigue episodes lasting 12-36 hours a few months ago. They were always after an early morning swim workout that I had started that was pretty intense. I had been doing triathlons for several years, but this doubled my swimming length and I was doing lots of new drills and strokes. I thought the fatigue was from getting up early, from the harder workouts, from not eating the right things before/after, etc. I stuck with it a couple times a week, thinking if I slept more, ate better, etc I would get better conditioned and the fatigue would improve.
The fatigue was pretty severe…I felt drugged/brain fog mildly and couldn’t stop yawning. I felt a little off balance/stumbling at times but I thought it was just b/c I was tired.
I craved almonds and pistachios and ate them for extra protein several times a day. I had a couple bananas a day to help with energy, I upped my daily caffeine, craved peanut butter, started having more deli meat ham for a quick snack and craved cheddar cheese. I had a glass of red wine or 2 most nights.
After a couple months with the fatigue episodes getting worse/persisting I decided to make sure nothing else was going on and went to my GP. Just prior to my appointment I started feeling off balance occasionally and had the feeling like I had been on a boat…especially with exercise: on my bike I felt like I was going to fall, stationary bike I felt like peddling was too tiring, and one time walking I was having staggering/swaying and extreme fatigue. I kept taking a day off, then would try again but it would be worse. I had a couple random days where I felt great…and had great bike rides. These were all accompanied by a mild drugged/foggy feeling in my head.
My GP ran routine bloodwork, and also checked B12/thyroid/iron and all was very normal.
MRI was scheduled b/c I was starting to be concerned for MS (a brother and a niece have MS).
While waiting the week for the scheduled MRI, I became much more ataxic. I started actually swaying side to side if standing or sitting, and felt more fatigue. It became too risky to drive and walking was slow and difficult. No spinning, no nausea, no obvious headaches although I did get what I considered “tension headaches” at the time.
After 3 days of worsening “vertigo” (swaying side to side only) .symptoms, I went back to my GP who ruled out BPPV via the dix hallpike move, and suggested I may have vestibular neuritis. He could not see any nystagmus. He scheduled me with an neuro-otologist for the next week.
A couple hours later I had gotten a ride to pick up my daughter from preschool, and walked in…long hallways, very loud and crowded and I felt much worse. Swaying and trouble walking worse than ever. I made it to her room and the teacher saw me and called for help to get us back outside to my ride. While talking to them to let them know I was “ok” my head filled with severe fog, like thick glue and I felt like I was miles away. I couldn’t hold up my head or stand and when I tried to speak I just started stuttering so badly that I couldn’t say my name.
They called an ambulance…took me to the ER and I stayed a couple days while they ruled out stroke/TIA, tumor, MS (normal MRI, normal EKG, Normal echo, etc, bp ok).
I discovered that if I didn’t talk for a bit and stayed lying down, I could talk normally for maybe 30 seconds. I even had a few minutes long periods where I talked normally, but the stuttering and slow speech would return. I began to realize that the more “brain fog” I had, the worse my speech was. When my head cleared I could talk normally (I have never stuttered before).
Neurologist examined me there and said he didn’t know what it was, suggested it was anxiety and said to see an ENT. (I had no weakness, no nystagmus, no tremors, no loss of sensation, just disequalibrium and with normal MRI he dismissed me pretty quickly).
Physical therapists examined me and were surprised that I had no nystagmus…no matter how many times they put me in different diagnostic positions.
I was sent home, and they arranged speech and physical therapy to come to the house.
The severe imbalance/swaying/brain fog/stuttering persisted for a week. I would have moments where my head would clear, and I could talk and walk better but it would woooosh right back, especially if sitting, standing, or talking. My head had to be resting on something and still or it was much worse.
After a week…the “clear headed” moments got longer and longer and I could sometimes sit without my head supported and had times I walked without having to touch walls or objects for balance.
I saw the neuro-otologist, had normal hearing exam there, and he examined me and confidently said I do not have an inner ear problem, and to see a neurologist. He suggested it may be a type of migraine (I had been suspecting it by that point from all the reading I was doing about my symptoms, and was glad he independently said migraine, too!).
I saw another neurologist who didn’t know what it was, but said it definitely was NOT migraine related b/c I wasn’t having severe headaches?. He said “maybe a type of aortic dissection or basilovertebral syndrome” and ordered another MRI angiogram of my head and neck (it was normal). No follow up from him, and my next appt. is 2 months away!
After 2 weeks I had more clear headed hours, and shorter episodes of brain fog/stuttering/drugged feeling that would last 10mins to several hours, but much less severe.
Now 3 1/2 weeks after going to the ER, I have even had a couple pretty good days…3-4 days straight of talking normally, and just a persistent “walking on a boat” feeling that would get worse with walking/talking/emotional times/hunger/tired). I thought I was moving on from this, but then a few days ago the stuttering/slow speech came back and it’s been a rough few days of speech problems again most of the day and more swaying when walking. Lying down always helps.
I can’t drive most of the time, have had to get full time babysitters b/c I can’t take care of my children alone, and am hoping for answers and relief soon. I read all these stories of this going on for years and I am scared.
I think this sounds like MAV…I have never had what I “thought” were migraines, but definitely get tension headaches regularly, and at times this spring for 10 days straight. I get sore neck often. In hindsight the fatigue episodes had been going on for while, but always during ovulation or my period, or after intense workouts.
Has anyone had persistent speech/stuttering issues that coincide with the brain fog and constant “being on a boat” feeling? I have found scattered message board posts about it, and have seen speech issues as part of an aura, but nothing that fits me exactly.
I found a new GP yesterday who didn’t think it was migraine, but at least he was more proactive about helping me (the other one essentially gave up and told me to “stay the course”??) He recommend a new neurologist and got me in…I see her tomorrow (fingers crossed). I tried to schedule an appt. at the Mayo clinic myself, and they told me 5-6 months wait. He says he can get me in faster ( from what I’ve been seeing on message boards they will likely dx with CSD?)
I have read several papers by Dr. Silver, looked extensively at Dr. Hain’s dizzy website, and looked up every article I can find on it.
I bought “Heal your Headaches” and started the elimination diet 10 days ago…stopped all caffeine, nuts, cheese, msg, nitrites, alcohol, etc.
I started a diary of my food and sleep and symptoms and am trying to stay calm, but have had a couple sad days with this that luckily pass.
Am I barking up the wrong tree? Nothing else seems to fit.
Thank you for any help or support you can give:)