Muscle Twitching (all over body), Headache, Ear Pressure/Discomfort, Ear Ringing (Tinnitus)
About three months ago I woke up with a headache that was very unusual. Unlike the “usual” sinus type headaches that I get from time to time in the front of my head, this one was at the top of my head (top/rear). I understand this to be a Tension Headache - feels like someone is squeezing on my brain. A few days later a few other symptoms began - pressure/fullness/discomfort in both of my ears. Feels like I have cotton balls shoved into my ears. At the same time I began to experience ringing (tinnitus) in both ears as well as sensitivity to loud noises. About three weeks later I began to have muscle twitching all over my body. The twitching has only worsened in the past several weeks. The headaches, ear discomfort, and tinnitus are also still there with no signs of letup. In addition, I sometimes get these strange feelings between the top of my head and ear (hard to describe - almost like an insect is walking on my scalp - but nothing is obviously there.)
I started with my general doctor (received a Z-Pack - my suggestion) thinking it was perhaps some kind of sinus infection. No success. Then went to an ear specialist - hearing was tested, which was fine. Doctor found nothing unusual. Said it could be allergies - gave me some Nasonex samples. No success. Then went to a Neurologist - he gave me an old school sleep medication (I forget the name - it is supposed to help relieve tension headaches.) I did not tolerate the medicine well so stopped taking it. Had an MRI of my brain - no abnormalities found. Lyme test (upon my request), Western Blot only - test came back negative (I was reactive to only one IgM band.) Neurologist did not do a nerve study but did check to see if I had any weakness - he did not detect any and I have not noticed any so he does not think ALS is likely. He was a little puzzled by the other head symptoms.
Here is where I need your help, please. I’m not asking for an online diagnosis but I’d like some thoughts as to where to go from here. When I query on these symptoms, I get a lot of Lyme hits but I also get a lot of neurological hits (ALS, Fibromyalgia, etc.) because of the muscle twitching.
Should I pursue the infectious disease route (perhaps a bacteria like Lyme or virus such as chronic viral meningitis has taken residence in my brain and won’t get out) or does this sound more neurological in nature. So should I see a ‘lyme literate’ (as they call it) infectious disease specialist or another neurologist. Any help or insight would be greatly appreciated.
Hi. I saw your post and almost fell out of my chair. I have the same symptoms as well, only one one side (the right). The pain in my ear never goes away and the stabbing pain behind & above my eye is sometimes off the charts. It started over 6 mo. ago and the headaches & ear pain/pressure were so debilitating, I have had to constantly re-arrange my schedule and miss appts/social functions. For approx 3 mo, I was also constantly nauseous & dizzy. I have been to my GP at least 5 times, my eye doctor, my dentist (told at one point possibly TMJ?--no), a PT (for the chronic throbbing migraine headache that literally lasted 3 weeks without ceasing)--didn't help, & a neurologist. I've been through 4 courses of antibiotics, 2 bottles of narcotic pain killers, 2 kinds of migraine meds, a bottle of nausea meds, 2 large bottles of ibuprofen, 2 boxes of benadryl (all of which have helped me cope with the pain & symptoms) and am taking neurontin daily for the seizures/muscle jerks (diagnosed w/ RLS & PMLD) hmmmm. I personally think it is some kind of virus. Mine started out with a runny nose and my eye bothering me, and the pain seemed to radiate from behind the eye into the deep inner ear (with pressure/muffled hearing like swimmers ear) and also affects that side of my sinus). The cotton in the ear is exactly what I feel--like there's something in there!! My muscle twitches graduated into tremors, mini and then full blown grand mal seizures where I lost consciousness several times. I dropped 20 lbs in 6 wks (due to dizziness/nausea--nothing tasted good). At one point, I really thought I was gonna lose it. For some reason, my symptoms have improved (OR I have gotten used to feeling awful every day) and am functioning better the last 4 or 5 weeks, but still tired a lot, having terrible headaches 2-7 times/week and the pain & pressure in my ear has lessened (but never goes away), still taking 9-12 ibuprofen a day for the ear & eye pain. The problem is, I haven't gotten a reasonable explanation for any of it from any of these doctors and my insurance refused to pay for an MRI so have given up on the medical community. Have you found out anything else/new since you posted this???
I have had the same symptoms since last October. I have not seen anyone for it yet but plan to soon. I also have what seem to be swollen painful hard nodes below my ears at different times. I started tracking when my headaches, ear pain and swollen nodes are the worst. I noticed during times of the month when I have hormonal changes like week leading up to ovulation and week leading to my period. The muscle twitches are very annoying but no pain. I have started in the last couple months to have pain behind my knees and random muscle aches but now swelling when that happens. In oct when I first got sick I thought I had a kidney infection bc the pain in my back was similar. I felt so bad I went to the ER. They tested me for a kidney infection and sent me home. 3 days later called me and said there was no infection. Please someone help. All of my research points to Lyme....