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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.
Hey Blackant5 your symptoms are just as identical to mine and started the exact same way. i was woken up in the middle night by a severe migraine headache like pain but not the usual type of headaches that ive had before it was just different this time and since then it progressed into fatigue dizziness, ringing in the ears, and i to get that exact same feeling that you speak of about the bug. i related mine to more like teeth chattering when your cold but in your head and face and its only internal not external. so i guess in a way i want to say your not the only one and i hope that you are able to overcome this and find a doctor as well to help you. i am currently looking for a lyme disease specialist as well and just the other i actually ordered the Lyme test kit from IgenX which is the lab or facility that does the indepth testing for it if you want i hear allot of people recommed to make you that your lab and blood work is done thru them i think was the website but you can also google it. i hope you can find a Dr soon and for the sake of both of us, i guess ill say i hope we both can get better from whatever is causing our symptoms! best wishes to you
Just wanted to throw in my 2 cents! I also have experienced many of the same symptoms you all have described, and was diagnosed by an LLMD last December with Lyme (after being blown off by my regular docs...they wouldn't listen). I can't agree enough with the advice to get an Igenix Western Blot, they are the gold standard. Also, getting in with a good LLMD is critical with your getting a proper evaluation and the correct diagnosis. Treatment for lyme is not a "one size fits all" kind of thing...everyone's illness is unique in some ways, and it takes a good LLMD to sort thru all the symptoms and labs to come up with the proper treatment. Along with the muscles twitching and headaches, I especially have dealt with the ear stuff, feeling like there is cotton in my ears, as well as the annoying tinnitus. However, as I am improving, these symptoms seem to be lessening...I do experience flareups when my doc changes my meds and he has explained that is to be expected as the toxins from the lyme die-off can cause herx reactions. I encourage you to keep searching until you find a good LLMD. Don't settle for less...if you feel like your doctor isn't listening, keep searching until you find the right doctor for you...just be sure he/she is a LLMD! Remember that lyme is known as the great imitator, so it can appear to be something it is not (i.e. MS, anxiety, etc...)...only a lyme doctor can sort thru it all to tell you for sure if what you're dealing with truly is lyme. Educate yourself on lyme...learn as much as you can! God bless you and I pray you are on the road to recovery very soon. ~Prairiemom

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