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Has anyone experienced the feeling that their brain is shaking? I know this sounds bizarre, but I feel vibrating sensations in my head ALL THE TIME.
For some reason, these feelings are more noticeable at night or when I'm lying down. If I am really tired or sleep deprived, it's worse. Sometimes the vibrating resonates into my spine and legs.
It is an awful feeling and I sometimes think it's driving me crazy. My doctor started treating me for Lyme about 3 weeks ago. I've had symptoms for nearly 6 months, but I'm hypothyroid too so everyone kept blaming my thyroid.
Someone mentioned Lyme to me and I looked up some info. on it. I saw a picture of a tick bite and realized that I had the same bite back in July---coincidentally, exactly 9 days before I was seen for my neurological symptoms, extreme fatigue, vision problems and nausea.
In fact, I was seen for my "insect bite" and prescribed ceflex for 7 days. I guess my big mistake was not going back to the same doctor who saw me for the bite.
Thing is, I ran the Peachtree Road Race a few days later and just assumed my symptoms were somehow related to my run--like a pinched nerve or something.
Anyhow, the doctor I went to for all these wierd symptoms diagnosed me with Hypothyroidism. I went to an Endocrionologist, who helped get my thyroid blood levels under control and then said I needed to see a family physician for these persisting symptoms.
I've now been to 3 family physicians, an ER doctor, a neurologist, a chiropractor and now an MD who specializes in conventional medicine as well as holistic care.
When I called to ask him if my symptoms could be related to the bite I had back in July, he immediately suspected lyme.
Even though the PCR blood test came back negative, he still decided to treat me. About 20 hours after starting the medicine, I developed a 102.3 degree fever that lasted 7-8 hours and then vanished.
I can handle fever and the arthritic symptoms (pain, stiffness & creaking in my neck), but this vibrating sensation is unbearable.
I am beginning to wonder if I will ever be well. I am a stay-at-home mom with 3 preschoolers in my care. I feel very desperate about my situation many days.
Sometimes I doubt that my doctor is right and I wonder if he should do more tests. I've already had a CT of my brain, a brain MRI and 3 MRI's on my back, all which came back negative. What do you all think? Thanks for your help.
[This message has been edited by Lymetoo (edited 25 January 2005).]
YES! I had the vibrations in my brain when I first began treatment. I think it went away in a few weeks time. It was a VERY weird sensation, and I know others here have talked about the same thing.
I would say it's probably worse when you are trying to rest, because nothing else is distracting you from it. Just like distracting yourself from pain by doing something active.
I really feel for you with 3 young children. We have many young mothers here who can definitely relate to your situation!
Trust your dr. I'd be willing to bet money that he is VERY right about the Lyme diagnosis! You may want to start looking for an LLMD [Lyme Literate MD] in case this dr decides not to continue treatment past a few months.
You also need to be checked for co-infections. Babesiosis is one that is fairly common and requires different meds. Very important!
OK, my hands are worn out! Hope someone else comes along with more info for you!
Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html
Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm
Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html
Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html
Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html
Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html
Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html
Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html
More info: http://www.ilads.org/
Breakthroughs in Lyme Disease http://flash.lymenet.org/ubb/Forum1/HTML/024093.html
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oops!
Lymetutu
I have what I describe as 'an electric pressure' at the base of my skull. It combines the sensation of something pressing out from within and the sensation of a buzzing vibration. No doubt quite different, just thought it might reassure you a bit not to be the only one.
It might pick up nothing more than the MRI's, but I would think they should give you an EEG.
Neurocognitive testing would be another intelligent diagnostic move. If you're having some form of encephalopathy, it would be good to know if there are specific congnitive processes being effected.
Has someone talked about referring you to a neurologist?
I don't know what value these steps end up having in terms of getting you better. For me, the more information the ducks can tease out of my and I in turn can extract from them, the more I feel that there is some knowable, reasonable explanation for what's happening, and that has a certain reassuring value.
My last EEG showed 'very pronounced, diffuse, non-focal slowing' - the neurologist who ordered it couldn't believe I was alert during the test, said it looked like someone in a very deep sleep. Nonetheless, I was as alert as I get.
This has not contributed in any tangible way to my recovery, but it's an 'objective finding' and produces some additional acknowledgement in the doctors who treat me.
Lyme can impact the nerves in all sorts of ways, and my guess is that some form of nerve inflammation plays a role in these sensations.
You might ask if your doctors think one of the gaba agonist drugs could help. I had no result at all on gabapentin (Neurontin), but am doing a wee bit better on Gabatril.
Hang in there.
Paul