[Coach2E]

Thank you for reading, I am struggling with some very strange sensations that have my docs befuddled at the moment. Haven't worked in weeks, and my life is on hold until I can resolve this issue.

I am a 32 years old male in overall general good health. Don't smoke, rarely drink, good blood pressure.

I have have a series of progressing symptoms that are about 3 months old.
It started with a vivid dream that woke me up about 90 minutes into falling asleep. A bloom of goosebumps rushed up my body and the left side of my head. It scared me, I got up and felt somewhat disorientated, and I felt very stimulated. I was unable to fall back asleep that night.

It went away, but I felt strange the rest of the day. Two nights later I had another episode and could not sleep. It was intermittent for about two weeks and then on week three it started happening every night and has been with me ever since. Vivid dreams and energized awakening with a flood of goosebumps.

After keeping me up for 3-4 straight days, I became so light headed and spaced out at work I had to go home and I haven't been back.

I am now dealing with the following daily symptoms:

strange sensation in my legs
tingling on eye brow, top lip and ear (all on left side) 2-3 times a day for a few minutes
tingling on back of hands 2-3 times a day, comes and goes quickly
Various muscle twitches on seemingly random parts of my body
Hypnic jerks as I'm trying to fall asleep
Fatigue without being tired (sleepy)
Mental fog/cloudiness/cognitive issues
Increased sensitivity to loud noises, quick movements, flashing lights
Subtle pressure in eyes and around skull
Occasional sharp pain in eyes
Moderate pressure at base of skull
Episodes of what seems like an electrical jolt that shoots through my body that just makes me feel odd, almost sick
unfocused vision
light headedness
Indefinable strange body sensations


I have had my thyroid checked, an EKG, an echocardiogram, an MRI of my brain with and without contrast, an X-ray of my lungs, and a 24 hour metanephrine urine test. All have come back good.

My insurance would not cover a lab sleep study, so I am forced to take a home test or pay out of pocket (i doubt this is apnea related)

I was prescribed Remeron and Ativaan by my GP to help me sleep, I took them for a couple weeks, but have been off of them for the past week because they became ineffective and I wanted to see if it helped with my brain fog. There was some improvement, but not much.

I am in the process of scheduling an EEG. My GP suspects partial simple seizures. I'm not as convinced.

If anyone has any insight into what i might be going through, I would really appreciate it. I'm becoming quite nervous, my relationship is suffering, my professional life has been completely halted, and I'm feeling pretty helpless.

I have had two visits to the ER, and they bounced me out of there with a diagnosis of anxiety and a diagnosis of insomnia. It was very discouraging.

Thank you for your time and for any help you can offer.

[Diandra]

Hi Coach,

One thing to check is for Lyme Disease. It can sometimes start with strange, seemingly unrelated symptoms.

There is an organization called ILADS and one of their doctors is a gentleman from New York who has treated Lyme disease for decades. He is no longer in practice but has written a guide for patients and doctors to help them with this often difficult to detect and sometimes baffling disease.

On page 10 or so are a list of symptoms. My symptoms were so varied it took yrs for doctors to connect the dots and by the time they did, I was so ill, I could not work either but, I was dx'ed over 20yrs ago.

http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf


Here is a forum to discuss it with others and a Facebook page from a documentary about Lyme Disease. (There is a Lyme forum here on Neurotalk but it is not too active. )

http://www.healingwell.com/community/?f=30

https://www.facebook.com/UNDEROURSKIN


Also, if you tell me what state you live in I may be able to steer you to doctors who know alot about Lyme Disease. The problem is that the blood tests to detect it are not too accurate so you need a doc to make a clinical diagnosis, meaning they listen to your symptoms and other data like where you live and make a dx that way. Many doctors know very little about this illness or pretend they know and are quick to dismiss it. Do your research. Unfortunately it is a very controversial disease because the diagnosis is a clinical one.

Ask me anything....am happy to help. I wish you the best.

Welcome to the NT forums,
Diandra

P.S. If you did get a tick bite, their are other illnesses a tick can transmit to you and that is also covered in the document under co-infections.

[Coach2E]

Thank you so much for your reply and sources.

My doctors literally told me "well, you don't have Lyme's" and then snickered. That was on the first day I talked to them. I have been bitten by ticks, its not uncommon for me to find one or two a year. I live in a very rural area in mendocino county in northern CA. I would love some direction to a Lyme literate doctor, my doctors here think its a myth.

Thanks again for the information! It's very much appreciated!

[Diandra]

Originally Posted by Coach2E

Thank you so much for your reply and sources.

My doctors literally told me "well, you don't have Lyme's" and then snickered. That was on the first day I talked to them. I have been bitten by ticks, its not uncommon for me to find one or two a year. I live in a very rural area in mendocino county in northern CA. I would love some direction to a Lyme literate doctor, my doctors here think its a myth.

Thanks again for the information! It's very much appreciated!

Your docs reaction is, sadly, typical. California has a huge Lyme Disease problem.
Here is the Lyme website that was started in California. I have started you at the section where it gives doctor referrals to doctors who know and TREAT LD but there is a wealth of other info on this site. You have to join. I would also get on their forums and ask for a LLMD(Lyme Literate MD) in your town or county and folks will send a private msg because doctors names are not posted to the public). My best advice is research yourself from the symptoms listings. Lyme Disease can be neurologically devastating and can get into the brain, which happened on both counts for me. I lost my career to it. I did get better but every time the antibiotics were stopped, all my symptoms came back. But, I had it for many yrs before dx.

http://lymedisease.org/resources/referrals.html

Good luck, if it LD, get treated as promptly as you can. Don't rely on your primary care doc. One warning, LLMD,s have gotten very expensive, at least here in CT because since insurance deny treatment so often, they just opt out of taking any insurance coverage. My doc explained he used to spend half his day arguing with insurance companies and the other have explaining to patients why they were denied and soothing them when they cried.

Take care, Diandra

feel free to private msg me if you want to ask personal questions.

[Kitt]

Welcome Coach2E.

[Darlene]

Coach,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene