Discussions By Condition: I cannot get a diagnosis.

Total insomnia/neurological disorder- please help,very scared

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: Anonymous
  • July 9, 2014
  • 09:23 AM

Hi, my name's Josh, I'm 25 years of age, and was perfectly healthy before all this, except for some swollen nodes under my ears that would get sore every once and a while. I have a horrible issue here and think I may have a severe neurological disorder or fatal insomnia and possibly dying. This is my third bout with this and I'll explain what's going on now and when it all started. Currently, I haven't slept in 7 days...none. It started 8 days ago with a bad night of sleep, which got worse over the next two days until the point I haven't slept in 7 days. My symptoms are constant muscle twitches, head tilt feeling, strange sensations(like tingling or numbing) on the right side of my head,difficulty concentrating, feeling like I'm bring pulled to the right when I walk, and the left side of my face has a sag to it. This all started in January of 2013. I've had all kinds of tests done and nothing was found: mri, spinal fluid, ct scan, eeg, and nothing was found. I'm so scared and don't know what to do and neither do doctors. I'll explain how it started.

I had caught the flu and had it for about five days at the time. While I contacted the flu, I was also taking a pro hormone called Epistane(anti-estrogenic anabolic), which I continued. It all started on one night(the previous night I had a bad fever). I remember I fell asleep, I then woke up about 2 hours later to a door closing. As I was falling back to sleep I felt these swaying, back and forth feelings in my head. I opened my eyes and it literally felt like my brain was shaking back and forth in my head, I couldn't balance, as my body was shaky and I had to hold on to things. I would force myself to wake up fully and it would stop. Every time I tried to fall asleep that night and the next, It would happen. After that, I totally lost the ability to sleep for 3 weeks.I also had one pupil that was bigger than the other during this time. No matter how tired I was or how hard I tried I couldn't sleep. I developed severe muscle twitches and head tilt, which continue to this day. I slowly got better, little by little, after three weeks
Starting with an hour here and there, then to the point I was basically normal for 10 months, but with the twitches and
tilted feeling. I tried another hormone(stupid of me) and anti estrogens last February and the same thing happened two weeks in. I convinced myself it was the flu before starting. I lost my sleep ability for 1 week that time, but then slowly got better. The muscle spasms and head tilt continued and other than that I felt fine and slept good. Now all of sudden I had a raging total insomnia hit me out of nowhere, but this time there was no brain or body shake feeling. I just lay there trying to sleep and start to sweat even when it's cool. Sometimes my arm will jerk to, along with the spasms. PLEASE HELP! I don't know what to do. I think I may have sporadic fatal insomnia. The only calm I get is that sfi is progressive, I started sleeping fine, this has been going on for 19 months, and started suddenly. I have a bad tilted feeling and feel like I need to hold the keyboard sideways when typing. My metal function seems to be getting worse too. Again, please give me your thoughts. I just want it to stop and I fear for what may be happening. I just can't sleep and my muscles keeps twitching. Hopefully it goes away this time like before and I just start sleeping again eventually, but it's something neurological and sleep just isn't possible. I know this sounds crazy, but it's 100% the truth. I was doing well and took a job overseas. My confidence, ambition, and everything else was all good. just the tilt and twitches was present, but I slept good most night.I'm so terrified here. I don't even have any family around me, which feels horrible. If something bad is happening here, which it certainly seems so, I really want to spend my last days with them. I have a great family and had a great upbringing. I just miss them so much now. I've talked with them and may take emergency leave to go back home within a couple days. May my competence still be with me to do that. This is just some mystery issue that none of those tests could identify. The only other test would be a PET or SPECT scan. I appreciate any response very much.

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12 Replies:

  • I have a son named Josh who is only a few years younger than you. Please go home and be with your family as soon as you can. I would want my son to do that. I don't know what this is, but you need their support and help to get this figured out. I pray that God would heal you. He can do that no matter if the doctor's can't figure it out. ****s died for our sins and took our sicknesses in his "stripes" (wounds from whippings) on his back. The Bible says that "by His stripes we were healed."
    Anonymous 1 Replies Flag this Response
  • If you have been seeing many doctors then I would assume they have ruled out all of the obvious possible diagnoses with the MRIs and such. It's a long shot but it could be Yersinia pestis or the Bubonic Plague. It could have been contracted if you live in the southwest or a dry desert like area and you own a dog that could have contracted a flea and then passed it on to you. It causes the insomnia, swollen lymph nodes and the other symptoms. It's a long shot but not impossible.
    Anonymous 1 Replies Flag this Response
  • I would highly suggest you give acupuncture a try ASAP, I have seen many "miracles" and incurable diseases "cured". I am an acupuncture student and have been to China several times where I have witnessed incredible health changes.
    Medical doctors or doctors in general don't have all the answers, but the good news it that there are answers you just have to seek them out even if it's a journey. Please seek alternative advice and not all acupuncturists are good, make sure they want to help
    Audrygodwyn 1 Replies Flag this Response
  • Would you rule out sporadic fatal insomnia, due to the characteristics of what's going on with me?
    Anonymous 0 Replies Flag this Response
  • If your dreaming and unresponsive at night, are you sleeping? This happened last night for the first
    Anonymous 0 Replies Flag this Response
  • menginitis
    SilverSong 1 Replies
    • August 14, 2014
    • 07:46 AM
    • 0
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  • I had basically everything you've listed back in the summer of 2012. It all stemmed from a spinal tap I got back in April of that year. To make a long story short, I ended up with severe insomnia (6 days of no sleep at all at one point), constant muscle twitching all over, non-stop sweating, tachycardia (140 bpm for weeks), elevated blood pressure (160/90 or so), painful neck cramping, loss of balance (and that pulling right feeling), weird head tingling, and eye floaters. Hope you're ok - KDR.
    Anonymous 1 Replies
    • October 21, 2014
    • 06:45 PM
    • 0
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  • Wow. My sympathies. I've had a sleep disorder too that has wrecked my life. My insomnia story is at www.fms-help.com/insomnia.htm. I am medicated for sleep now but still have trouble sleeping and my sleep is very choppy and broken up. I will pray for you.
    Anonymous 1 Replies
    • November 27, 2014
    • 10:01 PM
    • 0
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  • Hi. Im 24 and Im also suffering the same. 29 days unable to sleep. Even if I use medication, I get a very light unrest sleep. Ive done multiple tests. Doctora dont know what to do. How are you doing?
    Anonymous 1 Replies
    • September 7, 2015
    • 05:00 AM
    • 0
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  • In a same boat male 27 but mine was started four month ago after Cipro course for two weeks. Total sleeping disability and benzo make it worst. Now my immune system deteriorating. My CNS damaged seems irreverseble.
    Anonymous 1 Replies
    • January 8, 2016
    • 02:38 PM
    • 0
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  • In a same boat but mine was started four month ago after Cipro course for two weeks. Total sleeping disability and benzo make it worst. Now my immune system deteriorating. My CNS damaged seems irreverseble.
    Anonymous 1 Replies
    • January 8, 2016
    • 02:52 PM
    • 0
    Flag this Response
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  • I was diagnosed with severe insomnia and am on day three right now. I've hit six days twice and eight days only once. It's usually a weekly marathon of complete sleep deprivation of at least 48 hours without sleep. It's been nearly 4 years since the sudden onset There is no sleep at all when it hits. I'm an otherwise healthy mom.

    I'm sorry that you're so frightened.Try not to worry. You have others with your same symptoms. Maybe we can figure out the commonality that we share to lead us to a cure? If sleep comes on some nights it should be possible to return to normal sleep patterns, right? I don't think that they have any idea what to do with us. There are so few that doctors ever see.

    Please keep me posted on how you're doing.

    Anonymous 1 Replies Flag this Response
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