Blog entries from lnester7

lnester7 has a total of 111 entries.

  1. lnester7
    WOW talking about life changing moments. I have been on this drug for 3 days and I have not stopped, I mean I traveled today and one of the flights was a 4hr, went to work for a bit and I am still going.:lol: I just sit and enjoy what normal feels like, I hope this drug will keep working great for me because I feel so wonderful!!! I kinda stopped the OI exercises, Not sure I need them...
    lnester7, Feb 3, 2013
  2. lnester7
    I have a little more energy but more sleepy at the same time. I have wanted to die from the LDN pain! It was so rough and it took me emotionally to a place I have not been in a bit. But at the same time, I have hope on this drug, Is like even though I am having all these side effects, I noticed I can do much more. Is hard to explain but if I can live and I mean live in the sense of the word...
    lnester7, Jan 25, 2013
  3. lnester7
    So I am up to 20min the twice a day I cheat sometimes. If I have to cook at night there is no way I can do the night session (I count the standing stirring pots as my session) or when I am juicing. NOT RECOMMENDED this is not right, I just don't have all the time to do it all so I am cheating some days. I can definitely see an improvement on my OI symptoms. In the sense that I can stand...
    lnester7, Jan 25, 2013
  4. lnester7
    I decided to update by topic, Too much to cover. So I did not last on LDN 3mg. I got so sleepy and so much body pain that it was unsustainable. So I went back to 1.5mg and felt better. Then when stable started 1 pill and one quarter. It was sooo hard to try to keep awake too at work. This new doses put my brain literally numb!! Was good because it took most of the burning and head buzz...
    lnester7, Jan 25, 2013
  5. lnester7
    So the week ended surprisingly well, Thursday was HARD but that night I up the dose to 2m of LDN and woke up Friday w a lot of energy, so I had a very good weekend, but like when I started I have developed An extraordinary amount of pain. Last night I didn't sleep much, I got a new CPAP mask (which did not work) and the pain was so intense that I would wake up and couldn't go back to sleep....
    lnester7, Jan 15, 2013
  6. lnester7
    New Symptom: as I have angina pain (which is back) I am having kinda the same contraction pain in lungs. Is different and never felt it before, is like if I can't sustain the regular function of the lungs. I also have trachea pain, like somebody is sitting on my throat/upper chest. Breathing is a lot of work. So I broke my normal routine because I have visitors at work, it requires to sit...
    lnester7, Jan 9, 2013
  7. lnester7
    I started ALC w ALA. I got a headache, like a high BP one. Also felt like pressure like in head, and felt very fluish all day. I forgot that ALA keeps me awake but this time it didn't. I will see how well I can tolerate and I will try to make it.
    lnester7, Jan 9, 2013
  8. lnester7
    So there is hope for a life. I went to animal Kindom, FL, USA. Is a theme park, I rented a scooter (kind of a whole family adjustment) and I did OK from 9:30am - 2pm By the time we left the park I crashed for 3hours, but I was just tired, I didn't feel miserable or had other symptoms. I have been traveling so much and I am still going. Have another work trip planned by the end of the month but...
    lnester7, Jan 3, 2013
  9. lnester7
    I have been kinda of crashed but this one was different. I was not fluish (CFS) or Unable to move paralyzed (CFS) nor head buzz need to lay down or will die way (POTs). It was more like I am in so much pain that if I don't lay my neck down will die way. Is a new one to me, I am trying to figure out if the Pain is because is a side effect of LDN or if it is because I am doing Sooooo much more....
    lnester7, Dec 19, 2012
  10. lnester7
    Holly Crap!!! I was doing so well, and I started LDN, first day at night I felt I had the flu, I slept great though :sleep: . It was ok and I went to work next day, it was rough but doable. Second day, I had terrible pain in my breasts and Lymph nodes, fluish. Then I crashed so fast and hard with no warning:aghhh: , I was coming back driving from getting lunch and I parked at work's...
    lnester7, Dec 14, 2012
  11. lnester7
    I am having a good week. Somehow I gained a point ( I am now at 7 from 1 to 10). The biggest blessing is the brain is not as noisy. OMG it is so good to have the brain a little more calmed.:thumbsup: I am surprised after all the traveling instead of been worse I feel better. There is something about the island that just remit my CFS.:angel: I am doing much of the same except I am doing a...
    lnester7, Dec 11, 2012
  12. lnester7
    I saw OI specialist, He prescribe the regular stuff, Compression socks 20-30mg, Salt (6g/d adjust per patient as needed), Water (1lit?), Raise bed 20cm....:confused: The difference was the training.o_O Theory: Dr told me that the brain is trained to shut off (you will pass out) when the blood flow is low (in 6 seconds or so) But that the brain can work longer. So the purpose of this...
    lnester7, Dec 11, 2012
  13. lnester7
    So here is my summary. She told me to be patient and that I will get better. Patience HA! OI: She asked me to do the florinef in half a pill at a time intead of all at once, I started inmidiately and it makes a big difference, she also told me to do an extra dose when I need to be standing longer. I was traveling and thoguht I wasn't going to make it, took half pill florinef as I felt the...
    lnester7, Dec 1, 2012
  14. lnester7
    So week's summary. I was doing so great but I crashed and burned Tuesday, So I had to miss work. The crashed send me to an emotional tailspin. I don't know how I manage to get so despaired when before I have gotten so much worse, I guess ones patience goes down over time. I got better and was in the office all day wed, and have being progressing slowly. I would say I am even higher than...
    lnester7, Nov 16, 2012
  15. lnester7
    Soo I was doing Ok. Then I crashed yesterday. I am not sure is a CFS crash but I think is POTs, But hey who knows is not like I have a Doctor to go to that can help me, the CFS specialist is 2 plane and months away for appointment, My GP just nods sympathetic and say how frustrating for him not to be able to help me. So nowhere to turn for answers. Maybe I can go and get GP to give me a IV,...
    lnester7, Nov 12, 2012