SleepHunter

I feel for those of you cannot get out bed, i really do. My form of this does not appear to be as physically debilitatting as some others but I will tell you that the form I have is mentally exhausting. I don't know if you have gone (literally) 5 nights with (litterally) no sleep. It is the most I have ever gone in one episode but it was a life changing event. I lost 12 pounds across the 1st three days (and nights) with alternating sweats and chills, nausea, dizziness and fog head. The 1st couple of days without sleep are not so bad. But by day/night 3 it starts to unravel. Your whole ability to think becomes compromised and the voices in your head begin to turn into a roar forcing you to question everything you know to be true. By night 4, you are on your knees begging for mercy and wondering why you have become fearful to even try and sleep. You begin to google everything known to man about sleep and become obsesssed with the concept and the science. By night 5, your body is so out of sync it is hard to do anything physical and your emotions have gone bezerk. You question "Am I crazy? Will anyone believe me?" as you cry one moment and laugh the next, all the while wondering if this is real, is it going to continue? What can I do to control it? Why is the adrenaline surging through my body like this? Am I a freak? Meanwhile you have no appetite or desire to do anything. Your spouse and kids begin to think of you as 1 beer short of a six pack and "how am I going to get to work tomorrow and function?" The doctors want to prescribe you xanax, or klonopin, or some other hypnotic that you know will just lead to tolerance and more of the same. Finally you get down on your knees and pray when the Lord reminds you that he loves you and all will be ok.. Yes when you reach that level of sanity - meaining you know the docs can do little for you, nor your family, nor the drugs and there is nowhere else to turn, all of a sudden your perspective changes and you fight back, you change the way you think. You repent the mind and the body does indeed follow (in some instances immediately and in other instances slowly). For me, my body has been following me slowly over the past two years in which I have slowly disciplined the body to listen to my spirit. And of course my spirit is strong and my body is weak and I continue to fear nights without sleep (I never want to go back that close to the edge) but slowly, ever so slowly, my sleep hunts come back successfully and my body is now responding. Not thanks to the Docs (who are awesome, understand and try to help), and not due to the meds, as they only treat the symptoms, but due to my faith. I hope for things unseen and as I do, they become seen because I refuse to give up my Hope because I know this is the only path back to healh for me. I wish there was something I could do to help all of you, especially those that are bedridden and so weak you are unable to function normally. Perhaps the only thing I can do is give you my testimony above believe that speaking out loud my daily prayer or meditation is the only thing I can give credit to that has ultimately improved my health. So for me, just getting my head and heart straight through all this was the issue. I could not get out of bed in my episodes simply because I did not believe I could face the day and fight back. But my faith is strong now, and in turn my body has become stronger. Don't get me wrong, my doctors have been a huge help and they are absolutely necessary to me and my treatment. But without my focus on my faith and winnning the battle in my mind, I would have never sought out the doctors and I would never have gottne out of bed. I don't say any of this to criticize any one else's experience or situation. We are all different, and this is simply what I have experience. I pray that the Lord blesses you all and that he blesses me! I don't know that I will be able to run that far again tomorrow, but I believe I can, Lord willing, and I will try! Hope you all have a great day.

Checked my BP and HR today 167/76 and 67HR!!! Best it has been in months! I wonder if the running is starting to make a difference? No adrenaline leakage today. Completely stable. Wow. I hope it lasts.... I hear ya on the water. I have started drinking gatorade AND coconut water, which is very good for you. Check it out.

Thanks for the replies everyone- Chaos - I am so much more symptomatic in the morning; I feel like another person. After working out last night, I fell asleep ok, but woke up at my usual time, with sweat, at 3am. By 5am I was freezing. Typical. But overall I am rested which is a blessing. I also, as you, have pain between shoulder blades and HR up and down. Now I am nauseous and feeling some anxiety but I must say I don't feel too bad. I do appreciate the hints and I will be aware. I really hope I can go a month or two without an episode. I need to lose about 30lbs!!! Rama- I am going to commit to try and exercise regularly and hopefully my condition wont worsen and I will work up a tolerance. What about water? I am drinking 2 liters a day. Should I be drinking more? Lord I hope not. I spend enough time with the urinal as it is!

Hi All, I ran 6 miles tonight and now my body is in twilight. I can feel it on the edge of an adrenal "leak" but at the same time, tempted to drop into dead sleep from exhaustion. I have been running all my life, was an athlete, a US Army Infantry soldier and have had my experiences pushing my body to the max. Now that this condition has reared its ugly head, I am wondering how it is that I will transition my exercise to deal with it. I really just want to ignore it but I suppose I need to start opening my eyes to the reality that at any moment I could trigger it and be awake for the next 5 days. Have any of you experienced exercise..... triggering an episode? If so, how did you adjust? What cues did you pick up from your body? Were you able to continue a challenging exercise program? Thanks for your help in advance. My situation: tachy, adrenaline rushes, nausea, fog head, dizziness, sweats, cold feet and hands, regular sinus infections sleep apnea, borderline asthma and IBS.

Thanks for this, made me feel empowered. We do indeed have authority over our bodies. Some people call it mind over matter. I too have to tell myself I am going to be ok. The worst for me is when I can feel the chemical anxiety coming on the adrenaline; sometimes I feel it coming on days in advance and it is like a rising pressure - not quite there yet but looming and this can really get to me. I have gotten to a place now where I have to tell my inner self "fine, have anxiety and do what you want to do. I don't care because it is not going to change anything. The sun will still come up tomorrow and I will still be here". It helps and it is as if I rid myself of the anxiety of having the chemical anxiety. Do you know what I mean? It's like you have two kinds of anxiety - the mental comes on when you sense the physical....ugh it is so aggravating just to think about it! I don't have the POTS symptoms you do - I am borderline according to my table test. Most of my issues are related to fog head, adrenaline bursts, and gastro (in fact last night) as well as regular sinus infections and borderline asthma. I seem to be deteriorating in some ways as I age and getting stronger in others. For example, sinus issues are starting to go away but the anxiety problems are getting unpredictable. For the most part, they are under control but I am still trying to figure out how my diet (specfically) is tied to all of this. I guess in some ways, this condition does make us stronger as we learn to cope. I am glad this resource is here. Hope ya'll have a good day today.

I have had this problem for the past two years as my dysautonomia has worsened. I actually went 5 nights in a row without any sleep. It was horrible. My doctor said that for me, my mitral valve prolapse and dysautonomia were being triggered by poor nutrition and stress I was blessed to meet and work with Dr. Paula Moore in Birmingham; she has really helped. Also, I have found through trials that there are some natural methods I used to improve the situation- 1. I avoid caeffeine, sugar, and alcohol (alcohol is hard) like the plague 2. I pursue regular exercise - I now avoid power lifting, as it can throw the body out of balance - I now concentrate on aerobics 3. When I need help falling asleep and staying asleep: Melatonin - natural chemical found in the body I get at the Vitamin Shoppe or elsewhere. Helps me fall asleep. No side effects L-Theanine - natural amino acid found in green tea that calms me down and helps keep me asleep I get at Vitamin Shoppe. No side effects. Passion Flower - natural herb I get at Vitamin Shoppe that helps me stay asleep that I get at Vitamin Shoppe. No side effects Inositol - natural amino acid that calms the body. Helps me stay asleep. Atenelol - beta blocker that my doctor has prescribed that helps block the adrenaliine in my system. I have to take it every day but there are no side effects for me. I alternate the passion flower, inositol and the L-Theanine. I also take MagOx, Manganeese, Zinc, Calcium, Vit b6, Vit b2, a vegetable based multivitamin, Omega 3 all on recommendation from my doctor. I also recommend daily prayer and meditation while identifying and recuding all of your stressors. I tried prescription drugs for insomina (recommendation from GP but they just don't get it!) but they all resulted in tolerance and it was a chore to get off them. Occassionally, I still get the chemical anxiety out of the blue and I can usually trace it back to my diet and lack of exercise. Slowly but surely my body is teaching me what it will tolerate and what it won't. If I stay on the straight and narrow, it seems like I don't have any problems for weeks at a time.This disease really stinks but it can lead you back to good health in a way...... I hope you get to feeling better!!!