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sunnyslumber

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Everything posted by sunnyslumber

  1. Thank-you Ernie and ariella, I found out another drug, flagyl, I was taking also stimulates the sympathetic nervous system so now i'm thinking the fact that my reaction to midodrine was so "strange" may have had something to do with taking this drug (an antibiotic of all things!) also. I'll probably try the midodrine again a little while after I come of this drug. Thanks much for your kind replies, & sorry I took so long to respond! I was run down with school and finals,... too stupid to accept that with this mind i probably can never be of any use to all those wonderful, courageous, people who suffer daily with debilititating diseases like this and CFS/Fibro & many others, so I stayed in school, john
  2. Hey I can relate a lot! A long, long, time ago I was planning to go to mit which has a reputation for being pretty difficult, though probably not as much as oxford, but my mind is so bad now from CFS (or myalgic encephalmylitis) with, i think, some degree of a POTS component, that its hard to do anything much less go to college. Not having my mind work does make me feel very useless also, much more than anything other symptom. Sorry i don't have any treatment suggestions but if I ever find anything really helpful i'll try my darn'dest to let everyone know. sincerely, john
  3. Hi to everyone, I've started taking midodrine at 2.5 mg, 3x a day for about 3 days now. I'm wondering, generally do you notice an improvement in all symptoms that are going to improve pretty much right away or do some improve right away and others take a longer while to notice? I'm asking because I've noticed the racing heartbeat after I stand up has already improved, but some things, like my cognitive symptoms seem to have changed but not in a way that is better. Let me try to explain (sorry its hard for me to to try and characterize one way of not being able to think from another.), usually with my CFS, or possibly POTS, symptoms its hard for me to think as if the your consciousness is filled with static, and its harder to focus on the thoughts you want to, and it also seems like those thoughts themselves are weaker, like, to continue the radio analogy, the signal is also weaker. Now that I'm taking the midodrine it seems like there is no "static" but I can't access or tune into the part of my mind that is capable of extended rational thoughts (can't find the "signal"), almost like my consciousness is not connecting with my short term memory or processing memory or something to that nature. I know i've articulated this symptom badly, but did anyone have anything simalar to this at onset of using midodrine, and know if it means it just won't work for cognitive symptoms? Or if these effects will go away and it will work eventually? Thanks! Sorry if any of the questions are thoughtless ( I do believe in "thoughtless" questions). Sincerely, john
  4. Hi everyone, I posted this question as a reply in my introduction thread but thought it should probably be in a new thread where the subject describes the question. If it is redundent please feel free to delete it. My questions aren't so much about symtoms which are bothersome, since a lot of the links you guys gave me give very thorough descriptions or explanations, but some that seem sufficiently weird that maybe understanding them can give me a greater degree of insight into what is wrong... Firstly, really greasy, sometimes smelly (not a "sweat" smell, more a "putrid" smell, though that is still not a very good description), sweats, especially at night, despite the fact that I have very dry, cracky, skin always on my hands (know that sweats are a common symptom, but the specific character of these sweats is different than what I got before I being sick, hope it doesn't sound too gross though...) Whenever I sleep or put even a small amount of pressure on my skin I get this linear indentations (look like little trenches in my skin) that stay long after the pressure is removed. Sometimes there is flushing too but not always. I always thought this was a strange symptom because it was usually connected with tingling at the same place, mostly an extremity, so I thought it was related to blood flow, like the blood in the cappillaries didn't refill or didn't empty? Thanks much, john
  5. Thanks Emily, I am somewhat familiar with the research of Peter Rowe, and the great work that people like he and David Bell have done on orthostatic hypotension/loss of blood volume in CFS was one reason, besides having totally consistent symptoms, i thought NMH/POTS was definately something to investigate as a major contributing factor, or cause? One symptom, or finding, that I've always considered strange, is that after any pressure, usually my skin makes indentations, or creases, that don't go away for a long while -like the blood is not getting there, or not leaving, or maybe something else- and oftentimes also gets flushed with very little pressure. Does anyone have those things themselves or know if they are found in POTS, or in a certain type? thanks, john
  6. Thanks everyone for your kind replies. My computer totally crashed and wouldn't work with the standard tricks (safe mode, last known good config., hitting with a hammer etc.) so I had to wait until my brother came home from college for the wkend to borrow his. I'll most definately print out alot of those links. much appreciated, john
  7. Hi, I'm new and for a long time I've thought i'd had chronic fatigue syndrome since becoming acutely sick in 2000. I have many of the symptoms such as cognitive dysfunction (bad memory, brain fog, concentration/sense of awareness etc.) fatigue, exercise intolerance, dizziness, shortness of breath, feeling cold, tingling in my extremities and others I'm probably forgetting. Since this is so bad, and there is so little treatment, I always try to browse through what look like new or interesting research articles which might be helpful or give me a better understanding of what's happening. Recently I've found a lot of articles which linked CFS and POTS by having similar or identical heart rate, blood pressure, and EKG interval times. In several of the articles it seems the authors seemed to be arguing that CFS and POTS were either the same or very similar. There also is a case report of a person with CFS being very much helped by midodrine. I don't think I would quite meet the definiton for POTS of having an increase in heart rate of 30 beats or more upon standing, as they did this test on me once, (lie down and then stand up) and though the first time must have been abnormal in some way, though they didn't tell me in what way or how much, the second time must have been relatively normal as thats what the neurologist told me the result was. While none of the doctors on the list are within driving distance for me, my own doctor is generally pretty open-minded to things that might be helpful for treatment, but I would probably have to track down good, relatively concise, information. An article: *that decribes the similarities between POTS and CFS, and summarizes the treatments for POTS (esp, those that may also be applicable to CFS). *that describes the varying subtypes of POTS and each's effect on how it is treated? *what you've found the most helpful resources for more information *any other information I should have handy? Also general questions related to things I've read on this site: *I've always had trouble blowing up balloons (how embarrassing ) since a little kid, which I've read is similar to a valsalva maneuver, would that give me an indication as to if I have some degree of POTS? or a particular type? *Since being sick I've had severe post-exertional fatigue... would that be an indication of POTS or a specific type? Maybe that the sympathetic nervous system is overactive (is that the case in all type of POTS?) *My dad has severe IBS, especially after eating, and had a slightly shortened PR interval, the interval of conduction of the impulse from the atria to the ventricle, could this be due to some disorder of the autonomic nervous system? *Have most people found the "tilting the head of your bed up" thing to be helpful? Thanks! Sorry for any especially dumb questions! Oftentimes its hard for me to tell if something applies to me enough for it to be useful for treatment, or if i'm just grasping for straws... Thank-you, john
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