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Everything posted by jangle

  1. It could be your body is increasing blood cells to combat the infection, which effectively acts to increase blood volume.
  2. That's interesting, it could be the illness triggers a compensatory mechanism in your body, maybe something to do with aldoesterone-renin from the kidney which alleviates your symptoms. I'm not sure about the immune system involvement but there could be something there too. Usually when I get sick I get worse so I don't have any explanation.
  3. After reading your story, I no longer feel any desire to moan about my own symptoms. I know it brings you no comfort to hear this, but your case seems like a severe presentation of dysautonomia. I think you would be best served visiting a Mayo clinic where people who're experienced with your condition can spend a length of time finding the correct management. There are other things that can be tried and I hope they will be of use to you. It's inspiring that you are still furthering your education and pursuing a graduate degree and I wish you all the success you can have there. Please update us
  4. Before my neurologist referred me to an even higher level specialist, I asked him about the potential for brain damage. He replied that the body will pass out before brain damage would occur, but if you land on a heavy object or if someone held you up for about 3+ minutes then you would suffer brain damage. When I went to the even higher level specialist for my diagnostic testing, (This guy was voted the best doctor in America and in addition he is a professor at a top 10 medical school in the USA) he said that the brain has its own auto regulatory system which would prevent damage, but that o
  5. It might be a possibility in some patients with OI. A lot of members here have had echocardiograms which didn't reveal a reduced stroke volume, so I don't think this theory can apply to all OI patients. Also one has to question the issue of causality. For instance a lot of people who have OI might be prone to not exercising, and if they don't exercise for a long time that might result in a diminished LV heart size through deconditioning.
  6. Ok, it's not a cure, but one component that has reduced my symptoms (lightheadedness and headache) is progressive muscle relaxation. I tried to speculate on why this is, going through some journal articles, the most I can come up with is that PMR (progressive muscle relaxation) activates the parasympathetic nervous system which might balance out my autonomic nervous system. Anyways I notice that the amount of my improvement corresponds to the quality of the relaxation exercise. Usually a good relaxation cycle will take between 15-30 minutes of time. For those unfamiliar with PMR, it involves t
  7. In the past I've noticed it's nearly impossible for me to sleep sitting up, as I get more sleepy my brain will shoot this massive wave of lightheadedness my way almost causing me to pass out. However, if I use a pillow I have sometimes been able to fall asleep sitting up. My question is, is this dangerous for us? If our brain's weren't getting enough blood, would it wake us from sleep? Sometimes I've woken up with my head feeling numb.
  8. I think a specific number is arbitrary, but that a large volume of liquid is going to have to be drunk, one way or another. In time I have come to find my bladder possesses super powers! But wow, that first week and my bathroom was my new best friend. Eventually you'll adjust.
  9. Hey Atomic, I know things in your life seem really difficult to deal with right now. But at the end of the day I think we both know that at some time you're going to be feeling better. It's just right now in this moment you have this thing, (we call it POTS) that's holding you down. It's ok, and yes you mention you have anxiety as well. I know how bad anxiety can be as I myself have had anxiety disorders all my life as well as panic attacks, but you know even those things can be treated. However, they can't be treated effectively while you're dizzy and in constant pain from the POTS. So while
  10. Before I knew I had POTS I started a jogging program. Basically I just tried to jog a little bit further than the previous day. I found my body was able to catch a "second breath" sort of speak so that even when I got tired eventually my body was able to acclimate while keeping the same pace. This effect got prolonged enough to where I was jogging around 20-30 minutes a day. Everyone is different so it's hard for me to make recommendations in general. I would say to start slow but to expect your body to eventually acclimate to the exercise. It feels really bad I know, but hopefully in the long
  11. I just got my compression stockings, I've worn them now for about 3 hours and I'm feeling a lot better. My standing HR is now in the 90s as opposed to the 110s, I still feel a little headachey and lightheaded but hopefully these will pass. Has anyone noticed continued improvement with stockings or what you get at first is pretty much it?
  12. I definitely noticed cognitive dysfunction when I first got POTS when I was 17, especially when it comes to working memory and attention. I haven't really noticed a decline since then (6 years now) and I was able to be very successful in college. However, now that I know what I have is POTS, I'm wondering if it's possible to reclaim my previous cognitive function. For people who have gone into remission, did you find your cognitive ability was roughly where it was before you got POTS?
  13. I've read that other people with pots have a postural like tremor. For me, about 5 months ago I developed a postural tremor in my fingers. Whenever I bring my fingers close together, they start to tremor, it seems to only happen when my fingers are close to another finger. I was wondering what was causing this? I'm worried that this is signaling that I have brain damage in my cerebellum and is representing an essential tremor like effect. Has anyone talked to their specialist about their tremors? Could this be related to POTS in another way other than brain damage?
  14. Sorry to hear about your relapse, I'm not too familiar with waxing and waning POTS as my symptoms have been pretty much constant over the 6 year period. It is great though to hear your positive experiences with exercise. I hope that I can titrate up my workouts to where I'm seeing benefits as well although I expect it's going to take several weeks.
  15. Hello all, since exercise seems to be at least one component of getting better I'd like to make a thread where people discuss their exercise regiments, the progress (or failures) they've encountered and a place where we can support each other to stick with our goals. ------------------------------------ I'm just beginning my exercise regiment over again. In theory what we're trying to do is mimic marathon runners. Several studies such as this one http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1498337/pdf/bmjcred00606-0026.pdf show that for fit athletes, their resting heart rate goes down signific
  16. Interesting that the groups performed similarly on the n-back tests while supine. This seems to suggest that neurocognitive dysfunction is not permanent and may be reversible.
  17. Ya, I do think there are some quirky features about this particular study, especially in regards to the inclusion criteria. However, I do think there is a common unifying trait that is shared among all POTS subgroups. That is we all suffer from hypovolemia, and that things such as saline IV's seem to work for the majority of patients with POTS. I was reading about new therapies targeting the renin-aldoesterone axis, however ignoring pharmaceutical agents it is actually well established in the literature that exercise directly influences the renin-aldoesterone axis to increase blood volume. Per
  18. I was reading this study, http://content.onlinejacc.org/cgi/content/full/55/25/2858 which suggested that some patients with POTS might not have dysfunctional autonomic function at all (unless you consider the abnormal aldoesterone to renin ratio to be caused by autonomic dysfunction which I honestly have no idea if it is or not, that's more medical sciencey stuff than I can handle.) I know that POTS is caused by a variety of conditions, but the authors of this paper seemed to convey the message that not one of their patients had autonomic dysfunction. Could that have been a coincidence that th
  19. Edit: My name is Eric btw. I feel so special being a male when it seems (attractive) girls get this condition! I want to thank anyone for reading this, honestly one of the greatest feelings to have is to know what's going on, what to expect, and to have a plan to address it, even if it is totally out of control. Right now I don't feel like I have sufficient information. I'll try to keep this as brief as possible. I started feeling chronically lightheaded around the age of 17, especially upon standing up. Doctors attributed it to anxiety, (I also have two anxiety disorders) and I believed them
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