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Everything posted by Lemons2lemonade

  1. If anyone has time to look into this guy (the vagus nerve) I would highly recommend it. This nerve is strongly associated with syncope, heart rate, and blood pressure. When I took anatomy and physiology in college, my professor told us that syncope is caused solely by this nerve. Now whether or not it is a chicken or an egg in our condition is questionable. However, by knowing about its actions, for me at least, it has been helpful. Syncope may seem to us like the bane of our existence, but it is there for a very important reason, to maintain blood pressure, and sustain life. Our bodies are n
  2. I saw a sleep doctor yesterday who brought up a good point. He asked if the tingling began to occur after beiginning the florinef--which it did, because increasing your fluid volume like we do with salt and what not can cause nerve compression possibly resulting in tingling etc.
  3. yeah, i understand the "asleep" feeling, i've had it before, but completely paralyzed?
  4. The last couple of weeks i have been waking up startled and feeling faint. When i wake up my arms or legs are "asleep" with the pins and needles feeling. Last night i woke up and my hand was locked up, like i couldn't move it-- and it was asleep. Has this ever happened to anyone?
  5. This has happened to me before, a few times and happened again just last night. It's ridiculous. It's like my body is waking me up to faint. I also feel short of breath when this happens. It makes me think of some type of sleep apnea.
  6. Honestly, i have found that this salt loading really does work for increasing bp. I take 2 grams each day. One day, after hearing about what doctor goodman had been saying, i tripled the dose and took 6 grams instead. My bp usually runs in the 105/70 even before i got sick. Then that day, my bp was almost too high 130/100 and i was having really bad chest pains. But i also take .2mg of florinef. I want to reduce the florinef and increase the salt but am waiting until february when i can run this by dr. goodman.
  7. Hi! I'm sorry to hear about your flare-up, never fun. I used to get chest pain really bad, but then after i had been taking florinef for awhile, it went away. Now i just get fleeting chest pains. One thing to note, is that i was put on midodrine for awhile, and while on it, the chest pain was unbearable--so now i just stick to the florinef.
  8. Jackie, this sounds like you also, sister without rash. http://www.nejm.org/doi/full/10.1056/NEJM200003023420906
  9. Okay I did some more research and here are the links. Very interesting! http://www.ncbi.nlm.nih.gov/m/pubmed/11371229/ Says that chicken pox stay in nervous system, and that people who get shingles can have something called posrherpetic neuralgia. It can feel like electic shocks (sound familiar?) And it can last from months to years. Wonder if this has anything to do with peripheral neuropathy?! Also, someone else has wondered this in correlation to free and oh! The link is here http://www.ncbi.nlm.nih.gov/m/pubmed/19520522/
  10. Jackie, that is also strange that they both got it...
  11. Jackie- it must be nice to a certain extent to have a dad who knows.so much about the human body! I feel like his is the problem with a lot of health care providers--no imagination, its nice that your dad is one who does entertain possibilities, we could use more like him. It's like todayvi had to explain to my doc why I wanted a liver panel done--because of the association I have recognized. I think that probably a lot of people who do have anxiety go into Dr.s offices and worry about the what its by asking for really wonky things. But at the same time you go to the mayo clinic, or vanderbil
  12. I get this too with the latent imagery. However, once I thought the whole room was orange for just a moment, it was weird. I blamed it on the methylprednisolone i was taking at the time--wonder now.if.it was the.pots...
  13. Hi! It sounds like you are going through a really rough time right now . Have you ever thought of having a caregiver come in and help you out? They are pretty expensive, but if you were on disability I feel like maybe they would help out with this -I hate being alone and this is one of the main reasons I'm applying. As for the blood clots, that can be very scary and painful. I had flebitis in the hospital so I can only imagine what you must be going through. If it makes you feel any better, I have days like this too where I am sad and depressed. I get really upset about my circumstances. But i
  14. I think if there were one there should be an iv fluid room like an oxygen bar for people with pots--then we would all be feeling our best while there
  15. Thank you! I figure while I'm laid up I can at least hopefully learn something
  16. Hi! I have so many questions for all of you! I am trying to pace myself! Has anyone on here ever had shingles before? Also what were your chickenpox like when you were young?-- caused by the same virus. What's interesting is that after you get over chicken pox, it lies dormant in your nerve cells and can reactivate for unknown reasons. I had shingles on my face when I was around 12. The doctor said it was not only abnormal in placement (most are on the waist but also in age because most people don't get it til they are older. I am told I had the chicken pox really bad though. Was wondering if
  17. Chaos, was it an ultrasound for something else or were they looking for it?
  18. Fiona, that is so interesting about your pulse ox and np cuff, I do exactly the same thing. I think of it as my way of keeping my brain in check. It thinks I'm dying the pulse ox tells me I'm not. Does anyone else use these methods?
  19. If he can't, call him back and ask who can. More than likely he just doesn't want to. I talked to my neuro about an emg after hearing that this might be caused by neuropathy. He said no, you don't have neuropathy. No, I don't have typical neuropathy. It's frustrating.
  20. Hi! I was just wondering if any one else ever gets frightened by their symptoms. I feel goofy asking this and you would think that after a year of this I would be used to it by now, but still every time the presyncope comes on I am absolutely terrified (it takes every bit of will in me not to panic). I've never died before but I imagine that what we go through is very similar to the actual experience i.e losing blood pressure. Also, when you feel the syncope coming on do you try and fight it or just wait back and let it run its course? Can you die from this? Has anyone ever died from this??
  21. I've found that it is difficult for people to understand too. I always tell them that our reality is defined by our perception and mine with pots is a lot different than theirs and it is real to me as the sky is blue.
  22. This happens to me too! I've figured that its not so much a numbness for me as it is a lack of ability to feel thing around me that put pressure on my skin. Hence the floaty feeling. It sure is annoying though, and it freaks me out.
  23. Thank you for posting this! I am getting a colonoscopy next week and was wondering the same thing
  24. i've read some stuff on here about dr. goodman. Anyone who has seen him, what types of tests did he perform to diagnose you?
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