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julieph85

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Everything posted by julieph85

  1. I understand what your saying but its not about dopamine. It's talking about serotonin. Actually I read in one of your posts that tramadol helps you and you aren't sure why. I read that it increases serotonin and I was thinking that maybe why you get benefit from it.
  2. That certainly could be a possibility but I was actually thinkining it was the sun exposure. I experience big symptom relief from sun exposure and I think it is because of the increase in vitamin d and serotonin
  3. My BP is high too with the adrenaline surges, everyone's is. It is an effect of the adrenaline. Mine goes way up when I stand and during an adrenaline surge it can go 160/100 and stay high for quite a while. That is a normal reaction to a sudden surge in sympathetic activity
  4. http://www.ncbi.nlm.nih.gov/m/pubmed/14709780/ This says their is elevated sympathetic nerve activity in rats after administration of insulin only. If they administered c peptide as well this diminished the response. Maybe the dramatic sympathetic response after eating that we get is because our insulin goes up but we don't have c-peptide to reduce it? Just a thought.
  5. The most relevant section for us is "nerve function" http://ajpendo.physiology.org/content/278/5/E759.ful You have to click on the link to the full article
  6. Ive often wondered why do diabetics get autonomic neuropathy? Turns out they are lacking c-peptide which inhibits neuropathies. Wonder how that plays in our dysautonomia? http://en.m.wikipedia.org/wiki/C-peptide
  7. Alex, midodrine could have definitely triggered the surges in you though because it increases sympathetic activity. I try to take slow deep breaths when it is happening and drink a lot of water. I also wake my husband up and ask him to tell me a short story. I know that sounds ridiculous, but it distracts me from it and slows down my HR. I think the fear i get when it is happening just makes my hr even faster so I like to remind myself that it will be okay and my hr will slow down eventually
  8. Yes they are I hate it! Sometimes I awake from sleep with one and my HR has gotten as high as 180. Very scary!
  9. Yes, and actually that's how you know it's an adrenaline surge- norepinephrine and epinephrine increases blood pressure by constricting the veins.
  10. My psychiatrist wants me to take that. I think I'm gonna try it. It will be interesting if you and I both got improvement from it since our pots seems to be identical.
  11. http://www.jarcet.com/articles/Vol5Iss4/11Lechin.pdf I've been thinking a lot about serotonin. It is a vasoconstrictor and causes flushing. It also has widespread effects in the lungs. A lot of us suffer from IBS or bouts of diarrhea. Serotonin there gain. Ssri's are often very helpful in treating IBS and there is a link between IBS and dysautonomia. SsRi's are also helpful sometimes with pots. What's with the serotonin?
  12. Oh I wasn't implying it is caused by stress. I was just saying that sometimes I wonder if there is a psychosomatic component to it- meaning we are exacerbating our own symptoms without realizing it. Also the fact of it occurring at any given place or any given time without a concscious trigger is not an argument for it not being psychosomatic. In fact most psychosomatic illnesses- such as somatoform disorder occur beneath the level of consciousness for that person- I.e. they have no perception of the anxiety they are experiencing that is causing the physical symptoms. Again, I'm not saying pots is psychosomatic. I agree that there are a ton of physical concrete abnormalities that argue against it. I just said it is something I wonder about given that many of us have high anxiety with our illness.
  13. In every person there is a sudden adrenaline rush immediately prior to waking. However, most people don't feel it. A lot of docs believe a big component of hyper pots is hyper sensitivity to catecholamines. That's why hyper pots people feel this adrenaline rush with symptoms (I do as well). And non pots people do not realize it. This is also why drugs like celexa help the adrenaline rush symptoms.
  14. ,The reason most of us feel better at night is because of increased vagal tone and sympathetic withdrawal. Your SNS is greatly reduced starting in the early evening and progressively withdrawals until early morning, at which point it begins dramatically increasing dominance again. We feel better at night because our PNS is very dominant and have high vagal tone- which causes decreased heart rate and blood pressure. There is a theory that some pots are hyper sensitive to catecholamines, if you have high vagal tone at night you are going to have a decrease in that hypersensitivity. This is also why many of us wake up suddenly in the wee hours of the morning with tachy/adrenaline rush. There is a surge of adrenaline for every person right before waking but your not supposed to realize it. People with pots are hyper sensitive to it and develop the tachy/dizziness. There is a theory that pots is related to parasympathetic withdrawal. This theory is supported by the understanding that there is sympathetic excess in the mornings and PNS withdrawal, and PNS dominance in the evening and at night. There are a few AI disorders that cause light sensitivity, but a lot are not effected by it and some that are greatly helped by UV exposure- psoriasis. I totally agree with the AI theory for pots- I have a high speckled ANA, but I'm pretty positive the symptom improvement in the evening is related to sympathetic withdrawal and PNS Dominance.
  15. How does someone learn about "dr Levine protocol"? Do you have to be a patient of his to try it?
  16. I think the polyuria is actually a result of the polydipsia. Increased sympathetic activity causes excessive thirst which leads to frequent urination.
  17. Im thinking of trying an SSRI because there is a definite anxiety component to my pots. I have taken Paxil before pots and was thinking of trying it again. I'm nervous about taking drugs from this class because I'm scared it is going to make my tachy worse. What has been others experiences with these drugs? Has it helped?
  18. That's very interesting. Sometimes I wonder if this isn't some sort of strange psychosomatic illness. Like a physical manifestation of extreme mental stress or worry.
  19. http://findarticles.com/p/articles/mi_m1200/is_v129/ai_4277496/ I developed pre-eclampsia at the same time I developed pots. Makes you wonder...
  20. You could try magnesium. I've been on it for 4 days and I've noticed a big reduction in heart rate and I feel a lot more calm.
  21. It felt just like when I got my tattoos to me. Painful stinging sensation. They tol me that was normal and my tests results were normal
  22. Me too! I've noticed a big difference. I read it effects your potassium pumps in the heart cells, makes you wonder if we don't have something wrong with that area to begin with...
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