Forgot your password?
in Dysautonomia Discussion
Posted March 26, 2013
yes, Dr. G is great.
Posted March 24, 2013
Florinef will keep it in.
yup happens to me all the time. It doesn't have to do with actually being hot for me, it is more just an autonomic anomaly.
yeah, i know what you mean about the weird wiggly faces, have not had that specifically but i feel like i have had the room do that and or other things. I suspect that weird congnitive stuff is either caused by not enough blood to the brain or dopamine levels being affected.
Posted March 23, 2013
haha i love that little stick guy, such an accurate representation. He does not look like he is having a good time!
Hi Pink, i think the salt and fluids is kind of a trial and error to see what works best for you. As for salt, Mayo recommends 10g. I probably have around 2g. It is difficult to get that much salt from your diet--thermotabs can be bought online and can help with getting enough salt in. I preferred to just mix salt with warm water and take it like a shot--it seemed to work better for me and is much more cost effective than the thermotabs. I also drink water all day. And if an attack is going on i chug a big glass of water at least 16oz and it helps me within 5-10 minutes. I would guess i drink around 1/2- 3/4 of a gallon a day of water. It is hard to get used to at first, but after awhile you get used to it and miss your water when its not there. If i am urinating frequently, which happens at times, i switch to a different fluid with more substance like juice or milk. I am sorry that you came down with POTS, but glad that you were able to get a diagnosis. Water and salt are usually the first lines of defense, and if those don't work, medication can be added to the mix. Some people find relief with beta blockers, florinef, and SSRI's. And it is important to remember that POTS isn't just heart rate, it can affect pretty much anything so try not to panic if weird feelings and things start happening to your body- like out of body type feelings, adrenaline rushes, time speeding up/slowing down, vision changes, anxiety, chest pains, shortness of breath, tingling or numbness, sweating, weakness, fatigue, exhaustion, headaches, overstimulation(sometimes it feels like your brain is going to explode from too much information when music is playing or in a crowded room) lightheadedness etc. Also, understanding your illness and knowing your boundaries can be very fruitful if only to say, it's ok, this is just my pots.
Another thing you will experience is probably frustration because doctors can't really help us other than prescribing medication that only kind of works. Also, Dr.'s work for insurance companies so sometimes you are going to have to push to get tests done --even argue. If a doctor ever tells you that you don't need a test, i just reply, how do you know, no one knows what causes this and a lot of underlying conditions can mimic this disorder. Not sure what you have had done so far, but if you have insurance,(IMHO)you should at least have an Echocardiogram, holter monitor and event monitor just to ensure that your heart is functioning properly--if nothing less than for peace of mind to know you aren't having a heart attack etc. Also, checking things out like thyroid levels, the Brain (MRI) to rule out any brainstem problems, plasma and serum catecholamines(to rule out pheochromocytomas ) along with periodic metabollic panels to check out your levels can be useful in ruling out other diseases. Additionally, ruling out neruopathy is important to limit any ongoing nerve damage. Always, though ask a Dr. as they are the professionals.
Something i wish someone would have told me right when i started getting sick is to recognize that life is going to be different from now on. I spent a lot of time and tears trying to come to terms with that. However, if you recognize that this is the way it is going to be, it gears you up for coping and maximum functionality. A lot of people who get this start losing their functionality quickly, and it is important in my opinion to keep trying and keep your stamina up where it is. Because once you lose it, it is 100X harder to get back to that place with pots piggy backing along with exercise and activities. Pots is kind of a catch 22 because all you want to do is lay down to remove the stress from your body, but prolonged bed rest exacerbates symptoms. For me, i push when i can, and rest when i can't.
As for menstruation, it is normal for symptoms to exacerbate during that time. Mine start kicking in with ovulation.
Things to avoid: Garlic, anything that is a diuretic like coffee(though a cup of coffee in the morning is said to help symptoms), alcohol, stimulants, and meals high in sugar(gatorade has lots of sugar and caused this issue for me) as they can lower blood pressure and affect adrenaline levels.
Also, i had this too a lot and IMHO it is just a part of pots. Its like the body never wants to rest, and finally when it does the adrenaline kicks in and gets things going back again. I did a sleep study with no abnormalities. The one thing i can say is that my SSRI made this go away. And though i was against it at first, pots and no sleep is not a good combo. Seattlerain, i am down in the south sound corridor, and if you ever need help such as an advocate or support, please let me know. I have been playing hardball with my insurance company for awhile. Shoot, somedays you just need someone to talk to who understands. I went to Mayo last year in Arizona and Issy was nice enough to meet up with me. Sometimes it is just comforting to know others are going through the same thing.
hey seattle, i think its the weather...mine have gotten worse in the past 3 days too..
Posted March 22, 2013
The part that i find really interesting about this poll is that vagal manuevers are supposed to reduce the HR and avert faints (allegedly) yet most replied that they are unsure whether or not it actually reduces their heart rate. I have tried this before with no avail, and also answered unsure.
This is not necessarily an adult forum. Thanks misstraci for clarifying. Also, the reason i ask is due to the vagus nerve's innervation of arousal. http://science.howstuffworks.com/life/human-biology/brain-during-orgasm1.htm
Posted March 20, 2013
Wondering how everyone else is doing with this.
Please do not view the following link until voting is completed.
So, when i was in college in 2007 i took Anatomy and Physiology. My professor told us a story about his PhD work at NASA where they studied the effects of prolonged bed rest on individuals. He said that after a week of bed rest they had to rehab healthy individuals because there was so much atrophy they could not leave the facility. A. this shines a lot of light on the negative effects of bed rest
B. For all of you out there up on pots research, i wonder who ran this study...Nasa...OI...Ben levine anyone?
I came down with POTS right around the same time i started taking that course. It is either a small world, or not a coincidental as it seems considering my professor probably had direct interaction with POTS patients.
yes. As far as high hr's with exercise and SOB. Not sure about Orthostasis.
Posted March 6, 2013
Hey all, just read about Progesterone's effects on Aldosterone.I am wondering, anyone ever had abnormal values for these. Also, to the men, have you guys ever had these levels checked?
Posted March 3, 2013
i would love to hear what different parts of the world are doing for treatment and research considering different cultural ideologies and perspectives. Anyone have this info? Rama i would love to hear what China is doing also, any knowledge on prevalence in Australia?
what do you mean when you say high bp? i.e values? Sometimes when i drop low, i get a big BP increase afterwards. For me, that is 130/100 a magic number, because this is when i feel the worst and i also get the tremors. During that time my heart is also racing. Only time my bp gets that high.
Though i would not recommend this to anyone. I have found that smoking helps me at least as far as energy and brain fog is concerned. When i quit for 6 months, i had less energy and more shortness of breath. Something to consider though, is that i think it taxes out the adrenals somehow.
Plain water works best for me. If i am having frequent urination, i will move to something more unflitered, like milk or juice.
Someone took all the studies and bunched them into one. This is one of the most all inclusive articles i have seen yet for this disease. Great to show to someone who wants to know more about pots and also to give to clueless docs--covers the quality of life study with CHF, explains the "anxiety" phenomenon, and also outlines the issues with deconditioning that can exacerbate symptoms.
Posted February 11, 2013
It did not help me. Just wondering if it helped anyone else.
How about this: I'm not dying. Just Suffering on the inside. Which is better?
-low potassium(before ever taking florinef or having pots)
bleeding in your urinary tract is not normal. It could be a UTI but still not normal. This means some part of urine tract whether its your kidneys, bladder, urethra, whatever is exposed. Even if the Dr.'s aren't finding it---it is still there. Your urinary tract and kidneys are very important in maintaining blood pressure...