Aa
5 Months Into POTS and........
I still can't decide what helps the most. I am taking meds, increased my water intake and lay down flat as often as possible when at home....anyone have any other ideas? I am only 32 and don't want to think that this is only going to get worse....thanks for any advice offered...
Thanks for all the info! Much appreciated. I am currently eating a ton of salt ( doctor suggested I try this ) and I am on a medication that is suppose to help my liver and kidneys retain fluid. I was contacted by my doctors today and they have scheduled 2 more tests for me in May...long wait but perhaps worth it? They are going to do a Sweat Test and a blood plasma test. I have not tried to compression hosiery but I will ask about that. Thanks again for your response!!!
Hi! Nice to meet you.
Have you asked your doctor about Rx compression hosiery? Many people with dysautonomia (and POTS in particular) find this to be helpful, though they can be uncomfortable (particularly getting them on and off). The strengths Rx are usually 30-40 or 40-50 mmHg thigh highs or waist high to be helpful with our conditions; note that knee-highs are not generally appropriate because blood can pool immediately above the stockings with knee-highs. Lower strengths than 30-40 aren't helpful for *most* people with POTS or other forms of dysautonomia, but there are a few exceptions so discuss this with your doctor. Many insurance won't pay for lower strengths (Medicaid won't any longer, Medicare doesn't pay for them at all regardless). It is best to be professionally measured/fitted at a medical supply store by a certified fitter to ensure a proper fit; some may need to order custom-fitted ones to get the best fit (some insurance will pay for these if needed).
As someone mentioned, salt-loading can be beneficial if recommended by your physician but always run dietary changes such as this by your doctor first. Recommendations are generally on the order of 5g (5000 mg) of sodium/day but do vary so talk to your doctor about what is right for you. Some patients with dysautonomia are NOT supposed to heavily salt-load, so please do discuss this with your physician. (Sorry to say that 50 times, just want to be clear because it is discussed frequently on this board because most of us have to do it, but some aren't supposed to.) It is often used in conjunction with florinef (aka. fludrocortisone) and fluid-loading to maximize the effectiveness of the florinef.
Strengthening leg muscles improves skeletal muscle return of blood to the heart, so exercise that you can tolerate which builds up your leg muscles can be helpful as well (even if you have to do it lying down!!).
When you do take breaks to lie down, especially if you are feeling unwell, you may want to try giving more pillows to your feet than you do to your head. This can help send blood back from your dependent limbs (legs) back up to your heart, lungs, and brain faster and get you feeling well and energized sooner. :-)
Watch out for heat! Heat (including warm/hot showers) dilates your blood vessels and increases the pooling of blood, exacerbating symptoms. Keeping your environment even a few degrees cooler (buy your family sweaters and slippers for their birthdays!) can often lessen symptoms. Cooling vests are available commercially to wear to help keep your core temperature down. Let us know if you want more info/links about that. Some people eat ice chips or pedialyte popsicles (bonus points for getting the electrolytes from those) throughout the day to help stay cool. Do keep an eye on your extremeties, though ... poor circulation can be an issue in fingers and toes and you may have to watch that they don't get too cold in the winter, especially if you're in freezing temps.
Those are my ideas off the top of my head. We've discussed most of these things at greater length here before (especially compression stockings, hahaha) so if you're interested in any of these ideas or want more info, let me know and I can try to dig up some old threads where you can read more of the discussions we've had about particular ideas.
Cheers,
Heiferly.
Have you asked your doctor about Rx compression hosiery? Many people with dysautonomia (and POTS in particular) find this to be helpful, though they can be uncomfortable (particularly getting them on and off). The strengths Rx are usually 30-40 or 40-50 mmHg thigh highs or waist high to be helpful with our conditions; note that knee-highs are not generally appropriate because blood can pool immediately above the stockings with knee-highs. Lower strengths than 30-40 aren't helpful for *most* people with POTS or other forms of dysautonomia, but there are a few exceptions so discuss this with your doctor. Many insurance won't pay for lower strengths (Medicaid won't any longer, Medicare doesn't pay for them at all regardless). It is best to be professionally measured/fitted at a medical supply store by a certified fitter to ensure a proper fit; some may need to order custom-fitted ones to get the best fit (some insurance will pay for these if needed).
As someone mentioned, salt-loading can be beneficial if recommended by your physician but always run dietary changes such as this by your doctor first. Recommendations are generally on the order of 5g (5000 mg) of sodium/day but do vary so talk to your doctor about what is right for you. Some patients with dysautonomia are NOT supposed to heavily salt-load, so please do discuss this with your physician. (Sorry to say that 50 times, just want to be clear because it is discussed frequently on this board because most of us have to do it, but some aren't supposed to.) It is often used in conjunction with florinef (aka. fludrocortisone) and fluid-loading to maximize the effectiveness of the florinef.
Strengthening leg muscles improves skeletal muscle return of blood to the heart, so exercise that you can tolerate which builds up your leg muscles can be helpful as well (even if you have to do it lying down!!).
When you do take breaks to lie down, especially if you are feeling unwell, you may want to try giving more pillows to your feet than you do to your head. This can help send blood back from your dependent limbs (legs) back up to your heart, lungs, and brain faster and get you feeling well and energized sooner. :-)
Watch out for heat! Heat (including warm/hot showers) dilates your blood vessels and increases the pooling of blood, exacerbating symptoms. Keeping your environment even a few degrees cooler (buy your family sweaters and slippers for their birthdays!) can often lessen symptoms. Cooling vests are available commercially to wear to help keep your core temperature down. Let us know if you want more info/links about that. Some people eat ice chips or pedialyte popsicles (bonus points for getting the electrolytes from those) throughout the day to help stay cool. Do keep an eye on your extremeties, though ... poor circulation can be an issue in fingers and toes and you may have to watch that they don't get too cold in the winter, especially if you're in freezing temps.
Those are my ideas off the top of my head. We've discussed most of these things at greater length here before (especially compression stockings, hahaha) so if you're interested in any of these ideas or want more info, let me know and I can try to dig up some old threads where you can read more of the discussions we've had about particular ideas.
Cheers,
Heiferly.
Have you tried having a lot of salt every day? You can do this either by eating really salty foods or taking salt pills or something like that. That is pretty standard treatment for POTS so it should help. Hope you feel better!!
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