Newbie With Questions, Sorry If They Have Been Asked Before....

[pink1975]

About a month ago I finally got a POTS diagnosis through a tilt table test. I stayed upright exactly sixty seconds and my heart rate was 170 when they stopped. It felt like all the blood in my body was trying to leave through my feet. Worst test I have ever had and I have had quite a few as most of you have probably experienced too on this odd journey.

ANYhow, I have a couple of questions. My cardiologist said to eat salt and drink fluids. How much salt? How much fluids? Also, do your POTS symptoms worsen in relation to your menstrual cycle?

[imre]

Drink until you're hydrated, and eat salty foods or drink electrolyte drinks so your body can retain the fluids better. Just test out how much you can eat or drink to feel good. It's probably different for everyone. I drink about 2 or 3 liters of water a day. I get salt from eating normal food, and I drink Gatorade pretty regularly as well.

[Guest Alex]

Welcome to dinet pink,

I am sorry you had such a bad experience during your tilt test, but hopefully your dr was able to collect enough info to be able to put together a treatment plan for you.

My dr suggested 1 gallon of water and up to 10 g salt a day. I was able to drink the water, but I never ingested that much salt. Now, by personal choice, I'm down to my normal 2 L of water a day and a regular salt diet.

You might want to ask your dr for more specific details.

Also, from what I read, a bunch of ladies complain about worsening symptoms around their period.

Best,

Alex

[Susanhs]

I was just finally diagnosed too, with POTS with orthostatic hypotension. My doctor said to drink at least 64 oz of water (2 liters?) but didn't specify how much salt. I haven't been able to drink near that much because I have digestive problems too. She also suggested compression stockings over the waist and that seems to be helping some days. So you may want to try those.

I was having even more intense problems during my period and went on a continuous birth control pill, Loestrin 21. I figured my issues are bad enough without my period so why not at least take the additional worsening away. Best wishes to you.

[SpinnyC]

I'd think you should ask your doctor for more specifics on the amount of salt and liquids they'd like you to have. Doctors recommend different levels for different people, and it can be a pretty big variable some people are down in the 3 grams of salt per day range and some people are up at the 10mg of salt end. *Normal* daily salt levels for a non potsy are somewhere in the 1.5 or less grams per day I think.

[Joann]

Yes, ask your doctor about the levels. I actually have my bp rise with POTS, so I do not increase salt, but hydrate 60-80 ozs of water/powerade a day. But some people have said, I need to have the blood volume test, because I may need salt to increase volume even with high bp. So.. ask your doctor. Everyone is so different.

[bellgirl]

My doctor told me to drink at least 64 ounces in the winter, and when the temperature rises, drink an ounce for each degree, but if I have any more then 78 ounces, I start getting bladder spasms, so talk to your doctor to decide what is "normal" for you. As far as the salt goes, I'm like Joann, I was hypertensive, and used to watch my salt intake. Now I just listen to my body, and when I'm thirsty, I will eat some salted nuts with my fluids; if I have swelling in my ankles (fluid retention), I cut back. Some need IV's to get adequate fluid, and some have ports, so they don't have to be needled with IV's all the time, if they are really hypovolemic. So talk with your doctor to see what the best course of treatment is for you.

[corina]

Hi Pink, welcome to the forum!

[AussieOI]

Pink,

I actually am on the pill to put off my periods for a few months at a time. I was symptom free for months as I was putting off my period then I decided to have one and some symptoms came back. For me it is a definite way forward to not have periods for the time being. The pill also increases plasma blood volume so can be helpful anyway if you have low bp.

Aussie

[azmusiclover]

Hi Pink, glad you are here, but sorry you had to join us. Recommendations for everyone are different because our bodies process things in different ways. I live in AZ and it's very dry here so I shoot for about 90oz of fluids during summer and cut back to about 75-80 in winter. I am still playing with optimum. Salt intake varies because of digestive problems for me. I find that I crave salt so I know when I am not getting enough.

When I had periods, they were awful. I have low blood volume and endometriosis so I used to have just horrendous cycles and I would become anemic very quickly which definitely aggravates POTS symptoms. I had uterine ablation done so I no longer have periods and I do not miss them at all.

Good luck with everything! Take it day by day and don't feel like you have to understand EVERYTHING immediately. It's a complicated thing with lots of factors, symptoms and stuff. Hugs!

[Lemons2lemonade]

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.

[looneymom]

Hi Pink,

After my son was first diagnoised, he was also told the same. However, he found he was in the bathroom after drinking more than 3 liters. So he drinks between 2-3 liters a day. It really probably depends on what your body and you can tolerate. As for salt, he does salt his food at meals. He likes using sea salt. He also uses thermotabs because these are buffered. He takes these with his midodrine 3 times a day. He just started with the lowest dose and I took his bloodpressure at different times during the day. Our cardiologist wants his top number to be aleast 110. Its handy to have bloodpressue kit. It allows me to send his readings through internet to his cardiologist. Hopefully, you have found a good doctor to help monitor your condtion. I also keep a spare bottle of thermotabs in my purse in case my son needs more due to his activity level. Start slow with salt if you decide to use salt pills (Thermotabs). Hope this helps.

[pink1975]

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.

Thank you for your informational post. I have experienced many of the additional symptoms you talk about, not just the tachycardia. Right now I am sitting here with a wicked case of brain zaps that I am convinced have to be caused by POTS. I also get adrenaline rushes, odd vision (like things moving that I know are not, such as people's faces being wiggly), wicked fatigue, shortness of breath (some days I can barely walk from my car to my house), and overstimulation (going to the movies is a real trip, I had a total meltdown from the last Breaking Dawn movie, couldn't stop crying for over a half hour, but then again even the Muppets movie made me cry). The good thing is all this stuff used to make me panic, but now I just tell myself its ok, its just POTS. I have had all kinds of heart tests and my heart is good so I know that I can just wait it out and it will be ok.

[Lemons2lemonade]

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.

[jkoconne]

Hi,

I did not read all the prior posts. My doc advised me to drink 90oz of fluid (1/3 with electrolytes and the rest water) and try to reach 10 grams of salt a day. But thats hard for me! and the fluid is on rough GI symptom days too.

The menstrual cycle questions: YES! all my symptoms are terrible right before, during and ease up 2 days after. I have been on birth control to help regulate my cycle. I use to only have one every 3-4 months to keep the flares down but then my neuro said he wasnt sure if that would actually make the times i do have it worse. So im currently on the lowest bc dose (lo loestrin) and have a period every other month.

Hope this helps, and im sorry if the people above have already given similar advice!

[CarrieJessica]

I was told 64 to 74 oz of water and I actually just called my doc because of all my salt confusion. Getting a definition of salt loading was driving me insane. I wrote about salt loading here http://justmildlymedicated.blogspot.com/2013/03/dysautonomia-and-salt-loading.html but I shoot for 7 to 8 grams of salt a day. Especially on 'bad' days.