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What Is Helping Me With My Pots *Please Share This To Help Others*

I had a pretty active life style, waking up at 5am to go to high school everyday, participating in a fitness club at my school, singing in the school choir etc. I graduated with honors from my high school, and everything was going great. My plan was to start college in fall 2012. Then, in June of 2012, I was at a job interview and all of a sudden, I felt lightheaded and almost passed out. I thought I just needed food and rest, and I'd be fine. But these incidents kept occurring. After countless trips to the Dr., four trips to the ER, someone finally listened and I was admitted into a hospital. I was then diagnosed with POTS.

I was taught that with plenty of water, exercise, and salt tablets, my condition would improve. This was true to a certain extent. My condition was better than it had been, but I could barely sit up in a chair for 2 minutes without feeling dizzy. (Plus I was peeing every 10 min, which wasn't fun). I decided to be more proactive about my condition, since it felt like I wasn't going anywhere. After plenty of research, and much trial and error, I have made remarkable improvement. I am now able to sit up for hours at a time, and I am able to work-out etc. Here's what I'm doing now:

1. Salt tablets- Two 1 gram salt tablets, twice a day. (It's a lot, I know)

2. Drinking plenty of water- About 1 gallon per day. This seems like a lot but since the average person should drink half a gallon, I do double because of all the salt I am taking. It's about 4 liters of water.

3. Exercise- I started off walking for 10-15 min a day. Then I gradually increased my workouts, with jogging and other cardio workout videos I found on the internet. The goal is to get your heart pumping. (It's not like POTS patients have to do a lot for that to happen lol) Make sure you do strength training, it's important for those muscles, especially the ones in your legs, to be strong. I've found that pilates is a great help with this, and a lot of the pilates exercises can be done while lying down. Do not push yourself past your limit, once you feel dizzy, you should stop. At first, you won't be able to do much, but if you persist, you will get stronger and see improvement and heightened confidence in yourself.

4.Circulation and Vein Support- I think this is what made so much of a difference for me in so little time. I've started to take this natural medicine that helps blood circulation. Once I started taking the pills, it took about 2 weeks for me to feel a difference. It's called "Circulation and Vein Support for Healthy Legs", it's primary ingredient is Diosmin and it has natural ingredients like grape seed, pine bark, and butcher's broom. The company Pro Caps Laboratories and I believe you can order them from www.ProCapsLabs.com. It's AMAZING and I strongly recommend it.

5. Healthy diet and vitamins- Currently I'm taking multivitamins, B vitamins (for strong muscles) and vitamin C. Also, make sure you eat your fruits and veggies, and most of all, be balanced in your diet. Never allow your sugar to drop, and always have a small snack with you in case you can't get food right away.

6. Avoid stress as much as possible- Anxiety exacerbates the symptoms. Find things to do that give you joy. If you aren't in a physical state where you can go out and associate with people, have them come to you or keep in contact with friends via phone, email, etc.

6. Be optimistic- If you follow these steps, you should see at least some improvement. I'm not a doctor, I'm speaking from my own personal experience. I wish all of you the best and I hope that soon, for you and me, POTS will be a thing of the past, and we can move forward and enjoy our lives :)

Kinakierra Kinakierra 18-21 6 Responses Jan 6, 2013

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These things have all helped me, except for the specific supplements. I've been on others. I want to add to your list thigh high graduated compression stockings. My doctor gave me a prescription for some, and they help a lot.

Hi I find your comments regarding Diosmin fascinating. I have thought about trialling it but I was a little concerned that the increase in calcium channel activity might make me feel worse. However your results are reassuring. I have tried butchers broom and had some success although I found over time that tolerance was an issue.
Would love to hear more detail. tahnks

Did your doctor ever put you on florinef? I was just diagnosed, and that's what I am on. It seems to be helping a little.

Hi, no. I am currently in the process of switching drs. My previous one doesn't know anything about POTS. The only things that I am doing are in the article, no additional medications.

I am going to the Cleveland Clinic at the end of March. They have a group of doctors that specialize in POTS. So I am hoping they'll have more insights as to the best way to treat this condition. I am feeling a little better, but I am on a medical leave from work. My job as a second grade teacher requires a lot of energy, which I used to have and then some. I just don't know where it went? I am trying to be positive. I am glad at least I can connect with others that are going through the same thing. I haven't had a spell in 3 days. I just want to go through a week without one. I am on Flourinef and a beta blocker. I drink about a gallon a day. I try to eat small meals every 2-3 hours, and I've increased my salt intake. I've been able to floor exercises and walk around for about 10-15 min. Usually I don't feel good until 1 or 2 in the afternoon.

I kinda wanna reply to a little of everything between the story and comments discussed rather than individually replying and repeating myself a lot. I also want to add that I will be posting a new story and it will help shed some light on anything I say here that may not be fully understandable. Anyways I wanted to begin first by saying that it is great Kinakierra that you found something that works for you and glad you could share because hopefully someone can find success using your experience. Unfortunately it's not for everyone though. I have a pretty bad case of POTS which will be explained in my new story but I have been one of the few "blessed" with blackouts. I blackout quite often and there is no way of knowing when it will happen and no way of avoiding it when it does. So exercising is definitely a no no for me. I have done simple leg exercises but that's about my limit. When your limit to push yourself while standing can lead to blacking out it makes it dangerous and difficult. I technically consider it that I actual don't have a limit per say because when I feel an episode coming on I have to immediately sit down. Unfortunately sometimes I don't black out and sometimes I do. So my attempt to avoid blacking out is not full proof in that sense, however, if I don't sit down I always black out so it creates quite a predicament for me. I noticed mention about a neurologist and whether you should get one and you thought it seemed many sufferers do. If you suffer from headaches or migraines you may want to. Sometimes the effects of our blood pressure causes certain strains on the brain which is probably why others go. I suffer from a constant migraine which I have had about one and a half months straight with no relief. On top of it when I blackout my migraine only gets severely worse for quite sometime until it eventually subsides back to the level I deal with daily. In process of beginning treatment for it so just hoping the very first migraine med works.As for different things being done when an episode occurs, I am so happy for all of you who have a successful plan of action that works for you. My situation seems quite a bit different overall in regards to the signs, symptoms, and actions that can be taken but if anyone has any miracle plan I would definitely love to hear it. I walk around on and off most of the day and get dizzy and lightheadedness within a minute, but to make it anywhere I must walk with my back arched and head facing down. This allows for the symptoms to take a little longer to fully effect me so that I can go further distances before needing to sit which then leads me once again to that uunpredictable outcome. If I feel an episode getting worse and I do not instantly sit down, meaning literally stop and sit exactly where I stand, I will instantly black out. After enough times of it I decided to try a few things like to adjust the speed and/or execution (how fast I sit and how I do it, for instance, I lean down on one knee first rather than bending down and using hands for balance) to see if any variation of those things affect whether I black out or not. Unfortunately I found no difference in the outcome of black outs to no black outs. So for me all I can do is continue to sit when I need too in order to avoid a guaranteed black out and just take my unavoidable chances that offers hope of not blacking out. In the end, from all I read, it almost feels like I experience what most of you consider your "episodes" all day long on a normal basis because the way many of you say you feel during episodes is the way I feel 24/7 and to me, I considered my blackouts my episodes. So essentially I am left with only one plan of action I can take and just hope that particular time it works.I wanted to acknowledge Kinakierra on the excellent way you deal with an imposing episode. I am however somewhat surprised that hopping up and running works for you, and in fact how you can even do so but then again each persons situation is different. The level of severity, the cause of your POTS, whether or not you experience any "relief" periods, and the overall General symptoms all uniquely combine in numerous ways to ultimately determine what each of us are capable and incapable of doing, what makes us all different among this illness, and as a result it also determines our limits which range with each individual. You are fortunate that your limits allow you such freedom in an illness that takes so much away.Back to things that could be done in regards to episodes, just simply acknowledging an episode and having a theoretical plan is a great way to prepare and increase self awareness. Almost all POTS sufferers first thought should be to sit or lay down, but if your capable to follow through, it makes it even better to be specific on the place your sitting and what works best for you. if elevated legs work as with Kinakierra, then do what you need to be sure that's an option when you need it. If your fortunate enough to be able to recognize as early as possible to where you can actually develop a more extent plan, that's even better. That's one of my biggest frustrations is that I have no power over blackouts and am limited to one plan or choice only. I do everything exactly the same whenever I reach near that point where I am avoiding blacking out and it just doesn't work all the time. I don't know. I definitely want and need to get my new story on here because there will be a lot of things I am putting in it that is interesting....plus I have an update on my condition which gives some insight that may be useful to others. And quite honestly, the main reason is that I am in some serious need of support, advice, encouragement, .

Hi, I'm glad that you appreciated my article. I understand that what I said in my article may not work for everyone, I just wanted to share my experience in hopes of helping other people.

It seems like your case of POTS is pretty severe. Although I have never actually passed out myself, I have been EXTREMELY close to doing so.

I wanted to clarify some things that I said earlier in light of what you said in your comment: "I am however somewhat surprised that hopping up and running works for you" and " You are fortunate that your limits allow you such freedom in an illness that takes so much away." I want to make it clear that what I'm doing currently to help me deal with my POTS isn't what I was able to do before I was diagnosed, or even for a while after I was diagnosed. At my worst, I couldn't even talk to someone while lying down without feeling faint or walk a few feet down the hallway to use the restroom without feeling faint. When I was at the hospital, the physical therapist wanted me to walk, but I couldn't do so without assistance. So, before she even tried to get me out for a walk, she had me do some bed exercises, (ankle twisting, leg lifts) things I could do while lying down. As I got stronger, the therapist gradually increased what I was doing which eventually led to walking. By the time I was discharged, I could walk for 10 min without feeling faint. So, as I got stronger, I increased what I was doing, and yes, now I am able to jog and do cardio workout videos. But, that was not always the case. I'm am still limited in what I can do, though not as limited as I was a few months ago.

I'm sorry to hear that you are suffering so much. I think that in order for people with POTS to feel better, they need to be open-minded and try different things until they find something that works for them. For me, it wasn't until I was more proactive that I found some relief with this condition.

I really appreciate you sharing your story as I'm sure many other people are, no matter what their particular situation may be. Your story can give hope to many people. I am so happy for you that you were able to perservere and make such astonishing advancements. Unfortunately my case is very severe and among an illness that is not common, I have the most uncommon form. If you get some time, I posted a story today that details my situation so you may understand my position. Please do so if you can because until you understand where I am coming from, you will have difficulty understanding my response to things. You are a very positive person and I am very happy for you and appreciate you taking your time to connect with others similar to yourself.

After I replied to your comment, I went to read your story. I wasn't exactly sure how to reply at first....Your situation is very different from mine since you got POTS as a result of your pregnancy and the fact that your POTS happened so suddenly.

Although I'm not a doctor, and I'm still learning about the condition myself, some of the things that your doctor told you bothered me quite a bit. For example, telling you that your situation is hopeless or that you can "go see other doctors, they will tell you the same thing I'm telling you." I'm not an expert, but what I've learned from dealing with doctors within the past year, is that you should ALWAYS get a second, third, fourth, etc opinion. There are many doctors out there who use their knowledge and status to make their patients feel inferior or unintelligent. After hearing from many doctors that "it's all in my head", "I'm not taking care of myself properly", or even "you feel this way because you are taking vitamins" (??? crazy right?) I continued to bang down doors until someone finally someone listened, and I was able to get the help I needed.
Basically what I'm trying to say is, don't give up hope, continue to fight for your health. I find it extremely hard to believe that your case is completely hopeless and that there is absolutely nothing that can be done to help you feel better. (Through my research, I've found that many POTS patients find that taking medicine actually makes them feel worse. You might want to try going about healing this the natural way, since it seems that your body doesn't respond well to the medicines.) I hope you find and get the help you need. I've learned that just because someone has a medical degree, it doesn't mean that he/she knows exactly what's best for you. Sometimes you have to take your health into your own hands. My suggestion is to learn as much as you can about POTS, and to seek out doctors who have great knowledge about the disease, or who is at least willing to learn about it and work with you.

Thank you for reading my story and giving me the advice. I replied to a comment left on my story that would pretty much satisfy my response to you instead of me retyping it all here. Please take a look at it. It includes everything that would also pertain to this response. You can reply where you like, either here or to the comment with my story. I do appreciate your input and taking the time to do so.

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Your story is not only well thought out and extremely informative, so are your comments. You deserve a million rate ups!

aww, thanks :) I'm just happy to help ^_^

Are you on any meds? My doc prescribes me meds and none of them have worked I drink so much water and try to keep my salt up....what are your symptoms? I just am trying to get some insight it seems we all read eachothers stories but nobody speaks lol

I was prescribed vasoconstrictivemed and then adderal ... But honestly I find the most improvement with water intake.

Yeah my doc wants me to try Zoloft now I'm kinda nervous about it with working so much and I drive for a livin it's hard to trial and error meds have you guys ever tried it? Do you need salt tabs perscribed? And do I need a nuerologost? Seems a lot of people with POTS have one

Hi, no, other than the natural circulation medicine I talked about in my article, (which you should definitely try if you can, it's amazing) and salt tablets, I am not on anything. When I did my research I found that many POTS patients who take medicine actually end up feeling worse. The best way to feel better is to be as active as you can, drink plenty of water, and keep your salt levels up. My symptoms are/ were extreme headaches, lightheadedness, dizziness, nausea, frequent urination, (at my worst, I was urinating every 5-10 min) pounding heartbeat, rapid heartbeat, chest tightness, shortness of breath, weakness, fatigue. It's important to stick to a strict routine of exercise, (even if you can't do much right now). I was told to practice sitting up, even if I do feel a little dizzy. Once it gets to the point when you can't take it anymore, you should lay down. But try to sit up as much as possible throughout the day. Also, I have found that lying down with my feet elevated above my heart helps. This helps the blood flow to your head. I sleep with my feet elevated on pillows. I have also found that wearing compression stockings or socks help with symptoms and help prevent blood from pooling in your legs. Hope this helps :)

I have elhers danlos so my experience is probably different than others. I have never tried Zoloft. I think if POTs is a diagnoses you should be fine with a qualified cardiologist.

Got to agree that compression garments are also helpful.

Thank you :-) I will def try these things...I work pretty physically getting in and out of my car and as far as meds they've all made me worse I feel better without them but when an episode happens it's pretty bad I shake pretty bad and get very cold. Where do you get these salt tables? It feels so good that you are actually responding not to sound corny but nobody ever responds or helps and this is what this site is for...but yeah I joined a gym to get more active and get my heart pumping more besides at work. I'm a very dehydrated person I'm rarely thirsty I force water down my throat my doc says drink at least 2 liters a day and keep my salt up...what do you do when you have an episode?

Oh and is the circulation meds over the counter?

I drink way more than 2 liters. I don't take salt tablets.

No problem, POTS is one of the most horrible things I've ever gone through, and I do not wish it on anyone, not even my worst enemy lol. When I was first diagnosed, I was so frustrated and didn't know where to turn, so if others can benefit from what I have learned, that's great :) I forgot to list that symptom too, I used to shake alot, but only in my right arm. (weird right?) I don't get cold, but I do get extremely hot, like hot flashes I guess. I would also feel heat on the top of my head and in my face.
I get the salt tablets over the counter at CVS, but you can probably get them over the counter at any pharmacy. Glad to hear you're working out. It's VERY important to keep hydrated, I cannot stress that enough. The last episode I had happened because I was dehydrated. Before POTS, I barely drank anything throughout the day, so when I was first diagnosed, it was hard to force myself to drink water. But, eventually, you will get used to it. Now, I can't go anywhere without bringing water. And I have a huge half gallon bottle that I carry around with me lol. I drink about a gallon a day. I try to finish half a gallon by 3pm so I can finish the rest by bedtime.
When I have an episode, the first thing I do is find somewhere I can lay down with my feet elevated. Usually, if I'm out somewhere, that place is in the back of a friend's car lol. Then, I drink a huge amount of water and just rest there until I feel a little better. Sometimes, if I don't feel better after lying down for a while, I get up and force myself to do some kind of activity. Walking, jogging etc. This helps to get the blood flowing which in turn helps me feel better.
Make sure you don't go long with being hungry, that can make you feel worse. I've learned to tell the difference between a "POTS headache" and a "I need to eat headache" lol.
I believe you can order the pills from the website (which you can find in my article). You might be able to find them in some natural medicine store, but you won't find them in your traditional pharmacy. I think I'll post a picture of the pills so people can see what I'm talking about.
Sorry this message is so long, I just feel there is so much information that needs to be shared lol. Hope this helps too and if you have any other questions, don't hesitate to ask. :)

yeah, I think that if a person doesn't urinate all of his/her fluids out to the point of dehydration (like I do) he/she might not need salt tablets. I take them to help me retain water, because if I don't, I end up peeing every 5 min regardless if I'm drinking water or not. But, you're right, it's important to drink plenty of water, I aim for 4 liters a day.

oh, I just asked my friend who introduced me to the circulation pills, and she said she does not know of any store that has them. Try www.procapslabs.com. You can order online or on the phone.

" I barely drank anything throughout the day, so when I was first diagnosed, it was hard to force myself to drink water. But, eventually, you will get used to it. Now, I can't go anywhere without bringing water."

That was me!

I am now in the habit of just drinking throughout the day, especially before I get out of bed or am doing activities that involve a lot of up and down.

My last episode was in a changing room...people who don't have pots don't realize how much 'up and down' one does in the simplest of activities!

Thank you ladies so much I'm going to try the salt tabs and try n get te circulation ill look on that...:-) it was nice to hear from somebody finally..all of us with POTS should keep in touch to tell our success and thoughts every little bit helps and gives me more and more help thank you I can't wait to see if this will help :-)

Lol, yep water is a must. My last episode was during an evening meeting at my church. Yeah, people don't understand...They also don't understand that I can have good days and bad days...If one day I appear to be fine and doing normal activities, the next day I basically crash.

That's how I am too and it's the worst while I'm at work because there's not much I can do at work to help me. But I have good days and bad days I just can't wait for the day I can have good days everyday but I pray to GOD everyday and keep a smile on my face and keep pushing through this and hopefully one day we can tell our PAST stories to the people who also suffer from this horrible disease

don't forget the water lol. If u start the salt tablets, you're gonna have to drink twice as much as the average person. Also, if you get the pills, take them religiously. It might take a while for you to feel a difference because natural medicine takes longer than regular meds. It took two weeks for me to feel an improvement. And yes, all of us should keep in touch, we need support :)

Wouldn't it make u more thirsty? I would think so...but is there any negative results of the salt tabs?

If you don't need it, I suggest you don't take it. Do you have problems with retaining water? For me, if I don't take salt tablets, I will urinate until I'm dried out lol. But literally, in the hospital the doctors told me I was peeing out more than I was taking in. I was like positive 2 liters or something crazy like that. I don't know how that's possible, but oh well. Anyway, unless you have problems with retaining water, I wouldn't suggest that you take the salt tablets. It's A LOT of salt, so for a person that doesn't need it I would imagine that it's not a good idea. If you don't have a problem with retaining water, I would suggest just adding extra salt to your food, and eating salty snacks, like hard pretzels. But, you have to make sure you drink enough water to compensate for all your salt intake.

Ok that makes sense no I don't have any problems retaining water I pee pretty average lol I drink a lot of water I prob urinate about 4 times a day at most...so I don't think I have an issue I do add extra salt and stuff to my food I just gotta get used to the water!! What about Gatorade? Have you heard anything on that?

Sorry I'm asking you so much you just seem like u know a little but more than me about it :-)

lol it's no problem :) Yeah, Gatorade is fantastic because of all the electrolytes in it. I forgot about that lol. Go for it :D

Thank you :-) you've been a huge help

You're welcome :)

I have loved all this positivity and tips of what works for people! I wrote on here a few days back and noone replied its so much better with the right support to help each other :D

I was diagnosed at Cleveland clinic after passing out on a tilt table test with a blood pressure of 92/44 and a heart rate of 180 lol, they have a group of doctors there that specialize in POTS. I was sent home being told to drink two liters of Gatorade a day. This was a miracle for me! I felt so much better and didn't pee out all my fluids nor did I pass out. HOWEVER, it's been twenty months since and since starting the Gatorade I was diagnosed with Intersistial Cystisis, basically something burned out the lining of my bladder, and then my once perfect not one cavity teeth developed 13 cavities! What caused it all? The acid in Gatorade!! My doctors here told me there is more acid in Gatorade than soda and coffee combined.
So while it worked I obviously can't continue it. I ordered some trace minerals electrolyte pills to replace the Gatorade, I am hoping they help, and don't bother my stomach because I quite liked not passing out lol.
And yes I know it's hard but working out helps a lot too. Strengthening your legs does wonders. I started out super slow, and you build up. But when I don't workout I notice an increase in symptoms.
The doctors at Cleveland clinic are telling all their POTs cases to drink Gatorade but not telling them what it can cause. I was given no others treatment options. Just two liters of Gatorade a day plus water and working out. I really feel they should be warning patients of the huge side effects that much Gatorade can cause, the last thing we need is more issues!

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