Newly Diagnosed With A Few Questions. :)

[Hello Darling]

I was just recently finally diagnosed with POTS and IST. I saw a doctor but he said he's not the POTS specialist so he's trying to get me in with one of the doctors he works with who is the POTS specialist. In the mean time this is what he wants me to do. The doctor I saw (electrophysiologist) prescribed florinef to start with (0.1mg) along with lots of extra salt, Powerade and exercise. I have a few questions and I thought I'd ask the experts (all of you dealing with it in real life.

Florinef: How long before you started to see improvement? What sort of improvements did you have from this medication?

Powerade: How much do you all drink each day and do you also drink lots of water?

Salt: How do you add salt to your diet? Any tried and true foods or recipes?

Orthostatic exercises: I have no idea what I need to be doing or where to start.

Do you all deal with feeling like you are freezing or extremely overheated often?

Do you all feel nauseous often?

How do you deal with the guilty feelings of not being able to do everything? I have 4 kids and I've been really struggling with this. What I typically do is go full force running around to get things done until I burn myself out and by the end of the day I'm so sick and tired that I can't even function and then for a day or two after that I feel like I have to recover from my productive day. I think I need to figure out how to accept that things are not going to be normal and start to find a way to go slow and steady instead of denial and then falling apart.

Or am I the only one who deals with these feelings? If so.. forget I said anything...

[RobinB]

Welcome! You are not the only one! It takes awhile to accept our limitations. I'm still working on that one myself. I only have one child so I can't imagine having 4. My son is learning to do a lot more things for himself. He also takes pride in having a chore list and I constantly tell him how I proud I am of him which I think makes it easier for both of us.

I'm not medicated so I can't comment on that. I might drink one gatorade a day but mostly just water. Lots of water. For salt if I'm desperate I will literally eat potato chips and pour salt all over them. My friends think I'm crazy when they see me do that! But it helps quickly. I also have pretzels around all the time.

The recumbent bike has been the best way for me to get exercise. I can do it sitting down to help keep some of the symptoms at bay. Start off slow and take breaks if you need them.

[dancer65]

Hi

I still get very frustrated with myself at times at my limitations but I am getting better at accepting it My husband and I spent a couple of weekends sorting out our house to make it easier for me to manage by avoiding bending all the time.Best of all he now knows where everything is ?

I had very low BP which is now better since taking florinef .I saw a small Improvement in the first week but took about two months before the side effects stopped backache and headache and had to increase the dose to get BP up and more stable but I am glad i stuck with it as the dizziness is greatly improved , doesn't seem to have helped any other symptoms though.

I really try not to have extreme temperature variations as this really affects me and I wear layers which are always on and off like a yo yo . Bedtime is the worst for me I get so hot as soon as I lay down still haven't found a solution that helps

Best wishes to you !

[shathaway0811]

Hi!

So...

1. I drink gatorade constantly. I would suggest drinking the low-cal gatorade so you're not getting all the extra sugar which can make anyone feel a little crappy (and be an unnecessary source of empty calories); the green kind is my fav! People with POTS tend also to be dehydrated often because of the need for salt we experience, which, as explained by my PCP, causes us to need to drink often which causes us to go to the bathroom more frequently. I feel a HUGE difference in my symptoms when I'm not drinking enough. Ever since I was a kid, my friends have poked fun at me for constantly having something to drink in my hand. Even my professors in college would comment on it haha. It wasn't until I knew I had POTS that I knew why!

2. Which leads me to the salt question... I have ALWAYS craved salt. For as long as I can remember. Premature hypertension runs in my family, so my father (who's a cardiologist and has genetic hypertension himself) would keep my siblings and I from adding salt to anything; it wasn't until my blood pressure started consistently being recorded between 90-100/60-80 at the doctor's that he stopped doing that lol. I got lucky and avoided that gene All of that is to say, satisfy your salt cravings!! I always have salty snacks with me at work and tend to add extra salt to whatever I eat. My boyfriend thinks I'm crazy but it helps a lot. Whenever I start feeling kind of woozy, I try to eat/drink something with a lot of sodium in it. Pretzels and hummus is a great healthy snack with a high sodium content; salted peanuts are as well, but are a little more high in fat. I would look up recipes for those with low blood pressure, and see what you could find.

3. No idea about orthostatic exercise... I know that cardio is good in general, though.

4. YESSS!!! My temperature is always FREEZING or BURNING UP. Whenever my family is warm/comfortable, I tend to be freezing (ice cold hands, feet, nose, and ears) and I also am EXTREMELY sensitive to heat. I frequently feel like I'm going to pass out in the summer here in SC if I stand outside/exercise outside for too long when it's really hot. I also sometimes get night sweats.

5. GI issues go hand-in-hand with POTS - all part of the dysautonomia spectrum. I hadn't really ever experienced chronic nausea until recently as I don't ever throw up. But it has reared its head within the past 6 months or so. No vomiting (though I wish I could because that helps to feel better), but lots of GI discomfort and pain. Pepcid helps with it some, as does the propranolol (beta-blocker) that I'm on.

Hope some of that helps! Not sure about the florinef. I was just prescribed it, as well and haven't started it yet.

[stellaluna]

Hello Darling (love saying that!) welcome!

nauseous....yes. I am fairly newly diagnosed. I am only a few months into Florinef and only about 6 months into earnestly adding salt do diet. Salt, possibly the Florinef, and consistently keeping up with the water intake seems to make a marked decrease in my nausea.

I cannot tolerate Gatorade, etc. I drink Smart water often though expensive and occasionally (once/twice per week) use an EmergenC (the regular kind--not the specific electrolyte one) as an electrolyte aid---it has LOTS of vitamins, minerals, etc.

I am not measuring how much salt, just using often a salt shaker of pink himalayan salts on my meals.

Yes, temperature is an issue often.

[Hello Darling]

Thank you so much for your responses!

I've been drinking Powerade Zero to avoid the sugar in the regular ones.

My doctor told me not to drink water at all unless I feel like I really need it because he said it will just flush out all of the sodium that I'm working so hard on trying to get into my system.

The temperature thing is so tough for me. It makes me soooo sick if the temperature goes up at all and if it's a little cool I'm shivering cold. I'm learning how to layer and to also bring something frozen (It was a venti Starbucks cup filled with water and then frozen). Now that I'm not drinking water I am not sure what I'll do. Maybe still bring it as just having something frozen in my hands or on my face helps so much with the nausea and the passy-outy feelings. Maybe someone makes icepacks somewhere that stay frozen for a super long time that I could take with me. I'll have to look into that.

Have any of you found that what you eat affects you negatively? If so, what foods and is it an instant feeling or do you feel bad the next day?

Stellaluna- I use that as my user name so when I get emails etc. it always says Hello Darling, and it makes me smile every time.

I am so thankful for all of you. I don't know anyone with this so I feel like I have no one who truly understands or who can give me advice on what to try or avoid. It's so nice to be able to hear all of this from you guys. Thank you!!!!

[shathaway0811]

I had the same sense of relief when my physician recommended this site/forum to me. I have an increase in symptoms whenever I eat a lot at one time. Generally it's light-headedness, a big increase in heartrate, and nausea. It doesn't really matter what I eat, although really heavy greasy stuff is the worst.

[stellaluna]

I'm sorry I don't have suggestions on the food thing. I'm not sure I have noticed particular triggers other than too much of anything at one time. Though, my diet is a bit non-traditional. I have a few food allergies and am semi-vegetarian.

I was surprised to read your doctor said don't drink water unless you really need it...

From my doctor and from my reading & understanding ( my non-medical education that is) is that Florinef's action is dependent upon your body's intake of water and salt. Florinef is helping your body retain salt which is helping you retain fluid, increase blood pressure, etc....affecting other symptoms/effects. One doctor suggested 3 liters was too little for me (this was before I was on Florinef).

I have found I cannot trust my thirst to get enough fluid in me or I will be behind on my water intake. I am still working outside the home and if I get busy and don't make a point to drink water throughout my day, I become more symptomatic. I tend to drink about 2 liters or so water plain and probably a third liter in 2 cups of coffee, juice, etc.

I know we have to listen to what our doctors are instructing, I am just continually surprised (I shouldn't be...) at how many different medical approaches and philosophies there may be for specific situations.

I know what you mean about finding kindred spirits here. When I came here the first time as the diagnosis was happening, it and the people here seemed to help everything make sense. It is so comforting to be able to vent or ask questions to a group of people that understands one's struggle.

I hope you can find some tools here to make your day-to-day a bit easier.

[Hello Darling]

Maybe the water in the Powerade is hydrating enough? I'm not sure. Now I'm wondering if that's not what I should be doing. Do most people drink water? Hmm... He did say that when I drink water, I will just flush out all of the sodium/electrolytes I'm working so hard to get into my body. I've started drinking it all day every day and I do feel a teensy bit better. If I drink water I end up peeing constantly. If I drink a ton of Powerade I don't pee much at all. I'm not sure if that's a good or bad thing. Prior to this I only drank coffee in the morning and then soooo much water. I love love love water. I figured that it wouldn't hurt to give his suggestion a try and see if it works.

I'm realizing that I'm going to have to be a bit of a guinea pig and just keep trying things until some thing works or until I see what is making it worse.

I just left my Cardiologist's office this morning and he said to get compression stockings to see if it helps. I don't even know what these are. Do you all wear them?

He also told me to eat salt constantly. He said if I can "afford the calories" to just carry around chips or something like that and eat it constantly. I would not love to add a bunch of weight on my already overweight self. I think I'm going to have to get creative with the salt addition.

I'm glad you said that about not relying on thirst to intake enough fluid. I will pay attention to that and make sure I am getting the amount needed.

You guys are awesome. Thanks for making an overwhelming situation a bit easier. <3

[SarahA33]

Hello, Hello Darling Welcome to the forum!

I have POTS and IST, also. I've been diagnosed with POTS w/ hyper component for a while but was just recently (w/in past year 1 1/2 diagnosed w/ IST). I've gotten so much better since I've been correctly diagnosed. I'm glad you have a diagnosis because hopefully now you will be able to make progress, too. Especially when you get the appointment with the pots specialist. In the meantime, it does sound like the EP has given some good info to start w/!

I'm now incorporating about 5-7g of sodium daily, depends on how I feel and what I have going on that day. Some pots patients use sodium tablets, but I couldn't tolerate them because it made my nausea worse. These are the highest content from my journal:

8 oz V8 juice = 420mg (I usually split it in 1/2)

1 cup chicken broth = 860 mg

Sabra Hummus Singles = 260mg (I eat w/ Pretzel's that have 611mg 1cup )

10 black olives = 320 mg

1 cup tortilla chips = 539 mg (w/ 1/2 cup spinach and artichoke dip =377mg)

cottage cheese w/ fruit = 1/2 cup 368mg

1 Bagel = 390mg (Cream Cheese = 1 tablesppn 150mg)

some cereals have a really high sodium content: grape nuts has 580g

sandwiches: lunch meat,a few slices of turkey 360mg, 1 slice of American Cheese = 368mg, and 2 slices of white bread are 280mg combined

1 cup Spaghetti Sauce = 1,000mg

Veggie Burgers = 500mg

Frozen veggies = 1 small package 500mg

Uncle Ben's Microwavable Brown Rice Pouch = 710mg

I think a lot of POTS specialists recommend 2-3 liters of fluids, but everyone is so different so check w/ your doctor. In my case, I was told to split 50% water and 50% electrolyte drinks, etc. I know a lot of members actually make their own, which I'm actually considering because gatoraid seems to be causing heartburn lately. . Poweraid does not, however, so I don't know if it's the dye/coloring they use. I'm really into coconut water recently which comes in plain, orange and pineapple. If anyone has any other suggestions please share because I'll need to supplement the gatoraid w/ something!

I've found the knee-high compression really helpful with dizziness, blurred vision, and brainfog symptoms.

Regarding exercises, the recumbent bike has been most helpful for me. Since I was put on the medication, Ivabradine, I was able to build up to 30-40 min 3-4x per wk and even add in some cardio. I unfortunately have a bad knee at the moment, but I do walk on the treadmill for about 10 minutes (which typically isn't recommended for pots patients because it's an upright exercise). I also lay flat and use ankle weights to do front/side leg lifts, as well as bicep curls, and reverse crunches.

I too deal with temperature regulation issues. It's all part of the autonomic dysfunction.. Best of luck to you and I'm glad you have joined us here! Sarah

[kpflma]

This is a great list of salty foods! Thank you!

[kpflma]

Hi Hello Darling,

There are so many good suggestions here that I don't know if mine will be helpful. I have a dog so I walk her daily. I think that helps my muscle tone and my soul. With PAF, maybe there is not as much of a concern about being upright. I get low BP but not tachycardia. For salt, I drink chicken or vegetable broth. I stick with organic and use the bouillon cubes. I even add salt to the broth. I will have about 3 cups of that a day with the extra salt and I get my daily 4g that way. I drink it warm. I think water exercise is a great way to go. I swim and do water aerobics. It feels weird to get into a pool when I am feeling dizzy. But the dizziness goes away once I have been in there for a few minutes. Sometimes, I just kick with the kick board. I feel like a bit of a dork, but what are you going to do...

I, too, find this forum to be a wonderful gift. I just found it a few days ago. I was diagnosed with PAF about 11 years ago. I was dizzy and out of it for a while. The big clincher was my heart rate getting dangerously low. I was rushed to the hospital and had a pacemaker implanted. Since then, my symptoms worsened and now wax and wane. Just recently, I had my biggest relapse and have spent most of the last 10 days in bed. Makes me feel so lazy! I am no stranger to guilt. 

Thanks for all of your posts. They are very helpful for me to read.

Kathy

[Hello Darling]

I have three dogs and have thought about taking walks with them. My heart rate is just always so crazy that I'm hesitant to try to go for a walk. When my heart rate goes up, I get really nauseous and I hate being out and about and feeling like that. I think that maybe I should just do it anyway and deal with the not feeling well. I have 4 kids so I try to keep myself feeling as good as possible so I can be happy and upbeat when they are home from school. 

What is PAF? I'm still learning what all of these abbreviations mean.

[SarahA33]

you might find this list helpful

http://forums.dinet.org/index.php?/topic/1954-frequently-asked-questions-help-yourself-to-answers/

[Hello Darling]

Yes!  That's very helpful!  Thank you!

[kpflma]

That is a very helpful link! PAF is pure autonomic failure. Seems like most of the people on this site have POTS. Of course, there is much common ground.

[Hello Darling]

Yes, It seems like there are a lot of POTS peeps here.  I have POTS and Inappropriate Sinus Tachycardia (IST) too. I have a harder time finding information on what helps with the IST.