yogini

Have your friends or family carry the chair for you. enjoy the fair. Let us know how it went!

I am going to stray from the group and offer a different perspective. There is absolutely nothing wrong with using a wheelchair. I would say think about getting a wheelchair for the long run, but maybe not on your special day. It may take you time to adjust to it mentally and maybe now is not the best time. Also, when you are ready for one I think you will feel it in your heart and there will be no question Also, one thing in your post struck me - you went to a small amusement park with your family, you felt bad, but you were able to go and you made it. You didn't wind up in the hospital, faint, etc. Speaking from experience, when you keep doing these activities over time it actually gets easier. When you get stressed, just remind yourself that you did it before and made it. You can also prepare for the day by loading up on fluids before and during, bringing extra medication, taking breaks and lying down etc. just my two cents.

There are many people on here whose POTS is in control with meds and can work again, like me. There is hope. I don't consider myself totally cured, through, unless I am off meds.

CFS is more than just being tired all the time. You need other chronic symptoms, such as low grade fever. I think docs do take it seriously and it Is much more well known than POTS. I don't know much about CFS trmt, but it is alsO hard to treat.

I have been off daily atenolol for about 3 years now. I switched to Paxil, which is better for me because there are no side effects. I too would love to be off medication - I have tried to go off Paxil, lowered my dose for about a year, but went back up. You can talk your dr, In my own experience I have tried to go off meds from time to time over the years. It is always hard, sometimes it has worked, other times it hasn't. Paxil enables me (as long as I rest and keep up fluids) to work full time + and live life almost to the fullest, and I have no side effects from the Paxil. I still take betas on a bad day, though I have switched from atenolol to bystolic (which has fewer side effects). In my opinion there is nothing wrong with taking meds if they help. It does not mean in any way that you are not drinking.or exercising enough. I have exercised 5-6 times/week, greatly improved my strength and fitness from when I first got sick. I went from being a weakling to being able to stand on my head and it hasn't taken away my need for meds. Although studies may show that exercise helps POTS in some people, it does not cure POTS in everyone. We should not feel guilty for not trying hard enough just because we take needed meds. Yes, ideally we wouldn't need them, but ideally, we would not have POTS in the first place! (BTW there are many people that do improve and don't need meds anymore, eventually).

One of my favorite books is Snow Flower and the Secret Fan. I also like The Help, Secret Life of Bees, Friday Night Knitting Club. Reading has always been an escape for me. I read a lot of books that are really sad or intense (Little Bee, Cutting for Stone, History of Love), beautiful, but maybe not the most uplifting reads. My eyes hurt - not sure if this is from POTS or my job, so I only do audiobooks these days, downloaded free from the library!

Some people have both and there is an overlap in symptoms between POTS and CFS. I don't know as much about CFS bc I don't have it. But it involves not just being chronically tired (which everyone with POTS is), but things like low grade fever, swollen glands, etc. Some POTS patients have these type of symptoms, but I am inclined to think that most do not. And I am not sure how much CFS patients' problems are positional in nature. Frankly I am glad I have POTS and not CFS - it seems like CFS would be worse than the form of POTS I have.

Great advice from this amazing mom. If you know something is wrong in your gut, don't listen to what everyone is saying, just keep pressing forawrd til you get answers.

Bananas, she probably feels bad about herself and is projecting it on you. Whatever the reason, it doesn't sound like a good person to be around and you'll be better off without her. Friends are people that make you feel good about yourself. I had a close friend that I spent almost all of my time with that was poisonous to me I reached my breaking point and moved on. It was hard at first, I still miss her sometimes. Close friendships are hard to find/replace, especially when you are sick. It takes time, but it's also a relief to have a poisonous person out of your life. And Kit, thanks again for the thread and sorry for hijacking it!

I have been there, and am still partially there dealing with the remnants of these issues. Believe me, there are lots of people in your shoes who are perfectly healthy and just as many people with POTS in unhappy( even unhealthy) relationships or family situations, but that doesnt make it easier, does it? Most of the time i'm too busy trying to survive/push through to think about this, but i do feel sad sometimes. In fact i was just thinking about this and getting incredibly upset over the weekend. It's reassuring to know there are others out there. Thanks so much for sharing.

I so agree with Rachel about the drug interaction checker - I use those al the time and there are bunch of different good ones. In addition to your dr, another great source of drug info is your pharmacist. They would usually know all of oyur prescriptions and can give you personalized info - for free!

Are you looking for a primary care dr to manage your POTS? I was told by a doc friend most docs don't read what we give them, so maybe they are scared off if you are sending them literature before you've even met...and havent even paid a copay. Sad, but true. Can you get a recommendation from someone on the forum? Otherwise, ask friends for a caring PCP or one that is at least open to seeing chronically ill patients.

Talk to your pharmacist - stomach problems are a big side effect of mesinon. My dr also told me bright red blood means hemorrhoid, not ulcer.

I don't think anyone here intends to (or can) diagnose anyone with any condition or imply that POTS causes PTSD or the other way around. We are all sensitive to having any link between POTS and a psychiatric/pscyhological condition. POTS is a physical illness.

I definitely think I was traumatized over the first year or two of POTS. The symptoms are very scary and I was scared of my own shadow in living because I wa worried about triggering symptoms. Who can blame us. It is very scary. I have a much better perspective now that I am used to it, but still have those moments of fear sometimes.

You have to be carefully because a lot of salty foods have MSG. Olives are good. I drink organic broth - no MSG and super salty.

Yes, there might be services available that don't cost anything, esp if you are under 18. I am keeping my fingers tossed for you that there are.

It is really sad and unfair but we really can't rely on these doctors. I am so glad the cysts were found. I do hope you get treatment and your POTS goes away!

Let us know how it goes. My dr mentioned this to me, but he likes to run a lot of tests that I don't think I need. I do have swelling in my right ankle, so I am thinking about it.

They have cooling bandanas you can buy. I just wet my hair and clothes. It looks funny, but does the trick.

Not sure where you are, but in the US as long as you have your seatbelt on you are fine. I only do it when there is an empty seat next o me. They are pretty good about letting you move to an empty row once everyone has boarded. Everyone does this - you dont need to mention POTS

Yes, I would see a dr if you can. There have been a lot of medical improvements in POTS the past couple of yrs. you can also see a headache specialist. it is a positive sign that you have improved some. If you got this young there is a chance you will improve totally.

If you can get an extra seat or two lie down at takeoff. Airlines let you do this as long as your seatbelt is on.having your body's/head as flat as possible may help

It would depend on your states particular rules. When you go to renew your license you probably have to chek the box re medical conditions. Your dr probably has some influence too. I would call the local DMV to find out what the policy is. I don't faint, but I didn't drive for years after getting POTS - mostly because I lost confidence, I think!

What is your BP during all of this. A seated HR in the 90s is very high. Mine used to do this when I first got POTS, but no more. An increase of 80s/90s to just 100 is not that much of a difference. Have you looked into inappropriate sinus tachycardia, that is tachycardia without the positional change required for POTS. Also,I would measure pulse manually, just to make sure your iPhone app isn't screwy.