Marg

Gwem - My heart goes out to you. My daughter was diagnosed at the age of 12. She turns 18 on Mother's Day . Please don't get too discouraged. Have you found a doctor who is familiar with autonomic disorders? That's really important. I'm not sure where you live but if you're close by, Dr. Peter Rowe at John's Hopkins in Baltimore has done many clinical studies and written many articals on POTS, NMH and CFS. Good Luck, Margaret

Hi April - A nurse came to the house, put the IV line in, hooked her up, showed us how to change the bags and take the cath. out and was on her merry way. It was great! Candice was able to take a nap, do some of her homework and eat her lunch while she was "hooked up". Sure beat sitting in the emergency room for six hours! Margaret

Good news for those of you who get relief with IV fluids! My daughter's pediatrician was able to write a standing order, through our insurance company, for her to receive IV fluids AT HOME as often as once a week if she feels like she needs them. This is such a relief since we normally have to wait until she is so sick that she has to go to the emergency room. Researcers aren't sure why the IV fluids help POTS patients to feel better even if they are not dehydrated, but since they do, my insurance company didn't argue. (It may have something to do with the cost of going to the hospital. ) Anyway, hope this information is helpful to someone. We didn't even know we had the option until the doctor told us. Wish we had known long before now. Margaret

My daughter caught a "virus" on Easter day, 1997. That's all we thought it was until she didn't start getting better. It took the doctors 11 months to diagnose POTS. Now she's battling CFS and a host of other dysautonomias. Sure, these disorders suck, blow and a host of other words we won't go into. But when I look at this 17 year old child who has toughed it out for the past 7 years (and hopefully will for another 70), who has missed dances and dates and running to the mall and movies and all the other great stuff most teenagers take for granted, no, I can't say it has sucked the life out of her! She is more alive than most people because most people take these things for granted. She takes nothing for granted and is thankful everyday for the things she can accomplish even if it's only playing a video game with her younger brother. She has been on and off of homeschooling for the past seven years, yet carries a 4.0 GPA. She's going to her Senior Prom in 2 weeks. She'll start online college classes in the fall. Most weeks, she's able to work 3-4 evenings for 3 hours in an office. Don't let the people in this forum fool you. Yeah, they get down and sometimes need help more often than others. But have the life "sucked out of them"? No way! You've come to the right place! These are the people who can help educate you. Who will pick you up when you feel like you can't take another step. They will listen to what a rotten day you've had when their whole week has been rotten. They'll send you hugs when they don't even have the energy to fix themselves something to eat. You're definitely in for a big surprise if you're looking for people who have had the life "sucked out of them"! I wish you well! Margaret

My daughter started taking Propanalol on 2/26 and by 3/22 her cardiologist decided it wasn't worth her taking. While it was helping (+/-) with her heart rate and blood pressure, it was making her feel worse physically. Also, she was switched from Prozac to Lexapro and became severly depressed. SSRIs can be very dangerous if you don't get the one that is right for you. Anytime you feel more depressed than you did prior to an anti-depressant, it's time to be re-evaluated. She's back on Prozac now and the depression is gone. Margaret

Lisa - My daughter will be 18 in May and has been dealing with POTS/CFS for 7 years. You sound alot like her as far as figuring things out that work for you. What a great idea to ride the stationary bike instead of walk on the treadmill! I'll bet you've come up with all kinds of ways to be able to still do the things you like to do. Keep thinking, you'll accomplish much. Good luck! Kat - If you still want to go to college, check into on-line classes. Margaret

Hi Mindy - My daughter's cardiologist, in her profound wisdom, has told us on more than one occasion: POTS is not life threatening, but it is life altering. As you're well aware, that's an understatement! Think of inventive ways not to stand up to do things so you're not as dizzy and nauseous. You'd be surprised how many things you can do sitting. Iron, wash dishes, bathe. The list is endless. I hope you can find some really good doctors to help relieve your symtoms and make you feel better. POTS can't be cured (YET), but hopefully your doctors can help with management. Good Luck! Margaret

To ALL - SSA actually tells you on their website what their specifications are for SSDI. Failing a Tilt Table test (orthostatic intolerance) is one of them. I beleive another is Chronic Fatigue Syndrom (which most POTS patients have). I'm getting ready to go through the SSDI process with my daughter who turns 18 in May. Her cardiologist and pediatrician suggested it and said they would help in any way they can. Get your doctors involved, they should be able to help with the documentation. Good Luck to all of you. If I find anything else that I think will help, I'll pass it along to you. Hope you all will do the same. Margaret

THANKS LOUBY! Just added it to my grocery list. Margaret

Goldicedance - Many POTS patients are prescribed Florinef (Fludrocortisone) which is actually a type of Cortisone. It is used to help the kidneys hold sodium to prevent dehydration. If your doctor prescribes it and it has helped you in the past, GO FOR IT! Good Luck, Margaret

Jackie - Glad you're feeling better! Forgive and forget is what I say. Forgive him and forget you ever new him! Send him a copy of the Hippocratic Oath and hi-lite the areas you think he needs to improve on. Then write him a little note and tell him how much better you feel now that you don't have to deal with him anymore. When you look for a new doctor, it may be helpful to send a copy of the information from "PotsPlace". Let the doctor know that yes, you do have anxiety but who wouldn't when you're faced with all the symtoms you have to deal with when you have POTS. Ask the new doctor if she/he has ever heard of POTS or if they have ever treated any other patients with POTS. Also, be very careful of how you feel on any medication you are given. Even if you are not having anxiety attacks, the medication may not be the right one for you. Let the doctor know if you think the medication is altering your personality in any way, especially if you are feeling depressed. Anti-depressants, specifically SSRI's can cause you to be even more depressed if it's not the right one for you. Don't let anyone tell you it's just the POTS making you more depressed. Good Luck! Margaret

Sue - Hope you are feeling better today, even if it's just a little bit. My daughter has learned a few "tricks" over the years. She doesn't take standing showers, she sits in the tub (has for the past seven years). She never stands in front of a mirror to dry her hair, she always sits on her bed. Instead of standing in front of the vanity to put her make-up on, she sits on the floor. Instead of standing at the sink to brush her teeth, she sits on the toilet (lid closed of course, unless she wants to multi-task). Hope at least one of her "tricks" will help you. I pray for you. Margaret

denabob I will pray for you tonight! As for feeling like a failure, please don't. You must be a VERY good Mom to care what your children feel when they are with you and when they can't be with you. There are healthy parents in the world who don't care about their children and here you are not feeling well but worried about them. You obviously love them and they you. I'm sure if they had a choice of not having you at all or having you ill, they would take you just the way you are! You will never be a burden to them because they love you much too much to give up on you even when you get the blues. Margaret

PEDS is another brand of stockings to try. (+/- $36 - thigh high) Also, my daughter just spent three days in the hospital. She was told to drink 2-3 liters per day of real fruit juice and/or water. They also told her not to drink too much more than that because it would cause the kidneys to overcompensate and she would lose the fluid she so dearly needs. Definitely check again with the doctor on those instructions. Hope this helps! Margaret

Hey Michelle, Is that Maryland/DC thing a new state? Margaret

Jackie - It helps to have one doctor to lead a team of doctors or totally handle a POTS patient. Don't be put off! You call the shots. Start by calling doctors' offices and asking if the doctor is familiar with POTS. It may take a while but definitely worth it! GOOD LUCK! Margaret

I too have a teenager with POTS. She doesn't take anything for insomnia. She averages 4-6 hours a night of broken sleep. Her doctors have never offered a solution and she really doesn't want to take more medication. If it's a priority for your son, the two of you should discuss it with his doctor. Good Luck! Margaret

Could be the POTS or have your doctor check your thyroid. Not just the T-3 and T-4 but a complete check. Aren't hormones just grand?! Margaret

Hi - I was reading about the BETA-Blockers in the attached posts and I'm confused and hoping someone can help me. What do you take them for? It sounds like high blood pressure but I thought POTS only caused low blood pressure and high heart rate. Which symtoms do you have? I know BETA-Blockers are usually used for high blood pressure. My daughter's cardiologist is going to hospitalize her (7 - 10 days) for a trial of BETAs. Is this normal? Were any/all of you hospitalized to start this medication? She has low BP. I'm apprehensive but my daughter is so tired of being sick she's willing to try almost anything. Can anyone shed some light? Margaret

futurehope - That is interesting to me! My daughter was diagnosed with scholiosis last year but showed no signs two years previously. Could this be yet another condition that is related to POTS? Anyone else have any back problems? Margaret

My daughter has become sensitive to adhesive also. Anyone else having trouble with gold? She can only wear sterling silver. Margaret

Hi - My daughter had both last year for stomach problems with POTS. The medicine to clear her system made her so nauseous that she started vomiting and became dehydrated. We had to go early for the procedure so they could give her IV fluids. Maybe if you could do inpatient, they could hook you up to an IV ahead of time so you don't become dehydrated. (If that's an issue with you.) Margaret