October 22, 2012 at 4:58 pm #337worriedmomParticipant
My daughter, who has always had an abundance of energy, had a couple of episodes of passing out a couple of years ago. We took the regular steps and went to have bloodwork, EKG’s, heart ultrasounds, etc. Nothing was ever diagnosed. She went on with her life as best she could and would learn to deal with the symptoms. About a month ago the passing out was so severe she was taken to the ER and fortunately a DR. sent her to a neurologist. He mentioned POTS, this was the first time we had ever heard of this syndrome. The neuro scheduled a Tilt-Table test. Today was her appointment at the Cardiologist for the test and he wouldn’t do it!!!! My daughter is now 19 and recently married so her husband was with her. I cannot believe this turn of events. We have waited weeks for this test and once she goes into his office he talks to her for a short while takes some notes and then diagnoses her with Vasal-Vagal Synope?? He only talked and took her blood pressure. Oh yea, he said to stay away from caffeine. WHO DES HE THINK HE IS?? I am beside myself and feel like we are just being pushed aside, meanwhile my daughter cannot function in daily, normal activities. Please some advice would be greatly appreciated.
Worried MOMOctober 22, 2012 at 11:44 pm #3068abbilouParticipant
I am so sorry the Doctor blew her off today. Most everyone here and in the POTS and EDS community has been blown off time and time again. It took us over a year to get a proper diagnosis for our Daugther once she reached the bedridden aspect of untreated POTS. A leading Ped Cardiologist totally blew us off. It is very difficult to go through the illness and then have the added disappointment and worry that no one will help. I am very sorry your family is experiencing it also.
What other symptoms does she have besides fainting? What city are you in? (someone may have a doctor suggestion). Do you know what her pulse rate and BP are while at rest, then after sitting and then again after standing up?October 23, 2012 at 10:34 am #3069worriedmomParticipant
We live in Robbinsville, North Carolina; A small town in the western part of the state. She has a host of other symptoms like unable to digest her food, migraine headaches, very sensistive to temperature changes, chronic fatigue, and muscle aches to name a few. We actually performed the “poor man’s tilt-table” test that was described by Dr. Diana. Her heartrate upon standing immediately went from 80 to 130. After this we thought it would be wise to get one done by a DR. but yet another hurdle. Thanks for your reply! 🙂October 23, 2012 at 11:51 am #3070abbilouParticipant
There are 3 NC Doctors listed on the dinet.org website. Maybe one of them could help.
Some things that may help in the mean time. We follow a pretty strict routine to give her the best chnace of functioning each day, but of course its along with meds but they may help some while you guys try to see a new Doctor.
She drinks 33 ounces of Gatorade before getting out of bed. I put her constriction stockings on her (she can’t do it herself and wears only knee high because later she wouldn’t be able to pull them up alone if she goes to the rest room) lower level stockings dont need a prescription. She stays in bed until she is fully awake and hydrated. She never bathes in the AM because the standing and/or hot water is a trigger and AM is the most difficult time for Pots. She also does not wash her hair standing since her arms would be above her head. She eats a high sodium high protien breakfast. She continues to drink large amounts of fluid (water, broths, coconut water) through out the day. Our Doctor suggested 3-4 liters a day. And I know it’s very hard to do but doing some light exercise through out the day can help. It may be she can only do some laying and sitting but it helps get the blood pumping vs pooling in the legs. When resting reclining vs laying can help. Some sleep with their upper body elevated. She may find shifting her day a bit so she is more active (granted untreated and sometimes treated pots people can’t be active at all) In the afternoon vs mornings can help. It is best to try to not sleep all day. I know when my Daughter was untreated she slept off and on all day and night. She struggled terribly with fatique, exhaustion and insomnia. Maybe others here can offer more suggestions. Dinet.org and dynakids.org has lots of info also.
It’s so difficult to watch our children suffer so greatly. I personally had POTS before, so I got it fast what was happening to her. When I had it in the 90’s I fainted every time I stood and no Doctor helped. I got crazy lucky that post pregnancy with her it just went away. I get minor symptoms now occasionally. So upon her symptoms I was very worried that like me before she would just suffer and no one could or would help. I never knew the name of what had made me so sick. Like you guys a random Doc (Psych) commented maybe this is POTS (not something he was able to treat etc). That was the moment that led to getting her better. It took close to a year from then and some useless Doctors before we found a brilliant Pots Doctor. Having a name for what is likely wrong is a huge step in the right direction.
Hope one of the Doctors on the dinet.org site can help you guys or at least suggest a doctor closer if those are too far. Good luck!
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