Brookie16 Posted February 15, 2018 Report Share Posted February 15, 2018 I am hoping another mom or someone can help me here. My daughter 16, has been to many Drs. The symptoms she has are thought to be POTS and I have managed to get an appointment with Dr Ahearn in San Diego. The problem is that her appointment is for over 6 weeks. She has so many terrible symptoms. Her primary wants to chalk it up to anxiety. What did you do about symptoms when your appointment is so far away? Does anyone have a primary Dr. in Temecula area that understands POTS? Did you feel slighted when the primary can offer no help? Thank you , A frustrated Mom. Quote Link to comment Share on other sites More sharing options...
Missy M Posted February 15, 2018 Report Share Posted February 15, 2018 (edited) One thing I would suggest which might be helpful is this: Use this forum (as well as other online support groups, such as the closed dysautonomia Facebook groups) to ask people who have it for practical tips on managing specific symptoms your daughter is having. Those groups can be very useful resources for learning pragmatic ways to manage symptoms. For example, if you were to ask people for tips on what they do to lessen the problem of warm weather causing blood pressure drops, a few people would probably talk about cooling vests being helpful. Or if you were to ask people what things they always keep with them when they leave the house, you’d probably get tips such as keeping salty snacks in purses along with bottled water. I’ve had dysautonomia for 17 years, and some of my very best management tips came from such online forums. The doctors know about the drugs, but the actual people who live with this disorder know what the tools are for managing it day to day. Hope that helps. Edited February 15, 2018 by Missy M typo Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 16, 2018 Report Share Posted February 16, 2018 I'm sorry you have not gotten support from her primary care physician. This list may be helpful as it includes not only medications but other things POTS patients can find helpful: https://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/ (I would consult with her doctor prior to trying any supplement.) Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted February 16, 2018 Report Share Posted February 16, 2018 Be careful treating symptoms before your appointment. Some of these tips may help somewhat, making your daughter look like she is better than she really is. It could delay or even prevent her from getting a diagnosis. I know as a mom it is hard to watch her suffer. Just be proactive and continue to advocate for her. You are on the right track. Quote Link to comment Share on other sites More sharing options...
KariDK Posted February 17, 2018 Report Share Posted February 17, 2018 It's amazing that you got an appointment with Dr. Ahern. I was told recently that he isn't taking any new patients. I was directed to Dr. Ahmed at Scripps. I saw him two days ago. Then yesterday I learned that Scripps only has one tilt table, and that it is scheduled only 6 days/month. Ugh! I'm now told to wait 3 months for a tilt table test. I'm looking at posts, trying to find if there is a quicker way to have this test performed. I've been dealing with my symptoms for 7 years. I want a diagnosis! KiminOrlando's advice is well taken. If you feel you need a caring doctor . . . My primary is an integrative medical doctor in La Jolla, CA. He recently began suspecting that I have POTS. He may be able to help your daughter cope while you wait for Dr. Ahern. I don't think he would write off your daughter as just having anxiety. Dr. Charles Moss, Moss Center for Integrative Medicine, in La Jolla, CA. Quote Link to comment Share on other sites More sharing options...
Bluebonnet08 Posted February 17, 2018 Report Share Posted February 17, 2018 I'm sorry your daughter is having to deal with this, especially at such a young age. It can be very frustrating trying to treat and manage symptoms. A few suggestions I could offer... 1. If she is taking a birth control pill, I would consider stopping the pill. There is a lot of research on it and I believe it is what initially caused my POTS and also made me so much worse. I can send you a lot of research articles if you would like to review them. 2. I get lactated ringer IVs to help manage my symptoms. I am not sure if your primary care would be willing to write a prescription. If not, there are hydration clinics in bigger cities where you can just walk in and get one. It has helped me a lot. You could start slowly (half a bag) and see how she is feeling afterwards. It has been the only thing to help manage my tachycardia. 3. I am not sure if she's had a full iron panel, but I would get that along with a ferritin test. If anything is low she could take some extra iron. Increasing my iron helped immensely with my dizziness. 4. Vitamin D test is another good one to look into, as it is often low with POTS and can be easily treated. 5. If you can get your daughter a FitBit or something that helps to monitor her heart rate so she can see when she is over-doing it and rest, that might be helpful. You could also get an at-home blood pressure cuff from a drug store and check her BP when symptomatic. If if the BP is low, have her lie down immediately with feet elevated and chug a glass of water or two... should help to get it back up. This has also been helpful with my tachycardia. 6. Avoid heat and overheating.. things like hot showers or baths. A shower chair can be very helpful for managing a shower. Finally, it's a very difficult condition that I feel is not well understood by the medical community, even specialists. You have to be your own advocate and my advice is to research everything they tell you and make the best decision for yourself. Please be very cautious of antidepressants as they can cause serious problems and haven't been shown in any research to treat this condition, from what I understand (but are sometimes prescribed by doctors who don't know better...) I hope your daughter feels better soon. Quote Link to comment Share on other sites More sharing options...
yogini Posted February 18, 2018 Report Share Posted February 18, 2018 6 weeks seems like a very long time, but in the journey of POTS (which unfortunately is a long one) it isn't that bad. POTS is a real condition. It's not anxiety. There are a lot of uncomfortable weird and scary symptoms, but usually not dangerous, unless your doctor tells you otherwise. I would just try to hang in there til the appointment. Without approval from a doctor I wouldn't change any medications (and birth control pills in particular actually help many people). If she has low blood pressure, drink lots of water and eat salty foods, rest, don't over-exert, avoid things that trigger like stairs. That's the best you can do. The 6 weeks will be over in no time. Quote Link to comment Share on other sites More sharing options...
Brookie16 Posted February 25, 2018 Author Report Share Posted February 25, 2018 Thanks to all that replied. So grateful. Quote Link to comment Share on other sites More sharing options...
Brookie16 Posted February 25, 2018 Author Report Share Posted February 25, 2018 Re the tilt table, I had to go to the state ins board of Ca and fight for the test. My ins company initially denied it. Quote Link to comment Share on other sites More sharing options...
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