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Everything posted by dakota

  1. I am sorry this is happening to you. I agree with you that it is a problem -- a big problem, in my opinion. My daughter experienced this, and it got to the point where she was hallucinating, as well has having all kinds of other visual issues, from lack of sleep. Her primary care doctor wouldn't do anything, the cardiologist referred us back to the primary care doctor. Eventually we ended up at a psychiatrist who was the only person we found who would help her. She started on Trazodone. That worked for a while, but then stopped working. She now is on Seroquel. Sleep is so important for our bodies. I'm sorry your doctor doesn't seem to be taking this too seriously, because I think it is a big problem. I would try your doctor again, and if that doesn't work, you might need to look elsewhere, possibly to a psychiatrist, as they seem to be comfortable with prescribing sleep meds.
  2. My daughter had a lot of issues with this. The opthamologist said it was silent migraines. The neurologist said it was anxiety (I think probably most of you have heard that at one point or another). The neurosurgeon said it could be lack of blood flow to the brain. She now takes seroquel for sleep, and we found that most of it, not all but certainly the majority of it, has gone away, now that she is finally sleeping. I wondered if you might have any sleeping issues - if so, you might consider that as a possible reason for it, too. Heiferly seems right on the money with the specialists to see for this.
  3. I mentioned this to my 16 year old daughter who has POTS. She said that one thing that is important for her is to set realistic goals for herself. Small ones that are attainable for her. My daughter found that when she set her goals too high, she got disappointed, and then was not so motivated to try something else. Then she started with small things which she could accomplish, and then worked up from there. And she means really small things, like making her bed. Once she was able to accomplish the small goals, it helped her move on to a slightly larger goal. while the goal of taking a shower may not seem like much of a goal to the average teenager, for somebody with POTS, it can be pretty difficult. Sometimes that is the activity of the day, and if that gets done, then she feels pretty good about it.
  4. I think it's good that you are paying attention to meds interactions, because I'm not sure if sometimes the doctors do. My daughter was on Trazodone and Tramadol for an extended period of time and had no problem with serotonin syndrome, even though it is something to watch for with these two meds combined. When they tried to add a third one that also interacted in this way, we balked, and she was switched to something else. I think it's good to be aware of and watch for drug interactions, but my daughter had no problems with this.
  5. Glad to hear that you have found a doctor that you like and that will work with you to get you what you need. That is often difficult to find!
  6. Thank you for these sites, Susan! That is very helpful!
  7. My daughter has seen both and I agree, I think it will be worthwhile. One note, though -- You pay up front for Dr. H and they say they will submit the claim to your insurance -- they do, but they neglected to mention that they don't participate with my insurance company, which is a huge company. So I ended up having to pay the entire bill myself, which wasn't cheap. Might want to check into that if it makes a difference to you.
  8. Lieze - I'm wondering if you could get a good, accurate scale to help with the postage. If you have the correct weight, you can look up the postage online very easily. Another option for mailing is to use the different size boxes the post office has that can be any weight for a certain amount, as long as it fits in the box.
  9. Proamatine is midodrine, and a lot of people take that. Unfortunately, it is not going to be on the market much longer unless something changes -- only until September 30. It would be a shame to find out that it worked for you, only to then not be able to get it any more. My daughter took midodrine for about 9 months, but it eventually stopped doing anything for her and she stopped taking it. My daughter is on a beta blocker and it is the one med that has consistently helped her throughout her time with POTS. Unlike you, though, she does have quite a bit of tachycardia -- it's a lot less on the beta blocker but it still occurs. I wish you luck in finding something that works for you!
  10. A new, albeit small, study concluded that Tai Chi helped fibromyalgia patients more than regular stretching exercises. "Aside from reductions in pain, patients in the tai chi group reported improvements in mood, quality of life, sleep, self-efficacy and exercise capacity." I thought that some of these symptoms are the same symptoms as people with POTS, so I wonder if Tai Chi might do something for people with POTS. This is the news article, not the study itself: http://www.reuters.com/article/idUSTRE67H5I520100818 Does anybody have any experience with tai chi?
  11. Cat_Lady, my daughter takes both propranolol and paxil, so you can mix a beta blocker and an SSRI.
  12. Sorry if this has been seen before, but it was new to me. It's entitled "Platelet Delta Granule and Serotonin Concentrations Are Decreased in Patients with Postural Orthostatic Tachycardia Syndrome." http://ash.confex.com/ash/2009/webprogram/Paper24290.html
  13. I am so sorry to hear what you and your son are going through, and he at such a young age. I just wanted to say what lucky parents he has, to have parents who are so observant and attentive to be able to figure out some of his problems without him being able to speak about them. I'm sure you have helped the doctors immensely in all of this. Your son is very lucky to have you and I wish you and your family all the luck in the world in finding good doctors and getting through this.
  14. Hi Brian, I just wanted to welcome you here. It seems to me that you have come to the right place. Your symptoms are very familiar to everyone here. You mentioned that you had problems with showers. My daughter is very heat sensitive, has a lot of pooling in her feet, and of course, the obvious problem with standing. We have found that a shower chair really comes in handy. As for the tilt table test, my daughter had an IV put in before the test (needles don't bother her). At first they did the test without anything, and her heart rate increased from 75 to 152. They they tilted her back down and wanted to inject something, I'm not exactly sure what, as they had me out of the room. She told them no! They still diagnosed her with POTS, so I really don't think it's necessary to stick you with needles to get a diagnosis. Maybe you could ask ahead of time if they could do it without so that you wouldn't have anxiety about the needle to complicate things. (And by the way, I'm the same way about needles -- that's one thing that does get me to faint.) I very much hope that you can find a doctor who will listen to you. You have so many of the symptoms of POTS, I just hope you can find a doctor who is familiar with dysautonomia. Best of luck to you!
  15. My daughter's tilt table test not on meds had her heart rate go from 75 to 155. 6 months later on meds (propranolol 120 ER and midodrine 10/3xday) she had a poor man's tilt table test, with measurements taken regularly up to 20 minutes of standing. Her heart rate increased from 50 to 95. Her heart rate was definitely lower overall, but the increase was still 30+ beats per minute, the standard for POTS. What her EP said is that this showed that she was not maxed out on her meds yet. While she has tried other meds since then, she hasn't yet found anything that that works for her.
  16. I'm just wondering if anybody has found anything that helps with these particular symptoms. My daughter is having problems with this. Carpets and roads appear to move. Spots all over the place. 24/7, as Ramakentesh said. She recently turned 16 and was hoping to learn to drive, but even she agrees that would not really be wise with the road crawling and flashes of light appearing out of nowhere. She is on a beta blocker and midodrine. I had wondered if the midodrine was making the blood vessels in the head constrict too much, but she sees the same things when she first wakes up. At that point, the midodrine would already be out of her system. Any ideas on something that might help this would be most welcome. I am working on getting a neurology appointment to see if they have any ideas.
  17. One of my daughter's bad symptoms is visual changes. Even on a good day, she has spots continually, but on a bad one, it's spots, stripes, sparklies, etc., all of the time, not just from standing, but even sitting. We assume this is from lack of blood flow to the upper body parts. If that is true, then the brain is also not getting enough blood. She wondered if this could cause permanent brain damage. How long can the brain run on a shortage of blood and not be permanently affected? Given the intelligence level of the people on these boards, I would say we don't need to worry about that -- there are obviously some very bright people here. But clearly that is something that my daughter worries about.
  18. I believe it's season 6, episode 20, but I don't think it will be online for another week. I was just happy that POTS got the exposure it did, although it would have been nice if it had been more factually accurate!
  19. This is now one of my daughter's daily symptoms. We have not really found anything to help yet. Her EP has said that she can increase her midodrine to 4 times a day, but no more than every 4 hours. She seems to notice it happening more often when the midodrine is wearinag off, but that seems to be more like after 2 1/2 - 3 hours, not 4. I hope this is a temporary thing for you or that you can find something to help!
  20. The Merck Manual says: "Vagus Nerve Stimulation: Fainting may occur if the vagus nerve, which supplies the neck, chest, and intestine, is stimulated. When stimulated, the vagus nerve slows the heart. Such stimulation also causes nausea and cool, clammy skin. This type of fainting is called vasovagal (vasomotor) syncope. The vagus nerve is stimulated by pain, fear, other distress (such as that due to the sight of blood), vomiting, a large bowel movement, and urination. Fainting during or immediately after urination is called micturition syncope. Rarely, vigorous swallowing causes fainting due to stimulation of the vagus nerve."
  21. I'm very happy to hear that your surgery went smoothly and that you're home! Hopefully, getting those wires out will finally relieve the long term pain you've been in! Hoping your feeling better very soon!
  22. I am so sorry you have been going through all of this, Nancy. Hopefully, you will have no complications from it this time. I know they will be carefully monitoring you in order to prevent any further issues. Once they get the wires out, you should feel better than you have in a while, as you won't have them irritating your body any more. Best of luck to you, Nancy. I will keep you in my thoughts and prayers. Let us know how everything went!
  23. Thank you, Kathy, for posting this initially, and to Erik for commenting on it later. I must have missed it the first time around. It's great that they have the webinar posted so that everyone can view it. This seems to be a great series. Upcoming webinars include treatment for orthostatic intolerance and applying for disability, both of which are topics people here are interested in.
  24. Simmy -- the closest thing I could find to New Jersey is the Lackawanna coal mine tour in Scranton PA (2 hours away from central Jersey). it goes 300 feet under the ground. My initial thought was Luray Caverns in Virginia, but I know that's not exactly too close to you. Given that it's in the mountains, even if it's under the ground, I'm not sure how low it is relative to sea level.
  25. I'm so sorry that you and your daughter are going through this, Brenda. It is very hard to watch your child not being able to live up to their potential. I was talking with my dad yesterday about my daughter who has POTS. He said that she is so bright, she could have been a model, a PhD physicist or anything in between. And here we are, withdrawing her from high school in 3 days when she hits 16. I remember one time last year going to the high school to pick up work, and I left in tears. I was just looking at all the kids walking around and I thought they just don't know how lucky they are just to be able to stand up and walk. What my daughter and I are trying to do now is to focus on the things that she can do, rather than the things that she can't do. Her current life is certainly not the way we had expected her high school years to turn out, but she has a very positive attitude, and I am trying to think that way as well. Her life is just going in a different direction that most kids her age. And she thinks that POTS has made her a stronger person and more aware of all of the different facets of life. I would much rather have taken this burden on myself rather than see it on her, and I'm sure that's true with most moms out there. But all we can do is to support our kids and stand up for them when other people don't understand the situation. Best wishes to you and your daughter, Brenda. Your daughter sure has a great mom who is on her side.
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