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Trach

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Everything posted by Trach

  1. I agree with yogini. Dr. Grubb told us that treating POTS is like treating a moving target and that every patient is unique in his/her response to medication and other treatments.
  2. My daughter had passed out standing up and sitting down. We were referred to a pediatric cardiologist who diagnosed my daughter with vaso vagal syndrome. The doctor said she would not put her through a tilt table test, because my daughter would be miserable. I was around 40 years old then and that is when I learned it was not normal to stand up and see stars and/or get dizzy. Around a year later, my daughter played a soccer game and attended her 10th birthday party. She went to bed happy and feeling great. The next day she woke up screaming in pain. Her neck and joints in her hands hurt so badly she was crying hysterically. She could not get out of bed. She was dizzy and sometimes had to crawl to the bathroom. Our pediatrician ordered Xrays then MRI of her neck. All tests ok. Pediactric neurologist in Dallas thought it could be rheumatoid arthritis so we saw specialists at Texas Children's in Houston. No one knew what to do. After two months of being completely bedridden and numerous tests, pain meds, etc, I finally took my daughter to the ER at Texas Children's hospital on friday night Memorial weekend. The docs at the ER didn't have a clue what to do and were about to discharge us when the Tx Children's neurologist I had been trying contact, Dr. Lebron, agreed to see my daughter. At 7pm on a Friday night, my daughter explained her symptoms regarding her neck, hands, and dizziness. The strange thing was that migraines had not been a problem the last two months. Dr. Lebron's first response was "I don't do hands", but she kept on asking questions and observing. Dr. Lebron left for awhile and when she came back she starting giving us all of the symptoms of POTS. Both of us answered "yes" to almost every question. That is how both my daughter and I learned about dysautonomia. My daughter became Dr. Lebron's second of many dysautonomia patients. When Dr. Lebron was stumped about my daughter's care (before we saw Dr. grubb) she attended an autonomic conference and presented my daughter as a case study. Although we were Dr. Lebron's second patient, she had experience with familial dysautonomia when she trained under Dr. Axelrod in NY. We have been very blessed to have Dr. Lebron in our lives.
  3. I am the youngest child of four girls. My oldest sister (17 yrs older) is the only person who shows no sign of any medical problems. She was type A to the max. Graduated number one in high school, college, and medical school. My next sister (15 yrs older) has a myriad of health issues mostly due to epilepsy, allergies, and undiagnosed ADD. Although this sister graduated from college, her epilepsy is very disabling and she is now on disability. Third sister (5 yrs older and most active) has autoimmune issues, clotting problems, degenerative disc disease, migraines, pituitary tumor, gallbladder, and appendix surgery (removed), allergies, the list could go on. This sister is also type A too and is a RN. The strange issue is that both of her children have brain issues -ADD, ADHD, dyslexia, dysgraphia, and bipolar. I used to be type "A" until my youngest broke me. I believe now it was a precursor to POTS. She rarely slept and seemed to have "colic like" symptoms for years. She had meltdowns that I eventually understood meant she was getting sick. Thankfully those meltdowns rarely happen now. Both my girls have severe migraines and one has POTS. Both are type A - sometimes to their detriment. After talking to different neurologists in the field and a cardiologist about my family history, the doctors believe my POTS is definitely a brain/autoimmune issue. When I was younger, my sister who is 5 years older and I moved 6 times in 7 years because are father was transferred. There is speculation that environmental factors contributed to our autoimmune problems.
  4. For patients who go after you - may it never happen again. In Quebec, you can request an investigation into the professional conduct of your physician by completing and sending a investigation request form to the Direction des enquêtes du Collège des médecins du Québec: Direction des enquêtes Collège des médecins du Québec 2170, boulevard René Levesque Ouest Montréal (Québec) H3H 2T8 Fax: 514-933-2291 Tel: 514-933-4441 Toll free (from outside Montreal): 1-888-MÉDECIN For more detailed information on complaints procedures click here. (site below). http://www.cmq.org/en/public/profil/commun/AProposOrdre/ProcessusDisciplinaire/Enquetes/PorterPlainte.aspx
  5. You are not weird at all. Just do not give up in seeking treatment. There are a lot more ways to treat headache/migraine pain than dysautonomia - you just have to find the right doctor (usually a headache specialist or a board certified pain specialist). One word of advice....good headache doctors only try one medicine at a time. That is the only way you can tell if the medicine works or not. I know that sounds like "common sense 101" but over 50% of the neurologists my family has seen over the years has tried to modify more than one medication at a time. I live in a small town and my older daughter sees a pediatric neurologist in Dallas. A few years ago, my daughter had a horrible migraine and needed to be admitted to our local hospital for IV DHE. Our pediatrician wanted us to consider using the new neurologist in town. We met with the new neurologist and told him our daughter's doctor in Dallas was considering Topamax but her doctor was concerned about weight loss. The next thing we knew, this doctor said he was going to put my daughter on Topamax and was taking her off of Corecard, because he "doesn't like Corecard ". We never saw that doctor again. The next month we saw my daughter's doctor in Dallas. She started Topamax. When it was time to go off another drug, her doctor asked her which one seemed to work better for her. She chose to keep Coregard. Listening to what works and taking one drug at a time distinguishes the great doctors from the fair doctors.
  6. Definitely yes and also the more I bend down (head below my heart) so I try to remember to bend with my knees but I keep forgetting! Cognitive dysfunction is my middle name nowadays!
  7. If after you have a sleep study and you still have problems, I have one daughter who takes trazadone (for migraines and sleep). My younger daughter has horrible insomnia. I read an article someone had written on a Dinet newsletter as a cure for her insomnia. The writer had used Baclofen, which is typically used for MS. After doing some research on the drug, my daughter's neurologist said it was ok to try. For the first time in YEARS....my daughter is finally sleeping through the night. Thanks to the person who wrote that article!
  8. When we talk about the kids who get the syndrome - almost all of them are overachievers. But I wonder if these kids have more supporting parents who push the medical system for an answer. I wonder how many kids (and adults) are out there who do not have a support system/doctor to turn to? PS I am glad you liked the article. Bobisdysautonomia is my favorite blog!
  9. My daughter has taken Klonopin on and off for several years. It helps with her anxiety, tachycardia, and sleep. She has successfully weaned herself off the medicine a few times, but went back on the medicine because Klonopin helps her function better. My husband never paid attention to the medications that our daughters and I take until he had to attend a week long drug seminar. Now he is freaked about Klonopin and anything else that can be addictive. (I have been trying to get him to understand our kids' meds for years!). My daughter's answer to my husband is the same answer I give to you - if Klonopin can help you feel better when you have POTS then it is worth it!
  10. Sorry, I need to learn how to type! Regarding POTS and beta2 adrenergic receptor, Dr. Blitshteyn refers to an article by Jacob G, Garland EM, Costa F et al. Beta2-andrenoceptor genotype and function affect hemodynamic profile heterogeneity in postural tachycardia syndrome. Hypertension 2006; 47:421-427 Regarding POTS and NO she cited two articles: 1). Meadow, Minson, Stewart. Decreased Microvascular Nitric Oxide-Dependent Vasodilation in POTS. Circulation 2005;112:2611-2618 2). Garland, Winker, Williams et al. Endothelial NO Synthase Polymorphisms and POTS. Hypertension 2005;46:1103-1110 Per Dr. Blitshteyn "Nitic oxide, a molecule that regulates many physiologic processes, including vasodilatation, has been studied as a possible culprit in patients with POTS. In addition to causing vasodilation in blood vessels, nitric oxide also modulates the release of norepinephrine from the skeletal muscles and the heart and regulates blood flow to the brain. Circulating nitric oxide is synthesized primarily by an enzyme called endothelial nitric oxide synthase (eNOS). In one study, researchers found that certain variants (genotypes) of eNOS occurred less frequently in patients with POTS compared to the control group. In addition, it has been suggested that elevated levels of eNOS contribute to the development of POTS, but more studies are needed to explore the role of eNOS and nitric oxide in POTS"
  11. Yogini, Here is my favorite reply to the NY Times article: http://www.abc.net.au/rampup/articles/2011/11/21/3372006.htm (written by blogger Michelle - Bob is Dysautonomia).
  12. Dear All above, I have so many questions too. My PCP that I used for years sold his practice. I just cannot find the "right" doctor to replace him. So I have just been using my neurologist for now, but am trying to find a good internist in Houston. Does anyone have recommendations? My youngest daughter's neurologist understands my medical history better than my own doctor. Her doctor believes I have fibromyalgia. There are days when I wake up and I feel like I have the flu without the respiratory problems - my entire body hurts. Then there are days when only my joints hurt. Exercising on the rowing machine has helped somewhat except pain in my leg/left hip has come back with a vengeance. My left hip has always "clicked" out of joint. My left leg (hard to describe pain - it is not muscular but more in the tissue of my leg) feet, joints in hands frequently hurt ( exercise makes the pain much worse). So, I am going to get tested for EDS in May, Like Ginger, my EMG's were negative. I thought my symptoms were POTS related until reading more posts on DINET. I am really confused as to the difference between joint/body pain caused by POTS vs. Fibromyalgia and/or CFS. I was probably born with POTS - I always thought it was perfectly normal to stand up and see stars! I take Effexor and Topomax for migraines. I tried Cymbalta and Lyrica - no luck. I had bad reactions to beta blockers (bp plummeted) midodrine and florinef gave me horrible migraines.
  13. Thanks for the info - I forgot about TXPOTS post.
  14. Firewatcher, I was under the impression Levine required his patients to go off of all meds in his study. Do you know if that is still true? The reason I am asking is that my older daughter's pediatric neurologist called me last year. Her doctor had referred a POTS patient to Levine's program. The patient went from wheelchair bound to fully recovered. My daughter's neurologist wanted me to consider Dr. Levine's program for my younger daughter. I told the doctor I had looked into Dr. Levine's program, but I did not pursue because my daughter would have to go off her meds. Due to her migraines and insomnia, my daughter refused to try any program where she had to go off her meds. A year later my daughter eventually got better and is on the high school swim team and works out approximately 2 hours/day 5 days per week. Is her POTS cured? No. Is she better? Yes. She still struggles with fatigue and is exhausted by the end of the week. I do not know if she will ever be "cured".
  15. I am so happy for you!!! After everything you have gone through, I am so glad that you can now work towards getting better!
  16. In the book," Together we Stand Riding the Waves of Dysautonomia", Dr. Blitshteyn also adds two more possible causes being studied: 1) POTS and beta 2 adrenergic receptor 2) POTS and nitrous oxide If anyone wants the info, I will be happy to type it from the book. I don't understand the concept well enough to summarize . Trish
  17. Although my POTS symptoms were mild at the time, my pregnancies were difficult. First pregnancy - stillbirth at 20 weeks due to blood clots in umbilical cord. Positive test for antiphospholipid syndrome. Second pregnancy - baby girl born 3 weeks early weighing 6 lbs 1 oz. Put on total bed rest at 28 weeks due to preterm labor. Third pregnancy - baby girl born 3 weeks early weighing 7 lbs. Fourth pregnancy - miscarriage at 12 weeks. I never tested positive for antiphospholipid syndrome again so my doctors believe the first test was a false positive. I recently found out a family member has a homozygous genetic mutation for a clotting disorder that is also related to pregnancy loss, migraines, and cardiovascular disease (mthfr gene). It is probably likely the mutation is the reason for my pregnancy issues and maybe my migraines.
  18. Is there anyway you could make contact with any DINET members who live in Hawaii through the "meet others" program? Surely we have members in Hawaii (maybe not active) who may be able to give you advice about the POTS doctor. The big factor I would find out from your husband is his heat/cold tolerance. Will he be working inside, outside, or both? The change in barometric pressure is very difficult and can make flares worse, but I think it would help to know your husband's best temperature range. For example, I do best around 70 degrees give or take 10 degrees. I live in Texas and except for the horrid summer, 7 - 8 months of the year are fairly nice. If your husband can handle the average daily temp of Hawaii and you get a good report on the doctor I would go for it!
  19. My daughter and I both run in the 96 degree range - sometimes a little higher or lower. When my daughter is in a flare, her temp stays low but she flushes and is always burning up, even if the room temp is in the 50's. Although my daughter's doctor was concerned at first, she said her temperature dysregulation was part of her dysautonomia. One thing that was important, we now know that a 98-99 degree temperature is a high fever and is not considered low grade - something that was hard to explain to hospital staff whenever our doctor was out of town.
  20. I have to tell you one of those "small world stories"....when our small group of Texas Children's parents and patients had our first meeting at a pizza place in Houston, our waiter overheard our conversation about POTS. He told us his best friend in high school had POTS approximately ten years ago. She was very sick during high school, but thankfully her father was a doctor and figured out her diagnosis quickly. Our waiter described his friend's pain, frustration, and isolation during those years. Gradually after several years, the waiter's friend improved. She started college part time a few years late. Eventually, she graduated from college, works full time, and is symptom free. I cannot tell you how much we all needed to hear that story. I wish you could have seen the look on our kids' faces - priceless.
  21. Jen, It sounds like 2011 was horrible for you. I am so very sorry. You do not sound like you are complaining at all. Everyone has offered great ideas. I just have one more to offer - I talked to Dan Smith at NDRF to get POTS information last year. He and his wife are featured in the mystery diagnosis feature about dysautonomia. Dan's wife, Linda, has dysautonomia. They also have at least one child with the syndrome. When I mentioned to Dan that my husband was having a difficult time accepting the syndrome, Dan offered to talk to my husband. Dan said he frequently talks to spouses. My husband never talked to Dan, and now I regret not pushing the issue. Dan is knowledgeable, hopeful, and calming. Dan or Linda may be able to offer come good advice to help both you and your husband. The Smith's also know Dr. Goldstein (sp?) at NIH. I understand Dr. Goldstein conducts dysautonomia research at NIH. Many hugs to you! Trish
  22. Are you having any headaches? Mestinon is the next drug on my list, but I am scared to try it. Every POTS drug I have tried (except beta blockers - bp crashed) caused awful migraines.
  23. One more thing..... I would also ask Debbie Dominelli @ DYNA or call Dr. A's office to recommend a new counselor/psychiatrist in your area. You may be able to get an appointment before your doctor's visit. Finding a good counselor and/or psychiatrist who understands dysautonomia is nearly as important as finding a great dysautonomia doctor.
  24. Doctors....Agh!!! I am so very sorry you are going through all of this stress. You are right, Dr. A will help you get better and get everything straightened out with your school. I have a friend who moved to Virginia for 2 1/2 months so that her daughter could be treated by Dr. A on a weekly basis. Her daughter was wheelchair bound and passed out constantly. After 2 1/2 months of being treated by Dr. A, her daughter returned to school on a part time basis walking on her own. There is hope.
  25. I have used steroids periodically over the past several years to bust migraines and for bronchitis. I usually feel great around the second or third day, but i have a terrible problem sleeping. The last time I used steroids to bust a migraine my POTS symptoms were also in a full flare, and the effect of the steroids was minimal. However, my neurologist wants scale back my prednisone use. He is concerned about the side effects - stomach bleeding and suppression of my autoimmune system. I don't think it can hurt to try as long as your physician is monitoring you. I also believe the accepted level of steroid use depends on the doctor's specialty.
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