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db2504

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Everything posted by db2504

  1. Does anyone get very agitated during symptoms of shaking/trembling? In general my daughter has a very easygoing temperament, but when she feels shaky/trembling she gets very irritated quickly. She gas even told me she can feel herself getti g this way but cannot do anything to control it. Is this from adrenaline rushes? Any information in regards to these questions would be appreciated. Thank you.
  2. Hi john. Welcome. Do not get discouraged because there are doctors out there who can help you. It took me and my daughter (she has it-I do the research) some time to get her diagnosis. i will keep u in my prayers and I hope u get an answer soon.
  3. Hi Sarah. This is a new neurologist that was highly referred from a member of the forum. We really liked him but we're disappointed that we didn't get a diagnosis. He does want to see my daughter again so I hope he can shed some light on her diagnosis. I'm just worried it could be something even more serious then POTS. Thanks for your kind words.
  4. Yes ur right the diagnosis isn't always necessary but it still makes u feel better when u know what is exactly going on. I feel like since she's been 7,doctor after doctor have been guessing or not really sure of what she had. Thks for ur response and kind words.
  5. Thank u for the info. I will go to rite aid. Thst works for us.
  6. My daughter just started it and I hope we don't have any problems bc it is helping her symptoms. Thanks for the heads up. I will check our pharmacy in pa.
  7. Has anyone invested in their own blood pressure machine for use at home. I'm not a nurse do I can't use a cuff unless its automatic. Any info on this subject would be appreciated? Thk u.
  8. So we saw a new neurologist today and he was very thorough with his examination but when he checked my daughters vitals her heart rate only went up 24 points. He took into consideration she had taken her midodrine, but would not give a diagnosis of POTS. He needs to see her again unmedicated. He is not sure about the POTS diagnosis bc it usually comes from a virus, accident,or other trauma. He does not feel we r sure when it exactly started. So as of now he is calling it orthostatic intolerance but isn't POTS part of OI.
  9. Good luck! I hope you get your answers. I agree with the ride home bc my daughter passed out and was in no shape to drive or even work afterwards. Take the day off u deserve it. Rest is the most important advice I can give. U will be in my prayers.
  10. Hi. My daughter gets the same symptoms where she feels like she could jump out of her skin (that's what she tells me) but it doesn't necessarily coincide with her period. I guess there is a blood test thst can be done to check her epinephrine levels. Thk u I will put thst on the list of symptoms for the doctor. Hope u all feel better u r in my prayers!!!
  11. I'm not sure where u r from but there is a dr Jeffrey Boris at childrens hospital of philadelphia. U can check him out if u google pots dr from chop. Hope this helps. Hang in there. I too am a caregiver and it is very difficult to watch our children suffer regardless of their age (mine is 23). Your in my prayers.
  12. db2504

    Hi

    Hi mal. Welcome to the forum. My daughter is a POTS sufferer and she is 23. She is trying to keep her teaching job but it is very hard bc she too is symptomatic. Just wanted to let u know this forum is wonderful and we have been very lucky to find it. I have had many questions answered and have been given some very much needed words of encouragement. I'm sorry you are not feeling well but this site should help you realize you are not alone with this diagnosis. Everyone is very compassionate and willing to give information if u need it. Try to get well.
  13. Has anyone been prescribed depakote or the generic - Divalproex extended release for their migraines. It's a seizure medicine but also used as a prophylaxis for migraines. It sounds like it has a lot of side effects. What else is being taken for migraines if u don't mind being asked. I'm a little worried about what was prescribed and may not continue to take it. Thanks for any information that is supplied.
  14. Thank u again katybug for your help. I will be giving the doctor a call. I will keep u posted.
  15. Omg. That would be great if you could give me the names of your doctors. Will they do autonomic testing to figure out the cause of her POTS/NCS?
  16. Thank u. That's all we really need at this point a doctor who will support her and help with the additional symptoms of POTS/NCS. The cardiologists only want to prescribe Mododrine for her dizziness and lightheadedness. The neurologist have her meds for her headaches and we ended up in the emergency room bc she had an adverse reaction. The one cardiologist sent out a heart monitor and we didn't even know he had made that decision. The neurologist scheduled an MRI of her brain to rule out a tumor. This has her pretty stressed which is making her symptoms even worse. I just keep thinking positive and trying to pass positivity on to her. I hope we find someone who cares soon and agrees with the POTS diagnosis. Thank u so much for responding and ur compassion. I don't know what I would have done if I didn't find this forum. It has helped in so many ways to ease my worry. Your thoughtfulness is extremely touching during such a difficult time in my daughter's life (as I know u r so well aware of). Thank u. Thank u. Thank u. Also, we live in Pennsylvania.
  17. Wow this is very interesting bc my daughter took antibiotics for the first 5 years of her life. Her ureters (tubes that carry urine from the bladder) were not developed and she stayed on antibiotics to keep the urine from backing into her kidneys and causing infections. This is very promising research and hope it is taken seriously.
  18. I agree with the others and would try the fluids and salt first before the meds. If that doesn't help then u have the prescription in ur possession and get it filled immediately. Be happy the doctor is willing to help with the symptoms and not just ignore the complaints. That's what my daughter is experiencing and her quality of life is suffering. It is very sad to watch. It sounds like you found a good doctor who is looking at the whole person. Thank God for that.
  19. Well we went to a neurogist to get help with some of tbe symptoms of Pots/neurocardiogenic syncope and instead was diagnosed with neurastheniia. In other words, he has no idea what he's talking about. This is so disheartening. My daughter had had 3 doctor' s spots and now three different diagnoses. Has anyo e else been diagnosed with this obsolete diagnosis? We don't know who to see next.
  20. Hi Sarah. I didn't realize dr Kaufman was a pediatric specialist. I was referred by tbe last cardiologist we saw. That just goes to show u how much he knows. Thanks again for your insight and compassion. It is greatly appreciated.
  21. Hi Sarah. Thk u for responding. My daughter is 23 so the pediatric dr is out of the question. We have an excellent pediatric doctor in pennsylvania buy he will not see her. I did some research and read reviews about both doctors I mentioned and was not overly pleased with what patients were saying. I don't want to travel thst far and not have a positive experience. I think she needs to have a complete autonomic testing done to get a definite diagnosis but I don't know where to start. We do have an appt with a neurologist on Tuesday who is very good at diagnosing. I hope he can give us some information and help with some of the really debilitating symptoms; especially the brain fog and all day dizziness. She is a teacher and it is getting very hard for her to keep working
  22. Hi Libby. Thk u so much for responding. I do have the results of her tilt table test Bp was 111/76 and hr was 80. Upon tilting the table to 80 degrees, her hr increased to around 110 bpm and then abruptly dropped around 40 to 42 bpm. The dr could not get a blood pressure bc she fainted within 1 minute. This leads me to believe she has both but the dr on Thursday said bc he was unable to mimic her high hr upon standing so she does not have pots. Yet, he did not even wait 30 seconds after she was told to stand to check her vitals. Shouldn't he have waited till she was symptomatic to check her hr. Also her bp was 116/80 pulse 84 when laying. 110/70 pulse 84 when sitting ( but again did not wait) then 106/68 pulse 88 when standing with no wait time or any re- check at different intervals. He also was arguing with us that the tilt table test exacerbated her symptoms. She is feeling horrible since the test and is experiencing many more symptoms prior to having the test. Have u ever heard of this?
  23. Hi Christina. You made a great decision and a step in the right direction by joining the forum. Everyone is super nice and compassionate. I hope you feel better soon. Keep us posted on ur progress.
  24. My daughters diagnosis was chgd from pots to ncs today. We r so confused. This was the second cardiologist we saw and the second diagnosis. We don't know who to believe. Has anyone been to NYU to see dr horacio Kauffman. We were told to see him or Dr grubb in Cleveland bc her symptoms are not in line with NCS. Help!!!
  25. I'm a mother to a pots sufferer,but it's not weird at all. I love it and have done many of my family's numbers as well. It ways describes them to a tee my daughter is a 8. I will have to read my book and see what the number means.
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