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Everything posted by ptalaura

  1. sorry to hear you had a bad faint. hope you are doing better now. stay safe.
  2. I too took a while to get adjusted to the midodrine. Can't be upright and function if I don't take it. The amount is adjusted a lot. I take 10 mg 3 times a day. I remember when beginning it felt like itchy scalp but has mostly resolved.
  3. I have hyper pots. I take too much meds. I am on inderal, mestinon, an ssri, midodrine, efflexor, prevacid, citrucel, fish oil, vitamin D, all these plus meds for when I have a migraine. It seems every time I go back to my dr, something is adjusted, med dose, discontinue med, add new med. It is rare that I go and have no med change. Some make me worse so have to be adjusted, or BP running too high, too much fatigue, never ending. I just try to go with the flow, and know it could be a lot worse.
  4. I had many tests in my local home town then went to some specialists at a much larger city hospital. I had some paralysis of a vocal cord with incomplete closure. I had an EMG done on my vocal cords and then had a test done for MG (which I don't recommend, oh my!) The MG test did come back negative. PTL! But I still have the symptoms of loosing my voice with syncope and come to the conclusion that I'm going to live with it. I have had a bad cough for 18 months now. Thought it was allergies, took some meds for that but no change in cough, when I am laying down on my right side and cough it sounds horrible, barking seal. but if i do it on my left just a simple cough. So I know something still isn't right. I am still going to persevere. I have just changed PCP because my other one all he wanted to do was argue bout my meds that my POTS specialist was giving me. I don't have time for that or feel like going through that each time I go. I was more upset leaving and didn't even get to what I went to the dr for in the first place. So I'm starting over, with a new one but this one knew about POTS, amazing! starting off good!
  5. They only did it as a trial, but when I got it in my hand I knew it would work! within 2 days I had my voice back! And I gave God the glory for them giving me this medication!
  6. Before I was dx I had pneumonia, after coming home from the hospital, I was hoarse and coughing. I continued that for almost a year, 3 weeks shy to be exact. I went to many doctors. Many as you know tell you it is all in your head, I finally went to one who did a scope and my vocal cords werent working right, still arent. Every time I am presyncope, get too warm, or have syncope spell I lose my voice for an undetermined amount of time. To get my voice back after that year, they trialed Mestinon and it took two days but Thank God it worked! I am still on it now at a much higher dosage and the symptoms are still there but I have my voice. When after 20 months, I finally got dx with POTS, the doctor had never had a patient who lost their voice like I do. But when I started going to him in 2008, I have consistenly been doing the same thing with my voice and now he has another patient also that looses her voice. Crazy POTS! I had to record it for him so he can further research it as possible symptom too.
  7. I have found myself getting presyncope spells when I am rocking in my chair. So going to have to stop that! I have had it also without rocking also feels like everything is just dropping down inside. It feels like that also when I stand up too. So weird. My norm.
  8. I also see Dr. Khurana, and I would say the same thing as Katybug did about him. I really like him. Very thorough.
  9. There is a good app for iphone azumio checks your HR and you can type in what you are doing at the time. for $1.99 you can get unlimited recordings and you can export them to your computer by email and give them to your doctor. I have checked them with my BP ratings and pretty accurate.
  10. I am on Mestinon and Florinef also.
  11. Friday7, Yes, Restasis 2x a day, Refresh Liquigel eye drops up to 6x a day, and Genteal nighttime eye ointment in the evening before bed all for the eyes. All were told to me to be used by my eye doctor. He also recommended putting restasis in frig, so to cut back on some of the burning, does help a little, and can use the vial for more than one use if kept in frig because is so expensive. I can usually get 2-3 tx out of one vial. The Refresh Liquigel and Genteal are over the counter.
  12. I had a plug put in one eye for a trial basis, I initially felt a difference but then none. I didn't feel worth putting other one in, I was still using same amount of Refresh liquigel drops in addition to Restasis. I also use Genteal nighttime eye ointment and can tell a difference if I don't use it at night. It wasn't uncomfortable putting it in or anything, but just different for me. Best wishes.
  13. Yes, I have had the test, numerous times now, not my favorite thing. I do have dry eyes, I am on Restasis 2xday, Refresh liquigel up to 6xday, and a nighttime gel ointment also which helps most days. Fatigue increases symptoms as does computer and or reading which I can only do about 45 minutes at a time. They just burn a lot and I've gotten used to it and learning to live with it along with the other symptoms.
  14. I had one punctal plug put in one eye, initially I felt a difference but then I didn't. When I went back, we decided not to get the other one done and just to continue with all the drops and ointments. As for the Restasis, my dr. recomended putting in frig to help with the burning, it does seem to help. I also put in Genteal nighttime ointment prior to bed which seems to help also which is over the counter recommended by dr.
  15. I take 2.5mg 3xdaytime hours and it helps me a lot. I can really tell a difference if I have to get up earlier in the morning prior to taking the meds and try to function, it doesn't work very well. I do better a couple hours after I have taken the meds.
  16. 1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? The doctor has told me blood pools in lower part of body, abdomen and legs as he discussed POTS 2. Have you ever been diagnosed with EDS or suspect that you may have it? no, although have been told by rheumatoid dr that have very mobile joints 3. Do you experience symptoms when lying down even after a night of sleep in your bed? occasional increased HR 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? yes 5. Have you ever been informed by a doctor that you have low blood volume? no 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? yes 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? yes 8. Did your POTS arrive suddenly? yes 9. Is your skin pale? yes 10. Please the top 6 worst symptoms that you experience with POTS: heat intolerance & always cold exercise intolerance syncope tachycardia can't stand for more than 7 minutes migraines
  17. For my migraines, I take Frova and maybe a muscle relaxer depending on my symptoms at the first sign. I also take Fioricet for bad headaches as OTC meds don't work at all.
  18. I have said something about my eyes along with all my symptoms since my first doctors visit. It really concerns me. I get blurry vision. I ride down the rode and at times can't read the road signs. I can't read what is written on the tv. My eyes at times are jumpy and make it unable to read a book/magazine. I went to my eye doctor for my routine check up and mentioned these things along with floaters. She said my vision was ok, everything was ok, probably the POTS. But I can't see! I was sent out the door. Was very discouraged and going to again mention this to my POTS dr because it is really getting bothersome.
  19. I have had to adjust myself to be able to cook or bake. I start and then have to sit down, check on things, sit down again, and back and forth. Sometimes, my husband or son has to finish whatever I am cooking and some things I have given up on because my stand time isn't long enough to make homemade dumplings, or really nice dinners anymore. Thank goodness for my family because then have been very helpful because all too often they have had to help finish whatever I have started cooking because I can't finish it any more or have passed out. I also have had sciatica several years ago with 2 back surgeries and no longer have the pain, but pain could of been a factor in your passing out as well as stand time. Hopefully you will be able to discuss this with your doctor as to whether it was the sciatica or the stand time.
  20. Thanks so much ptalaura! I am hoping to find a dr willing to at least listen to my concerns. His office said that a first appointment is 1 1/2 hours long. That's by far longer than any appt. I've had so far. I'm glad you are pleased with your treatments. Do you live in MD? I am from the "countryside" of Western MD. Babette Actually I live in DE and travel 2 hours for each way for the appts. but it was a lot closer then Minnesota.
  21. I go to Columbia, MD and was also referred by that same hospital. He was very thorough and and was the first doctor that actually listened to all my concerns and symptoms and took me seriously. He did his own testing and so far I have been pleased with the treatments and visits. It was a choice of Columbia or Minnesota at the Mayo clinic and I don't regret it choosing Columbia at all.
  22. I know what is like to not be heard and not be believed with your symptoms. I have changed all my local doctors to out of town and had to go out of state and 18 months of testing( and still feeling like you aren't being listened to or believed "its in your head") before being referred to a neurologist for POTS. I am so thankful for a diagnosis and validation after 20 months. Although a November hospital stay, my husband told them I was recently diagnosed with POTS, however, I guess, they thought I made it up or something, nothing on my records about it and the records indicated this is not what I had. December hospital stay, same hospitalist, this time we were armed with a paper from my doctor validating all diagnosis which I carry at all times now, I was treated so differently it was amazing. He admitted to my husband(not to me) that he did not know much about this condition; if he had only asked me I probably could of informed him. What is it going to take for doctors to believe you?'; this isn't something you would wish on anybody!
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