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bkweavers

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About bkweavers

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    Advanced Member
  • Birthday 08/22/1970

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  • Gender
    Female
  • Location
    Wisconsin

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  1. Hello, I went to a new massage therapist this past week. After talking briefly about my neck and back issues and migraines, she asked if I had ever had cranio sacral therapy. I said no but said I was interested in it. She said she was going to try some movements during the massage. (I did not tell her that I have IST and possible Pots.) I had the massage and felt great for the next day and a half. Two days after, I started my day but ended up with a dizzy spell and then was dizzy for 3-4 hours and no appetite. More lightheaded ness and dizziness the next day and now again today, my head
  2. My husband was let go of his job in October. He had been there for over 29 years and we had been on the same insurance that entire time. Thankfully, he got a new job but we had to move to the Madison area. With new insurance, I now have to give up my neurologist for Botox treatment for migraines and my cardiologist. (She actually left the area I had been living in so I would've been searching for a new doctor anyways.) I have Inappropriate Sinus Tachycardia and Chronic fatigue syndrome. I'm looking for a neurologist as well as a doctor who can treat me for my autonomic illness. I also had
  3. You can try the chiropractor but honestly, it never helped my daughter's dizziness/vertigo. She had POTS and the dizziness was daily.( I don't say that to scare you because it may not be the case for your son. )Before her diagnosis of POTS, she was checked out by an ENT and the dizziness was not due to vestibular or inner ear. It was and is a symptom of POTS. Does he have other symptoms besides the dizziness? Brenda
  4. I'm with Bombsh3ll! My daughter had POTS for close to 8 years starting at the age of 11yrs. She wasn't upright for 3 and a half years and was so miserable from her many symptoms. Relatives close to her saw all that she went through and yet, they were the ones who we ended up fighting with because they just didn't understand the limits of this illness! Our relationship with them has never really been the same. I've learned that those who really "get it" and offer continued support are the ones who I value and keep close. Now, that I've been diagnosed with IST, I don't even try to explain or ta
  5. Thank you for the information ladies! I have an appointment with a neurologist but not until April 2nd.
  6. I'll try to make this as short as possible. I've been a member of Dinet for many years because of my daughter having POTS. Thankfully, she's doing beautifully but me on the other hand, not so much. I've been diagnosed with CFS, hypothyroidism, RLS, and migraines. I also suffer from neck and back pain. The migraines and RLS started in my early 30s. Last year, I was experiencing frequent tachycardia, more fatigue, and a feeling like an anxiety attack with heat intolerance and lightheaded.ness. After testing, the cardiologist diagnosed me with Inappropriate sinus tachycardia. She said she co
  7. My daughter also had daily headaches for the first 9 months after being diagnosed with POTS. They didn't present exactly like your daughter's but what finally helped for her was extended release alprazolam or Xanax. I think my biggest piece of advice is to find a dysautonomia specialist for your daughter. I understand if money is a reason for not being able to pursue a specialist but if you're able to , it is well worth it to have a knowledgeable doctor who can help her, even if it's a doctor who doesn't normally see adolescents. We drove from Wisconsin to Ohio for a few years until we
  8. -My heart goes out to you and your daughter. At the age of 10, my daughter was diagnosed with POTS so as a mother, I know some of what you're going through. She is now almost 21 and is almost symptom free so there is hope. (That sounds like a long time doesn't it? She started to feel much better around age 15) It sounds like you're on the right path to getting an official diagnosis. I hope that your upcoming appointment with the cardiologist is positive. We met a number of doctors along our journey that claimed to know POTS but didn't so my advice to you is, if you're not happy with this docto
  9. Thanks to both of you! You pretty much confirmed everything I was thinking but because my daughter had both blood pressure and heart rate changes during her tilt table, I was a little uncertain. I'm also concerned that the doctor she has doesn't have a lot of experience with POTS, even though he claims to know about it. I had already told her from our experience, that she might need to seek out a doctor who has lots of experience with autonomic disorders and not just one who knows a little something about it. I'm really hoping she will take my advice and seek how a better doctor. Thanks again
  10. Hi everyone, I have a friend who recently went to a cardiologist for symptoms that have been going on since childhood. She just always had lived with it but recently, her symptoms had worsened so she decided to finally get it checked out. After talking with him, he really was convinced that she has POTS. She had a tilt table test done and due to the fact that her blood pressure didn't fluctuate enough, he now says she doesn't have POTS. My daughter has POTS and she never had large fluctuations of bp either. My question is: Is there anyone on here who passed the tilt table test but went on to
  11. My daughter was dizzy beginning when she woke up on March 13, 2007 until approximately 3 and a half years later when it began to clear-slowly. It was 24/7. She also described it as she was spinning. At times, it would be better when lying down but other times, it would get so bad that she would hang on to the sofa because she felt like she was going to fall off. Her dizziness got even worse when her periods became worse and happened twice a month. So, I understand some of what you're experiencing with your daughters. I don't like to tell you this but for my daughter, we never found a medicatio
  12. It's been almost 8 and 1/2 years since my daughter became ill with POTS at the age of 11. In the first couple of years, I was constantly on this forum. I can't imagine what I would've done without the help, advice, and support I received. Once in awhile, someone would post an update about their child with dysautonomia and how much better they were doing or how they were attending college. These posts would give me such hope for her future. Now, I'm happy to report how well my 19 yr. old daughter is doing! For 3 and a half years, she was so dizzy that she could not even be upright - sit, walk,
  13. You have many of the symptoms of autonomic illness but you really need to rule out other things before you would assume it is POTS or another dysautonomia illness. I hate to say it but for us, my daughter had to go to an ENT and have other tests done to rule out other illnesses. If you can get your doctor to refer you to a POTS specialist, I would highly recommend Dr. Barboi at Rush Hospital in Chicago. He used to be my daughter's doctor before moving. I can't say enough positive things about him. He's very knowledgeable about dysautonomia. I can't say the name of the other doctor from Chicago
  14. Thank you for all the great suggestions/help so far! I don't know if she'll be able to do criminal justice completely online but we'll see. I'm not sure if being a police officer will even be doable unless she gets better in the next few years anyway. Anyone else out there have more stories or helpful suggestions on doing college?
  15. My daughter is a senior in high school and is looking into local colleges and living at home. Her POTS is way better than a few years ago but winter seems to always be the worst with her either getting sick and then Potsy symptoms with it or just dizziness and fatigue for no reason. Then of course, she misses school and it's difficult to make up all the work. My husband and I are concerned if she'll be able to handle college full-time. First of all, what did you do to make the college aware of your illness? What accommodations were you able to get? Any info you can give us, would be so appreci
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