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maggie

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Everything posted by maggie

  1. I had Dr. Cheshire for my neuro at Mayo. He did give me my dx, but unless things have changed at Mayo, they do not treat pots there. If you still want to go there I would make sure if this has changed. I was not pleased with Dr. Cheshire. I had to go home for three weeks and then come back for my testing. During that time he asked me not to do any research on pots before getting my dx. He stated that he would give me all the info I would need if I did have it. When I finally arrived at his office for him to give me my results, he told me I did have pots. Having done what he asked, not researching I didn't know what questions to ask. He gave me five minutes and we were out the door. I received my dx five years ago, I hope things have changed there. They did not refer me to any doctor in the state of Florida, nor would they. I was on my own trying to find a doctor that had knowledge with pots. I finally found a neuro who has taken me on, but it took eight months to find and much researching and phone calling. This was my experience with this doctor, others may have had something different. Maggie
  2. DancingLight, In regards to companion or service dogs, my daughter trained her bullmastiff to be a service dog. I called a government office to see what were the requirements for this title and I actually talked to a live person. Even though there are many sites on the net as to getting your dog licensed to be a service dog there is no government agency that actually regulates this. I couldn't believe it, but as I was talking to the gentleman over the phone, he assured me that as long as the dog was wearing a service vest, which you can get online, the dog was obedient, no one has the right to ask you about your disability or why you need the dog "hippa" laws, your medical history is private. So get yourself a dog and start training and you'll be able to have your own service dog without all the cost. My daughter takes her dog everywhere and has not been asked once in regards to why she is using the dog or has been denied to enter any place with her dog. She has traveled all over and has taken that dog with her. Maggie
  3. pat57 I received your pm, but when I went to send you a pm in regards to your questions it stated that I could not pm your account. I don't know if I'm doing it wrong or what but I tried twice and both ways I received the same response. Maggie
  4. This post is very important to me. I have Hep C from a transfusion I received years ago. I'm seeing a top specialist in Miami for this. There is a vaccine coming out in 2011 for Hep C. He is not giving me it when it first comes out, but waiting two years to see how my pots is doing and to see what the reaction to the new vaccine is. I'm slated to receive my vaccine in 2015 if all goes well with the vaccine. John's mom what are your thoughts in regards to getting the vaccine when I already have pots, will it make it worse, so many questions? I'm sorry your having such a difficult time with your son's health, I hope you can resolve some of this in time. Others on this site, what is your opinion on me getting this vaccine. I have untreatable Hep c, but so far it has done no damage to my liver. Maybe it's best just to keep an eye on it and not take the vaccine until it starts to effect my liver. Maggie
  5. My doctor told me not to fly commercial because of the altitude, not to go above 10,000 feet. I have flown in a small plane and stayed under that and had no problems. I do know there are others on this site that have flown commercial and are able. I'm sorry it doesn't really help you. I think you'll just have to try it and see how it goes for you. Maggie
  6. I have been struggling with pots for five years now and have been up and down with this battle. I would be able to get around and then something would come up again and put me back in bed. I was told by my doctors that in my case I would surley see a complete recovery, but that has not come to be. I saw on the bottom of you post that you have faith in Jesus Christ. He's is the one you need to go to at this point. Give all your worries, sickness, and sad thoughts over to Him, lay them at His feet. When I struggle with the very same issues as you I find a verse in the Bible and grab on to that and hold fast. Pslams 57: 23, "Give your burdens to the Lord, He will carry them. He will not permit the godly to slip or fall." Psalms 57:1,"O God, have pity, for I am trusting you! I will hide beneath the shadow of your wings until this storm is past." The last verse is Psalms 73:23, "But even so, you love me! You are holding my right hand! You will keep on guiding me all my life with your wisdom and counsel; and afterwards receive me into the glories of heaven!" My final thoughts to you are even if our lives here on this earth our plaqued with this illness to the day we die, we have eternity, never again will our bodies fail us in heaven. May God walk by your side during this trial, I'll be praying for you. Maggie
  7. I found the reason why my system is so sensitive to meds. I had my dna run and I was diagnosed with a liver enzyme problem. My CYP 2D6 liver enzyme does not metabolize meds right. If the med or herb goes through that enzyme it makes me very sick and I have bad reactions. It has been one of the biggest pieces to the puzzle in helping me with my pots. The doctor who ran the test explained to me that this is not such a rare thing, it's just most people don't get it checked out. Maggie
  8. tearose, My neuro stated that gatorade has too much sugar and isn't a great way to get the potassium, he stated right from my first visit not to drink that product. I've never have drank gatorade, soda, before pots I was a great iced tea fan, but that went as soon as the anxiety set in. It' been water ever since. He suggested to use canned soups to get more sodium into my diet, they're full of sodium, but I don't normally eat those either. I don't like to eat food that have perservatives. My pharmacist suggested making my own chicken soup that will provide plenty of potassuim and sodium. I guess what works for one doesn't always work for another. That's why I was so excited to see the suggestion of coconut water, alot easier then making soup. I just couldn't believe how sick I was on just 1/2 cup. I think I'll try just 1/4 cup and see what the results of that is. Maybe introducing it slowly into my system will work. Maggie
  9. I was told by my neuro not to drink sport drinks, but to use only water. Now that I have begun to exercise I've decided to try coconut water, the brand I bought was o.n.e. I was going to drink the 8 oz carton and my husband stated he wouldn't do that due to the fact that I've just been drinking water for 5 years now { 100 oz of water a day}. I followed his advise and I drank 1/2 cup of the coconut water and within ten minutes I was burping {sorry guys} and I had an upset stomach for the rest of the day and had difficulty eating. Should I try it again only drinking 1/4 and how often would you try drinking it, everyday, or just on the days I exercise? I can't believe it made me so sick. Does anyone have thoughts in regarding this issue? Maggie
  10. Hi Justin, Sorry to read your story and welcome to a site where people will understand all that you are going through. It's so sad to read that your wife isn't supporting you through this. As you keep coming to this site you will find that many people have gone through this same experience as you with their mate. The first thing I can tell you is that you are not falling apart even though it may seem that way. I had anxiety as well when I was first dx, that was my first symptom. Also like you, I have times when all I do is cry. I talked to my neuro about this and it's actually a symptom that can come when your heart rate is racing. It's nothing you can stop, it's your body reacting to what all is taking place. I hope in time you will be able to improve like some of us here and become more active again. It takes time to adjust to this all and then take small steps towards improving. Keep on this site read and learn and hopefully we will see other posts from you with better news then today. Maggie
  11. When I need to reach for something on the floor or ground outside, I never bend over at the waist, I always squat down using my legs to lower myself. I then use my legs once again to get up. This way my head in never hanging down, it's always in an upright position. I use my legs to lower and raise myself. It's a good workout and now I can squat all day long without having and dizzy spells, or getting my tummy upset. Maybe try this and see if it works for you. Maggie
  12. Your doctor has to do a stand upright ten minute stand for heart rate and blood pressure reading every three minutes. He doesn't want patients on meds for heart rate or blood pressure. There might be other reasons to be excluded but I think those are the main ones. I found an exercise physiologist in my area and had her make up a plan for me to use. Dr. Levine works with an exercise physiologist for his protocol. I found this to be better then Dr. Levine's program. It's customed tailored to meet my needs and I have her to right in my area if I run into problems, she can answer and help resolve. This would work for all those who don't meet his criteria. Maggie
  13. You don't have to go to Dallas to be in the program. You just contact Dr. Levine and he works with your doctor. You might be able to get into his program as long as you are not on any heart meds. I don't see why he wouldn't consider people from outside the US unless his grant will only work for those in the States. Just contact his office and they will let you know if you can apply to his program. Ashelton80 I do not believe you get vit d from a tanning bed it has to be from natural sunlight. There are many studies out there saying tanning beds are not good to use. Maggie
  14. I found the Mayo site where it gives the recovery rate of pots. Although it may be debilitating in some cases, POTS often can be managed so the person affected can return to an active lifestyle. For most, POTS is a disorder that will eventually go away. Optimism is appropriate! It's hard to believe that I found three sites all saying this, yet five years later I still have pots even with exercise. Maggie
  15. Stay active to speed recovery: Get regular physical activity to treat postural orthostatic tachycardia syndrome. The symptoms of POTS make exercising difficult, but it is critical to an effective recovery. A limited amount of moderate exercise, usually in bouts of 15 to 20 minutes per day for two or three days per week, can help to develop greater tolerance to daily activity and promote long-term condition management. Children with POTS usually outgrow the condition when they reach adulthood and staying active can increase the odds of a full recovery and make it happen quicker. Read more: How to Treat Postural Orthostatic Tachycardia Syndrome (POTS) | eHow.com http://www.ehow.com/how_5590821_treat-orthostatic-tachycardia-syndrome-pots.html#ixzz12ACTaKUY This is not from Mayo's site but from another stating exercise is the key to a quicker recovery. I'm tired now I'll look for Mayo's later. Maggie
  16. Long-Term Outlook for Patients The majority of patients with OI have a relatively mild disorder which improves over succeeding weeks and months. Most patients will eventually be free of symptoms. However, in some patients, the symptoms are more severe, the duration of the illness may be longer, and the expected recovery may not occur. Overall, on follow-up, the majority of patients with OI have improved. More than half of the patients remained on treatment. Those patients with antecedent events, such as a viral infection, appeared to do better overall than those who developed the condition spontaneously. I finally was able to copy and paste the article from the Vanderbuilt site. I'll try and find the one I read from Mayo's and add that one as well. Maggie
  17. I did more research on this topic and on Mayo's sight it states that 90% of pots patients recover. On Vanderbuilt's sight it also suggests that most pots patients also recover. While reading these two sights they stated that they estimate there are 500,000 cases of some type of dysautonomia. I think the count of users on this site is around 14,000 total. Are most of us on this site the 10% that don't recover? Just some thoughts I would ad to this forum. Maggie
  18. Potsdad's daughter is in the program now. I just asked him the other day how is was going. She's had some setbacks, but is still trying to continue on through the program. Maggie
  19. I was just on another site in regards to pots and that person wrote they believe most people with pots get better. To my knowledge there hasn't been any study done on this question. What are your thoughts in regards to this topic. Do you believe most patients who get pots have a complete recovery or just improve? Maggie
  20. Thanks for the update on your daughter's exercise program. I hope she will be feeling better soon and is able to get back to a routine. Maggie
  21. I'm sorry to read that your daughter is having other health issues other then pots. I'm sorry to change to subject, but I was wondering how your daughter is doing with Dr. Levine's exercise protocol. I know you can't explain what type of exercise she is doing, but I was very curious as to how that is going. Would you mind sharing that here with us? Maggie
  22. My doctor wrote a note for me that states I can't ever be on jury duty and I have never heard from them again. Maggie
  23. Simmy, Thanks so much for the information. My lawyer says my case won't come up at least for a year at this point, but I really appreciate all the help you have been. Maggie
  24. Simmy, I sent the info you posted to my lawyer and he told me to start the process. Now I have some questions for you. While my heart rate goes up it does go down while I sit. That's why I was denied the first time. They told me to get a job that only requires me to sit. Does your heart rate go down when you sit? How did you address this issue? I can get out maybe three times a week and I could never sit at a desk and work for eight hours. Another question I have is as I hydrate during the day my heart rate drops so it doesn't go up as fast later in the day. Is this going to be a problem? I'm sorry for all the questions. Did you write on the graph what you were doing at the time that your heart rate was up? As you can see I need alittle help here. Maggie
  25. Issie, I think I answered your pm please let me know if it worked. Thanks Maggie
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