Jump to content

sarahm

Members
  • Content Count

    55
  • Joined

  • Last visited

Community Reputation

0 Neutral

About sarahm

  • Rank
    Advanced Member
  • Birthday 11/29/1980

Profile Information

  • Gender
    Female
  • Location
    Boston, MA
  1. I own a Concept II rowing machine. I bought it used off of craigslist. They are quite pricy new, but you can usually find a good deal used and I'm told they pretty much last forever. Concept II is the go to brand for people who actually row. I don't really know much about other brands. I started rowing at cardiac rehab, and I liked it so I ended up getting my own. I started basically as slow as you can go on the rowing machine, they go by watts at cardiac rehab, I believe I started at about 10 watts. I would do 10 minutes at a time. Now I pay more attention to my heart rate than the wa
  2. edriscoll, You are very lucky to have the support of your doctors. And I agree its really important, but unfortunately rare to find doctors that are willing to make an extra effort. My doctors were unfortunately not coorprative and I had paperwork that did not get completed as a result. My specialist is Dr. Grubb who has a policy that they will not fill out any disibility forms. I think this is a terrible and tragic policy as he is one of the few doctors in the country that truly understands POTS. I travel half way across the country to see him because I can't find anyone else closer, so
  3. Hi everyone. I went through my SS disibility hearing last week. I was incredibly nervous about it beforehand so I thought I'd give you all a summary so that anyone else who has to go through it can have some peace of mind. It really was not that bad and the worrying leading up to it was worse than the actual hearing. Actually this was take two of my hearing, which is a bizarre story. But the take away from hearing number one was be prepared to wait, bring water, crackers, medication whatever you need because it might be a long wait. Also make sure your medication is in the prescription bo
  4. I tried it and it helped a lot with the brain fog, but it made my insomnia worse so I stopped. Now I take a very low dose of adderall and I'm happy with it.
  5. I have started seeing Dr. Grubb. There is a local POTS specialist where I live, but he had run out of ideas and I wasn't ready to give up. Dr. Grubb is very knowledgable and up to date on all the latest research. And very willing to experiment, my previous doctor was very timid about new treatments. I have tried several new drugs with him, some help some don't. It is really hard to get a hold of anyone in their office between appointments. I'm glad I started seeing him, but it's not without its headaches. As far as cost and testing, you can call and ask about your specific case. But I
  6. I also had sudden onset POTS that started in April 2011. My progress has been slow but steady. I was basically bedridden and now I can walk about 2 mile on a good day. My doctor is a POTS specialist and has told me that the majority of people that have "true POTS" get completely better. According to his definition "true POTS" is POTS and only POTS no other underlying conditions. Many people have postural tachycardia do to some other underlying condition and he would not consider these people POTS patients. They are still not 100% sure if I have POTS and only POTS, as I have some symptoms
  7. I see him and I have been a subject in some of his research. Bella what cardiologist do you see? I have a second appointment with mine at the end of the month, but so far I'm kind of eh about her.
  8. Where are you planning to donate the money? I am planning to donate to the hospital that has been treating me. They have a POTS research program there and I have participated in a few of their studies. I don't know if thats the best place though. Also I was going to use one of these websites that allow you to set up personal donation pages. There are so many though, its kind of overwhelming. If anyone has experience using those websites and can suggest a good one that would be helpful.
  9. Hi I'm planning on organizing a walk this spring, but just for friends and family. I would love to compare notes if you want to. Sarah
  10. I just finished cardiac rehab and insurance payed for it. I was their first POTS patient, but they talked to my doctors before I started. They were very good to me, it was a great experience. It is in a class so the program is somewhat fixed, but they adapted to my needs as much as possible. They were great to work with and helped me experiment to find out what I could tolerate. They also pushed me to get comfortable so I could continue on my own in a gym. I did one session, but they felt I wasn't ready to graduate so my insurance approved a second session. I eventually decided I needed
  11. Hi and welcome to the forum. I have had a lot of trouble sleeping as well, and it has been improving as my health improves. I found that having a fan on helps with the sweating tremendously. Not just during sleep, I used to take a small fan with me everywhere I went. Have you tried melatonin? It is an over the counter supplement found with the vitamins. You take it a couple hours before going to bed. It worked great for me unfortunately I would feel really groggy for a day after taking it, so I only do it when I am desperate for a good night sleep. Also start with a small amount like 1
  12. I updated to add the resting heart rate. I am actually kind of shocked how low most peoples standing heart rates are. I wasn't expecting that. Are those of you below 100 on medication? I am on two meds right now and my standing heart rate is still around 100.
  13. I know we all have good days and bad days. But on an average day what is your typical standing heart rate?
  14. I had the same problem and tried about 4 different ones before I found one that would work on me. Its made by Panasonic.
×
×
  • Create New...