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About JenLR

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    Advanced Member
  • Birthday December 29

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    Little Rock, Arkansas

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  1. I just went to CO for the first time since having POTS, and I had a terrible time. I didn't get typical altitude sickness, but my POTS symptoms were all much more severe due to the altitude. I had syncope for days, and felt like I was going to pass out constantly for ten days. I almost went to the emergency room three times because of some very scary symptoms. I could not wait to get out of there!! I will never go back to the mountains as long as I have POTS. Once I got home, the severity of my symptoms lessened greatly.
  2. Thanks, Jesse! He wants me to try Northera because I have never been able to handle more than 2.5mg of midodrine every 3 hours. If I take more, I end up having a lot of side effects. I've had a couple of hospitalizations in the past three months, and haven't been doing well at all this year, so I think he is hopeful that the Northera will allow me to be up a little more. I guess I'll find out if it works soon! I'm not very hopeful, but I'll give it a try.
  3. Thanks for the well-wishes!! I am definitely planning on spreading out the medicine changes by a few weeks. I'll start Emend this week, but it will probably take at least two weeks to get Northera from the specialty pharmacy that you have to go through to get it. Christy - sorry that your son didn't get to try Emend. I was really surprised when I heard that I will only have to pay $60/month for it. I thought the co-pay would be a lot more. I'm not really expecting it to work as well as domperidone, but I'm definitely willing to give it a try.
  4. I just got home from a long trip to Toledo to see Dr. Grubb. He wants to make a couple of changes in my medications, so I'm trying to learn all that I can about them before I start them next week. The first drug that he's putting me on is Emend (Aprepitant) for gastroparesis. I've been on domperidone for a few years now, but he is hopeful that Emend may be a better alternative. I know that there is a clinical trial for this drug and gastroparesis patients taking place right now, but that is the only thing that I can find about it being used for anyone besides chemotherapy patients. Does anyone
  5. Thanks so much for posting such great news! I'm sure this is something we all both need and love to hear!
  6. I am just recovering from a period where I was in a wheelchair for about 4 months. I was having constant presyncope that lasted for months, so if I had to go somewhere, then I used a wheelchair. This was very weird for me. It was kind of hard to get used to people looking at you differently, but the wheelchair helped, so I used it. Now that I am finally feeling better and am able to walk more, I am not using a wheelchair. I tend to avoid the places where I don't feel like I can walk around easily, like big department stores or walmart. I think that's great that you're trying to get out t
  7. I saw Dr. Grubb today, and he said that he could keep me on up to .2mg of Florinef for the rest of my life, if needed. He commented that he doesn't like to go higher than that for long-term use.
  8. Welcome to the forum! Sorry that you are having to deal with this awful syndrome. I'm 32 as well, and have been struggling with this for about three years. Fatigue is one of my worst symptoms, too. I hate that it keeps me from doing so many of the things that I want to do. I hope that your doctor is able to find a good combination of meds to help with your symptoms. I have tried so many medicines that didn't work, but have also had luck with a few. Hopefully, the next drug your doctor recommends will be the one that starts to help you feel better. Good luck!
  9. I've had severe stomach problems for the past six months. I lost 25 pounds in a couple of months and was hospitalized three times due to severe POTS symptoms. I ended up having to get a PICC line so that I could receive TPN for about ten weeks. My doctor really wanted me to get a feeding tube, but I asked her if I could try domperidone first. I started the domperidone about six weeks ago, and so far it has helped me SO much. I wasn't able to eat anything more than baby food, white rice, and liquids for about six months until the domperidone. Tonight I actually ate fried oysters and a baked
  10. I called the Cleveland Clinic in January and got an appointment in early April.
  11. I take B12 shots once a week because of my deficiency. I know that a lot of people can really tell a difference with the shots, but I don't notice any change in the way that I feel. I have to get my blood drawn about once a week, and B12 is usually one of the standard tests that they do.
  12. I'm really glad that you posted this question. I've had the Mirena iud since May and have been trying to decide if I should have it removed or keep it in. I originally got it because my doctor recommended that I stop my cycle in hopes that I could avoid feeling worse for a week or two every month. When I first had it inserted, I had quite a bit of pain for about 5 weeks. The pain then subsided and after 5 months or so, my periods stopped. Great, right? The problem for me is that I have been having really painful ovarian cysts every month that can last for up to a week at a time. I also find th
  13. I saw Dr. Flipse a couple of years ago when I was first diagnosed with POTS. He was very nice and respectful. I was on metoprolol and Florinef at the time, and he didn't make any changes to my medications. My experience with Mayo Jacksonville was that they were wonderful for diagnosis, but they did nothing for me in terms of treatment or follow-up. The only treatment that they offered me was a prescription for amitriptyline written by the neurologist. It didn't work for me, so I had to find another doctor to help with treatment. But if you live in Florida, then hopefully you will have a much
  14. I have appointments with Dr. Jaeger and Dr. Shields at CC in a few weeks. I'm a patient of Dr. Grubb's and really like him, but I'm wanting to have some more testing done because I have had several lengthy hospitalizations lately and have been feeling much worse. I'm now having second thoughts about seeing Dr. Jaeger after watching him on the ABC news interview and reading some more things on the forum. I may just see Dr. Grubb and Dr. Shields while I'm there and skip the CC syncope clinic. Let us know how it goes for the rest of the week.
  15. That's great that you have already been approved by your private LTD plan. My attorney told me that it is typically much harder to get approved by a private company for LTD than it is to be awarded Social Security. So, hopefully you will eventually be approved by both. For me, it took a few months for SS to deny me the first time. But at that point I had not been diagnosed, so I knew that it would not be approved. A few months later, I received my diagnosis from Mayo. It took several months for my private insurance company to approve me, but eventually they did. I ended up having to go
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