JenLR

Looks really interesting. Thanks so much for posting the link!

I'm sorry you are having such a hard time. I developed gastroparesis about a year ago, and it made my POTS a hundred times worse. I spent a lot of time in the hospital because I felt like I was constantly losing consciousness. I was also receiving TPN through a PICC line until I asked my doctor to prescribe domperidone for me. I don't know if that is something that you've tried, but it was a miracle drug for my gastroparesis. Hope you find some relief very soon.

I don't think that I'm more prone to getting sick, but it does take me forever to recover when I do catch something. I caught a virus from my sister a month ago, and I am just now starting to feel better. SeattleRain, I can totally relate to your becoming a germaphobe! I don't even like sharing pens with other people now. I used to not worry about germs at all, but now I feel like I have to be extra careful.

I started gabapentin because I was having really sharp pain in my ears. I've been on it for a couple of years now, but I think the pain went away pretty quickly. Probably within a couple of days. For about a week after I started it, I had trouble walking in a straight line. My legs were very unsteady. But it went away, and I haven't had any other side effects since then. It helps so much with the pain for me. I'm definitely very grateful for gabapentin!

Congratulations! That's great news. I was so relieved when I found out that I was approved for LTD by MetLife. The whole process of trying to prove how sick we are is so stressful, so I hope you feel a great sense of relief! I was so scared that they were going to deny me, that I almost cried when I got the approval letter. I felt like it was the first good thing that had happened to me since I got sick.

My family is always trying to get me to post things about my illness on Facebook, but I never feel comfortable enough to do it. Good for you for opening up and sharing your struggles with so many people. Hopefully your blog post will help people understand what you're going through a little better. And I loved what you said about goodreads! It's become my favorite website, since so much of my time is spent reading now. I'm Jennifer Whitten on there if you want a new "friend" to share book recs with!

Thanks so much for posting such great news! I'm sure this is something we all both need and love to hear!

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 there more and do the things that you enjoy. But I also think that you should be as comfortable as possible while you're doing those things. Try riding a scooter, if you think it will allow you to enjoy what you're doing more. Or maybe just pace yourself when you go to the zoo. Plan ahead of time that you will only be able to spend 3 hours there, instead of 6. For me, I am just starting to be able to shop occasionally. I usually just go to one store now, instead of trying to go to many places all in the same afternoon. That way I can still get out and have fun, without making myself miserable.

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.

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!

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 potato. My nausea was terrible before, and now it is about 90% improved. I didn't really think that I had gastroparesis before I started taking this drug because two years ago I was tested for it and the result was negative. But now it seems that I do probably have it. So, you may want to ask your doctor about trying domperidone just to see if it will help. I know that I am very thankful that I learned of this drug from others on this forum. It has definitely saved me from getting a feeding tube and has greatly improved my quality of life.

I called the Cleveland Clinic in January and got an appointment in early April.

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.

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 that I am more emotional since getting the Mirena. I am usually not much of a crier, but ever since May I have noticed that it's very hard to hold back tears if anything is bothering me. And the main thing that makes me consider having the iud removed is that I have gotten dramatically worse since last summer. I spent several weeks in the hospital during the holidays with severe symptoms that I had never experienced before. My POTS specialist thinks that my swift decline may be because of a 5 week trial of Octreotide that I did about this same time, and he is probably right. But a small part of me wonders if the iud could be playing a role in the worsening of my symptoms. It may have nothing to do with it, but I still kind of regret having it put in. Anyway, sorry for the rambling post! I'm curious to see what other people's experiences have been.

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 better experience in terms of medication changes and follow-up. Good luck!

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.

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 before an administrative law judge in order to be approved for SS, but it was super easy and the judge told me right away that he planned on approving my case. I know this whole process can be very stressful (especially when we're so sick!), but stick with it and try not to let it worry you too much. I'm actually an attorney, so if you have any general questions, I will do my best to help you out with them. Good luck!

I've heard really good things about Dr. John Fortunato at Wake Forest in Winston Salem. He's a pediatric gastroenterologist that supposedly has a lot of experience with POTS patients. He did his fellowship at Johns Hopkins under a well-known motility expert. I know that he's been mentioned on this forum before. You can probably do a search on here and find out more. Good luck! I know it's so hard to find a good gastro.