Rachel

I have been taking both Alpha-Lipoic Acid and Acetyl L-Carnitine for close to a year now I think. They have both been helpful, but by no means even close to a cure for me. They haven't had an effect on presyncope, syncope, or dizziness. They have helped some with brain fog. They don't help as much as Cerefolin NAC, but they have helped. The other thing they have helped with is energy levels. I'm able to do a little bit more when I take them and I don't feel as awful. I still feel awful, just not as awful. I'm still home-bound unless someone can take me out, and I still have to be in bed 18 hours a day. So definitely not a cure for me. Technically I do still have a diagnosis of POTS, but that doesn't really describe me well anymore. Over the years my symptoms have progressed, and my doctors now believe I have a mitochondrial disease. It was for this reason that I was prescribed Alpha-Lipoic Acid and Acetyl L-Carnitine.

Dr. Raj said in the article that he is currently working on research to determine the reason for the low blood volume that many of us have. I hope he finds some answers. I'll have to keep my eye out for more information regarding that in the coming months and years. Yogini, I found it interesting, too, that the patient they interviewed who had followed Dr. Levine's protocol didn't benefit from it at all. In fact, it made her much worse. I do agree with the doctors that exercise is important. My doctors have been telling me ever since 1995 when I was diagnosed that exercise is important. I feel better when I move around as much as I can every day. But I have also found that if I over-do it too many times then I get worse in the long run.

There was an article this week in the Pittsburgh Post-Gazette about POTS: Nausea, dizziness, weight loss, headaches, vomiting: These symptoms sometimes add up to POTS http://www.post-gaze...1206625-114.stm It includes quotes from several dysautonomia doctors. It doesn't go into how severe POTS can be for some of us, but neither does it say that we all get better like we've seen written sometimes. It is good to see another article spreading awareness!

We just need to live in swimming pools or anti-gravity stations.

Medicaid programs vary from state to state, but I think it is pretty likely that you could get help like this. You'll need to check with your state Medicaid and possibly apply for a medicaid waiver if you qualify. Your doctor may also know the answer to this since he probably regularly deals with medicaid patients. Rachel

I'm pretty sure that "google" just means that the google search engine is here. Occasionally you'll see yahoo too. "Guests" are individuals who haven't registered (or haven't logged in), but are reading on the forum.

Thank you so much for sharing all of this! That is really interesting, and I appreciate the detailed information. I hope that this treatment helps you. Please keep us updated! Rachel

Thanks for sharing. It's good to see a study that concludes we aren't just ill from deconditioning.

I had big babies too. 9lbs 8oz for my son who was born at 41 weeks. My daughter was born at 39 weeks, and she was 10lbs 1oz.

LindaJoy, I'm sorry your account is giving you trouble. Send me a PM or an email at dinetforums(at)gmail(dot)com and I can help you get it fixed. I do get lines on my fingers occasionally, but they aren't as deep as the ones I have seen in pictures of Beaus lines. I'll have to start paying attention to see if it corresponds with times when my blood pressure stays low. Rachel

It's interesting how many of us were so athletic before becoming so ill. I was a year-round competitive swimmer when I first started noticing symptoms of POTS. I swam 3 miles a day, 5 days a week. I also did weight lifting for 2 hours a week. Beyond that, I did ice skating once or twice a week. I also did about 10 hours of babysitting a week, and I was one of those active babysitters - running around, playing games, cooking supper, giving baths. I was busy! Eventually I had to quit swimming, but I continued with ice skating (about 2 hours twice a week) and babysitting for the last 3 years of high school. My health even improved enough that I was able to be a camp counselor for 5 summers (end of high school and first years of college). It was hard, and each summer was successively harder on me physically. I'm so glad I pushed it, though. I'm mostly homebound now, and I'm so thankful that I took advantage of my healthier years.

I enjoy reading, crocheting, and blogging. When I am too tired to move I like to watch shows on hulu or tv. I like to play with my children as much as I can - usually while in my recliner or lying down on the floor. Though they are becoming much more rare, I enjoy going for outings in my wheelchair when I can. It is nice to get out of the apartment every once in a while.

Paona just posted this article in another topic, and I wanted to post it here too in case you didn't see it. Anesthetic Consideration In A Patient With Postural Orthostatic Tachycardia Syndrome http://www.ispub.com...a-syndrome.html If you don't get many replies here, you may find some of the posts in Paona's current topic helpful. http://forums.dinet....191#entry175191 You might also find some more information by doing a search. I know that surgery has been discussed many times here before.

Have you ever been tested for gastroparesis? This could explain the lack of appetite, and it would explain why you feel so full after eating just a little bit of food. I hope you can find some answers and a better nutritionist. There are some good ones out there. Rachel

We are going to be getting together soon. If anyone else wants to come, or if I accidentally missed your name when sending out emails, please let me know! Rachel

Warm winter gear and lots of layers helps me. I used to live in Alaska, so I have some pretty warm stuff. I have noticed a big difference in how warm I stay when I wear my winter -30 coat compared to my wool pea coat. When I wear my coat rated for -30 it's like the cold isn't even there. I also really like my thick fleece scarf. It is soft enough that I can wrap it around my face if necessary. A hat can help a lot, especially a stocking hat that is thick and fits snugly. Mittens are great and much warmer than gloves. I am becoming more intolerant to the cold as time goes on. It takes so much energy to keep warm that it just wears me out, and I get really tired. I also find it harder to stay warm since I can't walk around and keep warm. I have to go out in a wheelchair, and riding in a wheelchair across a parking lot gets chilly! My legs get cold since they aren't covered by my coat. If I ever move north again I will be investing in a long coat that goes down nearly to my ankles. Warm thoughts , Rachel

It is possible for some people with POTS to have successful careers. Not all of us can work, but there definitely are many who do. Most people on the forum are here because they are so sick and need information and support. Those who have gotten better from POTS don't tend to stick around on support forums. So there are probably many more with POTS who are out there and working. I hope that you are able to find the right treatment and start feeling better soon. All the best, Rachel

I wonder if the level of activity was too much for her to maintain. Maybe her current level of activity is something she can do for a short time, but not for the long run. Personally, I can have a couple of weeks were I can push myself and do more than my normal. My health seems pretty stable at first, but I can't maintain that level of activity for weeks on end. If I give everything my body has to give every day, then I always get worse in the long run. I can only push myself to my absolute physical limit 2 days a week or less. I have to pace myself and find the right balance of activity and rest. I hope you can figure out what is going on with your daughter, and I hope she'll be having some better days again soon. Rachel

The poll feature on the new forum is a little confusing. After you click "finish" for the poll it will disappear from view until you publish the new topic. You will be back at the normal page for typing up a topic. Type whatever you want to for your post, and then post the topic/poll. Once you click "Post New Topic" the poll should show up in the published topic on the forum. Hope this helps. Let me know if this doesn't work. Thanks! Rachel

First of all, Congratulations on your little one! I hope that your pregnancy goes well. Wow, a bp of 70/40 isn't good, and neither is being dizzy and vomiting. I hope that you and your doctors will be able to find the right treatment for you and your baby during pregnancy. Here is my experience with my last pregnancy. I took midodrine through the whole 9 months. I took 15mg 3-4 times a day, and delivered a 10lb baby at not quite 39 weeks! No growth retardation there! I did discuss midodrine with my OB and a high risk OB, and they both agreed that it would be best for me and the baby if I took it throughout pregnancy. Part of the concern was for proper bp and blood flow. I have significant blood pooling, and there are times that there has literally been a line around my waist, above which was normal skin color, and below which was blueish/purple. The concern was that without the midodrine I would have too much blood pooling, thus preventing adequate blood flow and oxygen to the baby. It is true that midodrine has been shown to cause growth retardation. However, this has only been shown in rat and rabbit studies when the medication was given in 7-13 times the maximum dose. Plus, the rats and rabbits didn't need the medication in the first place. I think it must be different for someone who needs their blood pressure to be raised. From what I understand, midodrine has never been reported to have caused low birth weight in a human baby when the mom took the med during pregnancy. Just to be safe, my OB ordered ultrasounds every month to check the growth of the baby. For the last 6 or 8 weeks I had ultrasounds every other week. I also wore compression throughout pregnancy. This could be an option if you choose to be off of midodrine. I work knee high compression hose and mid-thigh to waist compression. I wasn't sure if I would be able to wear them even to the end of pregnancy, but it worked out just fine. The waist of the compression slowly stretched with me, and it fit well even when I was 9 months pregnant. I hope that everything goes well for you. Some women with dysautonomia feel better during the 2nd and 3rd trimester because of the increase in blood volume. Hopefully it will help you too! All the best, Rachel

Midodrine has been beneficial for me. Has it helped me to improve? No, but it has helped more than any other medication. I first noticed symptoms of POTS in 1994. Since 1999 I have been progressively getting worse, and no treatment has been able to stop this. I have been taking midodrine since 2007. Without midodrine I would have to spend even more time in bed, and that would lead to even more deconditioning. So it hasn't helped me to improve, but it does give me a better quality of life.

That is such a great idea, and so thoughtful of your boys!