Rachel

It is good to hear from you, Ernie. Thanks for coming back to give us an update. I'm glad that you are doing well! Rachel

It sounds like blood pooling. Our bodies don't fight gravity well. When a healthy person stands his veins constrict to send blood back up to his heart, lungs, brain, etc. But for us the longer we stand the more blood pools in our arms, legs, and/or abdomen. When you walk around your muscles contract and help to keep your blood flowing back up, so that's probably why you don't notice it when you're moving around. If you were to measure your ankles you would probably find that they are bigger after standing still for a few minutes. I did this once and took pictures for my blog to show others a little more about POTS. It's one of the few things that you can show to others that helps them understand a little about the severity of POTS. Rachel

I am so sorry for your loss. My thoughts and prayers are with you. Rachel

We didn't eat excessively salty food, but my mom did use salt in cooking - just enough to enhance the food's flavor. I did have lots of salt anytime we would eat out. Chicken nuggets and french fries were always a favorite of mine.

How wonderful! I pray that your family will be a blessing to her, and that she will be a blessing to you! Was it difficult to get approved to be a foster family with your POTS? I'm so happy for you. Thanks for sharing the good news. Rachel

Brain fog is common for many of us. When you don't get adequate blood flow to your brain it makes it hard to think! Some days my brain fog is worse than others. I've had it so bad at times that I didn't recognize my son, and my apartment no longer looked familiar. Even on the good days, though, I think slowly. I would much rather email someone than talk on the phone. I have a hard time keeping up with conversations. The thing that has helped me the most with brain fog is Cerefolin. Rachel

Hi Brye, I understand the difficulties. I use the Disney channel and DVDs much more than I would like to, but sometimes it's a matter of survival! At least watching a movie is something we can do together (or something William can do while I take a nap!). Here are some other ideas: Puzzles Coloring Play dates in the backyard with a friend who is willing and able to help you with your children A baby pool in the backyard Play-doh Books (a summer reading program at a local library may make this more fun for your 6 and 7 year olds.) Rest time/nap time (sometimes I have to make my son go play quietly in his room, but he usually ends up enjoying the quiet time to himself.) And I am now completely out of ideas. Can you tell we don't do much around here?! Rachel

Hi Mirry, Chaos is right. Orthostatice hypotension will be a part of PAF, but just because you have orthostatic hypotension doesn't mean you have PAF. So unless your doctors have diagnosed you with PAF then you very likely don't have it. Don't worry! I'm sorry you're having a tough day. I hope you feel better soon. Rachel

I wouldn't say that I have lost trust. I would say that I have learned to be careful, and I have learned where it is safe to place my trust. I have become wiser, and that's a good thing. It hasn't been an easy road, but I have gained a lot from it. At the beginning of the journey to find POTS I believed each diagnosis the doctors gave me, but soon learned that the doctors don't understand everything about every illness. I have learned to do some of my own reading and research, and I have learned to be my own advocate. Learning to not trust every doctor has been beneficial for me. Learning where I can place my trust has been invaluable as well. So I wouldn't say I've lost anything, actually. I've gained much more. Rachel

I'm a little late getting to this topic, but thought I'd add in a little of my experience anyway. I have been through some of the mito testing. I've had all of the bloodwork done, which showed some minor abnormalities, but nothing diagnostic. I've also had a skin biopsy for dna testing. Dr. Cohen is my mito doctor. He believes that I do have mito, but he said that we may or may not be able to find out exactly what kind. Because I have dysautonomia he didn't recommend a muscle biopsy for me. He said that the skin biopsies had been more helpful, in his experience, for those with dysautonomia because it is their nerves that are the most affected, not their muscles. He had a skin biopsy taken from my armpit (where there is a higher concentration of nerves), and ran a couple of dna tests. MNGIE was the one specific mito disorder that Dr. Cohen suspected I had (because of my gastroparesis and dysmotility), but that dna test came back negative for me. He still has my dna in storage, and when there are better diagnostic tests available he wants to run more tests for me. I might do a muscle biopsy at some point, but not right now. Since I saw Dr. Cohen last I have heard of two people with dysautonomia who were diagnosed with mito via a muscle biopsy. So perhaps it would show something for me as well. There have been a few mitochondrial disease discussions in the past. You might find some extra information in a search. Rachel

I haven't tried those, but I have worn something similar in the hospital, and it was a miserable experience for me. They made my legs so hot that I was more symptomatic with them on than off. Rachel

Congratulations, Lavender! Sleep....that's always a tough one, especially with a new baby. Usually I take melatonin, but you can't take that while nursing. I took 12.5 mg of Doxylamine Succinate (generic name for Unisom) while nursing Adelaide, and I still take it as needed. It helps me to fall asleep and stay asleep. It actually works better than melatonin for me, but it does make me a little groggier than normal in the morning. I also had help with nighttime feedings. Will always did at least half of the night time feedings. Once we reached the 4 or 5 week mark Will had to take over all of the night time feedings and morning feedings. That allowed me to get the sleep that I needed. I hope you can get some sleep soon. Enjoy that precious baby! Rachel

I have been on B12 injections in the past, but I never noticed any benefit. I have taken Provigil (Modafinil), and it is great for me for a day or two. But after three or four days I have to take a Provigil just to get up to baseline. I still have some Provigil, but I never use it more than once a week. Usually I just use it if I am having a "bad" day and really need the extra boost to make it through. Sometimes I'll also plan ahead of time to use one if I know a big day is coming up and I want to be able to participate. Rachel

I'll keep her in my thoughts and prayers during this difficult week. Rachel

Good visuals! The second one is my favorite.

I have been told that it is safe to use medications for 6 months past the expiration date, and then it needs to be thrown away. But check with your own doctor or pharmacist to make sure that this will be safe for you to do. Rachel

I'm so sorry about this bad news. I hope that your therapist's treatment will be successful, and I hope that you will be able to find a new therapist with whom you are comfortable. Rachel

This has happened to me before too. Somehow the settings on your personal forum settings reverted to the "outline" option. To change it back to what you are used to, go to the top of the topic you are reading. Look in the same box in which the topic title is found, and then go to the far right of that box. You will see a button to click that says, "Options." Click on that, and a menu will pull down. Go down to where it says, "Display Modes." The display mode option you are probably used to is "Standard." Click on that and everything will be happy again. Rachel

That is really good! Congratulations, Mack!!! I hoep the ACT goes well. Rachel

This post is not heading in a direction that is beneficial for our members, and thus I am closing it. As Michelle has recently reminded us, DINET is not a place for solicitation, and a tone of kindness and respect is appreciated in all posts. Rachel

Welcome back! I hope you'll be feeling better soon. Rachel

Salt tablets should be taken with meals. I took one once before a meal and it was awful! I was able to get food and drink in me before I threw up, but I came very close to throwing up. I'm surprised that taking salt tablets immediately following a meal made you throw up. Had you eaten a small meal? Or perhaps two tablets was one too many for you? You can check with your doctor to make sure you are getting the right amount of fluids and food with your salt tablets. I don't know about the Florinef. I've tried it a couple of times, but it never did anything noticeable for me. Hopefully someone else can help you there. Rachel

I'm so sorry that you've had a flare while on your trip. How disappointing. I hope that you'll be feeling better soon, and I hope that you'll be able to enjoy the rest of your trip. Will you still be able to go see the Grand Canyon even if you can't spend the night there? Rachel

I'm glad that Rene is out of the hospital now. I hope she can join us again soon.

The tingly/goosbumpy feeling usually goes away in time. I think it took several months for it to go away for me. Each time we titrated up the symptoms would return. Once I stayed at 10mg for a while the tingles and chillbumps rarely came. The do occasionally return a little bit, but they aren't constant anymore. Rachel