tinkerbella

I was on for several months. I felt so bad though I had to stop the madness. I regret the fact that I didn't keep a diary of everything. I have been so physically exhausted and I haven't trained the dog to take notes yet. I also meant to say that I'm really sorry that you are having such a hard time and if there is anything I can do for you, please now you can count me in as a friend. This life is hard especially the long days of being alone. I went to salt tabs after stopping Florinef. Then soon after iv therapy. Everyone has to do what is right for them.

I always just stopped, as it made me so miserable. : ( Best of luck to you! ((((Hugs))))

It made me so sick with with the worse headaches. I still fell asleep taking the med that I decided not to refill it. Coffee is a better choice as long as I only have just one. : )

Have you tried oil of oregano? You put 2 drops in water twice a day. I'm just looking into to starting this myself, as I heard it helps fight off all infections especially yeast.

I use it but have had to increase it very, very, very slowly over the past 6 years. I took away my memory @ first. If you are sensitive to medication, go very slow. It was scary. Because I didn't know. Someone had to tell me. : ( I don't have many things to use to lower my HR due to sensitivities. Good Luck!

I love mine wedge. It is similar. I got it from a friend.

When I was younger I cut myself my accident and woke up on the floor. Since then I have had problems passing out on the toilet on the middle of the night. Also walking to the bathroom in the of the night. We had to do several 24 hour BP monitors each time this would start to happen. To prove this was happening. If I sit up too long at my computer it can also happen and I've been told I pass out in even in bed sitting up.

I always wondered about childhood warts. The herpes virus for those of us that have had this forever. Later mono, EBV and then having very high titers. Just a thought. I had warts as a kid on my hands really bad , then the other two along with a terrible case of the chicken pox. I hope I never get shingles. I need to ask about the vaccine. I have been a bit afraid of it with POTS.

Nice job : ) Rich! As my eyes are so so dry tonight and it becomes painful to even read this post. I wonder if we are just so dried out. Our whole wiring system from head to toes, the plumbing, the tummy, the ins and the outs, our eyes, the nose, our joints and our skin. If it's all dried out how can it work right? Then it itches, tingles, hurts, heaves,won't focus, won't move. it might seize, or faint, or freeze,or all those other things that make use feel potsie and so miserable. At least we have each other : ) ( : until they find a cure. Till then I'll buy a round of hugs. (((hugs))) Bellamia

Glad I could help Blue : ) We all need to smile for a while.

Weatherman, Hope today you are feeling a bit better knowing you are not alone. I wanted to let you know that there are heart rate apps for free also. They are pretty good also and will save you the money for the price of a watch. They also track your HR if you want. : ) Check them out.

Hi Blue, I itch, flush, get hives and my trypase level is getting high. I just bought new cream to make a new batch. I use face cream from trader joe's. I love it. It is so gentle and mixes well. I also use there other cream that they sell. It is a little thicker body lotion and I use that one for the rest of myself. I got the names of these creams from a mast cell forum where someone made their own gastrocream. I can use it twice a day. Here's a link: http://www.mastokids.org/mml.php enjoy the cream .

I can't tolerate gastrocrom oral and have to put it in cream to put on my skin. .

It drive me insane @ times. I'm itching right now!!!

It's out and thought my bladder would never wake up after surgery. Had to go home with the cath in for a few days. Then my bowels decided not to work and I ended up right back in the hospital, till they could get them working again. I was in the worst pain ever after. : (

(((((((BIG HUGS))))))) Know that we are here for you! POTS has our whole body in a constant state of confusion, it is no wonder that there is anxiety! Try to live in the moment. Have someone check and see if any of your meds side effects are causing extra anxiety. If you have a smart phone or iPod use free apps that help you to relax, stop worry, to sleep and others to just distract your mind. Keep us posted on how you are doing. We all care here.

I had to take the PE every am when my BP was so low even with my iv before I got out of bed in the morning to bring up my BP. The PE worked but soon had a rebound effect and my sinuses were soon in trouble and I had to stop. The PE also made my anxiety terrible. So, I tried to avoid the PE as much as possible. Recently, my BP has been dropping and I would have to take it. I also been having a lot of eye pain. I have stopped the PE. I have a retinal hole/cyst ? Macular ? In one eye. The pains have become so bad this past week. : ( I hope we all get better soon!

Have you looked into cooling vests? I just have a tie that I soak and it goes around my neck. I used to take my photography vest and stick ice packs in all the pockets to cool down with. : ) Also, when you go for the barium swallow make sure they understand you have POTS. I arrived in my wheelchair, but I had to stand holding on to the x-ray table that soon turned into a tilt type table. Even though I told them, I know they didn't get it. I was soon tossed up and over way too fast. I wish I had said to everyone that they had to move me VERY SLOWLY! I felt like I had been on a carnival ride gone wrong. I never could do those rides anyway. : ( After I was so bloated and on a lot of pain. My system took many days to pass all the barium, even with all the extra fluids I took in. Once again, Good Luck ~ : ) Susan, a great big welcome to you too! I don't like the reason people have to find us, but I have made the nicest friends here. I hope you both do the same. This is a great place for knowledge and support!

I also believe all the chemicals in the shampoo and hair products I used were making me sick in the shower. I went to all natural products only!!! Once I found out I had a Neuro disorder I stopped using hair color. My hair is a nice color already, no more dye for me.

I remember once I was at my sister's house and after a shower her husband noticed my legs being so red and asked why? I had no idea way back then I thought it was normal. Plus I always hated washing my hair as it left me exhausted. When I got a chair for the shower after my first biospy. I remember thinking how did I ever shower standing up? I used to have to sit in the tub to finish.

Hi everyone, I'm so sensitive to all the above. There are times I try to wear a bandanna around my nose and mouth like a makeshift mask to keep any chemicals out. I try to wear large sunglasses as much as possible too. Peroxide mixed with water cleans great in a spray bottle. I use dryer balls and love them. That way there is no fabric softener. I save money and the clothes dry faster and are softer. I think I'll get a steamer myself : ) both hand held and for floors. Kill germs and no chemicals. Pays for itself in no time at all.

Welcome aboard, I hear you loud and clear.. I don't think I have bulging veins, but I don't see myself. I was just going to post about my swallow study I had yesterday and came across this. The pill was stuck in my throat and I did even know it. Kind of sad. : ( I wonder is it has to do with sfpn. I wish you the best of luck and you are going to LOVE it here. Everyone here is WONDERFUL!!!

Rich, I wished everyone had access to the doctors who do this type of biopsies. I know for myself I had to travel into the city and although it is only a day trip, the after effects on my body were so hard. Everything I do my body pays for. I'm sure you and others know what I mean. I consider my lucky to finally have gotten tested...still waiting for the results. I have had another large biopsy on my left arm before I was dxex with POTS that showed mild fiber PN. Also, I had to have to emg muscle testing first to qualify to the biopsy. So, this makes me think you can't just get a biopsy, although I could be wrong. I think right now it seems like to seems to be the trend that more doctors are looking in this direction with those of us of are not getting well, having numbness and tingling in the arms and legs, pain that is unresolved and not understood. I have had terrible pain forever that was just not understood with POTS and I'm finally keeping my fingers crossed that this dx will make sense of all of this for once and for all. Does this make any sense to you? Maybe now that doctors are seeing that sfpn is secondary to POTS it will become in the near future a go to procedure for those who really are not getting better. : ) I look forward to hear what others think... I wish you the best Rich : ) and hope there is a way to have the IVIG covered. Makes me sad to think you come all this way and it's not covered. : (

Hi, I'm really sorry that you are having a difficult time right now. I know it is hard, but try to take it one one day at a time. The doc was telling you what he or she had to. I know they told me that my level was climbing high and I could get cancer. I also have problems with morphine and itch like crazy. My stomach issues are finally being addressed. Every single one of us are FIGHTERS here, so just cancel out any negative thoughts planted by anyone and start to move forward to fight to LIVE! Nothing has been easy so far far, but we have made it! We will be here for you no matter what. All of us who need our trypase levels checked, this is a reminder to follow up with our own doctors. May you stop worrying and waiting till you get your results. Meanwhile we can all pray for you sweet one. Keep us posted. ((((Big Hugs))))

Issie, I think I'm confused sorry : ( I can't find what I was reading on the middle of the night. I never should have said anything before checking the article. Please, forgive me. I hate it when that happens. I thought I saved it and was so sure and now can't confirms facts. Sorry everyone. Got to stop waking up at 3 am and finding a cure.