Katybug

My legs don't really feel any different when they pool, just have the color change. BUT, its the rest of me that feels it when it happens...I get dizzy, and brain foggy, and feel like I'm either going to lay down voluntarily or my body will lay down involuntarily, like it or not. I also will get flushing and sweats and my knees will buckle if I try to push myself and don;t lay down.

I had to go off of metoprolol for my second TTT and some other autonomic tests (I was off for 9 days to make sure it wasn't in my system and I I was fine. My heart rate slowly increased over the course of several days but only back to where I was without the drug. (I didn't have a sudden crash or anything.) It did take me about 2 1/2 weeks for the metoprolol to build up enough again once I started back on it to feel the benefit. This was not surprising for me as it took a little over 3 weeks to feel the benefits when I first started the drug. (I also had to stop my Florinef.) I was willing to take the chance of quitting the meds for a few days to get accurate tests and it worked out for the best. Good luck! Katie

Good luck, Sue!!

Hi Michelle, I experienced this when my tick-borne illness was at its worst. I recently had posted a link regarding my limbs going to sleep and it turned into a surprisingly long thread. You may want to take a look at that thread to see what people had to say. I still get it but not nearly as bad. I think I named the post "Limbs falling asleep?" or something close to that. Katie

I get this but not from walking. Mine seems to be related to some mystery allergy I have that I can't figure out. It happened last night in fact so I took pics to show to docs. We are about to begin looking at mast cell issues for me so I figure taking pics will help the docs see what I'm talking about. I have actually started taking pics of anything that I can document that way (wish I had started this 4 yrs ago) so I can show the doctors what I am describing. It has been helpful so far.

Maiysa, Sorry your having a rough time with the doctors. I know that is one of the hardest parts of this disorder...the doctors! I wish I had something to offer you other than moral support. Hang in there... Katie

So I asked the cardiologist today what temp I should consider a fever since my new norm is 97.1. She said..."Good question!" She said she considers a temp of 101 degrees to be of concern in normal, healthy adults, so she feels that if mine (running about 1.5 degrees below the norm) hits 100 degrees, I should be on the phone to one of my docs that understands and is involved with my POTS treatment. She was very honest and said that she has never had the need to even think about this issue with any of her other patients but that it is a valid concern. I'll let you know what the other two say as the appts. happen.

Hi Potsgirl, I haven't been tested at Duke so I can't speak to that. But, if you are feeling apprehensive, you could give them a call and ask if a nurse or assistant can explain what to expect during the testing. I totally understand what your saying about the apprehension. I always imagine way worse than what the tests actually involve. The autonomic testing that I have had has not been bad...maybe a little uncomfortable...but not bad. Good luck to you! Katie

That's the spirit!! I was also thinking about this...I don't know what you do for your employer, but, is there any chance of being able to do some of your work from home? Like computer based items that you can do laying flat on your back on the couch! If this is a possibility, maybe you can talk to your direct supervisor before the meeting (don't want to blind side the guy that's already on your side) and then suggest it at the HR mtg.

I have just a slight color change in my thighs most of the time but there are times when I can see a dramatic change in color and I have had my legs turn so purple that it didn't seem human. I have also had some weird pooling patterns lately where it looks like my thighs are covered in spider veins. I took pics and the POTS doc says it is one of many patterns the blood pooling can make. It was kind of scary the first time I saw it because it looked like something out of a sci-fi movie. I find the color change most noticeable in the shower. I also have abdominal pooling which I experience the same as dani, no color change...just the preggo/bloated look (not my most attractive moments.)

Thanks, Julie. I wish I was 25 again but I'm a little too old for Dr. Rowe anyway. I actually have a POTS specialist who is nationally recognized for his work on POTS and I'm happy with him. Actually, I think he's GREAT! I just figured it's always good to know all of your options.

IDreamInColor - I'm on FLorinef and asked my POTS/neuro if I should get a flu shot this year and he said the same as Julie's son's doc. I had my shot and didn't have any probs. Julie - I am in Baltimore. Is your son's doc at Hopkins just for peds or does he see adults, too? What is his spreciality?

misstraci, When I was taking Lexapro, I didn't have any issues with my usual go to of Robitussin. But, I think derekliz is right to suggest calling your doc cause I have a feeling regular cold meds will likely affect our BP and HR and could make your POTS symptoms worse. Hope both of you feel better soon. Katie

WOW!! Julie, you said everything I was thinking but in a very eloquent way!! I am not better yet, but, I have put together a great medical team and they take getting me better seriously. They were not the first docs I saw, but I kept searching until I found them and it has made all the difference in my dx, tx, and my mental outlook. One thing I have also learned...when you find one really great doc...they usually hang in packs! So, now if I need a new specialist, I only see people that either my cardio or my POTS/Neuro recommend. I ask them, "If you had this and had to see a ______ specialist, who would you go see?" I have had to give up working and training horses which has always been my hobby/second career, and, this part of this whole strange disorder has been really sad for me. But, I have also learned that gifts often come in strange packages, and sometimes, it takes a while to see why we had to go the hard route to get to the good part. My level of conscientiousness and clarity about what is important in life has really been taken to a whole new level by my new limitations. I hope everyone is able to find some thing of value to hold on to and is able to forge a new path in their journey. My thoughts are with all of you, Katie

Hi, I don't have allergies to PJ, but, I haven't been able to use any sort of lotion on my legs (not even prescription lotions/moisturizers) for years. Also, can only use water to shave my legs. If I use any "prepared" products for shaving or moisturizing, I get really bad rashes and foliculitis. I recently took a leap and tried pure avocado oil to moisturize, and, to my delight it works without causing a reaction. I know the Vitamin Shoppe sells pure avocado, almond, or grapeseed oils for moisturizing skin and scalp. It is pure oil so you only need a couple of drops to moisturize your hands and it soaks in in about 3-5 minutes. I have really dry skin and was happy to find a solution. Hope one of these pure oils might work for you. Katie

Todd, Is PENE the same thing as exercise intolerance or is it an actual diagnosed disorder/syndrome in addition to your POTS? Interested in learning what it is and how the medical community dx'es. I can have pretty bad post exercise issues depending on the day and how much exercise I have done. My POTS doc specifically told me on my last appt that he would rather have me only do 10 mins on the recumbent bike if I think that 20 mins will land me in bed that day (or several days). He said its worse to be bed/couch-bound than it is to do a little less exercise on a given day because being in bed deconditions faster than doing less/easier exercise. Katie

I was going to suggest what the others suggested. But, also just want you to know that you're not alone...I feel like I've run a marathon after changing the bed! Also, the stool is one trick. I also like to cook (although I have to be having a really good day to do that anymore), so, I have learned to sit at the kitchen table and do all my prep there and then taking the stool to the stove so I can sit as much as possible during the process. I also try to break these tasks up..for example, I might strip the bed and then go rest for a while before I get sick from it. Then, I go back later to put on clean sheets, I might rest again before I do blankets, and comforter.

Hi Julie, Some days it's really difficult and it feels very hopeless, but, there will be good days and those are what you need to look forward to. Hang in there and take one day at a time...when I have bad flare ups, I even sometimes go one hour at a time. You are not alone. Katie

Good news...Day #1 of NO HEADACHE!!! Yeah!!! Issie - I did look it up on Wikipedia last night after reading your post but I didn't before because I took Depo shots for almost 10 years through my 20's and early 30's with no problem and I had migraines then too (had them before the shots and did not have any increase with the shots). Thanks to everyone for the support and suggestions. I am going to go the Vitamin Shoppe tomorrow to see what they stock in magnesium (had to wait til Mom could drive me). Hopefully this will help prevent future issues.

Great news that you finally have some answers! Congrats! That's better than where things were earlier this week.

Hi Bren, Here's the list I made for someone else the other day...some overlap with yours, some different: MRI and MRA to rule out MS, Parkinson's, aneurism, tumors, other brain and or vascular brain abnormalities Bloodwork to rule in/out autoimmune disease, B12 deficiency, AIDS, celiac, syphillis, tick-borne illness, heavy metal poisoning, thyroid issues, adrenal issues (Cushings/Addisons), ECG (?) to rule out seizure disorders (I think its ECG but they hook electrodes that monitor your brain waves all over your head and do various things like different sounds etc. to see if you have any seizure activity. Easy and painless.) I was sent for sleep studies (nighttime and daytime). After receiving the POTS dx via tilt table test which was run by cardiologist, the POTS specialist ran the following tests specific to dysautonomia: TTT that continuously monitors heart rate and BP (as opposed to standard TTT that takes readings about every 3-5 minutes). Breathing tests to see if different breathing patterns changed my BP or HR. Sweat Test to check for neuropathy. Good luck! Katie

If you click on the arrow next to your user name at the top of this page, it will give you a drop down menu and Personal Messanger will be on eof the options. Click on it and you will be able to message someone privately, very similar to email.

Hmmm. Why have the docs not said that!? I had discussions with them all before I switched back to Depo. I don't think there's an antidote.

I used to get the chest pain after feeling clearly tachy and all the pre-syncope symptoms, simialr to the pattern you used to have. Now, I get the chest pain in no discernible order and no clear pattern. I noticed recently that sometimes I get it first now before I feel anything else. I'm not sure what caused the change but it is definitely my POTS.

This past summer was worse for me than the prior 2. It was much hotter and also more humid here than most years and it made it very difficult. I definitely noticed that it was not just the heat but also the level of humidity that affected me. I could take 80 degrees when it was dry (don't get me wrong, I couldn't go outside and be active but I could go outside and enjoy being with other people for a while), but, if it was 80 degrees and humid, I could barely make it to the car for a docs appt. That being said, I don't think we should assume the worst as this is a disorder that can change over time, and, hopefully by then your docs will have found an effective treatment plan for you.