Kitsakatsa

Hey! Let's start a rave club! It would look like a normal night club, but then we would have a hidden room with IV towers, 3% NS- ya know the hard stuff. Everyone could come and get all tanked up on saline: bring some share some. We could even make saline brownies...

My docs did initially, but they haven't in years. In fact, some of my lab work is really wacky and they don't followup or do anything to correct it. Once I asked my IMD why and basically said that for me this is normal. They know of the problems, and medicate around them, but don't need to necessarily follow every step as they would with an undiagnosed or new patient. This made sense to me. Also, he said that he doesn't explain everything anymore, because he feels that as expert on POTS as he is and he trusts that I will ask if there is anything confusing and said that we've been on the same page for a long time. This made me feel great. If I were feeling ill though, I would have been full of anxiety about it. I think it would be a nice conversation to have with your doctor about expectations and his motivations behind what he is having you do or not do. Sometimes I get caught up in thinking that I'm being brushed off, but then when I say something about it- it always ends up that my doc is smarter than I'm giving him credit for. At least, this has been my experience. Maybe your doc is the same way...?

This encyclopedia site has tons of duh things. This does not surprise me. I don't like it. I've had to withstand enough doctors laughing in my face because they think "POTS" is a funny term, now the thought of that being made worse is hard for me to swallow. Well, on the bright side- maybe now our story will reach some major talk shows...it all depends on the attitude of this man. He can either make it better for us, or worse.

Salt is not my thing so: Cottage Cheese. It has a ton of sodium and with the fat-free version- healthy!! This is the thing that helps me. Oh, and the soup recipes from Gourmet and Epicurious. If they have broth- they are high. Love IT!!

I'm overweight. I wish that I was lanky thin. It would make it easier, because I wouldn't kill myself with exercise constantly. I have horrible intollerance to exercise, meaning that all is good and fine when I'm exercising, but then the next AM, I will have no BP and POTS symptoms all over the place. I guess this isn't the WHINING forum, so I'll stop now. What an interesting Poll!!

I guess I need to clarify...He thinks that it might be a reason for POTS, like a deficiency that would lead to nerve misconnections and therefore the POTS symptoms. So, the Adrenal gland is overproducing Aldosterone and that results in the symptoms that lead to the disorder over time. I have low levels even with 3% and I'm wondering if other have had the same experience.

I have some questions for everyone about our favorite element: Sodium! My Neuro has a theory that the POTS origin has more to do with the body's inability to assimilate Sodium than nerve damage. Interesting...

My mother has been sick with one thing or another my whole life. She works way to hard (as it sounds you do) and I remember being worried about her in much the same way, as you describe, when I was a child. While it is true that I should not have needed to worry about that, or stay up nights with her, the experience tempered me into possessing qualities I can only describe as gifts. You see, while it added a level of worry to my little mind; it also added compassion. After all, it was the way that my mother handled the illnesses with grace and responsiblity that evened out the tide of concern that I had for her. I'm sure that you've had an open discussion with your little one so that there isn't a scary mystery about your illness. My mother had us do fun things together when she felt well and she was quick to laugh about her ailments. Because of the way that she handled it, I don't feel dented in a bit. We have a great relationship and I've learned, from her, to have the strength to face POTS. I don't know if you are worried about your daughter, but you should know from someone who was very much in the same position that I feel these early experiences have made me a stronger adult. Hugs, Kits

I was on depo for 8 years and loved it. Then the onset of POTS began. My doctors and I have been having the debate about whether depot actually caused POTS. Two say yes, two say no. I've been prohibitted by all to go back on it, but I have endometriosis with severe cramps; so I've pursued some therapy. I tried progesterone in the pill form for 3 days and had miserable POTS. I'm currently on Ovral and it stops menstruation just like depo, is a pill that can be stopped, and so far has worked beautifully with POTS and my other meds. It is a dream and its like being on depo again. You may want to talk with your doc about considering this. I don't take the placebos and like you- don't want to pursue a hyster. Best of Lucky, Ducky!

John: I'm echoing what others have said here. I went from a little sick to bedridden and then slowly better. I know that each patient is different and even though we have similar trials; everyone is different. However, if it helps to know. I went from unable to perform a task for more than 20 seconds and unable to watch TV, have any noise around me whatsoever, and unable to be in a sitting position to leading a somewhat normal life with the right modifications and conservatism. My prayer for you is that you will also progress as many of us have. It was just a little improvement month by month. Everything is in baby steps. Hang in there. Life was pretty grim to me then, but it is so much worth it now. My wish is that you will get there sooner than later. Kits

I was dx with Pots with Gastroparesis as a result. Dr. Low @ Mayo said that I also have Chronic Fatigue. I don't really buy that. I think, in my case, this is just what happens when a POTS patient gets too tired. I work full time and have a University teaching position @ night. I don't have the rash and fevers assoc with CF- so sometimes MDs attempt to bundle these, but for me: I'm just POTS girl needing some quality recliner time!

It sounds hocus pocus. If you had "toxins", wouldn't you have a fever? Anytime anyone says the T word to me, I run the other direction. If you think he knows his stuff, ask him to tell you what POTS stands for, etc. He can't know a cure if he doesn't know what it is. I would quiz him. You will be able to tell soon enough. He should not have to look at any notes while answering you. In my opinion, some holistic healers are like fortune tellers; they will take the information you give them and turn it into what will make the pills sell!

It is very logical- POTS is extremely rare. Undiagnosed or not. If this was not rare, then the whole world would shut down. I cannot believe that thousands of people per state have this. If that were the case, there would be tons of people in the ERs with the same 3 complaints, a massive run on nausea meds and a bunch of people fainting at every store while waiting in line. I think Orthostatic Intolerance is not rare and most older people have that. When I hear that POTS is not rare, I believe that they are mixing up OI with POTS. Do you really, really believe that the world could operate at the pace that it does if POTS was anything but rare? Common medical training is not centered around what is pretty, it is what is common and what is demanding. If lots of people felt the way that we did, it would be everywhere in medical literature.

Thank you for your help. The AM after I posted this, the pain was so bad that it would completely take my breath away and it became constant. I visited with interventional radiology (coincidently, I work in the OR) and they said that it was abnormal, but didn't want to go in after it. We are giving it a bit of time. I've taken the next 2 off work + the weekend. I accidently leaned too far back in the recliner in the middle of the night and woke up screaming. We will see how it goes.

Could you please share your port-a-cath experiences with me? I just received one on Friday and I'm still so sore. When I bend over I nearly die. I've learned to apply pressure over it when I bend, but I swear that the thing has spikes on it. I had a picc line, but had a severe allergy to the dressing adhesives. That site is still raw and throbbing and now I feel like my whole body is rejecting foreign material of any matter!! I haven't been able to take any time off and if I'm not better in the next day or so, I think I'm going to need to shut down the demands and take some time. But, I wanted to know if other people had the same experience and how long it took before they could sleep in any normal position etc. I tried taking percocet, but I was fainting in 3 seconds instead of the usual 30. So now just Advil. I can see the chest bruising, but why is this thing so painful? I feel like I'm going to just burst into tears at the drop of a hat!

Last year's reaction was so bad that I was teary fearful of losing my job and I had a whole bank full of FMLA leave. It was that bad. I was so weak that it was even difficult to stand up from my office chair and it lasted well over a month. The doctor had me squat in his office and my heart rate was tachy forever after, even sitting. He said that the heart cannot compensate even for the squat. The flu shot was the only thing we could think of. I will never get one again. I would weigh the decision carefully. I wish they had more research in this area.

I get Zofran IM/IV. It is much much better than the pills and it works faster. CHECK ON YOUR HOME HEALTH BENEFITS! Mine is through home health because it goes in my picc line. Therefore, it is expensive- but after the max out of pocket it is free!! If you don't have a picc- it may be worth it to get one just for the drugs!! Also, I had my doc write for NS, so I can give myself fluid. At one point, I even got vitamins in the NS. I highly recommend discussing the benefits and risks of a picc with your physician if you decide to go this route. It is not for everyone. For me- it is better than nausea. I can inject it and Bam! You also might be able to get it under that benefit without a picc. It is injectable right into the top of your thigh or shoulder. They can give you 25 fr (diabetic) needles. If it is not covered- I would appeal, appeal, appeal. They may say its too expensive, but they get a write off and a discount and after all of that- they really don't pay too much. Have you tried Marinol? It made me dizzy, but took the horrible edge off of the nausea and has built-in munchie drivers if you are worried about getting your nutrients! (Marajuana base) Anyway, get away from the Zofran pills. They are expensive and don't work as well.

When you can never catch your employees goofing around because the swish of your medical hose gives you away. When you feng shui in your living room means that the IV pole balances out the TV and the Recliners are aligned with the huge stack of magazines. When your family refers to the office in your home as "the clinic" When you re-live ideas from frat boys stacking beer cans- only you can do it with Zofran bottles When you seriously considering tatooing "GlaxoSmithKline" on your bottom. Because you love them. And want to marry them. When you start calling it "Possts" after a long day When McDonald's gives you a punch card for fries When "first star on the right, and straight on 'till morning" sounds like the directions for everything!

Same with me. My neurologist wrote Dr. Low and that is how I got in. Its important that your PCP documents your case very carefully and thoroughly. Request your records first. Then, if they are not clear enough, have your doc write a letter directly to whomever you would like to see. If you call Neurology, they will tell you an address to send your records. You can stuff them in a Priority Mail Flat Rate Box for $8.00 and they are there in 2 days. They will review your records, like the previous post. I super-organized mine so they could flip through (tabs, table of contents, chronology, list of meds, list of meds tried and why they failed etc.) Then you wait. Seriously, you might consider your choices with your insurance. Mayo will balance bill you for anything your insurance does not cover and they rarely (ever?) write anything off. Expect that. I can tell you the amounts that they charge in both Scottsdale and Rochester if you want. Just send me a note. Good Luck!

No real side effects to the Provigil. If I take 200 mg some days, I think my nausea increases. I start with 100mg @ 6, and it will wake me in one hour- just in time for work. I take the next @ noon and it will carry me through until about 10 pm before it drops me. Just enough to get everything done. I still feel foggy at times, but I have moments when I feel a clear breakthough (isn't it wierd?) and when that happens, I do all of my hard tasks at work that require clear decision-making. In the afternoon, I drink coffee. I'm convinced that without the two, I would have come close to making unwise decisions at work on some of my projects. Its a little pricey, but for me it pays for itself. Good luck.

Have had Endometriosis since 16. Have had POTS since 32. I don't think they are connected. It is heck living with both though. Did someone say Endo has no symptoms? Oh if that only were the case! I'm still trying to find effective pain relief that plays nice with POTS and POTS meds. If anyone has found anything, I would sure love to know!

HELLO! All the time! I get 3% IV solution and the hypertonic solution is beginning to eat away at my veins (so I've been told). At the beginning of POTS, my veins lasted the 72 hour life of the IV site. Now, I'm lucky to stretch 24. Apparently, lots of fluid over a long time will do this. It happens with blood draws too- those are the worst. Also, because I've been stuck so many times (I have actual track marks from my hospital stays), someone told me that my veins are moving deeper and pointed out the increase of spider veins on the surface. So, maybe it is from all the fluid. Have you had tons? Do yours move around when they try to stick them? Baaaa! So not fun!

Provigil + Coffee. My brain begins to make new connections when I get that combination going. (then, they go away by the time I'm searching the grocery store for dinner, which is why I have 2,000 candles that I don't need).

I see an internal med doc and a neurologist. I'm mad at the internal med doc today. Whenever I call, he seems to come back with the wierdest of answers. I just started a birthcontrol pill, but stopped it because of shortness of breath and increased dizziness. The RX leaflet SAYS to call if you have those symptoms. His answer was " oh, okay- here is another BC pill, if you want to try this one...!!!" Yeah! let's ADD to the scary symptoms!! So- I say thank heavens for my Neurologist. Sometimes general docs can be so strango!! I would get a specialist if you can- and- I would not put up with the attitude that your doctor seems to have. I'm just glad I have my go-to guy!!

First of all, I'm so sorry. You have been through alot recently. I wish the best things for you and hope that you will begin to find some things easier. Heaven knows, it has to get easier sometime right? Are you sure its not Minnesota? If it is the one in Rochester, there is an airport right in Rochester. If this is the one, maybe it would be better for your health to fly. (although now.. with all the complications...I can't imagine the airports have gotten pots-friendlier!!) The two times that I've been to Mayo, it is a bit of a scramble. Your main MD or your intake MD will give you a referral to GI (for example) and they will make the appt for you. They will give you the next up, but sometimes it is a week or two away. Alot of people plan on camping out in a hotel near Mayo for at least a week and several if you can afford it. Most Hotels central to Mayo have complimentary shuttles. If you are poor, like me, when you get the appt two weeks away, you can scramble. You do this by going to the GI wing and let reception know that you need an appt sooner. Sometimes, when they have cancellations, they will take whomever is waiting in the waiting room. I sat in the waiting room for 3 days to get my appt. Don't let this scare you, Mayo clinics have "quiet rooms" with recliners and dimmed lighting. You can be there and have a family member sit in the waiting room to hold your place. Mayo knows that most of their patients are miserable and they will work with you. I highly recommend Mayo. If you can manage it, it is an incredible place to go. Good luck to you. It sounds like you are ready for what Mayo can offer.