Kitsakatsa

Okay, am I missing something? (besides a few neuro fibers) What is IVIG? How does this compare with 3% saline infusions? Is it just for headaches?

Neat. Airport security would be hilarious, but can you imagine boarding the plane? The entire plane would have the worst look of fear in their eyes..."oh, please don't sit by me!!" I would worry about getting popped by kids poking me pointedly with their airplane crayons. I can imagine that it would become pretty hostile with the seatbelt and all.

Congratulations! I am glad to hear that there is some offset for you!!!

I just ran across the Merck Manual today. I've been using it for years and find it helpful. Pots is actually in there, which makes me very happy. Here is the link. Its missing some stuff, but otherwise a great summary for those new to the disorder http://www.merck.com/mmpe/sec07/ch069/ch069d.html#CIHDJEBF By the way, "inflatable aviator-type antigravity suits"?! Can you imagine a first date in that?! "Do I look fat in this?" "YES!" "Fantastic, let's go!" K

So sorry to hear of your struggles along with being pregnant- the time when you should be easy on yourself. Sometimes if you are a member of a church, then they can help. I think sometimes you don't even have to be a member. I know that in Utah there is a bishop's storehouse that gives food vouchers to struggling families whether or not they are officially on disability. Sometimes they even pick up utilities and/or rent. I would check to see if your local church has a program. The great part about those is that you can receive when you need it, then give back at a better time in your life. Also, I wonder if your state has any outreach programs that can help with burdensome things like if your heater goes out etc. I can certainly empathize. Right now I can just pay the min on bills, then I have to charge those cards back to their penny. My new hobby is couponing. Have you tried this? It makes me feel so much better about everything because I feel a little like I'm back in control. Basically, you wait for the item to go on sale, then layer as many coupons that you can and the item ends up being very, very cheap! We are talking tortilla chips for 25 cents a bag, Salsa for 35 cents etc. It totally works and the store is all the better because the manufacturer reimburses the store the coupon amounts plus a handling fee. The website that can explain this is www.pinchingyourpennies.com and http://pinchingyourpennies.com/coupons/sto...ons_Mar28_Apr03 can give you idea of how layer can work. Anyway, this is what has helped me. I have been able to build a food storage so that when I have to buy the spendy Provigil RX, I can rely on my storage to get me to the next paycheck. I'm your sister in scrimping! Kits

I'm on pill. I asked about patch and was told that it would make me way too drowsy during the day (the pill is like anesthesia for me). Is this true? Are you guys drowsy on the patch? Holy Crud is right! A corpse? I would wig. Yeah, the hallucinations are pretty trippy. I just think there are probably people who would pay good money for this drug! It is so scary at the time and then the next morning, I feel so dumb for being so scared of Clifford the Big Red Dog materializing out of the drapery:) I get a big shot of adrenaline when I see these things and the fight/flight response. It happens nearly every night and it is hard to go back to sleep- so I like the idea of maybe starting the drug earlier or even patch. How often do you change your patches?

Hi! Don't give up hope!!! I started miserable at working 3 hours a day and in the beginning- it is all baby steps. I thought it was interesting what you said about you thought that the hospital stay would "fix" you. Same here. I had a long 16 day stay and when I went back to work at a hospital, I just wanted to kick the patients out of their beds so that I could have them! I just wanted to be fixed. I also wanted general anesthesia for 1 year increments. Obviously, neither of my plans worked. I guess it is all part of coping with a chronic and very distressing illness. I hope you find comfort in this forum.... Kits

Amen! I work a ton of hours each week and now I have to go back to school because I can't afford the gigantic student loan payment. Even if there was a "working disabled" program that would help me delay student loan payments would be a blessing from heaven. It's not like we can just work second jobs like other people. I don't even have kids, I can't imagine the stress that you feel. I'm not one to feel that the gov't should solve all problems, but there should be something like this. Something to encourage people to keep working...

I'm on clonidine at night and I've been having some slightly (at the time) distressing symptoms. The thing is, I'm not sure whether to tell my physician because I'm afraid he will D/C the Clonidine. The drug slightly reduces my AM nausea and after 3.5 years, that is a something that is priceless. During the day, I'm bound and determine to hang on to the drug, but I get a little nervous to take it as night draws near. I have the re-occuring dream that someone is giving me a hand transplant. On this drug, I have hallucinations nearly every night, but during this dream I wake up to hallucinations and severe pain in my hands and arms. They feel like they are vibrating, like they have machinery in them. I sometimes hear things and sometimes there is a wierd taste in my mouth. For the last several times, I've been completely awake. I even tried to get out of bed last time and felt sooo sick. I happened to be at my parent's house and even when I was sitting with them, my arms and hands were painful and tingly. It sounds pretty wierd, but I just can't face the nausea increasing if this drug is d/c'd. I will do nearly anything to keep that misery from coming back. Has anyone had these experiences? What did your physician ultimately recommend? Kitsa

Some will indeed make you feel much worse. I'm evaluating drug #5 now. So far it has worked (Avian), but then I'm not feeling as well as when I wasn't on anything. I take it because pain medication is not a good mix with pots, but it is a no-win situation as far as I'm concerned.

No K+ problems. I think, at least that has always been charlie horses in the calves when it is too low-nothing like that. When I first pop up- that's the pots stuff that takes over. This is just while working around the house/walking at work that I'll be tripping all day and then just lose power of my muscles. I feel a little goofy trying to explain it. I was just hoping that if it happened to someone else and they found the reason, that maybe it could help me stay room-mate free (priceless!!!)

I would like to ask if anyone here has had problems with muscle weakness and falling. I had a big fall a few months ago assoc with memory loss, a headache and several wierd and bad bruises. I was seen in the ER, but had a negative CT. Since then, I've been tripping over my feet and have nice experiences with not quite clearing the walls etc (impressive @ work!). Then, last week I had another fall where it wasn't really the pots lightheaded symptoms, but more of that I had sudden muscle loss in my legs. I had been feeling really weak that day and then all of a sudden, I had nothing to my legs. I tumbled down stairs, smacked my head and broke my Talus (foot). Has anyone had these types of experiences? What did you find as the culprit? Were you/are you on Mestinon? We've stopped the Mestinon since this fall- but I seem to be just as clumsy. I want to avoid another fall. I live alone with a 3 story house and if I fall again, my mother is going to have a grand mal meltdown! Does anyone have any ideas/experiences? I have quite a bit (20 years) of ballet training, so my positioning and movement has always been more controlled than most people's- this is a radical change for me. Kits

I have a port. I love it. I had a Picc twice- but the adhesives in the dressings were burning my skin and down into tissue. The port is wonderful. I was sore for about a month and every once in a while I have a sharp pain, but other than that it has been a dream. I was concerned about pots+general anes, so I had it done in Interventional Radiology and under Versed. My experience was very good. I am so glad that I have it. It is a world better than the picc line!!

How well do you trust your co-workers? Information about medical conditions can be easily used to manipulate situations and wreck the patient's work life. That is why medical information is heavily regulated and protected. I guard mine until I know people quite well. Even then I've found regret for my disclosure.

Mayo Clin Proc. 2007 Mar;82(3):308-13. Postural orthostatic tachycardia syndrome: the Mayo clinic experience.Thieben MJ, Sandroni P, Sletten DM, Benrud-Larson LM, Fealey RD, Vernino S, Lennon VA, Shen WK, Low PA. Autonomic Disorders Center, Department of Neurology, Mayo Clinic College of Medicine, Rochester, Minn 55905, USA. This article reveals that some of the cardinal symptoms that we all thought were assoc with POTS is not necessarily there in 100% of the patients. It is an interesting retrospective look at a proband of patients that worked their way through Mayo. Some information is merely scientifically verified, but some appears to be new information and providing greater understanding of the mechanism and recumbant effects of POTS. There is a paragraph in there about a theory of hypovolemic patients with capilary leakage having renal denervation. Has anyone read this? What are your thoughts? Can anyone clinical tell us the mechanism (cause) of renal denervation? Its proposed in this article as being a possible cause of POTS. What is the pill for this? Is there a line? K

Oh he-l-l-o! I've been having a torrid affair with exercise for two years. We get together and break up constantly- always driving me to sniffle to my friends as if they are wierd exercise brain therapists and then I head for the ice cream. Then exercise finds me in a crowd and we start up again. It was getting so bad at one point that two of my doctors said "oh.just.stop!" For doctors to tell you to not exercise- that is pretty bad. The thing is- I am overweight and for all of my 20s and early 30s I was going to school, working 2+ jobs and burning the candle at both ends. Now that I realize how I've beat up my body by not exercising I want to burn it all off. One sore point is when I say that I have chronic nausea and I get the once over as if that person is thinking that I must be kidding if I have this weight on me. (the BRAT diet is NOT slimming!) So, in order to break the cycle of binge exercising and then the inevitable misery and flat in bed day- I've tried building up gradually. It is really hard. Dr. Low suggested that I just do 5 min a day for a month and then increase etc. I think that has, by far, been the most helpful. He also said to stay away from arm work and just do leg strengthing stuff. (he didn't use the word "stuff" though). I have stretchy bands. Maybe this would help. I'm by no means an expert, but this has worked for me so far. I'm up to intermittent 40 min/day and have been out of the IV center for a month.

Mine is very helpful. If the number gets too low then I intervene fast before I need IV. My numbers are wierd though. I am way too fluid logged @ 40 and try and stay between 30-35. The magic number is in how you feel. I found it helpful to keep a log for a few weeks and find when you are feeling better and stay within those numbers.

I live the Provigil dream every day. I take 100 mg (half pill- just due to cost) and I love it. I tried to not take it on weekends as sort of a stimulant holiday- but went back because the difference was so profound. It has made a huge difference in my ability to work. For me- it has been a great drug!

I'm 0.4 qd- no K supplements, never a problem with bloodwork. However, I drink slimfast for the vitamin distribution and eat at least 2 bananas a day because they are like candy to my brain. So, maybe that's why.

I cannot live without my 0.4 mg/day. I thought that it treated adrenal problems. My doct thinks I'm a closet Addisons and he said that sometimes they prescribe 1.0/day. So, really, I didn't think my dose was that high- but are you guys finding it helpful at a lower level?

She is not alone and she should know that there are alot of resources and alot of support here for her. She should also know that many members of this forum have performed extraordinary things even though they have POTS. They inspire me everyday and I hope that she will find inspiration here as well. Coming out on the other side of diagnosis is tricky because you feel at times that your life is over. She should know that, and I think that I speak for many, there are good sunny days ahead of her and working for those days is so worth doing.

Yes, we are one big family: The Purple People. I think its true that most of us don't see this on a regular basis because we would either have medical stockings on or be on the floor at that point. It is quite comical for me, because when I was really sick and undiagnosed I saw my purple legs peeking out from under my capri pants* and thought "oh great! not only am I trying to get ready for this thing being nauseated and dizzy, but now my legs are blotchy and I'm such a disaster package!" Well, nothings changed but at least I know that I'm not in control of my legs! *don't laugh, this was 2003 when they were all the rage and I looked FIERCE in them.

While we are on the subject: Has anyone else found that since having pots that the warning time has gone from 20 minutes to 2 seconds? Its not incontinence, it is that the brain signals are just not there until it is time to really run! I have to wear depends, for heaven's sake! Cardiactec: that was a great explanation! Thank you so much!!

Yes! I feel great while exercising. Then I die for 3 days afterwards.

Seriously. My RX says PRN and lasts for 1 year. I go to the hospital IV center. This is better than the ER. They will give you an IV, or access your port. I have a port-a-cath. I carry a copy of the RX with me in case I need to go to a different hospital due to travel etc. It speeds things up even if it is across state lines. I am also set up with the same RX, different copy (ask your doc for 2) with home health. Your ins will tell you which company to use. They will give you the saline, supplies and pole. The poles are usually 1 pt disposables, but they get the job done and cost around $100. You keep this pole. In order to do it at home, you need a picc line or a midline. I had no success with a midline and good success with a picc. This is a POTS blessing. Piccs are fabulous. This is great because you can relax in your own home and feel better. IV centers tend to fill up- so they are sometimes hard to get into when you really need fluids and they are full of people who can make you sick. I would highly recommend home IV. In my experience, it has saved me. It got me through my MBA- there was no way that I could have the stamina without the extra help!! Kits