Kitsakatsa

I need to go on some sort of pill to calm down monthly pain. What works with Pots? Has anyone ever had Lupron? Thanks!

Yes and Yes. Mine correllates with the tides of stress. If I am pushing a deadline, I will have insomnia for weeks at a time. Once the deadline is passed, I can't seem to get enough sleep. There is an article in April's Glamour Magazine (ya, it helps me to be glamourous despite the medical hose) called "Are you a Somnorexic?" that talks about how people miss sleep for whatever reason and then crash. It is an interesting read and a great excuse to go buy a dishy mag! (page 152)

I can also relate and I am horrified by some of the posts that I read here. I've worked in an ER and when I was there they also treated some patients poorly. I eventually left because of the way people were being treated and I couldn't do anything about it. Not all ERs are that way. I have met some wonderful people (usually more staff than docs). This is a tricky syndrome and even people who have known me forever still ask what exactly I have. Just don't ever feel that it is something about you. It is all of us and this whole syndrome. It is about time, stress, workload and the state of medical education. It is our burden to educate and that is very hard when you are very ill.

Milipede!! That made me laugh so hard!!! I think it should be a Giant Saltine Cracker in the color "emasis basin pink". It would have giant ankles from all the salt. But then it should be something that bounces when it falls down and a cracker would just crumble. How about Mr. Pilly?

http://www.nutritiondata.com/index.html Go to "Tools" and "Nutrient Search", Choose "Sodium" I love this website and this feature is nice. Did you know that Cottage Cheese has tons of Sodium?

That is so funny! Arizona Ice Tea. Yeah I think that someone once told me flush out my autonomic system with Arizona Green Tea. Amazing advances in Science Abound! You guys crack me up!!

Has anyone found any kind of pain medication that does not make POTS worse? Percocet is a nightmare. Has anyone been able to get Toradol IM approved? Its one week that turns from **** to double **** and I would love, love, love to know if someone has found something that plays well with POTS. Thanks!

Here's my top ten list (not in a most-appalling-first order) 1. I was told by an aunt that maybe gastric bypass would help cure me. (I'm sure my nausea will be better when I have to take a major pain medication- thanks!) 2. Once an IV nurse came in to check on how I was doing and said "so how are you doing in here? Still a little depressed?" (Ya. That is why I need 3% saline, because I'm depressed and decided to come in here and throw up saltines out of boredom) 3. I was once told by a family member that I got this illness from the kitty litter box (do I spend time there?) 4. A neighbor told me that everything can be cured with a hug and then asked me if I have any friends (ya, I'm going to punch you with 5 of them) 5. A CNA when I was hospitalized said that the only reason my heart rate was 150 standing is because the monitors must scare me when I get close to them (hi, I work here remember?) 6. I was told once by a neighbor that when I have children, it will go away because I won't have as much time to think about myself (yes, I have heard that being single brings this on...) 7. An ER doctor once asked what I had and said that it can't be bad enough to be in an ER because he's never heard of POTS and said that Mestinon must be a placebo because he has never heard of that. (had on a mock-turtleneck- enough said) 8. The whole circle of "why are you in the ER, you should get in touch with your doctor" and "why do you need to be seen? If you are that sick go to the ER!" 9. One cardiac therapist said that he must have POTS too, because he's feeling tired today also. (never went back) 10. My friend's neighbor who is a physical therapist said that Red Bull usually works for these sorts of things because "sometimes all you need is a little incentive to get moving" (oh, I didn't realize that working 50 hours a week, exercising, cooking, cleaning and charity work was not enough!)

There are two major forms of ablation- Hydro Thermablation and Heat Ablation. The first uses hot water to ablate the uterus. It is a good method of treatment for those who have a tilted or abnormally shaped uterus. The second is a wand that is used to manually go around and around the uterus and ablate the tissue using heat. We have used both in our OR and have seen good results. I do not know what the after effects are like for either though. Most of our surgeons use the water ablation. I think that a good first step would be to ask which form your physician uses and research both to see which advantages both have to offer. One place to search would be PubMed...

Is anyone working through both Endometriosis and POTS? What pain medications have you found that work for you? I am going to try and get my 2 doctors to work together, but would like to know of anyone's experiences. The Percocet that I have now does not play nice with the Mestinon! Thanks in advance!

I have worn a pony tail for more than 2 years now!!!! I know exactly what you are saying about having a hard time getting ready. I throw on makeup and then have my pick of a gigantic display of hair clips and bands. I have big plans- but when it comes down to it- I cannot keep my arms up longer than pony tail time. Once I asked my doctor "what are you doing to me!!! You know I am single right!!! First I have to wear medical hose, have the perpetual pony tail, thanks to POTS now, I have glasses- and now big ankles from the salt?! Just buy me some tweed and fig newtons and I'm set!!!" He said "I'll buy you a cat!"

I have to belong to 2 gyms to get those things- machines + pool= $80.00/Mo! I think you have an excellent deal. Consider it therapy!

Yes. it seems wierd. We wear those horrible med stockings to get the blood back into our heads, but then tilt beds to get the blood to the feet! The idea is to train the body during its downtime to pump the blood back up. I noticed a difference about a week after my bed was tilted. This was a suggestion from Dr. Low that I try this before he would even authorize an appointment. It has worked for some and after a few days- you will not even notice a difference. It is also good for digestion- so two birds with one stone!

Provigil. Love it. Want to marry it. It's a stimulant and I've enjoyed lovely blood pressure since being on it (I was the queen of the 70/40s before- now I am 110/80 usually) Good luck. I think there are quite alot of options out there!

I was seen at Mayo by Dr. Low last July and had the same tests. The purple test--- isn't that so hard to get through?!!! My results were all consistant with POTS though (catas up etc) and confirmed that it was just POTS going on. I had the same result with the purple test on my feet and I understand it is common for POTS and neuropathies, although I do not have burning in my feet. I did have, for quite awhile, burning in my left leg. It happened when I started feeling well, but then when POTS found me again it went away.

I've had a hard, hard time with TV or movies. On my worst days- I cannot have anything around me. Even talking in the next room will make me horribly ill. It took me about a year to be able to go to a movie with my family. I still have major problems. Even deep storylines will make me go lay down. It's just something that you have to work with and my family is aware that I can only handle a little bit at a time.

I was diagnosed with "Narcolepsy without Cataplexy" two years prior to onset. Basically because I can see images when in a wakened dream state. I am awake, but having hallucinations because part of my brain is asleep. They would only happen at night as I was trying to sleep though- plenty traumatic (huge spiders, fire and things) but never dangerous.

Astronauts do have POTS. We went to Kennedy Space Center over Christmas and on the tour they showed us the building to which they are transported after they return to earth. The door to the thing is a garage door about 10 feet from the ground. We paid for the expensive tour, so we had an engineer as our guide. He said that the door was high, because the astronauts cannot sit up when they return to earth and the door is so that they can be wheeled on the gurney directly into the medical building. He said they cannot sit up because of severe syncope and an inability to maintain blood pressure and a tendancy towards tachycardia. He then said that after a few days of therapy, they are ready for earth's gravity again. Let me tell you folks. I felt very twisted up inside. I think they know. I know they know. That building holds the keys that we are all searching for. Maybe they can only fix ones who have short term POTS, but they know something about something. I still feel like my heart is in my shoes and I don't know how to think or feel.

Hi. My name is Nausea. I was born under the sign of Nausea. I have injectible Zofran. Every few hours in the thigh. I don't even feel the injections anymore and they are way way way worth it. I could not work without these. They are holy expensive but my ins plan covers them under home health and so instead of $5,000/ mo they are free. I'm hoarding them in case they are ever pulled off the market. I'm going to name my first child GlaxoSmithKlein.

I would think that he would much rather write for the chair than take care of a inpatient for a week hospitalized from a head bang. I would think it would be cheaper for the ins to do this also. You can tell him that it is all about weighing the benefits with the risks and that you feel that he should support you in your quest to actively try to improve your quality of life. It is afterall YOUR LIFE! I think the fight is worth it if you believe that you will benefit from it. Good Luck Sis!

I've found .9 helpful, but 3.0 even more helpful. I have a standing order at the IV center. I have an Angel Doctor- that is why. I couldn't keep a full time+ job without fluid help every once in awhile.

I'm not housebound, but have you tried card-making? Similar to scrap-booking but cards instead. I swear, it is the only hobby that I can do for more than 29 seconds. Can't crochet/knit/read/sit/rest/etc. but card making is challenging enough (what the heck do I do with all of these papers and stamps and stuff!) and active enough that it fights boredom away. Also, you can order online. Scrapbook express is a good one. I find "Stampin Up" stuff on ebay. Then, you can either build a monumental collection or give them away and either way you feel good about yourself. I didn't think I would like it- but now I'm convinced that it is the best POTS activity on earth!!

From what I understand, Florinef enters the bloodstream with the normal metabolic timeline and works immediately. I don't know what the half-life is, but I know that I cannot go a day without it without noticing effects or picking up a cold. You can find more information at many sites like webmd.com about drug levels etc. I am florinef Queeeeen! I love my little pillies. I've never had headaches with it. When I have those it is pre-menstrual. You might want to consider the timing before attributing it to the Florinef. I would also check with your doc or pharmacist. It is entirely likely. Hope this helps!

I was diagnosed with POTS at the end of year one of a two year graduate program. Having a Laptop made a huge difference for me because the recliner-position helped me to think. Also, I could zone away on TV for awhile and then work on the paper little by little. If you cannot stick with the paper, don't get frustrated. I felt the same thing in my worst-feeling times. I felt very restless and exhausted at the same time. I played Maj-jong and games like that before I would even attempt to write a paper. It seemed to get my brain working instead of diving straight into the assignment. Also, I found that breaking the paper down into an outline really helped me. I would tell myself that I had to complete a section, then come back later to do another section. This held my panic down to a min. With POTS, it is easy to panic when faced with an assignment. Little by little I got through it. You can too. Don't give up!!

Okay, despite my tagline, I haven't worked out in awhile since it made me so sick. I cannot decide whether to buy a a membership to a gym which offers aqua aerobics classes. The fee is $50/month and there are 3 classes in the evenings per week. This is expensive, but worth it if I can get exercising again. What are your experiences with AA classes? Do they generally make you sick the next day? Does it seem easier than land exercise? Do the waves make you sick (I have nausea)? How about getting out of the water and getting dressed- is that super hard? What has helped? I really need your opinions!