Kitsakatsa

Has your thyroid been checked?

Has your B12 level been checked?

Kits

....WOW!....

Provigil can increase nausea and that can decrease appetite. I switched recently from Provigil to Add and found my nausea decreased.

For an increase in appetite, my doc used Marinol. Believe me, it works. It has to be approved on the basis of nutrition (sometimes used for anorexia) or nausea and it is controlled (marijuana).

HAAA! HAPPY POTS! I think you should sue them. It sounds like a chinese dish: I'll have the #45, Happy Lucky Pots, please with a Diet Coke.

I just know what Dr. Low told me. I have non-viral but unknown cause POTS. He said that most rapid improvement is seen within the 3-5 year range. He said they thought that they were seeing that everyone was recovered at year 5, but soon realized that the patients they were following had simply just periods of remission and then symptomatic periods again.

I have had POTS for 5 years with the big bang anniversary Dec 27th. I am and have always been symptomatic everyday. I think sometimes I am psycho and I probably am. I have to talk myself through every daily task, even now. I think my period for improvement is over and I am left with the way I am feeling now for ever and ever.

I am exhausted most of the time and nauseated all of the time. I have a deep envy for stay at home moms and I struggle with my feelings to trip them in Target, where they all seem to congregate. I probably will never have children and never be able to stay home. All of these things seem very unfair.

But,

I made gingerbread cookies tonight and it was hard, but I did it. I stood too long and they turned out just perfect. I may not recover or have the life that I want, but who can ever say they are so proud of themselves for pounding out a tribe of gingerbreads? Our bodies may not be perfect, our lives may be far from perfect, but there are simply perfect moments that we can all be proud of because we are up to bat, and we are trying.

My friend's husband is a Radiologist and thought I had POTTS (TB of the spine) instead. He told her not to let me in the house.

I hate the word POTS because it is too close to Potty. We jokingly call it POSSTS because that's what end up calling it everytime I'm sick and not thinking.

When the doctor first told me I had POTS, I said "ok, whatever, but why am I so sick". It didn't sound like any kind of serious illness and I thought it was something he made up. So, I never say the acronym. I say the whole phrase and then people blink and say "what?" and then I have an opportunity to explain more about it. I don't want people to think I have POCKS.

Kits

I have a very good article about POTS and decreased heart volume that explains why exercise is so hard for us. It is like asking a heart failure patient to exercise.

I've offered it before, about a year ago, but if anyone would like a copy- email me at carrie.jacobs@imail.org and I will email it back to you. Put Pots in the subject line, so I don't think you are a spammer.

The article made me feel better, and gave me the patience to take smaller steps. Incidently, I'm starting all. over. again.

Kits

Medical Transcription agencies?

I'm in med field, and I picked up that so many had onset of symptoms while working in med- arts and med, two areas where people are constantly on their feet. This may sound just completely off the wall, but my physician and I had wondered if there is a strong kidney/vagus nerve correlation. There is a salt balance here and the kidney speaks directly to Vagus, hypothalamus and adrenal areas through the Vagus. We had read some studies and there was a seminar that he attended that suggested that dysautonomia is a kidney disease. All of this came up at the same time (spooky), but then didn't lead anywhere after that.

When you say artists, I wonder about tie- ins with profession and kidney function. I don't know what the connection would be except that these are all people that run through their lives completely dehydrated, only have the opportunity to void every 10 hours and probably don't have the best nutritional habits.

B12 is also linked to nervous system damage. I wonder how many of us were B12 deficient years before POTS (the liver stores years of B12, so it doesn't show up immediately). Anyway, I was a theatre major before I got into med so I can see where you are coming from. Thats when my MD said that my B12 synthesis was messed up. Wierd. Maybe too many overnighters with the stage paint!

Kits

FASHION! Oh, when will Runway Project feature our lovely medical hose?!

The hose were a big change. I like capris too. Sometimes I take a hose holiday and just wear what I want. They really do help though- esp when its hot outside, which is wierd, because they made you hotter. Anyway, the best thing I've found for the hose are to wear men's bike shorts (tight ones) for or over undies. Then, the hose material doesn't take off your skin because it is so coarse. Plus, these shorts are soooo comfy to sleep in!

The Spanx stuff is expensive, runs, and doesn't seem to work so well. If it makes you feel better- I actually dyed a pair of my hose with rit dye and it worked out really well. Now, I have brown and blacks to match my outfits. After a while, you'll build up a collection and these are easy ways to make it look like you are not wearing medical hose.

Kits

Wow! What a find! Maybe that way, someone could even figure out when to start moving and that they have been standing too long. I always loose my mind at Target because I stand too much! This would be a great way to keep from getting in trouble!

Oh my gosh. These are such good suggestions. They make me think about even starting a prayer or gratitude journal. Every day is just so hard because of POTS that sometimes even a little more struggle is just too much. Maybe I can even take it to work and read through it when I just get so pounded. That will help me think about the blessings. I get to spend tomorrow with my parents. I'm going to do crafts with my Mum. I'm going to just soak it all in.

Hopefully, I can go back Monday all composed, well rested and my hair even curled (no sleep=chronic ponytail)!

Thank you for helping me through this!

Kits

I am just wondering if anyone has found a way to disengage from work and relax. I work in a hospital and I have been given a hard project. I have 2 new bosses, 1 that I have to train. In the meantime, there are two departments that I work with on a weekly basis. In one department, an old employee of mine (who totally took advantage of my illness by not working and basically messing around) and her boss who as determined me as her competition. In another department, a total idiot kid who got his Director job because of who is Dad is in the company. The problem is, I am professionally attacked by those three almost daily. It sounds paranoid, but all three have banded together to destroy me. My two bosses are at my defense, the head of the corporate program is trying to take down the one department and even the administrator of the hospital has witnessed the attacks and has said that it must stop happening immediately. I have all the support I need, but I am so stressed out that I have been up all night for ages and now feeling extremely sick and weak. I feel like just giving up. It is so hard to work full time and be sick and nauseated all the time and then have to put up with such harassment and incompetance. See, the way they are getting me is that they don't do their jobs, so I have to make up for it. Then if I make a mistake (because I'm so slammed with work), they jump on it. They jump on my employees too. One has OI, and is having stress problems as well.

I need to not let this bother me so much, but it haunts me day and night that I haven't done enough or been good enough or that my dear employee will make a mistake and they will just rip us apart. They are not my supervisors, but they seem to make a federal case over everything.

I don't know what to do.

Kits

Sara,

I too work in the medical field. I wanted to read your post slowly to make it last longer because it really does speak to me. If I try and advance my career, I may lose it all together and I may have to commute to a hospital that doesn't have my doc and everything all set up for me (+ commute!). I can see higher jobs that I could really do well at PRE POTS. How would it all work out now?

Thank you for the affirmation that health has to come first. It is true. I have gained some gifts from being sick that I otherwise wouldn't have had. Patience for one thing! It really is a challenge to turn off the thing in my brain that makes me want to go after more.

One ingredient of a good story is life experience. I hope that you do become published and that all adversity will be a pathway for you to create what you're after. Let me know when I can buy your book!

Kits

I don't know if there is anyone with some advice? I work in a Management job, and today I had a discussion with my Director about how I want more opportunities for growth and how I feel that I'm being held back. I've worked very hard for my degrees that these are the things that my brain wants. At the same time, I am about to fall over and pass out. My main symptom is nausea and today, it is out of control. My Director has been very understanding about my illness and very supportive, but I feel that even though I fight through the illness, it has held me back. Does anyone else feel that they are split between wanting to achieve more in life or work, but can't get over the fact that rolling into a ball under their desk is a compelling plan?

Half of me feels like I should be on disability. Half of me feels like I want to be very competitive in the career ladder.

How can I be happy either way?

Kits

Coffee.

I think that Florinef is so wonderful (I can feel myself transform 1.5 hours after I take it) that I treat the fuzziness gladly.

You can try coffee. There is something about it that is unique and unlike any other drug I've tried (it is- in my mind- a drug).

Provigil helps.

I wouldn't give up on Florinef until you give it a good try. From what I understand, it takes 21 days of a dosage to show you the full benefit.

Kits

I've seen a POTS article that suggests working up to 20 min per day a few days a week. I think that is reasonable. Whatever you can do that will no invoke THE REACTION. You all know about the sleeping monster that I'm talking about. We don't want to wake him. I used to exercise on purpose 1 hour each Friday night just to invoke that. I would sleep all day Saturday. I thought that pushing my body was a way of healing it. Wrong. Baby steps are the key. Starting at 1 hour would be foolish because it would take you a week to get back in the gym. Better to have 10-20 min per day.

It made me want to bite people.

Happened out of the blue for 2 weeks 3 and a half years ago. I've not experienced anything like it since. We tried to pin it down, but could never figure out the driver behind the wellness.

I am on intermittent FMLA, so I don't wait until I have a bad time, it is an umbrella that will cover me any time from 1 to 90 days per year. I renew every year. It helps me enforce the sick policy as a Manager and it helps me calm down and not panic on my sick days.

I take the Thermotabs too.

You have to get a pill crusher and grid them up and then dump them into pudding. I've never been able to keep them down whole, have never thrown them up when they are crushed in pudding. They totally ruin the pudding, but I've been able to take 3 tabs in one little Jello cup- which is great (banana works well).

You can usually get pill crushers in the pill container area. They are inexpensive- more money for lemonheads!

I work a very demanding full time job, but I think that a couple of tweaks have made it bearable...

I filed intermittent FMLA with up to 6 days off per month. I don't take more than a day or so off per month though. My MD also wrote for flexibility to work half days when needed. Just knowing that it is all written gives me great emotional help to get through the day. I also have my doctor on site, since I work in a hospital. I know I have it VERY good. I guess the biggest help is living within minutes of work. If I have to go home and lie down at lunch- I can. I highly recommend living close to work. Also, I have a handicap pass. I explain to my co-workers that I can only take a certain amount of steps per day. Without any of these, I would not be able to do so well.

Kits

Are you on Midodrine or Niacin? I've noticed them since being on the two. Tingles are a side dish of those and they seem to occur randomly as well.

Otherwise, maybe it is your body's inability to regulate the skin to the environment that you are in. This is a pots issue as well.

Kits

Welcome, Nausea is my middle name and my husband's name (I'm married to nausea, so it seems).

This has been my first and foremost major battle. The things that have worked somewhat for me is compasine and intra-muscular shots of Zofran. The pills are not as effective as the shot. You can self administer it and I take 12mg up to 3 times per day. This at least gives me some relief. I would check on insurance coverage- some cover as a home-health benefit and it is covered without pharmacy co-pay.

Also, when I started taking Clonidine at night, it cleared up my AM nausea in a remarkable way.

I hope this helps!

Kits

I had a misdi of DI purely because of input/output alone. I was malnourished and dehydrated and my MD's first task (I was undiagnosed) was to pump in everything. In which case, everything came out to the exact measure. This has been a problem with retaining sodium. We've noticed that is almost contra to administer IV because I lose my sodium like gang busters. Hypertonic is good short term but has a talent of pulling even more intracellular water extracellular and into output.

My concern is late vision problems with POTS patients. If DI causes these, surely we need to watch out for them. The shuffling of water can damage (possibly?) the small capillaries in the eye similar to diabetes flush?