Kitsakatsa

Is it when you are lying down, or when at first lying down? I feel better lying down, but when I first lay down I feel the most horrible of all and think I am going to die and the only thing I can think is that I am so glad I am now going to die. But, then about 6 minutes later it all washes away and I feel better. The change of position is super-brutal for me. Something happens. When I have been at my ultimate sickest, I cannot stay sitting or laying for more than 20 seconds each at a time. We've found that my BP hovers near zip at these times. Have you taken your Blood Pressure when lying? I wonder if it is too high, too low?

I had one two years ago, and one just a few months ago that showed same. My doc said they had attended a lecture by Mayo GI addressing Gastroparesis that very week (great coincidence) and the lecturer said that they had little success with pacemakers and even meds. Then he said it left off with the ever-frustrating sentance of "clearly we need to do more research in this area". But, I thought it was great that there were active Gastroparesis studies ongoing at Mayo. When I went there last summer, I got a flaky doctor who was so clueless I think he was an impersonator. I was discouraged. But now, I know that at least some work has been done and may continue. Wait- wasn't the whole point of South Beach diet that if things stay in your stomach longer, you will lose weight? How come that's not working for me?! Take Care Everyone, Kits

I read that one... It's great. There are explanations in there that I had never heard before- even from Mayo. It made alot of sense and it finally dawned on me what I was doing wrong that was making me sicker! I was running around like a maniac because of the high epi in my body and then crashing. I even thought "why can't my employees enter data this fast? I can do the job in half the time it takes them!" and I would get really frustrated. Now I understand that I run a level higher and that is part of the dysautonomia. I would highly recommend that book!!!

Oh, okay- thanks! I had a really hard night last night and thought that my apartment was under seige. (I live overlooking an active air force base and they were flying last night). My boss scared me this morning because she said that my eyes and my face were changing every time she glanced at me and that in 1/2 time I looked totally different. I really think I'd better have my blood pressure checked if I'm going to be on this. A dead man though- Wowza! You had it rough! I'm starting to think my pill bottle is really a Jumanji game and flying monkeys will come out any sec. I'll check with my doctor. Thanks for the tip!!!!!

You had hallucinations too? Wow, I wake up in a different mental place every night. I'm afraid that I will sleep walk away. One night I woke up and thought I was in India, the next on a boat, the next in a haunted house etc. It is pretty trippy!

Zofran works the best for me. My MD prescribes it as IM intramuscular injection and my insurance picks it up under home health. Therefore, it is delivered to you with syringes and all the supplies and you get the bill much later. Also, it may qualify as out-of-pocket. Since I've fulfilled the out-of-pocket for the year- the Zofran is free, free, free! This sure beats $25 for 5 pills at the pharmacy. Also- it enters your system much quicker. The injection is no biggie because they give you insulin needles with it. You might want to try this- it has saved my finances. But be careful if you have a ceiling to your coverage. 12 bottles = $5000.00. Hope you feel better soon.

Here's a question: How long did it take you to aclimate to Clonidine? I am having success taking it at night, but if I try and take it in the AM, it is a whole different experience. I cannot navigate doorways (whoa- where did that wall come from? ) and it is like trippin' out on something like Versed. I took it at work, because I didn't want to be alone the first time I took it. Big mistake!! Anyway, the pharmacist said that your body gets used to it and it loses that effect. Did anyone else have this? How long did it take? Its taking away my nausea and I'm just dying to be able to take more!! Luvs

I always take something to help me sleep. I don't think there are many dangers, but I have read many replies on this site that a little bit of pampering goes along way when it comes to air travel. On this last trip, I found that wearing a pair of sleep eye things really helped to cut down on nausea associated with light, noise, motion etc. Plus, you should never attempt an airport without wheelie luggage and the determination to stop and ask for a wheelchair if you encounter any line that is not actively moving. What may look manageable can quickly become a very sick event if the line stops. Good luck!

So, I've had my standing pulse taken on a number of different occasions since having POTS and for the last year, it has come out to be around 90 beats per min. When I was initially diagnosed, it was 150 on tilt. Last year at Mayo is was, again, around 90- so we all thought that I was getting better right? This was actually distressing, because I still feel like crap and a few MDs said that I don't have POTS anymore. Well, I had to go off all meds for 48 hours for a Gastric Emptying Test. It was horrible, but while I was there and off everything, I had the cardiac center run an EKG after standing 10 minutes. Ta Da! 148 beats per minute and I got it printed. I just wanted you guys to know in case you are on what I'm on (see below)- your tilt table or standing pulse rate results can be altered by these medicines. At least, in my case they were dramatically. I guess that is why they make us feel better, but not totally mended. Maybe everyone knew this, but Wow- it was new to me!

I went in March of 04 when I was newly diagnosed. They will take you without an MD referral. I saw the intake MD who had no idea what POTS and set me up with Cardiology. There I could only see a resident (don't get me wrong- but duh!) who admitted he only had limited exposure with POTS and just said- "oh, its the medication that is making you sick (can't remember- the one that makes your scalp tingle) and just change that. He could not tell me what to change to, however. Then they wanted me to wait around a 10 days to see the same clueless intake doctor again for discharge instructions. We skipped town. I got his summary in the mail- had nothing new in it. Based on my experience- I would not recommend it. They just did not know anything when I went. Things may have changed and they probably have. I think if I was allowed to see Neuro- it would have been better. I did, however, last year go to Mayo in Rochester and saw Dr. Low. Not alot of answers, but much better use of the money than Scottsdale. Maybe Scottsdale has caught up. Maybe you can confirm by phone the credentials and research experience of the Neuro unit and then demand to be recommended there. Don't know...

Yes, I was a recovering introvert at the time. Now I am definately an extrovert. I even have to keep it in check sometimes. If I feel sick and nauseated during a meeting, I will tend to be really aggressive and volunteer for all sorts of tasks. I try and cover up the fact that I feel bad and go a little too far. I don't want this illness to ding my career so I tend to go overboard with the involvement. Gotta stop doing that!!

Same for me. Mine is Friday and I was nervous. First one since POTS. Thx for the post!

I posted a similar question a few months ago. I work in a hospital, so for me to get a handicap pass would mean taking spots from seniors and people with wheelchairs. I battled the decision for months, but like you- I would end up at work super sick from the hike and some days could not work because I could not handle the uphill walk. The pass has been the best thing in the world. I use it when I need to. My MD signed the form and I walked it in (you can mail it). I don't really park in handicap- but this lets me park in patient parking without getting in trouble. It has made all of the difference in the world. If you are like me and cannot think or function after the hike it- you have to get it just to be able to keep your career. I just thought of it as get the pass or risk saying something wrong or making the wrong judgement in a morning meeting due to illness. In order to protect my career and health ins coverage, I had to get it. Someone on the forum told me "We have to own our illness sometimes". That sentence says it all. You don't have to be a hero- ask for what you need. Good luck!

I wonder about this too because I lived in an apartment at the time of onset that had black mold in the bathroom- that was clearly showing. Who knows how much was back behind the wall. We called the health department, but they won't do anything. We've even thought about asking for a tour, then I would fake pregnancy bladder and run into the bathroom- where I would sample the paint, water, ceiling etc. I guess my mom and I get carried away. Oh yeah- if you left anything to drip dry- you would get a florescent yellow ring on everything. The whole place had a constant smell. These were very expensive apartments too. We still think we may go knock on the peoples door, tell them their apartment is toxic and ask for samples!!

Yeah. I've take it every once in awhile. I've had breathing treatments actually because of POTS nausea makes me throw up sometimes and that it my worst trigger. I think my HR went way up with the breathing treatments, it feels a little fluttery with the albuterol- but OK. I have it actively prescribed, but the florinef has really taken my daily asthma away. Like, really away! I would check with your Doc, but as someone with both Asthma and Pots- Albuterol has been a no biggie for me.

Add Prego test. I get drug tested and pregnancy tested everytime. Its funny they never tell you- I always find it on my medical records later. That just cracked me up. Yeah, POTS is an unfortunate name. Plus, I was on Marinol for awhile so that just added to it. The best story happened last Christmas though. My friend's husband is a Radiologist. She told him that I have POTS. He thought it was POTTS, which is TB in the spine. Also, their little son has had immune system problems. When I visited her last Christmas, he came out and yelled from the deck "She has POTS...Don't let her in the house!" It still cracks us up.

Well said. No he is right out of his residence and ridiculous. Given a few days perspective I can now see his opinion for what it really is!

Yes, I do notice that it is worse after heavy activity days. But now, I feel a break in the clouds. One problem is my doc seems to take it less seriously now that there are two things happening: fluctuation of good bp and days when I feel a little more back to normal. I'm so happy when things are good, but then I feel bad again also feel emotionally bad because maybe I've lost my medical support in the process. I went to a GI doc yesterday for the 1st time who concluded that I don't have POTS anymore because of those two things and my tilt @ mayo was not as dramatic as 2 years ago before any of the meds. I really think it has alot to do with altitude- I live @ high altitude, Mayo is very low. Also, I'm on 9 meds. I don't know what to think anymore- I just know that I feel pretty lousy.

My Pots symptoms have changed from just constant to now waves. So I will have 2 or 3 better days, then a wave of 5-7 days of Potsiness. Has anyone had this? Does it mean that its going away?

I medicate myself with green cocktail olives I have struggled with Salt in the past- Salt pills= Cucka! I have had perfect salt intake since I have been eating 1/2 dill pickle and 16 green olives each day. I've even cut down on my florinef, with my MDs permission. For me this has been the easiest+its only 110 calories and 0 fat. Perfect! ps. apparently, cottage cheese is really high too...

This is fantastic. This is what it really comes down to for me, because I am the type that will still attempt to use 30 spoons a day instead of 12. Thank You!

I cried all of the time when I was on Midodrine. But, that was when I was first diagnosed too and everything doctor was saying something different or scary, or differently scary than the doc 3 seconds before. I don't know if it was the drug or a combination!

I have a topic to approach with my MD, but I am afraid to do it. I have been parking in patient parking on my bad days (I work at a hospital). Our employee parking is way out there and it is either uphill or downhill to the hospital, which makes it the reverse at the end of the day. On certain days this walking in is too much and I am sick for hours after that- or is impossible. So, I've been parking in the front spots. Now, our facility is cracking down and security cars monitor the area. I've been trying to walk in from the "legal" area- but I am so weak and dizzy. It will only get worse with the heat. I need a note or a handicapped parking pass to park closer. This is really vital to keeping a job. I just don't know how to ask for it. I don't want to appear lazy or unmotivated. I keep thinking I can handle it- but then I feel so sick. How can I word this note?

You've got time. Everything that is there now, will be there still. You will come back fighting and a much stronger person than before the illness. I didn't graduate with my BA until 28, now I have 2 Master's Degrees. Things will all work out for you in time, but you have to give it time. You must be quite dynamic and goal-oriented to be concerned about it. Maybe check into some "Independent Study" classes with some Universities? You don't even have to live in the same state to take these classes. I took some from the University of Utah that were excellent. You have 9 month + a 3 month extension if you need it . You can work towards a goal and take the worry out of your mind. They are also eligible for federal financial aid. I took half of my general ed credits this way because I worked graves in an ER and was way too sleepy to take classes the traditional way. It might be something worth considering!

My line now is: "POTS is like having Heat Stroke and Stomach Flu all in the same day, and everyday". That will stop doctors cold because they all know what those two things feel like. (most of the doctors that I know in my line of work would actually take a great amount of pride in the fact that they have had heat stroke- the other ones would pretend) The ones that don't believe me- I leave behind! I've also heard "Hey, you look too good to be sick- are those fishnets?" to which I reply "If you thought you were going to die like I am and this were your last day on earth, wouldn't you wear fishnets too?" This goes over big with the old docs because they probably would! Hang in there, Toots!