Joann

Do you stay in the hospital while they run the tests? Just curious, I go for some tests in April at the Cleveland Clinic, but I stay in a hotel and do the tests during the day. I am a little bit scared, I know how my body can react to some things, and they want me to attempt to go off meds before they start. I don't see me being able to do this, so I am freaking out a little. Just wondered if this was standard or not. I am thinking of asking them if I can stay on meds, I know they may change the results some, but the alternative scares me more.

Arizona Girl, Can you explain what you meant about the hyper pots and the norepi. You said something about it becoming excessive and then not able to produce it. This confused me, if we can't produce it why is it excessive? Sorry, it might make perfect sense, but I just can't figure it out.

Boymommy, Everyone is different. A lot of people are super sensitive to medications, but not everyone. I also am taking metoprolol. I take 1/2 tablet in am. and 1/2 in pm. I also take another blood pressure medication. I think it is a lot of hit or miss on the medications. Some work, some don't, some make it worse and maybe some you need more of. My medications are working somewhat. I am still having scary surges and will probably have to try something else. In fact one doctor wants me to try clonodine instead. I have to get the courage to try and change. It may work better, but my fear is it may work worse. I know what worse feels like and I don't want that. I have had really bad things happen when I have been late with my current meds, so the thought of going off to try something else scares the be jes, out of me! So, maybe more will work for you. Or maybe another medication will be added. I wish they had formula that they knew worked but it seems like we have to go through a lot to find what works for us.

I am always worse in the a.m. Most of the time it gets better as the day progresses. When I was at my worst I would wake around 4 am and it would be at its ultimate worst until after 6 a.m. After noon I would start to feel a little better and by evening I would feel the best of the day and have an appetite. Lately, it is somewhat better, but I still struggle to do anything early in the a.m. If I am able to sleep later, it is somewhat better. I do wonder if part of it is being still for long periods of time and something chemical that we need at that time. I sleep propped up with many pillows and some of my daughters stuffed animals. I am in a semi sitting position and it helps a little. Oh, and I used to be a morning person also. I would jump up and shower and be off. Now I try to shower in the evening and do any morning prep the night before. Ugh..

Canadiangirl, I have been embarrassed to ask this also. My POTS started in Sept. of 2011 and although I often am discouraged at how I am functioning, compared to before I am much better. I am also on metroprol 12.5 twice a day and also on doxazosin. I am terrified to be intimate because of this. I have the same symptoms as you, sometimes it will also feel like the area around my nose is being suffocated or I don't know how to explain it. I get pain in my upper left jaw and many of your symptoms, and it can set me back for days/weeks. I feel like I am crazy, who heard of such a thing. I had to explain my fear to my husband. We had somewhere important to go the next day and I told him there was too likely that I would not be able to do anything for days if we did that. How is that for an excuse?! I felt so stupid, and I know many people will not believe me if I tell them. I told one doctor (cardiologist) and she had no response. None. I often think how am I suppose to live like this, avoiding stairs, lifting things and anything that is going to trigger arousal or deep emotion? Issie, so this is common for MCAS but not other POTS? I am still going for testing, I thought maybe hyper pots, because of all my high blood pressure problems, but maybe its MCAS. How do we go about testing for this. If we could get treatment for this that would be soooo awesome. I have often felt like, although I have been improving, I am not really living, just surviving. Its as if good or bad emotions and any activity can trigger it. What are we suppose to do, just live a blah life? Canadiangirl, sorry I don't have any answers but just wanted you to know there is someone else having the same problems.

The only way to know is to go to ER and get checked out. I have had those feelings with my POTS. But, the first few times I had those feelings I was told to go to ER. They can run tests to make sure this is not a heart attack. Especially if you haven't had this happen before you should get checked out.

Boymommy3, Sorry for the delay in this response, I was away from my laptop this weekend. I had my kindle and it would allow me to view but not respond. I have had the pressure you describe. It would (and still does) scare me because I get it in my upper left jaw, near the ear or by the left temple. Sometimes it will also be in the back of head and neck (on the left side) even on the top of the head. At times I would get it in my left arm or below my sternum. Can't help you with it, just let you know you are not alone. I also understand how scary it is to be alone. Or alone with your kids. I have a daughter and I will try to hide it from her as much as possible, now I just tell her I am not having a good day. But when my husband is out of town, and I have and "episode" it is scary. I am glad you were able to go to your parents. My one suggestion was going to be-calling a good friend or another potsie friend. When I have the beginnings of a "epsiode" I will try and talk to someone. My husband is not my go to person for this, another woman seems to be better for me. If it is a friend who doesn't have an illness, we try to just talk about whatever, if its a potsie friend we talk about it and other things. It doesn't make it go away, but sometimes it makes it more manageable. I emotionally feel better. Now there are some people I will not call during this, at least not to chat, because they get too upset and end up making me feel worse. My dad will drop everything for me, but talking to him gets my stress up even more, because he is so upset that I end up feeling like I have to take care of him! But if I need anything from the store he is the one. And there is always this site, if you can't talk to anyone else. There are also some facebook sites out there. I have one that I am on, and I had a scary episode, I asked if anyone one available to talk right now, and sure enough I had two people call me. So that is a possibility also.

Statix, I have no answers for you, but can tell you I had the same reaction to them. I ordered them and when they came in they made me come to the store to try them on. As soon as I put them on I felt different and then when I stood up, I felt terrible, but not in the legs, but in the upper body, I knew my blood pressure had gone up. Sure enough, my bp had gone up to about 150/95 and heart rate was up to 125. I took them off and by the time I was home it had started to go down, to about 135/90 and later that day it was down to more normal. But the next day, my one leg continually hurt me when I was not keeping it up. I asked my doctor about the reaction to this and she couldn't explain it. She felt that they could still help. Insurance didn't cover them and I wasn't spending $150.00 to feel worse. Now one woman who has many dysautonomia problems told me, that this reaction for hyper pots is typical. That compression socks do not help them. I guess we just have to keep trying things, it must be dependent on why we have whatever we have. Maybe we don't have low blood volulme, but some high chemical problem?

Kris, How is the clonidine working? My cardiologist wants me to switch to this. I haven't yet because I am so afraid of how my body reacts to medicine. So there is the double whammy of stopping something that is working somewhat(whenever I am late taking my meds I feel terrible) and the second whammy of trying something new that may help or may make it worse. I know I will probably need to just try it because it may be that miracle drug for me, but I have been waiting for a "good time". This weekend my daughter had a tournament and now this week she is on school break, so I am thinking of trying it after that (maybe). You seem to be very similar to me, so even though I know we are all different, there is a possibility if it works for you it will work for me. I don't have the flushing like you, but when I wasn't on the medication that I am on, I would get those rushes that would sometimes make me flush or sometimes the opposite, I would get deathly pale with this. Since the medication, I do not have this happen as much, except for those extreme flairs.

I have testing set for April there. Most places have a wait time. Dr. Grubb has a year long wait list and his assistant is 8 months. I figure set up appointments, if you don't need them later you can always cancel them. Unfortunately, I will probably make them all because so far no one I have seen has been helpful. In the past, I didn't set up appointments figuring I should wait til I found out if the upcoming appointment would give me answers, when it didn't I then had to make another appointment for a longer wait period, so now, I figure go ahead and just set up a bunch. That way when one doesn't work out, I just go on to the next one. Sad, but true.

Wow, I hope one day I am able to run again. I couldn't run 100 feet let alone a 5k!

Ash, The pancakes taste like they were just made. I nuke them about 20 seconds on each side, if more is needed I will add another 10. I add mini chocolate chips to the batter. I know not very healthy, but hey I need to gain weight, so I will even add whipped cream to mine. My daughter is a pure maple syrup kind of girl (expensive tastes).

I love to hear these stories, I hope more of them continue to post. It gives me hope that I too will be better. Your wife is an inspiration, but so are you. To have a partner every step of the way, is so wonderful. You prove what a great person you are by posting this for all of us also. As someone else mentioned if you could maybe tell us a little more about her diagnosis and what helped in her recovery, it would be even greater! Thanks so much.

Kris, I had such a similar experience. I cried when they said I didn't have a pheo. And my endo is a very caring man and said "I know there is something wrong with you, but I am not sure what. It is something that you are going to have to go to some large research medical institution." While it was great he felt there was something wrong, I was again back at square one. I have been told possibe hyper POTS but no one in the area does anything for this or tests for it. If you decide to go to Cleveland Clinic, learn from my mistake. Make sure they set up tests before you get there. I went there in Jan. through there Grand Consultation Dept. They set up appts. with specialists, but now I have to go back in April for the tests. So I spent money on gas and 2 nights hotel and meals and now I will have to again. I suggest skippingGrand Consult and calling the neurologist and cardiologosts dept, mention their autonomic clinic. I am also going to try and get in to see Dr Grubbs in Toledo, but the wait time is around a year! And they put you on the wait list until they have your records. I just got my records together, so I need to send them in so, I can get on the list. I know it sounds long, but if you find someone before this you can cancel and then if not you are on the list. I understand your frustration, I am in a similar situation and hope you find answers soon, too.

You are right, guys don't know how to deal with it. My husband ignores this also. If he can leave to avoid dealing with it, he will. I used to think he doesn't care, but some people told me he actually is quite worried but doesn't know how to handle it. He does not go with me to doctors appts. I wish he would, but I have learned this is his way of dealing with it. When I really, really need him, he comes through. Takes care of groceries, takes my daughter to school. He has told me not to worry about work or anything else. But he is not my go to guy if i need comforting or talking, he can't do it. I guess that is why we have this site, so we can talk to others that can understand. Good luck and hang in there

Just wanted to add to your rant. So difficult to be up beat when you don't know from moment to moment how you are going to feel and what wonderful symptom is going to be your buddy for the day/week/month. I actually had an ok few days and then I got the flu. I thought I was going to make it through ok, but on the day I began recovering, I began to get a bunch of POTS symptoms and now its been day five and I am freaking out. I don't want this to be a down slide, how much too push and how much to not. If I sit, or lie down too much, I seem to have a diffcult time getting up. But if I get up and do too much then that can trigger more. Ughh. I need to eat to keep my weight up, but I am having stomach issues and nausea. This syndrome stinks and every symptom is awful, what ever one is current is the worst. And I don't want people who feel fine to tell me to just try to be postiive and the doctors are going to figure this out. I just want to slap them. Thanks for letting me rant too. So thats my rant.

For my daughter I cook a huge bunch of pancakes one day a week when I am feeling good. Then I put wax paper between them and freeze them. For school mornings they just need to be microwaved and she has a hot breakfast. I also try to cook something that will last us another meal. For example chicken one night with potatoes and veggies. The next day chicken can be added to a salad, or put into tacos. A roast can become a meat pie the next day and sometimes we eat the leftovers as is. But we still fall back on take out or healthy frozen meals at times. Like tonight, my husband is out of town and I am feeling terrible. My daughter is having a friend over, which helps so they can entertain each other and I told them we would order pizza or subs because they can be delivered. Our intial plan was to go out to our favorite spot but I decided that wasn't the best idea.

I do feel bad, but I also have been jealous of people that have other problems. I know two people that have had breast cancer in the time period I have had this dumb thing. One has reached her year recovery and is back to her life the other is struggling with reoccurrences, but in between her treatments she feels fine and is working throughout the entire time. Now, I know that their problems are just as big or bigger than mine. But I often am jealous. One seems to be all better and both got support from family, friends and the community at large. Another guy has congestive heart failure and his family baby's him and yet he is in good enough shape to go away for a weekend with his guy friends drinking and hanging out. I don't get the babying and wish i could go away for a weekend. Oh and I had the flu this past week and I got more care and sympathy from my husband and others than I have had in the past 16 months. I told my husband I would rather have the flu than POTS any day. He couldn't believe that I was feeling worse the days after the flu than when I was at my worst with the flu. Sometimes I have wondered if I am being a baby, but after the flu, I know that I am not, this thing is really as awful as I think it isl One thing, you know how they say this is an invisible illness, well this illness has definitely changed how I look. I look older, more wrinkles, more gray, too thin ( i was always thin, now I battle to put pounds on) and just look blah. I guess people who don't know me well would think I look fine, but people who have known me for years tell me, they can tell there is something wrong. I won't post a picture of myself because I hate how I look right now.

I do get these feelings also. At first I was told it had to do with reflux, but now I believe it is just a POTs thing. When I am having flares I get pressure below sternum and the throbbing on the side of the neck, like its the arteries/veins. I also can get the same throbbing on my left side of upper jaw near ear and near left temple. It can go into my left arm and the back of my head mostly on the left side of the spine. That is why in the beginning I kept thinking I was having a heart attack or angina and I kept being told I wasn't. I get them the worst when my bp is spiking high, but now that I am on medication I can get them to lesser degrees when my bp is being controlled. So far no one has been able to tell me why. One person told me she thought it was common with Pots. So? Just more fun things to worry about

Bustersacc11, I seem to be on hyper side too and I am the same way with coffee! I used to be able to drink it and now, there is no way. Infact, I do not drink any caffeine. The only thing I am okay eating chocolate (thank god). Sorry Shan1212, don't want to take over your post, but maybe this is helpful info for you too.

Ramakentesh, What does that last sentence mean? NET defiency dlineation via MIBG reuptake? Altrusim, While most of my problems are when I stand, I do get these problems sometimes when I am just changing postions. Like turning over in bed, or getting up after sitting a while. When I was at my worst, just turning my head could set it off. Of course, I still do not have a definite diagnosis. The doctors that are near where I live have said POTs, some kind, doesn't really matter what kind. That is why I have gone to Cleveland Clinic for more answers. My area has many hospitals and they have all been disappointing.

I am afraid to try it. When my problems first started, I had drank and wondered if that had caused the episodes. The doctor told me no, but months later, my family encouraged me to go out and have a good time. My husband and I went to a card game and I had a few beers, and became extremely ill the next day and continued to feel awful for days afterwards. My primary doctor at the time said it was just because I was so underweight, but she also knew nothing about POTS. So, I haven't had a drink in a year. Sometimes, I wish I could. Our neighbors are extremely close and we would gather at my house and have fires in the firepit, and have a few drinks to relax. Or watch sports on our outdoor projector. Yes, we can still do that, but not quite the same. But I think some people on this site do still drink

Okay I hope this posts only once, My computer is doing funky things and I lost my reply so I am restarting it. Ramakentesh, Can I take you to my next doctors appointment? LOL. Seriously, this stuff gets me confused. I get the basics but the rest just zooms over my head. It is as if my mind refuses to learn this, I am not normally like this. I mean, I am a librarian for gosh sakes, I research for a living (not so much now ) CMReber, Wow! Snowboarding, that gives me some hope for sure. Especially right now, I am going thru a bad time. Its like I am on the edge of a bad flare, feeling bad and having stomach issues, which only happen when this flares. Having tons of pressure below the sternum and on the side of my head. I think its a combo of things, getting over the flu, a huge snowstorm blew in, it is right before my cycle and maybe doing too much with all of this happening. Ugh.. I actually went to work yesterday for the first time in 3 weeks. My boss is able to keep my job for me if I come in 6 hours a week. So I went. I wasn't sure if even the drive would be too much, but I did it and I felt ok the entire time there. But when I got home, my daughter who is 12 needed my help. She watches a neighbor dog and had no friends available to go with her to walk the dog. So I went, not too smart, it was freezing and on the way back home I started to feel bad, and I havent felt good since then. Little dog tried to bite me too! Walking is my exercise that I have been doing with this, but the last few weeks, i was in Cleveland, then my family was sick, then me, so I guess I am out of practice. Oh and I haven't had my monthly B12 shot, that probably is not helping. I thought about taking a liquid B12, but then I wonder, which is best which may not be good. I question every thing. Same with vitamin d. I need stuff at the grocery store and don't feel good enough to go, and my husband has to leave for a work trip (not great in a snow storm), so we may have to scrounge with what we have. I am hopeful that in April, I will have some more answers, because right now it is difficult to know what will help, when I don't have any idea what is causing it. I just try to maintain until i find someone to help. thanks for all of your help and comments. all of you

The flu *****, but what is a herx?

Hyperpots, I haven't had my NE levels tested sitting/standing, but they were tested in the hospital when they were testing for the pheo and they were elevated at 870. What did you mean when you said you did not go back to where you were when you went back on the meds? That you took a step backwards when you went off the meds for testing and didn't get back to the same point when back on the meds. So you salt load even with the high blood pressure? That is interesting that volume is low because of NE. Today I was feeling pretty good and I over did it, so I am trying to not get up too much. I should have known better.