Joann

Spinner, I agree with Pink it is not terrible to wish that others could experience what we go thru for a day or two. Just imagine how they would treat us after experiencing this! I always wish the doctors could experience this. Then they wouldn't dismiss us so easily. I have told my family, if one of the doctor's family member was dealing with this they would not have to wait months or years to get help.

Maybe you need to get your neck checked out again, could be something pressing on a nerve?

I am sorry you are having a rough time. I am the exact opposite, I can walk fine, but I cannot do more than 3 stairs and I begin to feel extremely awful. No explanation for it. In fact, most of my doctors act like I don' know what I am talking about. Hopefully, the cooler weather will help you. Do you have any neck problems? Just wondering if something there is causing the change in your migraines? Wish you better days soon.

I am often afraid my symptoms are a heart attack or stroke, so far not. LOL. In fact, I have a post today about a scary event that happened today (again). I often get nausea with standing, especially during flares. I don't know if I get the same kind of feeling you get mine is more like pressure/tightness. But more pressure and not like anxiety. I am sure someone more experienced will comment on this. I have been told it may have something to do with pooling?

Aimes, I have used vinegar also.It works pretty good. But I also have the brand seventh generation that is in the organic/natural ailse in the stores. Maybe they wouldn't bother you. I do try to use chemicals sparingly, but I still feel like bleach does the best job with really persistent things. So if I have something really bad, I use it, but try to have the windows open. Of course, if I had really bad symptoms, I would give it up. My symptoms are usually worse in the morning. I used to hate to go to bed, knowing I would feel worse in the morning. Now, I know that it is best to try and schedule things for early afternoon if possible. Of course, if I do something I shouldn't like to today, then I just feel bad all day.

Kelly, My heart rate and bp go down some when I lay down. When I have these flares it goes down some with laying down but doesn't go to my normal low. I was at my worst last year and looking back, I was doing poorly and then had gone up 2 flights of stairs. I felt terrible right after climbing them, but I think that was the start of a scary time.3 days later I ended up in ER my BP was up to 170/106. Of course, I was stabilized and told to see my doctor. I ended up in ER two more times that week (once by ambulance) and it got to the point I couldn't even sit up without my bp 180/116. Laying down it was lower but was still high 140/95 or so. I think the stairs are what triggered this. My heart rate does go up at times, but often it is not that high, the bp is the bigger problem. Sometimes the heart rate stays normal, while the bp is high, the diastolic has a tendency to be worse. I am so sorry you are experiencing this regularly. The last few months I still have flares but, I think the medication has helped some (still not sure its the right kind) and avoidance of known triggers has helped me some. But it is so easy to forget that you can't go up some stairs when you are feeling okay, or not to pick up that bag of potatoes! I am glad that I am having some times where I am pain free and actually able to eat pretty normal (avoiding triggers of course). Its been 18 months and I still haven't gotten a firm diagnosis.

I know I have mentioned numerous times, my problem with stairs and bending. Well, I avoid stairs except for porch(2 steps) religiously. Today, I was on the escalator and thinking a million things and not paying attention to what I was doing (its my birthday this week and I was using my $10 coupon to treat myself to a new something)) and at the top of the escalator I realized I was walking up them and feeling awful. Now I am not sure if I just walked those last 4 steps or many more but,,,. I felt bad ,my neck on both sides was throbbing, and felt my pulse going crazy. I left the store trying to stay calm, and by the time I was home my bp wasn't awful but it was 143/92 pulse rate 92. Earlier that day it was 118/80 90. My left temple was throbbing and left upper jaw hurt. I decided to slowly walk the block, because sometimes my bp goes down and I feel better. I even talked to a neighbor, but felt worse now it was 153/94 100. My left side above hip is hurting, the spots mentioned above, some nausea and occasionally I get these sharp pin prick pains, located between hip and private area. When I sit down my bp goes down a little 120/90 81. After a while I get cold and whole body shivers. and feel really tired. My daughter came home and she was upset and of course, made me more upset and I got some pain in my middle stomach along with the rest. I then went and slowly walked the block again, and talked to a friend on the phone. My bp did go down to normal. But going up stairs to house and bending to fill dogs water bowl and all those pains began again. Each time I get up my bp is going up. So far the top number has stayed below 150 and the diastolic has stayed below 100, heart rate is not going up that high it is staying between 80 and 100. I have had the jumps up to about 140, but not lately. Just the bp jumps, even on my two bp medications. And I feel awful when it goes up. I know the numbers do not sound bad, but in past they can escalate to 180/116 and often when I have this happen it continues to get bad for days and often to where I can't get out of bed. That is why I keep getting up to walk, I am afraid if I lay down I won't be able to get up again. Last Thanksgiving I went down some stairs and by the end of the night, I couldn't even sit up in bed without feeling like I was dying and my bp going up really really high. Could dysautonomia cause this, or something else. I have been told my heart is healthy. I wonder sometimes if maybe some vascular problem with small veins/arteries that are not being addressed. Sorry about how long this is, but I really get scared when this happens. If this just happens with a few steps what would happen with more? Every doctor I have seen,does not want to talk about this.

Not really. It feels kind of like warm oil is pouring in certain areas. Warm oil, or bile, but its not bile because it is not just in digestive area. It doesn't seem to have any pattern really. Its not on the skin, its inside and it isn't the muscles. It feels like it is coursing thru, I know it is not the veins or arteries but that is what it kind of feel like. I know it makes no sense. Just another weird symptom to worry about!

Bebe, You should call that branch of CC and see if they do any of the autonomic testing there. I am getting a bunch, at the main clinic, but I would think some of the tests could be done at the branches. At the very least their neurologists and cardiologists should have some experience with this, they are the place to go when you have hard to diagnosis or treat problems.I also got myself on Dr. Grubbs, (actually his assistant,, Beverly's) wait list. The wait list is 6-8 months for her, and about a year for him. If I don't need them I can always cancel, but if I am still needing help, I am least on the list. I am not sure who you would ask about from the mcas, maybe immunologist or rheum? I need to look into that next. Geez.... why can't one doctor do this all, these specialists drive me crazy!

Bebe, Sorry to hear you are feeling down. You have helped me so much when I have been struggling to be positive. I understand not being able to find a doctor to help you. I am still trying to find one too. As to going other places. I am going to Cleveland only because my dad is helping me and going with me, plus it is only about 4 hours away. I won't be able to continually do this, but since I have to pay a big deductible before insurance, I will try and do as much as I can this year, since I am already over the deductible. I couldn't do this every year. Maybe if you can't go to them right now, you could try and email or call the offices and see if they will suggest doctors in your area? It sometimes seems like the squeaky wheel is the one that gets noticed. You know nice guys (gals ) finish last. Often I feel I am too nice and accepting and they walk all over me. If you call and nicely but firmly ask for help, maybe they will? Can't hurt, right? I totally get the feeling of being scared and being depressed and frustrated. As I said earlier, you helped me a bunch recently when I was going through this. All I can say is keep hanging in there and know you can pm me anytime. I think we all relate to these feelings. And as you told me recently (nothing like throwing your words back at you) remember what you are accomplishing. You are doing a bunch with your family, even when you are feeling awful. Hang in there, we will get answers!

I have not been tested for mast cell, but it seems to be at different parts of my body at different times. I have never had it to this extent, but today it is happening very often. It doesn't hurt it is more disturbing than anything. I don't want to be crass, and its probably TMI but I even have it my private area, it feels as if I am/had urinating. Off and on in leg, face, neck, chest, throat, tiny bit in arms. I think it started the other night, but I didn't realize it. My thumb started to have that feeling you get when a blood vessel bursts. Aimes, I am like you, I am trying to self talk that it will be better, by morning. Just can't figure out why I am having this new symptom and hoping it doesn't morph into something else.

I apologize if this has been discussed before. Does anyone get these odd feelings? I am getting these feelings of warm almost burning feelings throughout my body.They are not muscles or on the outside. At first, I thought it was acid reflux. It was this odd coursing hot liquidy feeling in neck/throat, and chest and upper ab. It was off and on. It sometimes feels like it is pooling where my throat and chest meet, but only for a minute or so. But then I noticed it was happening in my leg and face and arms. It does not hurt but, it is uncomfortable and unsettling. I am also not hot or sweaty with it? Any ideas on what the heck this new symptoms is? And what to do for it? Oh, and in the past I would sometimes get a little bit of this feeling in my lower legs when I walked, but it was not exactly like this, and wouldn't happen as much. Only thing I have done different lately, got my vitamin b12 shot late last week. Thanks.

I am similar to Arizona Girl, many of the same issues. I am also hypertensive and get the head, neck pain (and pressure below sternum). I checked some things that don't happen often, but some do during extremely bad episodes or occasionally. Others are daily or very often. Maybe I should have just checked the main symptoms?

Elizabeth, I have no answers for you, but am similar to you, in that my heart rate is not really my main concern. Its just the only thing the doctors seem to be interested in looking into. My bp is much more of a concern to me and more debilatating than the heart rate. In fact, when I look back the heart rate was fine at times when the bp was going crazy. I have often told my family, if I just had high bp like most people. I really wouldn't care as much, those people walk around not even knowing it! I am the opposite I know when my bp is high because I feel awful. Like I am dying! Those symptoms persist even when bp goes down on the meds I am on. They just aren't as bad. I have wondered about baroflex failure, and one doctor a ways back mentioned it but said it would be even more extreme than what is happening, but he did say maybe I was just in the early stages. He had only seen people in the extreme, he was an endocrinologist, who then sent me on to other specialists. My bp changes are with the changes of position. Mostly, when standing up, but sometimes going to sitting or laying from standing. Sometimes it is bad at all times, although usually laying down will bring it down some. They first thought pheo tumor, but now do not think it is. It has been suggested that I switch to clonodine and I have been reluctant to change, after reading your post I am even more so. I am going for further testing soon, and actually just posted about medication while testing. The doctor doing the testing said it was ok to stay on them, but your concerns are mine. I wish they would let you stay overnight and come off them with some help. I hope someone on this site has some insight, although, it sounds as if there just isn't much info available.

Yes, ask your doctor about the levels. I actually have my bp rise with POTS, so I do not increase salt, but hydrate 60-80 ozs of water/powerade a day. But some people have said, I need to have the blood volume test, because I may need salt to increase volume even with high bp. So.. ask your doctor. Everyone is so different.

Love it!!!

I am wondering if going off them for a short time, might actually reflect the rebound effect of going off the meds? I just don't know, but like boymommy3 I am afraid of how my body will react off the meds. I am going to ask if I could either lower the does as Batik suggested for a couple days prior, or could just not taking the morning dose work? Oh, and I have passed the stress test on my meds also. But I told the techs, if they had me do this on a sharp incline or with stairs, I bet I would be an epic fail!

What were your results?

I wouldn't trade my good days for anything, but... I do have a problem that after a good day, I get so depressed when I get bad again. I try to tell myself I should be happy that I have had good days and they will come again. But having that glimpse of the old life, and then having it snatched away stinks. I also am trying to make the most of the good days without overdoing it, not sure how successful I am with that. I have learned to do both chores and fun things. Yes we need to get some things done, but you know what our mental and spiritual health is just as important. Dirty dishes and laundry will always be there, so if you can do something fun - do it! I try to do something with my daughter I feel that is the most important thing.

Thanks, for all of the advice and support. I think I will wait to the April and then call again, and double check with them. alex74alex- that is my concern with taking the tests with the meds, that it won't show what is wrong. That's my problem, scared to go off meds but scared to go on meds. LOL

Totally understand, I have been having a week like that. It keeps coming and going. Today I felt horrible, was kind of afraid, it was taking a turn for the worse. But last hour has been better. The joys of POTs. Hopefully, you will have a turn for the better, too.

Thanks for the advice. I may call the clinic when the appointment date is closer and ask again. My insurance doesn't want to approve the ttt test, the doctors had to submit info for approval, so I guess I will wait until I find out about that. Then I will call and see if they have advice on going off meds. If I feel like I have this past week, it probably won't matter if I am on or off them. LOL. Of course, I will probably be feeling my best when I am there, because isn't that how it goes? I wish I could have scheduled it for when I know I feel bad.

If you go to CC or one of the others make sure you have everything scheduled prior to going. I went in January and saw several doctors and then I had to schedule my tests and the soonest they could get me in is April and they were starting to look at May because they couldn't get one of the tests in, I said no, give me what you can for April. And I know this happens a lot. One person, is really really sick. She just spent 6 days in ICU, her doctor wanted her to go directly to Vandy of CC. She chose CC because it was closer. When it was set up they made it sound like she would be admitted after seeing the doctor, instead, they have her coming back twice in April, again in May and autonomic tests in July! And her hometown doctor felt that she is now in Autonomic Failure. She had to be revived several times in ICU. So make sure you schedule it all, before you leave. I think they are the place to get testing done, but it isn't always as easy as it sounds. Maybe because more of us are realizing we need this and their are so few places.

My other worry on getting off meds. Is I honestly question how I will be able to get there off my meds. I have been on them since I could not even sit up without my bp going up to 180/116. So to travel by car hours, somehow walk into a hotel and make it to the room, then somehow get up the next morning and get back to car, to the clinic. I don't know if I would make it, I might end up missing appt. because I am unable to travel? I know some people manage this, but how?

I have a bunch of autonomic tests coming up at Cleveland Clinic. I met with the neurologist in January and he scheduled the tests with his associate, a cardiologist. At the time, he told me there were two schools of thought. One is the purist, you should be off all meds to get a true reading. Second, was if you have it, it will show whether you are on meds or not. I have had a TTT test and he reviewed the results, he said they were "unusual" and although the doctor that ordered this test, while I was on my two BP meds felt this indicated POTS and possible a hyper type, this doctor said he just wasn't sure, it could even be another autonomic problem. So, he said I should try and get off the meds prior to testing. He told me the lab would call before and explain how to do this. Long story short, I had to contact cardiologist at CC, to find out how to wean off meds, and I admit this thought has me freaking out. I was told he does not want me off the meds. He said if you are still symptomatic while on meds, it will show up on tests. At first I was sooo relieved. But now I wonder, will this mess up testing. I want answers so bad. I really don't know how I will be able to function off the meds, since I don't do all that great while on them! LOL. But I don't want to go there and mess up the test either. One of my meds is a beta blocker and I know they are very difficult to go off. If i a even late for my dose my body gets messed up What are your experiences or thoughts on this?