jjpots

I started on a low dose and built my way up to 30 mg 3 times a day but my stomach still couldn't handle it so I went back down to twice a day. I go through times where I eat just a little or nothing and don't feel hungry and then other times when I do it but it doesn't stay in me for long. I go back to the Mayo in Dec. for my one year follow up in their study so was hoping to make it until then. At least now that I have a scale I can keep an eye on it to make sure I don't go any lower. JJH

Has anyone else been on this medication and, if so, did you have problems with weight loss? I finally went and got a scale this past week because I was getting tired of all my pants falling of me. I was 105 when I started this med. from my doc at the mayo and now I'm down to 95! Any input would be appreciated. JJH

I've been reading about the diff. types of EDS and was wondering if anyone knows of a dr. who would be able diagnosis or say it's not EDS. Thanks, JJH

I never thought about that before but I usually sit with my legs either crossed or I am sitting on one. I also sometimes stand with my legs crossed. My son helped me with the smiley faces! JJH

I was told by my cardiologist quite a while ago that I should NOT take sudafed. I guess I'm not sure if its because of the POTS or cardiomyopathy but I could sure use some right about now! Reading these posts make me want to check out the EDS link. When I was just at the mayo seeing Low and his associate, she made some comment about my ankles being almost freakishly flexible????? I don't know anything about EDS but going to read about it right now. Good luck with the doctor stuff. I agree with the others that you have to take everything with a grain of salt and trust your instincts about things. JJH

Amy, You are in my prayers! Jennifer

The last test you mentioned sounds like the one I did in the research study for POTS except they had me lay on the table and be quiet, then took blood, then did like a tilt table where I was suppose to stand for 5 mintues and then they take blood again. I only made it 3 minutes before they had to put me down. I never got to hear the results of that though I'm guessing because it was part of the research study and not a reg appt.??? The QSART is the other one that I was describing. I didn't do the one with the powder, doesn't sound like much fun either! JJH

Thanks for the info. I'll have to look into that. JJH

Flop, I usually take it in my neck as I have a hard time feeling any pulse at my wrist. I will try doing it for a full minute and see how it goes. Thanks for the advice! JJH

Hi Tearose, Are those the watch type of things people were talking about in a previous post? Where would I get one? Thanks, JJH

I'm going to check it again this Sat. after I'm almost done with my working day. That was when I did it before. Maybe I just can't do the math right???? I don't know how long it stayed like that because I had to finish mopping the floor and didn't want anyone to walk in and see me taking my pulse and get nervous! Good news is I'm going to be going to another building after this Sat. that shouldn't be so difficult on me physically. I'm sorry to hear others do have these experiences too but, once again, it's good to know I"m not crazy either! Take care everyone. JJH

I've been to the Mayo twice to see Dr. Low and still don't know what kind I have. They did that test there you lay on the table and they kind of zap your leg and they watch your hr and bp and then tip you up and do it. I think they are looking for something about sweating???? Anyone know what that one is about? I also remember the first time I was there I had to do the 24 collection thing and I was really low on sodium even though I was trying to take in a ton. Good luck with your research! JJH

I'm sorry to hear of these stressful things happening to you and your son. I hope things improve soon. JJH

I've also experimented with the coffee thing and it doesn't seem to correspond usually for me. Some of my worst days are when I've had no caffine and vice versa. Who knows. JJH

That is so exciting! Do you have a date yet? He sounds wonderful. Good luck to you both JJH

Thanks for the input. I have had an event monitor and holter before but, of course, it was never like that when I had it on. I was thinking I will call my cardiologist to see what he thinks about it. I am on fludrocort, pyrigdostigmine and was wearing my abdominal binder but I think it is just the work is so physically demanding for someone my size and then add the pots onto it. I wish I could find something else I could do that wouldn't be so physical. Take care guys! JJH

After my first pregnancy it was almost 3 years before I received the dx of POTS. I did pretty good with my next pregnancy and again, it had been 4 years after that pregnancy that things have got worse. JJH

I've had to start a new pt job (only 10 hours in 3 days) but the job is pretty physically demanding for me. It's cleaning an office bldg. and a dirty warehouse type of place. Anyway, I've only done it for 6 days total and I've been feeling really tired even on the days I'm not working. This past Sat. (the last day I worked) I realized I felt like my heart was going really fast so I checked and it was 220. My questions is: is there a certain heart rate that can be harmful to your heart? I'm also concerned because of my hx of cardiomyopathy. Not sure which doc. to ask about it either. Any info would be appreciated. Thanks, JJH

I haven't had another episode since I posted so I guess I'm not going to worry about it. If it starts happening more frequently then maybe I'll call the doc. I tend to freak out about the chest pains because of my hx of cardiomyopathy and I worry that maybe something turned worse with that. Just over reacting I think! Thanks for the ideas. JJH

Last night I woke up from a sound sleep with the worst stabbing chest pain I have ever felt. I'm not sure what led up to it because like I said, I was asleep. My husband woke up to see what was wrong because he said it sounded like I was breathing funny. I was scared to go to sleep after that but did with no other problems. When I woke in the morning I had some left sided pain but this time it was more in my ribs. I am currently on fludrocortisone (the one that used to be Florinef) and mestinon (actually the generic but I can't spell that) and was wondering if one of those would cause that. Anyone experience this or have any ideas? Thanks, JJH

Hi Brenda, I just saw Dr. Low for the second time just last week. I do believe he has a lot of knowledge to offer. This past time I must say that I felt more rushed with him than I remember the first time but I suppose he is a very busy man. He asked me to participate in the POTS research and then actually came and talked to me again after some of the testing. I do not know either if he sees children. I have also heard wonderful things about Dr. Fischer. From what I've heard he sounds like he may have more "bedside manner" (sp?) but can't speak from experience on that one. I hope are able to get some good info. to help you make a decision. Has your daughter been dx. with POTS or anything specific yet? Good luck, JJH

Thanks again for everyone's input. Some good info in there. I think things are going better with the new meds and abdominal binder. I'm still working my way up to the 180mg that dr low wants me on. My hr has been coming down over the past few days. It was 172 in the morning, next day 144, then 132 and today I started at 124! Wahoo! When I was doing the research lab part of my Mayo visit they recommended an exercise program for endurance. I was told that yoga or pilates would be one of the best things I could do. Of course, lots of salt and water as usual too. Hope you all are doing well and had a nice Christmas! JJH

Thanks for all the input. What is Levsin? Is it a rx or over the counter? I went back to complete that part of the study on Friday and when they did the tilt this time they had to quit 3 minutes into the 5 minute tilt because I was starting to pass out. I hope it wasn't because of the meds because now they've decided to put me on it. The trial was 180 mg and this time he is having me do 60 mg 3 x's a day but we are starting out with 1/2 pills. I've already been experiencing the stomach and diahreah issues:( I'm hoping they go away with time. I would think that would be more harmful than helpful if you end up dehydrated! I'm just a little bummed because after having my fludrocort upped to 11/2 pills a day I felt great for almost 3 weeks. I thought I was in the clear and then a few days before I went back to the Mayo it seemed to be starting up again. This morning my hr was up to 172 just from standing. Mornings always seem worse for me though. Anyone else using the "abdominal binder". Dr. Low thought that would help too so I'm just starting to try that out too. Bye for now- JJH (Merry Christmas to everyone too!!!!)

I just got back from the mayo and participated (and still am participating) in some of their pots research. I was confused to see people posting about pyridostigmine (mestinon) when on my pills from the study (which may be just placebo) it says "caution: new drug, limited by federal law to investigational use". My understanding is that it's labeled that way because it's not normally used for pots. Can anyone elaborate on that one? They did some other test where they took blood supine and then tilted the table and took more blood and of course recorded bp and hr for it all. I beleive they were going to check something with epinephrine to see if I had high levels of it that would cause the tachy. They also were doing some dna stuff to see if there is some marker that pots people have. I'm going back on Fri. to get tilted and blood taken to see if there is any improvement. I'll keep you posted. My pcp put me on fludrocort a little over a month ago and since he upped the dose the dose to 11/2 pills a day I was feeling good. The last few days I've started having tachy and lightheadedness again. I'm hoping it was just from doing too much and all the getting ready for Christmas and going to the Mayo. Merry Christmas everyone! JJH

I have just recently experienced the feeling of not breathing as I'm trying to fall asleep. I wondered if it was due to the florinef I just started because I've never experienced that before. I had a hard time falling asleep because it seemed like I had to actually concentrate on breathing, like it wasn't just happening automatically. I think it's happened about 3 or 4 times in the last 2 weeks so not a ton. I haven't experienced the other symptoms you mentioned though. Good luck, I hope you find some answers. JJH