halmad85

I had a bad experience today, I almost went to the ER thinking I might be having a stroke. The only thing that stopped me was that I'm only 25. I had this intense aching in my head. Only the right side, along with the right side of my neck and throat. Then this aching radiated to my right arm, and it started feeling numb (but not completely numb). I was also very fatigued. You know, just really out of it, but not confused. It lasted for a few hours, then went away. I had one very scary moment where my body became very hot and I started having spasms in the right arm. I was so out of breath. Maybe a little panic attack, who knows? Weird, huh? I don't know if it was yet another complication of having POTS, or what. My heartrate was okay at the time. I did have to do a bit of walking today which got me feeling sick afterwards...maybe that had something to do with it. Has anyone else experienced this kind of thing?

I think that could be a bit high. I take 10mg 2-3 times a day. My heartrate has gone down to 40's when I try to take 3 a day. I think I would question that dose. Good luck.

Hi everyone! I've been having a very difficult time trying to get my POTS under control. I spoke to my doctor about it today and he said there is nothing more he can do for me. The only thing I take right now is Inderal and Florinef. He offered me a visit to an EP Cardio though. Which is good because now I can at least have some hope that this doctor will be able to help. It's starting to feel like disability is in my near future. I don't know what to do to help myself get through my working days. I'm a full time nurse and on my feet more than half of my shift. It's becoming way too much. I can barely make it up my stairs these days. My family depends alot on my income right now. My husband is going to school to be a truck driver...thank god. So, maybe when he starts his work doing that, he'll make what I make now and I can cut back on my hours. But, what do I do now? So, I was wondering if you guys would mind telling me what you use that does help. I need some more ideas of things to suggest to my doctor to get me to feel more normal. I can't handle this anymore. I do plan to bring him the DINET list of "what helps". Is there any more advice anyone can offer to me? I feel so alone in this fight.

Is it common to have an increase in symptoms while on antibiotics? I had to start Keflex a few days ago, and I not sure if the date is right on with this, but my symptoms have been really bad lately. Is it most likely related to that? I've still been on Inderal, and it has improved my symptoms, although I'm still not 100% yet. But now, my chest pains are worse than before. Feels like a crushing pressure that goes through me into my back (not very servere). Then it just comes and goes. I've also been having a hard time sleeping these days...so, maybe that's causing my POTS to act up. I'm usually a GREAT sleeper. I lay down and I'm out. Usually I don't even want to get up in the morning. But lately, I'll toss and turn and just can't fall asleep until a few hours later. I'll probably at least wait until the antibiotics are complete before I call my doctor. I'm still hopeful that this is the problem and not just my POTS alone. I don't know how I'm expected to stay at work full time when I get this way. It's been really difficult on me lately. I had to leave work early the other day because I felt like I was either going to vomit or pass out...whichever came first. This condition can be tough to take.

I think the others have answered your questions well. I just wanted you to know that you and you precious daughter have my thoughts and prayers. I have two girls, and I just can't imagine how hard it must be for you to watch your child go through illnesses at such a young age. It can be very frustrating because as you're discovering, it is very hard to find a doctor who is knowledgeable about dysautonomias. I really hope that you find the answers you need soon and your little one gets effective treatment.

That is wonderful news. I'm so glad that you don't have to stress anymore about finding someone who takes you seriously ans cares. So good to hear.

I also had a positive ANA. That has been the only thing they've found in my labs. It was checked after these POTS symptoms started.

Well, I had high hopes for the Inderal, but once again...side effects. Im supposed to take 10mg 2-3 times a day. When I took 3 pills in one day, the next day my pulse was 40. Then I took 2 a day for about 6 days, and yesturday , pulse 40. So, I only took the one pill yesturday and then one today, and pulse is still low. 44-54. I wouldn't be freakin about it but when it gets low, I feel sick just like when it gets high. Well, onto a new med, I guess. I'm still waiting for my doc to call and tell me what to do from here. It's to bad because I thought I was doing well for a little while there. Not completely, but I did see improvement in my symptoms. BTW, How low is much too low for your pulse? Where would you guys draw the line as to when it becomes dangerous? Just so I know for the future. I hope everyone is having a good day.

I had it done recently, but I didn't start Florinef yet. My TB was negative, although a little red. If it turns out that she can't have it done, she can always get a yearly CXR instead. Good luck!

I second that thanks. I'm sure that it's because of these forums that I was able to comunicate with my doctor and explain why I think this what I have. I am grateful to have gotten a chance to talk to all of you. It's always good to know you're not the only one in the world who feels this way. I've never met anyone else with IC or POTS...so this place is great for making me feel "normal". Thanks alot everyone! Jen

My arms or legs go numb all the time also. Even if I'm not putting any pressure on them...they just go numb. I've also felt numbness in my behind or back.. Not sure why, but I think it's probably one of the common POTS things.

I second that! I've never had an actual allergic reaction to a med. I'm just the type to end up with all the lovely side effects. I would say having a severe allergic reaction to a med would give you very good reason to be nervous to try more meds. I agree that you should probably take the first pill in the presence of your doctor, so if you need medical care immediatly, you will not be alone. Wishing you better days, Jen

Thanks Carolyn! It's so good to hear that you responded well to your meds. That brings me some hope. I hope you continue to do well. Thanks for your reply.

Thanks ladies. I am very grateful that I was properly diagnosed. I really was lucky to have heard about POTS and got to be able to push my doctors to try to find out if that's what I have. I can't even imagine how long I would have waited if I didn't know what it was either. I was so happy with how good this doctor was with me today. He really made me feel like he thought it was all in my head, at first. But, it turned out well. Thanks for responding to my question. I guess I can just hope to respond well to the meds. We'll see what happens. I am so lucky to have found this site so I can offer treatment ideas to my doctors as well. Thanks for the replies. Did anyone else have the same type of reaction to the tilt, or did everyone find that their pulse stayed high the whole time? Just curious. Thanks alot again. Jen

Thanks Evie and Amy!

Thanks Ernie. I appreciate that. P.S. Is this disease progressive? I know some of you mentioned that you started out the way that I am right now, until your symptoms progressed. Does that mean it could progress without treatment...will progress...could progress even with treatment? What can I expect for my future? Thanks, Jen Hi Rhonda! I also tried Toprol XL and had the same reaction. I think my symptoms became even worse with the low pulse. I hope you get some relief very soon. Thanks for the reply. Thanks, Jen

I'm so new to POTS, so, I can't really give any advice because I don't know the answer. Hopefully someone here will know how to help you. I just wanted to say welcome and I wish you better days ahead. Warm hugs, Jen

Well, I had the TTT done by the doctor who I thought didn't know anything about POTS. But, he actually came through for me. During the TTT, my starting rate at rest was I think 66. Then they raised the table and within a minute it shot up to 144, and I felt soooo sick. The part I was a little unsure about was that it didn't stay high throughout the test. It went back down to the 80's, then fluctuated between 80-110. Then they put in the IV med, and when I went back up...same thing...pulse 150-160 and all the symptoms. Then it stayed around 130-140 for something like 10 minutes, and went back down. I kinda thought it was supposed to stay up. I don't know? My BP didn't show any significant changes. So, I asked him what he thought from the test, and he said I have an obvious orthostatic intolerance. I said, well, is it the "POTS" that I thought it was? He said he never hears it referred to as POTS, but I definitely do have postural orthostatic tachycardia. I said, well, "that's POTS". So, I got my dx without having to see a non participating provider with my insurance. He's starting me on Inderal 10mg (I think) BID - TID. He gave me the prn for Xanax, and wants me to continue the Florinef. I'll see him again in about a week to discuss how the meds are working. He said if I don't see improvement he'll refer me to the EP specialist in the hospital to take over my care. Well, it's been a long day so far but I'm so glad that this doctor got to see that I really do have a problem and I'm not just anxious. Thanks for all the support along the way. Hope everyone is doing well today. Thanks, Jen

Thanks for all the tips. Maybe it is the brand of mascara itself, who knows? I have difficulty doing other things in front of the mirror, but the mascara is the main problem for me. Just the way it makes me fatigued and makes my eyes so heavy/blurred vision. I'll try a different brand (water based), sit down while applying it, watch the head tilting...and if those don't help, people will just have to accept my beauty the natural way (as they have been these days). Thanks, Jen

I was just curious if anyone has this problem that I have... Ever since these POTS-like symptoms started, I find it very difficult to wear mascara. While I apply it, I feel very lightheaded and SOB (probably from trying to stand still), and my eyes feel so heavy (I can't open them all the way for a while). Also my vision becomes blurred, and I'm instantly fatigued. The mascara I use is not very heavy itself (it's actually almost out so comes on very light). I've pretty much stopped using it all together because of this. I tried it again yesturday and it was the same thing. Am I the only one with this weird problem?

Thant's all the ER has done for me...send me the bill! I'm sorry you had such a hard day. Sometimes these symptoms just get to be too much to try to deal with on your own. You try to go somewhere for help, and get no where. Glad you're doing better now and hope tomorrow is much better to you.

I'm so sorry you having a hard time finding a knowledgable doctor. I know how hard it can be (I'm going through the same thing). I haven't been able to find a doctor that knows anything about POTS. I hope you find someone soon that understands and knows how to help you. Hugs, Jen

I'm another one who would LOVE to be a figure skater. My mom used to take me skating in the frozen basketball court at my elementary school. It was sooo much fun. Then I would always take my little sister to another iced area near our house. We loved pretending we were the amazing figure skaters. Ahhh...those were the days.

Hi Martha! I'm also curious if you've taken any meds for your frequency. Interstim is a big step and of course with it being a surgery you have alot of risks. Have you done alot of research on it yet? Benefits and risks? Have you talked to any other people that have had it done? How long has your symptoms of frequency been going on? Just make sure to give yourself enough time to find out all you can about it. I have IC so I definetly have the frequency. Usually between 18-28 times a day. I used to get up numerous times each night, but my meds have helped with that. Now it's 0-2 times a night. I hope you find some relief soon.

Same here. I'm always having to look back and find out what I was replying to....darn it, I just did it again!! LOL