julie f

You mention stomach issues, ramakentesh. This is a new symptom for me. I haven't been able to eat a whole lot over the last two weeks. My stomach hurts just thinking about eating. I have been eating a lot of yogurt lately because that is the only food that doesn't make it hurt. It is always interesting to discover the new ways this craziness affects me. Julie

Tommy, That's exactly it. You've nailed it exactly. I'm afraid the new meds aren't going to help or just make things worse. It's so frustrating. Thank you. Julie

Hi all, I haven't been posting in a while because things had been going well for me. I actually had about a month of feeling somewhat normal. Now, strange and annoying things are happening again, and I am not sure how to handle it. I have been waking up with a racing heart during the night as well as in the morning. I am also have some annoying chest pain with any bit of stress. This can extend into my left arm. It does not hurt a ton, just enough to bother me and make me stop what I am doing. I had similar symptoms when I was on flecainide, but I went off of that and the symptoms disappeared for about two months. I see my electrocardiologist on Monday, so, I am trying to wait this out. I guess I am hoping it will go away. The last time I was in to see him, the cardio wanted me to start taking an anxiety med. He also wants me to enter the hospital for two days to try out a different med. I believe it was ativan. I am not quite sure, I forgot to write it down. I am leary of taking any new med. I always end up with some weird side effect, hence the hospital stay for the new med. The only med I am on right now is Metoprolol. I am so sick of this thing, as we all are. It is such a bummer after feeling good for a while. I just don't know what to do next. I don't want the new meds., and I don't want to go to the dr. so that he can tell me there's nothing else to do but try a new med. Can you tell I don't want more meds.? I am almost 40, and I have only been dealing with this for just over a year. I think I just needed to vent to people who understand this. I have an absolutely awesome new man in my life who wants to help me through this. He even researched this as soon as he found out so that he would understand it better. However, I feel guilty about burdening him with this because I don't know what my future looks like with POTS, Sjogrens, and Raynauds disease. Thanks so much for reading this. Julie

Hi, I am about 30 miles from Milwaukee. I have been to Froedtert for autonomic testing. I have been diagnosed with POTS, Sjogrens, and Raynauds. I did not know that there was a support group in the area. I am not sure what time the group meets, and my problem is that after working all day, I am too tired to take that kind of drive at night. My vision stinks by the end of the day. Night driving is a nightmare. I'd be interested in hearing more about the group though. Julie

I have been dealing with migraines since I was 13. The keys for me are two fold. One was to find my triggers. I cannot eat many, many foods because they are sure to cause a migraine between hours and a day. Some of these foods include any rice product (crazy, huh), any product with BHT (a preservative in many cereals and gum), sausages, caffine, root beer barrels , movie theater popcorn, and the list goes on. Second, I have to take between 2 and 4 ibuprofen as soon as I feel the aura coming on. If I don't catch it early, I am done. I hope this helps a little. Julie

Thank you for your replies. Kits, no one mentioned me looking or sounding any different when I was talking to them. All I know is that I could feel it happening. I did have visual disturbances for the prior two days. I see wavy rainbow lines in my vision. I did not feel the bathroom urge either. As far as searching for words, that is daily for me. Others often have to help me find the words I'm looking for. Thank goodness it hasn't happened since then. I will be starting on baby aspirin tomorrow, and I probably not wait a week until I call the doctor next time. Thanks again, Julie

I had another new and for me strange symptom, and I am not sure what to think. I have had all of the typical symptoms of POTS, Sjogrens, and Raynauds. I experience dizziness, fatigue, irregular heart beats, and more, but brain fog is setting in and I can't remember them. Oh, that's a biggie, brain fog. I actually got rid of some of the dizziness by going off of flecainide. However, my irregular beats are back. That being said, last week, I experienced something new for me. I was talking to my co workers, and slowly, I could feel the right side of my body becoming heavier. My right cheek, arm, and leg felt strangely heavy. There was no tingling or dizziness just heaviness. I must have looked and sounded OK because no one noticed, and I didn't say anything. Then, I tried to walk out of the room I was in, and I felt myself lean to that right side. I could not stop myself until I landed with a plop on the table next to me. I was fully conscious, and the whole time, I just felt heavy on that side. Now of course, those around me noticed. It only took me a minute or two to recover, but it was weird. (I had been suffering from auras and migraines for the prior two days.) I called my doctor, and she has some concern about strokes and heart attacks. I have never had either one, but because of our limited knowledge these diseases are affecting me, there is some concern. She wants me to start taking two baby aspirin each day as a precaution. With all of that, my question is...has anyone else experienced anything like that? My doctor and I will continue to monitor this, but it would be helpful to know if others have had that same heavy, one sided symptom. Thanks for your help, Julie

I am being pretty whimpy about this. Today I feel pretty good, and I think why bother going. Things are going well. Tomorrow I will feel crummy and still not want to go. At this point I don't even think its about Mayo. Its just a matter of having more testing. I shouldn't complain because I have had many fewer tests than most. I am just sick of dealing with this. I know I have to learn to cope, but it is always on my mind. Eventually I'll make up my mind. Happy Valentine's Day to all, Julie

If I do go, it would be to Rochester, and I will either wait until spring break or until the summer. I have school aged children who both have some anxiety issues. I don't want them to worry about me any more than they already do. I am told that I should get it scheduled now though. Ugh. I did have back surgery when I was 19. Twenty years later, I still remember some of the procedures I had done back then. I think that is also adding to my hesitancy. Thank you for all of your input. I am not sure when I will make up my mind. My sister laughs at me because she knows that I always take a long time to weigh an issue and finally make a decision. Julie

I had this happen to me just when I was drinking water. I actually had to spit the water out because it felt like my throat was completely closed. I also have problems with losing my voice which can be a problem because my job requires meto talk all day long. My students probably enjoy it. LOL

I've heard about them, but no, I don't have one. I just use a knife. Yikes. Sometimes they don't exactly split in half either. And, the halves go flying. Yikes again.

It makes me nervous just posting this. The thought of going to Mayo is actually making me sweat as I type this. Wow! Here's the scoop. I was diagnosed with POTS in May of 08. Then, by Sept. they added Sjogrens and Raynauds. There is also some buzz about MS. We have been managing my symptoms with a variety of meds but because of my med intolerance, I am down to just Metoprolol twice a day. I have my bad days and then I have my really bad days just like all of you. My dilemma is this. My primary dr and the cardio have suggested that I go to Mayo. They still think there could be something else causing this. I have had an MRI which I thought ruled out the MS. My primary says that's not necessarily so. A lumbar puncture would be definitive. The sensible me says, "Go, and get this ruled out." The scaredy cat in me says, "Are you kidding me?" I have been through the gammet of tests including TTT, sweat tests, ekg's, echo's,...I can't even remember them all. (Gotta love brain fog or selective memory). I am freaked out about the lumbar puncture, and I don't want to do this. My family is very supportive, and several are ready to take me there as soon as I pack my bags. My co-workers tell me to get going so that I know what I'm dealing with. I just can't get past the fear. (By the way, I'm still sweating.) I also don't want to go through the same tests I've already had. I feel like what else are they going to tell me. I don't want to try any more meds because most times, they make things worse than they were. I just don't know if Ican make that sensible side win out. Thanks so much for allowing me to vent this. (Yup, still sweating, I guess the sjogrens hasn't depleated my sweat glands yet.) LOL Julie

I can absolutely relate to the pill splitting. I kind of begged my pharmacist to let me go back to my 50mg tablets twice a day because I too have had to split pills since the recall. This is probably pretty whimpy, but the pressure that it takes to split the 100's would make me have the crazy head rushes that I normally get when I stand. Luckily the 50's are back in.

Although it's getting late, my curiosity about the recall would not leave. So after reading jump's response, I decided to do some research too. I did find one article that said there was something not right with the dosage and the size of the tablets. I also read one forum that had many people communicating about side effects they had been experiencing with Metoprolol lately. I too just went through a round of nasty side effects, but we thought it was the flecainide I was taking. I have recently stopped taking flecainide, and for now, I feel as ok as I can with this crazy condition. I did not have time to post links to the articles that I read, but I'll do some more checking tomorrow. Just one more thing to have to think about (trying not to worry about). Julie

I had the same problem last month, Amber. However, my pharmacist told me that they (the national suppliers) just hadn't sent enough??? He didn't give any explanation as to why. I was able to fill my prescription this month with no trouble. I just filled it last week. I was offered the brand name drug but that was out of my price range, and they had just enough left to tide me over until they had enough. Hopefully, they will get it in where you live too. Julie

I did have the biopsy in Milwaukee in October. I do still have some occassional numbness in that area, but it is not too bad. I was really worried at first, because it was numb for a long time. Do you know if there are any support groups for all of this craziness in the Milwaukee area. I live north of Milwaukee. Julie

Hi Jan, I think I was at the same place and had the exact same tests. My test results were not off the charts enough to get a whole lot of feedback. They did suspect that I had sjogrens disease and sent me for a lip biopsy to confirm that diagnosis. I wasn't real thrilled with the blue bikini either. I did turn purple, and looked nasty. When I had to blow into the tube, I kept telling the nurse it was making me more dizzy than ever. Luckily she was sympathetic, but I still continued with the test. After all was said and done, I felt frustrated because I basically was told the same things I had heard before. Yes you have a chronic illness, here are some meds to treat your symptoms, and there is not much else we can do right now. Hopefully things turn out better for you. Julie

I have had migraines with auras since I was 13. The only good thing to come out of my POTS diagnosis was that I was put on a beta blocker, and it has been helping to control my migraines. According to my dr, if I go off they will come back. I have gone from daily migraines to monthly. Actually, I had one today. Sometimes the weather will touch them off.

I'm in this same boat, Sara. I shower every other day just so I have a couple of mornings where I feel semi ok when I head off to work. My favorite part is trying to do my hair after a shower. Not only do I feel crummy from the shower. Then, I have to put my arms up by my head to make myself look presentable. My co workers just look at me some mornings and say "it's one of those days." Luckily they are very supportive and overlook my somewhat strange appearance. Julie

Cath, Thanks for the input. I have been off of the flecainide for 24 hours, and I feel ok, or as ok as you can be with POTS etc. My arrhythmia is not too serious but I do have some family members calling just to make sure all is well. Thanks again.

HI mkoven, I'm curious about the skipped beats and the adrenaline rush. Do you get the feeling like a whole lot of blood is being forced into your head when this happens? My whole POTS experience began a year ago with this same sensation. I would get a skipped beat and then the rush. I have talked to my cardio, internist, and PCF about this, and all of them assure me that I will be fine. I wish they could understand the amazing pressure this causes in my head, and then, I wonder if they would think its fine. I get them all the time now. Sometimes it even gives me a headache. I am new here and just trying to continue to figure this all out. Thanks for your input. Julie

I have been on metoprolol and flecainide for almost a year. Within the last week, I have had some swelling in my legs, and the dizziness that I usually experience is now off the charts. It was so bad today that I had to leave work. Usually I can work through the dizziness, and I feel functional by 9:00am. This morning, I just could not shake it. My PCF said that the flecainide could be the culprit, and suggested that I go off of it. However, I had to go through my cardio to do so because this could be tricky according to her experience. My cardio's staff said I could go off of it with no problem. I am now wondering what I may experience going off of this medication. Has anyone had any experience with discontinuing flecainide? I am hoping that this will reduce the dizziness and swelling that I am experiencing, but I am at the same time nervous. Any insight would be greatly appreciated. Julie

All three of my diseases kicked in this week. It is so difficult because I need warmth to keep the Reynauds at bay, but I need it cool to help with the POTS. Living in the midwest with temps reading in the negative numbers has been awful. Any suggestions?

Hi, I am new here, but I have been reading posts for almost 6 months. You all have been so unbelievably helpful as I move through this crazy journey. In March of last year, I was diagnosed with POTS. I was extremely lucky because my primary doctor sent me to a good cardiologist. He had me do a TTT within a week, and I was diagnosed within two weeks. However, he did not stop there because he felt that there was more to my DX. Within three months, I was also diagnosed with Sjogrens and Raynauds. Here is where all of you come in. I was feeling pretty miserable, and my mom heard about this site. I was somewhat skeptical, but I figured I would check it out. Wow, every time a crazy new symptom comes up, I come here and feel reassured because someone usually has posted about it. Although my doctors are great, they are confused as to how to treat me. I have told them about this site. I want to thank all of you for posting about your struggles and for helping me cope with my diagnosis. I will post more about my symptoms later, but I just wanted to say thank you, thank you, thank you. Julie