Deb M.

I'm absolutely terrified to try another steroid for my asthma. But it's an emergency. The doc is trying me on Medrol. I have been on prednisone many times and I'm convinced it's what either started my tachycardia or made it worse!! And it gave me horrible side effects...I become bedridden each time I take it! I'm refusing to take it now. So can anyone tell me if Medrol has similar side effects as prednisone? I'll be on it tapering for two weeks... Anyone have any problems on it, such as heart palpitations, etc?? Thanks! Deb M.

Thanks for the replies everyone! The only thing I feel ok doing is swimming...which doesn't make sense to me cause I'm getting my heart rate up pretty high doing that! My whole body is exhausted after that, but I'm not as sick. The problem is that my doc insists that in order for me to lose the weight I've gained since I've been sick, I need to get my heart rate up at least 4 days a week! I can barely handle 1 day! ugh. And I'm too tired from work to go swim 4 days a week... Sorry to complain... Deb M.

Hmmm... Sometimes with my dizziness I see very faint diagonal lines that cross to form a grid...I wonder if my neuro-opth doc was onto something. Maybe that's why he said what I have may fall in the same family as migraines w/o headaches... Can migraines cause tachycardia?? I wonder... Deb M.

Carmen, What exactly are opthmalogic migraines?? What happens when you get them?? Deb M.

Hi! I've been trying to exercise lately, such as short bursts of aerobics, walking fast, etc. However, when I do light aerobics, I feel so sick for the rest of the day. I feel as if I have the flu and my chest feels horrible! Strange chest pains, my heart feels just weird at times, dizziness, and I just want to lay in bed and sleep! I tried telling my doctor this and she just kept saying that I need to exercise more and make sure I'm sweating when I do so... But I feel horrible after I sweat with exercise!!! She just didn't get it... I feel so sick when my heart rate goes up! Does this happen to you guys? I don't think it's because I've been so out of shape. This is very different. It's like when my heart rate goes up for any reason, my body rebels... Thanks, Deb M.

Hi, I have extreme light sensitivity a lot! Although my only diagnosis is IST... the neuro-opthamologist thought I could possibly have something that is in the same family as migraines without the headache. I also have extreme sensitivity to sound. Both sensitivities make me feel as if I'm going to pass out or that my brain is shutting down. And I was having a very hard time being outside when the sun was setting. For some reason my eyes and my brain felt confused that it was getting dark outside. It's getting better, but still not great! Sadly enough, I'm excited to hear that I'm not the only one who has these problems! I also have nystagmus, where my eye moves involuntarily. It's very subtle. No one can see it without a opthamologist's tool. It makes my world look like it's vibrating...VERY annoying. Deb M.

Hi Everyone, I haven't posted in quite a while... I have innappropriate sinus tachycardia and was actually doing better and able to go back to work teaching this September! The docs had finally found a dose of Atenolol which stopped my chest pains/palpitations and made me somewhat functional! However, my chest discomfort has been starting to come back this week and I have a horrible sinus infection, which sent me to the Emergency Room yesterday. The doctor told me not to take a decongestant, since it is a stimulant and will cause my heart to race. ugh! I'm miserable... Anyway...my question is does your tachycardia worsen when you catch a cold/sinus infection/flu?? Even if you are on a beta-blocker?? I'm starting to feel more dizzy than I normally am again and when I stand up I can feel my heart beating and the palpitations!! Very frustrating... especially when I have a classroom full of children to teach!! Sorry I'm so long winded. Thanks for reading... Deb M.

Sorry if you guys have already posted on topics like this before, but... I am so MAD! I saw a second neurologist last week for a second opinion, since the first neurologist now has no clue as to what's wrong with me except a possible dysautonomia. This second neurologist sent her intern in to speak with me first, discussed my case with him and then came in telling me that it's all in my head! That I have anxiety and it's causing all my symptoms. I've been diagnosed so far with IST and this doctor says to me, "Well, what's causing your heart to race?" And of course I said, "I have no idea." (Isn't that why I was there to see her???!!) Then she told me that anxiety causes this problem. She didn't ask me any other questions...barely talked to me about my symptoms...and just assumes that's the problem. Afterwards, I just cried out of frustration. My dad is angry too...he's a psychologist and would know if I had an anxiety problem!! I live at home right now and my dad sees me every day! None of the other doctors have even suggested anxiety as the root of the problem, except that I was possibly starting to make myself slightly anxious because of all my symptoms that come on unexpectedly. I am a very happy person in general. And very calm. I KNOW that the cause of all this is not anxiety!! arrrrgh! Then this doctor tells me that I should cancel my appts with the endocrinologist and the neuro-opthamologist because seeing them would be pointless since all this is due to anxiety. Thankfully, my primary doc still wants me to go, but now I'm worried that she'll start to believe this doctor, since she is supposedly one of the best in the system. She totally acted like I wasted her time! Sorry to vent so much, but I'm so upset about this because I know it's wrong... Thanks for reading this... Deb

I did Weight Watchers before and it works great! Just make sure you stick to the rules though. You can eat junk food on the diet. That was huge for me because you don't have to cut anything out and feel deprived. You just have to plan for it and keep noting your portions. I like how it prepares you for the real world too. If you do the other ones where they give you the food, then what happens when you're off the diet? What helped me the most was going to the meetings and weighing in there. The people at the meetings take a real life approach to it all. And weighing in every week gave me something to work towards. I didn't want to be the one to gain weight! I need someone to hold me accountable or I won't do it. I'm actually trying to join it again! I hopefully will be able to drive again soon to get to the meetings. I have gained sooo much weight since I've been sick. It's very frustrating... Oh yeah, my doctor loves WW too! She did it herself and lost a ton of weight.

Hi, To the other Deb : I don't take Topimax... I take meds for my asthma, protonix for possible acid reflux, and atenolol. The doctor told me today that sometimes some people get slightly thirsty from atenolol, but she's not sure that's the reason. I saw the doctor this afternoon (she is so nice and wants to help me as much as she can). She did some quick tests for diabetes, and fortunately they came out fine. But I still have to get a fasting blood test tomorrow morning. I think she's checking for some hormone levels too. But she wants me to see an endocrinologist, the cardiologist again, and a GI specialist. She thinks some of the burning in my cheast could be caused by stomach problems. I was on a very high dose of prednisone in Feb and May, which may have hurt my stomach. Hopefully SOMEONE will figure out what's wrong with me!! I'm so sick of being sick! I hope I can get in to see these doctors soon... I hate how they make people wait forever for an appt. Ok, time for bed...I'm starting to whine. Sorry! Deb

Hi Everyone, I see so many posts on endocrinologists lately... and it's funny to me that I was just told today by my doctor to make an appointment with one to see what they think is wrong, since no one else knows. I have no idea what to expect from the endocrinologist. Am I gonna go there and just get stuck with needles? What happens during a normal appointment?? Thanks for any advice and info... Deb

Hi, I understand what it's like to be frustrated regarding your diagnosis! I still don't have one...except for inappropriate sinus tachycardia. I still have lots of other problems that the docs have no clue about! The only reason I have that diagnosis was because I landed myself in the hospital for a few days and they watched my heartrate 24/7 on the monitor. So the doctors themselves saw that my heartrate shot up just walking to the bathroom! If I hadn't been in the hospital, I would still have heart rate issues... I had passed the tilt table test. Nothing went wrong during it. Very frustrating, especially since I started to pass out during the test and they still told me I was fine! As for taking a beta-blocker. My neurologist was going to give me one, but didn't because I have asthma. When I was in the hospital, the cardiologist decided to give me a small dose anyway and see. So I'm on atenolol, which hasn't made me wheeze at all!! It's a lifesaver. My pulse has slowed down considerably and I can't feel my heart beating out of my chest anymore! Just thought I'd put my two cents in... Good Luck! Deb

Hey everyone, I ended up calling my doctor today about my thirst and a weird episode I had last night! I fell asleep last night for probably less than an hour and then I woke up feeling like I had a really high fever. I felt really hot inside my body and really cold outside, and I had these horrible chills. My whole body felt dried out like there was no moisture left... even drinking water didn't help. It was almost as if my body couldn't sweat. It was awful! Then I went to the bathroom and I felt like I was going to pass out before I could make it back to bed. I didn't, thankfully, but I was very scared. I feel better this morning, but still feel very dried out and as if the inside of my chest is burning slightly... ugh!! So I see my doctor in an hour and a half. I'll let you all know how it goes... I wonder if I'm dehydrated. I don't feel right today. And I was doing so much better... Deb

Thanks everyone for your replies! I see my doctor next week and I'll ask her if I don't get to the pharmacy before then. It could be something as simple as the air conditioning is on all the time and drying out the air... I dunno. I just kinda freaked out because I read the write-up that comes with the medicine from the pharmacy and it said to contact your doctor immediately if you have "excessive thirst". Of course that was one of the many symptoms under that section. I'm more thirsy, but I don't think I have such a serious thirst problem that I need to contact my doc right now!! Especially since this medication is making me feel SO much better! I thought that would never happen. Just to clarify...I'm not sure if I have pots...the docs only told me I have IST, but after reading all the info about pots, I wouldn't be surprised if I have it. I don't have the sudden drops in BP, but I do have trouble standing for long periods of time and feel as if I'm going to pass out...

Hi Everyone, The last few days I've felt really thirsty. It's almost as if I can't get enough to drink. I've been drinking tons of gatorade, water, and crystal light. I have doubled my atenolol to 25 mg a day as of last week. I'm wondering if that's a side effect of the drug or a new symptom of my dysautonomia. OR am I drinking too much gatorade and eating too much salty stuff... Has anyone had a problem of being more thirsty?? I don't have diabetes or anything... I've already been tested. Thanks! Deb

I have a weird question for the ladies... Does anyone have worse dysautonomia symptoms during their periods? Do you think hormonal changes can make things worse? I was feeling better during the days on my new medicine until I got my period. Now I keep getting a pressing feeling on my chest and neck and lightheadedness as if I weren't on the meds... It's very annoying!! I keep getting slightly better and then I get hit with a bad day... Deb

Hi, I have to see a neuro-opthamologist in a month. (of course I couldn't get in sooner). Part of my unexplained dysautonomia is that I'm having something called nystagmus, which is a uncontrolled shifting in your eye. Mine is very subtle and I have it constantly, which makes everything look like it's vibrating slightly. The docs ruled out any inner ear problems and the regular opthamologist was completely baffled. Anyone had an experience with a neuro-opthamologist? I don't really know what to expect when I see him... Deb

Thanks everyone for your input! I have felt a lot better on the 12.5 dose of atenolol in the mornings. I can actually sometimes go into a store, without feeling like I'm going to collapse from everything going on around me. But by the late afternoon/evening I start feeling poorly again. And forget going to sleep at a normal hour. By then my HR is starting to go up again. That's why the doc is having me take a second dose at dinner. She was a little nervous this morning that my BP would lower more and I would pass out, but I haven't and my BP actually went up! My HR is normal now...72 BPM. Can a beta blocker make your blood pressure go up instead of down? Deb

Hi Everyone, I have been on atenolol 12.5mg for several weeks to slow down my heartbeat since I have inappropriate sinus tachycardia. Today the doctor doubled my dose so I take 12.5 in the morning and 12.5 in the evening. I'm a little nervous because my blood pressure is in the low range of normal. I'm afraid it will lower my blood pressure more, so it is abnormal. I already feel as if I'm going to faint a lot. I don't need to feel more so because of my medication! Plus I have asthma, which is under control right now. Apparently, atenolol can cause wheezing as a side effect. Anyone experience this? Thanks! Deb

Hi Becky, I'm new also and I've been diagnosed so far with inappropriate sinus tachycardia. The docs know I have some form of Dysautonomia, but they don't know exactly what or why it happened. I've been sick for 4 months now. I actually asked my doctor what she thought about acupuncture and she told me that it's great if you have pain. However, she wasn't sure about how it would work with me. I have lots of dizzyness and lightheadedness where I feel as if I'm going to pass out. My doctor told me that until we figure out what exactly is wrong, she wouldn't know what to say to the acupuncturist about where to put the needles, etc. But if you have a diagnosis, maybe you should ask your doctor what he/she thinks. Or call a local acupuncturist to see if they know anything about dysautonomias. Otherwise, they may not have a clue as to where to put the needles... Let me know if you go and how it is!! So many people have been telling me to get acupuncture and see if it works, but it makes me nervous! Deb

Thanks for all the info! I don't have any of the info on the tilt table test. I just got the results back from the neurologist a few days ago. But my primary care physician is having me get a second opinion from another neurologist in Boston who is considered one of the best in the system. And I've been told to see a neuro-opthamologist as well. I've made the appts for both but I couldn't get in until August!! ugh. At least I'm on their cancellation lists. Well, the ENT told me that I don't have any problems with my ears and my dizziness must be caused by something else. I know there's a condition called labrynthitis where a virus affects your inner ear, but the tests proved that I don't have that... That's why I'm seeing the neuro-opthamologist. I was diagnosed with Inappropriate Sinus Tachycardia when my parents took me to the ER two weeks ago. I was having horrible heart palpitations in the middle of the night and then I started sweating like crazy and began to faint. I was laying flat at the time. Then my tongue and teeth went tingly and numb. Very scary. So the doctors kept me in the hospital for two days and kept me on a heart monitor. My heart rate was high when I was just laying there and shot up when all I did was walk 10 steps to the bathroom and back. They put me on a very small dose of Atenolol to see if that would work and Klonopin to take when I'm dizzy as an experiment. The Atenolol is working so far. My heart rate has gone down a lot! But I still feel like it's not enough. My doc wants to up my dose, but I need to be monitored while on it because of my asthma. I don't think my IST is serious enough to warrant an ablation, which I don't think I'd agree to anyway. Hopefully, my heart will calm down on it's own... My blood pressures have been fine whenever anyone checks it. My neurologist did see that my pressure goes up a tiny bit from sitting to standing, but it's still within the normal range. I've been checking it at home too and it's always normal... I'm heading for a two week vacation with my parents to Colorado tomorrow! I'm a little nervous that I'm gonna have problems there, especially with the altitude, but my father thinks I desperately need a change of scenery! I agree.

Hi, I'm new to this site...my doctor's are all baffled by my symptoms because they don't fit into a nice little box that will give me a definitive diagnosis. Since mid-March (after several upper respitory infections/asthma problems), I've been having horrible dizzy/vertigo spells where I feel like I'm going to collapse. Sometimes, I have spells where I am starting to faint. I haven't fainted yet, mostly because I lay down in time. I've been having heart palpitations and now have started having stomach problems. And when I have severe heart palpitations I become very short of breath. The biggest problem is that I'm dizzy all the time. It looks like everything around me is slightly vibrating and my eyes feel like they're rolling all over the place. I can't really go into stores without becoming visually overwhelmed and feeling like I'm going to collapse. I also get the shakes during or after some of my spells. It's very scary. I've taken a medical leave from my new job and I'm only 28 years old! The opthamologist found that my eyes were slightly shifting involuntarily (called nystagmus) every half second. They thought it was a problem with my ears, but they're fine. After a few days in the hospital, the cardiologist figured out that I have Inappropriate Sinus Tachycardia where my heart beats too fast, which explains the palpitations. The neurologist thinks I have some form of dysautonomia caused by a virus, but that is only a guess. I passed the Tilt table test (my blood pressure was fine), a brain MRI, CT scans, balance testing for my ears, and all the blood tests. Anyone else have similar problems? I'm so frustrated and sick of being stuck in my house unable to drive or do anything! My doctor's are just as frustrated as I am because the tests aren't coming up with anything! Thanks for reading this! Deb

Hi, I'm new to this site. I just took a tilt table test a month ago at Beth Israel Boston and it was absolutely NOTHING to worry about. The people were really nice there and told me exactly what was happening. First they brought me into this small room and had me to weird breathing patterns while I was hooked up to a machine. Then I went into the room with the tilt table and did more breathing stuff while hooked up. After that they tilted the table up so it was almost like you were standing and leaning back, but strapped to a table. Very strange, but kinda funny. They just chat with you while you are standing and they try to keep you there for 45 min. It's kinda boring actually. And they check your blood pressure the whole time. I made it for 1/2 hour then I started to pass out. Then they let me lay back down and I was fine. But I just found out that I passed the test, so my blood pressures are fine. Don't know why I started fainting though. Doctor's still don't really know either. Still figuring it out. With me there was nothing invasive...no IV... no medicine.... just those sticky electrodes to measure your heart rate, etc. I'm not sure if you'll have the same experience, but don't worry about it. I was worried before too and it turned out to be fine. Good luck! Deb