hilfgirl33

Congratulations!! That is the best. I don't think you could find a better job. I'm a bit jealous, myself!!! lol

Justin, I agree with Nina. You definitely need to find a doc who has some knowledge about POTS and will believe you when you tell him this bizarre things are happening!! GRRRRRRRRRR!!! I could go on a real tangent about docs passing things off as anxiety, but I will spare everyone this time!! lol I also seem to experience these things more frequently during my menstrual cycle. As you obviously don't have that problem, it could just be surges of adrenaline or other hormones that your body doesn't like, or just too much because you overdid, ate something that triggered you. One thing I have learned since I've had this lovely syndrome is that POTS is very weird. Stay Well!!

Justin - When I've had some of the bad episodes, I was unable to get up and walk around, my limbs were uncontrollably moving and I did feel seizure-like except for the fact that I was totally aware of what was going on. However, I have also probably more episodes like Jessica's - where you just feel the shakes and slight tremors. I had an event recorder during one of my violent events (this was before I had my diagnosis). My DH was on the phone with the cardiologist and he was reading the data we submitted. He said my HR was very high (didn't tell me and at that point I didn't even want to know), but that my rhythm was sinus and he couldn't see what could've caused it. We told him about the tremors/shaking whatever - and he said that was not cardiac-related. So I did follow through with MRI of the brain and neurologist, who found me to be normal (ha)!! I would do the same if I were you just to rule anything worse out, but more likely it is these nasty chemicals our bodies are putting out. Good luck.

Justin, I just posted on this subject on another board. I have had this happen to me early on in the illness, but it is pretty much under control with meds now. I thought I was having a seizure but I knew I wasn't because was totally cognizant of what was going on, just my limbs were shivering horribly and my hr was way up, don't know what my BP was at that time, though. Did you do anything differently yesterday that could have triggered an attack. I had this recently (mildly), too, after deciding to have cookies and ice cream for lunch (sugar is a major trigger for me). I happened to have a cardiologist appt that same day and my hr was 116 resting and 135 standing - with a bp of 135/80 - which is extremely high for me. I'm not advocating tranquilizers for this condition, but I take Lorazepam (Ativan) and it does help me when things get really bad. I don't like doubling up on the beta blocker cause it causes my bp to crash too much, but maybe that would be an option. Someone on another board mentioned Phenobarbital - she said it worked for her. I think the best thing is figuring out if there was a triggering event and trying to avoid it. I hate when that happens, it is really scary, like you've lost total control. Hope you are feeling better soon.

Kimberley, I don't know the answer to your questions. I have POTS but have never had a diagnosed true arrhythmia. I do know some arrhythmias are not harmful, and some can be dangerous. I am sure (i would hope) that your doctor would have informed you if anything truly dangerous is going on. My advice is to keep pestering your doctor or find new doctors until you are satisfied you understand what is going on. YOu are your only advocate!! Elaine

I get this too, usually only when I've been doing too much on my feet for too long. I really think they are caused more by being on your feet too long and having a low blood pressure moment or bad chemical moment than a true panic attack. I fight the notion that they are anything other than something going truly wrong in our body, not that we are scared or panicky. It is like our body is saying, you know what, I can't get the blood back up to your heart or brain too good anymore, you did me in, I'm gonna drop BP or pump some nasty chemicals to make you relax and get off your feet. This is really a touchy subject for me and I get really ticked when anyone tells me it is just anxiety or panic attacks because I was sick for about 9 months before I got dx and there were several people that made that suggestion. I KNEW it wasn't. I was having one of the best days of my life shopping with my daughter recently and at the end, I got one of these. I wasn't the least bit anxious before this and I don't believe anxiety or panic caused it. Just my thoughts on it. I just think it is something we have to watch out for and listen to our bodies and learn what our limitations are. Having said all that, I don't think there is anything wrong with learning relaxation techniques or deep breathing because once one of these happens, you do feel panicky then and I think the best thing to do is get off your feet asap and then try and relax. Sorry if I rambled - I am a bit PMSy today !!!

Nina, When you say you have drug allergies- do you have an actual allergic reaction to them? I had a c-section four years ago and I told the anesthesiologist that I didn't want narcotics, they made me nauseous and my bp low on several previous occasions. Anyway, since it wasn't actually an allergy, he went ahead and gave it to me anyway, with a dose of Benadryl, in the spine, just in case. Well, I bottomed out, had to be held feet upward on the table to raise my bp (not a pretty site as I was buck nacked and 9 months pregnant). I think I should just lie and say I'm allergic. Is everyone else truly allergic or just overly sensitive????? Docs don't seem to take 'sensitive' as seriously as they do allergy.

Okay, I read in Nancy's exercise post that she wears a medic alert bracelet she made herself. I have often thought of this because I have a really bad fear of getting in an accident or passing out, and being taken to the hospital and them not knowing that most medicine totally bottoms my pressure out, and them killing me or just messing me up by giving me something my POTS body can't handle. Does anyone wear one? Do you need a prescription? I don't know if I'm being a little paranoid because I'm not a passer outer (at least not yet and hopefully never). I'm pretty good at feeling my pressure go low and doing something about it. I'm home most of the day with my young son, so it is usually relatively easy to just lay down on the floor or drink some water and salt.

Hello Jillny: I was finally diagnosed by a cardiologist after I actually told him that I suspected I had POTS (from reading on the internet after being sick for a year!!), and he recommended I have a cardiac tilt table test. I was very positive on the test for POTS and I was then recommended to a cardiologist who had some experience with POTS. Hope this helps and good luck. It is very frustrating being sick without a diagnosis and I wouldn't go back there for the world. Elaine

My body temperature is very often too low. One day when I wasn't feeling well and I thought was coming down with a fever, I took my temp and it was 94.8!!!! I did it again cause I thought it was wrong and it was up to 95.7. I drank some warm tea and spent time under the blank and it came up to 97.5.

I also get tingling usually in my foot, arm or hands, but sometimes in my neck and head. When I was really bad with POTS I had head chills - very freaky. Don't know what causes them but probably has something to do with blood flow and circulation.

Justin, I have polycystic ovarian syndrome and this is linked very strongly to type II diabetes and hyperinsulinemia. A lot of women who have it have blood sugar issues and do well on low carb diets - and that is true for me too. I have had issues when I was pregnant (I was borderline for gestational diabetes), and once in the doc's office I felt sick and they did a blood sugar on me and it was 63 (I had just had tuna and crackers a few hours before). Many doctors have different schools of thought on hypoglycemia, but I know I have it to varying degrees and if I don't eat protein every 2-3 hours, I feel horrible. As for it being linked to POTS, I wouldn't be surprised, but I don't think anyone has any hard evidence on it that I have read anyway. What type of diet do you follow?? ANd also, do you ever feel low blood sugarish when you wake up from a nap? I often do and sometimes I will just rest instead of napping because of hte way i feel when I wake up. Elaine

I've had numbness in my feet and legs, but not total loss of feeling. The worst I ever experienced it was during my tilt table test when my legs and feet were painfully numb. It most likely has to do with poor blood flow through the legs. The weird thing is, my sister has these symptoms more often than I, and she was diagnosed with MS. We have a lot of similar symptoms, but she doesn't have tachycardia and I have been ruled out for MS.

I had this fear, too, before I finally started seeing a doctor who knew about POTS. He assured me that POTS isn't associated with death, just with a poor quality of life. I still feel that way sometimes, especially as now I'm having problems with my bowels and pelvic pain that is so bad I might consider undergoing a surgical procedure and that does scare the heck out of me. But I try not to think about it and have confidence that my doctor knows what he is doing. If I'm feeling really weird and scared, I just tell myself - this isn't going to kill you, do what you have to do to relieve your symptoms now (which is usually laying down, salt and water or taking one of my anti-anxiety meds. Chamomile tea often calms me, too and I've heard about valerian being a safe and natural anti-anxiety med, but I'm too scared to take it - LOL!!' If anyone uses this with success, please let me know. Good luck. Elaine

Welcome Carla!! I think I've talked to you on another board about salt - lol!!! Are you still able to find salt pills? I liked them so much better than table salt, but apparently Eli Lilly discontinued the only kind I could find around here, so I'm stuck with the table salt!! Where do you get yours? I couldn't tolerate Proamatine as it increased my tachycardia so I can't help you with that. Nice to hear from ya, Elaine

These come and go for me. I am much more symptomatic with palps when I'm ovulating and getting ready for my period, or if I'm tired or ate too much sugar. But they do happen at other times too, but usually much less. Very annoying and frightening at times. I just try and take a deep breath and stay calm when they are really bad cause I think stress prob makes them worse!!!

Yeah, when my symptoms were at their worst, I would sometimes wake up freezing cold, but drenched in sweat (which I normally can't sweat even when exercising). I felt hot and cold at the same time. Now if I'm getting tired, I'll have these symptoms but not as often as before. It could be from the meds, too.

I often get blurred vision, and I have a problem with a lot of visual stimulation (bright lights, blinking, a lot of activity). Often I find that my vision gets blurred after I eat something sugary. I know this can be related to diabetes, but my last glucose test was normal. Also, I have been getting more headaches and just a very tired feeling in my eyes.

I take 12.5 mg Toprol twice a day and .5 mg lorazepam every 6-7 hours (about 2 mg/day) and of course salt and water. I tried Proamatine and it actually increased my hr. Florinef gave me headaches. I did try a course of Celexa and I didn't notice a difference one way or another so I stopped. I may try it again for longer term. Or possibly Paxil, I just saw something on Paxil and how it helps post traumatic stress disorder and actually increased the size of the hippocampus (sp?) so I'm going to ask my doc what he thinks about going that route since Celexa didn't seem to make a difference.

Yes, that is really sad. When I woke up this morning I found that both he and John Ritter passed. I was not a big country music fan, but I am a huge fan of John Ritter. I just loved him. And my daughter loves his new show and he was also set to appear on Scrubs again this season, so things seemed to be going really well for him. I guess you just never know in life do you??

Thanks Dan, I did read some of the article, but will have to read more later. Very interesting stuff. I take approximately 2 mg of Lorazepam total per day. The only significant thing I feel is sometimes emotionally blunted. But I don't know if this may actually be a good thing in my case because when I get too excited (happy, sad or upset), I feel so sick. I do think I'm going to try cutting down my dose a bit. I don't think I'll switch to Diazepam though. I'm going to try it on my own first by just cutting back little by little. I am often capable of doing this without major withdrawal effects, but then I'll go through a bad phase with POTS and I wound up upping it, usually at bedtime because I have a very active little one and it is imperative that I sleep. I tried Ambien but I woke up drenched in sweat (I don't usually ever sweat), so I am reluctant to try anything new. Let me know how you make out. Elaine

Dan, Just curious why you are tapering off? Is there a reason why you can't take lorazepam the rest of your life if it adds quality of life? I often worry about taking the lorazepam long-term, but I don't know if this is a valid worry. It seems to work so well for my symptoms. I am going to take this up with my cardiologist, too.

I am going to see a colorectal surgeon on Monday due to bowel problems and I would be very interested to know if this could be related to POTS. This may be TMI (sorry), but after some bowel movements especially during my ovulation/period phase of my cycle, I can get very severe bowel pain. It is absolutely incapacitating. Is this a symptom of irritable bowel??? Also, after I have a bowel movement, I will sometimes get cramping for a while afterward that is pretty darn painful. I know personally if I eat and my bp is running especially low and I am on my feet, I can get diarrhea immediately, and sometimes it will go away if I lay down. So I know that is probably def POTS related. Elaine

I find that lorazepam really helps my symptoms and it can actually make me feel more energetic than before taking it (that's not saying much). I also take Toprol, and I think that really helps the most (as before I was dx, I was only taking the anxiety med and I would feel somewhat more relaxed but I was having bad tachycardia). Just wondering if I am the only one. I don't want to be on them long term but they really help my symptoms. Anyone else. Thanks Elaine