ajw4790

Yeah, I am good at getting a lot of random bruises.... probably due to meds and that I am not very graceful!!!

278 bpm! Wow! At least they finally saw it!!! There is proof!!! I am glad you finally got some answers! I hope that it will lead to some relief for you! Good luck!!!

Happy Birthday to you!!!!

Happy Birthday!!!!

Happy Birthday! Hope all is well!!!

Happy Birthday!!!

I also think that all the arms above the head movement in the heat while standing semi-still has an affect. Also, if you do much of the bending over or whatever to reach for a bottle or shave your legs can cause symptoms. I know it does for me! Oddly, enough how I FINALLY started to get diagnosed with this after having it likely my whole life was I told my dr. that I get sick in the shower a lot and almost pass out along with menstrual cramps etc. She was like interesting that is not normal I think it is vasovagal syndrome. So, it definitely has to do with the dysfunction of the autonomic nervous system seen with us. Be careful, it can hurt if you do pass out. Also, I was told never under any circumstances to ever enter a hot tub again, for fear that I could pass out and drown. Same with bathtubs, have to be careful.

Yeah, yeah, I got another question! (Ya'll must hate me! ) I saw somewhere (not sure where) that for salt loading you are supposed to load with not table salt, but like sea salt or something??? Anyone know anything about that? P.S. I also found last night after consuming a lot of salt that I had more heart palpitations etc. Does anyone else have that happen? I guess I need to get my electrolytes tested? I am not sure if they have been or not. I will add that to my long to do list. P.S.S. I am going on winter break from school, so I am "focusing" on trying a variety of things over break. Next quarter I have to go on clinicals and work with patients in an acute hospital setting (likely warm etc), so I am trying to get in the best shape I can. I don't think the patients want me trying to pick them up and transfer them and I pass out! So, I am going over everything with a fine tooth comb etc. and trying what I can. Thanks for ya'lls help!

Thanks for the link!

Yeah, if your BP is all over the place it is better to monitor it, then not. But, if it is stable then there is likely less reason to monitor multiple times a day or less you are symptomatic and trying to determine the cause. It may seem semi-neurotic, but it is better to be safe and know what is going on. Because ya know at the next drs. appmt. they will ask about what triggers your symptoms etc, so it can be good info. Just try not to worry too much if it is high or low. If you have been told to do something like increase salt if it is low, then this way you know so you can adjust accordingly. Good luck!

Hi! Yeah, me again! So, found the other things that a high salt diet has been linked to, gastric cancer and exercise induced asthma. So, anyways with everything we learn at school and then looking up some things, it has led me to these questions. Thank you guys so much for giving me information and wonderful input! If we don't retain all of that salt and it just leaves then, no biggie! I am just mildly concerned if that doesn't happen! I just don't need to make things worse! I guess part of my electrolytes in balance question stems from a lot of muscle cramping etc. when I injest a lot of salt. So, I figured my body is telling me something, so I just wish I knew the appropriate way to respond. Happened again tonight... I know a lot of people consume electrolyte powders or drinks on the board. I do this to a degree and am not sure of the right balance. I don't want to over do it, because potassium can lower your BP (and don't want that!). There needs to be a manual to this thing!!!

I thought the salt was to increase blood volume etc. and not necessarily because we don't have enough. So, I guess it really seems like we could easily ingest more than what our body utilizes or excretes, and that in turn would affect the things listed before. I don't know... I just know that sodium can cause decreased bone density due to blocking calcium etc. Also, caffeine decreases bone density. Not to mention I probably don't consume the best amount of calcium, due to being somewhat lactose intolerant. So, I just don't want to mess myself up more. So, are we really using all that we consume? Do we need to balance with other electrolytes? Has anyone successfully seen a nutritionist etc. that has explained all of this to them? I am just trying to figure this out along with any deficiencies (B12 etc) and effects of the meds (what they deplete from the system). There is too much! Thanks!

Hi all! I am struggling to put together all the dietary things- what to do, what not to do, how much etc. There is the dietary restrictions of dysutonomia, and then any other deficiencies and regulating of vitamins and minerals. So, I just wanted to put it all together in one place, and get input on experiences and thoughts of others. I know we are all told different things and come from different knowledge bases and backgrounds. I don't know if I am the only one confused by all of this or if there are others... So, maybe this can help others as well. I don't know where to start... I guess with what the drs. have mentioned. (My particular diagnoses are listed in sig. line below, and I take Primidone, Zoloft, Atenolol, Neurontin, Prilosec, daily multivitamin, annd motrin as needed). So... Drink plenty of water- but not too much (I may have a problem with this- one thing I need to work on- but I am always thirsty!) Decrease or stop using Caffeine (I did for a while- now I am being bad again! Do others agree this is a must do? ) Decrease carb intake (esp. sugars and simple carbs) - I am just okay at, but really am not good at meal planning around this one Increase protein intake- I have tried hard with this- I eat more meat, protein bars/drinks, nuts, and dairy Salt load- I was just told to do it, but not how much (Cardio pretty much said don't eat fruits or veggies? ) So, I have been working at these, but as I learn more I have more questions and concerns! Most recently I am concerned about the affect of too much salt in ones diet. Too much salt in a diet can cause of course high BP (not worried about), electroltye inbalance, decreased bone density, gastro. issues (ulcers), kidney stones, and dehydration. (It seems like I had seen at least one other, but I can not remember it...). What is too much? Are drs. concerned of these issues? I was never told to supplement with other electrolytes to ensure a balance, so are we supposed to supplement? How much of each? Or does supplementation of other electrolytes just recreate the already existing "problem"? I hope this makes sense and I am not being abnoxious, I am just concerned and lost, and know that there are a lot of very knowledgeble people out there, that can hopefully give me some perspective. I know a dietician seems like a good idea- right? Tried it... they were only familiar with low salt diets and decreasing carbs and protein. Would be great if I could find one familar with everything! Thanks for putting up with me and would be very greatful for any input and insight!!!

Hi, I wonder if a well educated pharmacist could help you out? They wouldn't know the entire situation, but they should know the meds. Just a thought. I wish you luck!

There is just too many vitamins that we may be deficient in! I am not sure if I was tested for Vitamin D, I will have to ask. So, for those of you with it, regular supplementation wasn't working (daily vitamin), so it is necessary to take much larger doses? Is this an ability to absorb the vitamin problem that is causing the deficiency? Thanks! Good luck to ya'll!

As far as the sleep study goes I have brought it up to drs. but for whatever reason are not real into it and just brush me off. Weird with them having diagnosed me with RLS! Maybe they just want to wait? I don't think it is an apnea issue, but more of what others have posted on as not getting restful sleep with alpha delta sleep and/or the night owl syndrome etc. Or plain old RLS. I guess it would be good to know and try to treat!

Hi! I have a blood pressure monitor at home that I use to check when I have symptoms or every couple of days to see how the meds are affecting me. I am constantly changing meds and always have symptoms so it ends up being at least every other day or so. I don't do anything with the info. other then if it is low, I am like well I guess that is why I feel cruddy! I would keep an eye on your BP if it fluctuates a lot or runs high. Also, if you have concerns make sure to mention it to your dr. Did your dr. know you dropped meds? Did you drop too much at once? Hope that helps!

Hi! I know I am new, but I wanted to go ahead and say hi! Welcome back!

How would you know or think it may be a transporter problem?

Hi Waterbaby! I hope you are doing better. I know to a degree how you are feeling. Maybe just try to take little steps at a time, and do what you can. You may have to push yourself a little bit. Don't be afraid to do things "normally". Just remember that you probably have different limits than others and the most important thing is to listen to your body! As far as getting back out there are you a student or do you work? If neither is there any way to do either even for small amounts a couple of times a week? Also, just for your own piece of mind and independence, would you rather move away from your parents, to avoid relying on them too much? Not to move cross country from them, but to get your own place somewhere, even with a roommate if you hear of someone you know looking for one. I know that some of these things have helped me and if things were different I may myself be much more in that boat. I don't know all of your current condition so I do not know if any of this is possible. Also, maybe even small things like going out for lunch with someone, or shopping, movies etc. I am always tempted to say no to invitations and do many times, mainly because the other people can go party for hours after a six hour day of classes and I am exhausted. So, there are definitly limits a person can handle. I wish you luck and that things begin looking up!

Thanks for ya'lls help! I have been a little distracted with final exams. I will be thinking more about it again once these are out of the way!

Online holiday shopping!!! To beat the heat and crowds!

Hi all! I know many of you have said that you have heart rate monitor watches. I have been considering getting one. Before I do, I was wondering which you all prefer, and which features are a must have? Thanks!

Sounds like you are on top of things! I hope it works well for you! Ironically I was just going to ask you if you are on a beta blocker because that could be doing that to your heart rate. But, you answered my question! What did you have the monitor implanted for? The low heart beat or for other arrhythmias? I wonder why they were not at least a little concerned? Esp. if you were up and moving? Good luck!

Hi! I am on Zoloft and have taken Relpax (triptan for migraine like Axert). I also have samples of Axert when that runs out, but fortunatly I haven't had to take it yet. My experience with Relpax was relatively good. No side effects to speak of, and most of the times it worked for the migraine. I think once I took a second one as prescribed, because it was still there. I think then that it worked. Also, I should add that currently I am on Atenolol (beta blocker) as a preventative. I hope it works well for you!