mom4cem

Hi Ellen, I tried those,,had no luck with it. I have a MIO ekg accurate wristwatch. No chest strap needed. Just place your fingertip on the button and it checks the rate. Like I said even that way it gives a funky reading once in a while.

Sorry you are feeling so bad. I hope your Dr's come up with a good plan for you and that you will be feeling better soon.

Julie, I still get tachy even on the beta blockers. I think it can only keep so much to keep the adrenaline at bay. I feel the uneasiness also and know my rate is going up though they say it is always in sinus rhythm and just sinus tachycardia..still is difficult to deal with.

Hi, Are you wearing a heart rate watch or one with a chest strap? I have one that is ekg accurate(watch) I tried the chest strap one and found I could not always get a reading. or it was really funky) I can tell you that there are times when I check my heartrate and it shows 238..it is not my rate,,it is usually caused by a bad connection with my fingertip and the monitor etc. On the website for the watch it told me that as well as I contacted the company. I mean I knew for sure my heartrate was not like that. It even at times drops to 40's,,and I know that is not right either. I was told if there is not enough moisture on you fingertip,,or to much pressure that can affect the readings. I am not saying that is what is happening to you, but I would bet anything you would notice a rate of 238! Keep playing around with it and see how often it happens. I can do it 2-3 times in a row and come up high, low then finally somewhere where I think I would be. Now I don't know how much of a variation in heartrate one should have, meaning like at rest, should it go from 70-90..is that normal or should it be pretty much in the same area while at rest.?...hmmm

What great items! Wish I was craft, but I am not... Can't wait!

Wow, that was some episodes... I've not experienced the same stuff, but I am on a monitor now also. Good that you were wearing it and hubby thought quick to hit the button. Hopefully the cardiologist can help you sort things out now. It is very humid, at least here it is and can make you feel ten times wors. Hope the rest of the weekend is a calm one for you.

Sorry to hear of your bad night. That must be scary Your posts always sound strong to me, you get through these episodes. I don't think I could handle it. Hugs to you and hope you are feeling better now.

I just had a tachy attack. Not to high but according to the readings I varied from the 70's to the 105's. I took my bp and only really the systolic was high...129/131 the diastolic did not change much,,around 81.. I spend most of the day either normal or low like 110/70 or 105/65...I sent over my reading and they said it was sinus rhythm and o.k.. Certainly does not feel o.k.!! I don't think mine has anything to do with blood pressure though since it seems to be o.k.,,unless it really drops prior to an attack and I just cannot tell. I can just feel the uneasiness before the attack comes on. Ablation scares me but reading what you both had gone through, it comes down to the lesser of two evils...

Welcome. Glad that you were able to find help through this site and hopefully you are on the road to feeling better.

Hi, I don't have this but if I remember reading about this from MightyMouse. Here is the link. http://dinet.ipbhost.com/index.php?showtop...l=loss+of+taste

Hi, I can relate. I felt good for a while, had some nice low heartrates. Felt "normal" for a week but still had other symptoms, then came a crash. When you don't "look" sick by others definition or just don't have the symptoms a the time, they assume you are o.k. There is just so much more to this than hr and b/p. I think at any time symptoms can change and one can become dominant and another may quiet down. Know that you are not alone in feeling this way.

Happy B Day to you!! And many healthy more!!!!!! Are ya one, are ya two, are ya three...lol Enjoy.

Welcome, you will find much support here. It is tough to feel so bad and try to complete school, work just life in general. I hope that you are under good care or at least have someone who is able and willing to work with you. Do you? Is there some way you can do online courses to continue with college. Something to lessen the burden. Sending big hugs your way.

I wish I could offer you some helpful ideas. There is that nasty rebound effect when you don't take or miss a dose. I know that feeling. I can't take to many meds either, I have tried and have had some yucky side effects. I don't remember exactly what your docs have said but they have concluded those very high heart rates to pots? Even sitting are they that high? I know when I get surges my hr goes up and sometimes so does my b/p. It can be a short time or a long episode. Otherwise I tend to have fluctuation hr and b/p on a beta blocker. I take 25mg which I break up. I've tried to reduce the meds, wait longer to take the next dose hoping that maybe I can do without them, but all I need is a little twinge of my heart racing or a surge then I hurry and pop the pill. I hope when you go back to your dr. he/she can offer you some suggestions. Feel better.

Staying positive is a tough job in itself and you are trying to do just that. You have a full plate now with worrying about your mom and your work situation etc. I get random muscle and/or joing pain. I never really associated it with anything except that it was probably my bodies way of handling the stress of whatever I am going through. It is amazing how your body talks to you. I hope things turn around for you and you are successful with the ssdi and I keep your Mom in my prayers.

I understandable to feel that way. Nature of the beast. I have 3 kids the youngest is 4. I also work within the school system but only part time and am home also. Now I too worry about what will happen during the day home with the little one. The two older will go to day camp. Especially if you are not feeling well those feelings surface, then when you have a few days of feeling o.k., you start to forget if only for a short time. I echo what everyone else says, try to keep hydrated, dress cool. You'll do fine.

Sorry I have not caught this post till today. It is awful the treatment he has been getting. Though I was happy to read that the trip was fine and he is home feeling not to bad. I hope he gets the answers he needs soon.

Dynakids would be a great place to start. I know there are two in NY but I don't know if you are from the area. Sorry that your son has to deal with this also.

Welcome! You will find much support and friendship here!

During this past year I have been able to keep with my 2hr job in the school during lunch and do most of my normal things,,,bring the kids to school, walk up and get them etc. The past month or so I had some very good days, but it came to an end and I feel worse than before. I am afraid of becoming housebound, because even staying home I am symptomatic. Sitting, standing doing backflips,,all does the same and feels the same. I guess it is hard to not get or be depressed when certain parts of your life are put on hold. Hopefully these are just setbacks and one day we will all be back to our "functional" point where we can be out there doing the things we once did even if only in moderation. I don't even expalin it to friends because they have no idea what dysautonmia is. If you say tachycardia, they may know but still don't understand. Mostly I will get oh, anxiety. You need to relax.. Baby, all the relaxing in the world does not stop the tachycardia from coming. They don't get that and never will. You have to be in someone else shoes to understand but I don't wish any part of this on anyone. I have friends,go out when I am able and try to keep up a good front. Some days are better some not. I try to keep myself together for my kids. They still need to go to school, be picked up etc. But like I said neither friends nor family really understand or know what is going on. Hang in there, better days are ahead no matter how far away they seem. You always have the forum family to turn to.

Congratulations on your success! What you have been doing to seems to be working. Keep on with it and good luck.

I would say costco also or fibro/mps. Have you tried feeling for the pain with your fingers? Can you induce the pain by pressing down? I can in the same areas on both sides of the last ribs. When I am bold I will work on them. They hurt and hurt for days after but then they ease up for a while. Guessing these trigger points can be formed from stress/tense, changes in the way we breathe, or use our arms..almost anything can set up these points.

Two deal with pediatric dysautonomia and two others dealt with familial dysautonomia only. At least that is what I read. I have not heard of anyone in particular recommonded except for Dr. Stewart who sees pediatrics. Heard is a great doc but I am long since out of the pediatric stage..lol..

Hi, I don't know of any docs in NJ but I do hope you find one. I live in NY but from what I researched many of the ones in NY have limitations to who they accept. I'd be interested if you get any info for NJ. I much rather prefer to see someone through word of mouth from someone who has seen a dr.

Hi Sophia, I looked into working at home for a while then stopped. I did come across this website though that was very helpful. You may want to look into it. http://www.wahm.com/ I knew someone who did the infomercial operator and enjoyed the flexibility of time and the extra income it provided while staying home with their kids. I'd be interested to hear what you turn up on this topic. Good luck.