mom4cem

Regardless of whether he would o.k. for you to fly, you really should have someone with you. I know that is probably not a possibility for you since you posted that you would be doing this alone. That is a long trip for you and far away. I live in NY also and know I have wanted to make the trip back to the autonomic center in Alabama and have not been able to do so this year due to more complications. I'd be afraid to go alone. I hope your Doc can help come up with a solution for you. The train is expensive but at least you could lie down but still would be great to have someone with you.

I take 12.5mg. I was taking it 2x a day then I cut the p.m. dose out. I certainly noticed it in the beginning. Rebound tachy I think, until your body adjusts to life without it.

You are all toooooo funny. My brain is in such a fog I can't compete with some funny input Keep them going

Sorry to hear that. Hopefully this is a passing thing and you will be feeling better soon.

That is horrible There is a program that the local police department here every once in a while runs an ad for in the local paper. It is to recruit people to train them to look for and write out tickets/or to photograph the car and license plates of people illegally parked in handicap spots. It is volunteer and I am so tempted at times to take the course. I don't have the need for a disabled space but it burns me when I see someone pull up and park and have no card hanging from the window. I understand some have disabilities that you cannot see, all well and fine, have the card hanging, otherwise anyone can say they have a disability and park. People are just becoming more rude and violent as time goes on. Scary.

Hi, Any of exercisers out there measure how fast your recovery heartrate is after exercising of any type? Have you taken your rate before exercising, during and then how fast it goes back to normal after stopping? I was wondering if there is any particular guidelines for those with dysautonomia? I'm supposing we don't have have normal recovery times, since we don't have much normal of anything. The more consistently you exercise, would that help to decrease the recovery time of our heartrate? Anyone know?

Cardiactec, Thank you for the great explanation! I've read it over a few times to absorb it. I've been always told mine is sinus tachy and my body is appropriately following what my body is innapropriately shooting out, like adrenaline etc. Just hard to believe that your heartrate can go up just sitting and it be sinus tachy. Mine always show a distinct p-wave and my cardio says it is o.k. Hey, we have to be proactive with our health don't we? You a very knowledgable and it shows that you know and love your work! Thanks again for the explaination and Hoobaid thanks for you starting the thread

Morgan, I hope this works out well for you and you feel like a new person Glad to hear you are o.k. Speedy recovery

Wow, ouch that has got to hurt. Promotes motility is certainly putting it mildly. Hope you are doing better now.

I hope you get some answers soon. Sorry to hear of the trouble you had which caused you to have to change e-mail all. I really do hope it all turns well for you. Please keep us informed.

Dionna, You have lots of friends even though they may not be able to visit you personally! You have us It certainly is understandable about feeling the way you do. Who would'nt when they are forced to spend time lying down, or sitting, giving up activities and things they enjoyed. Knowing do one thing can set you back for a few days. That would be enough to depress someone who does not have any health issues, just hearing about a day in the life. How about a hobby? Knitting, painting,(all things I can't do ), are you artsy/craftsy type ? Anything you really like to do and possibly could somehow still continue to do it while being stuck at home? Perhaps online work, or phone work. There is a website that has leads on at home work and is a pretty reputable website. If interested let me know and I will pm you with it. I've started to look for work at home. Right now I can work outside but not without problems. I go for 2hrs and have trouble standing for that long without heart issues becoming worse. At least sitting I can keep it to a somewhat normal level. Anyway, remember we are friends even if it is cyberspace friends. Where do you live, in D.C? I have family that lives in Alexandria. You will get that positive feel back, I know it.

I give you lots of credit. That is a long day with kids. I can barely do the two hours of watching over them during recess, I have a 2nd and 4th grade class to look after. Standing for those hours, takes a toll on my legs and of course the good old heartrate too. Hope you are feeling better after the infection and just think, tomorrow is TGIF and we can all relax and sleep late on Saturday. I am looking forward to that

I would also get another opinion also if one suggests doing an ablation. The problems that some have had after having it done, give me the creeps and worries me enough that I hope to never have to have it done. Cardiactec, what exactly is automaticity when it comes to tachyardia? Can they distinguish these by looking at an ekg? I ask because I wear an event monitor and hit it when I feel the tachy coming on or during an episode. It shows sinus tachy. I can get sinus tachy even while sitting, I don't necessarily have to stand and when it does hit while sitting it goes to the 115-120's and stays for about an hour and slowly goes down. Just wondering if they can pretty much tell by the ekg's rather than going in and doing ep studies. Thanks.

Our school lets the kindergarten parents only, bring their children to the classroom for the first few days. All the other grades have to let them go in on their own. Needless to say, yesterday their was a big line of all different grades and the parents trying to get in, but they would only let K parents in. The whole back to school and work thing stressed me out yesterday and still today. I can understand K kids. My littlest one just started K also. Some have never been into the school at all. It is a big transition. I understand also that they think the sooner we cut the strings the better, but I think the first few days is important. That they understand you are not leaving them there forever and will pick them up later. Once they see that happen for a few days, they usually are o.k. from there on in. Hope your little one had a good one today.

Definate ouch! I chopped the tip of my finger with a hedge trimmer, I brought the hand with the trimmer down and did not even realize how close my other hand was too it and then OUCH! Hope he is feeling better.

((((HUGS))) Willow. Sorry you are having such a bad time. Quite normal for us to get fed up and need to breakdown. How long can one go on being tough and brave? It has to come out, so let it. I'm glad you have dr's who have been there, trying to help, that is a big plus. It just sounds like he or they have hit the wall, but not that they have given up helping all the way. Hopefully with salt loading may help. It seems it can take quite a bit of this and that, and tweaking this and that to find something that at least helps us a bit. Chin up, and I am sending you a nice box of fluffy, soft tissues for you. Hang in there.

After some realtively minor flares over the past few weeks I've had a big one on Weds. and it is still spilling over today. I started back at work, I work 2hrs with kids during lunch, and when I left I noticed my rate was up. It stayed up, shooting a little more, going down a bit, then up.. This lasted all afternoon, night and still this morning. I took extra beta blocker which makes me feel so tired and draggy. What I get during and after besides chills, is my mouth becomes so dry and my nose and head so stuffy, like what you may feel like after you have been crying alot. I wish someone could shut off the buzzing/vibrating feeling, then I know it is going away, but that is still going. I hate having to think about not working. The extra money really helps us out but for what I do, I need to be outside most of the time, taking care of kids. That can be tough as you all know when your sitting rate is 110 and standing is 140! Forget about walking around!!! I'm really afraid I won't get past this episode and that I am sliding back into the hole. I sent a reading to my cardio about an hour or so while in the episode and they called back and told me it was sinus tachycardia. Does anyone else experience the dry feeling in their mouth, nose and stuffy head during/after episodes? Do you feel like you are waiting for the next round to start? Feel bursts of adrenaline? Feel miserable whether you heart rate goes to 90 or 120? (this can start whether I am sitting or standing, knows no bounds) I feel it in the pit of my stomach. What about chills? Sometimes I get full blown chills other times I have chills that come and go every few minutes, not full teeth chattering chills but chills like your skin is crawling with each one, it goes from head to toe but I don't always have goosebumps with it. Internal it seems. I am so digusted and ready to give up. Thanks for listening to my pity party.

I get this also when the adrenaline is pumping more than usual. I have no answer as to why other than adrenaline puts our muscles in the fight or flight mode and that goes for our chest muscles also. Just a guess. I had a stressfull day today also with sending my kids of to schools and starting back to work. Felt hyped all day with heartrates spiking to 120 sitting for over an hour. My chest has been so tight. Know you are not alone.

Hi, Sorry to hear of your flare up. It is quite possible it is a flare up. You have been doing well, probably pushing yourself more than usual, you mention sickness, insomnia plus the upcoming of school start, well that could be enough for anyone to flare up. Your body may just be getting over being sick, still dealing with the insomnia and upcoming changes, very delicate balance. Some of us just get thrown right up into a flare, with no forewarning while others may feel it come on gradually. Maybe a little extra tlc, extra fluids, maybe by tweaking your meds, of course with your Dr. ok., you will get back on track with enough time to get back to school mode. Hope you hear back from the Dr. soon and feel better soon.

I currently take lexapro and that seems to be helping me. I take a very small dose. I also have taken off and on for years Klonopin, still do. Xanax was a little to strong for me. It is a personal decision. I'm sure all would like nothing more than to be med free and feel good, but if one can't then you can't. Possibly it is because it calms the nervous system and can help to control the adrenaline in some people. I hope it continues to do this for you. Good luck.

Sorry if this is already an established link. Came across this and though some might like to read this. http://www.phoenix-cfs.org/Orthostatic%20i...0-%20source.htm

Always have to be ready and armed with our info. Thank goodness for the leaflet, as we know they don't like to listen to something verbal, they like to see it in print. Hope you are feeling better

Thanks. I had the mag cocktail today. Feels a bit strange. I feel a warmth sensation and he told me that was normal, as well as I had read that too. He said he may just do the mag w/saline and forgo the other mix next time. I just had a little pain when he would push about 4cc/s in and then I could feel it hurt/burn in my vein right at the site of the butterfly.

Yes, of course asking your doc would be best. Personally, I have taken an extra beta when I needed to. I had the o.k. Your doc should be able to tell you the most that you can take. My cardio said I could go up to 75 or 100 if need be. I take tenormin(atenelol). I take 12.5 in the a.m. and if I need it I take another. I know toprol is long acting so maybe there is room to play since you really feel the affects before 24hrs is up. Maybe you can get up earlier and take the dose a little earlier so it will have taken affect before you leave.

I've been seeing a doctor of osteopath, who is a m.d. also along with my cardio. My intracellular levels of magnesium came back below normal. He told me it would take months and months of oral magnesium, which I have been doing for years, to get it to budge even a bit so he suggested iv cocktail of mag and vit c and I think some b vitamins. A Meyers cocktail I believe. This is supposedely to help push up the mag level more quickly and then the oral mag becomes maintenance. I would need a few of this IV's. A little nervous about having this done. I know it might sound out there but I have read on the web of some having this done and having good results. Thanks