jodielynn

HI, Just wanted to let you know,I am thinking of your family. Hope K is doing ok.. Jodie

Has anyone been to the Lahey clinic in burlington ma? I have an appointment may 19 with a nuerologist dr matthew tilem. Any imput would be greatly appreciated. Thank you jodielynn

I just wanted to say,Happy mothers day, Being a mom is hard work for anyone,never mind for those who are battling an illness. I have two boys a 5yr old and a 2yr old,some days I feel like I can't go on,but my boys give me the reason too keep fighting this illness. You all should be so proud of yourselfs for all that you do! And for those who don't have children,remember are own moms who at times take care of ourselfs when,we are having one of those many bad days. Happy Mothers day,I hope today is one of those rare" good" days for all of us!! Take care jodielynn

Thank you everyone,I am going to look into MCAD. Thanks again jodie

Another question do any of you get hives? I have had a bunch of allergy testing and nothing game back bother some. However every once an awhile, like right now I get hives. I also posted yesterday about getting foggy eyes,I am wandering if maybe I am just going through one of "rough" spells. Thank you all jodie

Yes like saran wrap. Just scary no headache or anything just crazy vision. I guess its probably a new dysautonomia symptom. Thank you jodie

I was just wandering if any of you get a problem with your vision? The last couple of days my eyes seem foggy,and blurry. I never had any trouble with my eyesight before. thank you jodie

Thank you so much!!!

Hi BellaMia, no I am having the test at my cardiologist office in plymouth. Do you mind if I ask you who your cardiologist is? I live in south plymouth and mass general is only about an hour away? Is he or she knowledgeable on ncs and pots? thaank you jodie

Thank you all for your input I well hopefully get some answers from the stress test.

Do any of you get the feeling like your heart is going SUPER fast even when you are just sitting? I pass out regularly, about five times a week know. The drs told me to exercise,like most of use here on this site. I usually do pretty good on the treadmill at home,just walking. But recently I started passing out on thereadmil. I told my cardiologist and he scheduled me for a stress test on Thursday. I hope they schedule me for an ep study,too see what's going on with my heart. Thank you for listening jodie

Thank you everyone for your input. Its great to find this info out know before I make a decision to go down there. Going to have to seriously sit down with my dr down here and decide what is best. I am so thankful for this forum. Well keep you posted on what we decide to do.

Thank you so much for your kind words Lieze.

Hi everyone, I was just wondering if any of you have had any experiences with Dr Cheshire from the mayo clinic. I was thinking of seeing him. I live in Massachusetts, but willing to travel. I have seen dr grubb,he is great but it is so hard to follow up with him. I still haven't gotten anywhere in my treatment. I have had alot of test,told have autonomic dysfunction in 2002. I have two little boys and want to be a better mom to them. I am currently on procrit,but still passout almost daily. Any suggestions or input on the mayo clinic would be appreciated. Being on this forum makes me feel not so alone. Thank you all for your stories and knowledge. Thank you jodielynn

Any suggestions?

Hi, I have seen dr kusomtos name on this forum before,I wondering what your thoughts were on him? I have autonomic dysfunction,pots,tachybrady syndrome,I had an ep study done on 2001. I haven't had one since,I have a pacemaker but still passout daily. My symptoms have gotten worse over the last couple years. Up and down bps mainly low ones,rapid heart rates 160's even when sitting. I was thinking of asking my local cardiologist for a repeat ep study. I also over the last two years have had episodes of afib,and newly diagnoised with mvp. So since its been years since my last ep study,and so much new stuff. Is going on do you think a repeat ep would be good? And is dr kusomoto worth a try? My local cardiologist here in Massachusetts is willing to work with another dr. I also have seen dr grubb in ohio,this year he is great,however all the meds I have tried that he has suggested have not worked. I am on epogen currently with no results. Thank for listening to me babble on.. Jodielynn

Hi, I had high heart rates,and numerous fainting episodes. The pacemaker worked for awhile,but over the last two years things have gotten worse, I get afib episodes,tacy episodes,low blood pressure. I pass out at least once a day. The drs change my settings in the pacemaker and I have been on numerous meds.so far nothing working. I also just recently have mitral valve prolapse. I hope things work out for you. The procedure for the monitor takes little time. It cam be a good tool for determining what is causing your issues.

Yes, had one its basically like a 24 hour recorder for your heart,mine was in six months then I received a pacemaker. Its a good way to see what your heart is doing.

Thank you, I go see my local cardiologist next week. I well keep the faith,I have two little boys they keep me going..

Hi everyone, thank you for this forum. I am still relatively new on this forum,but I find it rather comforting to know I am not alone in this. I have automatic dysfunction (ncs) and pots. I have tried everything it seems as of all of you I am sure. I have been on epogen for three weeks but no results yet. I am aware it. Could take eight weeks too notice a difference. Its just frustrating some times when I keep passing out daily. Do any of you have any stories of your use with epogen? I am afraid if it doesn't work,that their isn't anything left to try. Epogen was on dr grubbs list of meds for me to try but it is the last one he has listed. Thank you everyone for listening,I well try to stay positive. Jodielynn

It is so nice not too feel alone..I get really bad brain fog also. This past november was my birthday and I couldn't even remember how old I was going to be. I also need to right things down to tell the drs.when a bad episode happens,but I keep forgetting to do that. My five year old son breaks my heart and well say mommy, why you keep forgetting stuff.then he gives me a smile and says I well help you mom!

Thank you Rachel for your information. Sorry too hear you are on so many medications,and still having difficulty. I have come to realize one of the best treatments I can give myself is to take one day at a time. I am also thankful to have my family with me...

Thank you Rachel,for your input. Sorry too hear about your battle with octroetide. Do you mind if I ask, are you currently taking anything? Is it working for you? My husband and I are thinking of buying the first couple of months of epogen too see if I get any results. I am not to hopeful because nothing seems to work,I just want to feel a little better so the days can be a little easier. Or if I can find a med.that well give me a little warning to when I am going to pass out,so I can sit down before I go down hard.

Thank you everyone for your input. I talked to dr grubb this evening and he still feels epogen is my best bet at this point. I well continue to fight my insurance company. I have a son who is five and a son who is two,I owe it to my boys to try everthing I can. I pass out too frequently not to give it a shot...

Thank you guys for getting back to me.. I hope to try it soon,just have to keep fighting the insurance company. I have tried octreotide,it didn't work for me I still passed out four to five times a week on it,and got no warnings ahead of time.. it also caused really bad GI problems in me. But I have heard octreotide is a great drug for some people. The funny thing is my insurance covered the octreotide,but not the epogen...