mom4cem

Sandy, Wish I could make it, but looks to tough with getting back from a little trip that morning and then kids have games in the p.m. If something changes I'll let you know. Really great idea and so glad you got it started.

Oh my goodness, has she not been through enough already?.. Please tell her I hope she gets out of there real soon and I'm thinking of her.

I can't add anything more but I hope that if this friend is truly a "true friend" then she will understand. She must know what is going on with you since you have been contact with her over the years. Perhaps she really does not understand to then extent of how you really feel. The others all gave great advice

Please send Ernie by well wishes. I'm sorry I can't offer any ideas though. I really hope they find something to help soon.

I would be on the hunt for a new one. I know it is frustrating to have to keep searching and explaining but he does not sound like one that will ever be sympathetic to your complaints and sounds like he will probably get more condescending as time goes by. Hope you can find another doc soon.

Welcome Helene, Glad to see you had a good Dr. who was able to diagnose you. Hopefully with many of the self help measures listed, you can help yourself without the meds since you say you are unable to tolerate them. (me too for the most part). How tall are you? BTW, you English is super!

Hi Sarah, Sorry to hear of all you have been going through but glad you found the site. I too agree with the others on persisting that you be seen. Your age and the crisis that you have gone through should raise red flags for them that you need to be under a dr's care. One who can handle it all or at least be willing to consult with others. I'd keep calling also or like someone else suggested, to get an advocate, mom/dad, sis/brother,,someone who can call and spend the time explaining your situation and the need to be seen a.s.a.p. I hope you get the help you need soon.

Me too:)

I get the chills and teeth chatters and nothing,not even a heating pad gets me warm. Sometimes it just happens and I have it all day or sometimes it happens with surges. Have you been doing more than usual? Busier this past holiday week?.. Being overstimulated, even if you don't think you are, it can just be there, the adrenaline slowly trickling in and the chills start. For me the heartrate can go up after also. Most times the heartrate is up before the chills but it does happen the other way too. Hope you are feeling better.

Yup get those too. Those pesky pvc's and pac's. Can really make you jump out of your skin! Getting it documented on a event monitor or holter can really help to put your mind at ease. They are annoying,,,, but are benign. Extra fluids can help, relaxation and of course there is always medication, but sometimes that helps and other times it seems to make things worse. You are not alone.

Hi Melissa, Sooo glad to see you are at home. Though we don't really know each other, I could not wish you any better prayers and well wishes than I would for a family member!! You are a woman of strength and courage and have seemed to have found an inner peace, wish we all could be that way. I wish you a speedy recovery and may this giant step home be on of many "victories" for you!! Hugs

Liz, I ditto what everyone else has said. I too go through periods where I feel pretty good, then there are times when your remember that you do have this dysfunction. I do not have the dx of POTS but they say dysautonomia. I think you just need to enjoy every day and really cherish the times you feel well. You may never progress any further and just experience some minor symptoms so don't feel that you are "doomed" to one day have full blown symptoms. I'm sorry to hear of all your family has gone through

As far as heart rates, before beta's I could jump up to over 120,,still do on occasion, but now on beta's it usually is 70's sitting and 80's standing, but if it goes to the 90's sitting or standing, I feel lousy, just as I had when it was in the 100's-120's etc. So guessing though rates can be controlled the other symptoms may not always back off too.

Those flip flops are a common thing with me prior to getting anything from a cold to my period. Usually at least 2-3 days prior to getting sick.

vertigoheel is the name. My friend had shown me the bottle because I questioned the name too. Target filled the RX so I guess it is fairly common.

Good luck and keep warm. I hope answers and the right treatment are right around the corner

I find mine usually stem from allergies. It just hits out of the blue and I can have it for several hours then it will usually clear up. It may return over the next few days or it may be months until the next attack. I think everything just swells up and nothing can move through and the nerves in the ears get disturbed and send the mixed signals. I have taken antivert for it, but it makes me sleepy and I can't take it while driving or working. So I take zyrtec and a little bit of sudafed liquid decongestant(bitty bit) and wait it out. Sometimes if I feel one might be coming on I pop a zyrtec then and can avoid a full blown episode. Plenty of water because the zyrtec and decongestant dry you out. I know a woman who takes vertigoheel. It is an rx and she says it helps her immensly.

Sorry to hear of this. Will be thinking of your brother, you and your family during this time.

I've been to the center in the past also. I think it would be good to go, might just offer another perspective. As for tests, when I get tested I have only the tech in the room but the Dr. checks in, and if they need him, he is just in another room checking someone else out and can run right in. I guess each office does it differently. I'm sure whichever dr. you are seeing, is right in the next exam room etc. I never had the dr. in while I was doing the exercise test either while down in Ala.. Which Dr. are you scheduled to see?

Sorry to hear of that but know you did the right thing. They can't speak to us and tell them how we feel, we just have to go by what we see and feel. Beautiful dog and little girl to boot!.. What a cute pair!!!

I would also try to go for a long term monitor. I've done that a few times and it really can help to put your mind at rest once and for all.

Hi Jacquie, Naseau is one thing I can't stand also. I've had that time to time lasting a few months. I;ve found also that small meals, even if it is a few cracker, whatever my stomach can handle is what I have to do. There were times water or even bread stirred up the naseau. Nothing cold, try some flat ginger ale, plain saltines, even ice pops. I can feel full right away or feel like I may never stop eating but either one is no good so one really has to make an effort to eat small frequent meals. How about yogurt-plain and add some fruit on your own so there is no so much sugar? Not ice cold, let it sit out a bit, can help to replenish what you are losing by having a tummy bug, which by the way, maybe when it leaves you will feel somewhat better. Hope you feel better soon.

So sorry to hear what has been going on for you. Please do no give up hope. There is someone/something out there that has not been tried and can help, I'm sure. Be thinking of you.

Rita, I hear you on the dilemma of finding a knowledgable Dr. here in NY. I have yet to find anyone either. I rely on my cardio for basic things but he has know knowledge of dysautonomia either. I hope you find someone soon.

Thinking of you Melissa and I know the right doctor with the right answer is right around the corner. Keep the faith.