New here, wanted to introduce myself..

[mom4cem]

Hi all,

A little about myself, I'm a 38yr old mom of 3, work p/t in the school. Have been diagnosed with MVP/MVPS, dysautonomia and fibromyalgia since 1990. Though back then and even today, not many dr's that I've come across know or want to know about these conditions. I've had low b/p, gray out at times when standing or getting up from bending over or kneeling,especially worse in warm/hot weather., and that is as far back as being a kid! Pac's and pvcs and tachycardia off and on for years along with panic/anxiety, IBS, from a non-sweater to a sweater, twitches, shaky hands and sometimes legs, wired but tired, tingling and a whole host of other symptoms that overlap so many different things I don't even know what I have at times..lol. Recently going through a bout of tachycardia off and on. Comes on gradually, feel dread in my stomach and my heart starts to beat fast, the more I notice it, the faster it gets it has been as high as the 140's to 150's but lately in the 120's or low 100's. Sometimes I can ride it out and even abort it from become full blown and other times it hits and stays for hours. I have chills and I mean teeth chattering chills off and on, low temp,GERD,aches and pains everywhere, at times inappropriate heart rate for the activity, waking up and going to the bathroom can zoom the ole rate up quite a bit. Notice every single sensation that goes on in the body and the list goes on. I was tested, tilt table, down at the MVP center in Ala, back in 90 and at that time it came up blunted, whatever that means,, but Dr. said I had, at that time, a mild form. Seems I go through different symptoms that last for months then something else comes up. Lately it seems to have reared its ugly head big time.

Been under a cardio's care since 90, have reg. echo/stress tests, blood etc. Using an even monitor and all it is showing is sinus tachy. Dr. says I don't really fit the exact criteria for dysautonomia now, since he does not think my case is that severe,(if he was me and feeling this, I think he might think differently). Line of treatment is to keep taking my beta blocker to keep rate down(even taking the bb my pulse is usually in the 80s, which during an episode of tachy goes up, aciphex for gerd and wants me to try paxil very low dose, which I am quite frankly, nervous about taking. I have not started that yet. I'm digusted because I don't have control over any of this, have really been trying hard not to let on to the kids that anything is different than usual but it's getting tough.

I'm tired, cranky but not yet ready to throw in the towel. This has got to pass!! I live in the NorthEast but I am planning to go back and visit my MVPS dr in Ala and hopefully get re-evaluated for dysautonomia and get some answers.

I hope I can be of some support to others, and anyone who can send some warm weather to the Big Apple, please do!!

Thanks and looking forward to chatting with you all

[LindaJoy]

Welcome, mom4cem. I'm LindaJoy. I'm new here, too, and haven't been officially diagnosed yet, but I was told ten years ago that I have POTS (simply through manual blood pressure tests). I live in Ohio and have an appt. at the Cleveland Clinic the first week of April for a tilt table and, hopefully, some answers. I have a good many, in fact, I think all of the symptoms you have, either a few at a time or all at once. I can go for months feeling okay--never normal--then, boom, something happens to trigger the POTS and I have a heck of a time getting "over it." I think you're wise in wishing to see your old doctor who first diagnosed your dysautonomia. Or, maybe you can see a new specialist, one who knows a great deal about the condition, in your home state. I've found, in the ten+ years that I've had problems related to this condition, not too many docs, cardiologists included, know very much about it. You need to keep looking until you find one you're comfortable with, who is willing to listen to you and work with you on this. About taking the new medicine, I'm terrified to try new meds. I won't, if I can help it. But, if you have to try the medicine, if you feel it may do you some good, maybe it would help if you had someone there with you, another adult, who understands what you're going through and is willing to be there the first couple of days of the med until you know how you're going to react with it. As far as the kids go, most people with dysautonomia have it for always, so hiding it from them may not be a good idea. They'll eventually see for themselves that something is wrong with Mom, and they'll be scared because they won't understand that it's not fatal--I even have trouble most days thinking that it's not. I think explaining the condition would help them more to understand that Mom's shaking or tachycardia is scary, but it's not fatal. And, they can be a big help, then, too, on the days that you are feeling a bit off. Hope this helps a little. Oh, I'm a mother of two, and my poor kids have had to deal with me with this condition for years. My daughter, especially, gets scared when I have "attacks," but she knows about the condition now and is more at ease with it.

Take care. Know you're in all of our thoughts as you go through this.

LindaJOy

[dizzygirl]

Hi

Welcome!!

I am new to the site too. But have found it to be very helpfull.

I was diagnosed with POts in 2002. I have suffered with it since I was about 12 yrs old. And I am 23 now.

I suffer with alot of the symptoms that you mentioned, I unfortunately have not found alot that has helped it! But I cant listen any time!!

I hope that you are feeling well today and that you enjoy the forum.

Best wishes too you!

Linda

[Ernie]

Hi

Welcome to the Forum. I am sure you will make new friends here.

[tammyokc]

Hi and welcome! When you said wired but tired, I about dropped my teeth. That's how I describe myself all the time. I have been in that state constantly since October 4, 2002. I am new to dysautonomia/POTS myself but have had it since I was nine. I'm 30. The only thing that's helped me is Ambien to sleep at night and occassionaly Atvian (anti-anxiety). I can't take new meds either. I've tried beta blockers at the losest dose and they make my pulse go crazy and it's already 110 resting. Wish I had more advice for you. I think what LindaJoy said was right on the money. You have to be honest with your children but not present it in a scary manner.

I have the panic/anxiety with tachycardia, IBS (mostly constipation), non-sweater to a sweater, I also have major insomnia. I am never tired just constantly wired and edgy and I feel everything, even the slightest of sounds makes me jump. Have you read about the sympathetic and parasympathetic system? It explains a lot and why we feel EVERYTHING 10 times more than normal people. I think our sympathetic nervous systems are stuck in high gear.

Here's a website that helped me tremendously.

http://www.isma.org.uk/stressnw/parasymp01.htm

Stick with us, everyone here is awesome at helping. Praying for you!!!

[Gena]

I was tested, tilt table, down at the MVP center in Ala, back in 90 and at that time it came up blunted, whatever that means,, but Dr. said I  had, at that time, a mild form. Seems I go through different symptoms that last for months then something

Hi there and welcome! I have MVP, fibro and POTS as well. I also went to the MVP center in Alabama and was told I have blunted BP results on the TTT. I was so filled with anxiety though, that my BP and HR were very high during test and basically stayed that way.

I have many of the same symptoms, although my tachy is more of a problem at night while I'm sleeping or when I get up in the middle of the night to go to the bathroom. Heat does me in too though.

Just FYI, Dr. Sawyer at the MVP clinic just retired. I don't know if that's who you saw there initially or not.

This forum is great and you'll find a lot of helpful info here.

[mom4cem]

Thanks to you all who replied, you have really made me feel welcome.

Gena, I had blunted results also, did not and still don't really understand what that meant. Dr. Sawyer was my Dr. all these years also, I was sad when she retired. I will be seeing Dr. Watkins the next time I go down.

Thanks for the link Tammy, and to Ernie, LindaJoy and dizzy (and if I missed anyone else) thanks for the replies again!!

[MightyMouse]

Welcome to the forum!

I was wondering if the cardiologist that you're using is a specialist in dysautonomia? If not, you might want to see one; if you do happen to have dysautonmia, there are other treatments that a beta blocker that might help. If you do have dysautonomia, so folks do very poorly on beta blockers and other do pretty nicely. If a betablocker isn't your best treatment, there are many other lines of intervention. See the "what helps" section of the primary DINET site (http://www.dinet.com).

Nina

[mom4cem]

Thanks Nina, I really don't know if how well versed he is in dysautonomia. When I go back to the MVP center, that is where I originally had my tilt test done, I am going to go with my list of questions and hopefully come out with some answers. At least I know the Dr's there are very well up to date on dysautonomia.

[Tate]

Hi!

my name is Tate and I live in Birmingham, AL. I am new here too. I am assuming you are coming to Baptist Montclair to visit with the MVP clinic. While you are here you may want to get an appt. with a cardiologist at UAB's Kirkland Clinic. After 19 years of searching for a diagnosis (I have been dealing with POTS/Neurally Mediated Syncope since age 8) I finally found it through the staff at the Kirkland Clinic and the testing of Dr. Cauglin (he is listed on this site under physicians) from what I understand he pretty much helped to create the Tilt Test...perhaps you could get your results to him for review. Just a thought. I am living proof that a second opinion or in my case 19 years worth!!! Plus, you need warm weather? It is 78 degrees here today!!! I hope you are able to find an answer...I have discovered that finding a reason, a diagnosis after all this time really did help!!

Best Wishes!

Tate

Diagnosed: 2/05

[morgan617]

Welcome, sounds like you've had it all.... as have most of us at one point or another. Hope you enjoy it here and get all the support you need. morgan