mom4cem

Sorry to hear about the end to your good day. I hope you feel better soon.

I can sympathize with your worry. Pheo is rare and if it is, it can be treated and symptoms be resolved.

Did you get a call back from your endo, or did you try to call?

Glad you had a good experience. I love them there... I have MVP too. The way the nurse explained it to me was when you are dehydrated your heart shrinks and the valve flaps, becomes loose and may allow some blood to backflow. The belief is when you are properly hydrated your blood volume is increased and your heart size becomes normal and the floppiness of the valve lessens. It becomes tighter. They also told me that POTS is very similiar and that many that have MVP have POTS and or vice versa. They explained the blood pooling when we stand, why I feel horrible when standing in a warm/hot shower etc.

Did they have the clips on your nose and the mask on your face during the exercise stress test? The last one I had done there was like that.

It's nice to have someone who understands this disorder, even a whole center and that they are available to talk to and be seen at within a reasonable amount of time. I would love to have them up here Till then, I will have to travel when I am able.

Hope the beta blocker helps. The little that they had prescribed me helped. I also do the balancing of the foods, and it has helped also. I do less carbs and practically no sugar and it has helped with my heartrate a bit. These two links might explain it better.

http://www.mvprolapse.com/article_glitch.html

http://www.mvprolapse.com/article_tired.html

HI,

I don't know if this is an option but what about cutting back on the lexapro? Sometimes after going off certain meds and going back on we don't have the same reactions whether good or bad. I take liquid lexapro and that way can really control the amount I take and the amount that works.

That sounds cool, the fair. I like those type of things. Don't get much call for that here in the city of NY,,but love it when I am on vacation to check these things out.

I think you should call your dr. and let him/her know what is going on. They may be able to offer some suggestions.

Good luck with the meds and with the fair.

Dionna,

Can't add much more, but what rotten timing for this to happen. They must have to make some sort of allowance for those who are ill and require special things. I agree if you can get a dr's note that would help.

Good luck

Sorry that everything turned out so vague. Just like the poster before said,,what about IST? It is believed to be another form of dysautonomia. Did they say what rhythm your P waves pointed too?

Hi and welcome.

Flare ups very common. Don't let it get you down. You can get through it.

Hi,

Sorry about the morning you had.

I've been to the Ala center a few times. The don't just go by the tests. They also go by what you say your symptoms are. They know there is more to dysautonomia than just a TTT. The first time I had it done, and the only time for that fact, it came back blunted. Between the symptoms etc, they diagnosed me. They diagnosed me with MVP and dysautonomia, and have treated me as that over the years.

I don't go down there every year as I live in NY and it is quite a trip, but the Dr. is always available by e-mail or phone. The nurses are very good also.

Is there anyone you can get to go along with you on the ride?

Hope all goes well tomorrow.

P.s. as for the blind date bit,,yes,,very expensive and tiring blind dates.

Congrats and it was nice to hear from you again!... Best wishes...

Sunfish,

Hope you you get out of that hospital real soon....Lots of hugs and fresh water your way(have to keep in line with Mighty's posts..lol

In my last pregnancy almost 5 years ago I took my beta blocker daily and klonopin as needed I was on bed rest from Mother's Day till mid July, so then I needed injections to speed up his lung maturity in case I went into labor. I worked for an ob/gyn for a number of years. There were many meds, though I don't remember them, that patients took while pregnant since the Dr's felt the benefits to the mother, who they needed to either remain calm, keep their blood pressure under control, control the blood sugar,,etc, was important for the Mom and the baby. That is the way my Dr. felt for me also, that they needed me to be in as a good a state as I could be so it would be beneficial to both me and the baby.

My little guy came a week early while I was back to work. He is a little shorter than my other two, but he seems to take after my hubby who has shorter legs but a longer torso and I am the opposite. My other two kids have longer legs. Believe me, he is as active if not more so than my other two

I bet you and the baby will do just great. Just remember your limits and keep your OB informed of any changes so they can keep a close eye on you both.

Epinephrine from the novacaine just sets me off with skipped beats and palpations tachycardia.

I've never had a problem with the injection without the epi in it. It wears off faster so they may have to numb you more often, but I have had no reaction from it.

I don't like going either but I take a little relaxer before I go.

Good luck.

Glad to hear you are having good times! Yes enjoy them but remember not to overdo it. It is easy to get carried away when we feel well.

I hope this is just the beginning of what is to come

Ouch, sorry to hear about your troubles. Thank goodness it was caught before it spread. Sending you well wishes and speedy healing.

Hi,

I sometimes react to stimulants negatively and sometimes I can handle them and it relieves certain things for a while.

I too, when I do too much, though too much could just be pulling a few weeds I can start to feel wired, hyped up and then I feel like a big rush and tachy will soon be coming. I guess I still have not learned when to stop, when enough is enough without pushing myself over the edge.

What about Vanderbilt in Tennessee? I know they have and/or do research and studies.

The Alabama center if it is the Autonomic Testing Center/MVP center of Alabama, I had my testing there but paid for it and for my travel. I don't know that they do any studies. Possibly it is a hospital in Alabama that does that. I could be wrong.

Hope you find something.

Welcome, I'm sure you will find much support on this forum.

Just turned 40 and still kicking with dysautonomia

Thanks Emily and the rest of you all!

Emily, I really like Psych too. I get everything ready to start watching Monk then run right over into Psych. Two of my favorites!

I did the 24hr urine and the plasma test for pheo. My urine was negative. The blood showed just a pinch above normal on normetanephrines but my cardio and endo said that can happen just from the needle prick, making you nervous etc.

I've taken prednisone and felt pretty good while taking it but then I had a crash of severe anxiety/panic, racing heart etc. Since then I have not gone back on it when my allergist has suggested it.

There are so many unknown things out there, nothing is impossible

Hi,

I've been taking a very small, pratically infant size dose of lexapro. You can only chop up the pill so small before it crumbles. I am taking about 2.5mg..give or take since I can't cut the pill evenly without pieces falling off. The 10mg was too strong and the 5mg also gave me so yucky side effects. I have found that the 2.5 has been doing it,,or at least I think it has.

My dr. gave me the oral solution to take. It is 5mg/5ml He does not know anything about taking the oral solution. I have not changed over to the oral solution yet but want to since the pills are so tough to get the right dose. The pharmacist would not give out much specific info since the recommended amt is 5mg., and it is the dr. who is telling me to take less.

Has or does anyone take such a small dose of ssri and anyone using an oral solution?

As always thanks

An event monitor maybe a good idea if not done so already. You can hit the button when you feel the symptoms and it will capture the ekg. That may help to eliminate anything else being wrong.'

Maybe your rhythm is out of whack and you are shooting adrenaline and cortisol earlier than the normal usal 6-8am time when it seems to be at it's highest. I usually experience my tachy when I wake up in the a.m.

Doing anything different prior to bedtime?

I ditto everyone else but had to say I am 40 and still having problems..think that varies for each individual.

I'm the same as OLL. I feel every beat, fast or slow. So I feel 65 as slow and 80 as fast,,forget about once it hits the 90's I feel every single beat and faster,,really forget about it!!