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H1! anyone taken wellbutrin and found it helpful for POTS symptoms? Susan

Has anybody ever tried this, felt like it worked the first time or two, then it just stopped working? How wierd. Thanks. Susan

Did anybody have worse fatigue when staring a ssri. I was started on cymbalta and was going backward for four days so I stopped. Was this the right thing to do. I though I was getting worse. Or is this what everyone goes through and then it gets better. Susan

Who has been diagnosed with this form of pots and what meds are you findingt best help control symptoms? Thanks Susan

This is a stupid question but shouldn't there be a way to give us more blood volume or keep the blood up near our chest/hearts besides florinef?

Susan

My heart flip flops up and down like a tennis ball in my chest. And the adrenaline is running high and I am so shaky and nervous I'm climbing the walls. Anyone else have this feeling and what have you taken that helps. Thanks Susan

Hi I tried clonodine last night and it has cut down on the trembly feelings of hyperadrenergenic POTS. That's good! It does drop your blood pressure quite a bit. My question is do they ever use drugs that raise your blood pressure when standing like mestinon with clonodine or would that make you shaky and tremby again. Thanks for any input. Susan

This is for the person who pm me about the nausea med. I accidently erased my messages. It is zofran and I think that's the same one you said you had.....Sorry.

Those blood pressures are all in the normal range and good. Hope you do great! Susan

Hi Does anyone ever have this sensation, it's hard to describe... where you heart feels like it's beating not quite rythmically and that it almost makes your body rock back and forth a little.. Very wierd and scary feeling. I was just wondering if I was alone in feeling this. Susan

Hi! Anyone used the clonodine patch to help calm down tremory feelings w/ hyperadrenergenic pots?

Susan

Hi I was just given cymbalta and have taken it for 3 days to supposedly help with these tremors. So far nothing but feeling wasted and nauseous. And still tremulous! Anyone have any ideas? Is this supposed to help after you've been on it awhile or if I think I'm feeling worse should I stop?

Also are the shaky/trembly feeling from to many catecholemines circulating. Dr. G did a catecholemine test but I have not heard the results yet. Susan

hI!

I READ ABOUT THIS MED AS BEING AN ALTERNATIVE TO THE VOLUME BOOSTER FLORINEF AND WAS WONDERING IF ANYONE HAD EVER BE PRESCRIBED THIS. IT SUPPOSEDLY HAS TO BE TAKEN BY A SHOT.

ANYONE HEARD OF WHETHER IT IS EFFECTIVE? EVERYONE SEEMS TO BE ON FLORINEF. SUSAN

I'm on .1mg and have had no side effects too. Good luck! Susan

hI

I've been experiencing the same thing and it's scary. I pm'd you with my number. Let me know if you need to talk or didn't get the PM.

Susan

Hi! Of the people who are on florinef what dosage are you on? I take 1 tablet, half in the morning and half at night. Is there a better way to build up blood volume. Does anyone take just at night or just in the morning? How do the doctors decide what the right amount is? Thanks for any replies. Susan

I've taken klonopin for a number of years with no bad effects. You could start there. Good Luck.

Susan

Does anyone know of a pots doctor in the denver metro area? My current doctor is on medical leave and I've had a significant relapse. Thanks Susan

My daughter had that a lot at first....seems lots better now. I think that her meds really helped: increased blood volume and vasoconstriction. Good luck!

what meds is your daughter on? Susan

Hi,

YES!!! I have incredible difficulty breathing when sitting up or standing. I have had a gazillion pulmonary tests that the pulmonologists agree that it is the POTS, but they don't understand what is causing it. They say that my lung capacity is low, and that my ability to inhale and exhale (called MIP and MEP) is at about half of what it should be.

Maybe some sort of nerve damage, but because it is better lying down, I would think that it is more of a mechanical difficulty...

I have found that an abdominal binder that squeezes my middle helps, for some weird reason...

You are not alone! Hang in,

Diana

An abdominal binder. Where did you get that? Susan

Cymbalta is dual action, SSRI and norepinephrine reuptake inhibitor. Wellbutrin is a norepinephrine reuptake inhibitor. So the Cymbalta functions like Wellbutrin + an SSRI. Cymbalta is a new drug, so depending on when Dr. Grubb mentioned trying Wellbutrin, it may have been before the availability of Cymbalta.

Unfortunately, finding the best treatment for a particular person with dysautonomia often takes trial and error. You may have to live through some of the "errors" in order to find help.

However, each step you take brings you closer. Just keep going.

Does norepinephrine reuptake inhibitor mean it will help get rid of the tremory feelings? Susan

Hang in there. I had a long stretch of feeling good at one point (years) but am now am in a low point again. I'm hanging on to knowing that I was in a low point before and climbed out where life was reasonable. We all understand what everyone with this illness goes through. Nobody else gets it. Sending lots of prayers that the new med will work out well. Susan

Hi Does anyone know if there is any med that helps with chest tighness and being short of breath when upright? Thanks Susan

Hi

My Dr. Has had me try proamatrine. The first time I took it I thought I felt better, but it turns out I can't even take 1/4 of the lowest dose without feeling worse. Amyone had this response? I thought this was supposed to be a vasoconstrictor and pump blood up from legs but it just seems to lower BP.

Susan

Hi, around the same time I had the first symptoms of POTS I came down with IBS. Is it related anyhow? I must have jinxed myself the other day, because I haven't had many problems with the IBS. Right now I can't move, I am hunched over and in PAIN!! Is there anything that helps? I had a RX for Protonix, but it prob expired by now. I thought you were supposed to feel better after using the bathroom...?..I don't. Ahhh, atleast Idol is on to keep me distracted...sort of.

The two are related. I was constipated when I was better and now that I have relapsed I have lost 10 lbs in a month and a half and can't stop going to the bathroom. My gasterenterologist said this is a classic symptom. I had pain for a while a few weeks ago and now thankfully it's gone. yours will too! Try eating more frequent small meals. Susan

Hi! I'm going to be seeing Dr. G for the first time. What should I bring with me besides a list of questions. My tilt table test and 48hr holter moniter have been sent. Does He do a physical exam and then try to figure out what meds might address your symptoms? Also can he figure out without a catecholemine test which my doctors haven't done whether you have the hyperadrenergenic pots? Mast cell activation? I guess since he's so experienced he knows what usually works best. Does he followup with any questions your primary care doctor may have. Any info would be appreciated. What sorts of info should I have for him besides the above. Will he recommend additional tests? Thanks!