I Know I Haven't Been Around Much

[bttrflyamby1981]

Hi there,

I had a Diagnoses of SVT in December after wearing a 30 day holter monitor. I was also put on Florinef to help control my blood pressure but it was giving me bad side affects. Mainly major head pressure which triggered my migraines.They also increased the Toprol XL to 50 mg. I pushed to get in to see the Dr cause I felt so bad.

So they set an appointment with a different Dr (kidney specialist) I have a TEAM of Dr's and this is one of them. Anyway, my appointment was Friday. I left very upset. He told me that I didn't have SVT and that my blood pressure was normal 88/65 normal? Anyway he told me to tapper off the Florinef and I started too, but the side affects seem to have passed so I'm going to stay on it until I see the EP specialist.

Again they are trying to say anxiety when I feel that this illness is giving me the anxiety, not the other way around. The kidney guy said that there wasn't anything else they can do, no more tests to run. He said sorry and that they just didn't know what was wrong. The Cardio said I didn't have POTS because of the one TTT that came back normal. (almost 2 years ago)

So I guess I'm at the bottom of the roller coaster climbing to the top looking for the answers. I don't know if the EP can help or not? He was one who said he thought I had POTS even with the normal TTT. We'll see what happens I suppose.

Just wanted to stop by...

sending my best.

[Aprilmarie52]

sorry you are going through so much. I would look for a different dr. I dont trust anybody who says that there is nothing else they can do. I hope your visit to the EP goes well and you get some answers.

[Rachel]

Amby,

I'm sorry you're having such a terrible time with your doctors. Did the kidney specialist give a reason when he said that you didn't have SVT? That is really strange to be "undiagnosed" right after being diagnosed with SVT.

I have a friend with blood pressure that is always about 90/65. That is normal for her, but she is also in excellent health. If you are having problems with tachycardia, then a bp of 88/65 is probably not normal. Average bp is 120/70.

I hope that your visit with the EP goes well. When you are there, ask them to run orthostatics. I think this is usually done at EPs offices, but you can ask just in case. Maybe it will show something. Even people with POTS can have good days where they aren't so symptomatic. Once I had my heart rate and blood pressure stay the same when I stood up for orthostatics. But every other time I stood up the rates changed dramatically. I just happened to not be symptomatic that day for some reason.

I hope you get to the top of the rollercoaster soon, that you find some good answers, and that you don't have to go on any loops.

Good luck with everything,

Rachel

[MomtoGiuliana]

I don't think you will get the right answers from anyone other than a specialist. An EP should be able to correctly diagnose you.

Katherine

[Donna F]

Hi

Sorry for what u r going thru, I understand I was diagnosed with everything from major anxiety, depression even bipolar disorder and the whole time it was this. I was diagnosed in Oct from a elec. without having a TTT, and last wk i saw a Dr that specializes in dysa/pots, and has it himself and he is sure i have it as well, and prob have all these yrs i have been misdiagnosed, they did install a pacemaker in Oct. I know how frust it can be however, i do know that my dr said that some TTT may be normal first time as if ur body isnt totally disfunctioning that day or for people like me who have many prb, as well as being chronic, i dont pass out which makes it harder to determine. However, a good doc can read between the lines, if the ep dont work, i went under a list of docs who spec. in this disorder, and found mine in Pen Florida, closest to me, there is a list under the national found. HOpe u get some help, i totally understand

Donna

[Guest tearose]

Welcome back Amby.

Sorry you are at the bottom but keep looking up!!!

You shoudn't put too much into the kidney dr. dx your heart, right??? This is the EP's specialization.

Hang in there and keep trying to get the best team members possible!

You deserve the best. You only have one body.

best regards, tearose

[bttrflyamby1981]

Thanks for your replies.

I have an appointment with the EP Feb 6th. I call in the morning to see if they want me in earlier then this.

I already have another office lined up if things don't go well. Something I was trying to avoid, but if they keep telling me they don't know what's wrong, then I need to move on.

Thanks again,

Amber

[DancingLight]

Amber,

I hope one of these upcoming appts. will bring you answers.

Please, though, don't give up until you have the answers you believe in. I sensed from your last post that if they tell you again it's 'in your head', etc. you won't pursue more help.

It may take a LONG time to find the right doctor, and a lot of tears along the way, but you deserve to have answers and to be treated so that you can have better quality fo life.

It took me many YEARS to find answers and a team of doctors, and we're still searching.

Emily

[bttrflyamby1981]

Sometimes I do in fact want to give up, but I feel so awful that just isn't an option. I brushed it off the first year thinking whatever it was would just go away. Then I lost my insurance when I finally found a Dr. who found possible answers. Now I'm going in reverse. But I'm sure many if not all of you have been there too.

There is just something about the POTS that has me set on this being the diagnoses. It just makes sense. I was so lost and confused and the Dr mentioned POTS so I looked it up and everything just seemed to fit. I have questioned myself though, many times. But then things will happen that make me think....it's GOT to be POTS.

If this next appointment doesn't go well or FEELS worthless (like most of my appointments have felt) then that's ok. I have another office lined up to have a consultation with another EP. I have come to a point that I NEED a diagnoses just to be proved sane! But I won't take just any diagnoses....

When they said I had SVT I thought ok, but there is more going on. I feel I will know in my heart when I have the right diagnoses. Things will make sense, and my questions will be answered.

Thanks for your concern, I'll get over this hill eventually.

Amby

[DancingLight]

Amby,

I ended up at one point seeing a psychiatric nurse practitioner to rule out a psychological basis for my physical problems. She wrote a letter stating that my symptoms were NOT psychological and that helped to have in my file to take to doctor's appts.

I KNEW it wasn't psychological, but after being dismissed so many times I decided it was worth a shot to have an appt. and have it on record that my problems were not psychologically based. I was in therapy at the time, and my therapist suggested it, as she also knew that there was something very wrong going on that the doctors were missing...

Emily

[bttrflyamby1981]

That is a very good point, thanks for your insight.

[Guest tearose]

Just wanted to say I think when we feel weak it is very important NOT to make major decisions. Take your time to decide if the new EP is a good addition to your care team.

I hope they can get you in before next week.

best regards, tearose

[jenwclark]

Sometimes I do in fact want to give up, but I feel so awful that just isn't an option.

I know what you mean! I've tried to give up, but I can only keep it up for a day, or maybe two if I'm really determined. Like you say, it just isn't an option.

I so hope this EP has something helpful for you.

[DancingLight]

QS,

Where have you been?! I've missed you! So glad to see your name pop up! I'm guessing you've been feeling icky and that's why you haven't been around...sorry...

Hugs,

Emily

[jenwclark]

Em,

First it was the holidays, then it was an exhausting trip to see Dr. Grubb, and by the time things got back to normal I was feeling overwhelmed by the board. So, yes, I have been feeling yucky, but only because I've been wearing myself out with important and/or fun things.

Nice to be back.

spike

[DancingLight]

QS,

I hope you had a good/helpful appt. with Dr. Grubb?

Yes, the holidays took a lot of us away from the board! 2007 seems to be off to a bit of a crazy start for sooo many members--(i.e. deep in the POTShole!).

Glad you are back...yes, the board can get a bit overwhelming. I've only been able to post in little bits lately.

Em

[Maxine]

Amby,

My tilt table test was "normal" too in 2001. Then another was taken in 2004----again it was normal. However, I'm on beta blockers, and there is no way I can go off them---I've been on them too long.

Dr. Grubb diagnosed the POTS based on a long history of other symptoms that correlated with POTS.

My heart rate did go over 100 BPM, and my blood pressure dropped more then 30 points, but it was delayed.

I don't pass out either, but I have near syncope all the time. I have terrible orthostatic Intolerance, and my body hates gravity. My heart rate doesn't compensate for my drops in blood pressure at times, and this has been happening more often. I just get tachy whenever---even in my sleep, and even on my beta blockers. So there is not one person on this earth that will tell me I don't have dysautonomia. I also have a lot of the other symptoms that go with POTS.

Dr. Grubb just knows better and has years of experience looking for the ear markers of the different forms of dysautonomia.

Having a "normal" tilt table does not necessarily mean you don't have POTS.

I'm so sorry your dealing with this mess right now----I was in this same mess in 2000/2001 until I found Dr. Grubb who happened to be less then a mile away from my house--- All these Doctors I was going to, some of them on the same hospital campus as Dr. Grubb, and none of them could help me. Some were rude, verbally abusive, or just plain dismissive. However, the neurologist I saw back in 2001 at the same hospital as Dr. Grubb did try to help---he was pretty cool. He could tell things were not right, but it ended up that he couldn't figure it out either. Later another neurologist from the same hospital campus said everything was manifested in my mind---including all the things you see listed on the signature line.

It's really hard finding a good ANS doctor. I wish you the best of luck with your appointment on Feb. 6th.

I'm sorry you had to deal with such a dismissive doctor.

Sending you a Big Hug, and a prayer for getting to the right doctor to take your seriously.

Take care,

Maxine :0)

[bttrflyamby1981]

Thanks for your support

Maxine you made me feel better..thank you

It's easier to deal with when you know your not alone.

I wish I could find a good DR out here.......I'll keep looking.