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bttrflyamby1981
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Hi,

Most of you know how hard I have been trying to get dx. I'm upset with my results. They tell me it's just SVT. That I do NOT have POTS. Not that I want POTS or anything. But the Dr.'s reasoning was I didn't have POTS because my tilt came back negative. HOW MANY have had negative tilts though? I want them to be very sure before they rule it out.

I have more symptoms then I can list and the NP seems to believe that there is more going on then just SVT. Unfortunately, she says she wants me to try an anti anxiety med. I'm not ok with this!! Of course I'm stressed, but because they have run out of options they want to label it anxiety!! This just doesn't sit well with me.

They have increased my dose of betas, and said that if it didn't help bring the Tachy down that she wanted me to go on the anxiety meds. I don't feel right with this though.....should I try it anyway?

Thanks for listening, I'm just curious as to what you guys think.

;) Amber

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My highest BP reading was 122/77 the lowest was 98/55

The lowest heart rate was 94 and the highest was 130

Is that what your asking? The lowest BP reading was after I had the Nitro, as well as the highest BPM.

Thanks

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Guest tearose

Always trust your instincts!

If you do not believe you have been correctly dx then if it were me...I would not do the treatment for a dx I didn't have confidence in.

I am sorry to say...but I would probably be picking myself up and dragging my body to yet another dr for a new look and dx.

I really mean this.

I didn't stop till I went to a major ANS testing facility and asked tons of questions and received respect and tons of answers.

You (none here) never ever asked for these problems and we should feel apologetic about getting answers we can live with!!!

Pick yourself up and and re think a new strategy.

sending you strength...

best regards, tearose

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I agree Tearose,

Something is screaming at me NOOOO to anxiety. I don't know what exactly, because at one time I would have been ok with trying the meds? Something is just telling me this isn't the right step. My gut tells me I don't have the right dx or maybe not ALL of one.

Thanks

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Sometimes anti-anxiety meds are used to treat POTS...So even though your not diagnosed by ur docs as having POTS it could help you out symptom wise...

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Wait, now I am totally confused! Doesn't your increase in HR count as POTS????? You had an increase of more than 30 bpm and were above 120? I'm thinking that is a positive test? Or am I the dumb, dumb? ;)

It sounds like you do have a positive test? Hmmmmmmmmm............

Yes, trust your instincts! Anti-anxiety meds help me with the POTS, BUT I also refused to take thme until we knew WHAT we were treating and why! I totally 'get' your frustration with the well, it's just anxiety diagnosis.

Ugh!

Hugs,

Emily

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My doctor told me that occasinally people do have negative tests and still have the disorder. But your test sure sounds a little postivie to me too. I would definatley get copies of your test results and consult with another doctor. Insurance probably won't pay for the test again so get copies of everything. On the other hand, I have found that anti anxiety meds and anti depressants are very helpful in treatment also. It seems like the drugs are almost standard treament since stress is a major trigger. I hope you are able to find another physician. You may have to take a road trip to a real clinic to get some good help.

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hey increase in heart rate was, i believe, from what i read, AFTER the nitro. this is normal response to any person who is given nitro. the basis for pots diagnosis is upon upright tilt AND sustained during the whole tilt, that the heart rate rises 30 BPM or more. once again, someone could have an overshoot of heart rate at the start of tilt and it could taper off after a minute of standing (go back down) - this is normal and happens in every person when they stand, with an up to 15 beat rise from supine/sitting to standing.

if your HR only increased after the nitro, it sounds like it was a negative tilt, however, people with pots have good days and bad days, and fluctuations in HR from day to day, hour to hour, are typical of the pots patient.

did they do the tilt in the morning or afternoon? that is a biggie into diagnosing pots as most pots patients are typically more symptomatic and present with higher heart rates in the morning hours........this isnt true for every pots patient, but with most i know it is.

good luck. i hope you get some answers.

by the way, dr. low at mayo gave me a bunch of material he had written about pots and said that there seems to be an overlap in some and perhaps even many pots patients with anxiety.....so just throwing that out there.............

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Yes Cardiactec, those were AFTER the Nitro. I only had 18 bpm difference before the nitro. And yes even though I was symptomatic I was having a "good" day. I'm worse now then I was then....about 1 1/2 years ago.

I was on different insurance when I had the TTT done, so not sure if the insurance I have would cover getting one again.

I have copies of my results...I ask for them now ahead of time so they are ready when I go in for follow ups.

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Hi,

I know that if you had those readings without the nitro your tilt would be postive but I am not familiar with the numbers with nitro. It would be a good idea to either have another ttt since you say that you are worse that 1.5 years ago or at least have your result re-interpreted by another specialist.

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Be careful which anti-anxiety meds they want to try you on, as I just saw my EP and he stated that POTS patients typically have difficulties with anti-anxieties as they tend to lower your BP, however, he stated that SSRI's do seem to help in 2/3 of cases. I personally haven't had much luck with any form of medication, but this is just was my EP was explaining to me as he wanted to try me on Zoloft again.

- Tammy

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My EP/Cardio also wanted me to try Zoloft as well....

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Hi Amby

I was diagnosed with POTS just this last fall. However it took about 2 years to finally get diagnosed. I have had a total of 4 tilt tests. My very first test I passed out within minutes of being tilted. It seemed like every test was different. For some tests I was suppose to take my meds, and others they told me not to. It seems like different doctors interpret the findings differently. I was getting to the point that if I had to take another tilt table test, I was going to record all the data myself and refuse to take anymore. The best overall testing was finally done in September. My doctor for this test confirmed the POTS diagnosis, and even appologized for all the other doctors that I had seen. My other doctors had misinterpretted the data, because they were lacking the understanding of POTS.....

Long story short, stick to your gut feelings. I was told my problems were "all in my head", and I knew that those doctors were wrong. Luckily I stuck with it. It gets really hard, and it is easy to loose faith in the medical professionals. Howver, not every doctor is clueless.

Good Luck and keep your chin up!!

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I am pretty new to this forum but not to POTS. Had since 2002. I have had many TTT's. My only positive test was the very first one that I was not on any beta blockers at all. Once put on beta blockers, all my future tests have been negative. Even though you stop those drugs for 24 hours, my cardiologist and EP says it can take much longer for them to clear your body and everyone responds differently to them and you can get false readings. To make a long story short, just because my others tests were negative, I STILL HAVE POTS! Keep on truckin till you find that one true doctor that believes in you and he/she DOES exist out there, you just have to find him/her. I love my doctor and I travel over 8 hrs to see him. His name is dropped a lot on this forum and he takes a long time to see, but he is very worth it. He spent over 2 hours with me on my first appointment, listened to my every word, told me my symptoms before I even said a word. He was God send. He even mailed me a book a few weeks later titled "When Bad Things Happen to Good People". Research long and hard. I did and I found the one.

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I have no idea what I FEEL anymore. I don't even know if I think it's POTS anymore. I just know that I'm worse when I stand up. I'm symptomatic if I'm standing period..all the time. I'm usually fine sitting. Of course sometimes I do feel a little icky even when sitting.

I have felt like just giving up and letting them do whatever.

Thanks for answering my post

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Well, icky is icky and I hope you can get help. SVT can be awful. There are different kinds (different parts of the conduction system) and the symptoms can vary but be disabling nevertheless. My two friends who didn't have POTS were both pretty disabled for years.

In the beginning for me, they only diagnosed anxiety and tried to abort the episodes with Ativan. It would knock me out and the heart would be slower for about 36 hours and then it would speed up with a vengeance -- tachy plus all sorts of weird tremors, insomnia, etc. I finally only took Ativan when I had to see a new doctor (because of the stress), but even so, I had the rebound worsening.

Then I read about the rebound issues with all benzodiazepenes and decided not to take it, but just to get stressed at doctor visits and not have side-effects later. Eventually I was put on the BB which is closer to my real need.

Amby, SVT is something even if you don't have the official definition of POTS. I hope you find someone who will listen, pay attention and really do some detective work with you.

OLL

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That does indeed look like a negative test but I have a few questions.

Were you on any medicines when you had the TTT done?

And if not, how long were you off the meds before you had the test?

It may not be POTS, but just b/c you don't have POTS doesn't mean it's all in your head either. Have you looked into things like Chronic Fatigue Syndrome, et al, that have very similar symptoms to POTS?

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you don't have to have sustained tachycardia throughout the whole test. I get spikes of it when I first stand, then my hr will slow a bit, then spike repeatedly until I pass out.

I'm just wondering if they thought it was negative because you didn't lose consciousness- osme medics define a tilt in those terms.

I think it sounds like you had a positive test, even with GTN, although your bp didn't drop very much.

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I had been on Propranolol before the test....they stopped it because it was causing me to have low BP. I don't recall if this is when they put me on Toprol Xl at the time? My Nero was changing my meds trying to treat my migraines. The Cardio took me off of them because they were messing with my BP.

So to answer the question if I was on meds at the time of the test, I don't know. It was a roller coaster time with meds. I know they took me off meds before a test but I don't remember what one it was for. It very well could have been for the Tilt.

These doc's that I have don't answer my questions with straight answers....I have asked about CFS and wasn't answered. But I asked about POTS at the same time. That's when the NP said that the doc said no I didn't have POTS because my tilt was neg. I'm just confused because he had ref me to a EP and this doc, even though I had a neg tilt was "treating" me for POTS.

BTW most if not ALL my symptoms are when I'm standing. I'm fine sitting....unless I'm having a "bad' day.

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I have POTs and anxiety which was brought on by the POTs. I take florinef and Zoloft. I would see another dr and have them retest you. I was not diagnosed through a TTT. I was diagnosed based on 24 hour urine collection/analysis, my cardio took my bp laying, sitting and standing quite a few times and bloodwork, so I dont have any advice as far as that goes. Good luck!

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have they done a holter monitor on you? this would be a good way to get a general idea of what you heart rates typically are throughout a 24 hour period. 24 hour recordings of HR along with a journal indicating when you are standing or sitting/lying down might yield more info than a 10-20 minute TTT, especially if you were having a "good day" symptomatically when you had the tilt......

just a suggestion...

i know my doc didnt do a tilt on me until AFTER they had done a holter showing a lot of tachy throughout the day, along with a little journal i gave them as to what i was doing throughout the day (which striked suspicion in their mind of POTS considering the activities i was doing mostly included standing positions). when i wrote in the journal that i was "lying down" or "sitting watching tv" it tended to correlate more with the slower rates on the monitor, as opposed to the faster rates they saw when i recorded in the journal that i was standing, "washing dishes", "doing laundry", etc............

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Yes, I've had 3 holter monitors. I don't have the results from the last one however? I guess they forgot to copy it with the rest of the stuff I asked for? I didn't even realize it until just now. I just got done with the 30 day event monitor a couple of weeks ago.

I think my best bet is to find a dr who is more familiar in this area. The doc I have now ref me to the EP specialist for further care, but I went back to him because of a communication problem with the EP. At this point though I think I would rather deal with the communication barrier.

I told the NP at the last visit that it was fine that I don't have POTS but I felt that I had something similar. She agrees more is going on but then she said she wanted to do the anxiety med. [shrugs shoulders]

The EP that I had been ref to put me on Midodrine and said that later if need be he would put me on Florinef to raise my BP. I didn't give the Midodrine even 24 hours though, so I'm wondering if I would have given it more of a chance then I wouldn't be having issues right now. It made me feel very wired and it scared me so I was afraid to take the second dose. The Toprol also has side affects though but passes after awhile, so I was thinking the Midodrine WAS the way to go?

Thanks for all of your opinions...you ALL have been a big help.

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