My Ttt Experience

[Tessa]

I promised to share my TTT experience with you and thanks God here I am.

My test was performed at the Hospital, by the Cardiologist who fit me in + 2 nurses.

All the usual monitors were fitted, plus a IV (for a saline solution).

They strapped me onto the table securely and had me rest on the table for about 10 minutes to monitor my vitals (no Valsava Manuever and no checking of the carotid sinus).

My bp was 120/60 and my heart rate around 60

After around 10 minutes, the nurses tilted me quickly up.

I really felt fine, as my feet were supported by the small shelf and my body supported by the table.

My bp went to 110/60 and my heart rate to around 75

After around 10 minutes, I was starting to feel dizzy and tired. My heart rate was increasing step by step from 80 to 90 and 95 but not the rest of symptoms I usually feel... The cardiologist seemed to be boried... He said it was best to try the drug instead of waiting.

I had nitroglicerine under my tongue.

Then I started feeling more dizzy (though no chest pain), breathless...

I told them I was dizzy and confused...

I looked to the monitor. My bp was lowering 100/50 and my heart rate was increasing 95, 100, 110, 115, 125

When it was 125, I noticed I was going to faint. I said: "I am going to pass out". I heard the nurse asking if they tilted me back down and I said "yes".

That?s the last thing I remember. I had a syncope.

(I have been told afterwards by my husband that the cardiologist said that my bp was 60/20)

When I started to regain some consciousness, I noticed that they were very worried, asking what to do next. I was horizontal, with my legs up for a while but did not regain consciousness by my own. They were talking loud to me asking me to keep my eyes open... It took a while to recover. I felt I was going to pass out again, then recover, pass out... It was a scary experience.

when I was feeling better, the cardiologist asked me to sit and then to stand up and move... They started taking the EKG off.

Then I felt dizzy again. My bp and heart rate was going crazy all the time, up and down. They stared at the monitor and asked him what to do... He asked me to lay down again...

I was not easy to recover. I was still feeling dizzy when he told me to leave home and recommended to drink plenty of fluids and increase salt intake.

Remember I told you he is not familiar with POTS. (he never heard about it until I mentioned it at our first app).

In fact, it does not seem he was very familiar with a Tilt Table Test. I do not think he should have allowed the test so far and I also think he should have given me something to increase my blood pressure while being unconscious

Then he said that what I had was vasovagal syncope. I disagree. (he does not know about POTS and thinks that all faintings are the same: vasovagal. It is going to be difficult to let him know that POTS is different... But he is the only Cardiologist who is willing to help and I have no other choice right now).

Don?t you think it is NOT a vasovagal syncope but POTS?

I have been ill since then. Exhausted/tired, dizzy, with chest discomfort, confused...

My GP wanted me going to the ER but I refused. I am slightly better today. She said I should wait until the app. with the cardiologist next Tuesday, before going back to work.

I think that the process of recovery is slow but I am going better. Of course, my body went through a terrible experience (bp 60/20!)

Do you had such a low blood pressure?

My husband and me have been talking with a nurse (at another hospital today) and when I mentioned my bp (60/20) at the TTT, he looked up, surprised and said: "oops, but that is nearly being in shock!"

I wanted to share this with you and read your comments about it.

I am sure that you wonder how he allowed me to faint, as he could have stopped the test before. (I think he should, but he has not a large experience, furthermore,

It is scary (bp 60/20)...

I will ask for the whole data of the test on Tuesday, in the event that I am able to use them someday with another Cardiologist... I also want to know the exact heart rate I had reached when passing out. (as the last lecture I saw seconds before fainting was 125 bmp and it was increasing)...

Thank you all for your support,

Take care,

Love

Tessa

PS: What really scares me is that I did not recover quickly after tilted back horizontal. Is it usual?

BTW, the rest of that day, my heart rate was around 100 bpm at rest (horizontal)... No doubt I was feeling exhausted... After taking my beta blocker, the heart rate has gone down again and remains at 60 bpm

[bttrflyamby1981]

Thanks for giving us the update....

My first TTT was negative so I really don't have anything to offer comparing wise. Part of me is worried I'll get another negative result as well.

I'm sorry you had to deal with fainting and the slow recovery. (((HUGS)))

I'm interested in what others view from the test too. Glad it's done and over with for you!

[MomtoGiuliana]

That sounds like a terrible experience. Fortunately it is over and the data can be used to properly diagnose and hopefully treat you. I think many of us have felt worse after a TTT. I was feeling terrible anyway at the time and confined to a wheelchair. I don't remember feeling a lot worse after the TTT. I certainly did not feel better either.

I don't know about that low bp reading. In my TTT my hr and bp both went up and then my bp started to dip a little but never went too low. I have never fainted with POTS. Some of us with POTS experience syncope and others don't.

Hope you feel better soon

...and the test can be evaluated by an expert who can answer your concerns about bp.

take care,

Katherine

[pat57]

the HR has to go down for vasovagel, its very possible you did not know that it dropped because it can happen fast and that's when "your" lights will go out too. Ask for the report. The hosp. or doctor- will provide it.

[cardiactec]

sorry you're feel lousy.....i hope you feel better...

the meds they give during tilt there is large debate over from cardiologist to cardiologist - the meds they use can actually cause a lot of false positives. vasovagal can be instigated by med injection, but whether or vasovagal can occur in ANYONE with med injection or with those who are JUST prone to or with an underlying autonomic dysfunction is not really 100% known.

i have been told anyway by my cardio, that vitals BEFORE drug administration pre-tilt and tilt is more reliable as to what is going on (especially with pots anyway) than them trying to provoke a problem to occur with BP and/or HR (such as with med injection).....

...so if your HR was 60 supine and they tilted you and it went to 95 within 10 minutes, than that is positive for pots (that is, if the definition for pots is a HR increase of 30 beats or more within ten minutes OR a hr that reaches 120, which i think it is the correct criteria?)....

.....your HR increase to 125 (and perhaps higher) was most likely a response to the med injection, and your BP fallout probably the same. whether or not it was a false positive and your HR and BP responses were more or less from the med or your body not handling upright posture well, there is large debate.

nitro is a vasodilator and if given to anyone standing, especially if your BP is low to begin with (under 100) it can cause anyone to pass out and their BP to drop. generally if your BP is under 100, nitro is never supposed to be given anyway, especially if the patient is standing. what was your BP standing BEFORE they gave you the med?

i know my experience with my TILT was that supine my HR was 100, and became 190+ standing without any med injection. the doc wouldnt inject any med with me upright cuz my HR was so high all by itself, without any meds. he tilted me down and THEN gave me the med while supine, after my HR dropped. my HR rose after med injection, while supine, from 95 to 142 and BP only dropped to about 88/60 from 105/80. standing, without meds, my BP was around 90/50.

i hope you get the answers you're looking for and that you start to feel better soon!

[runningshoe]

Hi,

Where was this done? I am so surprised they let you pass out. I had mine done at an excellent teaching hospital and they assured me they would pull me out of the tilt before I fainted. Plus they did not use any meds. 10 minutes into the test they stopped because I had met the criteria. I can't believe they put you through that. I felt crappy after my test and it wasn't even that bad. After any major pots episode or a syncope your body will need time to recover. Rest rest rest. Good luck and hang in there!

[lthomas521]

I'm lucky. I get solidly abnormal pulse readings on the TTT, without syncope. Okay, maybe I get a little vague.

[dizzygirl]

ewwwwwwwww that sounds like a horrible experience.. ttt's i think are equivelant to human torture chambers for us pots people.. they make us all so sick! and recovery is different from person to person but they generally take some time..

take it easy until you start feeling back to your normal baseline...

i have had BP's that low many times both with a tt and w/o a ttt..(after faints) um during on eparticular ttt before i was given meds.. my BP had a large drop.. i went from being 140/something to being like 61/53 just like that..

ttt's are no fun.. can you get a copy of the tt results.. and statr maybe looking into getting into one of the pots experts..who maybe can offer you some help? acuarte help i mean?

oh and i would think a hr of 60 going to 95 would qualify you as pots... but again an expoerienced doc is so much better then one who isnt familar with our disorder...

take tessa hope you feel better

[corina]

hi tessa,

i am sorry that you had such a bad experience having a ttt. although i didn?t pass out (eventhough my numbers told the nurses and doctor i would because they kep asking if i was going to ) i felt very bad which lasted for several days. i brought my bb's with me to take after the ttt to slow down my hr which went up to about 200. i didn't have any meds or nytro or whatsoever during the ttt so the bp and hr measured was just what happens on a every day base (while not being on any medication).

i can't say anything about whether or not you could have vasovagal syncope as i'm not quite sure what that is.

hope you will feel better soon and that you will get the answers you're looking for!

corina

[DavidH]

My TTT was much like yours in the time it took for me to recover. My Cardiologist did not allow me to pass out. I was also dx with NCS. really did not matter what the dx was just happy to know something.

[MightyMouse]

Sounds like my tilt readings with the exception of the nitro--I didn't have any meds infused. Just some saline post TTT to help me perk back up. My friend brought me a HUGE travel mug of coffee for right after the test, and then walked me to breakfast and drove me home after about an hour of sitting and trying to recover. She then brought the car around for me so I only had to walk a little to the car.

Nina

[Tessa]

Thank you all for your answers and support. It has been a hard time, but it is over now and I am looking forward to having a treatment that fits my problem...

Amby, I would say that fainting was not so bad... The scary part was when I noticed that It had been so difficult to regain consciousness even though I was tilted down... And of course, the blood pressure I had when fainting...

Katherine, thank you for caring about me. We will see the Cardiologist?s comments on Tuesday... I hope he has done some research by then...

I think it is POTS or Neurally Mediated Hypotension, pat57, though of course, I will look into the data (if I can get it).

Cardiactec, your words have been helpful. I also thought it was important to carry the test without drug first for at least 35 minutes, but he had no intention to wait such a long time, even though my hr was slowly increasing while standing...

Maybe the reaction of hr after the nitro, was just a speeding of my own symptoms? No idea.

I cannot remember my bp standing before they gave me the nitroglicerine. I?ll try to get the full report with the data of the monitors... and will share them.

It is al so confusing... I hope my TTT will be of some help... I do not want to do it again. I am aware that my cardiologist has no idea about POTS and that he believes that passing out is always due to a vasovagal syncope, but I will have to explain it to him as best as I can and try to get to an appropriated treatment. At least, he seems to be willing to help...

Oh, Lina, I am afraid it was due to him not knowing about POTS, otherwise I would not have been allowed to faint... I think they wanted to see my reaction. After my test, other cardiologist came to talk about it with him and they were surprised about it being positive. I noticed they were sorry for not having been there to witness me passing out...

It was carried at an excellent hospital and with the best equipment, but without knowledge about POTS.

lthomas521, glad that you do not experience a similar reaction.

You are right, dizzygirl, I felt as if I were in a torture chamber. Furthermore, everyone wanted to look at me to witness it.

Yes, TTT?s are not fun. I hope to get a copy of my results and data, but I am afraid I have no other option than the Cardiologist who run the TTT test... At least up to now...

I have been unable to find an expert in POTS in Spain...

Thank you for your support

Thank you for sharing your experience, Corina.

DavidH, what?s the difference between POTS and NMS? I cannot determine it. It seems so similar to me...

Nina, thank you for your comments.

They should find a different way to check our health problems. Some people can feel fine doing a TTT, but others suffer a lot.

My Cardiologist said I would feel bad for the rest of the day, but he never mentioned I would feel so bad for a whole week... He is not aware of all the problems that POTS can cause.

On our first app. he told me that fainting was not a serious condition, no discapacity and that it can be treated or avoided. He also said that POTS was not known in SPain, that the word used was Vasovagal Syncope instead of POTS... On the second app. .he mentioned the word POTS several times, and I think he had been reading about it.

On the day of my TTT I gave him a translation of a full report issued by Dr. Grubb on POTS (well, my husband gave it to him after my TTT, because I was unable to talk and concentrate)...

On Tuesday (27th) I hope he has read the report...

I?ll keep you informed.

Thank you for all your contributions, for sharing your experiences, for your support and help and for giving me hope.

Take care,

Love,

Tessa

[pat57]

I could be wrong too- tess. I wrote vasovagal but in my head that was NCS. NCS is my diagnosis. SOOOOO I'll look around too for clarification.

[Rachel]

Hi Tessa,

I'm a bit late to this post, but I did still want to reply.

Thank you for sharing your experience with all of us. TTTs can be hard, but I'm glad it's over for you!

Vasovagal Syncope is the same as Neurally Mediated Hypotension (NMH) and Neuro Cardiogenic Syncope (NCS). And many specialists say that it is possible to have both. So it could be that you do have both. With NMH/NCS there is a drop in blood pressure that causes syncope/near syncope. And with POTS there is a rise in heart rate of 30bpm or more.

Hopefully you can get your tests results and do some research on the internet this weekend. Then you can show up well prepared for your cardiologist visit next week. Let us know how that goes!

Wishing you all the best,

Rachel

[Tessa]

Thank you Pat57... Less confused now.

I did not know that it was possible to have both Vasovagal and NMH, Rachel. Thank you for telling me. But what about POTS? I will surf the net for more information. I hope I can get enough info. to be prepared for the app.

Thank you for your information,

Love,

Tessa

[pat57]

this is a really good site. shows HR, EKG and BP printouts for the various conditions.

http://www.nymc.edu/fhp/centers/syncope/ac...and_syncope.htm

[Tessa]

this is a really good site. shows HR, EKG and BP printouts for the various conditions.

http://www.nymc.edu/fhp/centers/syncope/ac...and_syncope.htm

Thank you Pat57

It saves me a lot of surfing

Love,

Tessa

[pat57]

lol, saves you the surfing but not the reading.

I doubt that I could retain much. Its alot, and some is techinical, but I think it is there.

[Tessa]

yes a lot to read.

[yogini]

Hi Tessa,

Your experience sounds horrible, but unfortunately not that unusal. I went through something similar, although luckily they didn't have to administer drugs. I couldn't get up after the TTT. They administered IV by rapid infusion and that helped a lot. I agree that it's miserable, but the good part about it is that it's over now and you finally have a diagnosis!!

I am surprised that they allowed your cardio to administer the TTT if he wasn't familar with the test or with POTS! Were you on beta blockers when you took the test, because this would have affected your results.

-Rita

[Guest tearose]

Tessa, I would be sure to never let them give you any drugs if and when there is another TTT!!!

I just learned, last week, from my recent trip to Mayo that the neurologists don't usually do the additional drugs during a TTT, it is when the cardiologists do a TTT they like to use drugs. I wonder if this is true at other places.

best regards, tearose

[Tessa]

Thank you for your answers, Rita & Tearose.

I was having a saline solution through IV by that was obviously not enough. In relation with having a diagnosis it is the same cardiologist who carried out the test who has to determine the dx...

After the TTT he was still saying it was a vasovagal syncope. My husband gave him a translation of Dr. Grubb?s report about Dysautonomia... Let?s hope he has read it.

Rita, not that he was allowed to carry it out, it was him who decided doing it. (And the first cardiologist willing to help, even though having no idea about POTS)... I had no other option.

Following the decision we took on our last app. with him, I stopped the beta blocker 48 hours before the test. (First he said not to stop it, but when I told him I would rather prefer to stop it, he agreed).

Tearose, the experience has showed us (my husband and me) that not only we would be sure never to let them give me any drug during another TTT, but also to be aware of the drugs they prescribe or give me (Always). Imagine my possible reaction to a similar drug...

Now we understand what happened to me in 1998. I had a terrible experience.

Having shoulder pain for a few months, the specialist decided it would be best to try a different drug. He asked if I had any allergy to drugs (which I did not - at least that?s what we thought) and without any further information, he inyected a drug into the left part of my neck (not sure how to explain the area)... It did not hurt, but we were surprised.

After the inyection he added that it was a drug to avoid the pain and heal the area... He asked me to visit the information desk of the Hospital and ask for another app. with him.

We went to the information desk. Many people were waiting for their turn, so we did the same.

Suddenly, I started feelling a strong chest pain, my heart raced and I was feeling dizzy... I passed out.

They rushed me to the ER and my husband mentioned the inyection. The specialist was informed and he rushed to the ER. According to my husband, he seemed to be very worried about me.

When I woke up, I was horizontal (in bed) at the ER... They had no idea what had happened, though I was said that it could have been an allergic reaction.

Now I think I had a similar reaction to it than the one I had at the TTT.

The report of the 1998 syncope seems to be changed afterwards... I think that the bp written on it has been written twice, on the same figure... You know what I mean... I think I had an extremely low bp when getting into the ER, but that they wrote another figure above it...

No matter why they did it (though I can imagine), the important part of it is that we have to be very cautious with all the drugs. I can have a serious reaction.

Love,

Tessa.

[juliegee]

Hi Tessa,

I know I'm jumping in here late, but I do have a few comments. POTS occurs when your HR goes up at least 30 beats in the first 10 minutes. If your HR got up to 30 beats higher at 11 or 12 minutes, technically, you DO NOT have POTS. Examine your print out of you have one and determine your own DX. Vasovagal syncope or NMH often occurs with POTS. But, not always.

My son had his TTT at Johns Hopkins with an antroduodenal manometry probe down his nostril, back of his throat, into his tum and small bowel. Can you imagine? (He was in the midst of GI motility testing and his doctor was trying to relate the two- GI motility problems and orthostatic intolerances.) His HR got to 139- 14 minutes into the testing. He is NOT DXed with POTS. At 34 minutes. he had his BP drop from 120/80 to 25/0. He vomited (with the probe still in place) and experienced what they called pre-syncope. So, even with that low of a BP, he didn't actually faint. He is DXed with NMH or vasovagal syncope. It is very closely related to POTS. Many symptoms and treatments are the same.

At Hopkins, they very quicly forced 2 full bags of IV fluids into his IV immediately after bringing down the tilt. When we saw him in the recovery room, he was still a bit nauseous, but basically OK because of the fluids. I can't believe they just told you to drink alot. OMG! A few bags of fluid would have done wonders for you at that point.

Also, I hate that you were given meds so soon into your test. In a good test, they wait 45 minutes to see if your BP will drop naturally. At 45 mins, they usually administer drugs through your IV to see if they can invoke symptoms. I feel like you weren't given much of a chance to let your symptoms play out the way they do every day.

Excuse all of my ramblings, Tessa. I just wanted to compare your experience to Mack's because his was done by experienced professionals that were looking for POTS. My son takes 3 Thermotabs, .2 mg of florinef, 8mg of potassium, and 15 mg of lexapro daily and he is basically normal on that regimen.

I hope whatever regimen they put you on helps. All the best to you.

Hugs-

Julie

[cardiactec]

"Also, I hate that you were given meds so soon into your test. In a good test, they wait 45 minutes to see if your BP will drop naturally. At 45 mins, they usually administer drugs through your IV to see if they can invoke symptoms. I feel like you weren't given much of a chance to let your symptoms play out the way they do every day. " <--

i COMPLETELY agree to the above, what julie said. i think it's ridiculous that they started to shove IV meds at you right after the 10 minute mark of being upright. my tilt, standing, was for about 30 minutes, the doc went that long to see if my BP would start to plummit. some docs go longer, but because my HR was 200, he didnt want me to stay upright any longer than 30 mins.....

julie, did they find any correlation with the gastric motility <manometry> and orthostasis on your son? man, i cant imagine going through all of what your son went through! the tilt is bad enough let alone and then having to have a tube down your nose and into your tummy all at the same time! rough!

[juliegee]

julie, did they find any correlation with the gastric motility <manometry> and orthostasis on your son? man, i cant imagine going through all of what your son went through! the tilt is bad enough let alone and then having to have a tube down your nose and into your tummy all at the same time! rough!

Yep. There was a strong correlation between his GI motility problems and his OI. His manometry went wacko during the pre-syncope- as evidenced by the vomiting episode. Mack's pediatric motility specialist at Hopkins is Dr. Anil Darbari. To my knowldege, he is the only one who does both tests at the same time. The last time I checked with him, he had found several dozen kids with the same correlation. He works closely with Dr. Peter Rowe. Dr. Darbari was able to say with certainty that Mack's GI symptoms (reflux, nausea, vomiting, early satiety, huge weight loss) were caused by an autonomic neuropathy via his OI. And, now that his OI is better controlled, his GI symptoms are improving quite a bit. He's taking less GI meds and is able to eat better and better every day.

The intubation during the TTT was really rough and he (and all of Dr. Darbari's kids/patients) are so brave. At that point, Mack was vomiting and fainting several times throughout every day. When the test was over, I asked Mack if it was horrible. and he replied, "It just felt like a normal day, Mom." We were so relieved to have an explanation for his symptoms.

They let your HR get to 200BPM??? Yikes. as I recall that's not too far from the norm for you...Right? Oh dear, it's hard to imagine how you function. You're one tough cookie!

Julie