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Derek1987

Did another TTT today

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It was torture. When they leaned me up, my body did not like it. Got really hot and flushed and ill. They took blood while I was doing the TTT. They gave me some ice packs. They think I have hyperadrenergic POTS. They think this blood work will prove it. Something weird though. I've taken two 24 hour urine tests and she said they both appear to be tampered with and diluted with water. Which I didn't do of course. They don't think I tampered with it but they gave me a drug test to rule things out. I'm Soooooo tired.

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Hi @Derek1987 - welcome to the club!!!! That stinks that they think you are hyperPOTS. But at least you will know then. I have it too and can give you many tips - but mostly it will be meds that take the edge off. Regarding the TTT - isn't it the most sadistic medical procedure ever invented? Did you pass out? --- I hope you will feel better soon. I will PM you about some meds that have helped me. Rest up!!!!!

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4 hours ago, Pistol said:

Hi @Derek1987 - welcome to the club!!!! That stinks that they think you are hyperPOTS. But at least you will know then. I have it too and can give you many tips - but mostly it will be meds that take the edge off. Regarding the TTT - isn't it the most sadistic medical procedure ever invented? Did you pass out? --- I hope you will feel better soon. I will PM you about some meds that have helped me. Rest up!!!!!

The test has me feeling like crap still. But during the test, it was torture. Especially when they leaned me up. I didn't pass out but there were moments where I thought it was coming. I got so hot and sick. My hands were shaking hard and sweating and I was flushed. Later on in the visit, I got nauseated after drinking water. And I was ill for the rest of day and night.

 

Please PM me whatever tips and info you have. Like I said, I should have this diagnosis next week. You thought this all along. They were treating me for Rocky mountain fever at first. They thought that's what messed me up. I just hope my blood work comes back correct so I can be diagnosed officially. I want the right diagnosis of course but the sooner the better.

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4 hours ago, Derek1987 said:

The test has me feeling like crap still. But during the test, it was torture. Especially when they leaned me up. I didn't pass out but there were moments where I thought it was coming. I got so hot and sick. My hands were shaking hard and sweating and I was flushed.

That's exactly how I was when I had mine in Feb. I really thought my blood levels would show a hyperadrenergic picture, but they were actually normal in both positions! I was frustrated as I was looking for something to treat. Too low catecholamines, there is midodrine and droxidopa, too high and there is clonidine, alpha & beta blockers etc, but nothing in between!

I hope you gain some info that leads to a helpful treatment, please keep us posted with your results.

B xxx

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6 hours ago, bombsh3ll said:

That's exactly how I was when I had mine in Feb. I really thought my blood levels would show a hyperadrenergic picture, but they were actually normal in both positions! I was frustrated as I was looking for something to treat. Too low catecholamines, there is midodrine and droxidopa, too high and there is clonidine, alpha & beta blockers etc, but nothing in between!

I hope you gain some info that leads to a helpful treatment, please keep us posted with your results.

B xxx

Me too because I'm still hurting from that TTT. I have a small fever. Sweaty hands. Double bags under my eyes. Nausea. Feel so sick. And I have a neurologist appointment tomorrow. I am so done right now. Hope you get answers and feel better as well.

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I passed out when I had a TTT, a few minutes after they gave me nitro. Not fun. Never passed out before. 

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14 hours ago, JimL said:

I passed out when I had a TTT, a few minutes after they gave me nitro. Not fun. Never passed out before. 

Not sure what nitro is. What's it's purpose? 

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40 minutes ago, Derek1987 said:

Not sure what nitro is. What's it's purpose? 

Nitroglycerine. It dialates arteries and if you have some sort of orthostatic intolerance, it may induce passing out. It did with me. 

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15 minutes ago, JimL said:

Nitroglycerine. It dialates arteries and if you have some sort of orthostatic intolerance, it may induce passing out. It did with me. 

Glad they didn't do that to me or I'm sure I would of passed out. How did they get you to come to?

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@JimL - my first TTT went the same as yours - passed out cold after nitro. At that time they diagnosed me with NCS - they didn't find out about the POTS until after another TTT and neurotransmitter labs. 

@Derek1987 - if you pass out during the TTT they just return the table to the horizontal position and people regain consciousness rather quickly. 

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1 minute ago, Pistol said:

@JimL - my first TTT went the same as yours - passed out cold after nitro. At that time they diagnosed me with NCS - they didn't find out about the POTS until after another TTT and neurotransmitter labs. 

@Derek1987 - if you pass out during the TTT they just return the table to the horizontal position and people regain consciousness rather quickly. 

They said I was out for about 6 seconds. It was scary as I didn't know it happened. I just woke up flat on the table knowing I had been near vertical. 

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5 minutes ago, Pistol said:

@JimL - my first TTT went the same as yours - passed out cold after nitro. At that time they diagnosed me with NCS - they didn't find out about the POTS until after another TTT and neurotransmitter labs. 

@Derek1987 - if you pass out during the TTT they just return the table to the horizontal position and people regain consciousness rather quickly. 

Question. When the passing out occurs on the TTT, is it because your blood pressure dropped too low? When I passed out at Olive garden I was sitting up and I eventually regained my hearing and sight but I couldn't move or talk. When I was in the ambulance obviously laying down, he told me my blood pressure was coming back up. I was still super weak and answering the paramedics questions was like trying to bench press 300 pounds. I eventually gained all my strength back at the hospital. I just felt like garbage for a few days after.

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52 minutes ago, Derek1987 said:

Question. When the passing out occurs on the TTT, is it because your blood pressure dropped too low? When I passed out at Olive garden I was sitting up and I eventually regained my hearing and sight but I couldn't move or talk. When I was in the ambulance obviously laying down, he told me my blood pressure was coming back up. I was still super weak and answering the paramedics questions was like trying to bench press 300 pounds. I eventually gained all my strength back at the hospital. I just felt like garbage for a few days after.

I guess the brain loses enough blood flow to check out. I woke up and could talk, but it was unsettling because I didn't know it happened. It's like someone pulled the plug. I have to say in retro I didn't feel right before it happened. Hard to explain. Flushed, strange feeling in my abdomen and chest, warm, very warm then boom. 

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@Derek1987 - by the time I had my TTT I was already a seasoned Pro at syncope. I knew it was happening and told them so, as my HR was skyrocketing and then dropped to below 50 ( is what they told me ). My symptoms before were ( and usually are ) lightheadedness, cold sweat, feeling of impending doom. Now - that is when I faint, which mostly happens when my BP drops ( so was the case in the TTT ). When I have seizures it is due to extreme vasoconstriction causing a sudden increase in BP and decrease in circulation to the brain from this. The symptoms prior to that are shaking, tremors, feeling extremely cold, yawning and ( what people have witnessed ) blue lips, a blank stare and then a seizure that looks like a real grand mal seizure. --- I guess I have learned to be in tune with my body by now and can tell beforehand. I know that you have been pretty much essentially LIVING in a constant state of feeling like passing out - I am sorry about that. Hopefully the labs they drew during your TTT will shed some light onto what is going on.  

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15 hours ago, Pistol said:

I know that you have been pretty much essentially LIVING in a constant state of feeling like passing out

That is my experience too, so I will be very interested to hear if you find anything. What is frustrating for me is that my numbers can be fine and do not necessarily correlate with severe symptoms. I believe for me it is low cardiac output secondary to hypovolaemia, sympathetic system compensates giving you a normal or high BP, normal HR when sitting. I demonstrated POTS on the table but it wasn't massive like some people's although my resting HR is low. 

The technician made a comment to me like some people have a heart rate in the 150's or 170's yet they function upright. That didn't make me feel great, & I was too ill to explain the unmeasured variables of cardiac output & cerebral blood flow. They matter!

Hope you get your results soon Derek. 

B xxx

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Me too. I feel like I could pass out most all the time, and it used to be that I could have nice vital signs and still feel horrible. My output is okay on echo, but who knows about my blood volume! 

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I have had 2 TTTs.  The first used nitrogycerine, and I almost passed out.  Heart rate rose up to a point, and then HR and BP both dropped suddenly.  They got me flat in time, though.  That one diagnosed me with NCS.  The second TTT was specifically for testing for hPOTS, so they did not use nitro, nor did they leave me tilted upright long enough for NCS to kick in naturally.  

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