Had Ttt Today

[s-pot]

V Confused and Frustrated after my first Proper TTT today. Suppose I was hoping it mite show exactly what was causing my most frequent and severe symptoms and it didnt.

Firstly.....Im defo Potsy

HR 68-72 on lying and on 70degree tilt jumped to 107bpm and steadily increased over the following 10mins to bout 120bpm

But NO orthostatic hypotension, BP fluctuated but didnt dip! Apart from feeling my heart pounding like mad/irregular as it usually does and some twitching it did'nt bring on the other symptoms I experience.

Ive had two theories

A) My BP has been crashing which has been causing the daily sudden onset dry wretching/vomiting that I have had for the past two years or

B)Im getting regular hypogylcaemic attacks which is causing the above symptoms. ?Reactive Hypoglcaemia?Hyperinsulinaemia?

Ive never fainted, from time to time feel the usual wooziness of POTS along with the overwhelming fatigue, twitching and some other various non descript symptoms.

Now OH has been ruled out im onto checking into the blood sugar theory!!

What im confused about is :

I stopped meds 3 days ago for the TTT - Midon 5mg OD and 2.5mg OD, Lexapro 5mg.

I dont feel any worse or any better....prob slightly more symptoms on saturday but overall not much difference at all. So...

• If Low BP is not a problem for me should I really be taking the Midon at all and could it be making things worse at times?
  
• I went on the Lexapro just to see would it make any difference (had to convince doc on this one!) Think it did initially but don think so now...Any point on staying on it? Wud rather not!
  
• What do others with POTS without any other diagnosis take to treat the Tachy
  

Any advice gratefully received guys!

Oh also if there is anyone who has experience of hypoglycaemia related to this any advice on what sort of testing I should be asking for? Ive decided to take this into my own hands and figure out as much as I can by myself...seems ta be the only way to go!!!

Thanks

[sue1234]

I can handle any hypoglycemia questions you might have! I am having it looked into AGAIN in a few days, to see if they can fix or control it.

[Chaos]

How long was your TTT? Was it the neuro type 10 minute one or a cardiac type 45 minute one? I know on my first TTT which demo'd POTS in the first 10 minutes it took me about 37 minutes before my BP crashed. On subsequent ones it happened faster. Guess my body had figured out it might save itself the misery and just get it over with. LOL I've never fainted either.

Since I'm not a doctor, can't make recommendations regarding your meds. I know midodrine has a short half life so doesn't stay in your body very long, but not sure how long lexapro hangs on. It may be that 3 days isn't long enough to be off it for it to be out of your system.

[s-pot]

I can handle any hypoglycemia questions you might have! I am having it looked into AGAIN in a few days, to see if they can fix or control it.

Thanks!

Im reading up on this now and the symptoms etc sound oh so familiar! Postprandial reactive hypoglycaemia....a very definate possibility for me i think! My last hosp admission it was discovered my BS were just 2.8-3.2 2 hrs post meals and on one occasion just 2.8 an hour after 4 biscuits and tea . Glucose monitor is on the way in the post and im going to keep a diary for next 2 wks....luckily I have an appointment with an Endocrinologist on the 23rd, may get places with that!

So I have got a question for you if you dont mind :

Any idea how often/when i should test BS if im trying to discover a pattern myself? I get very hungry always 2-3hrs after eating....my mates joke all the time they dont understand how i can stay so slim when im always snacking! But if it is reactive hypo's im in a vicious cycle.

Also is it common to have nausea/wretching/vomiting with hypo's? I also get very tachy when the nausea/wretching is coming on.

[s-pot]

Chaos thanks for post

the test took nearly an hour so im guessing thats the full job!

they gave about 10mins to get accurate resting stats and hook me up...20min tilting. Then put me back down and put Isopro??something like that into me to pump my heart more and tilted for another 20mins. Seemed v thorough. BP didnt dip...when they put the drug in my heart rate hit 160bpm I think and i started to shake and twitch then....at this point i became HYPERtensive.

Ill havto suss the meds out over the next few days...im not missing the headaches that come along with the midon thou

[sue1234]

S-pot, I believe your average 3.0 translates to roughly 51 in our numbers. If I don't eat every 2 hours, I also drop into the 50s, a few 40s.

I would recommend you test your blood sugar when you first get up for a few days to see what your fasting level is. Then test 1 hour after eating to see how high you go. Also, be sure and test for a few days, so you can average out what it does after various meals.

Definitely test when you feel a low coming on. Then treat it. All this will give your endo a good idea what happens at some of the crucial diagnostic times.

When the low happens, alot of adrenaline is released to help your body raise the glucose, and a "shot" of adrenaline is notorious for causing nausea/vomiting, and definitely the tachy your describe.

One last thing. If you're like me, I wake up off/on during the night with what I believe to be adrenaline surges related to hypos. If you wake up in the middle of the night, try testing your glucose then to see if you are dipping. I did this for three nights in a row and found two normal reading and one reading of 55.

IF a doctor has never addressed your low blood sugar before, make sure they test your morning cortisol to make sure you are not adrenal insufficient. That can cause hypos.

Lastly, don't let anyone say you "just have reactive hypoglycemia". I've been told that for 20 years, and that is just not normal if you are having symptoms. Here is an article that shows a couple of people that react to sugar only and not fasting. It was written by doctors in England, so they might be contacts for you, if needed:

http://jcem.endojournals.org/content/91/12/4733.full

[s-pot]

Thanks so much sue for all that info!!

Im so surprised but happy to read what you wrote about the adrenaline surges and the nighttime hypos!!!! I regularly wake up during the night very tachy and with that 'surge' I think ur talking about.

I nearly always feel very hungry when I wake but manage sometimes to dose back to sleep again. More recently ive taken to having snacks beside my bed and a glass of milk...otherwise im gettin up to eat at night to relieve the symptoms. Ive never mentioned it before just put it down as another crazy Potsy thing but thought it strange that i was tachy when lying dwn given that POTs is associated with upright posture.

The hypo's that were picked up in the hospital were not adressed but dismissed rather quickly. I have a past history of an eating disorder(im years recovered now) and I over heard the conversation outside my room about whether the docs would do the appropriate tests or not...it was quickly written off as 'sure look at her history she's probable just not eating'! To say i was upset would be an understatement.

Until i have proof of the hypos myself and get a good pattern in a diary I wont say it to em again....ya learn alot along the way!! So thanks for your guidance on whens the best time to take them.

I think when they diagnosed the Pots the gave me a shot of cortisone and came back to take my blood a few hours later?? dont know what this was for...but dont think i have had the morning cortisol levels checked ever.

Thank you so much for that info sue...i hope this time some of these pieces will fit into place. The daily vomiting is far worse than the tachy and it just keeps getting worse. I am desperate to find out exactly whats causing it so I can work on managing it better....2yrs with no answers or suggestions and daily vomiting...its hard to keep positive!

[sue1234]

You might have had the ACTH stimulation test, where they get a baseline cortisol, inject you and then check and see if your adrenals release enough cortisol.

I used to eat in the middle of the night and it helped me go back to sleep faster. I have gotten lazy now, and don't eat, so I just toss and turn for an hour or two.

[ramakentesh]

Cardinal finding in POTS is feelings of low blood pressure without any measureable drop. There are other mechanisms that are altering blood flow rather than pressure.

Hope the blood sugar thing pans out.

[issie]

I have had low blood sugar since I was a child - when they did my test it dropped down in the low 30's. But, as an adult it tends to be higher. My doc told me to use GTF chromium and when I first started out I used it two times a day. It has balanced my blood sugars out and I don't have many issues with it. And, severe extremes run in my family.