Scheduled for a TTT

[Ernie]

I have a TTT this coming Friday and I am a bit nervous about it.

I have 20 hours of round trip to get to the hospital. The other time I was hospitalised when I had my TTT and just being rolled on the gurney to my room made me feel terribly sick. After the TTT I fainted 5 times going to the washroom because I was so weak. I am worried because this time I have to come back to Montreal right after the TTT. I won't be driving (I know you had guessed) but just being a passenger will be hard to deal with. The last time I went to see this cardiologist I fainted 3 times on my way back and I had just stood 2 minutes with medication (poor man's TTT). I don't know how I will manage.

Do you have any advice to help me deal with the trip? and the TTT?

P.S.: They want to inject me with isoproterenol after some minutes if I don't faint fast enough. I am also scared of getting worse with this product. How can I avoid being injected anything?

Thanks for your help

Ernie

[corina]

Ernie,

I don't think I can help you with this. Here in Holland they don't inject you when you don't faint. The only thing I would advise for the driving home trip is to lie down in the back of the car if that's possible or otherwise to stay over a night but you might have thought of that yourself. However I wish you the best on your TTT,

Corina

[Mary]

Ernie,

Thinking about this makes me uneasy but... You do have ortions. If it is the same doctor or facility that is doing the test, ask if you could stay overnight (they can give you IV saline solution). Make sure you are well rested, hydrated and have taken your meds. You are in control of what they plan on doing so try to stay calm. Lay down on your trips. If they won't admit you overnight think about a hotel room for the night before and after.

I question another TTT if you have had one and are already diagnosed. What are they looking for? You have already demonstrated an inability to maintain an upright position.

I have located a site that may be of interest to you...

www.cpmcnet.columbia.edu/dept/syncope/tiltfaq.html. One last thing... always remember, you as a patient have the right to refuse treatments. Talk your concerns over with your.

Good luck. Please kept us updated. Mary

Try site here... had trouble posting... sorry

TTT info

[Ernie]

Thank you Corina and Mary for your suggestions,

I will ask to get an IV saline after the test and if I am too out of it I will spend the night there.

I need to have enough courage to refuse the isuprel. It is still difficult for me to say no to doctors.

Ernie

[Jersey Girl]

I was told at Mt. Sinai Hospital in NYC that it is not necessary and even contra-indicated to give these type of medications to induce fainting for the diagnosis. I was also "made to faint" by an electrophysiologist who was not up to date and just diagnosed me with vasovagal syndrome when I really had POTS. Not all tilt table tests are equal.

[Ernie]

Hi MCH,

I forgot to answer your question: Why another TTT?

I was diagnosed in the States and Canadian specialists are still skeptical because I am a rare bird. So I want a "second" opinion by a Canadian specialist.

I will ask them how many minutes I have to "perform" without the isuprel and if I think that it is too short I will refuse the medication.

Jersey Girl: Why do they say it is contraindicated?

Well I just started my periods this morning so I think that the TTT will go fast!

Wish me luck! I am leaving tomorrow morning.

Ernie

[Mary]

Ernie,

How did your test go? Couldn't your new md's just get your records from the states?? Hope you were able to refuse if needed We all have rights but get scared especially when we feel intimidated. Remember even dr's are humans.. not all as nice or knowledgable as others but.. humans just the same. Let me know how your TTT went. Mary

[Ernie]

Hi Mary,

I'll tell the short story. It was on Friday the 13th and I was the nurse's first syncope case of her career.

So she wanted to get my height and weight and I passed out on the scale after 45 seconds. Then they wanted to cancel the TTT because of the fainting and I said no. So I fainted after 7 minutes on the TTT. Then they injected different medication to test my autonomic system and passed out again getting up from the TTT. So they tried to put me on the gurney and I passed out 2x again. They decided to keep me under observation for the day. They took good care of me and sent me home when I was able to eat and stand for 1 minute. They gave me a 1L of saline. The nurse told me that I am the only patient who had such good care and also the only one who was sent for observation after a TTT. The 2 doctors and the nurse even wheeled me to my car! The doctor told me that I am a very challenging case. Really!!!!!!!!!!!!!

I have to go back in 3 weeks to get the results. Another 20 hours of driving. This time we will spend a day in Niagara Falls to visit.

Ernie

[MightyMouse]

Hi Ernie, I went to Niagara 2 years ago and loved it there! If you have a wheel chair to get around, that would be preferred as there is some distance between many of the sites. Other than the Falls, one of my favorite places was the butterfly conservatory--but if you're super heat sensitive, do not go there--it's tropical hot inside. I held out for about 10 or 15 minutes and then had to leave. The "Maid of the Mist" was a blast too. If you're going to a number of attractions, buy one of the multi-pass sets at the observation area/park centers.

The obseration deck on the Canadian side gave me my best photos. If you've not looked on my website, I have photos there. http://users.snip.net/%7Eninawilde/niagara.html

Not sure whether to say congratulations or so sorry about your TTT. At least it's obvious to them that you have a very real issue. Hope that the test leads them towards some fruitful intervention for you.

Safe travels to your next appointment.

Nina

[Mary]

Hi Ernie,

WOW !!!!!!!!!!!!!!!!!!! What a day you had. Can't believe they just didn't give the results then. So sorry girl, but you sadly failed again!! The staff was dearly concerned and rightly so. I would think they would have kept you overnight and tanked you up good. Thank the Lord I only needed one TTT cause I wouldn't want to do it again

Thanks for letting me know how you did. I love to support when I can and get support when I need it.

Take care, Mary

[corina]

Hi Ernie

I'm very gld they've taken good care of you. So there are caring doctors and nurses. Hope you're feeling better right now after your trip.

Corina

[Ernie]

Hi Nina,

I am happy I did this TTT because I feel that they are on to something. When they injected one of the products I was paralysed within 30 seconds. It reproduced the exact symptoms that I have when I faint. So when I go back I will ask my specialist if he could find the link between my symptoms and the reaction I had to that product. Also, I will ask him for a medication to help me out.

I have heard from a woman over there that when they get interested in your case they really try hard to help you out. So it seems that I have finally found a Canadian doctor who will push the testing further than the basic TTT.

I have 2 weeks to wait to go back for the results and let me tell you that I am restless.

Thanks for the suggestions at Niagara Falls.

Mary and Corina

I feel better today than during the week-end but I think it will take me a few more days before I get back to baseline.

Mary

The doctor did not want to give me the result right away because I am a challenging case and he did not have enough experience. My specialist was suppose to be there but he had to leave the country suddenly. I only found out after I had finished the tests. If I would have known I would have rescheduled the TTT. On the other hand, I have time to think about the whole test and come up with "intelligent" questions.

To everyone

Please pray for me so that doctors find medication to help me with muscle weakness, paralysis and fainting.

Ernie

[ethansmom]

Ernie,

It sounds like your appointment went well. I really hope you have found a doc who will work with you as much as possible to get you functioning at your best! Keep us updated!

[Ernie]

Hi everyone,

I am going back to my cardiologist to get the result of my TTT and all the tests they did. Wish me luck!

Ernie

[corina]

Hi Ernie,

good luck on getting the results of your tests. Hope it works out fine for you (if possible!)

Corina

[Guest Julia59]

Best of luck to you Ernie! I hope you get the help you need to feel better after getting the results of your TTT test.

My husband Ron took my to Niagra Falls in 1999 for my 40th birthday. The temperatures were in the 70s and the weather was perfect. I was able to walk all over the place because my POTs had not hit full force yet. I had been on beta blockers for 9 years, but not real symptomatic other then mild hyper adrengic attacks and the tachycardia was controlled by the BB.

It was only a 5 hour drive from Toledo. We went the Canada route on the way there, and the New York/Pennsylvinia route on the way back.

Nina, we saw the butterfly house too, but did not go in. I can't remember why. WE also went to the Hard Rock Cafe' which was loads of fun---and we went to the casino. The tour Bus ride was a great time too.

Good luck again Ernie--your in my prayers.

Julie :0)

[Ernie]

Corina and Julia,

Well I just came back from seing my cardiologist and he told me that my receptors are borderline normal and that I have extremely high adrenaline and norepinephrine levels. He added that I am extremely sick. It made me feel good to be validated by a specialist. He wants me back in 6 months to do some further testing to find why I paralyse when I faint. (He needs to buy the equipment first!). I am very satisfied with my visit with him.

I spent a day visiting Niagara Falls (in the wheelchair) to celebrate. I enjoyed every moment of my visit. I am glad I have a wonderful friend who drives me and takes care of me. (Remember her Julia?) We went to the Butterfly garden, on the boat, on the lift, under the falls and we had our supper about 5 feet from the falls. We were soaken wet but so thrilled.

I have finally found a Canadian doctor who believes me. He said I have cerebral syncope which he says is extremely rare. He is a friend of Dr Grubb and they have studied medicine together.

I was so excited when I left his office. He is the first Canadian specialist who wants to have me as a patient. All the others I saw said that I was "too sick" and just flushed me out. It's a 20 hour round trip but well worth it.

Thanks for your support

Ernie

[MightyMouse]

Ernie, I'm so happy that you finally found someone within your own medical system who knows what to do and is willing to stick with you!!! What a treasure

I loved the butterfly garden--it was one of my favorite places--mostly because they were so colorful and I don't get to see too many at home.

Nina

[geneva]

Ernie, I am so happy for you and hope that now you will have some peace of mind, knowing you have a doctor who understands and I hope will be able to help you.

It is great to hear that you got to have some FUN time. YOu so deserve it!!

[dizzy]

Ernie,

I am so glad that you got some answers and some validation. It sounds like you had a wonderful time in Niagra Falls - you deserve a good day out! I would love to see the falls someday too.

I think i have asked this question before, but brain fog is hiding the answer from me. How do you get tested for adrenalin and norepineprine levels? Is it a blood or urine test?

After the Isuprel test I was told I had overly sensetive beta receptors - but beta blocker didn't seem to help me. They have never tested my adrenalin or norepi levels - I would like to have that done. What should I ask for?

Thanks,

Susan

[Ernie]

Hi Susan,

If you want to have your adrenaline and norepinephrine tested you can ask for a catecholamine test. It is a blood test. They first take a blood sample supine and then another blood test after being upright for 5 minutes.

Ernie

[corina]

Hi Ernie,

I'm glad to hear such great news from you. I think this is just what you needed. It must make you feel very strong to have found this new doctor. Congratulations!!!

Im'also glad you had such a nice day at Niagra Falls. Since having POTS I noticed that I enjoy the things I do much much more. In March I went to the Van Goh museum in Amsterdam (this was something I always wanted to do) and even it sometimes was hard to watch the paintings because I was in my wheelchair, I enjoyed it so much that I can even feel it half a year later! It's great to have people around you who will take you out to do these things!

Corina