New And Lots Of Questions

[JennaC]

I'm 25 and was diagnosed last week with a TTT by an EP cardiologist after 12 months of testing and several specialists. In a year I've gone from playing sports and exercising everyday to barely being able to make it to school. I'm a graduate student and my program is fortunately very understanding. I moved to North Carolina last August and thought my allergies and mild asthma were just getting worse. As it turns out I don't really have asthma!

I've been lurking for a few weeks and done plenty of searches, but I still have a million questions!

1. Does anyone here use supplemental oxygen? I was prescribed 2liter/min with "exercise" when my pulmonologist saw my O2 saturation drop to 82% walking up a few flights of stairs. I understand that reduced blood flow/pooling is probably the cause, but they are very concerned and want to do arterial blood draws during an exercise test. 2. Has anyone had this kind of testing.

3.Has anyone experienced severe heartburn with Florinef? I've have horrible heartburn 2 out of 3 nights that I've been on florinef. My doctors put me on prilosec to try and get rid of my chest pain. I insisted that there is a very clear difference between having heartburn and the chest pain I experience. Nonetheless, I was having heartburn maybe once a month, but it would flare up when I traveled, so I am being compliant and still take 20mg every morning.

Thanks!

[potsgirl]

Welcome to Dinet, JennaC!

I know that most of us probably get very short of breath going up just a flight or two of stairs, but I have yet to hear of anyone put on oxygen for it. I know I can barely breathe when I reach the top of our stairs, and that my HR is going like crazy. It's interesting that they have you on oxygen.

I didn't have chest pain with Florinef, but I had major headaches that I couldn't tolerate. I'm sure others on this Forum probably have had chest pain with this med, however.

Sorry I can't be of more help, I'm sure others will have more enlightening responses, but again - welcome to our community.

Cheers,

Jana

[MomtoGiuliana]

Welcome! Although sorry you are here and have had such a decline in health.

I am also interested that you are on oxygen for exercise. I've never heard of measuring oxygen saturation during exercise, for OI. Is it b/c they are concerned about possible asthma? What happens when you climb a flight of stairs, symptom-wise?

There are many on this forum on florinef so hopefully some of them will give you input.

[JennaC]

I started seeing a pulmonologist in March because we though my asthma was just getting worse. They did an informal 6 min walk test and my sats fell to about 90%. They did many lung function and vascular tests which only showed a higher than normal heart rate (although it took them months to figure that out) and a low 02 saturation when I exercise.

In july, a new pulmonologist took me up 3 flights of stairs when I told him how short of breath I get and have chest pain. (This is after ruling out asthma, pulmonary hypertension and basic heart defects with an echo.) About halfway up the stairs, they saw my sats fall below 90% and heart rate shoot to 160. Apparently anything below 90% warrants an O2 prescription.

[MomtoGiuliana]

Interesting. I am not sure how many of us POTS patients get that test. I wonder how many of us fall in to the category of "needing O2 prescription". In most cases we are told to exercise as much as we are able to, b/c this will improve our strength and symptoms.

[Tammy]

Wow, that sounds interesting too. I wonder what our oxygen levels are when we exercise. I've never had that test, but I do get terrible lightheadedness, weakness, nausea, and very fast heart rate from just a little bit of movement. I don't think I could do 3 flights of stairs. I have 14 steps in my house from the basement to the upstairs and I take a break half way, to catch my breath. Really wonder if I'd have the same thing you have going.

Yeah, you are correct that anything under 90 does require oxygen. My 4 year old daughter had a severe case of pneumonia this past summer and after her surgery to scrap the gunk off her lung and chest wall, her oxygen levels dropped and as soon as it went to 89 the monitor started beeping and they had her on oxygen until her levels were up.

I'm not even sure why type of doctor to see. I saw you mentioned a pulmunologist, which I've never seen, but so often I post about my symptoms and get responses that it could be asthma, but yet when I look up asthma, my symptoms are exactly like that either. Something for me to think about I guess

[JennaC]

Oh, and the cardiologist thinks that a stress test where my hr hits 200 and O2 sats drop to 90% in less than 10 minutes is alright. I'm 25 and used to spend 6+ hours/week doing cardio. Blah. At least he was nice enough to do a TTT within 2 weeks of seeing him for the first time.

I'm glad my pulmonologist seems concerned, so I'm going to stick with him and wait to see a specialist.

[Tachy Phlegming]

When I took the stress test, the technicians put on the air conditioning for me. I also poured water on my head and body before the test.

[firewatcher]

How did they measure your blood oxygen? Was it a little finger cuff?

[erikainorlando]

My O2 also used to get very low. The did the arterial gases test and mine was 77. They thought I had a pulmonary obstruction...but then we all realized that my hr was 150+ all the time I tried to move around. Apparently the lungs can't keep up with the heart when the hr is that high. SO...yes, I had a lot of O2 administered at differnet times. Now, as we have gotten my hr more under control my O2 is much better. Honestly as time has gone on my O2 really is better...altho it can still dip at the end of the day or if I have been moving around a lot.

I can't take Florinef...terrible headaches...just not tolerable.

Anyway..there is my experience...

Erika

[Jen2533]

Hi Jenna,

Welcome to the club, you will get alot of good support and information here. I just saw my cardiologist on Friday and was confirmed to have POTS. I also have Myasthenia Gravis. I don't know if it was the POTS or the MG that caused the O2 problems for me but when I had my 6 min. walk test in June my 02 dropped to 80 and didn't go over 88 after they gave me the supplemental oxygen.

My pulmonologist prescribed 2lpm during exertion and 3lpm during sleep. My ultimate goal has been to get off the oxygen. I went through a crazy amount of tests over the summer and thorugh the fall.

Last week Wednesday I had my ABG exercise test. We are still waiting on the results from the blood draws but I passed the exercise test and pulmonary function tests (that I failed twice previously) with flying colors. The cardiologist thinks the combination of the Mestinon, which I started Oct. 5th for Myasthenia and the Adderall I am on for Adult ADD have kept my POTS mangageable and he doesn't recommend changing anything right now.

They said I could stop using the 02 during my sleep and said to monitor my 02 with my pulse oxymiter (which I got for $35 online) but it looks like I can ditch the tank...yeay!!! I would recommend asking for a PFT to get an assessment of your diaphragm strength and if it is weak see if they would be willing to treat you with Mestinon. It is my miracle drug.

The ABG excersize test wasn't too horrible, got a bit dizzy, pre syncopal stuff but they numbed my skin before they put the artery cath in and that was the part I was most afraid of.

Good luck to you, if you have any other questions on the ABG or supplemental oxygen just give me a holler...btw, I am 32 so I know how an 02 tank is not the accessory choice of the season but it works wonders if you need it, and at least for now you do. I wish you well and hope you are able to manage your symptoms well.

Jen

[Mrs. Burschman]

Hi Jenna. I'm glad you found us, but sorry you needed to!

I kind of black out climbing stairs. It makes my heart race. I had to run up two flights of stairs the other day, and it took hours to recover. Bleah.

Amy

[JennaC]

Thanks for all the replies!

They've measured O2 saturation with the little finger probe and are doing an ABG stress test in a week. Back in April they tried to do pre and post exercise ABG draws, but I passed out, so now there are going to just put an arterial line in before the test.

I'm so sick of being tested on, but at least now I'm getting some answers and possible treatments.

Anyone have any good tips for heartburn/acid reflux? I woke up in so much pain last night!

[ramakentesh]

Gees we dont get offered any of that kind of stuff in Oz... breathing devices for POTS are being currently evaluated at the Vandy Auto centre.

[EarthMother]

The one thing I remember 'liking' about the hospital was the oxygen! I feel soooo much better when there is blowing air near my nose. I can't ever recall an O2 test during any of my TTT or cardiac stress tests. Would be interesting. But like Rama said, I've not seen any options for that here in the states either unless you have a pulmanary disorder.

Funny, my first 'diagnosis' back when I was in college <1980's> was asthma ... which turns out I never had as well.

[JennaC]

The nurse in the pulmonology clinic comment on how much better I looked when I came back with the oxygen.

I don't use it all the time, but it really helps when I need to be at school or in the lab all day. For instance, I'll use it a 2l/min while walking to the bus stop and through campus. If I have an experiment going on I will also use it during the prep when I'm standing and moving around. I'm also starting to wear compression sock thanks to all the info on this site!

Hopefully I will make it through my PhD program. I freaked out a little yesterday when my boss chewed me out. I was convinced I'd be kicked out of school and end up broke with no health insurance. In reality, even with my symptoms now, I could probably last another year or 2 and I'd still be awarded a masters degree for my efforts. I also have the option to take up to 1 year medical leave...

[Stormie74]

Anyone have any good tips for heartburn/acid reflux? I woke up in so much pain last night!

I am a fan of TUMS. They are my friend, and I always take three before I go to bed at night. I find when I have those "strange feelings" we all get, if I take a few TUMS it usually helps. I used to take Prilosec OTC and then by Rx, but I feel better when I'm not on it on a regular basis. I always try to take as little medication as I can get away with, though.

Caron

[Jen2533]

Jenna,

In regards to the reflux I find Mylanta liquid works best for me but I want to caution that you not take it within a hour before/after you take your medication as it can block the absorption. That is true for all antacids.

For school (my husband is back in college to finish his degree). He is concerned about his grade in one of his classes and was wondering if there was any protection of his financial aid as he has had to be my caregiver for 1.5 months of this semester. Do you know where we can get info on this?

Thanks,

Jen

[JennaC]

For school (my husband is back in college to finish his degree). He is concerned about his grade in one of his classes and was wondering if there was any protection of his financial aid as he has had to be my caregiver for 1.5 months of this semester. Do you know where we can get info on this?

Thanks,

Jen

Jen,

I'm not sure about caregivers and financial aid. I had lots of problems when my father was very ill with regards to staying in my courses and dealing with financial aid. I think I ended up getting paid to be his caregiver somehow??? Are you on disability? One trick I would do for financial aid, was to add a PE class, or a super easy online course to keep enough credits and high enough GPA.

--Jenna

[iheartcats]

Sorry to hear you were diagnosed! Glad you find this site.

I, too, haven't heard of O2 for POTS (without Pulmonary Diseases, anyway). I had a Pulmonary function test last year and it was fine. But yet, I'm out of O2 walking up hills/stairs and probably like many others here just deal or learn to compensate. Some days are worse than others.

I do like O2. I told my hubby that'd be a bar treat for me - an Oxygen Bar! That's! a night out! (Wish they were still trendy, haven't seen any in years and years).

Good luck to you, at least you have an diagnosis now.

[iheartcats]

Jenna,

In regards to the reflux I find Mylanta liquid works best for me but I want to caution that you not take it within a hour before/after you take your medication as it can block the absorption. That is true for all antacids.

For school (my husband is back in college to finish his degree). He is concerned about his grade in one of his classes and was wondering if there was any protection of his financial aid as he has had to be my caregiver for 1.5 months of this semester. Do you know where we can get info on this?

Thanks,

Jen

You can usually appeal to the financial aid office, and back up with medical records if need be. You have to explain what happened, the grade wasn't his fault (partying, not studying, etc). Usually if it's the only 'bad' thing on the record, you can work it out. Be friendly! Always helps with those offices!