My new autonomic cardiologist wants to hospitalize me for tests!!!

[Gingergrrl]

@zzz I just wanted to clarify that I am not having an angiogram or heart biopsy or anything like that and I think my former posts must have been unclear!

I am doing the ACTH stim test today and will get getting the injection in my IV in about an hour. It looks like since my heart and lung scans were all clear that my issues are all autonomic and viral (basically CFS) but I haven't met with cardio yet so not sure what the plan will be.

I had an IV yesterday with saline, magnesium & potassium that lasted for six hours! I would like to do saline IV's at an infusion center but not if each one takes six hours!!! I am also very interested in the magnesium & Taurine shots that you mentioned but not sure who would give them to me?

I know he wants me to try Midodrine but I told the nurse I wanted to talk to him first b/c if I am getting the ACTH shot, I want to do one thing at a time since I react badly to everything and she said that was okay.

 

[taniaaust1]

I've seen a couple of references to viruses in the conduction system, but these references were describing how the viruses used the conduction system to get to the heart muscle, where they made their home. I've seen no reports of viruses causing trouble in the conduction system itself.

Viruses are a well known trigger for POTS, which of cause is a type of dysautonomia in which body has trouble controling things like heart and other essential functions.

 

[taniaaust1]

I would like to do saline IV's at an infusion center but not if each one takes six hours!!! .

They can be done a lot quicker then that, he obviously put the drip on very slow (Ive NEVER had one take that long to run in). I often get 2 bags of 1000ml in that time.

 

[taniaaust1]

When do you find out how your TTT went?

 

[Gingergrrl]

Today has been very slow here, I guess b/c it is the weekend. They messed up my ACTH stim test b/c the endocrinologist who came back to see me this morning said the blood had to be drawn at 30 and 60 min intervals but that didn't occur. I kept calling the nurses station b/c I didn't want this test to be for nothing.

So he finally drew the blood at 55 min instead of 30 min and then again at the 60 min mark so now I'm not really sure if this test will be accurate.

I have no idea when I will get results of the TTT but now concerned about the accuracy of that test as the entire thing took 15 min and from what I read on-line it is a much longer test. I feel like they are in a real rush here and questioning the accuracy of these last two tests.

I had hoped to see the cardio today but no idea when he is coming?

 

[Kati]

The ACTH stim test at 55 min, while not optimal will confirm that you have a response from your adrenals and whether that response is within range. Obviously the cardio unit is not used to have this test done. Don't be surprised if the results are normal. And by the way, if it's normal, forget about doing it again. It's not going to give them more information (at least not that I know of)

 

[taniaaust1]

I have no idea when I will get results of the TTT but now concerned about the accuracy of that test as the entire thing took 15 min and from what I read on-line it is a much longer test. I feel like they are in a real rush here and questioning the accuracy of these last two tests.

POTS is diagnosed by a 10 min standing test hence can be easily done in a normal doctors office (except if someone needs saline IV after). For a POTS diagnoses ones heart rate needs to increase by 30 beats per minute during a 10 min standing period after getting a "stable" laying reading. (I hope they bothered getting a "stable" laying reading first and not just a lying one).

Why those with ME/CFS usually have TTT is due to in ME/CFS we dont just have POTS as a common CFS issue but often will have other dysautonomia issues coexisting with it or one of the other ones without the POTS. To test for those, it needs to be at least 30-45 min standing test if the person can last) as the other CFS dysautonomia issues happen with a delayed onset.

So yeah, your TTT was bad as it wont pick up other common dysautonomias you may have with your ME/CFS but it WILL say if you have POTS or not. (***sighs*** hospitals.. I would of thought they would of gone to the trouble to get you tested decently seeing you were admitted to have this stuff done).

It sounds like the person doing the test, knew nothing about ME/CFS and hence didnt even know what to be looking for. Its ALWAYS a good idea to read up on the tests and how things relate to ME/CFS before going to them so you know if they are doing a test right or not. You cant trust the doctors to know the conditions to look for relevent to ME/CFS people.

had one test poor mans standing test done in a doctors clinic by a so called autonomic specialist, a professor ..she was hopeless. All she was really interested in was if I had pure autonomic failure, something I knew I certainly didnt have as my body does the opposite to that!!! After 10 mins standing she pronounced me as not having it. She also didnt know anything at all about the type of POTS I have and when I produced Dr David Bells info on it.. she said it couldnt be possible for someones body to do that. She did the standing test on me wrongly too.

Try not to worry about it at this point, it may well have showed up POTS so if it has, you will know at the very least you have one dysautonomia possibly causing your symptoms (NMH common coexists with that too or by itself in us and that is what your short test may not have picked up)

 

[Sushi]

@Gingergrrl

I don't see why you can't do the magnesium and taurine shots yourself. I know many who do.

Regarding the TTT, It is true that 15 minutes would likely pick up POTS itself, but it is also true that they need to keep you standing longer to pick up other types of dysautonomia. My test had two standing sections--the first about 15 minutes, then I was lowered while they did other autonomic tests, and the second was meant to last 45 minutes but my symptoms and results were so extreme at about 25 minutes that the test was stopped there as they had all the data they needed.

How many liters of saline did they give you? My autonomic doc liked to give 4 liters for people with extreme symptoms and that did last about that length of time, as a slow drip is better.

Hope you see your cardio today!

Sushi

 

[Gingergrrl]

I am really getting frustrated with this hospital now and have had some conflicts with a few of the nurses re: my medications and this ACTH stim test. I am a strong advocate and ask a lot of questions (and know my body and that I need to start with small doses of things).

Clearly the nurses don't like it and felt I was questioning their authority. My cardio promised me I could take my own meds, I could start with low doses, I would have a chance to ask questions and none of this turned out to be true. He promises anything in the moment but then never confers with the nurses and then they blame me.

He was abrupt with me this morning (maybe the nurses said I was a bad patient) and told me my TTT was positive for dysautonomia but wouldn't explain what or how. He said my BP is very low (which I knew) and that I have to start Midodrine and stay in the hospital until Mon to monitor the Midodrine and do the breathing tests.

I tried to ask questions re: Midodrine b/c I thought it was one option of many but he was adamant that this was the plan and got frustrated with me. He had promised to speak with Dr K but now doesn't seem interested.

I felt really coerced into taking Midodrine and I know some of you guys take it and are fine but I didn't like feeling coerced. I had such a life altering reaction to Levaquin that it is very hard for me to trust doctors. I feel like I am now labeled as the crazy & difficult CFS patient here and just want to go home.

@Sushi, How would I give myself mag & taurine shots? Wouldn't it have to be prescribed for me?

 

[Sushi]

@Gingergrrl

Yes, they would have to be prescribed but you can give them yourself.

Be sure to get the physician's version of your TTT results before you leave. It will be helpful to Dr. K.

I'd say that it is good to try midodrine in the hospital as some do very well with it and some don't! I was one of the ones who didn't and would have been happy to be in the hospital. They will probably carefully monitor your BP for the time you are an inpatient.

Sushi

 

[Kati]

I felt really coerced into taking Midodrine and I know some of you guys take it and are fine but I didn't like feeling coerced. I had such a life altering reaction to Levaquin that it is very hard for me I feel like I am now labeled as the crazy & difficult CFS patient here and just want to go home.

Your dr probably just wanted to be home on a Saturday. They also do not always have time to sit down at the bedside of each patient. Their rounds would last too long.

@Sushi made a very good point about getting the drug as an inpatient, so your BP can be monitored. It provides you with a safety net so you can know if you can tolerate it, whether you will have adverse side effects. Your dr wants to make sure it is safe for you.

i think we all suffer from trauma (with varying degrees) from past interractions with physicians and health care professionals who just don't get our illness and don't understand how we feel. Nurses, you will have some nice ones, and you will have those who just want to get the business done and over with without a fuss. Sometimes they don't have time.

Once more, remember you are making some grounds. It is not always easy. Speed bumps are to be expected.
Hang in there and breathe

 

[Gingergrrl]

@Gingergrrl
Yes, they would have to be prescribed but you can give them yourself.

Be sure to get the physician's version of your TTT results before you leave. It will be helpful to Dr. K.

I'd say that it is good to try midodrine in the hospital as some do very well with it and some don't! I was one of the ones who didn't and would have been happy to be in the hospital. They will probably carefully monitor your BP for the time you are an inpatient.

@Sushi My cardio does not prescribe mag shots or use Taurine. He prefers mag IV's and said I will get another saline/mag IV today and they take 5-6 hours (not sure why?!!!). I am going to ask my ND if she does those shots. It turns out my mag & potassium are really low even though I already supplement with both!

I am going to get the results of the TTT and hopefully all the other tests from med records and will definitely show it to Dr K.

What issues did you have with Midodrine? I am starting off slow at 2.5 mg 2x/day and if I tolerate it, we go up to 5 mg 2x/day. He said it will take 2-3 days before I feel any affect or know if it will raise my BP. Nothing yet has ever raised my BP so not too worried about that but was curious what happened to you? My worst fear is of meds that give me tachycardia.

He is hoping if the Midodrine raises my BP, it will also help my shortness of breath. B/c if it raises my BP but does nothing for my SOB, I am not sure what the point is?

 

[Gingergrrl]

Your dr probably just wanted to be home on a Saturday.

@Sushi made a very good point about getting the drug as an inpatient, so your BP can be monitored. It provides you with a safety net so you can know if you can tolerate it, whether you will have adverse side effects. Your dr wants to make sure it is safe for you.

i think we all suffer from trauma (with varying degrees) from past interractions with physicians and health care professionals who just don't get our illness and don't understand how we feel.

Nurses, you will have some nice ones, and you will have those who just want to get the business done and over with without a fuss. Sometimes they don't have time.

Once more, remember you are making some grounds. It is not always easy. Speed bumps are to be expected.
Hang in there and breathe

@Kati My cardio is actually working this entire weekend in the hospital which was why he wanted me to come in (but then the whole plan and date changed with the insurance denial.)

I totally agree with Sushi's point about it being safer to try Midodrine in the hospital and am grateful for the opportunity. I was just frustrated b/c I wanted to know what the TTT showed beyond it being positive and the cardio had mentioned 5-6 options to me but then suddenly said the only option was Midodrine so it was confusing.

I also got agitated from the ACTH stuff that they injected into my IV although not to the level of the over methylation incident. My body just does not process things well that normal adults can process.

I definitely have tons of trauma from past physicians which clouds my current interactions (as I know everyone on this board has, too.). My cardio came back and took my hand and said jokingly, "Are we still friends?" and I said, "of course" and then we were able to talk about the Midodrine a bit more.

As far as the nurses, I know there are amazing ones and terrible ones just like with every profession and I know @Kati you are one of the amazing ones so I hope my comment was not offensive and I didn't mean it that way!

I know I am making ground and thank you for reminding me of that. I just thought I was going home tonight so had to change the arrangements for my daughter and my doggie and it's been really stressful. My husband is staying overnight w/me in hospital tonight so feeling less worried if I have a bad reaction to I Midodrine.

 

[Sushi]

@Gingergrrl

You could ask Dr. K for a prescription? It isn't an unusual thing for ME/CFS patient to get these shots. I think Dr. Cheney prescribed them routinely for his patients.

I took Midodrine successfully at a low dose for 2 weeks and then, with no warning, it caused a spike in BP that was quite frightening. BTW, I had a response from the first dose.

Sushi

 

[Kati]

@Gingergrrl not offended, it is what it is. There are many reasons why nurses, doctors and people in general can be rude. There are many 'agendas' if you will, at stakes. Nurses follow orders from physicians. Their work load usually includes very sick patients and their schedule is usually pretty tight.

Of course when we come from 'the other side' we have needs that are much different and the journey is a tough one.

 

[WillowJ]

He is hoping if the Midodrine raises my BP, it will also help my shortness of breath. B/c if it raises my BP but does nothing for my SOB, I am not sure what the point is?

my SOB improved when my BP improved, but I used florinef. I did not have TTT (apparently no one does that, in my corner of the world)

Good thought to see your allergist/immunologist about more lung tests, as asthma is common in ME patients, and there is nothing that says your symptoms have to be from only one cause (being that this is us, two is actually more likely, IMHO). If you cough or wheeze when you talk on the phone, that's a red flag for asthma. Getting asthma meds was one of the best things I ever did.

 

[xchocoholic]

Hi @Gingergrrl . I just wanted to take a minute to cheer you on. You've made phenomenal progress in the last week. Add that to what you'd already accomplished medically this year and you're way ahead of the pack. You're getting answers most of us never got.

Imho, you're dealing with all this much better than most of us could.

Between lack of sleep, the chemicals and tests that you're being subjected too, the change in plans and being stuck in a hospital you've been thru enough to make most people cry.

Based on your cardiologists comment, it still sounds like you're in good hands tho.

Hope you get some rest tonight and enjoy your hubby's company.

Tc ... x

 

[Gingergrrl]

@WillowJ I definitely do not have asthma and have been assessed for this before. I have zero coughing, wheezing, congestion, etc. when I say "short of breath" it is a feeling of breathlessness as if I had run up several flights of stairs and it takes a good ten minutes at least to catch my breath back.

The worst is when I am walking and carrying something at the same time or when I lift my arms over my head such as to use a hair dryer or get a plate from the cabinet. It can happen if I am talking a lot but not quite to the same degree.

I definitely could not use inhalers or anything that speeds up your HR and have horrific reactions to epinephrine. Actually my shortness of breath sort of feels like epinephrine.

But I want to thank you for the suggestion and I know you mentioned it earlier and I apologize I did not get to respond then.

 

[WillowJ]

But I want to thank you for the suggestion and I know you mentioned it earlier and I apologize I did not get to respond then.

no worries. I'm glad you're getting tests that are appropriate to your situation.

 

[Kati]

@WillowJ I definitely do not have asthma and have been assessed for this before. I have zero coughing, wheezing, congestion, etc. when I say "short of breath" it is a feeling of breathlessness as if I had run up several flights of stairs and it takes a good ten minutes at least to catch my breath back.

The worst is when I am walking and carrying something at the same time or when I lift my arms over my head such as to use a hair dryer or get a plate from the cabinet. It can happen if I am talking a lot but not quite to the same degree.

I definitely could not use inhalers or anything that speeds up your HR and have horrific reactions to epinephrine. Actually my shortness of breath sort of feels like epinephrine.

But I want to thank you for the suggestion and I know you mentioned it earlier and I apologize I did not get to respond then.

Hi @Gingergrrl the symptoms you are describing are very similar (if not exactly like) what I have experienced in the early years of my illness. Occasionally I will have SOB, but It's unusual, possibly because I have learnt to avoid the offending activities, and possibly due to the low dose atenolol I have been on.