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

[Gingergrrl]

@Sushi, I was just curious b/c I know there are many people living alone (and even those who don't) who may love get some extra good wishes on their b-day. Maybe we could have a system where people can input their b-day into PR (without the year of course and again only those who choose) and then PR can keep track and post a greeting. I don't know if this is possible or creates too much extra work?

 

[Sushi]

@Sushi, I was just curious b/c I know there are many people living alone (and even those who don't) who may love get some extra good wishes on their b-day. Maybe we could have a system where people can input their b-day into PR (without the year of course and again only those who choose) and then PR can keep track and post a greeting. I don't know if this is possible or creates too much extra work?

There are so many good ideas that we would like to implement but, we need more volunteers! Would you like to be a point person to help work out how to do this?

Sushi

 

[Gingergrrl]

@Sushi I actually would love to help with this but I have absolutely zero computer skills. But I could start a thread manually re: birthdays and then anyone interested could post their birthday and I will keep a record and then on that day, I could create a special thread for them. I really would be happy to do this but if it involves technical computer skills, I don't know how! Maybe that thread could also be tacked to the top of the community forum (so we don't have to search for it) and members (old and new) can add their birthdays there?

 

[Sushi]

@Gingergrrl

Let's move over to a conversation.

Sushi

 

[Gingergrrl]

@ Sushi I responded to the conversation and we can discuss it over there which was a great idea.

 

[Gingergrrl]

I know this thread has gone off topic in a million different ways (my own fault!!!) but I wanted to give an update re: my cardiology situation.

I have my two week follow-up appt from my hospitalization with my cardio tomorrow and have a million questions for him and hoping I will be allowed enough time to ask them.

Yesterday I saw my Endo, who treats my thyroid/Hashimoto's, and had not seen him since July so I updated him on everything (my trips to OMI, new meds, new cardio, treadmill test showing ischemia, hospitalization, etc.) He was very concerned by how much weight I'd lost, by my shortness of breath, and by how slow I walk now.

He wondered if I could have this thing called "Microvascular Angina" which also has other names such as "Cardiac Syndrome X" and "Small vessel disease." He in no way was diagnosing me or saying that I did have it but wrote a note for me to give to my cardio at my appt tomorrow inquiring about this.

I was not familiar with it so of course I Googled it for hours as soon as I got home and didn't get much sleep last night. One website I found had a scale called the "Duke Activity Status Index" which measures a persons disability and their peak oxygen uptake. It had a list of 12 activities asking if the person could do them and I could really only do 2-3 of the things on the scale of 12 which made me realize again how impaired I am.

Granted this was a generic scale and my answers could equally apply to ME/CFS versus "Microvascular Angina." It just scared me though, because I do not want to go on another wild goose chase with a bunch of tests that my insurance will never authorize that will probably not even disclose anything new. To make it even worse, the treatments for "Microvascular Angina" all involve meds that decrease your BP and I am in the process of trying to raise my BP with Midodrine.

Lastly, even though my new cardio does not know much about ME/CFS, I do feel that he is incredibly knowledgeable re: cardiac issues and if I was in the hospital for five days, it seems that he would have at least mentioned this "microvascular angina" to me as a possibility and he didn't. I know my Endo meant well and he is very smart which is why his question scared me. So I am going to ask my cardio about it and give him the note from my Endo even though I had really wanted to focus on a bunch of other questions.

Has anyone else ever been diagnosed with this or had it mentioned as an option? I guess my Endo mentioned it b/c I had ischemia on the exercise EKG (treadmill test) but then my CTA was clear with no blockages.

I really do not want to have a separate cardiac issue on top of the viral and autonomic stuff (which somehow is easier for my mind to deal with.) Thanks in advance for any feedback. I talked to @zzz about it and your feedback was very helpful (zzz, I hope you don't mind me saying that!)

 

[taniaaust1]

I don't actually know whether there's a significance to finding it difficult to mouth breathe. (any possibility they forgot to open the valve?)

lol thanks. That made me laugh, Ive seen enough of hospital mistakes to imagine a nurse doing that.

A muscle strength test seems to be an unusual test to run, and unless your ME doctor ordered it, it's unlikely unless you had myasthenia gravis -type episode(s) where had significant respiratory distress, or they suspect another muscle weakness like musclular dystrophy, or unless you specifically ask (which you might like to do if your lungs feel weak sometimes).

My ME/CFS sister, when she had a lung function strength test done, she was found to be very weak in this area (it may of been only something 80% of normal). I havent had that test (she gets a lot of breathlessness with her ME/CFS)
.................

Gingergrrl it sounds like you paniced due to it feeling a bit different with your nose clipped.

If one takes a breath throu the mouth, if you consider the anatomy, there is actually more room in the passage ways throu mouth then with the tiny amount of room if it has to go throu it has to go throu the nostrils. The air no matter how you breath it goes down the larynx (throat) to the lungs. There should be nothing anatomy wise making the breathing harder to do as far being able to get air in, when one has a peg on nose..

Maybe get yourself an anatomy book and study this for yourself and then convince yourself that the different breathing sensation is okay and cant hurt you. (You could practice it at home to make sure you dont panic again next time). Best luck.

 

[taniaaust1]

@Sushi Tomorrow I am going to skip Florinef and see if this makes a difference for the headache/pressure. I have taken Florinef since July with no benefit that I can see

Im surprised you stayed taking it if it wasnt helping at all or didnt have it increased a lot earlier.

Florinef is one of those drugs that if you reach right dose, it will help right away (same day). One may take it at a low dose for a couple of weeks, test potassium levels at that dose, then step it up some more, test potassium etc till up to a certain amount .. until one has worked out the correct dose which helps or finds that one has reached an amount that causes negative reaction..or just reached the upper limit without any effect.

The very good doctors tell those they put onto Florinef, to eat a banana per day for potassium, to hopefully avoid any potassium issues.

 

[taniaaust1]

The worst part is the guilt of how my illness affects my family and those around me.

nods, yeah. Yesterday I felt so terrible as my over 80 year old friend, had to push me over weeds and grass, in a wheelchair not suitable for doinggthat with (I'd collapsed) and he's got a painful hernia.. he was struggling so much to push me but I just couldnt walk. Its sometimes a bit of a nightmare knowing what we are putting others around us throu.

 

[taniaaust1]

Florinef and midodrine also may interact. For example, the following is from the drug interaction checker at Drugs.com:

The interaction between these two drugs re higher BP .. is the very reason why they both together are sometimes used.

You seem to have already guessed at this interaction based on what you said about what happened when you doubled your Florinef dose.

I may have this wrong but I thought she said her BP was still quite low (not high anyway)? with the symptoms, so I doubt that it was caused by that interaction. Im yet to read this whole thread so havent read yet what the outcome of stopping Florinef was for Gingergrrl but Florinef by itself on dose increase commonly can cause the exact new symptoms she described and as she said she'd just increased that (doubled), that alone is a likely cause to be the casue of the new symptoms.

 

[taniaaust1]

@zzz thanks for explaining all that and I asked my CFS doctor about plasma renin test and he said this would be good. He also wants to test for vasopressin? Is this related? I apologize if I already asked you this?!!

I am pretty sure I am going to stop Florinef regardless as I have taken it since July with no benefit that I can see. My cardio had me double the dose from 1/4 to 1/2 pill (which I know is still low) but it increased the pressure in my head and I had dizziness & vertigo which was new for me.

But even with the Midodrine & Florinef together, it still did not raise my BP. I went back to 1/4 Florinef today but really think I just want to stop it and see how I react to Midodrine without it.

I have a feeling that the dysautonomia meds will take a long time to sort out and trying not to get frustrated.

Nods yeah if are getting dizzines and vertigo from it, its not the right drug for you. Half a pill I wasnt even sure if I could notice a difference, it took 1 pill for me to do (Im needing more then 2 pills) but to increase would be to cause yourself more issues.

Dysautonomia doesnt necessarily take a long time to sort out, its the luck of the game but also depends a lot on a persons doctor too as many dysautonomia drugs are fast acting, so one can quickly see if they will be right or not (unlike things such as anti-depressants in which it can take a couple of months to tell) .

If your doctor had ben more on the ball, you would of been on the 1/4 Florinef for only a couple of weeks (taking with a banana for potassium daily as Florinef can cause low potassium) before going to the 1/2 Florinef pill and trying that .. and then Florinef trial stopped if you either werent helped or had negative symptoms frrom it as you had..

 

[Gingergrrl]

@taniaaust1 Thanks for all your great feedback and support in going back and reading my hospital thread and it was very kind of you to do that! I want to try to address all your questions.

As far as the breathing test, I definitely did panic with the nose clip and felt I couldn't breathe but this was combined with the fact that my BP at the time was really low and I had been in the hospital for five days of tests and really fatigued. I did one attempt with the breathing machine but my breath was so low it did not even register!

When I see my cardio tomorrow for the two week follow up I am planning to ask him if he feels I should attempt the breathing tests again and if they showed impairment, which I know they will, then what would the treatment be?

As far as the Florinef, I have completely stopped it about a week and a half ago. I realized that three months was more than an adequate trial and that it never helped me and just gave me headaches. It was prescribed by my former cardio who said my potassium level was fine but my new cardio said it was so low he prescribed prescription potassium pill and I have to drink Pedialyte every day!

The Midodrine has really helped me though and I am able to stand more, walk more and just do more overall. It does not always raise my BP which makes me think I need a higher dose and I am open to trying that.

As far as guilt, it sounds like your friend is choosing to help you, and that is his choice to make, so I do not think you should feel guilty. My dad is also 80 yrs old and he helps me a lot and I often feel incredibly guilty so it is easier for me to give advice than to take it myself!

 

[MeSci]

If your doctor had ben more on the ball, you would of been on the 1/4 Florinef for only a couple of weeks (taking with a banana for potassium daily as Florinef can cause low potassium) before going to the 1/2 Florinef pill and trying that .. and then Florinef trial stopped if you either werent helped or had negative symptoms frrom it as you had..

It puzzles me that banana always seems to be recommended for potassium. There are lots of foods that are higher in potassium than banana according to this page.

(Can't stand bananas myself, but then I seem to tend towards high potassium rather than low!)

 

[ahimsa]

It puzzles me that banana always seems to be recommended for potassium. There are lots of foods that are higher in potassium than banana according to this page.

(Can't stand bananas myself, but then I seem to tend towards high potassium rather than low!)

I completely agree that bananas as a potassium source are overrated. Not that they are bad, just that some folks think of them and no other foods.

I think bananas are mentioned mostly because they are convenient to eat -- no cooking, no packaging, and not very messy, you just have to throw away the peel. And I think most people like them.

Thanks for a link to a table with other foods. But I had a bit of trouble trying to read the data from the table.

For those folks who don't like bananas, and don't want to take supplements (or mix up their own electrolyte drink), here's another list of foods that are high in potassium:

http://www.healthaliciousness.com/articles/food-sources-of-potassium.php

My own diet (vegetarian) is made up of a lot of beans and leafy greens. So it's naturally rich in potassium. And yet I still need potassium supplement (time released prescription, K-Dur, 10 mEq daily). I also mix up an electrolyte drink now and then -- sort of a homemade version of unflavored Pedialyte.

 

[MeSci]

Thanks for a link to a table with other foods. But I had a bit of trouble trying to read the data from the table.

The food are listed in order of the amount of potassium they contain per 100g. So for example, seaweed has 7500 mg (7.5g) per 100g, dried fig has 1010 mg (1.01g) per 100g, etc.

HTH

 

[ahimsa]

The food are listed in order of the amount of potassium they contain per 100g. So for example, seaweed has 7500 mg (7.5g) per 100g, dried fig has 1010 mg (1.01g) per 100g, etc.

Thanks for your response. I got the general idea but was having major brain fog when I tried to actually use the table. It's probably just me.

I'm not good at estimating how much something weighs, whether it's ounces or grams. Without some sort of volume measurement (cups, liters) then I'm kind of lost.

So, reading that instant coffee powder (third item on the list) has 4000 mg potassium per 100 grams means pretty much nothing to me. How many cups does that make?

What I need to know is how much potassium is in a serving (say, one cup? or 250 ml?) of instant coffee.

Yeah, I know that instant coffee is not an ideal source for potassium! It was just a convenient example of how the table was hard for me to use. I'm sure others would not have as much difficulty with it.

 

[WillowJ]

Thanks @JAM and @rosie26 and you are most certainly not late! I am not celebrating w/my family until next weekend and pretend Oct is my whole b-day month LOL.

I wish we had a list or system of all the PR birthdays (for those who chose to participate of course) so everyone could get b-day wishes. @Sushi Has this ever been attempted?

then I will say happy birthday!!! (rather than belated birthday) I hope you have a very nice birthday month. You deserve a good month.

 

[MeSci]

Thanks for your response. I got the general idea but was having major brain fog when I tried to actually use the table. It's probably just me.

I'm not good at estimating how much something weighs, whether it's ounces or grams. Without some sort of volume measurement (cups, liters) then I'm kind of lost.

So, reading that instant coffee powder (third item on the list) has 4000 mg potassium per 100 grams means pretty much nothing to me. How many cups does that make?

What I need to know is how much potassium is in a serving (say, one cup? or 250 ml?) of instant coffee.

Yeah, I know that instant coffee is not an ideal source for potassium! It was just a convenient example of how the table was hard for me to use. I'm sure others would not have as much difficulty with it.

Sorry - you'll have to find another site!

 

[foxy loxy]

am pretty sure I am going to stop Florinef regardless as I have taken it since July with no benefit that I can see. My cardio had me double the dose from 1/4 to 1/2 pill (which I know is still low) but it increased the pressure in my head and I had dizziness & vertigo which was new for me.

Gingergrrl,
I find your case interesting.. You almost sound like me. I also have pressure in my head. (and other sensations that are quite horrible) Haven't found anyone with this problem! Interesting you had/have dysautomonia. Recently, my Lyme dr. found my heart rate speeds thirty or more beats from laying to standing.

I am going for the tilt table test in a few weeks. You may say later in this thread, but have you found relief of these symptoms? Anything you could advise me on? Thanks!

 

[Gingergrrl]

Roxanne, sorry I cannot be of help at the moment but wish you the best. Am too ill to figure out your questions or how to advise! I apologize.