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

[Gingergrrl]

This is both on topic and off topic and might need to be expanded in another thread if people want to discuss it.

A friend was denied insurance coverage for a stem cell transplant to stop and reverse his downward spiral toward death with progressive MS. He borrowed money and got the transplant and is well on his way back to health. He did extreme advocacy re: his insurance claim and it went all the way to a feature in the NY Times and celebrity endorsements. A few weeks ago he got full reimbursement--plus interest!--and an apology from his insurance company. That $402,000, folks!

He tells the story in this video:

@Sushi, I just watched your video b/c I couldn't access it in the hospital and it brought tears to my eyes and gave me chills. Good for your friend for taking on his insurance company and it inspired me that I will get back to social work and advocacy for CFS when I am better. Your friend is a true inspiration!

 

[Gingergrrl]

Somewhere online there is a great list of all the drugs used for the various forms of dysautonomia. If I come across it again, I'll give you the link as by that info you probably will understand more why your doctor suggested trialing the Midodrine over others.

@taniaaust1 If you ever find that list of the different drugs used for the different forms of dysautonomia, I would love to see it! Thank you so much in advance and I really appreciate it. No worries, though, if you can't find it.

 

[WillowJ]

@WillowJ I am responding to an earlier post but wanted to ask you a follow-up question. Yesterday before I left the hospital they did try to do a breathing test on me (I assume it would measure muscle strength of my lungs?) but I was too weak and dizzy to even attempt it. I was asleep and they woke me up to try the test but my BP was really low at the time. I blew into the machine and it didn't even register!

They said I had to wear this clip on my nose so the breathing only came through my mouth but as soon as they put the clip on, I felt like I couldn't get any air and panicked. The technician was worried I could faint if I attempted the test (although I have never fainted in my life) so he canceled it. My cardio said it was okay and we could always try this test in the future as an outpatient.

I was wondering how you would interpret this as I know you have a lot of knowledge re: lung issues. On all the other tests (ventilation & perfusion scan, arterial blood gas test, etc, of my lungs were clear and numbers were normal.) Thanks in advance for any info.

The clip on the nose is standard for pulmonary function tests (to limit where you breathe, so they can measure everything). The air feels different inside the "phone booth", and with the clip, breathing through plastic tubes, and whatnot, it can be hard to get used to.

I find those tests extremely tiring, and do tend to make me more dizzy; if you were already tired and lightheaded, and you have breathing issues for any reason (dysautonomia, cardiac, lung, whatever) it's no wonder you found them difficult.

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?)

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).

There are some different strength tests: there is one where you clip your nose, then pant into a tube and partway through they block the air supply for a few seconds and measure how well you can push it in and out with just the air left in your lungs.

Then there are ones where they separate breathing in and out into a different test and block the air for a moment in each test, while you are breathing as hard as you can, one way or the other.

http://www.cincinnatichildrens.org/health/p/pulmonarytest-musclestrength/

 

[WillowJ]

@WillowJ I am responding to an earlier post but wanted to ask you a follow-up question. Yesterday before I left the hospital they did try to do a breathing test on me (I assume it would measure muscle strength of my lungs?) but I was too weak and dizzy to even attempt it. I was asleep and they woke me up to try the test but my BP was really low at the time. I blew into the machine and it didn't even register!

ps, sorry you felt so poorly!

 

[IreneF]

I find that the unflavored Pedialite is much easier to drink. The big pharmacies all have their own generic brand of Pedialite. I don't drink it every day but keep it on hand for emergencies. It is also is much easier to drink cold.

Sushi

I used to drink stuff called E-lyte. It was an electrolyte replacement, had no sugar. I don't remember what it tasted like.

 

[zzz]

@taniaaust1 If you ever find that list of the different drugs used for the different forms of dysautonomia, I would love to see it! Thank you so much in advance and I really appreciate it. No worries, though, if you can't find it.

I found three sites that each appeared to have somewhat different, but useful, information on drug and other treatments for dysautonomia.

The first is a straight list of medications from the reputable site Drugs.com. Initially, the most popular 20 medications are displayed, but you can expand the list to all 44. Links to each of the medications are provided, along with user reviews of a few of the most popular ones.

The second is an extensive list of dysautonomia treatment types (mostly different drug classes) at MedHelp.org. For each treatment type, there is a list of Pros, Cons, and Side Effects; when the treatment type consists of more than a single drug, there is an Examples category that lists some or all of the drugs in that treatment type.

The third is a more detailed list of drug and non-drug methods for the treatment of POTS; it can be found at the Dysautonomia Information Network.

Happy reading, and I hope you're recovering well from your hospital adventure!

 

[MeSci]

I used to drink stuff called E-lyte. It was an electrolyte replacement, had no sugar. I don't remember what it tasted like.

That looks OK. (also on Amazon) No sugar and no caffeine (I see that Nuun has caffeine). I know some people swear by sugar to aid absorption, but I avoid it as much as possible as my body really doesn't seem to like it.

 

[Gingergrrl]

@MeSci there are many different versions of Nuun (here in LA there are probably 10-15 kinds) and I only buy the tablets without the caffeine and am obsessive in checking each pack before I buy it!

ETA- it is the same with the Salt Stick tablets and there is a version with caffeine and a version without.

The Pedialyte (at least the one we have so far) does not have sugar but has Splenda- artificial sweetener- which I cannot stand the taste of! It is some nasty stuff!

@IreneF thank you also for posting about e-lyte and I was not familiar with it.

 

[Gingergrrl]

@zzz Thank you for all the dysautonomia links and I just read through everything. It was interesting and very helpful. It talks a lot about "low plasma renin." Do you know what that means and which tests measures it?

I am now on Atenolol, Florinef & Midodrine although all at much lower doses than in the links.

 

[Sushi]

@MeSci

The Pedialyte (at least the one we have so far) does not have sugar but has Splenda- artificial sweetener- which I cannot stand the taste of! It is some nasty stuff!

That is one reason I prefer the unflavored--it just tastes like slightly odd, mildly salty water.
Sushi

 

[vli]

I used to drink stuff called E-lyte. It was an electrolyte replacement, had no sugar. I don't remember what it tasted like.

This is a long shot since it is a UK product (I don't know if you are in the UK?) but youwouldn't be talking about this product would you?
http://eletewater.co.uk/products/elete-240ml-bottle

 

[Gingergrrl]

Actually this morning I mixed half Pedialyte with half water and lots of ice and it was not too bad! But this afternoon I started to feel shaky/dizzy and not nearly as good as yesterday and my BP was only 89/54 when we checked. How many hours is Midodrine supposed to last? I am now wondering if instead of increasing the dose to a higher level 2x/day, if I should take the lower dose more than 2x/day? I will wait until my follow-up appt with cardio and not make any changes on my own.

 

[Sushi]

@Gingergrrl

Metabolism[edit]
After oral administration, midodrine is rapidly absorbed. The plasma levels of the prodrug peak after about half an hour, and decline with a half-life of approximately 25 minutes, while the metabolite reaches peak blood concentrations about 1 to 2 hours after a dose of midodrine and has a half-life of about 3 to 4 hours. The absolute bioavailability of midodrine (measured as desglymidodrine) is 93%.

 

[Gingergrrl]

@Sushi, does that mean that the full Midodrine dose is basically out of your system in four hours? Not sure if I am reading it correctly? My cardio said to take it at 7 am and 7 pm but after discussing it with him in the hospital, I am taking it more like 8:30 or 9:00 am and 6:00 pm. Does this schedule make sense to you?

I might start a new thread on Midodrine or find an old one and re-activate it b/c I want to learn more about others experiences with it.

 

[Sushi]

@Sushi, does that mean that the full Midodrine dose is basically out of your system in four hours? Not sure if I am reading it correctly? My cardio said to take it at 7 am and 7 pm but after discussing it with him in the hospital, I am taking it more like 8:30 or 9:00 am and 6:00 pm. Does this schedule make sense to you?

I might start a new thread on Midodrine or find an old one and re-activate it b/c I want to learn more about others experiences with it.

As I understand it (which may be wrong!), half the active dose is out of your system in about 3 to 4 hours. When I had the bad experience with it, it took more like 6 hours to get through it.

As far as your dosing schedule, a more typical schedule would be 8 - 9 am and again about 2 pm, so that the effect doesn't entirely wear off and also so that it is out of your system before you go to bed, as you are not supposed to have it active when you are lying down.

There are old threads on Midodrine so it is much better to reactivate one than to start a new one--keeps the information in one place.

Sushi

 

[IreneF]

This is a long shot since it is a UK product (I don't know if you are in the UK?) but youwouldn't be talking about this product would you?
http://eletewater.co.uk/products/elete-240ml-bottle

No, it's different stuff. There are two kinds: E-lyte and E-lyte Sport, made by BodyBio. I don't know what the difference is.

 

[xchocoholic]

Hi @Gingergrrl

Good to hear you're back home. Your hospital experience convinced me that I don't ever want to get hospitalized again. Lol.

I'd forgotten about the cold room, noise, constant monitoring, having iv's, fear of unknown tests, etc. If I ever have to be hospitalized again, I'll need a tranquilizer for sure. Bring on the valium. Lol.

Not to be a pest but I wanted to ask you to summarize your test results so far. It's been interesting watching someone get the medical care that most pwcs would love to get BUT I was curious as to what came out of it. And would you recommend this for others ?

Thanks. X

 

[Gingergrrl]

As I understand it (which may be wrong!), half the active dose is out of your system in about 3 to 4 hours. When I had the bad experience with it, it took more like 6 hours to get through it.

As far as your dosing schedule, a more typical schedule would be 8 - 9 am and again about 2 pm, so that the effect doesn't entirely wear off and also so that it is out of your system before you go to bed, as you are not supposed to have it active when you are lying down.

There are old threads on Midodrine so it is much better to reactivate one than to start a new one--keeps the information in one place.

@Sushi Everything you said makes sense and today I am going to try the second dose around 3 pm today instead of waiting for 6 or 7 pm. The cardio and his assistant in the hospital gave me a lot of room to test this out so I think it is okay what I am trying.

Yesterday I felt better and did some errands with my husband but when we got home I was exhausted and needed to lie down. It was around 6 pm but then I would not have been able to lie down if I was just taking the 2nd Midodrine dose so I skipped it. By 8-9 pm I had gone to bed for the night, I was so exhausted and really did not sleep much over the five days in the hospital.

So today, I am going to try the schedule like you recommended and I think it will work much better. I am not increasing the actual dose (2.5 mg) until my follow-up appt w/cardio on Oct 10th.

And I will revive an old Midodrine thread later and not create a new one so things stay in one place like you said.

Sushi, I also wanted to ask you, did you always have low BP prior to Midodrine and your horrible reaction or did you occasionally have fluctuating or higher BP? Mine literally never goes above 90's/60's (and often 80's/50's) so I am hoping this means I will not have the bad reaction but who knows?!!!

 

[Sushi]

@Sushi
Sushi, I also wanted to ask you, did you always have low BP prior to Midodrine and your horrible reaction or did you occasionally have fluctuating or higher BP? Mine literally never goes above 90's/60's (and often 80's/50's) so I am hoping this means I will not have the bad reaction but who knows?!!!

Fraid I always had low BP. The only variation was in very hot weather when it would go even lower than my normal low.

Sushi

 

[Gingergrrl]

Fraid I always had low BP. The only variation was in very hot weather when it would go even lower than my normal low.

@Sushi Thanks and I was just curious. I have had a headache and horrible pressure in my head all day but I actually think it is b/c the cardio had me double my Florinef vs. from the Midodrine. The last two days I didn't even end up taking the second dose of Midodrine. 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 whereas I did feel some benefit from Midodrine. I am taking too many things to tell what is from what at the moment and it is getting frustrating. It is also really hard to swallow the Potassium pill b/c it is so massively large.