Midodrine Dose

[SOC]

Care should be taken with HR control. If anyone thinks they may have hyperadrenergic (among many other possible names now) POTS related to mast cell issues, beta-blockers are known to trigger POTS episodes. I tolerated bisoprolol 1.25-2.5 mg well, but it worsened my fatigue. They will reduce blood volume over time by reducing renin levels. There are also some issues with certain beta-blockers messing with mitochondrial function in the heart (thanks to adreno for this), but I'm not sure about the details.

Calcium channel blockers (CCB) such as diltiazem (verapamil is sometimes said to be more cardiac specific, but one study found that only diltiazem did not cause downward displacement of blood volume) that are specific for cardiac muscle tissue might be a better choice, although most people seem to ditch them after a while.

Of course a specialist in autonomic dysfunction would be best. So hard to come by.

If you have some scientific evidence for these statements, it would be helpful if you would put links to them so members can judge the value of the evidence for themselves.

I take a CCB and haven't felt the need to ditch it yet.

 

[SDSue]

@SDSue,
Are you taking anything for HR control yet? Might that help? You might be able to take less of the midodrine that way...?

My BP climbs for up to 6 weeks after I PEM myself. Could that be the reason for your BP spike? If so, you might be able to go back on the midodrine once you get over the crash.

I'm beginning to wonder if this is a PEM thing in addition to the midodrine? This morning, with no midodrine for 24 hours, BP is high again - 146/96. What a balancing act this is becoming, especially with my reduced kidney function.

Does your BP climb during PEM enough to need intervention, @SOC?

With no blood work during TTT, is there a way to determine/assume we're dealing with hyperadrenergic POTS? @Sushi is it the norepi that is affected by Straterra? Thanks.

 

[SOC]

Does your BP climb during PEM enough to need intervention, @SOC?

No. It went up to 150/100 for a while then settled for 2 weeks until it was around 135-145/95 with fluctuations from day to day. My BP would be 143/103 one day and 125/85 the next, so not really high, just averaging in the AHA hypertension stage 1 range. After 6 weeks of staying in the hypertensive range, I cut back my florinef dose to get my BP back in normal range. Now, 3 months after I PEMed myself my BP is dropping again and I'm noticing OI symptoms, so I may have to go back up on the florinef again.

 

[Seven7]

@SDSue it took me 2 years to go to that dose. I think you were too high too fast. I would break one pill in 2 and start there once a day and do not go up until you are used to it. Do not lay down on it and Hydrate Hydrate....

When my BP goes that high is because I have overdone it. With midodrine is easy to forget the CFS so my BP skyrocket if I do not watch it.

 

[Seven7]

I'm beginning to wonder if this is a PEM thing in addition to the midodrine? This morning, with no midodrine for 24 hours, BP is high again - 146/96. What a balancing act this is becoming, especially with my reduced kidney function.

Does your BP climb during PEM enough to need intervention, @SOC?

With no blood work during TTT, is there a way to determine/assume we're dealing with hyperadrenergic POTS? @Sushi is it the norepi that is affected by Straterra? Thanks.

midodrine only lasts 4hours in your system so if your BP is still high it can be something else.

 

[Sushi]

With no blood work during TTT, is there a way to determine/assume we're dealing with hyperadrenergic POTS? @Sushi is it the norepi that is affected by Straterra? Thanks.

Yes, at least if a good autonomic specialist has set up the test and is reading it. There is some research showing damage to the peripheral norepi receptors and yes, strattera works on norepinphrine. I was surprised that it worked so well (magic for me) but it only works in an undetermined percentage of patients.

I was given a very low dose--I think 10 mg twice a day--and it took me a month to work up to that dose. I had to start with 1/3 capsule every other day to get used to it. Most docs don't titrate the dose up just tell you to start with the full dose--that can bring pretty bad side-effects for many.

Sushi

 

[Sushi]

Care should be taken with HR control....

Calcium channel blockers (CCB) such as diltiazem (verapamil is sometimes said to be more cardiac specific, but one study found that only diltiazem did not cause downward displacement of blood volume) that are specific for cardiac muscle tissue might be a better choice, although most people seem to ditch them after a while.

Of course a specialist in autonomic dysfunction would be best. So hard to come by.

My cardio gave me diltiazem to have on hand for atrial fibrillation. It works very well to lower HR and BP without (for me) any side effects that I notice....but I only use it when I get Afib as my HR is very low usually. Though it might be a good drug to ask your doc about if you get into a high HR, high BP situation sometimes.

Sushi

 

[SDSue]

This all has me wondering, as there are 4 possibilities:

1.LDN - I could have easily gotten extended release (am changing to INIM rec'd pharmacy next refill) and wonder if that could raise BP. Anyone know?
2. Inosine (taken M-F with weekends off)? I stopped it on Friday and BP spiked within 24 hours.
3. PEM confounder, as @SOC suggests.
4. It's just part of dysautonomia. My BP is all over the place lately.

It's amazing how quickly I'd forgotten how crappy I feel with untreated POTS. It's all coming back to me now lol.

 

[Gingergrrl]

@SD Sue, I am so sorry this is all going on and had a few thoughts.

I briefly tried LDN a while back (and it did not work out for me for other reasons) but I got it from McGuff Compounding Pharmacy which is one of the top in the country and recommended by the LDN Association on their home page (or whatever they are officially called!) They deliver to your home and have pharmacists that answer all your questions. If you chose a random compounding pharmacy, you may not have received exactly what you thought.

Also, and I may have missed this part, but did your nephrologist or INIM say that you couldn't take any beta blocker due to the type of POTS you have (or did you try one and it didn't work or have side effects?) Low dose Atenolol works very well for me, and I used to take it as a PRN, but once I switched to taking it every morning regardless of POTS symptoms or not, I have had a significant improvement.

It could also be PEM (or at least part of it) b/c you had a few days where you really pushed yourself and did a lot. Hope it gets resolved soon and you are able to get some rest.

 

[DeGenesis]

If you have some scientific evidence for these statements, it would be helpful if you would put links to them so members can judge the value of the evidence for themselves.

I take a CCB and haven't felt the need to ditch it yet.

That's great that a CCB is working out for you! Are anecdotes allowed on this forum (not trying to be sarcastic), as long as it is obvious that it is so? On the DINET forums I read posts of several people who took a CCB and ditched it for one reason or another.

Here is the CCB comparison study. Verapamil, diltiazem, and another CCB that I haven't heard of was used:

Am J Hypertens. 1996 Jul;9(7):628-32.
Effects of calcium entry blockers on distribution of blood volume.
Oren S1, Gossman E, Frohlich ED.
Author information
Abstract

To evaluate the effects on hemodynamics and the distribution of blood volume of various calcium entry blocker (CEB) agents, we invasively studied 24 hypertensive patients before and after treatment with isradipine, diltiazem, and verapamil. All three agents reduced arterial pressure through a significant fall in total peripheral resistance without causing reflex tachycardia, while preserving stroke volume and cardiac output. Verapamil reduced the central blood volume (CBV) and the ratio of CBV to total blood volume (TBV) in the supine position (P < .05), suggesting peripheral venodilatation. Isradipine and verapamil modified the responses to head-up tilt. The orthostatic decrease in stroke volume was accentuated following treatment, and it was associated with a greater fall in the ratio of CBV to TBV, suggesting that these two agents attenuate the reflex venoconstriction induced by postural change. In contrast to verapamil and isradipine, diltiazem did not affect volume distribution in the supine or head-up positions. These results suggest that the effect of CEBs varies in order of venodilatory effect from verapamil to isradipine to diltiazem, with verapamil having the greatest effect.

PMID: 8806974 [PubMed - indexed for MEDLINE]

Post #43 contains a study about beta-blockers and mitochondrial issues.

http://forums.phoenixrising.me/inde...ta-blocker-for-p-o-t-s-is-working.3740/page-3

OP contains a study that talks about a possible mast cell disorder - hyperadrenergic POTS connection.

http://forums.phoenixrising.me/inde...rome-in-mast-cell-activation-disorders.18989/

EDIT: Rules conformation, changes made in earnest.

 

[Gingergrrl]

I am reviving this old thread as I want to hear as many current PR member's experiences with Midodrine as possible (good or bad!) I want to compare them to my experience with Midodrine thus far before my follow-up appt with my cardio on Oct 10th. I tried Florinef at all doses/combinations for three months but got no benefit (and got headaches/head pressure) so I decided to stop Florinef and see how I do just with Midodrine (and micro low dose of Atenolol.)

Here are my questions and I am very grateful for any responses! If you can only answer some questions but not all, that is okay!

1) How long have you (or did you) take Midodrine and overall has it helped?

2) What was your diagnosis that it was prescribed for?

3) What dose do you take and how many times per day? (I currently take 2.5 mg 2x/day with a plan to increase it by my doctor- not sure how I feel about this though!)
4) What side effects do you have?

5) Did you always have consistently low BP prior to starting Midodrine (never above 90's/60's) or did it vary?

6) Did Midodrine help to increase your BP?

7) Did it help in other ways? (i.e. Make it easier to walk without shortness of breath, etc.)

8) Is there anything else you would add for someone new to Midodrine?

9) ETA: I am adding one more question for those who take Midodrine- do or did you also have tachycardia or shortness of breath at any point?

Thank you so much for any info!

 

[Seven7]

1) How long have you (or did you) take Midodrine and overall has it helped? 3 years maybe, only a few months at right doses. GAME CHANGER! from a 3 to now from 8 to 9 (not constant I do crash here and there).

2) What was your diagnosis that it was prescribed for? Dysautonomia.

3) What dose do you take and how many times per day? (I currently take 2.5 mg 2x/day with a plan to increase it by my doctor- not sure how I feel about this though!) this dose I saw a difference but notice for sure at 5mg.

Now I take 10mg every 4h. On bad days I do 15mg every 4h (I have done up to 20).


4) What side effects do you have? I have not notice any. But I started too many things at once.

5) Did you always have consistently low BP prior to starting Midodrine (never above 90's/60's) or did it vary?
Low per nature. High when Crashed.

6) Did Midodrine help to increase your BP? Yes

7) Did it help in other ways? (i.e. Make it easier to walk without shortness of breath, etc.) Yes, Just toguht me for me what came from OI vs CFS... So the muscle weakness, muscle burning, Head feelings since i wanst getting enough blood there.....Any symptom brain/ balance/ concentration/ brain fog......

8) Is there anything else you would add for someone new to Midodrine? Start low, Slow, Increase if still symptomatic and BP allows, IF BP is high is better to cut back on salt, salt raises the BP but does not address symptoms as midodrine does. It does not last 4h necesarly, I start being symptomatic at 3h. so I plan around that. If I am working, out and about I take next dose.

Thank you so much for any info! [/quote]

 

[ahimsa]

1) How long have you (or did you) take Midodrine and overall has it helped?

I started taking Midodrine (brand name ProAmatine) in 2003. It is no cure but it has helped.

2) What was your diagnosis that it was prescribed for?

My diagnosis is Neurally Mediated Hypotension, often called Neurally Cardiogenic Syncope (syncope = faint) and a few other names.

Because I have never fainted in "real life" (only on the Tilt Table Test, after 20 to 30 minutes, no isoproteronol, just standing) then I prefer a diagnostic name that doesn't use the term syncope. Another diagnostic phrase that I've heard that seems to fit me well is Chronic Orthostatic Intolerance. But I think the term Orthostatic Intolerance is usually used as an umbrella term for POTS, NMH, and other diagnoses.

3) What dose do you take and how many times per day? (I currently take 2.5 mg 2x/day with a plan to increase it by my doctor- not sure how I feel about this though!)

I started with 5 mg twice a day. My biggest problem with that dosage was that the dosing was too far apart for me. I took it once in the morning and then again late afternoon. I felt so horrible when the drug was wearing off, right in the mid-afternoon when I was trying to get a few things done, that it was almost better to not take it at all! (if that makes any sense).

I quickly changed to 3 times a day, taken at approx 4 hour intervals, instead of the 6-7 hour interval that was originally prescribed. That made things better. I also reduced my fludrocortisone (brand name Florinef) to 1/2 tablet daily.

After several years I talked with my cardiologist and he agreed it was okay (based on my low BP readings, etc.) for me to try taking 5 mg of midodrine 4 times a day. That's what I am taking now. I take midodrine at about 3.5 or 4 hour intervals. I also continue to take fludrocortisone.

If I'm going to be lying down (migraine, going to bed early, flu/virus, etc.) then I skip one or more of my midodrine doses since it's not meant to be taken while lying down. And it really only helps me with being upright. It doesn't have any other benefit as far as I can tell.

4) What side effects do you have?

The only side effects I have noticed are the prickling of the scalp (thought I had spiders dropping on my head for about the first month) and having more urgency when needing to urinate. I do not have more frequency at all, which is funny since I drink approx. 3 liters of water a day (plus a cup or two of coffee). I just have a bit more urgency (no accidents or anything like that) when I do need to go.

5) Did you always have consistently low BP prior to starting Midodrine (never above 90's/60's) or did it vary?

My BP has always been consistently low. Even before I got sick (and was healthy as a horse, no problems with exercise, stamina, etc.) my BP was always low.

6) Did Midodrine help to increase your BP?

Not much at all. It just seems to stop (mostly, not completely) the big drops in BP.

I hope this helps!

No time to proofread now ... if I notice errors later I'll try to come back and fix them.

 

[Gingergrrl]

@inester7 and @ahimsa Thank you and your answers were really helpful. I added one more question and was curious if either of you had or have tachycardia or shortness of breath either before or after Midodrine?

 

[ahimsa]

@inester7 and @ahimsa Thank you and your answers were really helpful. I added one more question and was curious if either of you had or have tachycardia or shortness of breath either before or after Midodrine?

[My answer about tachycardia is complicated so I'll put it in another message -- this one is already getting too long!]

Yes, shortness of breath is one of my symptoms. It was worse when my illness first started (I've been sick since 1990). But I still get that symptom, usually as part of my PEM symptoms after I do too much.

It's more like feeling out of breath from running, like I can't catch my breath. There's no blockage, no asthma, nothing like that. It feels like I've just stopped running but my heart doesn't slow down to normal and my breath doesn't go back to normal.

It's hard to tell whether midodrine actually helped reduce this symptom or whether I'm just better at pacing myself. When I push myself then that symptom comes back.

The midodrine has definitely reduced the nausea that I used to feel, one of many pre-syncope symptoms that I used to get.

I should also add that midodrine helped me, indirectly, with my sleep. As far as I can tell, after a lot of observation and talking with my doctors, things that trigger symptoms for patients with Orthostatic Intolerance can also interfere with sleeping. It seems that when the autonomic system is messed up then having it irritated a lot during the day messes up sleep, too. (Sorry that I don't have a more technical way of describing this! )

In my case I am lucky that I have no problem falling asleep. So I don't have to take any sleep drugs. And I even fall back to sleep fairly quickly when I wake up. No anxiety, no worrying. My only problem is staying asleep.

If I have done things during the day which aggravate my NMH symptoms -- getting overheated, standing too long ("too long" = more than a minute or two), even sitting upright at a desk for a long time, etc. -- then I will get symptoms later on (or the next day) and also have worse sleep that night. On the other hand, if I have a day of complete rest, or a couple days in a row, then my sleep slowly improves.

On a good night (approx 8 hours) I wake up 3-4 times. On a bad night it is 10-12 times. So that means sleeping in 20-30 minute intervals. Not very restful. And for all I know I might actually wake up more times than that. But this is only what I'm conscious of.

I did have an "at home" sleep test, as a screening tool to see whether a full test was needed. It showed no apnea and good blood oxygen levels. So that was at least useful to rule out those problems. If I recall correctly the test did show some hypopnea because I think the overall result from the test suggested that I should have a full sleep study.

However, after the sleep specialist told me that she had never even heard of Orthostatic Intolerance (and she would not read the Johns Hopkins patient handout on NMH/POTS) then I didn't think it was worth doing a full sleep test with her. Long story short, I never had a full sleep test and would not even consider one unless the doctor at least had a basic understanding of how autonomic dysfunction might contribute to sleep problems.

 

[ahimsa]

@inester7 and @ahimsa Thank you and your answers were really helpful. I added one more question and was curious if either of you had or have tachycardia or shortness of breath either before or after Midodrine?

My tachycardia answer is a bit complicated.

(Edited to add a clarification, probably obvious to most folks, that the term "tachycardia" simply means "fast heart." There are many different causes for this problem.)

I have had one type of tachycardia that first started when I was 11 years old. It is not related to either NMH/POTS or ME/CFS (I don't think?). And my case has never been disabling, just annoying, and maybe a little bit tiring. It has never stopped me from anything. I got my degree, got a full time job in the high tech industry, got lots of exercise (hiking, weight lifting, and so on). I even climbed to the summit of Mt. Hood. Twice.

For me (people can have it to different degrees) this type of tachycardia is relatively infrequent and also a bit random. It might happen a couple times in one day or it might not happen for a few weeks in a row. It might last a few seconds or 45 minutes. Because of this it has never been caught on an ECG or holter monitor. But based on when I first got it, and how it starts and stops, and several discussions with doctors over the years, it's probably AV nodal reentrant tachycardia. It's like a short circuit in the heart.

Here's what it feels like. My heart is going along normally, say 70 beats per minute. Then on the very next beat it flips into going very fast, maybe 185-200 beats per minute. It usually makes me want to cough, like a reflex in my chest (not in the throat). Then after some time my heart flips back to a normal pace in a single beat, not gradually. This tachycardia never happens during exercise or exertion. It sometimes happens when I bend over slightly, say to pick up something. And a couple of times it has started while sleeping (it wakes me up, of course!).

What's funny to me is that this tachycardia problem sounds very scary to other people even though it's not a big problem for me. My husband completely flipped out the first time it happened. I said, "Here, feel my heart!" not realizing he would freak out. (It was before I had ME/CFS and was completely healthy and fit. But I still had to calm him down--he worries very easily but we were newly married so I didn't realize how much of a worrier he was)

But this minor problem is in no way disabling. It has happened to me at work during a conversation. The other person never even knew. I just excused myself and went to the ladies room until it went away. It once happened while I was giving a talk. I kept on going for another 40 minutes until my talk was finished. As I get older it is more tiring but it's still no big deal. It's nothing compared to ME/CFS/NMH/POTS/whatever the hell combination of diagnoses that cause my primary symptoms.

On the other hand, the tachycardia (POTS) from Orthostatic Intolerance is a problem. It was not so bad on my first Tilt Table Test but seems to have gotten bad enough to qualify for POTS after 20+ years of illness. It is hard to separate my NMH/POTS symptoms since they are all part of the autonomic system problems. In any case, my autonomic dysfunction, however you want to label it, is definitely a disabling problem.

If I'm feeling sick from NMH/POTS symptoms then I can't work. But I've had the AV nodal reentrant tachycardia for 40+ years. I've never even treated it. It does not happen often enough to need treatment. I just sit down, or lie down, until it goes away. Or I try the Valsalva maneuver. Or splash cold water on my face (these sometimes work, but not always).

It's hard for me to tease out every single symptom and figure out whether midodrine helped that symptomm or not. I do think that, in general, midodrine has helped me. I don't know whether I can be very specific when it comes to POTS.

I know this is long, and maybe confusing, but hopefully it will help someone out there!

 

[Gingergrrl]

@ahimsa

My answer about tachycardia is complicated so I'll put it in another message -- this one is already getting too long!

I read both of your posts and thank you so much for all the info. I will respond to the tachycardia post separately.

Yes, shortness of breath is one of my symptoms. It was worse when my illness first started (I've been sick since 1990). But I still get that symptom, usually as part of my PEM symptoms after I do too much. It's more like feeling out of breath from running, like I can't catch my breath. There's no blockage, no asthma, nothing like that. It feels like I've just stopped running but my heart doesn't slow down to normal and my breath doesn't go back to normal.

My shortness of breath is exactly the same as you described, as if I have been running. There is no blockage or asthma, etc.

It's hard to tell whether midodrine actually helped reduce this symptom or whether I'm just better at pacing myself. When I push myself then that symptom comes back.

Just the fact that you think maybe Midodrine helped this symptom is hopeful to me! My new cardio is hoping that Midodrine will increase my BP and also improve my shortness of breath. You definitely take a much higher dose of Midodrine than I do but I tend to do better with low doses of everything.

I should also add that midodrine helped me, indirectly, with my sleep. As far as I can tell, after a lot of observation and talking with my doctors, things that trigger symptoms for patients with Orthostatic Intolerance can also interfere with sleeping. It seems that when the autonomic system is messed up then having it irritated a lot during the day messes up sleep, too. (Sorry that I don't have a more technical way of describing this! )

This completely makes sense to me and my initial tachycardia (in Jan 2013) was exclusively in my sleep and later switched to POTS type symptoms. It makes sense if the autonomic system is screwed up, that this is both while the person is awake AND asleep.

I did have an "at home" sleep test, as a screening tool to see whether a full test was needed. It showed no apnea and good blood oxygen levels. So that was at least useful to rule out those problems. If I recall the test did show some hypopnea because I think the overall result from the test suggested that I should have a full sleep study.

However, after the sleep specialist told me that she had never even heard of Orthostatic Intolerance (and she would not read the Johns Hopkins patient handout on NMH/POTS) then I didn't think it was worth doing a full sleep test with her. Long story short, I never had a full sleep test and would not even consider one unless the doctor at least had a basic understanding of how autonomic dysfunction might contribute to sleep problems.

I had a sleep study about 1.5 to 2 yrs ago to try to figure out why I was having the tachycardia in my sleep. I had absolutely no idea that I had ME/CFS yet and I was on a beta blocker (at the time metoprolol but now atenolol) and I took it the night of the study which I later regretted b/c the tachycardia did not occur. However, the study ruled out sleep apnea or lack of oxygen like you said.

 

[Gingergrrl]

@ahimsa

My tachycardia answer is a bit complicated.

Don't worry, so is mine LOL .

I have had one type of tachycardia that first started when I was 11 years old. It is not related to either NMH/POTS or ME/CFS (I don't think?). And my case has never been disabling, just annoying, and maybe a little bit tiring. It has never stopped me from anything. I got my degree, got a full time job in the high tech industry, got lots of exercise (hiking, weight lifting, and so on). I even climbed to the summit of Mt. Hood. Twice.

In this regard we are different and I never had tachycardia until after I had severe mono in 2012. I am amazed at how active you remained in spite of the tachy and that it did not stop you from living your life. Good for you!

For me this type of tachycardia is relatively infrequent and also a bit random. It might happen a couple times in one day or it might not happen for a few weeks in a row. It might last a few seconds or 45 minutes. Because of this it has never been caught on an ECG or holter monitor. But based on when I first got it, and how it starts and stops, and several discussions with doctors over the years, it's probably AV nodal reentrant tachycardia. It's like a short circuit in the heart.

I don't know if you feel it is worth it at this time for you to try this, but my tachycardia was ultimately captured by me wearing a "Zio Patch" device which is like a continuous holter monitor that can be worn for a few weeks at a time. We captured many incidents of it in my sleep and I wore the Zio two more times (in 2013-14) and captured the POTS episodes, too. My highest HR was 177 which shocked me.

It was identified as "Inappropriate sinus tachycardia" (IST) b/c my heart never left sinus rhythm but it was still very scary to me. This was before I saw a CFS or autonomic specialist and put all the pieces together. Well, actually I am still putting the pieces together and feel quite lost but I know a lot more than I did two yrs ago when I was completely in the dark.

Here's what it feels like. My heart is going along normally, say 70 beats per minute. Then on the very next beat it flips into going very fast, maybe 185-200 beats per minute. It usually makes me want to cough, like a reflex in my chest (not in the throat). Then after some time my heart flips back to a normal pace in a single beat, not gradually. This tachycardia never happens during exercise or exertion. It sometimes happens when I bend over slightly, say to pick up something. And a couple of times it has started while sleeping (it wakes me up, of course!).

Wow, your HR went even higher than mine did! How weird that it does not happen with exertion.

But this minor problem is in no way disabling. It has happened to me at work during a conversation. The other person never even knew. I just excused myself and went to the ladies room until it went way. It once happened while I was giving a talk. I kept on going for another 40 minutes until my talk was finished. As I get older it is more tiring but it's still no big deal. It's nothing compared to ME/CFS/NMH/POTS/whatever the hell combination of diagnoses that cause my primary symptoms.

I understand what you mean in the sense that I continued to work for almost a year after my tachycardia started. I felt it was an annoyance but I was on a beta blocker and I was okay. It wasn't until the full-blown ME/CFS symptoms started that I was no longer able to work. I now know they were all connected (in my case) and I should not have pushed myself so hard to keep working but I did not know at that time.

On the other hand, the tachycardia (POTS) from Orthostatic Intolerance is a problem. It was not so bad on my first Tilt Table Test but seems to have gotten bad enough to qualify for POTS after 20+ years of illness. It is hard to separate my NMH/POTS symptoms since they are all part of the autonomic system problems. In any case, my autonomic dysfunction, however you want to label it, is definitely a disabling problem.

Why did you end up having more than one TTT? I just had one in the hospital but the entire test was 15 min and I am not really sure what it captured. My cardio said the test was positive and "abnormal" but I did not faint and have never fainted in my life so am not sure what it captured and hope to find out. My lowest BP before the test started was 76/43 but my BP raises (not lowers) when I stand so I do not believe that I have NMH-- I just have low BP overall.

It's hard for me to tease out every single symptom and figure out whether midodrine helped that symptomm or not. I do think that, in general, midodrine has helped me. I don't know whether I can be very specific when it comes to POTS.

It's okay and with everything you have been through, it sounds like you are confident that the Midodrine has improved your overall functioning without horrible side effects. That is what I am hoping for myself as well.

I know this is long, and maybe confusing, but hopefully it will help someone out there!

It helped me so mission accomplished. Whenever I post a long manifesto or saga on here, I also always hope that it will help someone else down the line. I may send you a PM if I think of more questions and hope that is okay. Thank you again for devoting so much time to my questions.

 

[ahimsa]

I am amazed at how active you remained in spite of the tachy and that it did not stop you from living your life. Good for you!

I'm lucky that the doctor I saw when I was 11 did not make a big deal of it. I shudder to think that I might have gotten a doctor who made me afraid to go out and play or something like that.

As I said, my tachycardia is not that big of a deal. It sounds scary but really it is nothing. Unlike some patients I don't get any chest pain or dizziness. (which I DO get from NMH) I don't even get out of breath. I do feel tired after it happens. And if it happened more frequently then maybe I'd consider drugs or even ablation surgery. But it's just not bad enough to treat.

After age 40-41 (?) I did start having episodes that lasted longer (20 minutes, 30 minutes, etc.). So my cardiologist gave me a beta blocker (free sample) just in case it does not go away on its own.

Although, to be honest, if I were all alone in the house I'd feel safer trusting my heart to flip back to its normal rhythm on its own vs. taking a new drug that I've never tried! It's the devil you know vs. the devil you don't.

Why did you end up having more than one TTT?

My first TTT was in 1995 for my initial diagnosis. This was prompted by some CFS research done by Johns Hopkins. I heard about it through a friend of mine who was in the 1995 research study done by Dr. Rowe, et al.

In 2000, I filed for long term disability insurance. This was after 10 years of going on medical leave to rest and then returning to work (repeated many times). I finally got too sick to work at all, even part time.

Social Security approved my claim with no problem on the very first try. But my ERISA long term disability insurance claim (disability coverage provided as part of my work benefits) was a long, expensive legal fight.

In 2003 the insurance company ordered a TTT. My doctor was quite annoyed at the insurance company. She told me that this TTT was not medically necessary. There was no reason to think my condition had changed. But my lawyer advised me that the test would probably help my claim. So I took the TTT, got the same results as 1995, and won my claim.

Don't get me started on ERISA laws and how evil the big insurance companies can be. But you've been through your own insurance problems lately, right? So you probably completely understand where I'm coming from.

 

[Gingergrrl]

@ahimsa

After age 40-41 (?) I did start having episodes that lasted longer (20 minutes, 30 minutes, etc.). So my cardiologist gave me a beta blocker (free sample) just in case it does not go away on its own.

Although, to be honest, if I were all alone in the house I'd feel safer trusting my heart to flip back to its normal rhythm on its own vs. taking a new drug that I've never tried! It's the devil you know vs. the devil you don't.

Wow, I can't imagine my HR staying that high for 20-30 min! If I lie down, my HR goes back to normal within a few minutes. You are much braver than I am! When I need the Atenolol, it is like a miracle drug so I would keep your beta blocker on hand in case you really need it (especially if you fly or are somewhere far from home.)

Don't get me started on ERISA laws and how evil the big insurance companies can be. But you've been through your own insurance problems lately, right? So you probably completely understand where I'm coming from.

I'm not sure what ERISA is but am sure I will find out. Right now I am on a private disability plan through my employer and my medical insurance cuts off today. Tomorrow we start our Obamacare plan. In addition to the private disability plan, I have to apply for this secondary plan through my employer and then in Jan apply for SSD. So I will be getting paid by three different sources combined if it all goes through. It is endless amounts of paperwork and not looking forward to January.

I wanted to ask you one more question b/c I feel the Midodrine is helping me and today I was able to drive to the pharmacy myself and also go out to dinner with my hubby & step-daughter. My question is though, that you said you could feel the Midodrine dose wearing off and during that time period you felt worse until you took the next dose. I am not having that experience so far and wonder why?

All I can think of is that I am so incredibly sensitive to meds, that even the low dose lasts for a long time for me. It also is not raising my BP too much. In hospital it was often 80's/50's and now it is 90's/60's with the highest number yet being 106. Is that about how it was for you?