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Miraclemaker11

Midodrine Questions

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Hello again my friends.  Thank you as always as we are doing our best to help our 22-year-old autistic son with POTS.  He has chronic low BP (although not as low as I’ve seen from others on this board) to go along with his POTS.  He is clearly “normal” when his BP gets close to normal or stays there but is otherwise chronically fatigued and erratically aggressive.  We tried Florinef again for a couple of days and this clearly made him worse (much more fatigued, headache, disturbed sleep, etc.), so that does not appear to be an option for him.  Of everything we’ve tried Midodrine works the best.  He is now on Midodrine 7,5 mg four times daily.  While this helps, the effect/benefit only seems to last about 2 hours.  I’ve read from one other poster here on DINET that he has had great response to Midodrine 60mg daily taken 2,5 mg every hour.  Has anyone else had a positive response like this to Midodrine?  It seems that lower dosage (2.5mg) given more often boosts the benefit and lowers the side effect risk.  Also, what are folks general observation as to why so many people with POTS and low blood pressure have normal functioning hearts?  It must be something like a neuromuscular defect that impairs circulation that cause the low blood pressure, right?  And, in turn, this might explain why many of these medications have a limited effect.  As always, I appreciate the thoughts, support, and feedback!

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I'm not sure if it was me you're referring to, but I do take 2.5mg midodrine hourly a lot of the time. I don't have amazing results with it but then nothing is really super helpful for me except for IV fluids, and to some extent, DDAVP. I am allowed to take 60mg midodrine but I don't - I've only done that a couple of times and the side effects were too much. My BP is still quite low despite a lot of medications, salt, fluids, compression, SCDs... 

 

It's great that he can manage 7.5mg midodrine - if it were me, I think I'd ask if it's okay to take that much every 2 hours if that's how long it lasts. I'm assuming he doesn't have high BP at any time. I was originally told to take 10mg every couple of hours - that did not go well side effect wise. However, I think the overlap must be okay.

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RecipeForDisaster - It was indeed you who had shared about taking the Midodrine at a lower dosage more frequently.  I’m glad that you get at least some relief from that.  How often do you need to take the IV Fluids?  To what extent and in what manner does the DDAVP help you?  Lastly, when you do get side effects from Midodrine, what are they?  My son does not seem to get any kind of high blood pressure from Midodrine, but it appears as though he gets headaches when the benefits of it wear off and his blood pressure starts dropping again.  

KiminOrlando - Thank you for that suggestion about trying Northera.  I did write it down on list but have yet to ask the doctors about it.  I’m assuming you take it.  If so, what exact benefit do you notice?

Thanks again to both of you.  All of this means a lot.  I hope that in some way I can help you too!

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I took it for more than a year. It is very expensive.  It lasts longer and there aren't the ups and downs like midodrine. For me, my bp regulator is broken, meaning I not only get low bp, but started getting high bp. This was a problem and meant I had to come off Northera.  I felt my best when I was on it. 

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12 hours ago, Miraclemaker11 said:

 Also, what are folks general observation as to why so many people with POTS and low blood pressure have normal functioning hearts?  It must be something like a neuromuscular defect that impairs circulation that cause the low blood pressure, right?

Hi @Miraclemaker11 . I have hyperadrenergic POTS with both high and low BP.  There are different mechanisms in POTS but I was explained that is mostly due to autonomic tone, which means how our bloodvessels constrict, and that is controlled by the ANS. Low Bp usually means dilated blood vessels. which can have several different causes. It can be from low volume, vessels that are too flexible ( as in EDS ), sympathetic withdrawal etc. In all of these cases the heart itself is normal, meaning that it is not a "weak" heart muscle causing the low BP. High BP is usually caused by vessles that constrict too much or too long, like in sympathetic overstimulation ( high adrenaline ), abnormal response to low volume or even ( in my case ) having red blood cells that are too big, causing false low volume which in turn causes sympathetic overcompensation. In these scenarios the heart is also perfectly normal in itself but CAN become affected by the abnormal BP's. As you see - dysautonomia is a complicated thing! 

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I get really bad chills, crawling scalp, and "cold" chest pressure from midodrine, worse with higher doses. I don't have any side effects at 2.5mg but it's a pain taking it that often, and I'd certainly benefit from larger doses, even every hour. I never have high BP - I didn't as a teenager before I got sick, oddly. My BP is less than half what is was then. Yesterday it was 72/40 after all of my meds maxed out.

 DDAVP seems to help about 1/4-1/3 as much as a bag of saline. The beneficial effects are the same, it's just milder, and I can get headaches and and malaise which I don't get from saline. Being a pill, though, it's great to have. I do get a boost in my BP, less dizziness and weakness, etc. although it can mess up your salt balance. I had a very hard time getting it prescribed, but I am so sick, I sort of need all the tools that exist.

I have clotting disorders, so although one doctor said it's time for a port and regularly scheduled IV fluids, it's risky for me. They are $30 a day copay and I am trying to save some of my veins (new IV every time), plus it takes about 10-18 hours to "properly" run the fluids because the slower they run in, for me, the longer they last. I still don't get more than 36 hours' benefit out of 2 liters of fluid, which is a major factor in my not doing them more often. I have to hang around the house hooked up for all that time, risking wrecking that vein, just to get a day and a half of relief. However, fluids fix EVERYTHING for me and I feel better than I ever do without them. I may try to get lactated ringers' soon so I can see if that lasts longer. I use them about twice a month lately because of all these factors. I can use them every other day if I want to - I mostly use them when I am desperate or need to be doing a little better.

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Hello again Friends.  Thanks for your patience with my delay in responding.  I’m just trying to keep up with everything here. 

KimInOrlando - I’m sorry that the Northera didn’t end up panning out for you, but very much appreciate the endorsement of it as another option for my son.  Thank you!

Pistol -  That’s one of the best explanations about POTS (and related disorders) and the issues with sympathetic tone and the under or over reaction of the autonomic nervous system.  I know you have both high and low BP, so that must wreak havoc on you.  With my son, we are only seeing the lower blood pressure but with erratic adrenal surges and aggression.  It’s interesting that the Midodrine (essentially a vasoconstricting stimulant) actually calms him.  And, I’m now worries that some of the sedating medications he takes (clonazepam, mestinon, etc.) might be making him worse by weakening/relaxing the muscles too much.  How exactly did you get your diagnosis of the low blood volume and oversized red blood cells?  For as much testing as my son has completed it still isn’t clear to me that his actual blood volume has been measured.  Interestingly, I’m having my own broadly similar symptoms - lightheadedness, having to lay down to elevate my feet, high blood pressure (my son’s is low), etc.  I lot of my cardiovascular tests have been normal but I’ll be getting a tilt table test (for the first time) in 2 weeks.  

RecipeForDisaster - How do you even survive and make in through your day with a BP of 72/40???  I suppose that the short answer is ... IV Fluids and DDAVP.  But, what a disruptive and invasive way to live.  What do the lactated ringers do?  Also, what diagnostic tests came back definitive for you with respect to any aspects of your medical issues?  My heart goes out to you (and everyone here).  

There has to be a missing component that links many of these disorders and makes for “the invisible illness.”  Is it autoimmune???

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Miraclemaker11--just a quick note to say that I also run through midodrine very quickly (I can feel it wear off after 3h) and I take 10mg every 3hours, for a total of 50mg/day (or 60mg, if crossing time zones). Midodrine is metabolized in the liver and apparently there's some variation among people in how fast we process it--I'm a fast processor, so it wears off quickly for me, so much so that my face changes color in the space of about ten minutes when it's "done." Some docs are hesitant to go with a dose as high as mine, but there is precedent, and it has helped me a great deal with the fatigue to dose this way, as my body never really runs out of midodrine until I'm ready to go to bed. (Without midodrine, I was hovering around 85/55 on an average day, sometimes lower. I start to feel poorly if the upper number is below 95, myself). With an even midodrine dose, I get many fewer adrenaline surges, which sounds like it's an issue for your son. My cardiologist says that the adrenaline surges are reflex responses to declines in BP, so the midodrine has a preventative effect. The major hassle with the nearer doses is simply remembering to take them--I have my alarms programmed into my watch, myself. I've also had good luck to have very limited side effects from the midodrine, myself, even at the high dose. 

 

 

 

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9 hours ago, Miraclemaker11 said:

With my son, we are only seeing the lower blood pressure but with erratic adrenal surges and aggression.

@Miraclemaker11 - I wonder if it could be that the low BP causes the body to dump out adrenaline in order to bring the low BP up and that causes the surges? That could mean that increasing the BP potentially could prevent the surges?

 

9 hours ago, Miraclemaker11 said:

How exactly did you get your diagnosis of the low blood volume and oversized red blood cells?  

I was born with oversized RBC's, it runs in my family ( so does hyperadrenergic POTS ), it shows up in every CBC. And there is a study out there that mentions this as a potential cause for POTS since the body believes that we do not have enough blood ( because the blood is "thicker")  and as a result it constricts the blood vessels, like in shock or sudden blood loss. This is due to high adrenaline output, also as in shock. 

 

9 hours ago, Miraclemaker11 said:

 What do the lactated ringers do?

I also get Lactated Ringers as my IV twice a week. Essentially it is higher in electrolytes than Normal Saline and increases the volume more, that is why they prefer it to be given during surgery over NSS. Personally I have seen a longer lasting effect from it than Saline, that essentially just runs through me. 

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I'm barely functional. I collapse, wobble, black out, or pass out often. This while I'm on tons of meds and interventions... 15gm salt, 3-4L water, compression stockings, tVNS, sequential compression devices, etc. I really haven't had a lot of definitively helpful or positive results, other than my renin being high, a positive ANA, loss of weight, bone spurs and arthritis on my neck and back MRIs, my HR being high, etc. I haven't gotten to try lactated ringers yet, and now the only MD who might help with that "no longer works there", yikes!

Doctors say it's not important or worthwhile to measure my blood volume. They're sure it's low, and they're already doing everything they can do increase or help with it.

I do think I may be autoimmune, but doctors have been dismissive despite consistently positive ANA.

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@RecipeForDisaster

Have you seen a Rheumatologist? Can you see one? Based on what you are saaying and what happened with me, treating the autoimmune disease may be the key. It helped me to treat my autoimmune. If your ANA is positive but nothing else is positive, they called that Undifferentiated Connective Tissue disease in me. They still treated it. 

I hope you are able to pursue this. 

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I saw a highly regarded hospital's rheumatologist who was the most dismissive, abrupt, unhelpful person ever. He started with "this is a dead end". I don't think any of my doctors will send me to another one - they barely wanted to send me to him, and then they were justified :( He didn't touch me and barely looked at paperwork or talked to me.

My pattern is homogenous and nothing else, other than immunofluorescence, comes up positive. I feel sick all the time, though... 

 

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@RecipeForDisaster - does your insurance require a referral? You can request a second opinion, every insurance is obligated to provide this. With a positive ANA, symptoms and having seen only the one rheumatologist you can either explain this to your PCP and demand a second opinion or - if he/she refuses - you can contact the case management department of your insurance and explain the your situation and that you need a second opinion. They can recommend someone or help you with the process.

 

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3 hours ago, RecipeForDisaster said:

My pattern is homogenous and nothing else, other than immunofluorescence, comes up positive. I feel sick all the time, though... 

Based on what you are saying, the things I have learned through the years and the article below, it looks like it may mean Undifferentiated Connective Tissue disease. How long ago did you see this Rheumatologist? Can you talk to his nurse and ask if he makes clinical diagnosis or strictly goes by the bloodwork? Some Rheumatologists won't make a clinical diagnosis and a significant percentage of people go untreated. I read a statistic that 20% of patients never test positive on bloodwork. It is called sero-negative. I was sero-negative for years, but my 3rd Rheumatologist made a clinical diagnosis and put me on meds. It changed my life for the better. I am now showing positive in my blood, but it comes and goes. 

My first two Rheumatologist only diagnosed from bloodwork. I can't imagine what my life would be like if I hadn't kept looking for help. Definitely consider revisiting this issue with your insurance company and your family doctor. 

https://www.epainassist.com/autoimmune/is-there-a-blood-test-for-connective-tissue-disease

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My insurance doesn't require a referral, but the specialists always do. I'm told "sometimes ANAs are just positive for no reason and it doesn't mean anything". Mine wasn't ever until a few years ago and it is consistently now... the lowest it's been is 1:80 but usually 1:160. I can't find anyone to see who has a decent reputation, anyway. I guess there are a lot of bad ones around.

 

i keep bringing it up to my doctors, saying I really think there's something worth checking out here, but I don't have anyone to see. I don't have a lot of joint pains, but I am tender in a lot of places. My other inflammatory markers are okay, though. ESR, CRP, etc.

 

I saw the bad guy in June. His clinic discharged me and they won't talk to me. They are extremely dismissive. The guy told me I don't have lupus or RA, which I knew, of course!

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