Anyone With Hyperpots?

[andybonse]

Hey,

Does anyone here with hyperpots take midodrine?

[SarahA33]

Hey there, Andy,

I was diagnosed with Hyper POTS 2011. I was given a high dose sodium diet, should have bought stock in pedialite and Gatorade, and changed around my med list completely. My daily doses are as follows:

TID: Midodrine 10mg, Florinef .005mg (unsure of exact dosage but it's 0.1mg cut in 1/2), Clonidine .2mg. Inderal (propanol) 640mg, Ativan 6mg.

PRN: pain med for migraine

Take Care, sarah

[SarahA33]

forgot to add Zantac and Zyrtek (H1 + H2) Blockers

[Lethargic Smiles]

I have hyperadrenergic POTS (norepinephrine increases way above normal going from laying to standing) but not the high blood pressure. Different centers/doctors have different definitions. I take 10mg of Midodrine 2X a day.

[KareBear]

I also have it and was put on Midodrine 2 seperate times and both times I took the Midodrine as directed for 4 weeks and both times had to be taken off of it. I had an increase in POTS symptoms while on it and my BP would drop extremely low, I would be weak and unable to wake at all (sleeping non-stop except to drink fluids or eat/drink quickly), and syncope episodes daily. Complete opposites of what I should have felt on the med so I was taken off permanently.

I see also that several of u are on propranolol like I am. Though all of our dosages are completely different. Mine is 40mg 3xday. It's the only med that has controlled my tachycardia for the most part. I tried tons and tons of others that didn't help at all. Does it work well for u too?

[SarahA33]

midodrine works really well for me. So did florinef.. I'm on such a small dosage now because my doctor think its time that I go off of it. Propanolol is also the only medication that works well for me. I think its b/c its a pure beta. Alpha beta's (labetalol) made me much much worse, and diuretics and calcium channel blockers did absolutely nothing for me.

[cberau]

I've got hyper pots with standing norepinephrine of over 1700pg/mL. I was on midodrine prior to that, with no good effects, just gave me more palpitations and the itchy scalp, goosebumps side effects. Both Dr. Goodman and Dr. Barboi said in my case midodrine was contraindicated for me, I was only on it because my PCP was trying to help with her limited knowledge. I find I'm doing better on 10mg nadolol (bisoprolol and propanolol did nothing for me, propranolol with midodrine gave me horrid palpitations with bradycardia supine). I'm also on 90mg mestinon (really helps with brain fog, muscle weakness, GP), double dose H1+H2 blockers,1500mg quercitin (natural mast cell stabilizer, but I'll probably end up on gastrocrom), and 40mg prilosec. I'm also taking 5,000IU vitamin D per day, can't really tell if that's helping. I was on 20mg midodrine at the highest and 5 mg midodrine at the lowest...all doses gave the same results.

Edit: Forgot some meds, I'm also on 2mg xanax at bedtime, along with 0.2 clonidine at bedtime. First sleep cocktail that works for me without giving me a nasty hangover! lol

[SarahA33]

cbakl,

My doctors were hesitant but in the end thought the benefits outweighed the risks w/ midodrine. I don't want others to not try it because it's contraindicated, not all patients w/ hyper pots are the same. that's how it is w/ a lot of meds. Sometimes, all that's left it to think outside of the box and I'm way better off because of it. Midodrine has helped me tremendously but I wasn't put on it because of lack of local doctor's knowledge.It was a choice, just like any medication, especially those of us with POTS react strangely or differently to. Glad you are having successful results with Mayo Clinic.

[cberau]

Oh no I think you misunderstood me. I said the doctors said it was contraindicated in MY case specifically. There are definitely still hyper pots people it helps. My BP fluctuates too fast to be dangerous apparently so they don't really try to manage it. I was told to look at it as more of a "sports exertion" kind of high blood pressure than a hypertension problem. It's 230/130 one second and 80/45 the next. I have no heart problems whatsoever nor do they think I'm at any risk of heart issues. I'm not trying to tell people not to try it, just sharing my experience. I think especially with hyper pots other peoples' experiences with things don't matter as much as the average person because we are pretty messed up in weird ways.

[SarahA33]

I must've taken it wrong so I apologize. I am glad that you are happy with care your receiving at Mayo.. it seems like they're trying a lot. its all about trial and error and it's hard to not get wrapped up in it all sometimes. How often are you scheduling to go back there? Im super happy with my care here but Mayo would be my only next option if needed, problem is traveling though. Its so hard to travel long distances.

Anyway... My BP fluctuates a ton. I cant even wear the 24 hr BP cuff because it cannot pick up a reading. It's pretty frustrating. Do you have that issue also?

[cberau]

I wouldn't say I'm exactly happy with my care at Mayo, I think being on better meds now is just luck, I mean they all would have been stumbled upon at some point anyway. Since I'm moving back to Illinois I'm continuing care with Dr. Barboi at Rush University. I couldn't possibly be more happy about the care at Rush, they are purely excellent. Yeah Dr. Goodman at mayo told me to just not take my blood pressure because it doesn't mean anything. He's like (you can obviously tell when you're having high pulse pressure without a BP cuff, so stand up and pulse pressure goes down, if you feel like you have low pulse pressure, lay down). I was told not to worry about my heart rate and blood pressure, because I don't have any heart problems at all, purely hyperadrenergic POTS and some other autonomic issues, so I have nothing to worry about and it's absolutely pointless to measure my blood pressure. He says measure how you feel, not the numbers, because everything else has been ruled out for me. Dr. Barboi essentially says the same thing.

Edited October 5, 2013 by corina

[SarahA33]

Okay so I'm guessing your going to stick with dr barboi at rush and not continue w/ mayo? Especially if you have faith in this dr at rush and he's local it can work out amazingly well. I've been to a lot of the major universities and clinics but it's been here in buffalo.
You mentioned previously sports exercurtion descriptions of your bp's.. Since ur already affiliated w mayo, there is a dr in MN who would be totally interested in your case. I've consulted via phone calls with him on an exercise plan that would work for lil ol hyper me... The generic exercise plans put there focus mainly on general pots and I'm just so different and put myself into a huge flair following the classic regimin and trying to maintain target hr's.

[cberau]

Yeah I might look into it at some point, depending where I end up if I get a job somewhere close to there or something. Dr. Barboi is excellent and well rounded, definitely has to be one of the top guys in autonomic neurology, he doesn't really advertise it though. Really humble. I like dealing with Rush, I was only going to mayo here in AZ, because it's only about 2 hours away. Dr. Barboi is like 40 minutes from where I'll be moving back to in Illinois.

[badhbt]

Cbakl,

I was wondering what was ever said or done about your high calcium and low cortisol?

I was also diagnosed with hyper POTS and I was also told "not to worry" because I have a completely normal heart....etc. I think that is easier said then done, especially when you know there is something else in the picture. I will continue to search for answers on a on and off basis, because it can be so draining and disappointing.

The reason why I ask you is that I am trying to get my Mom's medical records. I remember her doing tons of 24 hour urine collections. They were trying to figure out what was going on with her. They were trying to diagnose her with cushings at the time. I remember a Doctor telling me there is something going on with your Mom, but we can't put our finger on it. She also had a high calcium level and was later diagnosed with a parathyroid tumor. I know her prolactin level, cortisol level and WBC count was off. She also had a high heart rate, and it wouldn't surprise me if she had POTS also.

I hope you are doing better and will get some better answers

[cberau]

Yeah I keep getting censored so maybe my answer was wiped out somewhere. We haven't really looked into the calcium (didn't concern Dr. Goodman because it was only slightly elevated, although I'm a little concerned about the amount it increased from a year ago). We never check my PTH or anything like that. The doctor said the low cortisol was a little alarming, and to keep an eye on it. I haven't really worried about it, I'll get it checked once I'm back in Chicago. I've been busy getting ready to move. If I'm told my heart is totally fine by numerous doctors then I'll take that answer. Never did figure I had a heart problem, my kind of hyper pots is just more like unnecessary exercise. I just started gastrocrom, it's at least made my eyes a lot less blood shot than they normally are in a few days. I haven't really paid any attention to my pulse or bp since going to mayo last, I've lost confidence that any of it's really going to be able to be changed. I'm feeling slightly better, but I don't know if I feel better enough to justify the extra $50-60 a month in meds. It's always hard for me to say what's a symptom and what's a side effect. It's all kind of a blur. My mom has big thyroid problems, especially after getting hers destroyed with radioactive iodine. My thyroid hormone is rather unstable, I know that, goes to both ends of the spectrum. Never felt any different on meds for it. I'm at the point where I've pursued pretty much every answer I'll be able to get, and the fact is my situation probably isn't going to get meaningfully better, I've tried most of the meds out there, exercise is **** near impossible for me and I really do try.

[SarahA33]

cbakl,

Hang in there. I've also drawn the same conclusion regarding my diagnosis. Hyperpots just typically doesn't disappear, however that doesn't mean that it can't improve over time. I'm steadily making progress in the right direction but have my set backs and really difficult days. Today is one of them.. my entire family is at a birthday party and i'm stuck on my ipad drinking pedialite.

Good luck moving. That has to be one of the most stressful things to do. Other than the fact that I hate change, it's a hassle and so consuming.

Wishing you better days..

Sarah

[SarahA33]

Hi there, Andy,

How are you feeling? Did you end up trying the midodrine?

Sarah

[kitt]

I have hyperpots too. (NE over 1400)

Taking Methyldopa and Clonodine. Trying to lower the Methyldopa and lower the Clonodine.

I haven't tried Midodrine. Does it have any side affects for those taking it?

My biggest issue with hyperpots is lack of sleep and night sweats. Difficulty falling asleep and difficulty staying asleep.

Thanks to all who can share more about their experience with Midodrine.

Best,

K

[kitt]

Meant to say I'm trying to lower the Methyldopa and RAISE the clonodine.

Methyldopa has side affects I don't like. Am tolerating Clonodine at a very low dose.

Like some others, I have to start meds at an extremely low dose and work my way up. Am only on .5 of Clonodine, but 3. of Methyldopa, and have recently gotten it down to 1. I really don't like Methyldopa.

I also have low blood pressure. Seems there are several of us on Dinet who present with Hyperpots and low blood pressure. An unusual combination.

[badhbt]

Hi Kitt I also have Hyper POTS with low blood pressure. I was hoping that Midodrine would be the drug to help with my symptoms, but I gave it a few weeks and didn't notice anything. I also had increased the dosage but still didn't notice anything. I know it helps a lot of people, I just wasn't one of them.

cbakl- I hope you don't give up. One thing I have learned about the medical community ( I work in it ) is they don't know everything. One thing I do remember studying is that it is NOT normal to have an elevated calcium level. Even a high normal can be abnormal. Did you ever see a Endocrinologist? It sounds like you have some endo things going on especially with the low cortisol.

[kitt]

Hi Kitt I also have Hyper POTS with low blood pressure. I was hoping that Midodrine would be the drug to help with my symptoms, but I gave it a few weeks and didn't notice anything. I also had increased the dosage but still didn't notice anything. I know it helps a lot of people, I just wasn't one of them.

cbakl- I hope you don't give up. One thing I have learned about the medical community ( I work in it ) is they don't know everything. One thing I do remember studying is that it is NOT normal to have an elevated calcium level. Even a high normal can be abnormal. Did you ever see a Endocrinologist? It sounds like you have some endo things going on especially with the low cortisol.

badhbt, what meds are you taking for hyper that help you hyperpots?

Methyldopa is actually a med for high blood pressure, but it's used for hyper pots because it 'shuts up' the sympathetic nervous system.

Several issues though...One if you have low BP, like some of us do, Methyldopa makes it even lower and causes intense 'coat hanger pain' when BP goes too low (explanation of coat hanger pain here...http://www.nature.com/sc/journal/v40/n2/full/3101259a.html)

Methyldopa has a laundry list of side effects, and several side affects have caused me to start to wean off.

I've had very poor results with all beta blockers, and very poor results with Labetalol.

What's helping you with the hyperpots and low BP?

[SarahA33]

Kitt,

Lebetalol made me so much worse. I was on the max dosage for such a long time until my current doctor took me off of it on my first consult with him. It made my flushing and thermoregulation issues so intense (which I couldn't put together for some reason, just thought I was progressing before I had a diagnosis..) I got so much worse from it and couldn't understand the time why so much medication wasn't helping. Go figure....

I wish I could help regarding the hyper pots diagnosis and low numbers but I'm completely on the opposite end with incredibly high numbers. I take Propanalol (Inderal) which has helped along with the Ativan, Midodrine, & Clonodine.

[badhbt]

Kitt,

I wish I could rave about a drug that I have tried. I am currently weaning off of Effexor ( I was put on it and I can't really tell you if it was doing anything) I am also on Propanalol which I am also weaning off of. I really want to be off of everything and see where I am at. I read the side effects of those two medications and I wonder how much is meds and how much is POTS. I do take ativan PRN.

[Guest Alex]

Kitt, here is an article you may find interesting. It's about midodrine and it potential use in the treatment of CFS

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1742969/pdf/v080p00230.pdf

It was published in 2003 so it's not exactly new. Please disregard it if you have already seen it.

Alex

[kitt]

Interesting and unusual article Alex. It's from 2004 and I've never heard of Midodrin used for CFS in patients without a confirmed POTS dx. Surprised me. I didn't recognize any of the names from the bottom of the authors, with one exception and that's the name Fuduka, a controversial person in the CFS world.

But don't think that fact would be interesting to many on Dinet. I bookmarked the article though. It surprised me that much...That a doctor would prescribe Midodrin to a CFS patient without a dysautonomia dx.

WHY though does Midodrin help hyper pots. I understand it helps with vasoconstriction and can raise BP, but how does it reduce sympathetic activity?

Reducing sympathetic activity is the key to treating hyper pots, and currently Clonodine and Methyldopa are the frontrunners for treating this from of pots...With Vandy favoring Methyldopa and Mayo favoring other methods.

Methyldopa is a double edged sword IMO...I've been on it for many months, and it was helpful in the beginning, but if you Google the side effects you'll get an idea what I'm talking about. It would be a shorter list to show what are not side affects, rather than what are.

Does anyone have any info on Midodrin and reducing sympathetic excess?