Wife Is In The Hospital With Pots - Questions!

[thericky]

It's good to hear that people take Toprol with Midodrine/Florinef. We're going to give the Ritalin a few more days just to see if it does anything. Next doctor's appointment is a week from tomorrow.

Broken Shell: While she was in the hospital, I believe they did endocrine and cardiac testing, though I don't know if she got a FULL endocrine work-up... enough to note that her cortisol levels were temporarily low (they were back to normal after a day's treatment).

Miriam Poorman-Knox: Michelle has had her thyroid checked a couple of times, most recently while she was in the hospital, and no problems have emerged there.

Mack's Mom: She's taking 0.2mg Florinef twice a day and it seems to be working well. She tried 0.4mg all at once in the morning and it gave her some odd side effects. She tried 0.2mg just once, skipping the nighttime dose, and it made her feel worse, so 0.2mg when she gets up and 0.2mg 12 hours later seems to be the right dosage for her.

We've never considered an allergic reaction, though I'm not sure what she'd be having a reaction to. As far as we know, she has no allergies.

[juliegee]

"We've never considered an allergic reaction, though I'm not sure what she'd be having a reaction to. As far as we know, she has no allergies."

Neither do I- none. Yet, I'm DXed with a condition called mast cell activation disorder (MCAD). It is one possible cause of POTS. I take oodles of antihistamines daily to keep my BP up and my HR down. If Michelle isn't having any of those other symptoms: occasional flushing, skin stuff, chest or throat tightness, trouble eating, "D", bone pain, cognitive fog, etc...I probably wouldn't consider it. I just thought I'd throw it out there as a possibility.

All the best-

Julie

[thericky]

If Michelle isn't having any of those other symptoms: occasional flushing, skin stuff, chest or throat tightness, trouble eating, "D", bone pain, cognitive fog, etc...I probably wouldn't consider it.

Actually, she does have flushing, chest tightness, occasional trouble eating, and recent cognitive fog. How would we go about seeing if she's allergic to something?

[juliegee]

"Actually, she does have flushing, chest tightness, occasional trouble eating, and recent cognitive fog. How would we go about seeing if she's allergic to something?"

Look at The Mastocytosis Society Website to learn more: wwwtmsforacure.org The site is under construction and is currently hard to navigate. When you get to the home page, in the blue rectangle on the left, click onto "here" in the 3rd paragraph. That will take you to the old website. Once there, look at the list of options in lavender on the left, click onto "mastocytosis and mast cell activation disorder" (the third option) to learn more.

A good test for Michelle to have is a serum tryptase test (simple blood test). It would be best to do within a few hours of chest tightness, flushing, etc. That may indicate if all of this is caused by anaphylaxis. Many try OTC meds like zyrtec (H-1) and zantac (H-2)- without testing- to see if symptoms improve. If so, that's very important information in obtaining an MCAD DX.

Describe her flushing. At my worst, I would get waves that started at the top of my head and decended in a straight horizontal line down my body. Other times, my face, neck, and chest just turned red.

I know how hard things are right now. I've also gone through awful periods. I pray you get to the bottom of things quickly. It's so frustrating when your doctors can't figure things out. you are doing the right thing to research various possibilities.

Julie

[thericky]

After being asked many times if Michelle has had a full ANS test, we have come to the conclusion that she has not. In fact, we weren't really sure what exactly that meant until I just looked it up.

I found a place in Stuart, FL that does it but that's 2 - 2.5 hours away. Where can I find a list of places that do full ANS testing? I hope to find one closer to Orlando.

[Sunfish]

rick (& michelle) - while i'm certainly not telling you to not pursue additional testing, before you think that a 4-5 hours trip is an absolute must i do want to clarify that most of those with most dysautonomia diagnoses - including many (or most?) forum member - don't EVER have a "full ANS work-up" per se. in many (perhaps most?) cases it's simply not considered necessary or even helpful; to varying degrees this is the general opinion of many (if not most) of the docs who specialize in &/or routinely/ primarily treat those with autonomic dysfunction. while there can certainly be some testing - autonomic &/or otherwise - that can help to ensure proper & thorough diagnosis as well as the best possible treatment in cases such as michelle's, it is equally important to realize that some of the testing included in a "full" ANS work-up simply has little to no affect on treatment decisions and is rarely (if ever) used outside of a research setting.

so what does or should this mean? it means that before you start packing &/or calling around with pleas to get any & every available ANS-related test scheduled asap it would probably serve you best to talk your questions & concerns related to testing with the dysautonomia-competent doctor you've seen & are working with. there may be one or two additional ANS tests that s/he feels could help round out michelle's diagnostic picture, it may be that s/he feels that a different arm of testing or consult (i.e. seeing an endocrinologist or allergist) might actually make more sense as a "next step", OR s/he might just as likely feel that it would be best to press pause on any additional testing for now in order to focus on adjusting meds/ treatments for a period of time. b/c while i'm sure it seems like you've already been trying things for a long time & haven't been getting as far as you need to or would like, in reality it very often takes a good deal longer for people to find what works best; it's no exaggeration to say that it's not unusual for people to spend many months or even years of trial & error & adjustments before finding the best "med cocktail" & other treatments/ lifestyle changes that allow for the best possible management of symptoms. i'm sure that's not what you want to hear (that it can take months or years) but it's the truth & many here on the forum can attest to it.

but moving on to the specific questions you raised...

re: the possibility of "substituting" ritalin for midodrine i agree with much of what others have said re: it likely doing more harm than good for michelle. since both are short-acting meds & there's no way to ever know for certain what will be the "magic pill" (or as close as one can find) for a given individual i certainly wouldn't dismiss giving it a shot (as you're currently doing i think? so that i'm assuming your doc suggested it &/or is at least on board with the trial...)

to help you understand the two meds and their relationship a bit better i'll try for a quick explanation/ history lesson: as you may know, ritalin has been around far longer than midodrine. years back (perhaps 20 or 25? not sure on the dates but at a minimum it's over 15yrs back) some doc/ researcher/ clinician realized that ritalin - and specifically the fact that one of its common side effects is an increase in blood pressure - could be helpful in the treatment of those with orthostatic hypotension and quantified this off-label use in clinical research studies. while the studies did confirm the possibility of a benefit, for some the benefit brought with it unwanted symptoms as well that were related to the stimulant properties of ritalin, often more prevalent in those without ADD/ ADHD. it was this pro-con element of the drug that in fact led to the eventual development & use of midodrine. the sometimes unwanted effects of the ritalin were connected to the elements/ properties of the drug that had crossed the blood-brain barrier. the beneficial property of the ritalin (for those with orthostatic hypotension) was, on the other hand, the peripheral vasoconstriction that many times caused an increase in blood pressure and which was an effect of the component of the drug that did/ does NOT cross the blood-brain barrier. so....high minded scientific pharmacology researcher developer folks went to work to try to create the helpful "half" of ritalin - the part that increased blood pressure and which didn't cross the blood brain barrier - independent of the other "half" (the part that crossed the blood-brain barrier & caused unwanted effects in some with OH but not ADHD). the result?? MIDODRINE!!! the first drug actually designed "just" for a component of dysautonomia! (as opposed to the gazillion others we take off-label, for their "side effects", etc.).

so....getting back to michelle, b/c - as others have mentioned - ritalin's stimulant activity has a high likelihood of increasing tachycardia (amongst other things), there is a high chance that it will hurt just as much - or more - than it will help. technically - and in high enough doses - it "should" theoretically be able to do what midodrine does in terms of vasoconstriction/ increasing blood pressure; in practice, however, things don't often work so clearly, and the additional side-effects that will likely accompany the quantity she would need to replicate the same effect on her blood pressure have a high likelihood of causing trouble.

as others have mentioned there are certainly some of us who do successfully take ritalin or other drugs in its' class (concerta, daytrana, etc.)...either independent of or in addition to midodrine. personally i take high doses of midodrine around the clock and also take a low dose of daytrana or ritalin during waking hours (currently shifting from daytrana, aka ritalin in a patch, to "oral" ritalin - aka via my j tube - due to insurance/ cost changes); at one point in past years i was able to take concerta (essentially a long-acting form of ritalin) INSTEAD of, or to replace, my midodrine - a rare respite from almost constant midodrine usage in my past 11+ yrs since diagnosis - though i did still take one dose of midodrine upon waking at the time as that "kicked in" faster (approx. 30 min) than the concerta (90-120 min.) as well as for occasional/ as needed extra "boosts" on longer-than-normal days, when acutely ill, etc. so in theory what you're asking about "can" be done. we're all different, though, and for me we have always wanted/ needed the stimulant component of ritalin (& the similar other meds) so that i have taken (and currently take) them for the very reason that many cannot tolerate them. i don't have the excessive consistant tachycardia that michelle and some others deal with but rather have autonomic failure with a heart rate that goes anywhere & everywhere (but in recent years never consistently high for long periods); for me hypotension and disabling fatigue - cognitively & physically - are much more prevalent & life-hindering to the extent that i in fact need the stimulant component of the ritalin or ritalin-type meds to function at even the greatly reduced level that i do. sorry for throwing what is likely way more of my own history/ info your way than needed; just an example of how what you're trying can & does make sense for some (aka me) but might not for others with different s constellation of symptoms.

re: the possibility of using a beta blocker in conjunction with florinef &/or midodrine &/or ritalin &/or any other meds intended to raise blood pressure, it is definitely a technique/ combo that some find quite effective. some of the top autonomic specialists (i.e. grubb, vanderbilt, etc.) are vocal advocates of the fact that many patients do better on smaller doses of more than one med than they do on a larger dose of any one med. over the years i've had conversations about this reality with dr. grubb, doctors at vandy, & other ANS specialists (in ohio & maryland) and i believe it is even discussed in some of the clinicial papers related to treatments of one or more of the specific dysautonomias. the beta blocker with midodrine &/or florinef &/or mestinon is definitely a combo included by some docs in the possible "several meds at smaller doses" options for some patients. my best "med combo" at one time - as "officially" found/ documented during my two weeks as a research patient in medication trials at vanderbilt several years back was in fact mestinon, midodrine, & a tiny dose of a beta blocker. while it does seem a bit counterintuitive to take meds that seem to have opposite intents, in some a combination is effective b/c each has a different mechanism of action that doesn't so much cancel the other out but instead works in conjunction with the other to gain the wanted benefit of each without (hopefully) the unwanted elements. hopefully this makes at least a tiny bit of sense?

last but not least i want to throw in my two cents re: the very real possibility of focusing too much on "the numbers" (blood pressure, heart rate, etc.). it is something that can definitely happen & is perhaps most common when folks are fairly new to diagnosis &/or active treatment. in the process of trying to move full speed ahead through different treatment options & possibilities and wanting to quantify - understandably - what works & what doesn't, many people go about trying to achieve the "best" BP & HR readings as much and for as long as possible with the utmost goal being to get a grasp on an illness that often defies attempts at simple explanation &/or definition. over time, however, people find that "the numbers" are only part of the picture; b/c while BP & HR - or more aptly keeping one's BP & HR within acceptible norms as much as possible - is certainly an important element of treatment, it is in reality only part of the picture. one of the biggest frustrations for many - newly diagnosed or not - is the fact that an improvement in BP &/or HR readings does not always bring with it a relative improvement in symptoms or functioning. the reason behind this is multi-faceted, varies from person to person & symptom to symptom, and is not always well understood, but in the end means that a singular focus on "the numbers" is a one that will often end in frustration & disappointment.

there's no "magic answer" to this as there is definitely still reason to pay attention to what various treatments (lifestyle changes, meds, etc.) have on "the numbers" so to speak. but in the end what's most important is not only an improvement in one's BP & HR readings but a rather a more holistic maintenance/ improvement of symptoms. in other words how does one feel? a lot more could definitely be said in relation to how "the numbers" may or may not react to how one feels but for now i'll leave it at that. but never dismiss a med (or other treatment) that seems to offer a degree of consistent improvement - however small - regardless of what "the numbers" say; obviously a "good day" here or there may be coincidence, but there are various reasons that a treatment might help without offering any corresponding improvement in "the numbers" such that - at the very least - the report of any improvement in symptoms may be key in the ongoing adjustment/ changes of one's treatment regimen.

hope this helps,

melissa

[thericky]

Melissa - Thanks for that long response. You make some excellent points. We'll hold off on ANS testing for now while we try everything else. No point in diluting what we're trying to accomplish. Also, I had no idea that Midodrine was a spin-off of Ritalin. Very interesting.

I believe our next course of action will be to replace Ritalin with a beta blocker, probably something other than Toprol XL. I've read a number of posts on here from people who have had great success with a couple of other beta blockers after having limited success with Toprol, so we'll hopefully learn from their attempts. Michelle increased to 10mg of Ritalin daily and has felt much worse, so we're going to stop that ASAP. It does appear to be raising her heart rate.

Here are a few more questions that have come up while we've been discussing what to do:

1. A lot of talk lately (mostly fueled by Dr. Rieders) has been on Michelle's blood pressure. However, her main complaint is her tachycardia. The doc insists that by treating the low blood pressure (which isn't terribly low to begin with), we could help her tachycardia. However, although taking Midodrine has brought her blood pressure to normal levels (almost always between 110/70 and 130/90), it hasn't really helped her high heart rate at all.

Beta blockers seem to be the immediate answer to fixing her tachycardia. But other than that option, are there other things we could try to help her heart rate?

2. Michelle has never tried an SSRI or SNRI and we're considering it. Cymbalta seems to be the drug of choice for many on here. What exactly does Cymbalta (or other SSRI/SNRI's) do to help a POTS patient with tachycardia?

3. Another random symptom Michelle has been having nightly is one of her ears suddenly turning red and hot for an hour or two. Sometimes it's the left, other times it's the right. Could this be anything POTS related?

4. Finally, Michelle often experiences a strong pounding sensation from her heart pumping, which is independent from tachycardia. What is this? Blood pressure too high or something else? Whenever we check her BP, it seems fairly normal, though it does drop when she's standing.

Thanks! Next doctor's appointment is Friday, so we want to go in prepared to tell him what we'd like to try next.

[Broken_Shell]

Hi Ricky,

I am glad that you and Michelle continue to try different things and ask questions. Even though it is frustrating and disappointing, all of us with dysautonomia need to believe that if we keep trying then somehow we just might find the right combination of treatment that will allow us a somewhat functional life. What that combination is for me, I have no idea but I know that we all need to keep searching and supporting one another. Please share those thoughts with Michelle. Now, on to your questions. Here are some thoughts that I have...

1. Regarding the heart rate and blood pressure issue. Yes, low blood pressure can increase heart rate. In a person with a fucntioning autonomic system, raising the blood pressure will lower the heart rate. However, Michelle does NOT have a fucntioning autonomic system. I think that the doctor's initial approach of using the midodrine to try and lower the heart rate is a good first step, but if her BP is increased and in a normal range and the tachycardia is unchanged, then the tachycardia is likely the result of the autonomic dysfunction and not a low BP. I would agree with your decision to try and go back on a beta-blocker if Michelle can tolerate it. You are correct, there are many out there to try and everyone's body reacts a little differently to different medications, even if they are the same type of medication. I hope that the doctor is willing to work with you on that. If he is not, then I hope that you can find another doctor who will.

2. The question about the SSRI's/SNRI's. It is unclear how these medications can prove helpful for people with dysautonomia. I have read some information stating that in certain patients, these types of medications appear to "reset" the autonomic nervous system. It is certainely worth a try, although I don't know whether or not Cymbalta has been looked at or used by many people on the forum.... perhaps you were thinking of Celexa? The thing to remember with these medications is that they can take 6-8 weeks for their positive benefits, and they can cause a lot of side effects and be difficult to tolerate during the initial month of use. If you do a search for "anti-depressants" on the forum, you will find a lot of posts and people's experiences.

3. I also have the ear flushing. I get it in only one ear - always my right ear. I believe that it is just an autonomic "oddity" that signals stress on my body. I often have the ear flushing accompanied by an increase in symptoms or as a precursor to an increase in symptoms. Flushing can also indicate an allergy, so this is something that you may want to consider too... it may be useful to write down when it occurs and look for a connection with a certain activity, food, medication, time of day, etc.

4. I'm not sure about the heart pounding. I experience sensations with my heart where it just feels like it's working too hard or "struggling" and just not right, but it's not specificallyt racing or skipping beats. She might just be feeling the force with which her heart is beating. The beta-blockers could help with this, as they decrease strength of heart contraction in addition to heart rate.

I wish you both the best. Please keep us all up-to-date on how things are going. Also, I might suggest starting a new forum topic next time you post because this thread is getting really long and takes a lot of scrolling to find the end of.

Let Michelle know that both of you are in my thoughts!

~ Broken_Shell

[Mary P]

Hi to you both, Michelle and Ricky,

I've been taking Midodrine since early August, 2008. I began with 2.5 mg 2x/day and very gradually worked up to 10 mg 3x/day, 8:30 a.m., 12:30 a.m, and 4:30p.m. I chose my own best times to take it. I go to bed at 11:00 so it's well out of my system by then.

Still, I absolutely have to lie down a few times a day and the M has never caused any problems as regards BP and HR, even should I lie on my back for a while. Once I began to take 10 mg 3x/day I began to get chills and an itchy scalp after the second dosage.

I wish you both all the best in dealing with this chronic condition. Just don't give up. It sounds like you, Ricky, have a great attitude about heow you're dealing with this. Even when you, Michelle, are going through a rough patch, there'll always be that ray of sunshine, a few or even several hours of feeling uplifted somewhere down the line.

I hope you have lots of support from doctors, other family and friends.

Mary P

[thericky]

Thanks for the reassurance that adding a beta blocker to the mix is a good idea. I don't think the doc will put up too much of a fight. Your explanation about a normal autonomic system versus Michelle's system definitely made sense.

It seems that every time I start looking up information about POTS, I stumble onto entirely new things that I had never read before, leading to even more questions. So here we go again:

1. I didn't realize there were two main types of POTS: neuropathic and hyperadrenergic. It seems like something we should have figured out a long time ago but never did. It's clear that Michelle's doctor is treating her for the neuropathic variation.

However, she exhibits some of the symptoms of both types, so it could go either way. She does not have any nausea or vomiting and only recently started flushing, though it's quite common now. Her main complaint is tachycardia accompanied by a pounding sensation from her shoulders upward.

Is it possible that we're barking up the wrong tree and should be trying to treat the hyperadrenergic variant of POTS instead of the neuropathic version? Or does it sound like we're at least looking at the right type of POTS?

2. I hadn't read anything about mast cell activation until tonight but found some research (http://hyper.ahajournals.org/cgi/content/full/45/3/385) that linked it with POTS in several patients. I know some on this forum have MCA.

What I don't quite understand is how we could possibly tell if Michelle also has MCA. Is a visit to a specialist required for that?

3. In reading a recent paper by Dr. Grubb (http://circ.ahajournals.org/cgi/content/full/117/21/2814), I see he does not agree that beta blockers are good for POTS patients, despite the common use by people on this forum. He even lists beta blockers under the "Drugs That Can Cause or Worsen Orthostatic Intolerance" category. He does mention that for the hyperadrenergic of POTS, he will sometimes use an alpha/beta blocker like labetalol.

So why do beta blockers seem to help so many with POTS and yet Dr. Grubb does not recommend using them?

Going by the Dr. Grubb playbook, it looks like an SNRI is the next step for Michelle. As much as hopping back on the beta blocker sounds great, I think it's better that we try something new in case it works even better. Cymbalta is recommended by Dr. Grubb (and I have seen several post on here that they take it), so perhaps that's the one to try.

As for starting a new thread... should I? Most forums I frequent would rather see an ongoing topic contained within one thread to keep it organized.