POTS/ dysautonomia medications

[Laurenmarcy]

I have POTS/dysautonomia. Had CFS for years but was doing well for a decade. Got POTS suddenly and am in bed a lot, and housebound. Blood pressure is now normal and heart rate with doing little is not excessive but does rise well over 30 point when I stand. I am nauseas a lot, can' sleep and very weak. One doc wants me to try florinef but I am concerned if my BP is normal. Another says Beta blocker..short acting metropanolol but I worry since resting heart rate is low and below 60 at night. I am trying low dose SSrI and want to give that some time but it has been three weeks and no great changes. Also taking klonopin which I don't really like. Big issue is florinef vs Beta. Also, it is five months of this....had CfS  for years but would have some variation in how I felt. I feel awful each and every day. Any ideas on how long this acute phase will go on??

[Laurenmarcy]

Thanks for the reply. I was unsure if beta's just affected the heart rate. It sounds like they could make someone feel somewhat better overall. I don't have expectations of life returning to the way it was. But being bedridden/housebound for months is not the way to go. I need to try something and have been on the fence about florinef, betas or something else. The SSRI did a little but I might need to raise dose...mine is very low.
Some folks have said that magnsesium, b12, Cq10 and D ribose are all helpful in this too. Not sure how they would affect dysautonomia.
Any information on how to recover...step by step would help. Is that the way it goes?
Lauren

[ablanken]

If hypovolemia is the problem, what would you look for in the labs? What would be the possible causes of this?

[Heiferly]

I want to look into what you heard about Florinef in younger patients further before commenting on it; I haven't come across that in my research nor in my experience, but I don't want to discount it until I have time to at least dig a little through the research.  So I'll get back to you on the veracity of that.

Migraines are not uncommon in dysautonomia.  I have them myself.  We treat mine with a combination of preventative medication and abortative medication for those that "slip through the cracks" of the preventative.  (I take topamax for prevention ... though some of my meds rxed for other purposes—gabapentin as one example—also may act as migraine preventatives to some extent.  I take triptan medications—Maxalt MLT and/or sumitriptan injections—for abortatives.)  A neurologist is generally the specialist who deals with migraines specifically, if that isn't something you've targeted in your condition management.

When a beta blocker is working well, you should get broader symptomatic relief than just heart rate reduction.  However, with *any* medication for dysautonomia, it is most likely unrealistic to expect medication to return you back to the way you remember feeling before symptom onset.  That is to say, no medication is known to have a curative effect on dysautonomia; there is no magic bullet here.  Each of these medications can at best offer a noticeable and appreciable incremental improvement in symptoms.  It is really up to the patient and the physician to decide how much of an improvement is worth it in terms of staying on a given medication (especially if there are side effects to weigh against the improvement).  That is not to say that you cannot or will not return to a meaningful level of functionality and quality of life again—to the contrary.  By systematically adjusting medications and trying different medications and addressing the different symptoms, there is definitely hope of achieving the quality of life you aim for.  I think the key is in realizing that treatment is symptomatic.  

I very much feel for your struggle, even if I haven't been through exactly the same thing.  I hope you're able to do the things you want and need to do for your family soon.

Heiferly.

[Laurenmarcy]

Thank you for your reply. I do not seem to have pooling. I have tried a few saline drips and they helped the first two times and then not much after that. I am weak and nauseas so much of the time,,,losing weight etc. This came on so suddenly and I need some relief.
The klonopin is for sleep and for CNS activation I guess. We will add a low dose of doxepin soon for more benefits.
I am only on 5 mg of Prozac and that has been for about 3 weeks so I guess I need to give it more time. I feel it may have helped a bit but not really sure.
I am in my 50's and read that Florinef works on younger patients-not older. Not sure if that is true. I do get migraies and have concern about that.
If a med like Betas or Florinef works, does it help with the whole syndrome? or do betas just help with heart rate?
Anyway, I know no one can tell me when I will feel better but just wonder if it gets better. This has been a rough 5 months and I have a child who needs her mom to get out of bed and drive.
THANKs for any help you can offer.

[Heiferly]

First, the easy to give but hard to take answer:  I can give you no idea of how long your current level of symptoms will persist.  This may give you more insight, but be forewarned it's on the long side:

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Some-General-Information-on-Prognosis/show/1627585


As to which medications are preferable in POTS, I think it's important to know a little more about your symptom profile (and hopefully your doctor is taking this into account as well).  I am *guessing* based upon the fact that in all of the medications that you are mentioning your doc considering you have not mentioned Midodrine (ProAmatine) that you do not have a predominant problem with blood pooling in your legs and abdominal bed?  If you're not sure, think about whether your feet/legs tend to get discolored (blue/purple/gray ... different people describe it differently) when you are upright, particularly for periods of time without moving your legs around; whether your feet/legs have a tendency to dramatically change temperature (relative to the rest of your body) when you are upright/standing for long periods of time without moving around; whether there is any swelling in your ankles or feet over the course of the day when you're upright; and whether compression garments (hosiery or abdominal binders) have helped your symptoms if you've tried those.  For some people, pooling just isn't a major issue, for others it may be THE major issue.  Certain drugs, especially Midodrine because it is a vasoconstrictor—something that causes constriction of the blood vessels, address this issue especially well.  

Fludrocortisone (Florinef) helps your body to retain sodium and fluids, thereby increasing blood volume/pressure.  I understand your concern that if your blood pressure is normal now, taking fludrocortisone could make it high.  That is not necessarily the case.  To understand why, you have to think about what is happening inside the body of a person with POTS to make their heart go fast when they are upright.  The tachycardia of a person with POTS is actually a compensatory mechanism.  It is not the root problem, it is a result of the root problem, one of the body's reactions to the root problem.  Above I discussed patients who have pooling blood; that is one scenario.  In that situation, when the patient is upright, some percentage of their total blood volume is displaced (pooled) out of their central circulation.  Let's use the example of 30%, so now we are left with only 70% of the total blood volume circulating to provide vital oxygen to the heart, lungs, and brain.  What does the heart do?  It speeds up!!  If that 70% of the blood volume moves FASTER, it can have a better chance of meeting the oxygen needs of those vital organs (particularly the brain where only a 20% drop in oxygen saturation is needed to cause loss of consciousness).  

Another thing that can happen is a person may have an acute or chronic hypovolemia (low blood volume); their blood isn't pooling, they just don't have sufficient blood volume to begin with.  Dehydration is one way this occurs, but there can be other reasons for hypovolemia.  In this situation, fludrocortisone can be particularly helpful because it can increase the blood volume.  When you improve the underlying cause, you expect to see the result (the high heart rate) to improve as well.  People can have a hypovolemia bad enough to cause POTS but still have a normal blood pressure.  

Some people have pooling and hypovolemia and take medication for both.  

As your doctor pointed out, beta blockers are another option.  They address the high heart rate.  They have a higher symptom resolution rate than midodrine in some recent research, particularly on younger patients.  There are many different beta blockers out there and some are "targeted" differently than others so some patients find that while one doesn't work for them, another does.  

What are you taking the klonopin for?  Sleep?  Central nervous system sensitization?  Something else?  If you don't like it and it's not helping what it's supposed to be helping, talk to your doctor.  I'm on it and it helps me immensely, but it's not for everyone.  You don't have to take anything you don't like.

SSRIs can indeed take weeks to show full effects, and sometimes you still need to play with dosages to get the proper outcomes.  And sometimes you find it just isn't the right med for you ...  While "fiddling with" these neurochemicals can indeed lead to marked improvement for autonomic patients, unfortunately this all still at least as much an art as a science, so a LOT of patience is required on our end.

Even if everything you try goes bust, there are other options out there.  There are many meds in the classes of drugs you've mentioned (beta blockers, SSRIs and related).  I mentioned midodrine.  There's also Mestinon.  There are others, depending on your symptoms and test results.

Finally, I'm sorry to hear that you feel awful every day.  Has your doc discussed anything to address your symptoms directly, especially the nausea?  That one can really take the zest out of life if it's severe, I know.  There are a number of different nausea meds out there.  Be aware that "promethazine" (which is in the same class of drugs as benadryl, so this applies to that as well) is a nausea medication that can be contraindicated in some folks with autonomic dysfunction, so approach with caution if you're Rxed that.  While some with dysautonomia can take those meds with no issues whatsoever, they can put others into a tailspin of autonomic symptoms.  If you've taken benadryl (or for that matter, promethazine or some other 1st generation H1 antihistamine) since the dysautonomia started and had no problems, you're probably in the clear (but may want to double-check with your doc); otherwise, be cautious about those and always ask the doctor if it's okay for you to take.  A good alternative for nausea medication is Zofran (generic: ondansetron) but it's expensive so may not be a great option if insurance won't cover it.  And just to be clear, 2nd generation H1 antihistamines (e.g., Zyrtec, Claritin) are not in that same "problematic" class as benadryl.


Let me know what other questions you have if any,
I'm sorry my answers aren't more specific but of course I'm not a doctor and cannot tell you what to do in your case in particular; I hope that the information that I am able to give you is helpful in informing the decisions you make with your physician.

Cheers,
Heiferly.