As of 2011, there is no one-size-fits-all treatment or "cure" for POTS. Chances are you will have to try many different things to feel better before you figure out what works best for you. And even when you figure out what works best for you, you probably won't feel 100% normal or back to your old pre-POTS self for a long time, if ever. But that doesn't mean you shouldn't try to feel as comfortable and normal as possible.
There are a number of lifestyle modifications you should try before you start drugging yourself up with medications, such as drinking 2-3 liters of electrolyte filled fluid per day and increasing your salt intake up to 3-10g (3,000-10,000mg) per day. If you have high blood pressure, you definitely should talk to your doctor before increase your salt & fluid intake. See my "Coping With POTS" post for more info on the lifestyle changes you can make that may help you feel a little bit better before you start trying out different medications. Many POTS patients also have vitamin deficiencies, including yours truly, and once we identified my vitamin deficiciens and started vitamin therapy, I felt some noticeable improvement in my health. See my "Check Your Vitamin Levels!" post for more info on that.
There are many drugs that researchers and creative doctors have used to try to help POTS patients feel better. Before you start trying these drugs, it would be a really good idea to try to get as much information as possible on what "type" of POTS you have - so you can start with the drugs that are more likely to help your "type" or subclass of POTS. For more information about the different subclasses of POTS, I suggest reading these medical journal articles (the first two mentioned) and sharing them with your doctor.
If you're doctor isn't qualified or willing to help you get the tests you need to determine what type of POTS you have, I highly suggest you get yourself a consultation at a major research based medical center that has experience with POTS, such as Vanderbilt, Mayo Clinic, Cleveland Clinic, etc. See my blog post for more info on how to find a doctor with expertise in POTS.
Once you have tried the lifestyle modifications and tried your best to figure out what type of POTS you have, here are some of the drugs your doctor may end up prescribing you. This list is by no means complete and by including the drugs on this list, I am not suggesting they are approved for POTS (to my knowledge, no drug is approved by the FDA to treat POTS) or that they are the right drugs for you. Your doctor needs to determine that.
Flourinef (generic name: fludrocortisone)
This is one of the most common medications given to POTS patients. Flourinef helps your kidneys retain more salt, which in turn helps your kidneys conserve water, which in turn increases your blood volume, which increases your blood pressure and in theory lessens your dizziness, vertigo, lightheadedness and fainting. This works especially well in the "hypovolemic" (low blood volume) type of POTS and in patients with low aldosterone levels. Flourinef is a synthetic/man-made form of aldosterone.
Your may doctor have to tinker with the dosing for a while before you find the ideal dose. It's important to track your blood pressure several time a day when you first start Flourinef, and you may want to purchase a "hat" for your toilet which allows you to track the volume of urine you are excreting. This information will be helpful for your doctor to know whether you are getting the ideal dose. The hat will also make it easier for your to collect urine samples, which your doctor should do at least once a month once you are on Flourinef, to make sure your sodium, potassium and other electrolyte levels are normal. Your doctor can check electrolyte levels through blood tests, but since many POTSies already have low blood volume, you can try to avoid blood tests as much as possible. Regular monitoring of your electrolyte levels while on Flourinef is important, because it can lower your potassium levels, which can be dangerous if it gets too low.
Most POTSies take between .1 mg and .3 mg of Flourinef per day, but some people take higher doses. It's usually taken early in the morning by mouth, so that you can match the bodies natural timing for aldosterone, which peaks shortly after waking up. Some people split their dose into morning and afternoon, although it should be active in your body for at least 24 hours whenever you take the pill. You'll get the best benefit from it if you can drink a large glass of water early in the morning, and perhaps a 1000mg salt tablet with it. I couldn't tolerate the salt tabs because they upset my stomach so much, but salty soup broth or pickle juice is another option.
I noticed a slight improvement in my symptoms within the first week of taking Flourinef, and continued to improve for about 6 months until I received the maximum benefit from it. Many other POTS patients report that it takes about 6 months before you get the full benefit of this drug. I was originally taking .3mg, but it made my blood pressure to high and gave me headaches, so then I took .2 mg for a few months, but Flourinef can lead to low potassium levels, which I seemed to be having, so I worked with my doctor to see what the lowest effective dose would be for me (since I prefer to be on the least amount of drugs possible). I am now taking.1mg in the morning and .05 mg (half a pill) at bedtime. I may have to go back up to the .2 mg per day dose, but I am trying to see how long I can tolerate the 1.5 mg dose per day.
Proamitine (generic name: midodrine)
Midodrine is another common POTS medication. It causes the veins in your body to constrict (this is called vasoconstriction), which increases your blood pressure, which allows more blood flow to return to your brain and heart, which should lessen or prevent low blood pressure related symptoms like dizziness, lightheadedness, fainting and tachycardia. I tried Midodrine for about two weeks, but I could not tolerate the side effects of constantly having goosebumps and the chills that would not go away even though it was 90 degrees and humid in August. It also caused me to get bradycardia, which is a very slow heartbeat, the opposite of tachycardia. Finally, it was giving me very high blood pressure and headaches when I laid down. These are fairly common side effects and many patients decide with their doctors to stop taking Midodrine because of these type of side effects. For me, I didn't think the side effects were worth it because it didn't seem to make me feel any better or more able to function anyway, but there are plenty of POTSies who have responded well to Midodrine, so don't be afraid to try it.
Beta-blockers
Beta-blockers are a large class of drugs that block the effects of epinephrine and norepinephrine in beta receptors in your body. Some common beta-blockers are atenolol, propanolol, toprol and metoprolol. Generally speaking, they are used to help prevent tachycardia. They also reduce the activity of the sympathetic nervous system, which can help some POTS patients. However, beta blockers can be dangerous for patients with asthma and allergies, so please make sure your doctors know if you have those conditions before they give you any beta blockers. And since POTSies tend to be very sensitive to drugs, maybe you can ask your doctor to start you on a very lose dose of beta blocker, and gradually increase the dose until you reach the best level for you. I was given a rather large dose of 50 mg of Toprol, a beta blocker, by a well meaning cardiologist, but I ended up passing in and out of consciousness for several hours when I was home alone before I was able to call for help and get to the hospital. For some reason, that dose of Toprol either lowered my heart rate so much, or lowered my blood pressure so much, that even when I was laying down flat with my legs elevated on the couch I was still passing out. When I was in the hospital, they tried me on a much lower dose of Toprol, but it still made me have very low blood pressure and gave me all of the symptoms that go along with low blood pressure (dizziness, vertigo, etc.). Since I had this reaction to even a low dose beta-blocker, and since I have asthma and allergies, I will not be taking any more beta blockers anytime soon. However, many POTSies have responded well to beta-blockers, so again, don't be afraid to try it just because it didn't work for me.
Beta/Alpha Andrenergic Agonists
Drugs like Labetalol have been used to treat patients with high blood pressure. They have also been used in POTS patients with the "hyperandrenergic" type of POTS. This drug blocks or slows down the nervous system in these patients. Like most POTS drugs, it has many side effects.
IV Saline Therapy
Some POTS patients, especially those with low blood volume (hypovolemic POTS) may benefit from intravenous saline therapy. I noticed even before my POTS diagnosis that every time I went to the Emergency Room and they gave me IV saline, I would feel so much better. I was having a hard time drinking enough fluid because of problems with reflux and difficulties with swallowing/choking, which are probably related to my autonomic nerve problems. Eventually I ran out of good veins from all the blood draws and IV lines I've had, so my doctor and I made the difficult decision to put a PICC line (peripherally inserted central catheter) in my left arm, in a large vein halfway between my elbow and my shoulder. The PICC line goes from the entry point on my arm about 40 cm into my vein and it rests just above my heart. PICC lines are often used for IV antibiotic therapy and for cancer patients who need chemo treatments over time. You can leave a PICC line in for several months, and I've even heard of some people leaving them in for about a year. However, the longer you leave it in, the higher your risk of getting an dangerous infection of a life threatening blood clot. It hurts pretty bad to get it put in, but I had it done by a radiologist in the hospital and he thankfully gave me a shot of novocaine before he started to insert it. Even with the novocaine it really hurt - probably because one of my POTS symptoms is an oversensitivity to pain, which could be from the neuropathy.
I am getting 50ml/hr 24 hours a day of IV saline + dextrose (a form of sugar), which equates to 1.8 liters of fluid per day. We noticed that I would tend to hyperventilate more often on the regular saline without the dextrose, which could be related to some form of hypoglycemia or acid base imbalance. My doctors aren't really sure, but the added dextrose seemed to make me feel better than plain old saline. It also helps me get enough calories, since I was having a hard time eating with all the reflux and throat issues I was having.
I have a nurse come to my house once a week to clean the entry point and change the bandages/dressing. I also have to flush the IV line myself with saline and Heparin everyday, and the Heparin gives me an instant migraine even though I am using a pediatric sized dose - the adult dose caused even worse migraines.
Despite the heparin headaches and the annoyance factor of carrying around a liter of saline and an IV pump about the size of an old nintendo Gameboy all day, I do think this has helped me more than anything else we have tried for my POTS. I am able to be upright and do more normal stuff than I was before.
I dread the day when my doctors decide it's time to pull the PICC line out, because I know I will probably feel so much worse again after that. They can put PICC lines into a few different veins in each arm, so I may be able to get a second one put in someday if needed. They can also give you saline through a port, which is a little device they surgically insert into your upper chest. Supposedly it is safer for long term saline than a PICC line is. That may be my next trip to the hospital when they have to pull my PICC line out (which I heard can hurt just as bad as going in).
Besides the 24/7 saline drip, I have also heard at least one POTS patient from the UK mention he was getting saline injections daily to help with his low blood volume. I'd imagine you'd have to have LOTS of injections to feel any real benefit to your blood volume, and when I asked my doctor about it, she thought it was a really bad idea.
Ivabradine
This drug is gain popularity with POTS patients in the U.K. and U.S. POTS researchers are expanding their interest in it. It reduces your heart rate, but in a different way that a beta blocker does. It's a type of cardiotonic agent. I have not tried this one yet.
Sandostatin (generic name: octreotide)
This is a potent drugs that blocks hormone receptors in you (a type of diabetes in which the patient excretes too much fluid and becomes very e taken by subcutaneous injection several times a day (in doctor speak "sub-q", which means the needle is injected just under the skin into the fat) or by an intravenous or PICC line. I took this when I was in the hospital before we knew I had POTS. The doctors thought I had carcinoid syndrome, which is caused by hormone secreting tumors. The sub-q injections weren't that painful and they did actually raise my blood pressure quite a bit, which made me feel a little more alive - my blood pressure was "barely alive" before they started giving me the octreotide shots. However, when the gave me intravenous Octreotide though my saline drip, it caused a sudden drastic increase in my blood pressure and one hell of a migraine headache. It's also a very expensive drug. Once they figured out I didn't have neuroendocrine cancer, they stopped giving it to me, but it is on my list of drugs to try again if nothing else works for my POTS.
ddAVP or Desmopressin
This drug is often used in patients with diabetes insipidus (a type of diabetes in which the patient excrete too much fluid and becomes very dehydrated). The drug limits the amount of urine produced by the kidneys. It can cause high blood pressure and other side effects, but it should not last that long in your system if it does cause high BP, especially if you try a very small dose. Some POTS patients have used it. I have asked my doctor about this one, since I would like to try it. My semi-educated guess is that it may help me retain more fluids, which may help minimize my low blood volume.
Selective Serotonin Re-uptake Inhibitors (SSRI drugs)
Many people know that SSRI drugs are commonly used to treat depression, but they are also used to regulate the autonomic nervous system and increase blood pressure in some POTS patients. Some commons SSRI drugs are Lexapro, Paxil, Prozac and Zoloft. Before we figured out that I had POTS, my doctors pressured me into taking Lexapro because they thought I was complaining about all of these wacky medical symptoms because I was depressed - the old "it's all in your head" diagnosis. I knew I wasn't depressed and that my symptoms weren't "in my head," but I took the Lexapro anyways just to see if it may make me feel better. I was so sick, I would have tried almost anything at that point. Since I am so sensitive to drugs, the doctor started me on a liquid dose of 1 mg per day on the first day. The standard adult dose is about 20 mg per day, so I was starting REALLY low. On the second day I took 2 mg, the third day I took 4 mg and the fourth day I took 5 mg. I didn't feel anything for the first three days, but on the fourth day I started getting the most horrible pins and needles and tingling and numbness all over my body. I couldn't feel my face and neck because I was so numb. My arms felt like I had bugs crawling all over them, even though I knew nothing was touching them. My feet were tingling and burning as if hot needles were poking me and electric shocks were running up and down my arms, legs and trunk. I couldn't see straight and I was having trouble thinking clearly and getting my words out coherently. I got really scared, even though I knew it was probably just a bad reaction to the Lexapro. When I finally called the doctor and told her about these symptoms, she told me to stop taking the Lexapro right away (which I would have done anyways because it made me so sick). Again, hundreds of thousands of people take SSRI drugs and do not have my kind of reaction, so don't be afraid to try one just because of me. In fact, I am currently talking with my doctor about trying a different type of drug that is similar, called an SNRI drug.
Serotonin-Norepineprhine Re-uptake Inhibitor (SNRI drugs)
SNRI drugs are similar to SSRI drugs, but with an added effect on norepineprhine re-uptake. Some research has shown these drugs to be more effective that SSRI drugs for POTS patients. Common SNRI drugs include Cymbalta and Effexor. Cymbalta has been used to help people with other neurological conditions like Fibromyalgia and peripheral neuropathy - both of which are causally related to POTS. If I can't find anything else that helps, I may try Cymbalta sometime later this year.
Wellbutrin (generic name: bupropion)
This drug works by inhibiting norepinephrine and dopamine re-uptake. It also acts as a nicotinic acetylcholine receptor antagonist. Some POTS doctors have found that a combination of two antidepressants, usually an SSRI or SNRI with a Wellbutrin like drug, can be more effective in helping POTS patients.
Tricyclic and Tetracyclic Antidepressants
These drugs are sometimes used in POTS patients, but probably not as often as the SSRI and SNRI drugs.
Attention Deficit Disorder Drugs
Drugs that increase dopamine and norepinephrine levels, such as Ritalin and Adderall, increase vasoconstriction and blood pressure and have been used to help some POTS patients.
Monoamine Oxidase Inhibitors
While these have reportedly been given to some POTS patients, they are not commonly prescribed for POTS.
Benzodiazepine Drugs
Medications such as Xanax, Klonopin and Ativan are commonly used to treat anxiety, but they have also been used by POTS patients because many POTS patients have elevated epinephrine levels, which can trigger anxiety like symptoms. These drugs are classified as "benzos" or benzodiazepine type drugs by doctors. Valium is also in this class. These drugs can be very addictive and your body can build up a resistance to them over time. Some of them can lower your blood pressure and cause dizziness, which POTSies are already suffering from, so they have to be taken with caution.
I was given a large dose of Xanax by a nurse in the hospital who thought I was just having a panic attack when I ended up in the ER. I had never taken any medication like this in my life and I knew I wasn't having a panic attack (because panic attacks cause very high blood pressure, not the extremely low blood pressure I was having), but she pressured me and was at me and telling me to "stop being uncooperative" as she yelled at me to take it. Against my better judgement, I took it and it dropped my blood pressure so low I started passing out again laying down flat in my hospital bed. My head was spinning so much form all the vertigo this caused, that I actually held onto the railings of my hospital bed all night because I felt like I was going to fall out of the bed. I felt like a drunken sailor on a ship in a hurricane. These drugs are supposed to wear off pretty quickly (6 hours or so), but this dose must have been big enough to stay in my system for about 2 days.
Months later, when I was finally given the correct diagnosis, my doctors thought I might benefit from trying a small dose of Xanax again, and they said it probably wouldn't crash my blood pressure like it did the first time since I was on Flourinef and a saline drip, which was increasing my blood volume. I was really scared to try it after what happened the last time, but since I was in the hospital anyway, which was probably safer than trying it at home, I asked them to find me the smallest dose pill of Xanax, and then cut it in half. The doctors all swore that this dose was too small to feel anything and it wouldn't work. They told me that some people take 5-10 milligrams of Xanax every day. I said "better safe that sorry" and they agreed that I could have the super small dose to start and we could always try a slightly larger dose of the super small does didn't do anything. The smallest Xanax pills available in the US are .25 mg (one-quarter of a milligram). When you cut it in half, the dose I received, it is .0125 mg (one-eight of a milligram). Within about 10 minutes, I felt a little drowsy - but nothing terrible. It seemed to work well at counteracting my elevated adrenaline levels, which is caused by the low blood volume. I felt a little less "wired" and a little more able to relax, but still not back to my normal old self. Since I didn't have a bad reaction, I agreed to try the whole .25 mg pill the next day, to see if it made me feel any better than the super small dose. Well, within 10 minutes of taking the .25 mg dose, I was giggling like a school girl and throwing watermelon slices at my husband like an idiot. I thought I was really funny and that everyone around me was funny. Apparently the .25 mg dose was a little bit to much for me. So I have the .0125 half pill doses for when my tachycardia gets really bad, but I won't let myself take it more than once every few days, because it is so addictive and the last thing I need on top of my POTS is a drug addiction problem.
ACE Inhibitors< Angiotensin converting enzyme inhibitors, are usually used to treat high blood pressure (hypertension). Some POTS patients have very high blood pressure or spike in blood pressure to high levels with low blood pressure the rest of the time. Some POTSies have used ACE inhibitors to treat their POTS. It is also used for certain cardiac and kidney conditions unrelated to high blood pressure.
Clonidine
POTSies with increased sympathetic nervous system activity or with elevated catecholamine levels tend to benefit the most from Clonidine. It lowers catecholamine production (epinephrine and norepinephrine). It can cause drastic shifts in blood pressure, so you should be under careful observation the first few days you are on it.
Mestinon (generic name: pyridostigmine)
This drug prevents the breakdown of acetylcholine, an important neurotransmitter that sends messages between nerve cells. This promotes autonomic nervous system activity. This drug is especially effective in patients who exhibit symptoms of excessive sympathetic activity. Many Gulf War Veterans attribute Gulf War Syndrome illness to the mass use of pyridostigmine amongst the troops, which was done to ward off the effects of nerve gas. I am not sure if this is the true cause of Gulf War Syndrome, but I do know that doctors have prescribed this drug to patients with myasthenia gravis, another nervous system disorder, for years with a decent safety record. I have not tried this drug yet, but I would consider it after we have addressed my blood volume issues, since I seem to have sympathetic overactivity.
Norpace (generic name: disopyramide)
This drug is used to treat heart arrhythmias and has helped some POTS patients. It lowers your bodies production of epinephrine and norepineprhine.
Procrit (generic name: erythropoietin)
This is a synthetic form of a natural hormone that triggers red blood cell production from your bone marrow. It is commonly used to treat anemia, but it helps some POTS patients by increasing blood volume. It is usually given by injection or through and IV or PICC line. It is very expensive and there are dangerous side effects, including blood clots. Despite the dangers, this is probably the next drug my doctor and I will try a small dose of, since we know I have very low blood volume and I am so short of breath from the low hemoglobin levels I have. You usually have to work with a hematologist (a blood specialist) to be prescribed this drug.
Lyrica
This drug is used to treat pain caused by your nervous system -which is called neuropathic pain. Many POTSies have neuropathic pain and some have be diagnosed with Fibromyalgia. I have had bouts of shooting nerve pain all over my body since I first became sick with POTS. I have not tried medication for it yet because I am trying to take as few meds as possible, since I seem to get every bad reaction possible. Some POTS patients also report improvement in concentration and energy while on Lyrica.
Psuedoephedrine
Over the counter pseudophed has been used by some POTS patients because it promotes the release of norepinephrine, which increases vasoconstriction. I am not a doctor, but I would advise against trying this drug unless you know you have low norepinephrine levels. Most POTS patients have elevated norepinephrine levels and I have seen some medical literature advising POTS patients NOT to take stimulant drugs like pseudoephedrine. POTS patients should do their research homework and talk to their doctor before taking any new drugs, even over the counter ones. Even before I had POTS, I could not take pseudophed because it triggered tachycardia in me.
Theophylline
This is an "old" asthma drug that is sometimes still used to treat asthma and other respiratory illnesses. I know of one person taking this for her NCS. NCS stands for Neurocardiogenic Syncope, sometimes called vasovagal syncope, which is similar to POTS because it involves occasional fainting. Theophylline stimulates production of epinephrine and norepineprhine, which increases blood pressure. This drug has a very narrow therapeutic window, meaning that it's very easy to take to much or not enough - it's tricky to find the right size dose. There are also many side effects of this drug. I took this for my asthma when I was a little kid in the 1980s without any problems, but I have not taken it for POTS as an adult.
Birth Control Drugs
Many female POTS patients find that their POTS symptoms vary drastically throughout the month due to natural hormonal changes related to a woman's menstrual cycle. Some female POTSies have used birth control pills that contain estrogen and progestin, to prevent or minimize the hormonal changes that aggravate their condition. Like most women, I get a little water retention and bloating just before my period. This used to annoy me when I was healthy and did not have POTS - time to break out the "fat day" jeans. Now, since I am so hypovolemic (low blood volume), I actually feel better when my lady hormones make me retain water and feel all puffy. And since I have lost 50 lbs. since I first got sick, a few pounds of added water do not require me to break out the "fat jeans" anymore. I have considered looking for a birth control pill that makes me bloated all the time, but since I had bad reactions to birth control pills (just like my mom and my sister too), my doctors agree that I should not be messing with my hormones, especially the ones that are working normally. Essentially, Flourinef is the hormone pill that should make you bloated all the time - although it does not seem to work that way for me.
So as a reminder, this is not a complete list of drugs that may help POTS patients feel a little better. I strongly encourage all POTSies to visit one of the major medical research centers studies POTS at least once during their illness so they and their local doctor can really learn about all the cutting edge things these centers are doing to try to help POTS patients.
If you have tried one of these medications, or something completely different for your POTS related symptoms, please leave a comment here so other people can learn from your experience. Did any of these drugs help you? Did they make you worse? Did they cause side effects you were willing to tolerate?
There are a number of lifestyle modifications you should try before you start drugging yourself up with medications, such as drinking 2-3 liters of electrolyte filled fluid per day and increasing your salt intake up to 3-10g (3,000-10,000mg) per day. If you have high blood pressure, you definitely should talk to your doctor before increase your salt & fluid intake. See my "Coping With POTS" post for more info on the lifestyle changes you can make that may help you feel a little bit better before you start trying out different medications. Many POTS patients also have vitamin deficiencies, including yours truly, and once we identified my vitamin deficiciens and started vitamin therapy, I felt some noticeable improvement in my health. See my "Check Your Vitamin Levels!" post for more info on that.
There are many drugs that researchers and creative doctors have used to try to help POTS patients feel better. Before you start trying these drugs, it would be a really good idea to try to get as much information as possible on what "type" of POTS you have - so you can start with the drugs that are more likely to help your "type" or subclass of POTS. For more information about the different subclasses of POTS, I suggest reading these medical journal articles (the first two mentioned) and sharing them with your doctor.
If you're doctor isn't qualified or willing to help you get the tests you need to determine what type of POTS you have, I highly suggest you get yourself a consultation at a major research based medical center that has experience with POTS, such as Vanderbilt, Mayo Clinic, Cleveland Clinic, etc. See my blog post for more info on how to find a doctor with expertise in POTS.
Once you have tried the lifestyle modifications and tried your best to figure out what type of POTS you have, here are some of the drugs your doctor may end up prescribing you. This list is by no means complete and by including the drugs on this list, I am not suggesting they are approved for POTS (to my knowledge, no drug is approved by the FDA to treat POTS) or that they are the right drugs for you. Your doctor needs to determine that.
Flourinef (generic name: fludrocortisone)
This is one of the most common medications given to POTS patients. Flourinef helps your kidneys retain more salt, which in turn helps your kidneys conserve water, which in turn increases your blood volume, which increases your blood pressure and in theory lessens your dizziness, vertigo, lightheadedness and fainting. This works especially well in the "hypovolemic" (low blood volume) type of POTS and in patients with low aldosterone levels. Flourinef is a synthetic/man-made form of aldosterone.
Your may doctor have to tinker with the dosing for a while before you find the ideal dose. It's important to track your blood pressure several time a day when you first start Flourinef, and you may want to purchase a "hat" for your toilet which allows you to track the volume of urine you are excreting. This information will be helpful for your doctor to know whether you are getting the ideal dose. The hat will also make it easier for your to collect urine samples, which your doctor should do at least once a month once you are on Flourinef, to make sure your sodium, potassium and other electrolyte levels are normal. Your doctor can check electrolyte levels through blood tests, but since many POTSies already have low blood volume, you can try to avoid blood tests as much as possible. Regular monitoring of your electrolyte levels while on Flourinef is important, because it can lower your potassium levels, which can be dangerous if it gets too low.
Most POTSies take between .1 mg and .3 mg of Flourinef per day, but some people take higher doses. It's usually taken early in the morning by mouth, so that you can match the bodies natural timing for aldosterone, which peaks shortly after waking up. Some people split their dose into morning and afternoon, although it should be active in your body for at least 24 hours whenever you take the pill. You'll get the best benefit from it if you can drink a large glass of water early in the morning, and perhaps a 1000mg salt tablet with it. I couldn't tolerate the salt tabs because they upset my stomach so much, but salty soup broth or pickle juice is another option.
I noticed a slight improvement in my symptoms within the first week of taking Flourinef, and continued to improve for about 6 months until I received the maximum benefit from it. Many other POTS patients report that it takes about 6 months before you get the full benefit of this drug. I was originally taking .3mg, but it made my blood pressure to high and gave me headaches, so then I took .2 mg for a few months, but Flourinef can lead to low potassium levels, which I seemed to be having, so I worked with my doctor to see what the lowest effective dose would be for me (since I prefer to be on the least amount of drugs possible). I am now taking.1mg in the morning and .05 mg (half a pill) at bedtime. I may have to go back up to the .2 mg per day dose, but I am trying to see how long I can tolerate the 1.5 mg dose per day.
Proamitine (generic name: midodrine)
Midodrine is another common POTS medication. It causes the veins in your body to constrict (this is called vasoconstriction), which increases your blood pressure, which allows more blood flow to return to your brain and heart, which should lessen or prevent low blood pressure related symptoms like dizziness, lightheadedness, fainting and tachycardia. I tried Midodrine for about two weeks, but I could not tolerate the side effects of constantly having goosebumps and the chills that would not go away even though it was 90 degrees and humid in August. It also caused me to get bradycardia, which is a very slow heartbeat, the opposite of tachycardia. Finally, it was giving me very high blood pressure and headaches when I laid down. These are fairly common side effects and many patients decide with their doctors to stop taking Midodrine because of these type of side effects. For me, I didn't think the side effects were worth it because it didn't seem to make me feel any better or more able to function anyway, but there are plenty of POTSies who have responded well to Midodrine, so don't be afraid to try it.
Beta-blockers
Beta-blockers are a large class of drugs that block the effects of epinephrine and norepinephrine in beta receptors in your body. Some common beta-blockers are atenolol, propanolol, toprol and metoprolol. Generally speaking, they are used to help prevent tachycardia. They also reduce the activity of the sympathetic nervous system, which can help some POTS patients. However, beta blockers can be dangerous for patients with asthma and allergies, so please make sure your doctors know if you have those conditions before they give you any beta blockers. And since POTSies tend to be very sensitive to drugs, maybe you can ask your doctor to start you on a very lose dose of beta blocker, and gradually increase the dose until you reach the best level for you. I was given a rather large dose of 50 mg of Toprol, a beta blocker, by a well meaning cardiologist, but I ended up passing in and out of consciousness for several hours when I was home alone before I was able to call for help and get to the hospital. For some reason, that dose of Toprol either lowered my heart rate so much, or lowered my blood pressure so much, that even when I was laying down flat with my legs elevated on the couch I was still passing out. When I was in the hospital, they tried me on a much lower dose of Toprol, but it still made me have very low blood pressure and gave me all of the symptoms that go along with low blood pressure (dizziness, vertigo, etc.). Since I had this reaction to even a low dose beta-blocker, and since I have asthma and allergies, I will not be taking any more beta blockers anytime soon. However, many POTSies have responded well to beta-blockers, so again, don't be afraid to try it just because it didn't work for me.
Beta/Alpha Andrenergic Agonists
Drugs like Labetalol have been used to treat patients with high blood pressure. They have also been used in POTS patients with the "hyperandrenergic" type of POTS. This drug blocks or slows down the nervous system in these patients. Like most POTS drugs, it has many side effects.
IV Saline Therapy
Some POTS patients, especially those with low blood volume (hypovolemic POTS) may benefit from intravenous saline therapy. I noticed even before my POTS diagnosis that every time I went to the Emergency Room and they gave me IV saline, I would feel so much better. I was having a hard time drinking enough fluid because of problems with reflux and difficulties with swallowing/choking, which are probably related to my autonomic nerve problems. Eventually I ran out of good veins from all the blood draws and IV lines I've had, so my doctor and I made the difficult decision to put a PICC line (peripherally inserted central catheter) in my left arm, in a large vein halfway between my elbow and my shoulder. The PICC line goes from the entry point on my arm about 40 cm into my vein and it rests just above my heart. PICC lines are often used for IV antibiotic therapy and for cancer patients who need chemo treatments over time. You can leave a PICC line in for several months, and I've even heard of some people leaving them in for about a year. However, the longer you leave it in, the higher your risk of getting an dangerous infection of a life threatening blood clot. It hurts pretty bad to get it put in, but I had it done by a radiologist in the hospital and he thankfully gave me a shot of novocaine before he started to insert it. Even with the novocaine it really hurt - probably because one of my POTS symptoms is an oversensitivity to pain, which could be from the neuropathy.
I am getting 50ml/hr 24 hours a day of IV saline + dextrose (a form of sugar), which equates to 1.8 liters of fluid per day. We noticed that I would tend to hyperventilate more often on the regular saline without the dextrose, which could be related to some form of hypoglycemia or acid base imbalance. My doctors aren't really sure, but the added dextrose seemed to make me feel better than plain old saline. It also helps me get enough calories, since I was having a hard time eating with all the reflux and throat issues I was having.
I have a nurse come to my house once a week to clean the entry point and change the bandages/dressing. I also have to flush the IV line myself with saline and Heparin everyday, and the Heparin gives me an instant migraine even though I am using a pediatric sized dose - the adult dose caused even worse migraines.
Despite the heparin headaches and the annoyance factor of carrying around a liter of saline and an IV pump about the size of an old nintendo Gameboy all day, I do think this has helped me more than anything else we have tried for my POTS. I am able to be upright and do more normal stuff than I was before.
I dread the day when my doctors decide it's time to pull the PICC line out, because I know I will probably feel so much worse again after that. They can put PICC lines into a few different veins in each arm, so I may be able to get a second one put in someday if needed. They can also give you saline through a port, which is a little device they surgically insert into your upper chest. Supposedly it is safer for long term saline than a PICC line is. That may be my next trip to the hospital when they have to pull my PICC line out (which I heard can hurt just as bad as going in).
Besides the 24/7 saline drip, I have also heard at least one POTS patient from the UK mention he was getting saline injections daily to help with his low blood volume. I'd imagine you'd have to have LOTS of injections to feel any real benefit to your blood volume, and when I asked my doctor about it, she thought it was a really bad idea.
Ivabradine
This drug is gain popularity with POTS patients in the U.K. and U.S. POTS researchers are expanding their interest in it. It reduces your heart rate, but in a different way that a beta blocker does. It's a type of cardiotonic agent. I have not tried this one yet.
Sandostatin (generic name: octreotide)
This is a potent drugs that blocks hormone receptors in you (a type of diabetes in which the patient excretes too much fluid and becomes very e taken by subcutaneous injection several times a day (in doctor speak "sub-q", which means the needle is injected just under the skin into the fat) or by an intravenous or PICC line. I took this when I was in the hospital before we knew I had POTS. The doctors thought I had carcinoid syndrome, which is caused by hormone secreting tumors. The sub-q injections weren't that painful and they did actually raise my blood pressure quite a bit, which made me feel a little more alive - my blood pressure was "barely alive" before they started giving me the octreotide shots. However, when the gave me intravenous Octreotide though my saline drip, it caused a sudden drastic increase in my blood pressure and one hell of a migraine headache. It's also a very expensive drug. Once they figured out I didn't have neuroendocrine cancer, they stopped giving it to me, but it is on my list of drugs to try again if nothing else works for my POTS.
ddAVP or Desmopressin
This drug is often used in patients with diabetes insipidus (a type of diabetes in which the patient excrete too much fluid and becomes very dehydrated). The drug limits the amount of urine produced by the kidneys. It can cause high blood pressure and other side effects, but it should not last that long in your system if it does cause high BP, especially if you try a very small dose. Some POTS patients have used it. I have asked my doctor about this one, since I would like to try it. My semi-educated guess is that it may help me retain more fluids, which may help minimize my low blood volume.
Selective Serotonin Re-uptake Inhibitors (SSRI drugs)
Many people know that SSRI drugs are commonly used to treat depression, but they are also used to regulate the autonomic nervous system and increase blood pressure in some POTS patients. Some commons SSRI drugs are Lexapro, Paxil, Prozac and Zoloft. Before we figured out that I had POTS, my doctors pressured me into taking Lexapro because they thought I was complaining about all of these wacky medical symptoms because I was depressed - the old "it's all in your head" diagnosis. I knew I wasn't depressed and that my symptoms weren't "in my head," but I took the Lexapro anyways just to see if it may make me feel better. I was so sick, I would have tried almost anything at that point. Since I am so sensitive to drugs, the doctor started me on a liquid dose of 1 mg per day on the first day. The standard adult dose is about 20 mg per day, so I was starting REALLY low. On the second day I took 2 mg, the third day I took 4 mg and the fourth day I took 5 mg. I didn't feel anything for the first three days, but on the fourth day I started getting the most horrible pins and needles and tingling and numbness all over my body. I couldn't feel my face and neck because I was so numb. My arms felt like I had bugs crawling all over them, even though I knew nothing was touching them. My feet were tingling and burning as if hot needles were poking me and electric shocks were running up and down my arms, legs and trunk. I couldn't see straight and I was having trouble thinking clearly and getting my words out coherently. I got really scared, even though I knew it was probably just a bad reaction to the Lexapro. When I finally called the doctor and told her about these symptoms, she told me to stop taking the Lexapro right away (which I would have done anyways because it made me so sick). Again, hundreds of thousands of people take SSRI drugs and do not have my kind of reaction, so don't be afraid to try one just because of me. In fact, I am currently talking with my doctor about trying a different type of drug that is similar, called an SNRI drug.
Serotonin-Norepineprhine Re-uptake Inhibitor (SNRI drugs)
SNRI drugs are similar to SSRI drugs, but with an added effect on norepineprhine re-uptake. Some research has shown these drugs to be more effective that SSRI drugs for POTS patients. Common SNRI drugs include Cymbalta and Effexor. Cymbalta has been used to help people with other neurological conditions like Fibromyalgia and peripheral neuropathy - both of which are causally related to POTS. If I can't find anything else that helps, I may try Cymbalta sometime later this year.
Wellbutrin (generic name: bupropion)
This drug works by inhibiting norepinephrine and dopamine re-uptake. It also acts as a nicotinic acetylcholine receptor antagonist. Some POTS doctors have found that a combination of two antidepressants, usually an SSRI or SNRI with a Wellbutrin like drug, can be more effective in helping POTS patients.
Tricyclic and Tetracyclic Antidepressants
These drugs are sometimes used in POTS patients, but probably not as often as the SSRI and SNRI drugs.
Attention Deficit Disorder Drugs
Drugs that increase dopamine and norepinephrine levels, such as Ritalin and Adderall, increase vasoconstriction and blood pressure and have been used to help some POTS patients.
Monoamine Oxidase Inhibitors
While these have reportedly been given to some POTS patients, they are not commonly prescribed for POTS.
Benzodiazepine Drugs
Medications such as Xanax, Klonopin and Ativan are commonly used to treat anxiety, but they have also been used by POTS patients because many POTS patients have elevated epinephrine levels, which can trigger anxiety like symptoms. These drugs are classified as "benzos" or benzodiazepine type drugs by doctors. Valium is also in this class. These drugs can be very addictive and your body can build up a resistance to them over time. Some of them can lower your blood pressure and cause dizziness, which POTSies are already suffering from, so they have to be taken with caution.
I was given a large dose of Xanax by a nurse in the hospital who thought I was just having a panic attack when I ended up in the ER. I had never taken any medication like this in my life and I knew I wasn't having a panic attack (because panic attacks cause very high blood pressure, not the extremely low blood pressure I was having), but she pressured me and was at me and telling me to "stop being uncooperative" as she yelled at me to take it. Against my better judgement, I took it and it dropped my blood pressure so low I started passing out again laying down flat in my hospital bed. My head was spinning so much form all the vertigo this caused, that I actually held onto the railings of my hospital bed all night because I felt like I was going to fall out of the bed. I felt like a drunken sailor on a ship in a hurricane. These drugs are supposed to wear off pretty quickly (6 hours or so), but this dose must have been big enough to stay in my system for about 2 days.
Months later, when I was finally given the correct diagnosis, my doctors thought I might benefit from trying a small dose of Xanax again, and they said it probably wouldn't crash my blood pressure like it did the first time since I was on Flourinef and a saline drip, which was increasing my blood volume. I was really scared to try it after what happened the last time, but since I was in the hospital anyway, which was probably safer than trying it at home, I asked them to find me the smallest dose pill of Xanax, and then cut it in half. The doctors all swore that this dose was too small to feel anything and it wouldn't work. They told me that some people take 5-10 milligrams of Xanax every day. I said "better safe that sorry" and they agreed that I could have the super small dose to start and we could always try a slightly larger dose of the super small does didn't do anything. The smallest Xanax pills available in the US are .25 mg (one-quarter of a milligram). When you cut it in half, the dose I received, it is .0125 mg (one-eight of a milligram). Within about 10 minutes, I felt a little drowsy - but nothing terrible. It seemed to work well at counteracting my elevated adrenaline levels, which is caused by the low blood volume. I felt a little less "wired" and a little more able to relax, but still not back to my normal old self. Since I didn't have a bad reaction, I agreed to try the whole .25 mg pill the next day, to see if it made me feel any better than the super small dose. Well, within 10 minutes of taking the .25 mg dose, I was giggling like a school girl and throwing watermelon slices at my husband like an idiot. I thought I was really funny and that everyone around me was funny. Apparently the .25 mg dose was a little bit to much for me. So I have the .0125 half pill doses for when my tachycardia gets really bad, but I won't let myself take it more than once every few days, because it is so addictive and the last thing I need on top of my POTS is a drug addiction problem.
ACE Inhibitors< Angiotensin converting enzyme inhibitors, are usually used to treat high blood pressure (hypertension). Some POTS patients have very high blood pressure or spike in blood pressure to high levels with low blood pressure the rest of the time. Some POTSies have used ACE inhibitors to treat their POTS. It is also used for certain cardiac and kidney conditions unrelated to high blood pressure.
Clonidine
POTSies with increased sympathetic nervous system activity or with elevated catecholamine levels tend to benefit the most from Clonidine. It lowers catecholamine production (epinephrine and norepinephrine). It can cause drastic shifts in blood pressure, so you should be under careful observation the first few days you are on it.
Mestinon (generic name: pyridostigmine)
This drug prevents the breakdown of acetylcholine, an important neurotransmitter that sends messages between nerve cells. This promotes autonomic nervous system activity. This drug is especially effective in patients who exhibit symptoms of excessive sympathetic activity. Many Gulf War Veterans attribute Gulf War Syndrome illness to the mass use of pyridostigmine amongst the troops, which was done to ward off the effects of nerve gas. I am not sure if this is the true cause of Gulf War Syndrome, but I do know that doctors have prescribed this drug to patients with myasthenia gravis, another nervous system disorder, for years with a decent safety record. I have not tried this drug yet, but I would consider it after we have addressed my blood volume issues, since I seem to have sympathetic overactivity.
Norpace (generic name: disopyramide)
This drug is used to treat heart arrhythmias and has helped some POTS patients. It lowers your bodies production of epinephrine and norepineprhine.
Procrit (generic name: erythropoietin)
This is a synthetic form of a natural hormone that triggers red blood cell production from your bone marrow. It is commonly used to treat anemia, but it helps some POTS patients by increasing blood volume. It is usually given by injection or through and IV or PICC line. It is very expensive and there are dangerous side effects, including blood clots. Despite the dangers, this is probably the next drug my doctor and I will try a small dose of, since we know I have very low blood volume and I am so short of breath from the low hemoglobin levels I have. You usually have to work with a hematologist (a blood specialist) to be prescribed this drug.
Lyrica
This drug is used to treat pain caused by your nervous system -which is called neuropathic pain. Many POTSies have neuropathic pain and some have be diagnosed with Fibromyalgia. I have had bouts of shooting nerve pain all over my body since I first became sick with POTS. I have not tried medication for it yet because I am trying to take as few meds as possible, since I seem to get every bad reaction possible. Some POTS patients also report improvement in concentration and energy while on Lyrica.
Psuedoephedrine
Over the counter pseudophed has been used by some POTS patients because it promotes the release of norepinephrine, which increases vasoconstriction. I am not a doctor, but I would advise against trying this drug unless you know you have low norepinephrine levels. Most POTS patients have elevated norepinephrine levels and I have seen some medical literature advising POTS patients NOT to take stimulant drugs like pseudoephedrine. POTS patients should do their research homework and talk to their doctor before taking any new drugs, even over the counter ones. Even before I had POTS, I could not take pseudophed because it triggered tachycardia in me.
Theophylline
This is an "old" asthma drug that is sometimes still used to treat asthma and other respiratory illnesses. I know of one person taking this for her NCS. NCS stands for Neurocardiogenic Syncope, sometimes called vasovagal syncope, which is similar to POTS because it involves occasional fainting. Theophylline stimulates production of epinephrine and norepineprhine, which increases blood pressure. This drug has a very narrow therapeutic window, meaning that it's very easy to take to much or not enough - it's tricky to find the right size dose. There are also many side effects of this drug. I took this for my asthma when I was a little kid in the 1980s without any problems, but I have not taken it for POTS as an adult.
Birth Control Drugs
Many female POTS patients find that their POTS symptoms vary drastically throughout the month due to natural hormonal changes related to a woman's menstrual cycle. Some female POTSies have used birth control pills that contain estrogen and progestin, to prevent or minimize the hormonal changes that aggravate their condition. Like most women, I get a little water retention and bloating just before my period. This used to annoy me when I was healthy and did not have POTS - time to break out the "fat day" jeans. Now, since I am so hypovolemic (low blood volume), I actually feel better when my lady hormones make me retain water and feel all puffy. And since I have lost 50 lbs. since I first got sick, a few pounds of added water do not require me to break out the "fat jeans" anymore. I have considered looking for a birth control pill that makes me bloated all the time, but since I had bad reactions to birth control pills (just like my mom and my sister too), my doctors agree that I should not be messing with my hormones, especially the ones that are working normally. Essentially, Flourinef is the hormone pill that should make you bloated all the time - although it does not seem to work that way for me.
So as a reminder, this is not a complete list of drugs that may help POTS patients feel a little better. I strongly encourage all POTSies to visit one of the major medical research centers studies POTS at least once during their illness so they and their local doctor can really learn about all the cutting edge things these centers are doing to try to help POTS patients.
If you have tried one of these medications, or something completely different for your POTS related symptoms, please leave a comment here so other people can learn from your experience. Did any of these drugs help you? Did they make you worse? Did they cause side effects you were willing to tolerate?
Thanks for posting all this information, POTSgrrl. We read your blog, and think about you often.
ReplyDeleteI had a significant worsening of sypmotms on Propenal and had to stop taking it immediately. Next I was put on Cardizem and it has helped significantly (from disabled to functioning) but even this doesn't help when it's warmer (March-Nov here) and I really hate the hottest months. I feel so much better than I used to but now experiance more CFS symptoms than the earlier panic disorder symptoms. Anyone else?
ReplyDeleteTHANK YOU SOOOO MUCH POTSgrrl. I FINALLY FOUND SOMEONE WHO UNDERSTANDS ME PERFECTLY. EVERYTHING YOU HAVE GONE THROUGH IS EXACTLY WHATS HAPPENED WITH ME AND IS HAPPENING. I AM 24 YEAR OLD MOTHER OF 2 AND WAS DIAGNOSED WITH POTS IN OCTOBER 2010. I AM STILL STRUGGLING TO MANAGE MY NEW LIFE. I WOULD REALLY LIKE TO HEAR SOME POINTERS FROM SOMEONE WHO'S LIFE IS SIMILAR TO MINE...
ReplyDeleteTO BECCA MATHERLY
ReplyDeleteI SOMETIMES DO FEEL SOME SYMPTOMS OF CFS TOO BUT, AT TIMES I CANT DIFFER THEM FROM POTS...THE PANIC I FEEL COMES IN AFTER I FEEL THE SYMPTOMS OF POTS! I DONT THINK I AM USED TO IT YET.
I'd be hesitant about midodrine. I read that there isn't enough data to prove that it's effective and that the FDA recommends not using it for lowering blood pressure:
ReplyDeletehttp://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm225468.htm
http://www.theheart.org/article/1110411.do
Be very careful with the drugs that you take for POTS. I was started on metoprolol 6 months ago, began my dose of 12.5 mg, didnt work so they kept upping the dose. I am now on 100 mg and still have break through tachycardia, however I think I am less functional now because of the side effects of the beta blocker. I litterally cant get out of bed until 12 pm. I am also on mestinon and midodrine. I never had ectopy before starting these meds, now I have horrible PVC's, PAC's and feel I go into A-Fib/A-Flutter. So these drugs can be proarrythmic.
ReplyDeleteI had to stop all these meds two weeks ago because I found out I am pregnant and I was a complete wreck. Now that Im drinking 4 liters of gatorade per day I am feeling better, but I still feel pretty crappy until I get that first liter in.
I noticed my symptoms are worse late at night and early in the morning, anyone else feel this way??