Mar 30, 2011

Check Your Vitamin Levels!

I had what felt like a million blood tests when we were trying to figure out my diagnosis, for nine months before we realized it was POTS. Then it seemed like I had a few hundred other blood tests once we suspected I had POTS, because we were trying to find the "cause" of my POTS symptoms.

Well, we don't know for sure what's causing my POTS. But, I went to a holistic doctor who ran some blood tests to look at my vitamin levels. Sure enough, he figured out that I had really low Vitamin D levels. Then I was referred to a hematologist, and he figured out that I also had really low iron levels. My family doctor also suggested that I try a Vitamin B-12 injection, to see if it would give me more energy, and it did, even though my vitamin B-12 blood levels were within the "normal" range on my blood tests.

If you have POTS, I highly suggest getting your vitamin levels checked out by a doctor experienced in vitamin testing. So many POTSies have gastrointestinal issues that can interfere with the proper absorption of vitamins, and vitamin deficiencies can further complicate any chronic illness. And for some "lucky" POTSies, a vitamin deficiency could actually be the underlying cause of your POTS. I say lucky because if a vitamin deficiency is triggering your POTS symptoms, it can usually be fixed with supplementation of that vitamin. For example, doctors know that sometime POTS can be caused by peripheral nerve damage. And sometimes peripheral nerve damage can be caused by a Vitamin B-12 deficiency. So if you have POTS and confirmed peripheral nerve damage and you're Vitamin B-12 levels are really low, that could be the underlying cause of your POTS problem. In theory your nerve damage may be able to be reversed if you get your Vitamin B-12 levels back to normal, with a special diet and/or B-12 injections. That's because peripheral nerves can repair themselves and even grow back about 1mm per year in ideal conditions.

Some more "traditional" doctors will tell you that testing vitamin levels in your blood is not worth it because the tests are unreliable, or that "if you're eating healthy, you're levels are fine." Some of these "traditional" doctors will tell you it's pointless to test your vitamin levels because some of your vitamin levels change so rapidly in your blood that a one time blood test may not reflect the overall levels. Each vitamin is different, and some can be measured accurately with one blood test, and others have to be measured several times if you want a more accurate picture. If you're doctor thinks vitamin testing is bogus, then seek out another doctor until you find one who knows how to run these type of tests. An doctor specializing in alternative or holistic medicine, and a hematologist are probably the two types of doctors who you may want to start with if your regular doctor won't help.

Here's what I have learned about Vitamin D, Vitamin B-12 and Iron, as it is related to POTS:

Vitamin D
There are research papers that say that low Vitamin D levels are commonly seen in POTS patients. I'm not sure if it's because so many of us POTS patients are stuck indoors not feeling well most of the time, or because we have trouble absorbing Vitamin D from the foods we eat, because of the gastrointestinal problems that so many of us have.

Vitamin D has many functions in the body. It is important for proper functioning of your immune system, cardiovascular health, neuromuscular functioning and bone density. It prevents inflammation and plays a major role in promoting the absorption of calcium from your intestines.

Vitamin D comes in a few different forms, each of which plays a different role in our body. Vitamin D2 (ergocalciferol) and Vitamin D3(cholecalciferol) are the two most important forms of Vitamin D that out bodies need. Vitamin D2 is absorbed from the foods you eat and Vitamin D3 is produced when your skin is exposed to sunlight and ultra-violet radiation.

Some doctor's will only test the Vitamin D2 levels, but you should consider having both tested. Even if you are within the "normal" range, you may want to try to get your levels up to the higher end of normal.

If you're levels are low, your doctor can give you one or more injections of IV infusions to rapidly raise your Vitamin D levels, or a high dose prescription pill that is 10,000 IU (International Units) or more. Or you can buy your own vitamins over the counter, which are usually 1000 IU per pill and, with your doctor's guidance of course, you can take several of these pills per day. Keep in mind that if your low Vitamin D may have been caused by poor gastrointestinal absorption in the first place, you may have a hard time absorbing the full dose of the pills you take. To get the best bang for your buck, be sure to eat some fatty foods with the pill - like peanut butter, meat or dairy.

If you tested low and then you took large doses of Vitamin D to try to raise your levels back to normal, you may want to get a follow up test to make sure you've corrected the low levels. Then your doctor may want you to get regular supplements to maintain an appropriate level.

If you're indoors a lot, or all covered up when you go outside because it's a chilly winter day, or if you're slathering on the sunscreen on a warm summer day, you're not going to get the benefit of Vitamin D production from skin exposure. And most people who live in the US live too far north to get enough Vitamin D from sunlight year round - especially in the winter months when the sun's rays aren't as strong, there are fewer hours of daylight and we are all bundled up in doors because of the cold weather.

Of course, everyone should eat a healthy diet with plenty of Vitamin D rich foods like fatty fish, beef liver, fish liver oils and UV-irradiated mushrooms (exposure to light causes the mushrooms to produce Vitamin D2 just like you're skin). Many foods in the US are fortified with Vitamin D, such as breads, cereals, and milk. This is to prevent Vitamin D deficiency illnesses, like rickets, osteomalacia and osteoporosis (because beef liver and fatty fish aren't at the top of anyones' favorite food list!). If you eat a gluten free diet like I do, you may notice that most gluten free cereal and bread products are not fortified with extra vitamins. Similarly, if you are lactose intolerant like I am, you may not be getting any Vitamin D fortified milk in your diet. Some soy and rice milk products have the same vitamins added as milk does, but you should read labels carefully to be sure. Trader Joe's "Rice Drink" is fortified just like regular milk, if not better. Silk makes several forms of soy milk, some of which are vitamin fortified just like regular milk.

Vitamin B-12
My Vitamin B-12 levels were not low, but my family doctor suggested that I try a B-12 injection anyway, just to see if it made me feel any better. She said lots of her patients feel more energy after a B-12 shot. My grandma had severe emphysema and was very anemic towards the end of her life, and she always felt better after a B-12 shot, so I decided to give it a try. Sure enough, I feel much better for about one week after I get the shot. Yeah, the shot hurts a little bit because it's given intra-muscularly, and my shoulder feels a little sore for the next day or two, but it's totally worth it. It gives me some energy, and I seem to have less vertigo and dizziness, less shaking/adrenaline rush feelings and a little bit better breathing after I get the shot. I was getting it once a month and then feeling like crud for about three weeks in between shots, until another doctor told me I could get the shots once a week. We're waiting to see if my insurance will cover weekly shots, but even if they don't I may pay for it on my own because it makes me feel so good.

Vitamin B-12 is one of the family of B vitamins that are essential to good health. B vitamins are needed for many body functions, but B-12 may be the most important, since it is needed in every cell in the body. B-12 plays a key role in the functioning of your brain and your nervous system. B-12 also plays a role in red-blood cell production. If you have any neurological problems, if you have the hypovolemic (low blood volume) type of POTS, if you have any internal bleeding, such as from a stomach ulcer, or if you are suffering with fatigue and low energy levels, you should ask your doctor about trying a B-12 injection.

Vitamin B-12 is found naturally in animal products like seafood, liver, beef, egg yolks and cheese.  Vegans have to take extra precautions to avoid a B-12 deficiency, but this can easily be done by ensuring you consume enough B-12 fortified vitamin supplements, soy products, plant milks and cereals.  The vegan sources of supplemental B-12 use B-12 produced by bacteria, not animals.

Iron also plays many roles in the body, but the most important is probably iron's role in the blood. Iron is an essential part of hemoglobin, the red blood cell protein that binds with oxygen to carry the oxygen to cells throughout your body.

Iron is absorbed by our gut from the foods we eat.  There are two types of iron containing foods - those from animal sources, like beef, liver, turkey, etc. and those from non-animal sources, like black beans, lentils, kidney beans, dark leafy greens and raisins.  Your body needs Vitamin C in order to absorb the iron from the non-animal sources.  Some processed cereal and bread products are enriched with iron as well.

If you have chronic blood loss, which can happen from hemorrhoids, a heavy menstrual cycle, endometriosis, a bleeding ulcer or any other internal source of bleeding, you can develop anaemia (low red blood cell count) over time. There are many different forms of anaemia, and a hematologist would be the best type of doctor to see for the proper diagnosis and treatment of any blood related condition.

Sometimes your iron levels have to become very low before you even develop the symptoms of anemia. Iron deficiency anaemia has many of the same symptoms as POTS does.
-extreme fatigue
-Pale skin
-Shortness of breath
-Fast heartbeat
-Dizziness or lightheadedness
-Cold hands and feet
-An uncomfortable tingling or crawling feeling in your legs (restless legs syndrome)
-Inflammation or soreness of your tongue
-Brittle nails
-Unusual cravings for non-nutritive substances, such as ice, dirt or starch (this is called "pica" cravings)
-Poor appetite, especially in infants and children with iron deficiency anemia

POTS researchers have done blood volume tests on POTS patients using a Daxor testing machine and a tiny amount of radioactive dye, Iodine-131 (an interesting side note: I-131 happens to be one of the radioactive substances escaping from the Fukushima Nuclear Power Plant in Japan and is tainting Tokyo's drinking water). This Daxor test can precisely measure the total volume of blood, the total red blood cell volume of the blood and the total plasma (clear) volume of the blood. The found that both the red blood cell and plasma part of the blood were equally low in POTS patients. The Flourinef, high fluid intake and high salt intake that most POTSies are prescribed is meant to address the low plasma levels. However, even if your plasma levels are normal, if you have low red blood cell volume, you're body will not be able to deliver oxygen to your cells efficiently, which can lead to fatigue, exercise intolerance, chest pains and shortness of breath. If you have POTS, especially the hypovolemic type of POTS, then you probably have all of these symptoms.

Some POTS experts have used erythropoietin, sold under the brand names Procrit or Epogen in the US, to treat POTS patients with low blood volume. Erythropoietin is a hormone needed by the body to produce new red blood cells from your bone marrow. Taking these drugs will increase red blood cells production from the bone marrow, which should increase blood volume. However, these drugs can cause very dangerous side effects and complications, like blood clots. They are also very expensive and your insurance company may make you jump through hoops before they agree to pay for it for POTS. It is usually used in cancer patients who have developed severe anemia after chemotherapy treatments. However, if you have low iron levels, correcting your low iron may be an easier and safer way to start treating your hypovolemic POTS that erythropoietin drugs.

There are a number of different tests your doctor can run to check the iron levels and your bodies ability to produce red blood cells. If your doctor finds that you have low low iron levels, he/she may recommend and IV infusion or an injection of iron. I purchased an iron supplement from the Vitamin Shoppe, but my doctor told me to throw it away because he didn't think it would help, especially because we suspect my iron deficiency is due, in part to a malabsorption problem. Malabsorption just means that my gastrointestinal tract is just not absorbing nutrients as efficiently as it should from the food I am eating. I am already eating such a healthy diet, with lots of iron containing foods, so my doctor decided that eating more iron wouldn't be enough to help me, since my levels were so low. He also said that many iron pills cause gastrointestinal upset, like diarrhea, cramping and constipation, which could throw my already sensitive tummy off track from the slow progress I have been making in getting it back to normal.

You may not see results right away when you start treating your low iron levels. Your body can only process about 100 mg of iron per day, so it may take several IV infusions of a period of months to get your levels back to normal, and possibly longer if you use vitamin supplements. A friend of mine who had cancer treatment related anemia said she usually felt sick to her stomach for a few days after an iron IV infusion, but then she was back to normal, and eventually regained her energy levels once her iron was at a healthy level - so she said it was worth it to feel a little sicker in order to get healthy in the long run.

After I've had a few of these iron IV infusions, I will post how it went.

Mar 16, 2011

POTS Medications-Does Anything Help?

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 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.

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.

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.

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.

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.

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?

Mar 12, 2011

Deconditioning and POTS


Another part of POTS that we POTSies sometimes don't want to admit is that if you've been stuck in bed with a serious illness for any length of time (whatever the cause), your body will become deconditioned and deconditioning causes POTS like symptoms even in super healthy people.

For example, NASA has done extensive deconditioning research on astronauts, who are in top physical form when they blast off from earth.  After even a week or so in space, their bodies become deconditioned and when they land back on earth, they have symptoms just like POTS - tachycardia, fainting, erratic blood pressure, low blood volume, loss of muscle tone, loss of bone density, etc.  Many astronauts have to be carried out of the space shuttle laying down on a stretcher, which is why you never see pictures of the crew coming home - just walking to board the shuttle when they launch.  After a 3-4 months in space, it takes about 2-3 years for astronauts to regain their bone density and they lose about 22% of the blood volume.  Some astronauts have to take a common POTS drug - Midodrine - before returning to the earth's gravity. Without the Midorine, which increases the astronauts blood pressure, the astronauts would feel the symptoms of their low blood volume and low blood pressure immediately upon entering back into the earth's gravitational field, and they would not be able to land the shuttle - they'd probably pass out just like us POTSies.  So if a super healthy astronaut can get his or her butt whooped by POTS like symptoms after a few weeks of deconditioning in space, imagine what a few months or years of deconditioning does to us regular folks, some of whom have other health problems to begin with.  To combat the orthostatic and blood volume issues the astronauts experience when they return home form space, they do special exercises meant to build up their bone density, cardiac efficiency and blood volume.  In theory, these exercises should help some POTSies, especially those who are deconditioned and those suffering with low blood volume (hypovolemic POTS).  

One really important thing to note is that POTS related deconditioning is not caused by laziness or a lack of motivation.  It's caused by physiological changes that occur in your body.  In fact, most POTSies are young women who tend to be thin or a healthy weight, and many were stellar athletes or dancers just before becoming sick.  

In my case, I have always been a tomboy and into sports and outdoor activities.  Surfing, mountain biking, cross country skiing, kayaking, gardening - these things were part of my weekly routine.  I was snowboarding in VT for seven days in a row before my POTS symptoms started, so I know the initial trigger wasn't deconditioning in my case, but after a year of being sick and not being able to exercise much (or even walk or stand up sometimes), I am definitely out of shape and thus deconditioing is only making my POTS symptoms worse.  It's a vicious cycle and it's very hard to break out of it.  

So how do you overcome the effects of deconditioning?  Get moving!  There is a team of doctors from Texas who, taking a cue from NASA's experience, believe that some POTS patients have reduced cardiac output, basically caused by a shrinkage of their heart due to deconditioning.  Check out their recent study, which showed that a majority of their study participants did see noticeable improvements after 4 months of a carefully designed cardio/weight lifting exercise program.  You're doctor can get in touch with the Texas doctors to find out about the exercise protocol they developed.  They won't give it to patients directly because it needs to be supervised by your local doctor.  Have your doctor tell them you are interested in learning more about their POTS Registry and the POTS exercise protocol they have developed.

In addition to the Texas study, doctors have long known that thin, young women tend to be easily susceptible to deconditioning, and if you've been paying attention to all these POTS websites, you see that most POTSies are thin, young women.  That's not to say all POTSies have deconditioning or that a vigorous cardio workout is the cure for all POTSies, but it is something all of us should think about.

In terms of needing more exercise, I am right there with you.  After I was put on strict bed rest by a well intentioned but misguided doctor in July 2009, I literally saw my leg muscles disappear before my eyes.  I looked like big bird with those awful bird legs.  That's the worst I felt in the 14 months I've been sick and it was when I was the most deconditioned. 

I can't do a great cardio work out like I want to, but once we were able to get my medications and IV saline therapy to the optimal doses, I was able to start walking around the house a little.  I do laps during TV commercial breaks.  I walk from the couch to the kitchen, to the dining room, to the den and back to the couch.  By the time I am back at the couch, my show is back on and I am totally out of breath with my heart racing.  Just as soon as my body has recovered from the last lap, it's time for another commercial and another lap.  After doing this everyday for a few weeks, I am able to do two or three laps now.  Slow progress is better than no progress!  thighmaster).  I stretch all day long and try to do a few standing yoga moves at least once a day (warrior pose is my favorite).  I leave my yoga mat and weights out all the time so I don't forget.  I wear 2lb. leg weights on each leg every few days (they make me so exhausted).

I am doing this with the hope that I will be accepted into the Texas POTS exercise protocol program.  I heard that it involves reclined or sitting exercises like rowing machines and recumbent bicycles, as well as floor exercises and swimming.  My doctor and I are filling out the forms and waiting to hear back from the Texas team.  If I am accepted, I will start out doing floor/reclined exercises for a few months, then transition into upright exercises.  I am cautiously optimistic about this and praying that it helps me feel better.