Wednesday, January 30, 2019

Mast Cell Activation Syndrome (MCAS) and ME/CFS

While Mast Cell Activation Disease (MCAD) is a well-known but rare condition, doctors have only just recently discovered that a related condition, Mast Cell Activation Syndrome (MCAS) is actually very common and behind many unexplained medical problems. Since mast cells are a part of the immune system (involved in allergic reactions), doctors and other medical professionals are discovering that many patients with immune disorders, like ME/CFS, or tick infections, which can affect the immune system, also have MCAS. Any kind of unexplained or new allergic-type reactions, rashes, pains, or weird symptoms that don't seem to fit anything else often point to MCAS.

The good news is that MCAS is often easily treated with readily available over-the-counter (OTC) medications and supplements. First-line treatments usually include OTC antihistamines and acid blockers, as well as other allergy treatments. Testing for MCAS is tricky because changes in the blood are often transient, so a single blood test may not catch them, but since the initial treatments are inexpensive and accessible, it can be worthwhile to try treating MCAS if your symptoms fit. Many of the parents in our Parents' support group have reported that their kids with ME/CFS, EDS, tick infections, and related conditions have responded well and improved--some dramatically--with some simple MCAS treatments.

Below is a bit more detail on MCAS, its diagnosis, and its treatment. Most of what I've learned about it has been from the book Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity by Dr. Lawrence B. Afrin, M.D., one of the main doctors responsible for identifying MCAS. His book contains many case studies of widely varying patients, including some information on diagnosis and treatment options, with a lengthy glossary (view the book on Amazon at the link). I also learned about MCAS from a few websites and from other patients and medical professionals.

Our Story
Our registered dietician (who also has an MS in biochemistry and is brilliant about ME/CFS and related conditions) mentioned the possibility of MCAS to me several years ago, but I didn't pay much attention. Then, I began to hear other patients talking about it, with more and more people diagnosed with MCAS and improving with treatment for it. Finally, when both our ME/CFS specialist and our Lyme specialist mentioned it to us within a month's time, I decided it was time to follow-up on it.

I have had annoying-level year-round allergies since we moved to Delaware in 1990--mainly to molds and dust--and developed a dairy intolerance when I got ME/CFS (as do 30% of ME/CFS patients). My older son, who also has ME/CFS plus 3 tick infections, also developed a dairy intolerance with ME/CFS but otherwise has only mild allergies and seldom even needs to take OTC antihistamines...which is why I didn't pay attention the first few times I heard about MCAS. He and his brother (who is recovered from ME/CFS but has fairly severe allergies) had both started reacting to certain fruits, vegetables, and nuts,  in the past few years (a condition known as Oral Allergy Syndrome), but again, for our older son, it's been mild.

Then, last spring, he had a random, unexplained anaphylactic reaction one day after playing soccer. He does carry Epi-Pens due to a bee sting allergy, but he definitely had not been stung that day. When he felt his throat start to close up, he walked to the nearby Urgent Care clinic (luckily, very close by), and phoned my husband, who rushed over there. Luckily, with the quick response and some Bendaryl (an OTC antihistamine) and a dose of steroids, he responded and didn't need the Epi-Pens, though he was wiped out for days afterward. But we still couldn't explain why it had happened.

A couple of weeks later, we were at a check-up with his Lyme doctor and just mentioned the weird, still-unexplained anaphylactic reaction. Our Lyme doctor said that it sounded like a mast cell problem, and finally, the light bulb went on for me! I started remembering all the disparate things I'd heard or read about MCAS and realized his strange reaction was a major sign. We took our ME/CFS specialist up on her offer to test us both for MCAS, and she ran a range of tests (see below, under diagnosis). Nothing showed up abnormal for me, but one test was way out of range for our son, so we began trying treatments. There hasn't been a huge change, but he did see a small improvement in his symptoms and how he felt overall. More importantly, he hasn't had another anaphylactic reaction since then, though he does still have a mild mouth-itching reaction to certain fruits. I didn't expect any major changes for me and didn't see any, though it has helped to better control my allergies, which are ever-present.

Diagnosis of MCAS is challenging. There are some blood tests that can be run, but none of them is foolproof: you can have perfectly "normal" results and still have MCAS. It is a condition that is mostly diagnosed clinically (that is, through symptoms, history, and physical exam), though lab tests might pick it up (very much like Lyme disease).

These lab tests (all for blood unless otherwise noted) might be helpful and can be requested to help determine if MCAS is present:

  • Tryptase
  • Chromogranin A
  • Histamine (plasma)
  • Immunoglobulin E (IgE)
  • IgE AB
  • Arginine Vasopressin
  • Osmolality (serum)
  • Osmolality (urine)
As I mentioned in the introduction, there are many problems with these tests. The tryptase test, for instance, has an inherent impracticality. It is most accurate when the blood sample is taken within 4 hours of the onset of a flare-up of symptoms ... but few patients are able to get to a lab and get it tested in that timeframe. Other MCAS/MCAD testing requires a sample that is kept chilled, which is also difficult to ensure once it is shipped off to a lab somewhere.

For us, my tests were all normal, as were most of my son's, but his IgE levels were more than 6 times higher than the normal range. IgE are the antibodies produced by your immune system when you've been exposed to an allergen, so this was an unusual result for someone who rarely has typical allergy symptoms.

There are more accurate and more complicated tests for MCAD and MCAS, but they are typically beyond the knowledge of most doctors or laboratories to request and/or correctly run.

Since the testing doesn't always (or even often) pick up MCAS, doctors must rely mainly on symptoms. Classic signs of MCAS include:
  • Typical allergic symptoms, like wheezing, congestion, flushing, rashes, throat swelling, or anaphylaxis.
  • Symptoms that are unexplained by the patient's existing diagnoses.
  • Any odd, strange, bizarre, weird, or mysterious symptoms. Dr. Afrin even suggests looking for these kinds of words in a patient's medical file: have previous doctors used these kinds of descriptors for unexplained symptoms?
This is where the title of Dr. Afrin's book comes from. He explains that Occam's Razor tells us that a multitude of problems (especially unusual problems) in a single patient is far more likely to be due to a single root cause than to multiple causes.

So, if you and your doctor suspect MCAS, based on symptoms and/or testing, the easiest way to confirm is not with more complex testing but to try some simple treatments.

First-line treatments for MCAS are usually various types of histamine blockers. There are four types of histamine receptors in the body:
  • H1 receptors, which cause much of what we typically think of as allergy symptoms and help to control our internal clocks.
  • H2 receptors are mainly located in the gastrointestinal tract, as well as the heart, uterus, and vascular smooth muscles.
  • H3 receptors are present throughout the nervous system and especially in the Central Nervous System.
  • H4 receptors have only been recently discovered and trigger the release of white blood cells from bone marrow.
So, accordingly, there are different types of histamine blockers you can try that might help with MCAS (note that I am using generic names here, with U.S. brand names in ( )--you can find these products simply by clicking the links to the generic names--generics are identical to the brand names but cheaper):
  • H1 blockers are typically sold as antihistamines, including all of the over-the-counter products, like the non-drowsy choices: loratadine (Claritin), fexofenadine hydrochloride (Allegra), cetirizine hydrochloride (Zyrtec), and levocetirizine dihydrochloride (Zyzal), a newer one. Diphenhydramine (Benadryl) is an older antihistamine that is an effective H1 blocker but can cause drowsiness (and contrary to popular belief and a lot of advertising, it is not a good choice as a regular sleep aid; see article on Correcting Sleep Dysfunction in ME/CFS). You can easily buy these online (see links) or in any drugstore without a prescription, and most are available as generics (so much less expensive). Note that most of them that are solid pills contain lactose as a filler (read the label for inactive ingredients to check); you can get lactose-free versions by buying gel caps, where available (click any of the links above and search for the name plus gel caps). That's what we do: we buy generic cetirizine (Zyrtec) gel caps on Amazon. Dr. Afrin sometimes uses twice-daily dosing, which is double the normal the dose. If one doesn't work for you, try another - everyone responds differently.
  • H2 blockers are usually sold over-the-counter as acid blockers, with brand names like famotidine (Pepcid AC), cimetadine (Tagamet) and others (note that ranitidine (Zantac) was recalled last year). Dr. Afrin recommends using the maximum strength products and beginning with once daily, but you can increase to twice daily.
  • Ketotifen is an anti-inflammatory that is also an H1 blocker. It is not currently sold in the US commercially, but you can easily get it through a compounding pharmacy.
  • Some drugs used for other purposes also have antihistamine effects, including doxepin, all tricyclic antidepressants (which are often used in low doses to correct sleep dysfunction in ME/CFS), certain anti-nausea drugs, and the anti-psychotic quetiapine.
  • Cromolyn has mast cell stabilizing activity and is available as a nasal spray, eye drop, or in liquid form for oral use. My son tried the oral liquid but couldn;t tolerate it, but I know it works well for some people.
  • Quecertin is an herbal supplement with antihistamine effects, which is naturally occurring in some fruits and vegetables and tea. We often use this brand, and our functional medicine specialist recommends Histaquel from Researched Nutritionals, which we buy directly from them. We've found Histaquel to be very effective.

Dr. Afrin's book covers other treatments, but these listed above are the most commonly used and readily available. He does sometimes use simple aspirin to treat MCAS (as one of several treatments), but it does have some potentially serious side effects when used regularly.

From this list, my son and I both take generic Zyrtec liquid gel caps (double dose for him) and Quecertin (2 pills twice a day) daily, as well as an acid blocker/H2 blocker. We started with Zantac and switched to  Pepcid-AC when Zantac was recalled. Note that there is no way to predict which particular medication in a category will work best for each individual. Everyone is different. So, some patients will respond well to Allegra, while other will have better success with Claritin or Zyrtec (and same with the H2 blockers and other categories) - it's a matter of trial and error. My son also tried ketotifen, 1mg daily, compounded, though he didn't see any change from that. He tried the liquid Cromolyn, but it gave him diarrhea, though I have heard that it works well for other patients.

As for results, my son reports that his food allergy symptoms (itchy mouth and throat with certain foods) have improved, and he hasn't had another anaphylactic reaction. My allergy symptoms are definitely better controlled now; I already took Zyrtec daily but adding Quecertin and famotidine has helped.

The bottom line with treating MCAS is that it comes down to trial and error, which means plenty of patience and persistence. You have to keep trying to find the combination of treatments that work best for you, and even within a single category, what works for you may not work as well for someone else.

Believe it or not, that's a brief summary! For more detailed information or to learn more about the science, check out the Mast Cell Action website or Dr. Afrin's book. MCAS is a complicated topic but one that is an exciting new development for many with immune disorders, including ME/CFS, and potentially a whole new avenue of treatments to try. We do think treating MCAS is helping our son, and I think it has helped to reduce my own allergy symptoms a bit more. I know of other patients who have improved dramatically with treatment for MCAS, so it is definitely worth looking into. Now, whenever someone tells me that they or their child has "a weird rash" or some other unexplained symptom, I always point them toward MCAS.

Have you looked into MCAS yet or tried any treatments for it? What has your experience been?

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

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Tuesday, January 29, 2019

TV Tuesday: The Rookie

We don't watch a lot of police dramas, but when we saw that Nathan Fillion was going to be in a new one called The Rookie this fall, we gave it a try. We loved Fillion in Castle - and of course, also in Firefly - and we weren't disappointed in his latest role. The Rookie is a cop show, yes, but with plenty of drama and humor as well as action.

Fillion plays John Nolan, a rookie cop who is 40 years old. His life recently fell apart when he and his longtime wife divorced after their son went to college, and John decided to do something completely different from the construction work he'd done all his career. He moved to LA, graduated from the Police Academy, and is now an official rookie (or "boot" as the experienced cops call them) with the LAPD. His fellow rookies are Lucy Chen, played by Melissa O'Neil (whom we enjoyed in Dark Matter), and Jackson West, played by Titus Makin, Jr, whose father is in charge of Internal Affairs. In each episode, each rookie is teamed up with an experienced officer, and the two of them go out on patrol and encounter a wide variety of situations, from motor vehicle violations to domestic situations to gun-filled drug deals. Sergeant Wade Grey, played by Richard T. Jones, oversees the patrol officers, and Captain Zoe Anderson, played by Mercedes Mason, is in charge of the whole department. No one else knows it (yet), but John and Lucy have been seeing each other.

This is not your typical gritty police drama. Though the officers often run into challenging situations and danger, there is a lightness and sense of humor that runs throughout the show and makes it a whole lot of fun. That's not to say it doesn't sometimes delve into serious issues - like one officer's wife who used to be in Vice and is now a drug addict on the streets or when John is involved in the shooting of a civilian - but it always tackles these difficult topics with warmth and humanity. If you've seen Fillion in anything else, you know he plays the goofy, wise-cracking guy often (and well), and you see some of that here, too, though with a serious desire to become a good cop and a layer of sensitivity underneath, especially when it comes to Lucy or his son. There are plenty of jokes about the 40-year old rookie, but it's not a one-joke show - there is gentle humor woven throughout. The combination of police action, interpersonal drama, and humor is just right, and we have been loving the show since its premier in the fall. In fact, our 24-year old son was home sick last week and looking for something to watch, so I suggested The Rookie, and he binged all of the episodes!

The Rookie is currently airing on ABC at 10 pm Eastern time, and I know that all 11 of its episodes so far, back to episode 1 (#12 airs tonight) are available On Demand because my son just watched them all last week! They are all also available for free on the ABC website. You can also purchase The Rookie on Amazon for $1.99 an episode or $34.99 for the first season (looks like it will be 20 episodes total).

Thursday, January 24, 2019

Challenges in Treating Orthostatic Intolerance

Part 1 of this series covered Challenges in Diagnosing Orthostatic Intolerance. I apologize for the long delay in writing this second part on Challenges in Treating OI -  a bad crash last fall left me with only minimal writing energy for several months...but here it is now!

If you missed the first part or are new to the topic of Orthostatic Intolerance (OI), go back and read Part 1 and/or my overview post on Orthostatic Intolerance and ME/CFS. The bottom line is that if you have ME/CFS (and possibly if you have fibro, tick infections, or MCAS), then you do have some form of OI, where your body can not hold blood pressure and/or heart rate steady while upright. The good news is that treating OI can improve all symptoms--often dramatically--and treatments are quite cheap and readily available all over the world. Treating OI is what got my two young sons back to school full-time and even playing soccer again, and it is a big part of what allows me to be active again - I now walk and exercise almost daily and can walk for up to about 90 minutes (on a good day) without crashing afterwards!

So, step 1 is to diagnose OI - for details on that, see my ProHealth article, Diagnosing Orthostatic Intolerance, and that previous post on Challenges in Diagnosing Orthostatic Intolerance. Once you have the diagnosis, then you can start trying treatments! My ProHealth article on Treating Orthostatic Intolerance outlines some of the most common treatments that usually help people with OI. However, as with diagnosis, there are some challenges to treatment, and too many people give up too easily the first time they hit a challenge.

Why Treat OI?
Why bother in the first place? Because, though most of us are unaware of it, OI is behind many of the symptoms we think of as ME/CFS - it contributes greatly to fatigue, pain, and brain fog. Most importantly, OI is a big part of exercise intolerance. Treat the OI, and you will greatly improve your ability to tolerate exertion without crashing! That is the piece that was life-changing for my sons and I and so many other people around the world. 

The tips below come from LOTS of experience - both our own and that of hundreds of other patients that we have helped get the treatments they need. Keep these things in mind as you embark on finding your own effective treatments for OI. You'll be glad you did!

Salt and Fluids Are Only the First Step
Many doctors recommend extra salt and fluids after diagnosing a patient with some type(s) of OI, and that is certainly very helpful, but it is only the first step in treating OI. Part of the reason behind why OI happens in ME/CFS and related conditions is low blood volume caused by endocrine dysfunction, and extra salt and fluids can help to increase your blood volume...but only by a small amount. Ingesting salt and fluids only has a minimal impact on blood volume, so while it's necessary, there are still hormonal abnormalities that prevent our bodies from holding onto those fluids, which is why we need extra help. For starters, extra salt and fluids will help, though you need more than just a bit of salty foods. Try these approaches:
  • Add extra salt to food (use sea salt or Himalayan Pink Salt) and eat salty snacks, like nuts.
  • Drink lots and lots of water, herbal tea, and other non-caffeinated, non-alcoholic drinks.
  • Take buffered salt tablets after meals - we like Thermotabs brand. SaltStick is another popular option. Buffered means they have the right proportion of sodium and potassium for your body. They can make some people nauseous, so taking them on a full stomach helps.
  • Drink 2-4 liters of electrolyte drinks daily. We started with things like Gatorade but then had to reduce sugar in our diets (you can get Gatorade Zero, which has no sugar, but it still contains dyes). There are all kinds of drink mixes and tablets in all kinds of flavors to add to your water, so it can take some experimentation to find which ones you prefer. We like GU Brew tablets because they have no sugar, no sorbitol (which can upset the stomach), and no artificial colors or flavors. Nuun tablets are similar and contain a very small amount of sugar - they seem to have removed the sorbitol recently also. There are lots of other options - powders sweetened with various things and unflavored salt water drops, like Elete, that you can add to any drink. You can even just add some sea salt to water on your own with a squeeze of lemon or lime. Personally, I'm not one for sweet-tasting drinks, so I like V-8 juice (just don't get the low-sodium version) when I need an extra salt boost - loads of sodium, plenty of potassium, no sugar, and extra veggies!
Again, that's just the first step - you may see some improvement just from adding salt and water, but much more improvement is possible. Some people try weekly saline IVs (my son did for 2 years), so you are pumping up blood volume directly instead of going through the stomach. Those can work well, but their effects are very temporary - your body quickly comes back to its own "normal" state within a day or two - and it's an invasive procedure.

Know Which Type(s) of OI You Are Treating
Refer back to the diagnosis resources I linked to in the opening paragraphs. It's important to know which of many types of OI you have because that will guide treatment. The most common forms of OI in ME/CFS patients are POTS, where the heart rate (HR) goes up while standing, and NMH, where the BP drops while upright; however, some people have rarer forms of OI, where the HR goes down or the BP goes up or HR and/or BP jump all over the place. OI is just an umbrella term meaning that your body can't hold HR and/or BP steady while upright, so find out which types you have. As I explain in the post on Challenges in Diagnosing Orthostatic Intolerance, some doctors tend to focus solely on POTS (it seems to be the best-known OI condition), so be sure to ask for the raw data and details on exactly what your HR and BP did during the test. Your treatment approach may be different if you have "just" POTS or both POTS and NMH or some other form of OI entirely.

Tips for Using Florinef (fludrocortisone)
One treatment option that can work for all types of OI is Florinef. Its sole effect is to help the body hold onto more salt and fluids, so it can help to increase blood volume, which will help with all types of OI. A few facts about Florinef:
  • It often works for kids and only rarely works for adults. Experts aren't sure why - it may have to do with the larger blood volume in adults. That said, if it works for a kid, it tends to keep working even after he becomes an adult - that's been the case for my son. So, if you are treating a kid, definitely give Florinef a try. It's what got my sons both back to school full-time. And, if you are an adult, it is still worth a try because it does work for some adults; just don't get discouraged if it doesn't work for you after increasing the dose  - move onto the next thing.
  • Florinef Does Not Act As a Steroid and Does Not Suppress the Immune System. This is a very common misconception among doctors, and even the Physician's Desk Reference (PDR) is misleading on this topic. Here are the facts and an explanation, from the top pediatric expert in the world on ME/CFS and OI, Dr. Peter Rowe of Johns Hopkins:
"Some basic physiology might be helpful to people. Florinef (fludrocortisone) is a mineralocorticoid that helps primarily with salt re-absorption in the kidney, hence the mineralo-corticoid label. It has some gluco-corticoid properties, meaning that it helps in stress responses and glucose metabolism like cortisol does. 

Florinef is quite potent mg for mg in comparison to cortisol. But, the glucocorticoid effect of fludrocortisone at doses commonly used for treating orthostatic intolerance (0.1 mg daily) would be equivalent to just 1.5 mg of cortisol per day. This is a very small glucocorticoid effect, especially when compared to an adolescent's maintenance daily cortisol needs of 12-24 mg per day. 

One confusion is that the Physician's Drug Reference book (PDR) lumps fludrocortisone under the glucocorticoid class, mainly because fludrocortisone does have some glucocorticoid properties. Doing so confuses people, because there is no mention about how little glucocorticoid effect it might have when given in the recommended doses. The PDR then incorrectly suggests that Florinef can suppress the immune system. We know this can happen with cortisol and prednisone, and many people stay away from it because of the other widely known effects of glucocorticoids in high doses (so-called Cushingoid weight gain, acne, mood changes, immune suppression, yeast infections). But in about two decades of using Florinef, I have never seen any evidence of immune suppression attributable to the drug, nor has anyone developed unusual infections while being treated with it. It does not suppress cortisol levels. It can increase BP, which is part of why we use it, but this is a mineralo-corticoid effect, not a gluco-corticoid effect.  

Similarly, Florinef has no anabolic (muscle building) steroid properties as might be seen among those who want to gain an unfair advantage in sports. 

It isn't always the right medication for everyone, but it definitely can treat a subset of those with orthostatic intolerance."
Armed with those facts, here are some tips for trying Florinef:
  • You need lots of salt and fluids. Since Florinef works by helping the body hold onto more salt and fluids, it can only do its job if plenty of them are available in the body. So, first increase salt and fluids, and then start Florinef (and keep up the salt and fluids).
  • Start low and gradually increase dose. Start with just a half tablet (0.05 mg) per day. After a week, if there are no ill effects, increase dose by another half a tablet.
  • You might not see any effects until you get to your effective dose. Everyone is different. 0.15 mg (one and a half tablets) a day was enough for our younger son, and on that dose, he was symptom-free about 90% of the time (his ME/CFS was milder than ours). For our older son, though, we patiently worked the dose up to 0.15 mg a day and saw absolutely no effect. We were ready to give up, but our doctor (the wonderful, now-retired Dr. David Bell) told us to stick with it and go up again, to 0.2 mg a day. Wow! It was like someone had flipped a switch! Our son suddenly felt better, had energy, could think more clearly, and was up off the couch, wanting to go to school and play with his friends. It was like a miracle ... and we almost gave up befiore getting to it. Later, as he grew, that dose no longer seemed effective, and we again increased up to 0.3 mg (3 tablets) a day, which did the trick. I have heard of doses as high as 0.4 mg a day, though most people (particularly kids) do well at 0.2 mg a day.
  • Florinef can deplete potassium. Since Florinef helps the body hold onto more sodium, it can deplete potassium in the body. For this reason, Dr. Rowe recommends that anyone on Florinef also supplement with potassium chloride (KCl), at a dose of 10 meq KCl for every 0.1 mg of Florinef. So, with 0.3 mg of Florinef daily, my older son takes 30 meq of KCl. Note that this potassium can only be obtained with a prescription; you can not get high enough doses with over-the-counter supplements.
Tips for Trying Beta Blockers
Beta blockers work by blocking certain hormones, like adrenaline (which ones depend on which beta blocker you are taking) that can cause HR and BP to jump around. They will immediately reduce a high HR and are commonly used to treat high blood pressure, but I have found that a low dose beta blocker also helped to stabilize my BP and stop it from dropping when I am upright, so don't discount them if your BP is low or you have NMH. I wrote an entire blog post with information on and tips for finding the right beta blocker, so if you are trying them, please refer to that post for more detailed information.

Here are some quick highlights:
  • Start with the lowest dose available. This is SO important because doctors often prescribe too high a dose, especially for ME/CFS patients. Too much beta blocker actually causes fatigue, and we certainly don't need that, right? So, start with the smallest dose available of the one you are trying--some patients even cut them in half to start. You can always increase if there is little effect. When I took my first pill of propranolol at the lowest dose available, my HR dropped 30 bpm within an hour! I was stunned...and excited!
  • Avoid short-acting beta blockers. The short-acting ones have to be taken multiple times a day and wear off within 3-6 hours. Each time they wear off, your HR jumps up again. This can actually make your OI worse by introducing these spikes of high HR every time the meds wear off. I started on a short-acting one and found that I felt great while it was working but worse every time it wore off. Plus, I woke up every morning with none in my system and had to lie in bed for an hour waiting for it to kick in before I could get up. Instead, ask your doctor for 24-hour, long-acting type (some, like propranolol, come in both types).
  • Take a long-acting beta blocker at bedtime. This accomplishes two things: it helps to prevent random bouts of tachycardia (high heart rate) during the night that can disrupt your sleep, and you wake up in the morning with it already in your system and working effectively. Switching from short-acting to long-acting was a huge improvement for me--I could wake up and jump out of bed and into the shower like a normal person! (yes, treating OI effectively will allow you to shower without crashing, too).
  • You might not immediately "feel better." I noticed this myself. I was thrilled to see my HR drop to almost-normal levels and my BP stabilize, but I didn't immediately notice an improvement in my symptoms. However, if it is working (i.e. lowering your HR and/or stabilizing your BP), stick with it. I found that the symptom improvements came over time. By reducing OI, beta blockers (and other treatments) will automatically reduce exercise intolerance. With my HR at lower levels and my BP not plunging when I stood up, I could begin--very slowly--to do more and be more active. I began to do simple exercises, like leg lifts and core strengthening, while lying on the ground, carefully and while monitoring my heart rate. I began to walk, a bit more each week, slowly building up my strength and stamina. This is NOT Graded Exercise Therapy (GET) because you have treated the exercise intolerance first before even attempting to exercise. Improved muscle tone further reduces OI, and the improvements build. The positive results increased for me over time, like a domino effect (a positive one, for a change), as I was able to do more and be more active without crashing afterward.
  • If at first you don't succeed, try, try again! There are almost 40 different beta blockers to choose from and some have entirely different mechanisms of action. Just trying one tells you nothing. If you have side effects at the lowest dose or it isn't effective for you even when you increase the dose, then try a different one. Those most commonly used for ME/CFS patients include long-acting propranolol, nadolol, and atenolol, but there are over 3 dozen others to choose from! Even for those in the same class, sometimes a patient will do better on one than another. There are also newer medications like ivabradine that are not technically beta blockers but can be used in similar ways to treat OI.
Patience and Persistence Pay Off!
This is the final thought I want to leave you with. I have lost count of how many times patients have told me "I tried treating OI, but it didn't help," and it turns out they just tried 1 beta blocker (probably at too high a dose) or only a low dose of Florinef. All treatments for OI can require a lot of trial and error to find just the right combination for each person because we are all different. Also, what I have outlined here are just two of many different treatments available for OI - they are the ones most commonly used but not the only options, by far. For more on treatment options, check out my ProHealth article, Treating Orthostatic Intolerance, and Dr. Rowe's summary brochure on OI. Both of these are also excellent for sharing with doctors because they are footnoted with plenty of scientific research to back them up.

Remember, keep trying! It is well worth the effort for the improvement in all symptoms that results.

Have you tried treating OI yet? Do you have any tips to share?

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