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Orthostatic Intolerance and CFS

Posted Feb 04 2010 2:50pm
Orthostatic Intolerance (OI) has been cropping up in a lot of conversations lately - on blogson Facebookthrough e-mailsand in online discussions. I realized thatalthough I mention OI a lot hereI've never really written about it in depth or fully explained our own experiencesso here we go...

OI is a condition that affects over 90% of people with CFIDS - in other wordsalmost all of usthough you may not even be aware of it. OI is actually an umbrella term that includes two separate conditions: Postural Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH)also known as orthostatic hypotension. Both of these conditions exist outside of CFS and are generally well-understood by cardiologists and other medical professionals (though the term OI is used more often specifically to CFS). Some people with CFS just have one or the otherbut many of us (including both of my sons and me) have both.

POTS occurs when standing or sitting upright for too long causes your pulse rate to go way up. NMH occurs when your blood pressure drops while upright. Some people with severe POTS and/or NMH actually faintbut for many of us with CFSthe symptoms are less obvious.

I read about OI during the early years of my own illness and shortly after we realized that Jamie probably had CFS as wellbut I didn't think that either of us had OI (I didn't know at the time how prevalent it is in CFIDS). Neither of us had ever fainted or even felt light-headedso I assumed it didn't affect us. Besidesboth of us had normal blood pressure during routine office exams. I was very wrong.

Jamie and I went to see Dr. David Bellone of the world's top specialists in CFSespecially pediatric CFSin December 2003. During our visithe officially diagnosed Jamie with CFS and confirmed my diagnosis (I'm lucky enough to have a family doctor who recognizes and understands CFS). Thenhe told me about OI. I told him I'd read about it but didn't think it applied to us. He was almost certain it did and asked if he could test Jamie in his office.

I was stunned by the OI test. Although a tilt table test is the formal method for diagnosing both POTS and NMHthey can also be detected in a simple office test. He had Jamie lie down for 10 minutesand a nurse took his resting blood pressure and pulse rate. Then he asked Jamie to stand up suddenly and stand perfectly stillwithout moving at all or even fidgeting. The nurse took Jamie's blood pressure and pulse rate every minute. Within less than 10 minutesJamie's feet turned purplehe complained he was very hot (in western NY in late December!) and started to feel sick. His blood pressure plungedand his heart rate went way up. Dr. Bell ended the test after 10 minutes; he said if they kept goingJamie would probably faint. He also said he wouldn't test me because I'd probably feel too sick to get the two of us homebut he was certain the results would be similar for me.

This is how OI often affects those of us with CFIDS. Some people do feel dizzy or lightheaded (some even faint)but for many of usbeing upright simply makes us sicker; OI worsens all of our CFS symptoms. In factfor many peopleOI is behind most of our worst symptoms.

CFS messes up our immune systemsendocrine systemsand nervous systems. The dysfunction in the autonomic nervous system (the part that regulates basic bodily functions) results in lower than normal blood volume and difficulty regulating our blood pressure and heart rate. Without adequate blood volumeour bodies have difficulty circulating enough blood to our hearts and brainsresulting in many of the symptoms we identify as CFS.

Kids and teens often respond very well to OI treatmentand it can be helpful for adults as well. The main idea is to increase blood volume and/or improve constriction of blood vessels to help circulate blood better. The easiest way to increase blood volume is to ingest HUGE amount of salt and fluids. I can't emphasize this enough! Sodium and fluids are critical for people with CFS (check with your doctor first to be sure you're not one of the rare people with CFS who has high blood pressure). Next time you feel particularly sick or have a racing heartdrink a large glass of V-8 juice (lots of sodium!) or even a glass of salt water (it's not so bad with lime in it). It won't cure youbut it helps a lot. I always drink a big glass of V-8 juice before I go to the store to help keep my blood pressure steady while I'm upright. Just another crazy aspect of CFS - the rest of the world is trying to reduce sodium intake while we need to intentionally try to make ourselves bloat!

Kids and teens often respond very well to a medication called Florinef. Its sole effect is to help the body hold onto more salt and fluids. Florinefin combination with LOTS of salt and fluidshas been like a miracle for my two sons. In 5th and 6th gradesJamie was bedridden over 50% of the time; he had a home tutor for two classes and made it to the other three about 60% of the time. After starting Florinefhe was able to return to school full-time in 7th graderejoin bandand play soccer again. He's been in school full-time ever since. For Craigwhose CFS is much milderFlorinef makes him symptom-free about 90% of the time; he rarely even has post-exertional crashes.

A couple of helpful hints with Florinef: you may not see any effect at all until you get to the right dose for your child. We were ready to give up on it after several months when Dr. Bell advised raising the dose one more time - it was like someone had flipped a switch! AlsoFlorinef only works with large amounts of sodium and fluids. Our boys drink 1-3 liters of Gatorade every day. If one of them skips his Gatorade or doesn't drink enoughhe feels worse the next day. FinallyFlorinef alone isn't enough for some people; Midodrine (a vaso-constrictor) is sometimes added.

UnfortunatelyFlorinef almost always helps kids and teens and rarely works on adultsbut there are other medications that may help adultsincluding beta blockers and SSRIs. Some medications that you may take for other reasons help OI: for examplebirth control pills and SSRIs (a type of anti-depressant) help increase blood volume and decongestant (particularly pseudoephedrine aka Sudafed) is a vaso-constrictor.

Besides ingesting more salt and fluids and trying medicationssome simple adjustments helptoolike moving your legs around when you have to stand still. I may look strange standing in the grocery store line flexing my leg musclesstanding on tiptoesand otherwise fidgetingbut it helps to keep the blood from pooling in my feet.

A wonderful pediatric cardiologist at Johns HopkinsDr. Peter Rowefirst discovered OI in his pediatric CFS patients and pioneered its treatment. There is an excellent article on diagnosing and treating OI written by Dr. Rowe that I highly recommend you read and share with your doctor. The article covers medicationssodium intakeand lifestyle changes. I have an updated version from 2008 that he e-mailed to mebut I don't know how to post the whole thing on the internet (though he gave me permission to - I just haven't had the energy to work on it). If you would like a copyjust e-mail me. There is also an excellent summary of OI on Phoenix Rising that includes most of Dr. Rowe's information. Dr. Rowe is an amazing person - although he's rarely able to take on new patientshe's very willing to work with your own pediatrician or doctor through e-mail and phone calls. He has spent hours on the phone with our sons' pediatricianhelping her to become comfortable treating OI in CFS; she's now becoming our own local expert!

WellI think that covers the main pointsbut I urge you to read Dr. Rowe's full article and/or the Phoenix Rising information. Treating OI can result in great improvements for CFS patients. It's one of the top areas that should be addressedalong with treating sleep dysfunction and underlying infections.

Ironicallyas I was sitting up on the couch typing thisI began to feel hot all over and sickand I realized my own OI was acting up! I finished this post lying downwith my laptop on my lap. Once you understand OI and recognize its symptomsyou have more control over your CFS. OI symptoms are your body's way of telling you that it can't circulate enough blood to the brain and heart and that you need to lie down. I think I'll also drink a V-8 before I go to pick Craig up. Cheers!
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