By K. Kimberly McCleary, President & CEO
On Friday we posted a link to an article in TIME magazine’s Healthland section, “Tip for Insomniacs: Cool Your Head to Fall Asleep,” on our Facebook page.
“When Buysse’s group [at University of Pittsburgh] gave 12 insomniacs a cap to wear that contained circulating water at cool temperatures, they were able to get them to fall asleep almost as easily as people without sleep disorders: using the caps, the insomniacs took about 13 minutes to fall asleep, compared with 16 minutes for the healthy controls, and they slept for 89% of the time they were in bed, which was similar to the amount of time the controls spent asleep.”
The comments posted in response to the article were split between readers who expressed problems with sleep (common in CFS) and readers who found different temperatures to affect their symptoms (also common in CFS). Of those who commented about temperature, most had trouble in warm environments. While many people with CFS are knowledgeable about a condition called “orthostatic intolerance” (OI) that often co-occurs with CFS, every time we post something about OI, we hear from at least one person who wasn’t aware of it, but reports that it explains a lot of the “weird” symptoms they experience. With summer heat on its way, and because treatment of OI through medication, dietary and postural approaches can provide symptom relief, it can be an important part of managing CFS — especially when temperatures rise.
Some Basics
OI is the development of a set of characteristic symptoms while standing or sitting upright. It has been associated with CFS in both adults and children.
The 1986 definition of myalgic encephalomyelitis (M.E.) by Melvin A. Ramsey, M.D., includes “orthostatic tachycardia” as one of the accompanying features. 
The first research study connecting OI and CFS was published in the Lancet in 1995, by Peter Rowe, MD, and associates at Johns Hopkins University, who identified a type of OI called neurally mediated hypotension (NMH) in CFS patients. Since 1995, scientists have learned much more about the broader problem of OI in CFS. It is now thought that many CFS patients (up to 97 percent in some studies) have some form of OI and it seems to be a particular problem in young people with CFS.
Dr. Rowe presented a webinar about OI and its management on Sept. 1, 2010, as part of the Association’s 2010 Webinar Series. The recording and his slides provide an excellent overview. He also shared his clinic’s written material about OI and medications, postural and dietary complements to comprehensive management of OI.
Types of OI
There are many types of OI. When you round up experts who study the autonomic nervous system (as we did at one of our research symposia in the year 2000), they have trouble agreeing on the names and definitions for the various types of OI. (Does that sound familiar?) OI and other forms of dysautonomia are common in other conditions like MS and Parkinson’s; it also occurs in less well-studied conditions like Ehler’s Danlos Syndrome, Marfan syndrome and Shy-Drager Syndrome. So, it’s not unique to or diagnostic of CFS.
At least two specific forms of OI have been linked with CFS in multiple research studies: NMH and postural orthostatic tachycardia syndrome (POTS):
- NMH is a precipitous drop (at least 20-25 mm Hg) in systolic blood pressure when standing. The blood pressure drop is accompanied or preceded by an increase in symptoms.
- POTS is a rapid increase in heart rate (pulse) of more than 30 beats per minute (bpm) from baseline, or to more than 120 bpm total, during the first 10 minutes of standing. It is also known as chronic orthostatic intolerance, or COI.
OI is easier to recognize (and treat) in individuals who have normal or low resting blood pressure. But, it’s also possible for OI to be a problem for people who have high blood pressure. As you can see from the description above, forms of OI describe blood pressure control and heart rate control problems that are provoked by upright posture.
Symptoms of OIThe blood pressure and heart rate changes in NMH and POTS are accompanied by orthostatic symptoms such as lightheadedness, dizziness, nausea, fatigue, tremors, breathing or swallowing difficulties, headache, visual disturbances, sweating and pallor. Many patients develop swollen, bluish legs, providing evidence of blood pooling in the lower part of the body. These symptoms can become worse or be provoked more quickly in warm temperatures or hot indoor environments like saunas. (This last part is what many people who commented on the cooling cap story reported.)
OI should be better understood by primary doctors than it probably is, but if you suspect you might have OI, start there. You may have to see a specialist for a formal evaluation. Expect an extra challenge from your doctor(s) if you haven’t ever fainted; many doctors only associate OI with forms that involve “syncope” or fainting. You can learn more about testing for and the underlying pathophysiology of OI here http://www.cfids.org/about-cfids/orthostatic-intolerance.asp.
(Update: For more specific information about the possible confusion between symptoms of OI and anxiety prompted by a question arising from this post, please see my post, “Is It Anxiety or OI?” http://www.research1st.com/2011/06/21/is-it-anxiety-or-oi/)
OI Treatment
Effective treatment for NMH and POTS in CFS must be individualized. In general, treatment for POTS and NMH helps greatly to alleviate some symptoms, but rarely fully resolves the CFS. For some people, it makes a huge difference.
According to the experts, the first line of treatment should be non-medical interventions, such as increasing fluids and salt, tilting the head of the bed up a few degrees, wearing compression garments (such as support hose, girdles or abdominal binders), and learning to avoid and cope with things that can make OI worse (such as standing in long lines, being in warm environments and eating large, heavy meals). Here are some of the top “tips” for managing OI compiled from various articles and our readers: http://www.cfids.org/cfidslink/2009/070105.asp
If these are not effective, doctors may introduce pharmaceutical treatments such as fludrocortisone (Florinef) to treat low blood volume; and vasoconstrictor medications, including methylphenidate (Ritalin), dextroamphetamine (Dexedrine) and midodrine (ProAmatine) to treat blood pooling (Inderal or Tenormin); and sometimes drugs to block the release or effect of epinephrine and norepinephrine. Selective serotonin reuptake inhibitors (SSRIs) have been used with some success in patients with POTS, and one randomized trial has demonstrated the efficacy of paroxetine (Paxil) for those with recurrent syncope due to NMH.
Figure from Dr. Rowe's webinar presentation
Intravenous saline can help reduce symptoms, especially following HUT or other acute exacerbations of symptoms. Common syncope treatments beta-blockers and clonidine may be less effective in POTS and may reflect different causes for POTS and simple fainting. You can learn more about the medications used to treat OI.
OI and its connection to CFS remains a vigorous area of research and the CFIDS Association has supported several studies looking at different mechanisms for the autonomic nervous system problems that are common in CFS. You can hear Dr. Marvin Medow of New York Medical College describe his Association-funded study on our webinar, Go With the Flow. You can also use the tag cloud (to the right) to search for other articles about orthostatic intolerance here on Research1st.
Like CFS itself, managing OI generally requires a combination of pharmacological and non-pharmacological therapies. Small changes can have positive effects over time, especially if they become routine. Whether it’s a cooling cap or finding the right beta blocker, it may be worth exploring.
K. Kimberly McCleary has served as the Association’s chief staff executive since 1991.
(Updated by the author on June 20, 2011.)
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Please let us know if these kinds of articles summarizing other info sources are helpful to you.
Yes! Thank you for this very helpful information.
This is a great piece Kim. It fits me to a “t”. I have difficulty with heat, especially high humidity. I have the urge to slouch when sitting and generally feel better when prone. I am on of those with hypertension added to the mix which complicates things. I am a transit bus driver and I expect that the bodies “flight or fight” response mechanism is a bit hosed being “on” for 8 hours a day. I am urging my Doc to test to see if I have OI and to check on blood volume before adding or increasing BP meds. Between impaired oxygen transport, OI, and mitochondrial issues, it is no wonder we feel so hosed.
YES, THEY ARE HELPFUL.EVEN THOUGH I HAVE A BS IN MEDICAL TECHNOLOGY AND 12 YRS OF CLINICAL LAB EXPERIENCE….I AM NO LONGER ABLE TO “PROCESS” THE MEDICAL-SPEAK. SO, I APPRECIATE THE “READER’S DIGEST” VERSION OF ANY RESEARCH ARTICLE.
I ESPECIALLY FIND READING FOR COMPREHENSION DIFFICULT ON- LINE.
MY COPING TECHNIQUE OF HIGHLIGHTING AND UNDERLINING AND MARGINE NOTES IS NOT POSSIBLE VIA THIS MEDIUM.
THANK YOU. PAT
Yes, these articles are helpful. First, to inform me, and secondly I can share them with my physician.
Please cont study and giving us information .. So We/I do not feel Alone..Ive just been diagnosed with ” Arthritis Auto Immune” Also cfs ..Fibromyalgia..Anxiety disorder .. Also I Identify with the sweating daily.. And inflammation.. The Heat in my body is horrific.. By standing.. Try to walk to another room..get there and my head / brain is on fire!! Ice melts when applied to neck head abdomen.. All over body.. Feels like I imagine ..a heat stroke.. Or like running a mile very fast pace in heat of day… I was in auto accident 12/11/85.. Both lungs collapsed rupture of spleen left ovary ..internal bleeding .. Now.. Was told excessive scar tissues thru out internal.. I became sick 8/2008.. Strep throat 104.1 fever .. Then all these symptoms appeared.. I pray for a person/specialist of your stature … That I could speak to… I know Im no more special than any one else that are So sick frustrated fearful etc.. After read article ..I need Help?!? All of us do that write so many times.. Pls respond.Til then Praying you’ll contact me..I do not have the words to entice you..however I thank you for your time.
I don’t know what words to use right now so I will just describe what is happening right now. I am crying like a baby as I am typing this. I found this website after hours on the internet completely by accident. Thank you so much for posting your experience. I have almost every symptom you have described and I am just so grateful because for the first time I don’t feel so alone. I don’t feel like a 40yr old woman that is going through menopause. I don’t feel like I am going crazy. I don’t feel like I am mentally “making” myself sick. I have been to 4 neurologist, 2 neurosurgeons, 3 pain management specialists, 3 orthopedist, 2 orthopedic surgeons, 3 chiropractors, 2 rheumatologist, 3 psychologist, 2 psychiatrist….and the list goes on… This website and your post has brought me the first feelings of relief and peace in years. Thank you so much again. Sarah
Yes,I have cfs,and fibromyalgia.As a former nurse I thought about getting up slowly holding onto something stable ,wearing elastic stockings,having some salt.I never thought about cooling my head.Thank you for your dedication and help thru this and any other articles!
Sincerely,
Vicky Dittfield!
Thank you so much for this information!! It is so helpful as I try to find my way in this minefield of ME/CFS/FM. I deeply appreciate people such as you taking the time to put things out there for the help of others!!
Very interesting article. My first experience with POTS was when I was 22, though I wasn’t diagnosed until I was ~40. I was diagnosed with CFIDS at 48, but I think I’ve had it for much longer, and was then diagnosed with NMH. The heat this year has been particularly troublesome. I’ve tried increasing salt and just started taking midodrine last week. I’ve begun using my Pomeranian as a service dog, as he seems to know when my BP is tanking before I do, and gives me suffient warning to sit or take other measures before I know myself. My cardiologist thinks he senses the increase in my heart rate (his dog knows when his heart rate increases after taking his asthma meds). Separately, how can I get info on a cooling cap?
Many people with MS use cooling devices to help with their symptoms and there are several online retailers that carry a variety of products. Here are two: http://www.bodycooling.net/cooling.html and one that sells a cooling “beanie”: http://www.mscooling.com/product/6522. To find other sites, trying googling “cooling clothing + MS”.
Very interesting that your dog can sense the blood pressure drop before you do!
The long time to diagnosis of OI is very common. Many doctors (even specialists — cardiologists and electrophysiologists) think of OI, POTS, NMH, vasovagal syncope, neurocardiogenic syncope, etc. as conditions that occur only in people who faint.
Yes, these meta-analyses are extremely helpful! I’m wondering whether OI is a constant condition, or if it can come and go. I sometimes get symptoms in the situations described (and delayed, as is mentioned), but it’s not consistent at all. Of course I’m not asking for a diagnosis, just whether these symptoms can be sporadic.
From the experts we’ve consulted with, OI can be somewhat transient. Since it is provoked under certain conditions, you might try keeping a symptom diary to help identify patterns that make the symptoms worse or better.
There are some postural behaviors you might find that you find that you do without thinking to help abort an episode — like shifting your weight from one leg to the other while standing; crossing your legs, elevating your feet, and pointing your toes while seated in a chair; bringing your knees up to your chest when in a seated position; bending your knees slightly when riding in an elevator. These are natural compensatory responses to physiological changes that happen without us being aware of them. They could be enough to make your OI symptoms not noticeable at some times, but more present in others when there are two or more “triggers” present — for example if you stand up too quickly after eating a big meal, when your blood is flowing to your abdomen to aid digestion (instead of to your head) and blood pooling has a more noticeable effect than at other times. Hope that helps!
Thank you! I’ll pay more attention to my symptoms and ask my doctor about it.
This is a particularly interesting subject for me, and I’m sure your summaries will continue to be useful.
Thank you for this service.
Suella
Great! Thanks for letting us know.
This summarized article with links has been very helpful to me. I used to take Midrine for headaches from vessel constriction in head. Perhaps it would be good for me to talk with specialists re: re-prescribing since it has started reoccuring again more often. Sometimes hard to tell if migraine or vessel constriction but finding my migraine med doesn’t always help and feels familar to days back when the Midrine worked.
Also, I experience the temperature intolerance and sleep better when cooler temps otherwise when too warm I awake with head pounding and little sleep. I definitely sleep better when cool air (breathing easier as well).
Unfortunately, I also have been experiencing the P.O.T.S. symptoms for, at least, 5+ yrs now but only recently, 2011, found info regarding my symptoms which lead me to personal diagnosis of P.O.T.S. My Doctors, 1st appt & tests, recommended that I wear a Hbpm monitoring system (using Sport watch & chest-band). This has been significant in realization of displaying/feeling symptoms of P.O.T.S.
Definitely interested in getting a cooling cap! Where can these be purchased? So tired of waking up every couple of hours. Would be WONDERFUL to sleep well for a change.
Thank you for your efforts to enable us to educate ourselves thru your articles. Bless you!
Thanks, Marchelle. You mention being helped by midodrine, which is a mainstay for many CFS patients with OI. ProAmatine (midodrine) is a prescription drug used to treat low blood pressure and dizziness in conditions including orthostatic intolerance. Maybe you’re aware that last August the manufacturer, Shire, announced that it would withdraw it from the market effective Sept. 30, 2010. Shire’s decision followed notice from FDA that post-marketing studies done to date were inconclusive to maintain marketing approval for the drug. On Sept. 3, 2010, the FDA reversed its decision and agreed to allow ProAmatine to stay on the market while additional studies are conducted, due in large part to objections raised by patients (including CFS patients and family members) and the Heart Rhythm Society. Read the details in this New York Times story: http://www.nytimes.com/2010/09/04/health/policy/04fda.html?_r=1&partner=rss&emc=rss and the Heart Rhythm Society’s website (http://www.hrsonline.org/Policy/DevicesDrugsFDA/Drugs/FDA_Midodrine.cfm). (From our Oct. 2010 issue of CFIDSLink: http://www.cfids.org/archives/2006-2010-cfidslink/october-2010.asp#you)
Here are some sources for cooling clothing items that may help (no endorsement implied)! Many people with MS use cooling devices to help with their symptoms, so try trying googling “cooling clothing + MS”. Here are two that came up in my search: http://www.bodycooling.net/cooling.html and one that sells a cooling “beanie”: http://www.mscooling.com/product/6522.
Thank you for posting this information. It explains some of the problems that I have been having that are becoming more accute,such as: needing cool air blowing on me almost constantly or I dont feel like I am getting enough oxygen. I cannot tolerate temperatures over 68 degrees especially in my bedroom where I spend my days and night.My feet and legs turn blue or almost blackish when standing in the shower.
Many things are hard for me to understand these days, but this article is written in such a way that I can pull out the main points.
Thanks again, your hard work is much appreciated.
We hear from a lot of people who experience that feeling of not getting enough oxygen, air hunger or dyspnea. Asthma can make OI worse. From Dr. Rowe’s written material: “In particular, preventing activation of even mild asthma and allergies has been important in keeping our patients from developing a worsening of symptoms. In patients with asthma, we usually try to reduce reliance on albuterol and other beta-agonist inhalers, as these medications can mimic the effect of too much epinephrine, and can aggravate NMH in particular.”
Showers are a common problem for people with OI because you’re standing still AND in a warm environment. Research done by the Japanese group that studies CFS actually finds that baths can help blood flow, especially if you use cooler water and can submerge to shoulder level with knees slightly bent and arms at your sides. This posture and the pressure of the water around you improve blood pressure and lymphatic flow, and have some beneficial effects on dilation of vessels in the skin, too.
I have had OI for decades and tried almost everything listed in this article.
The biggest relief I have found is from wearing Compression pants by Under Armour. They were just released last fall, though I had to wait months as they were back-ordered. I believe that they are available now. I highly recommend trying them. Make sure that you get the correct type as there are several leggings with similar names.
It isn’t a total solution, but wearing them truly helps me. I hope that they can help you as well.
Glad you’ve found some help with compression garments, Geoff. As you state, there are lots of different types, including medical grade stockings and girdles that are available from medical supply companies. When Dr. David Bell was working with the late Dr. David Streeten (a pioneer in dysautonomia) they found that MAST (military antishock trousers) pants provided almost total symptom relief. These aren’t a practical solution, but the concept of using compression garments to “push” blood to the extremities is the same.
Yes! This resource is extremely helpful. “CFIDSLink” has also been invaluable over the years. I hope that you will continue to publish CFIDSLink even as you break new ground with the blog,”Reasearch1st.”
After 24 years with CFS (twenty years medically disabled, plus a breast cancer diagnosis six years ago), I recently found myself in the unexpected and unpleasant position of having to search for a new doctor after my physician of twelve years left his practice with no advance notice, no referrals, and no forwarding address.
It has been extremely discouraging to discover that it is no easier now, than it was twenty-four years ago, to find a physician willing to accept a CFS patient. The one that has accepted me as a patient is extremely unimformed and misinformed about ME/CFS, OI, NMH, and POTS.
The new doc believes that ME/CFS is the same illness as fibromyalgia
and has tried to use that treatment protocol with me. Fortunately CAA has made CFIDSLink available for years, and now Research1st. Both resouces have provided me with articles to give to the new doc.
I especially appreciate that these articles provide references to the published scientific data. I have relied heavily on articles from both of these resources over the last six months to “educate” the new doc and the physical therapist she sent me to see.
Thanks for being a lifeline!
“Many doctors (even specialists — cardiologists and electrophysiologists) think of OI, POTS, NMH, vasovagal syncope, neurocardiogenic syncope, etc. as conditions that occur only in people who faint.”
This was absolutely true in my experience. I think my doctor even had to write “pre-syncope” on my referral in order to get me a tilt table test. I had another doctor tell me that POTS was “very rare.” It seems like OI is under-recognized in general, not just in CFS patients.
I believe another common problem is that the symptoms of OI can feel *so much* like anxiety that they are probably often written off as *caused* by anxiety. I was once given a an “anxiety scale” to fill out at a psych visit, and many of the items on there were physical symptoms. I searched online, and this looks a lot like the questionnaire I filled out:
http://www.anxietyhelp.org/information/sas_zung.html
Look how many of the items on this scale are physical symptoms! And a lot of them quite consistent with OI, not to mention CFS generally. I certainly have shakiness, weakness, shortness of breath, etc. etc. Some of my worst moments with OI have been standing in lines, such as at the grocery store, and I have pointed out to my doctors that I do NOT have a phobia about cash registers!
It’s true that OI is under-recognized and under-appreciated in general and specialty medical practice. Although I don’t have CFS, I do have vasovagal syncope but it took 33 years to get a proper diagnosis. From age 2, I had “episodes” that were described as a blend of fainting and seizure. The first one occurred within a few months of my brother’s death from Sudden Infant Death Syndrome, so the pediatrician suggested maybe I was just trying to get attention. The episodes were infrequent throughout my early childhood, but even then, now I see the pattern of when they would occur. During adolescence/puberty they became more frequent. I saw a couple of pediatric specialists, including an neurologist, but the EEGs were mostly normal, so the doctors wrote it off to psychogenic causes and prescribed phenobarbital.
When I was away at college, I had an episode without warning, passed out and fractured my skull when my head hit the concrete floor. A brain hematoma and 5-inch basal fracture kept me in neurological intensive care for a week. Still no adjustment of my diagnosis, but by then there were some better antiepileptic drugs, so I was prescribed one (at too high a dose and nearly suffered kidney failure). A few years later, I fell forward during an episode and broke my nose. Obviously, the antiseizure medications were not controlling the problem!
It wasn’t until Dr. Rowe’s paper was published in 1995 and I began researching OI’s connection to CFS that I recognized the familiar pattern of symptoms in my own history. It took me about a year to convince my internist that this provided a better explanation of my history than atypical epilepsy (or just being highly “suggestible”). She finally referred me to an electrophysiologist (specialist within cardiology) for evaluation. When I suggested a tilt table test, he was reluctant to do it because he didn’t think my pattern fit what he thought of as NMH. After a few minutes on the tilt table, after my heart raced and I felt every familiar sensation, my heart stopped. The doctor brought me “to” and explained that after my heart stopped, my body jerked convulsively, a natural response to get my heart started again. He was no longer skeptical and I finally had (dramatic) “proof” of what had been a very difficult experience to describe to others. A bag of saline fluid through the IV line made me feel better than I had before the test and I went back to the office two hours after I had flatlined. A beta blocker has controlled my symptoms better than any of the other meds tried through the years. I still have rare episodes, but I now know the risk factors and can take precautions to avoid them, usually successfully.
So, yes. Getting doctors to understand the interplay of OI and other CFS symptoms can be a challenge, especially if your symptoms don’t fit whatever that particular doctor believes to be “classic” OI.
Kim, thank you so much for this article, for responding to comments, and relaying more information from Dr. Rowe and other sources. And thank you for sharing your own experience with OI. I too have had vasovagal syncope since childhood; it worsened after I got CFS.
When I had a tilt table test, the cardiologist said I had the worst reaction he’d ever seen. The diagnosis was vasovagal syncope with bradycardia (rather than tachycadia). Yet my symptoms are like those described for POTS. Is there any info available on whether/how OI with bradycardia should be addressed differently than POTS?
Finding ways to deal with OI has been an ongoing process for me — I’m looking forward to trying some things mentioned above. Unfortunately, I did not find midodrine or atenolol to be helpful (wonder if my bradycardia be a factor there). Also, for me, compression stockings were too hot and actually painful. I have had better luck with regular support stockings available in drugstores (like the L’eggs brand), as well as the vasoconstrictive supplement Butcher’s Broom (see http://www.webmd.com/vitamins-supplements/ingredientmono-320-BUTCHER'S%20BROOM.aspx?activeIngredientId=320&activeIngredientName=BUTCHER'S%20BROOM
The decongestant pseudoephedrine (original SudaFed) helps me too, but can cause trembling, dry mouth and higher blood pressure, and reportedly can interact with Butcher’s Broom (seems fine for me).
Thanks to an earlier CFIDS Association article, I started using a footstool when seated. Now I can even blow dry my hair! This also helps with Restless Legs Syndrome, which makes me wonder if there could be any connection between OI and RLS.
Thanks for research1st.com and all of the wonderful work of the CFIDS Association!
Hi Roxy,
I too am in the bradycardic group; my heart stopped cold on the tilt table. Please be sure to read Dr. Rowe’s clinical info about neurally mediated hypotension, which is another term used for the folks whose blood pressure drops precipitously: http://www.cfids.org/webinar/cfsinfo2010.pdf.
Thanks for your support and participation here.
Thank you — that document is a gold mine. I was surprised to read that asthma inhalers with beta-agonists can be a problem for those with NMH or POTS. So I have switched from Advair to one that is corticosteroid only. I already knew albuterol rescue inhalers gave me tremors and sweating, and now I see why. So helpful!
Hi Anne – Dr. Rowe kindly responded to our request for information about the potential for confusion about the symptoms of anxiety and those of orthostatic intolerance. His reply was worthy of its own post: http://www.research1st.com/2011/06/21/is-it-anxiety-or-oi/
Hi, great overview! Just one note, orthostatic tachycardia has been recorded much earlier. See the book “Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease” by A. Melvin Ramsay for reference.
Thanks, Tony. We’ll update the article to reflect that fact.
That webinar you did with Dr Rowe explained a lot to me and most of those techniques help during the winter, but I am findin no relief in the summer heat. In the winter I can wear the compression pantyhose and mid-thighUP bodysuit by Spanx, drink lots of water and eat salty foods and take my Midodrine. But I can’t wear all of that compression stuff when it’s 100F…
Like the other day, I took my 2.5mg Midodrine waited an hour and then got into a cool A/C car and drove to a cool A/C store where I could feel the cool air.. my sinuses were clear and all was fine.. UNTIL.. after 5 min in the store I felt faint and broke out in a hot flash. I ended up laying down on their floor for 20 min until I felt slightly better.. So I was not hot in was in only cool places and the Midodrine failed. Now what ?
I’m tired of being Vampyra in the Summer…at night is the only time between midnight and 6am when it’s cool enough to not feel hot or drugged. Only have fans for during the daytime..
The summer heat definitely intensifies problems with OI. This information is from Dr. Rowe’s written material. You may find that in summer, you need to employ more approaches than during other months of year. It’s also important to make sure other seasonal conditions are well-controlled, like asthma and allergies, because those can make symptoms worse too.
Here are his recommendations for more intense therapy (starting on page 9 of http://www.cfids.org/webinar/cfsinfo2010.pdf):
Steps 2 and 3:
For those with more frequent or more severe symptoms, the physical maneuvers, dietary changes, and physical therapy of Step 1 may need to be supplemented by medications. Most of the drugs in common use for NMH and POTS help to improve the ability of the vessels to constrict and return blood to the heart when we stand, increase the amount of salt and fluid the kidney returns to the circulation, or alter the release or response to norepinephrine or epinephrine.
While many of the medications listed below have been used by physicians for years to treat NMH or POTS, few have been studied formally in those with POTS, NMH, or chronic fatigue syndrome. Some have been tested in patients who have fainted one or more times, but are otherwise healthy; some have been tested in those with ongoing symptoms due to POTS, and some have been tested in NMH patients who were diagnosed with chronic fatigue syndrome.
This handout is based upon available research and our experience with NMH and POTS patients, most of whom came to see us because of chronic fatigue syndrome. The treatments listed require persistence, commitment, and the willingness to try several possible drugs and combinations over an extended period of time. Because there is a risk of serious side effects with some of the drugs (such as elevated blood pressure, elevated sodium levels, lowered potassium levels, or depression) careful monitoring is required. The following list illustrates medications that have been reported to help improve symptoms or tilt table responses in patients with NMH or POTS:
Medications that increase blood volume:
Fludrocortisone (Florinef), Oral contraceptive pills, Clonidine, Vasopressin
Medications that interfere with the release of or response to epinephrine and norepinephrine:
Beta-blockers (e.g., atenolol, propranolol), Disopyramide (Norpace), Angiotensin converting enzyme inhibitors/angiotensin receptor blockers
Medications that improve vasoconstriction:
Stimulants: (e.g., methylphenidate [Ritalin] or dextroamphetamine [Dexedrine]), Midodrine (Proamatine)
Wonderful article. I have had CFIDS for 16 years and OI has played a major role. Two things in this article struck me: one being that people with HIGH blood pressure can have it AND that drugs may be prescribed to block or lessen the effect of epinephrine. Here is why- after YEARS of low blood pressure, I was diagnosed with situational high blood pressure this year. At this point we are trying to control it with diet, which of course means cutting out all that salt I had been using to keep my OI at bay. Also after some dental work in the past few years, we discovered I am ‘allergic’ to epinephrine. I always knew that adreneline played havoc with my system ( natural or as an injection) but I never knew I was actually allergic and could have such frightening reactions. Guessing the allergic response has built up over time. Thanks yet again, for helping to make sense of the insanity of this disease!
I’d be very interested in hearing about your experience after dental work and adrenalin. Having had two recent hospital admissions after dental work, the last after a single filling and a specially ordered injection with no adrenalin, followed by a complete collapse, I’d like to know more about other peoples experiences.
I have CFS and OI (& other stuff, inc asthma) and the hot weather definitely makes things worse. I have found, though, that no matter how much sodium I take in, my blood levels of it are always low. I was wondering if that is at all common with OI, or if that is related to diabetes insipidous (water diabetes not the sugar kind), or if it could be something else altogether.
Also, I find it interesting to learn that birth control pills can help with OI. I have been on them for endometriosis and I have found that since getting CFS, they make even more of a difference in how I am feeling. Now that I think about it, a lot of the symptoms that get worse if I don’t take them are OI symptoms.
Dear Kim,
thanks, very good article! Should be made available to more people, doctors, relatives, etc. who have contact with CFS patients. – 24 years ago I was totally alone with my outbreak and hard learning experiences to continue living with what is commonly called CFS. There is no help from the normal medical field of doctors, hospitals, health insurance companies. – My wife was scared to death because she thought I would die when I fainted and stopped breathing. Rushing me to hospitals didn’t bring real help. In recent years I came to understand that this is a kind of PoTS or OI related to CFS’s autonomic nervous system problems.
Thanks again. At least some know and understand our problems.
Keep up the fine work. Pedro
Thank you, Pedro. The area of dysautonomia is not appreciated as much as it should be in general medicine and emergency medicine. It’s a relatively new field and the tools for diagnosis come largely from the space program. Here is a resource from the NY Medical College’s Center for Hypotension about the testing methods, for those who might be interested: http://bit.ly/pbRw0V. I hope some of the treatment approaches described in this article have been or will be beneficial to you.
Helpful info. Fortunate me I discovered your site by chance, and I am shocked why this accident didn’t came about earlier! I bookmarked it.
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My 32 year old daughter has been diagnosed with CFS, OI and Juvenile Diabetes. When she is unwell with symptoms of dizziness, nausea, other stomach issues, low body temperature and many other symptoms, she is debilitated. She ends up losing 10 or more pounds and cannot function.
I’m confused by the OI description since her symptoms go on for weeks at a time with no let up.
Can you explain how she fits into that diagnosis.
For those that have sx’s of OI, CFS, and generalized joint hypermobility – it’s a lot on one plate…. So Ehlers Danlos – OI – Chronic Fatigue….
I’m one of the hyperadrenergic types who gets a rapid rise in catecholamines upon standing… maybe not terribly over the normal blood amount of catecholamine – but more noted for how just a little change in position could send it straight up
To further aggravate I have essential hypertension and extremely labile hypertension – So you chase the highs – you get too low – and round and round you go.
I thought I overheard Dr. Rowe say to a person at a conference that patients with HTN who aren’t normally given things that could raise pressure – like the florinef, midodrine – or whatever those myriad of meds are — to help with OI — that oddly enough when given Doesn’t raise the b/p more…but can lower it so can be effective. So if you have HTN – this seems to not harm that but help it – so weird! I don’t even know who to talk to anymore about this – I’ve frustrated my neurologist no end – failed trials of pyridostigmine, guanfacine – but do take clonidine 3mg a day divided dosing – along with bystolic and a diuretic if needed also – in a day I can go from 148/112 to 83/50 — Fatigue is overwhelming need to get horizontal — only with long enough supine posture will fatigue begin to fade a bit – once or twice daily must lie down – but why? OI, CFS, some cervical neck issues, some leftover Epstein Barr effects (had as a kid – hospitalized a month)…. so confusing!
Has it been considered what part Orthostatic Hypotension/Orthostatic Intolerance plays as an underlying cause for people with CFIDS? I’ve had OI all my life, worse since developing CFIDS, of course. I’ve had some recent experience with blood pressure medication (Aldactazide) worsening my overall symptoms and making me very vulnerable to viruses, over a period of two years. I was sick all the time, one virus after another. I’ve been almost virus free in the past couple of months since I stopped taking it. Still have Chronic Fatigue symptoms, but not as vulnerable to viruses. Any thoughts?
These types of articles are VERY helpful. If I had a printer I’d be bringing this to my family physician too. Writing down the link will have to do!
I was not aware of Orthostatic Intolerance. It could explain many of the symptoms I’ve had. Especially the dizziness, vertigo, heart palpitations and more. My blood pressure has been very high lately too, never had to have pills for it before but now I do. I also wonder if that burning heat feeling on my torso is related? I’m always too warm, skin hot to the touch, but no fever. Almost feels like a sunburn.
It’s helpful to hear from you that you weren’t aware of orthostatic intolerance. Often when we post information about it we hear from people that “everyone knows that!” although it seems that there is much to learn and explore within this topic too. Many people think that high blood pressure is exclusionary for the ANS dysfunction, but that’s not true. It’s hard to treat because increased salt and some medications are contraindicated. Be sure to check out Dr. Rowe’s clinical info (http://www.cfids.org/webinar/cfsinfo2010.pdf) and the other links posted here.
These articles are very helpful and require further study at a later time. However, in my first read of this article, and prior articles on this topic from Dr Rowe, I have not seen any mention of how living at higher altitudes affects NMH, OI, POTS, etc. I have FM with many of these symptoms. Seemingly worse since moving to around 6000 ft in New Mexico. Previously I lived at sea level or below sea level until the move to NM in 2009. Also, interested in more information about how weather changes, i.e. atmospheric pressure changes, affect those with FM/ME/CFS. Had Dr Rowe addressed altitude and/or atmospheric pressure changes in relationship to these illnesses?
Hi Chris L.,
Yes, high altitude does compound problems with ANS dysfunction, orthostatic intolerance. Not sure about Dr. Rowe’s observations about atmospheric changes, but it’s something we frequently hear from patients. Thanks for your questions and participation.
I understand what you’re trying to mention, but i think something is wrong on this article.
After having spent years increasing my salt intake and being puzzled by the rapid reversal of OI symptoms every time I had an IV (docs often noted that I appeared dehydrated), I was diagnosed with central diabetes insipidus (not an easy diagnosis to get). I have been treated with desmopressin since Jan, 2009. Since then, I have not had ANY OI symptoms and many of my heart issues have also resolved. I have also found that I no longer get chilled. My heart rate has dropped back into the normal range and my BP has gone back up.
Why is there no mention of central diabetes insipidus as a possible underlying mechanism in ME? In reviewing my medical records, it is clear that I had been developing diabetes insipidus (DI) since 2004.
I am not the only ME patient that has successfully treated their fluid balance issues with desmopressin. I get that it is a powerful drug with some serious potential side effects IF USED INAPPROPRIATELY. However, if you have DI, the use of desmopressin is not inappropriate. Most docs simply don’t feel comfortable diagnosing DI or prescribing desmopressin (and for episodic DI it may be too big of a stick – increased fluid and salt intake might be enough).
For patients who develop florid central DI, not informing them of the real possibility that this could be the cause of their OI and that treatment with desmopressin is an option (or is absolutely necessary) could very well cost them their lives.
This information that patients and their doctors need. Many patients might be able to get by on the increased salt, fluids and maybe florinef. However, failing to address other more serious causes of OI is not serving the most ill (the 25% that are most ill/home bound) in the ME patient community.
Thanks, Shane, for sharing your experience and the important reminder that a diagnosis of CFS or ME doesn’t preclude other conditions from developing (or being present but undiagnosed). We regularly hear from people who discount new symptoms or different symptom patterns as being due to the unpredictable nature of CFS, but later learn than another medical condition was present. Sometimes they are treatable or manageable, as in your case. It’s important to be vigilant and to work with a physician who is vigilant to explore potential causes of new or unusual symptom patterns.
For those who aren’t familiar with diabetes insipidus, here is information from the National Library of Medicine: http://www.nlm.nih.gov/medlineplus/ency/article/000377.htm.
Hi Kim,
One clarification; I (and others including Rick VanKonnenberg and Dr. Paul Cheney) do not feel that diabetes insipidus is just another condition that developed on top of CFS. In Dr. Cheney’s protocol to treat Neurally Mediated Hypotension (NMH), he specifically mentions diabetes insipidus as a possible cause of hypovolemia.
Rick Van Konnenberg’s ME/CFS Myalgic Encephalopathy/Encephalomyelitis treatment protocol also discusses central diabetes insipidus as an important component of hypovolemia in CFS.
The Nightingale Definition of Myalgic Encephalomyelitis (ME) cites diabetes insipidus as a possible complication of ME.
Several studies of CFS and related diseases point directly to a perturbation of the mechanisms that produce/control the levels of anti-diuretic hormone (vasopressin) in CFS patients, specifically lower than predicted levels of ADH (arginine vasopressin):
Abnormal arginine-vasopressin secretion and water metabolism in patients with post-viral fatigue syndrome. Bakhiet, et al. Actu Neurol Scund., 1993: 87: 234-238.
Abnormalities in response to vasopressin infusion in chronic fatigue syndrome. Altemus, et al. Psychoneuroendocrinology 26 (2001) 175–188.
Chronic fatigue disorders: an inappropriate response to arginine vasopressin? S. J. Peroutka. Medical Hypotheses (1998) 50, 521-523.
Hormonal alterations in adolescent chronic fatigue syndrome. Wyller, et al. Acta Pædiatrica 2010 (99), pp. 770–773.
A Review Article: The neuroendocrinology of chronic fatigue syndrome and Fibromyalgia. Parker, et al. Psychological Medicine, 2001, 31, 1331-1345.
Results. One-third of the studies reporting baseline cortisol found it to be significantly low, usually in one-third of patients. Methodological differences may account for some of the varying results. More consistent is the finding of reduced HPA function, and enhanced 5-HT function on neuroendocrine challenge tests. The opioid system, and arginine vasopressin (AVP) may also be abnormal, though the growth hormone (GH) axis appears to be intact, in CFS.
Anti-diuretic Hormone (ADH), also known as arginine vasopressin plays numerous roles in the maintenance of proper fluid balance. In the kidneys, the collecting ducts are responsible for reabsorbing water that would otherwise empty into the bladder. Without ADH, the collecting ducts are largely impermeable to water.
In addition, ADH increases peripheral vascular tone. It is through this mechanism that ADH INCREASES BLOOD PRESSURE! In adequate levels of ADH leads directly to postural hypotension!
Lastly, anecdotal reports of frequent urination are quite common in ME/CFS patients. In private communications with two well known ME/CFS experts, brief informal surveys of their patients with OI found that a higher than expected percentage acknowledge previously unreported episodes of high volume fluid loss. The reason that these episodes went unreported was that in the big picture, patients rated episodes of high volume fluid loss as unusual but difficult to characterize and they assumed this to be a minor symptom relative to their other health issues.
Again, doctors are not comfortable with the diagnosis of DI and the prescription of desmopressin. We need to involve doctors with an understanding of DI (Dr. Gary Robertson, recently retired from Northwestern University, would have been a very good candidate). Less than optimal levels of ADH is a potential explanation for many of the cardinal symptoms of ME/CFS. ADH has received little investigation in spite of numerous pieces of evidence that it may be playing an important role in ME.
Let me know if you want links to, or copies of, any of the articles I have cited.
Desmopressin acutely decreases tachycardia and improves symptoms in the postural tachycardia syndrome.
Coffin ST, Black BK, Biaggioni I, Paranjape SY, Orozco C, Black PW, Dupont WD,
Robertson D, Raj SR.
Autonomic Dysfunction Center, Division of Clinical Pharmacology, Department of Medicine, Vanderbilt University, Nashville, Tennessee.
Heart Rhythm. 2012 May 3. [Epub ahead of print]
BACKGROUND: Postural tachycardia syndrome (POTS) induces disabling chronic orthostatic intolerance with an excessive increase in heart rate on standing, and many patients with POTS have low blood volume. Increasing blood volume is a promising approach to this problem.
OBJECTIVE: To test the hypothesis that desmopressin (DDAVP) will attenuate the tachycardia and improve symptom burden in patients with POTS. METHODS: In this protocol, patients with POTS (n = 30)
underwent acute drug trials with DDAVP 0.2 mg orally and placebo, on separate mornings, in a randomized crossover design. Blood pressure, heart rate, and symptoms were assessed while seated and after standing for up to 10 minutes prior to and hourly for 4 hours following study drug. RESULTS: The standing heart rate was significantly lower following DDAVP than placebo (101.9 ± 14.5 beats/min vs 109.2 ± 17.4 beats/min; P <.001). Standing blood pressure was not affected (P = .28). The symptom burden improved with DDAVP (from a score of 18 ± 18 arbitrary units [AU] to 13 ± 15 AU at 2 hours) compared with placebo (from 18 ± 17 AU to 19
± 16 AU; P = .010).
CONCLUSIONS: Oral DDAVP significantly attenuated tachycardia and improved symptoms in POTS. The safety profile of this approach would need to be examined before it can be recommended for routine treatment of these patients.
http://www.ncbi.nlm.nih.gov/pubmed?term=Desmopressin%20acutely%20decreases%20tachycardia
Hi Kim,
Thank you for the article! I had heard of this but didn’t pay any attention to it at the time, and so forgot about it. Thank you for bringing it to our attention.
Janis
Cutting edge: Neuronal recognition by CD8 T cells elicits central diabetes insipidus.
Scheikl T, Pignolet B, Dalard C, Desbois S, Raison D, Yamazaki M, Saoudi A, Bauer J, Lassmann H, Hardin-Pouzet H, Liblau RS.
J Immunol. 2012 May 15;188(10):4731-5. Epub 2012 Apr 13.
Abstract
An increasing number of neurologic diseases is associated with autoimmunity. The immune effectors contributing to the pathogenesis of such diseases are often unclear. To explore whether self-reactive CD8 T cells could attack CNS neurons in vivo, we generated a mouse model in which the influenza virus hemagglutinin (HA) is expressed specifically in CNS neurons. Transfer of cytotoxic anti-HA CD8 T cells induced an acute but reversible encephalomyelitis in HA-expressing recipient mice. Unexpectedly, diabetes insipidus developed in surviving animals. This robust phenotype was associated with preferential accumulation of cytotoxic CD8 T cells in the hypothalamus, upregulation of MHC class I molecules, and destruction of vasopressin-expressing neurons. IFN-γ production by the pathogenic CD8 T cells was necessary for MHC class I upregulation by hypothalamic neurons and their destruction.
This novel mouse model, in combination with related human data, supports the concept that autoreactive CD8 T cells can trigger central diabetes insipidus.
http://www.ncbi.nlm.nih.gov/pubmed/22504649
Even though there is no cure for asthma, the symptoms can usually be controlled with proper medication and a thorough lifestyle change, which should include a healthy diet and exercise.
Evidence strongly suggests that the volume handling abnormalities in pots relate to sodium handling. Electrolytes are routinely normal with reduced absolute plasma volume.
hyporeninism occurs in net deficiency which is one of the suggested pathological mechanisms of pots. Further a subset of pots patients gave elevated serum angiotensin II with paradoxically low aldosterone activity causing absolute hypovolumia.
an abnormality in renal dopamine activity leading to sodium wasting is also being explored.
lastly many pots patients have increased peripheral resistance rather than the opposite and pooling in the splanchnic (pelvis and stomach) circulation.
butchers broom is very helpful.
I’ve always had issues with standing and getting up from the floor or bending down and picking something up from the bottom shelf of a store. This is definitely helpful. Given I normally have low blood pressure, my doctors just discount it. Thank you..this is very very very helpful!