By Gail Kansky

Dr. Hugh Calkins is part of the team at John's Hopkin's Medical Center that published the first work on neurally mediated hypotension (NMH) in adolescents. Since then, thousands have been tested and, because they continue with their strict protocol, he feels that other studies that have found a lesser percentage of PWCs that have NMH are not using the exact methods used by JH (John Hopkins). Indeed, JH has found the same consistent results.

The first treatments tried are fludrocortisone (florinef), salt, water, and beta blockers. The Woods Mental Inventory showed that most PWCs dramatically improved, and the Ability Index indicated that most were helped: 

  • 47% had a resolution of their symptoms 
  • 26% had no response 
  • 37% saw partial improvement
Dr. David Streeten actually had linked postural abnormalities to fatigue before Johns Hopkins, Dr. Calkins said, but he had not linked it to CFIDS until his recent work with Dr. David Bell, when he showed the heart rate goes up when a PWC stands. This researcher found 62% had NMH, 5% had POTS (another form of dysautonomia), 11% had both, and 77% were abnormal. Indeed, those with POTS are more likely to have more severe symptoms. Said Calkins, "Dr. Streeten showed some very elegant and nice data."

Dr. Calkins concluded that CFIDS is closely associated with NMH with a 90% prevalence, the same prevalence found in FMS. This means there is a problem of not enough blood flow to the brain. The restricted blood to the gut produces irritable bowel syndrome, nausea, etc. With less blood flow to the skin, pain is activated. One experiences this while standing for a time, whether it is showering or standing in line. Positive NMH patients are tried on florinef. It must be used with adequate liquid and a high-salt diet, and a certain percentage of PWCs cannot tolerate that medication. The florinef begins with 0.5 mg and is gradually increased to 20 mg daily accompanied by the high-salt diet. Beta blockers such as despyramide are used along with an SRI, such as 100 mg bid of Serzone, which is slowly increased to 150 mg p.d. If there are still no results, theoder, midodrine or ritalin, and erythropoieten (Epogen Alpha) are tried. Mitodrine is often effective if a PWC could not find help from the previously prescribed treatments. They give this 3X daily and usually "see a response fairly quickly." Dr. Calkins stated, "If a tilt-table response is positive, it justifies treatment. While tilt-table testing is not covered under most insurance, "light-headedness" gets the patient reimbursed!

"Sodium, in fact, is good. It makes no sense to restrict your salt intake... salt restriction is a very ineffective way to lower blood pressure... in our experience, Florinef has been the single, most effective drug."

Both Drs. Streeten and Calkins feel NMH results from some insult such as a viral infection that damages the brain. Dr. Calkins also thinks cognitive problems are caused by NMH, although he has to do a study taking brain scans before and after tilt-table testing to prove this. Right now, the lack of funding does not allow this study.

One hypertensive PWC saw her blood pressure go down with Florinef! Drugs for hypertension can actually make the patient worse! He suggests using beta blockers or ACE inhibitors. The beta blocker, often Atenolol, is used to block the reflex. It also helps to tilt one's bed about 5% with the head up, wear support hose, and increase salt and water.

Adult-onset asthma is all part of CFIDS, and medications for asthma should actually help the NMH reflex. "Medicinal licorice is a good alternative for those sensitive to florinef," said Dr. Calkins, although it is hard to get the correct dosage. This is not the "licorice candy (actually anise), but the medicinal licorice root."

The licorice tastes a bit like molasses, offered one PWC, and is combined with milk. It's about $31 for 8 oz. and usually a quarter of a teaspoon is taken in the a.m. (To order this product, call 1-800-480-3432.)

It is common to have an immune response while being tilt tested. Dr. Calkins feels this activity is secondary to blood abnormalities. The treatment, however, is not a cure. Those with POTS are given the same treatment, although he usually is faster to prescribe the mitodrine. The treatment can resolve immune system problems as well as sleep disorders.

Not every PWC has NMH. Every physician should take the blood pressure of their patient both lying down and standing. If they don't, they're not taking the blood pressure correctly! Dr. Calkins feels that NMH reflexruns in families and is probably due to genetic susceptibility. "We're happy to take calls from physicians." (1-800-624-4562)

[Ed. note: To help with NMH, try crossing your legs while standing, squat, stand with one leg on a chair, bend forward from the waist a bit, sit in a low chair, lean forward while sitting with hands on knees. A physician s brochure is available by calling the 800 number above that lists further medications for your physician to try with the dosage included.] 

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606