Dr. Peter Rowe of the Johns Hopkins Children’s Center notes that the effectiveness of most orthostatic intolerance effecting drugs have not undergone treatment trials in chronic fatigue syndrome or POTS and that it may take time for ME/CFS/POTS patients and their doctors to find the drug or combination of drugs. Because these drugs effect basic processes in the body careful monitoring is needed.
Drugs That Increase Blood Flows by ‘Tightening’ Blood Vessels
Blood Volume Enhancers
- Stimulants (Ritalin, Dexedrine, Adderall)
- Midodrine (ProAmatine, Amatine, Grudron
- Modafanil (Provigil)
- Pseudoephedrine (Sudafed)
- Selective serotonin reuptake inhibitors such as fluoxetine (Prozac), sertraline (Zoloft) and escitalopram (Lexapro) or related medications such as Effexor Cymbalta.
Drugs That Effect Epinephrine/Norepinephrine Release
- Fludrocortisone (Florinef) - is used to treat neurally mediated hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS). By helping the kidneys retain more sodium, Florinef increases blood volume and vasoconstricts the blood vessels. (Dilated blood vessels are a problem in one form of POTS)
Two studies did not find Florinef effective but doctors report this drug can be very helpful in the right patient. Dr. Bell, for instance, found it helpful in about 25% of his patients.
Dr. Rowe emphasizes that salt intake must be increased for this drug to work and that Florinef is often helpful when used with low dose beta blockers in his adolescent patients. (People with low plasma rennin levels should not take Florinef)
Salt and fluid intake should be increased prior to taking the drug. Starting with a low dose (1/4 table a day: 0.025 mg), Dr. Rowes increases the dosage by ¼ table every 4-7 days to a maximum of 1 ½-2 tablets a day (.2 mgs). Because florinef reduces potassium levels potassium supplements (8-20- mEq) should be taken. If the lactose in Florinef is a problem compounding pharmacies can produce formulations without it.
- Erythropoietin (Procrit, Epoietin-alpha)
- Saline Solution
- Oral rehydration solution - Oral rehydration solution is currently being testing in ME/CFS/POTS. It's much, much cheaper than saline and can be made at home. Found out how here.
- Desmopressin (DDAVP) - by increasing water absorption by the kidneys desmopressin increases fluid retention and thus increases blood volume. A 2012 and a larger 2015 study found that DDAVP decreased the heart rates upon standing and improved symptoms. About 2/3rd's of patients in the larger study were able to tolerate the drug. Of those about 40% experienced significant symptom relief upon standing including reductions in dizziness, fainting, fatigue, anxiety and palpitations.
- Oral Contraceptive Pills
- Vasopressin - has much the same effect as desmopressin but also triggers sympathetically mediated vasoconstriction.
- Atenolol (Tenormin) - a beta blocker, Tenormin reduces heart rates by inhibiting epinephrine activity and can be effective in neutrally mediated hypotension or POTS. Beta blockers are contraindicated in patients with low blood volume or who experience increased heart rates as a consequence of blood pooling in their lower body. Dr Rowe recommends 12-25 mgs a day or 1 mg. for every kg. of body weight (for NMH). Those with heart rates greater than 50 bpm higher doses may not tolerate higher doses.
- Propanolol (Inderal) - is a beta blocker that reduces sympathetic nervous system activity by blocking epinephrine and/or norepinephrine. Reduced heart rates and blood pressure can occur. Because propanolol can also reduce water retention it may also reduce blood volume. Raj et. al found that low doses (20 mg) significantly reduced heart rates and improved symptoms in POTS. Higher doses could have negative effects. Raj reportedIn an email, fatigue and pain researcher Dr. Light, suggested another reason why low doses of propanolol may be more effective than high doses.
- Disopyramide (Norpace)
- Angiotensin converting enzyme inhibitors/angiotensin receptor blockers
- Mestinon - (Pyridostigmine bromide) - reduces tachycardia (high heart rates) by decreasing the degradation of acetylcholine, the neurotransmitter used by the vagus nerve to stimulate the parasympathetic nervous system. A 2005 study found that Mestinon both reduced heart rate and improved symptoms in POTS.