My previous health: My immune system problems became evident in 1983 when I developed Multiple Chemical Sensitivity. M.E. came on suddenly, in 1991 when I was 34 years of age, about 6 weeks following a heavy flu. I was housebound and so fatigued that I was sleeping most of the day and night, and suffering from a broad range of M.E. symptoms.
Other treatments that I tried: Medical tests and advice have pointed me to a variety of treatments that have reduced my symptoms. Magnesium sulphate injections halted my decline; high doses of evening primrose oil for three months eliminated the twitching and "burning" in my limbs; undertaking an elimination diet to discover foods to which I was intolerant and then avoiding them cut out the chills, dizziness, swollen glands, a lot of the brain NIMODIPINE USE IN M.E. / CFS: A Comprehensive Guide Page 16 (Moral rights asserted by Susan Parker, 2013.) fog, the constant heavy fatigue, and the brain-too-busy-to-sleep nights. I subsequently felt bright in the mornings but was still quite fatigued by any activity and needed a nap in the afternoon. As my DHEA barely registered on tests and the adrenal curve was abnormal, I took DHEA supplements for 2 years. This resolved my orthostatic intolerance (brief drop in blood pressure upon standing) and slightly increased my energy and stamina. A course of tropisetron (Navoban) gave me a boost in functioning (but the expense to benefit ratio was high so I didn't repeat it despite my doctor’s encouragement). Seven years of dietary advice and supplements, homeopathic treatments, and enzyme potentiated desensitization (EPD, an allergy treatment) from the Royal London Hospital for Integrated Medicine improved my nutrition, fitness and resilience. (Notes: 14, 18, 31, 87, 89, 125.)
20% of well before nimodipine: Despite the improvements, I was largely housebound, going out occasionally on foot for short distances or on longer outings in a wheelchair. I needed a long nap every afternoon and a day or more of rest after an outing. I had a lot of muscle pain after a morning of light household tasks. I was about 20 to 25% of well. I have listed these previous therapies to show the degree of improvement that I had before I used nimodipine. If I had tried it earlier I would not have evidenced much success as the benefit would have been masked by my food intolerance symptoms. It is also possible that the earlier treatments put my body's systems in a state where it could benefit from the increased blood flow to the brain and its knock-on effects of nimodipine.
30% of well on 45 mg nimodipine: At this point in 2006 my doctor thought that due to my otherwise poor quality of life, I should be allowed to take the unknown risk of using an untested drug. After researching the drug, I began taking nimodipine. I started on 15 mg (1/2 tablet) and increased the dose by 15 mg every two weeks. I didn’t have any side effects, tolerating it well although I have a history of intolerance to some types of drugs. On the 4 th day of taking 45 mg per day, I got a sudden rush of foul-smelling odour in my arm pits and felt nauseous. The 5th day was the beginning of my improvement. I was notably better and the previous day's symptoms had subsided. I no longer felt sleepy the whole of the night so stopped sleeping in the afternoon, but I did need an hour of rest in a chair. At this dosage I couldn't do more outside of the house, but I was more active inside the house. I was about 30% of well.
55% of well on 75 mg of nimodipine: After two weeks I increased the dose to 60 mg per day and again got the odour and nausea on the 4th day, and then improved on the 5 th day. At this point I didn't need an afternoon rest, and I could walk further and go out for a whole day. My muscle soreness, joint stiffness, cold extremities, and brain limitations were reduced. After a year at 60 mg, I increased the dosage to 75 mg per day split between morning, noon, and late afternoon. I could do much more at this level, having improved in strength and ability and I was slowly reconditioning my mind and body. I was very busy in the home and could go out most days to do a little shopping. I participated in volunteer and social activities and enjoyed long day trips and holidays overseas. I could walk 3 miles a day. With the use of pacing to vary activities throughout the day and across days, I was functioning at about 55% of well. In the same month that I increased dosage to 75 mg I also began injections every six months of 300,000 units of Ergocalciferol Vitamin D which would have boosted the general health of my body.
80% to 90% of well on 90 mg of nimodipine: In 2008 I increased the dosage to my present level of 90 mg per day, taken as 30 mg three times a day. I saw a gradual increase in benefit such that I now organise and manage large projects and studies using intensive as well as repetitive mental and physical activity. I can now walk 6 miles a day, run and dance, and NIMODIPINE USE IN M.E. / CFS: A Comprehensive Guide Page 17 (Moral rights asserted by Susan Parker, 2013.) drive a car at home and abroad. In 2010 I was 70% of well and now, in 2013, I am about 80% of well with mental clarity nearing 90%. Much reduced but still a problem is face pain from continuous concentration, and neck cramp causing vertigo and nausea from carrying an item of moderate weight. Trials at reducing the dosage: I have tapered down my dosage of the drug 5 times, but saw a progressive regression with each 15 mg reduction. I lost all benefit when I reduced to a dosage below 45 mg (which is the level at which I first felt a benefit.) After each reduction trial I have tapered the dose back up to the starting level.
My present health: I have now been taking nimodipine for more than 7 years and have never had any side effects other than the fleeting ones on the 4th day following a dose increase. My blood pressure has always been the low-end-of-normal; it hasn’t been changed by the nimodipine use and doesn’t cause dizziness. I have regular blood screenings and have two “abnormal” results. My serum ferritin has occasionally been high, but that pre-dated the nimodipine use. My liver ALT enzyme varies from 30 to 84 (reference range of 10 to 35) and this is possibly caused by the nimodipine (2% get this effect), but it is a transient effect common with many medications and does not mean that the liver is harmed; my normal blood counts confirm this. (Notes: 10, 13.) I continue various homeopathic remedies, and have regular vitamin D injections because I don’t tolerate oral supplements. Although many of my intolerances have disappeared over the years, I still need Creon digestive enzymes to digest meat and fish, and I am still intolerant to herbs, spices, flavourings, onions, citrus, eggs, beef, apples, peppers, mustard, and a few other things. I have every reason to think that I will continue to make progress.
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