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Arachnoiditis: by L.O. Simpson & M.G. Anderson TRIGGERS: 66 subjects described factors or situations which precipitate or aggravate symptoms, especially pain.
Activities listed included walking, negotiating stairs, lifting objects, carrying things, house work, gardening, exercising, driving, hanging washing, jarring movements, sudden movements.
Therapies: listed by 2 subjects as precipitating pain:-
Weather & ambient temperatures affected 15 ( 23%) Included variations in ambient temperature; hot weather; heated rooms; cold Weather; humidity; rain. Various specific factors. Mental and emotional stress, general tiredness, intercurrent illnesses, flu injections, menstruation, pressure on or under legs when seated; insufficient sleep, tight clothing, wearing shoes, flapping of clothes or breeze on hypersensitive skin. No obvious causes. Six were unable to identify specific factors; examples of terms used were “Just me”, “Doing something different”, “Random”, “Just happens”. TREATMENTS Participants were asked to list treatments used to alleviate their symptoms. 66 of the 69 completed this section. There were four main categories:-
In the NZ survey 20% did not use drugs. In Smith’s survey 3% did not use drugs. Nine added comments such as:- No real sustained relief; Limited relief; Minimal effectiveness; ? how effective; Of some help; Nothing really helps. Drug Therapy A total of 45 (68%) were using drugs. Eleven did not name the drugs but used terms such as Medications, Painkillers, Analgesics, Prescription drugs. For the purposes of this report these general terms were deemed to refer to, or to include, analgesics. Named drugs varied from one to seven per individual for the remaining 34, as follows:-
Analgesics In addition to the eleven mentioned above who did not specify the analgesics used there were 27 who named the preparations, giving a total of 38 (58%). Most of the analgesics were being used on a regular basis, others as required. Included were Morphine preparations, Demerol, Codeine, Temgesic, Tramadol, Fortral,Digesic Pandeine, Panadol. Comparisons of the use of narcotic and non narcotic analgesics:- NZ survey: 58% Smith’s survey: 56% Long’s review: 71% Anti-Inflammatories Recorded by ten (15%).. Named preparations included Ibuprofen, Voltaren, Piroxicam. (45% anti-inflammatory usage in Smith’s survey). Anti-Convulsants Recorded by seven (11%) and included Epilim, Neurontin, Tegretol, Mysoline. (26% in Smith’s survey). Muscle Medications. Used by eleven (17%) Norflex, Soma, Baclofen, Quinine, Rivotril. (12% in Smith’s survey ) Benzodiazepines. Used by 4 (6%), included Valium and Lorazepam. (12% in Smith’s survey.) Cardiac Drugs Listed by three. Corgard and Mexilitene were named by two. Antidepressants. Used by twelve (18%) eg Amitryptiline, Nortryptiline, Nefazodone, Desipramine, Methomeprazine, Avoxetine. (28% in Smith’s survey). Dietary Supplements were being trialled by one who had stopped taking morphine (which was effective for pain control) in order to ascertain the effectiveness of Enzogenol, St John’s Wort, Multivite/Minerals and Bee Pollen. Other drugs listed were Halcion, Maxolon, Buscopan, Phenergan, Steroids, Catapres, Imigran injections (used as required for severe migraine headaches). Additional Treatment Options Used. In addition to, or alternative to, drug therapy for pain and muscle spasm a variety of treatment options were listed. Rest appeared most frequently, followed by warmth or heat from pools including spa pools, hot pads, wheat bags, electric blankets, hot bath, hot shower. Treatment
PART II. 46 of the original 69 respondents, ie 67%, participated in the second phase of the study which was designed to assess the value of Evening Primrose Oil as a dietary supplement for providing relief of symptoms experienced by arachnoiditis sufferers. Number of participants trialling EPO following the blood test - 33 (72%) Number of participants not willing to try EPO - 13 (28%) Reasons for not trialling EPO:-
Participants who were using EPO were asked to stop taking the product for 2 weeks and then to continue again in order to compare symptoms while on and off the supplement. At end of study:-
Reasons for not continuing with EPO:-
Different EPO products.
No particular product appeared to stand out as superior to others. The effectiveness of any product appeared to be an individual response. Side effects of EPO. Respondents were asked to comment on side effects experienced from EPO.
because of co-incidental development of other problems. Side effects reported.
Gastrointestinal side effects included nausea, vomiting, gastric acid reflux, abdominal distension, diarrhoea. One reported that nausea and digestive upsets occurred with one EPO product but not with the alternative one used. Positive effects of EPO. Comments were invited re the positive effects on symptoms in those who continued to use EPO, and any changes during a 2 week period off the supplement. Positive comments were as follows:-
During a 2 week period when EPO was not being used 16 of the 19 subjects noted a deterioration in that symptoms worsened, and that there was a noticeable improvement again on resuming the supplement. One person was not prepared to experiment by stopping it because of the marked general improvement that had taken place. One noticed no change in symptoms whether on or off EPO. One thought that the improvement was likely to be a combination of EPO and additional medications of herbs, multivites etc. EPO Dosage. The recommended dose is 4,000mg daily. The daily dosages used by these 19 respondents varied from 1,000 to 5,000mg. |
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