Guest guest Posted March 8, 2003 Report Share Posted March 8, 2003 In a message dated 3/8/2003 4:19:49 PM Mountain Standard Time, sapph30@... writes: > Hi, my name is Patti, I'm 34 and I may have Chiari. I'm waiting for the > neurosurgeon to confirm with the radiologist. Apparently, I've been > misdiagnosed with possible MS for the past 4yrs. At the beginning of this > year, I started getting awful pains in the lower back part of my head any > time I moved. I still get it several times a day.Does anybody have any > suggestions to help with the pain and try to lead a normal life? > Thank you Hi Patti, I'm new to the group, 35 and am also waiting for the neurologist to confirm with the radiologist. One thing that has made a difference for me is wearing the right shoes. I have a pair of New Balance sneakers that really seem to help reduce impact and jarring. I'll look forward to what everyone else in the group has to say. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2003 Report Share Posted March 8, 2003 In a message dated 3/8/2003 4:19:49 PM Mountain Standard Time, sapph30@... writes: > Hi, my name is Patti, I'm 34 and I may have Chiari. I'm waiting for the > neurosurgeon to confirm with the radiologist. Apparently, I've been > misdiagnosed with possible MS for the past 4yrs. At the beginning of this > year, I started getting awful pains in the lower back part of my head any > time I moved. I still get it several times a day.Does anybody have any > suggestions to help with the pain and try to lead a normal life? > Thank you Hi Patti, I'm new to the group, 35 and am also waiting for the neurologist to confirm with the radiologist. One thing that has made a difference for me is wearing the right shoes. I have a pair of New Balance sneakers that really seem to help reduce impact and jarring. I'll look forward to what everyone else in the group has to say. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 Kim CoQ10 is one of the co-factors that the body produces and uses within the mitochondria to start the process leading to energy. There are a few labs which check its level in your blood. This can safely be sent out if the drawing lab follows the correct procedures. One of the therories is that even with a normal level, we need to have extra to hopefully jump-start the energy process. I wish I knew more bio-chemistry to understand in depth what our bodies do with it. It is an important co-factor and there are now skin creams, etc. that puts it in for health of the cells. laurie > > Reply-To: > Date: Thu, 03 Mar 2005 03:09:44 -0000 > To: > Subject: head pain > > > > > What is CoQ10, and how do you know if your level is high enough? > Kim > > >> I had the same pains in my head until I got my CoQ10 levels up > high >> enough. I suspect but don't know for sure that they were lactic > acid >> spikes. My MRS showed many lactic acid spikes. >> >> > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 It is one of the main parts of the " mito cocktail " . It really stands for CoEnzymeQ10. Vitamins and Cofactors Vitamins and cofactors are compounds that are required in order for the chemical reactions, which make energy, to run efficiently. By definition, a cofactor can be made by the body, whereas a vitamin cannot, and therefore must be eaten. For most people, a regular diet contains all the vitamins one could possibly need and their bodies can make as much of any specific cofactor that it needs. For those with mitochondrial disorders, added vitamins and cofactors can be useful. The use of supplemental vitamins and cofactors is controversial in that there are no proven benefits to some of these therapies. For disorders of OXPHOS, coenzyme Q10 is considered as a generally accepted effective therapy, although it may not ultimately be effective for an individual patient. Other treatments are proven therapy is specific disorders, but in other disorders cannot be considered as " proven and effective " but still may be helpful. Some treatments should only be undertaken under the specific guidance of your physician. For specific information about the controversy, as it relates to your or your child's situation, ask your physician. Most of these vitamins can be purchased from many sources, including the drugstore. The sources listed below have been found to be fairly priced (often significantly less than the drugstore) and sell very high quality products. These supplemental compounds can serve two functions: -POSSIBLY ENHANCE ENZYME FUNCTION AND RESULT IN IMPROVED EFFICIENCY OF ENERGY GENERATION -SERVE AS ANTIOXIDANTS, WHICH MAY SLOW THE PROGRESSION OF THE DISEASE Table 2: Vitamins and Supplements That May be Helpful Table 2a: Suggested to most of my patients Supplement Dose Range Patient Dose CoQ10 5 - 15 mg/kg/day levo-carnitine (Carnitor?) Variable, starting dose of 30 mg/kg/day, typical max 100 mg/kg/day Riboflavin (B2) 50-100+ mg a day Table 2b: Second Tier Supplements Supplement Dose Range Patient Dose Acetyl-L-Carnitine 250 - 1000 mg per day Thiamine (B1) 50-100 mg a day Riboflavin (B2) 50-100+ mg a day Nicotinamide (B3) 50-100 mg a day Vitamin E 200-400 IU; 1 - 3 times a day Vitamin C 100-500 mg; 1 - 3 times a day Lipoic Acid (?-lipoate) 60-200 mg; 3 times a day Selinium 25-50 micrograms a day ?-carotene 10,000 IU; every other day to daily Biotin 2.5 - 10 mg a day Folic Acid 1 - 10 mg a day Table 3: Medication, Minerals, Vitamins, Substrates that May be Helpful (only to be used under a physicians direction) Supplement Dose Range Your Dose Calcium Variable Magnesium Variable Phosphorous Variable Vitamin K3 5 - 30 mg per day (1-) Succinate 6 gm per day Creatine 5 gm bid after initial load (adults) Uridine To be determined Citrates variable Prednisone variable 15 Bruce H. Cohen, MD Think Mitochondria 15 UMDF Avoidance of Physiologic " Stress " Physiologic stress are external factors that may result in worsening the metabolic situation, which may result in temporary, or in sometimes, permanent worsening of the condition. It is impossible to avoid all physiologic stressful conditions, so one should not attempt to do so. However, recognizing what may be stressful for a patients allows one to adjust the lifestyle. Many patients and their parents have already identified these stresses, despite not knowing why the stresses were important, and avoid them. . Cold Stress is extremely important. Thermal regulation (temperature control) is not always normal in people with mitochondrial diseases and exposure to cold can result in severe heat loss and trigger an energy crisis. When going out into the cold, all exposed body parts should be covered, and exposure to extreme cold be avoided for anything more than a short period. Over bundling can be a problem too (see below). . Heat Stress can be a problem in some people. This is especially true of those with an inability to sweat normally. Heat exhaustion and heat stroke may occur on hot days. An example of a typical scenario for this situation would be a child would seems to " wilt " in situations like hot classrooms, whereas the other students function normally. Light clothing is important. Patients should avoid direct sunlight on hot days and stay indoors if it is too warm outside. An air conditioned environment may be needed. . Starvation....see above about fasting . Lack of sleep may be possibly be harmful. . Individual distinctive stresses Avoidance of Toxins . Alcohol has been known to hasten the progression of some conditions. . Cigarette smoke, probably due to the carbon monoxide is known to hasten the progression of some conditions. Remember that carbon monoxide kills by inhibiting complex IV of the OXPHOS chain. If there is already a dysfunction of OXPHOS, why make it worse. Cigarette smoke will make it worse. . MSG (monosodium glutamate) has for years been known to cause migraine headaches in otherwise healthy individuals, and may trigger these events in susceptible people with mitochondrial diseases. MSG is frequently added to Chinese (and other Asian) foods, and is also found in high levels in dried and canned soups. Read the label and avoid MSG. 16 Bruce H. Cohen, MD You can get this and more information at the UMDF.org website under: Library: Recommended Reading: Mitochondrial Cytopathies over on the right top side of that page. klaga5 wrote: > >What is CoQ10, and how do you know if your level is high enough? >Kim > > > > >>I had the same pains in my head until I got my CoQ10 levels up >> >> >high > > >>enough. I suspect but don't know for sure that they were lactic >> >> >acid > > >>spikes. My MRS showed many lactic acid spikes. >> >> >> >> > > > > > > > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
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