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Moyamoya Related Topics >> Moyamoya Related Information and Support >> headaches and coenzyme Q10 or other treatments http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1233799564 Message started by mjmom on Feb 4th, 2009 at 9:06pm |
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Title: headaches and coenzyme Q10 or other treatments Post by mjmom on Feb 4th, 2009 at 9:06pm
I recently wrote asking if anyone out there has or is currently dealing with chronic headaches post surgery. My son, soon to be 14 yrs. old, had bilateral surgery in 99. He had had headaches before surgery and definitely still suffers from them now. They have seem to have gotten worse over the past several months with him having them almost every single day. They do vary in intensity but he has missed alot of school and social engagements. His neurologist has been following him carefully (with MRIs, etc) and has put him on a calcium channel blocker (Norvasc) for prevention of headaches. Unfortunately, he is still suffering from them altho they have gotten SLIGHTLY better. I was wondering if any of you who have these headaches have had other forms of treatment(s) that have worked. One person had written that her daughter was put on CoEnzyme Q10 which has been helpful. I would like to find out more about that. Needless to say, I am very desperate to get him some relief!!
Thanks so very much!! Gretchen |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by Jam on Feb 14th, 2009 at 3:58pm
Hi there,
This is the information you are looking for: Sandor PS, Di Clemente L, Coppola G, et al. Efficacy of coenzyme Q 10 in migraine prophylaxis: a randomized controlled trial - compared CoQ10 (3 x 100 mg/day) and placebo in 42 migraine patients in a double-blind, randomized, placebo-controlled trial. CoQ10 was superior to placebo for attack-frequency, headache-days and days-with-nausea in the third treatment month and well tolerated; 50%-responder-rate for attack frequency was 14.4% for placebo and 47.6% for CoQ10 (number-needed-to-treat: 3). CoQ10 is efficacious and well tolerated. Rozen TD, Oshinsky ML, Gebeline CA,, et al. Open label trial of coenzyme Q10 as a migraine preventive. Cephalalgia 2002;22:137–41 - Thirty-two patients (26 women, 6 men) with a history of episodic migraine with or without aura were treated with coenzyme Q10 at a dose of 150 mg per day. Thirty-one of 32 patients completed the study; 61.3% of patients had a greater than 50% reduction in number of days with migraine headache. The average number of days with migraine during the baseline period was 7.34 and this decreased to 2.95 after 3 months of therapy, which was a statistically significant response (P < 0.0001). Mean reduction in migraine frequency after 1 month of treatment was 13.1% and this increased to 55.3% by the end of 3 months. Mean migraine attack frequency was 4.85 during the baseline period and this decreased to 2.81 attacks by the end of the study period, which was a statistically significant response (P < 0.001). Please be careful: the dosages should be re evaluated according to the childs body weight, assuming full doses apply to a 70kg person. There are other 'natural' remedies that have been tested: If you are interested let me know; I can post them up same as this message. Jamil |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by rpmom on Feb 14th, 2009 at 5:02pm
My son Robert, now 12 years old. Has been taking CO Q10 for over 2 years now. Robert weighs about 75 lbs and takes twice a day 200 mg.
Robert only has headaches once every 2 or 3 months. He life is alot like a regular kid now. robert used to lay around and missed out on alot. You should get a prescription for CO Q10, because over the counter varies to much in dosages. Hope this helps Julie |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by mjmom on Feb 15th, 2009 at 8:43am
Hi Jamil and Julie,
Thanks so very much for providing some insight into the use of CoEnzymeQ10 and the treatment of headaches. Matt was just recently put on Topamax since the Norvasc did not do much to prevent the HAs. We will see how Topamax works for him and if it doesn't, I will then check with the neurologist about the CoEnzymeQ10. I would much rather have him take something more natural though. The Topamax, as with most meds. is not without side effects. As I mentioned in my orginal post, I will do (as I know that you both would do) anything to help get rid of those awful HAs!! It is so great to have others out there who know what this is all about and can share their experiences and advice!! Thanks again and I wish you good health, Gretchen |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by Jam on Feb 16th, 2009 at 5:17pm
AD Hershey et al. Coenzyme Q10 deficiency and response to supplementation in pediatric and adolescent migraine. Headache 2007 47: 73-80:
Children and adolescents with low CoQ10 were recommended to start 1 to 3 mg/kg per day of CoQ10 in liquid gel capsule formulation. On this dosage after 97 days the total CoQ10 level improved from 0.60 +/- 0.20 microg/mL to 1.20 +/- 0.59 microg/mL whilst (P < .0001), while the headache frequency improved from 19.2 +/- 10.0 to 12.5 +/- 10.8 (P < .001) and headache disability assessed with PedMIDAS improved from 47.4 +/- 50.6 to 22.8 +/- 30.6 (P < .001). So, for a 75lb child the equivalent dosage would be (75/2.2 x 1) to (75/2.2 x 3) = 34 - 102 mg per day. Looking at the other studies mentioned in the earlier post with adult dosages of 150 - 300 mg per day that would work out to (75/165 x 150) to (75/165 x 300) = 68 - 136 mg per day. As far as I could check, these are the main studies on CoQ10. Jamil |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by Jam on Feb 16th, 2009 at 5:27pm
Hathcock J. ,Shao A. Risk assessment for coenzyme Q10 (Ubiquinone). Regul Toxicol Pharmacol. 2006;45:282-8: The OSL (observed safe level) risk assessment method indicates that the evidence of safety is strong at intakes up to 1200 mg/day.
Weis M, Mortensen SA, Rassing MR, Møller-Sonnergaard J, Poulsen G, Rasmussen SN. - Bioavailability of four oral coenzyme Q10 formulations in healthy volunteers - Mol Aspects Med. 1994;15 Suppl:s273-80. - The bioavailability of four different Coenzyme Q10 (CoQ) formulations was compared in ten healthy volunteers in a four-way randomised cross-over trial. The result suggests that the soya bean oil suspension of CoQ (Bioquinon) has the highest bioavailability Chopra RK, Goldman R, Sinatra ST, Bhagavan HN. - Relative bioavailability of coenzyme Q10 formulations in human subjects - Int J Vitam Nutr Res. 1998;68(2):109-13 - The relative bioavailability of typical commercially available forms of coenzyme Q10 (CoQ10) was compared with that of Q-Gel, a new solubilized form of CoQ10, in human subjects in two separate trials. In the first, standard softgel capsules containing CoQ10 suspension in oil, powder-filled hardshell capsules and powder-based tablets were tested along with Q-Gel using a daily dosage of 120 mg for three weeks. after three weeks the values were 1.37, 1.63 and 1.60 micrograms/mL for the first three products and 3.31 micrograms/mL for Q-Gel. I hope this information is useful. In basic terms Co Q10 is a safe product, the soft gel versions seem to be the ones to go for and if you take the Q gel version then i suspect you would need to reduce your dosage by quite a bit. Jamil |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by Jam on Feb 17th, 2009 at 4:00pm
Hi to those still interested!
I have produced a summary document on C0Q10 relevant to migraines with the information simplified and referenced to actual studies. I do not know if there is a way to upload this as a word file. So, anyone interested, let me know how it's done and it will happen! Jamil |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by mjmom on Feb 17th, 2009 at 5:19pm
Jamil,
I am not very good at all of that so I wouldn't even know how to tell you to get that info to us. I would be interested in the info though! Thanks so much for your help! Gretchen |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by dramaqueen on Feb 18th, 2009 at 1:33am
Hi Jamil
I have a question I'm wondering if adults can take coenzyme Q10? I am 23 and suffter from terrible mirgraines and I'm having my first surgery on Friday but the doctor doesn't know if the headaches will go away. I am just wondering if adults can take this right now my neurologist has me on topamax which I'm not sure is working becuase my migraines come 4 times a week. They are really painful and keep down sometimes up to a couple of days depending on how bad it gets. Thanks, Aimee |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by mjmom on Feb 18th, 2009 at 8:46am
HI Aimee,
I just wanted to let you know that I am thinking of you! I know how awful these headaches can be seeing my son suffering with them quite frequently. His neurologist just put him on the Topamax and we are keeping our fingers crossed that it helps him. I am sorry that it hasn't for you. Have you experienced any side effects from it? I have to believe that there is a med out there that will help. That is why I am so curious about he CoEQ10. It will be interesting to see if you can take it ( I would imagine you could since there are children on it ) and if it ultimately helps. I think that if the Topamax doesn't work for my son, then we will try the CoEQ10. I wish you painfree days and will keep y ou in my thoughts and prayers. Please keep us posted on how you are doing! Gretchen |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by Jam on Feb 18th, 2009 at 2:09pm
Hi there,
I am not a doctor so cannot advise anyone to take anything. I can do research however and I believe people should have access to the same information that influences / teaches health professionals to do the things they do. So, the evidence I have looked at on CoQ10 suggests the following: Around half of people (adults and children) who take it end up with their headache days reduced in half. The dosage they use is from 150-300mg for a 165lbs weight person. The side effects are for 3 in every 200 people who take 100 mg CoQ10 daily with rashes, nausea, and epigastric (upper abdominal) pain. For those taking 600 - 1200 mg daily 40% reported mild side effects, including headache, heartburn, fatigue, and increased involuntary movements. So for migraine the dosage limit would be 300 mg and the side effects affecting between 1.5% - 40% of patients. Things to note if you plan on taking CoQ10: It can lower your blood pressure - systolic blood pressure by up to 17 mm Hg and diastolic blood pressure by up to 10 mm Hg for 120 mg daily dose. Blood sugar: inconclusive evidence with slight lowering of blood sugar for 200mg dose daily. Weight loss: amongst obese people on a very calorie restricted diet taking 100 mg dose daily. Now i have the references for all this for those who need to check rather than take my word for it (cos everyone makes mistakes) but I can at this moment only email you the document. CoQ10 as a remedy has as good an effect as Topamax but with far less side effects. Did you know that a 100mg dosage of Topamax caused paresthesia in 51% of migraine sufferers? That is arm and leg numbness, pins and needles: symptoms which can easily be mistaken for TIA / stroke by MM sufferers. Rxlist.com also shows that 15% suffered from fatigue, 15% from anorexia, 13% from nausea, 11% from diarrhoea etc. There are other remedies out there: Paracetamol, Ibuprofen and Sumatriptan / Triptans are preferred by the medical profession. Triptans are a big no no for MM sufferers as they cause blood vessels to tighten up. All have side effects, a lot of which anyone can check on for themselves. I will make some efforts to bring other options to peoples mind on this including Vitamin B2, Magnesium, Feverfew and Butterbur. However, please note that the quality of evidence is important, dosage, side effects, interaction with other drugs, the patients own characteristics etc all play a part. It is not easy to work through all this for an average person but on the other hand it is difficult to overly trust someone else who may or may not do the right thing. Jamil |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by LisaH on Feb 18th, 2009 at 2:44pm
Jamil,
This is absolutely brillant research and I want to thank you personally for looking into all of this for us and, perhaps, providing some relief to many of us who suffer from chronic headaches. My neurologist would not allow me to take Topomax for all the reasons you stated but I was desperately looking for something, anything! I will now look further into CoQ10 for myself (and talk to my doctor). It gives me some hope! Thank you again! [smiley=bow.gif] Lisa |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by mjmom on Feb 18th, 2009 at 6:30pm
Jamil,
Thank you so VERY much for all of the info that you have provided re. use of CoQ10 with Migraine sufferers!! I too am so grateful to you for this (and I have to say, very impressed - you really know your stuff). I have a call into Matt's dr. and I will see if the CoQ10 may be a better option for Matt instead of the Topamax. I hate to see Matt have to deal with those side effects that it has on top of the HAs. Will have to keepyou posted. Gretchen |
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Title: Re: headaches and coenzyme Q10 or other treatments Post by Jam on Feb 19th, 2009 at 1:16pm
Gretchen / Lisa,
Thank you for the kind words; in our grief and hope for what we have to go through it kind of helps to see someone benefit, no matter how small that may be. I would like to point out that a conventional doctor may or may not be aware of CoQ10. The complementary medicine guide by Feltrow, used by some physicians is 10 years old. Likewise in the UK the Cochrane review for migraine medications for children has not been updated since 2002. The doctor-patient partnership is important for too many reasons to go through with right now. One aspect is the risk / benefit to be had from medication. Conventional medicine tends to have quicker results and more side effects; the opposite tends to be true of alternative treatments. However, some patients might be so happy to get rid of their problems as not to complain about other side effects, others would like to have a solution that might take time but with less worrying about other problems. A physician has to weigh up various factors and some might look at creative approaches such as combining both types of medication with lots of patient consultation and feedback to assess if things are working out. With this approach they could maximise the benefits and bring it on sooner whilst keeping a control on side effects. For example, a provider could look at halving the standard dose of Topamax and introducing three quarters of the dose of CoQ10 to see if it builds up well. If it works then they could lower the dosage of Topamax and eliminate it from the picture. It all boils down to the individuals preference and how their relationship with their healthcare provider works out. For me, just suggesting I use garlic for blood thinning and blood pressure lowering for my son on occasions rather than aspirin (which is known to irritate the stomach lining, long term effect on asthma, arthritis) caused huge arguments and lectures from nearly all the professionals I interacted with. Sometimes I feel there are a lot of egos that need massaging out there but I have to live with my son and see his problems so I cannot take the expert view all the time without checking what basis they are making their decisions on. Jamil |
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