Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 I appreciate this group and your willingness to share information and support. I found a recent post about how strokes associated with mito migraines can manifest themselves particularly informative. For those of you all seeing mito docs or neurologists for the treatment of your headaches, has any mention been made regarding the best medication for mito migraines/headaches? Would it be different than what a regular neurologist would prescribe for routine non-mito headaches? Also, is it important to treat one of these mito headaches early in the pain cycle to prevent stroke-like episodes? Thanks for your feedback. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 I get severe headaches, but usually they are sinus related. They are incapacitating, and not necessarily asssociated with a sinus infection. I often get symptoms at the same time. Treatments that work sometimes for me are Breathe Right strips and Emergen-C vitamin C packets. I get severe rebound from Sudafed, even a children's dose. It's amazing, but the sinuses are so close to the brain, one has to be careful not to ignore the possibility that air pressure changes or allergies may affect the sinuses and therefore the brain. I have an anatomical defect of my sinuses that compounds the problems, although it was mostly addressed by surgery. I have also had a few severe headaches in my temple that have made me collapse, but have had MRI's done afterwards with no abnormalities show up. Take care, RH > I appreciate this group and your willingness to share information and > support. I found a recent post about how strokes associated with > mito migraines can manifest themselves particularly informative. > > For those of you all seeing mito docs or neurologists for the > treatment of your headaches, has any mention been made regarding the > best medication for mito migraines/headaches? Would it be different > than what a regular neurologist would prescribe for routine non- mito > headaches? Also, is it important to treat one of these mito headaches > early in the pain cycle to prevent stroke-like episodes? > > Thanks for your feedback. > Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 My mito doc has prescribed 400 mg of B2 (riboflavin) on a daily basis. After a few months, the frequency and intensity of our migraines have GREATLY been reduced. I used to have one at least once a month, and now only get one about once every six months. bodonnellotr wrote: >I appreciate this group and your willingness to share information and >support. I found a recent post about how strokes associated with >mito migraines can manifest themselves particularly informative. > >For those of you all seeing mito docs or neurologists for the >treatment of your headaches, has any mention been made regarding the >best medication for mito migraines/headaches? Would it be different >than what a regular neurologist would prescribe for routine non-mito >headaches? Also, is it important to treat one of these mito headaches >early in the pain cycle to prevent stroke-like episodes? > >Thanks for your feedback. >Beth > > > > > >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 July 18, 2004 Report Share Posted July 18, 2004 I'm glad to hear this, . Ribo does good things for me but does not help my migraines. I wish it did! There certainly is good research supporting the use of riboflavin for migraines. For Beth, also wanted to add that in my case, migraines do not lead to stroke-like events. I have both, but they are not linked. As always, mito can vary widely from individual to individual. Take care, Barbara > > >I appreciate this group and your willingness to share information and > >support. I found a recent post about how strokes associated with > >mito migraines can manifest themselves particularly informative. > > > >For those of you all seeing mito docs or neurologists for the > >treatment of your headaches, has any mention been made regarding the > >best medication for mito migraines/headaches? Would it be different > >than what a regular neurologist would prescribe for routine non- mito > >headaches? Also, is it important to treat one of these mito headaches > >early in the pain cycle to prevent stroke-like episodes? > > > >Thanks for your feedback. > >Beth > > > > > > > > > > > >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 July 18, 2004 Report Share Posted July 18, 2004 Beth I, too, take the B2 which has helped a great deal. My son with mito has had severe migraine problems for years - everything from one sided, two sided, cyclic and addominal. He has been hospitalized in a special hospital wing for several weeks on three different occasions. This program includes an educational component. One thing we learned is that every headache that doesn't go away in a 1/2 hour should be treated in some way. The earlier it is treated, the less severe it will be and the less often you have a migraine, the less likely you will continue to have them. Something like Motrin or Aleve is recommended for folks with mito - not Tylenol or aspirin. They should not be taken for more than 3 days out of 7 as it will cause rebound migraines (kind of like the coffee headaches people get when trying to eliminate coffee from diet). If this doesn't control them, then preventative medications should probably be tried. These are things like anti-convulsants and anti-depressants and blood pressure meds. The head pain clinic would prescribe low doses of two or three things at one time instead of higher doses. Ice behind the neck can be helpful for some. There is a list of foods to avoid to try to eliminate food triggered migraines. Once my son had been off them for several years, he has introduced some at various times to see if they are a problem. For him, additives are a big trigger, as is bright sun and certain odors. I hope this helps a bit. There is also a list of some of the meds used by the head pain clinic on the web site. laurie > > Reply-To: > Date: Sun, 18 Jul 2004 16:38:43 -0000 > To: > Subject: migraines + treatment > > I appreciate this group and your willingness to share information and > support. I found a recent post about how strokes associated with > mito migraines can manifest themselves particularly informative. > > For those of you all seeing mito docs or neurologists for the > treatment of your headaches, has any mention been made regarding the > best medication for mito migraines/headaches? Would it be different > than what a regular neurologist would prescribe for routine non-mito > headaches? Also, is it important to treat one of these mito headaches > early in the pain cycle to prevent stroke-like episodes? > > Thanks for your feedback. > Beth > > > > > 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 July 18, 2004 Report Share Posted July 18, 2004 Beth, I too suffer with terrible Headaches and SLEs, although they don't always happen at the same time. I have discussed this with Dr. Cohen at one of my appts and he also recommended Riboflavin. He increased my dosage in hopes that it would reduce the number of headaches I was having per month. I was having about 2 per week and it was absolutely awful!!!! I never knew where or when I was going to be " hit " with pain that could actually make me unable to function. I worried all the time that I would be down for the count with a headache and one of my kids would need my care. I have 3 children, 2 boys who are also affected with mito and a daughter who is adopted and healthy. When I saw Dr. Coehn at CCF last Spring, he arranged for me to see a Headache Specialist named Dr. kunkel. Dr. Kunkel started me on muscle relaxers and gave me as script for pain meds to use when needed. He did check it all out with Dr. Cohen to be sure it was all Mito Friendly :-) I really appreciated that he went the extra mile to clear it with Dr.Cohen. It might not hurt to look into a university Center where there is a Headache Clinic and Specialists. If you need anymore info about CCFs Dept email me. Good Luck and feel well, > Beth > > I, too, take the B2 which has helped a great deal. My son with mito has had > severe migraine problems for years - everything from one sided, two sided, > cyclic and addominal. He has been hospitalized in a special hospital wing > for several weeks on three different occasions. This program includes an > educational component. > > One thing we learned is that every headache that doesn't go away in a 1/2 > hour should be treated in some way. The earlier it is treated, the less > severe it will be and the less often you have a migraine, the less likely > you will continue to have them. > > Something like Motrin or Aleve is recommended for folks with mito - not > Tylenol or aspirin. They should not be taken for more than 3 days out of 7 > as it will cause rebound migraines (kind of like the coffee headaches people > get when trying to eliminate coffee from diet). If this doesn't control > them, then preventative medications should probably be tried. These are > things like anti-convulsants and anti-depressants and blood pressure meds. > The head pain clinic would prescribe low doses of two or three things at one > time instead of higher doses. > > Ice behind the neck can be helpful for some. There is a list of foods to > avoid to try to eliminate food triggered migraines. Once my son had been off > them for several years, he has introduced some at various times to see if > they are a problem. For him, additives are a big trigger, as is bright sun > and certain odors. > > I hope this helps a bit. There is also a list of some of the meds used by > the head pain clinic on the web site. > > laurie > > > From: " bodonnellotr " > > Reply-To: > > Date: Sun, 18 Jul 2004 16:38:43 -0000 > > To: > > Subject: migraines + treatment > > > > I appreciate this group and your willingness to share information and > > support. I found a recent post about how strokes associated with > > mito migraines can manifest themselves particularly informative. > > > > For those of you all seeing mito docs or neurologists for the > > treatment of your headaches, has any mention been made regarding the > > best medication for mito migraines/headaches? Would it be different > > than what a regular neurologist would prescribe for routine non- mito > > headaches? Also, is it important to treat one of these mito headaches > > early in the pain cycle to prevent stroke-like episodes? > > > > Thanks for your feedback. > > Beth > > > > > > > > > > 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 July 18, 2004 Report Share Posted July 18, 2004 Beth There is an accreditation that facilities can get for headache clinics that meet the criteria. I will see if I can locate the list on line and then post it. I think I can find it by going to our head-pain clinic site. They were the first in the world to be accredited. laurie > > Reply-To: > Date: Sun, 18 Jul 2004 23:33:46 -0000 > To: > Subject: Re: migraines + treatment > > > Beth, > I too suffer with terrible Headaches and SLEs, although they don't > always happen at the same time. I have discussed this with Dr. Cohen > at one of my appts and he also recommended Riboflavin. He increased > my dosage in hopes that it would reduce the number of headaches I was > having per month. I was having about 2 per week and it was absolutely > awful!!!! I never knew where or when I was going to be " hit " with > pain that could actually make me unable to function. I worried all > the time that I would be down for the count with a headache and one > of my kids would need my care. I have 3 children, 2 boys who are > also affected with mito and a daughter who is adopted and healthy. > > When I saw Dr. Coehn at CCF last Spring, he arranged for me to see a > Headache Specialist named Dr. kunkel. Dr. Kunkel started me on > muscle relaxers and gave me as script for pain meds to use when > needed. He did check it all out with Dr. Cohen to be sure it was all > Mito Friendly :-) I really appreciated that he went the extra mile > to clear it with Dr.Cohen. > > It might not hurt to look into a university Center where there is a > Headache Clinic and Specialists. If you need anymore info about CCFs > Dept email me. > > Good Luck and feel well, > > > > > > > > > > > >> Beth >> >> I, too, take the B2 which has helped a great deal. My son with mito > has had >> severe migraine problems for years - everything from one sided, two > sided, >> cyclic and addominal. He has been hospitalized in a special > hospital wing >> for several weeks on three different occasions. This program > includes an >> educational component. >> >> One thing we learned is that every headache that doesn't go away in > a 1/2 >> hour should be treated in some way. The earlier it is treated, the > less >> severe it will be and the less often you have a migraine, the less > likely >> you will continue to have them. >> >> Something like Motrin or Aleve is recommended for folks with mito - > not >> Tylenol or aspirin. They should not be taken for more than 3 days > out of 7 >> as it will cause rebound migraines (kind of like the coffee > headaches people >> get when trying to eliminate coffee from diet). If this doesn't > control >> them, then preventative medications should probably be tried. These > are >> things like anti-convulsants and anti-depressants and blood > pressure meds. >> The head pain clinic would prescribe low doses of two or three > things at one >> time instead of higher doses. >> >> Ice behind the neck can be helpful for some. There is a list of > foods to >> avoid to try to eliminate food triggered migraines. Once my son had > been off >> them for several years, he has introduced some at various times to > see if >> they are a problem. For him, additives are a big trigger, as is > bright sun >> and certain odors. >> >> I hope this helps a bit. There is also a list of some of the meds > used by >> the head pain clinic on the web site. >> >> laurie >> >>> From: " bodonnellotr " >>> Reply-To: >>> Date: Sun, 18 Jul 2004 16:38:43 -0000 >>> To: >>> Subject: migraines + treatment >>> >>> I appreciate this group and your willingness to share information > and >>> support. I found a recent post about how strokes associated with >>> mito migraines can manifest themselves particularly informative. >>> >>> For those of you all seeing mito docs or neurologists for the >>> treatment of your headaches, has any mention been made regarding > the >>> best medication for mito migraines/headaches? Would it be > different >>> than what a regular neurologist would prescribe for routine non- > mito >>> headaches? Also, is it important to treat one of these mito > headaches >>> early in the pain cycle to prevent stroke-like episodes? >>> >>> Thanks for your feedback. >>> Beth >>> >>> >>> >>> >>> 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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