Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 a Taking any pain killer more than 3 days within any 7 can cause rebound headaches, so a preventative is recommended. For what it is worth, my son with mito didn't respond to the ergots to break a long standing migraine. The hospital headache unit usually gives IV ergot to break the headache, so they can start trying to find the combination of meds as a preventative. They had to give him IV prednisone to break it. Once broken, they had to ramp all other meds very slowly. The first stay in the headpain unit was 3 weeks. He had some autonomic problems when they tried upping the dose rapidly as they usually do. laurie > Barbara, > I am going though issues with migraines and headaches with the > SLE's right now. My neurologist is confused, as we can't break it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 a Taking any pain killer more than 3 days within any 7 can cause rebound headaches, so a preventative is recommended. For what it is worth, my son with mito didn't respond to the ergots to break a long standing migraine. The hospital headache unit usually gives IV ergot to break the headache, so they can start trying to find the combination of meds as a preventative. They had to give him IV prednisone to break it. Once broken, they had to ramp all other meds very slowly. The first stay in the headpain unit was 3 weeks. He had some autonomic problems when they tried upping the dose rapidly as they usually do. laurie > Barbara, > I am going though issues with migraines and headaches with the > SLE's right now. My neurologist is confused, as we can't break it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 Barbara, It was interesting to see that you get a droop on the left side of your face with a bad migraine. I get the droop on the right side of my face and it has always confused doctors. They just think I am tired. :-) I have migraines without SLE's, but lately have been going through a cycle of headaches, not like my migraines, but with SLE's. I was in the hospital for 23 days in August due to this. As I said in another post, Neurontin does help my headaches and has been a good preventative up until now. It still has prevented the one type of migraine I get. I was first put on this for the neuropathy, but found that it helped the migraines as well. Two for one deal. :-) As for the Midrin, I can take up to the 5 doses a day, but if I do, I am not much use the next day at all. I was told I can take 1-2 capsules at first and then one every hour up to 5 capsules. I did try this during the hospital stay to make sure I didn't have any other difficulties with it. I tend to have to take low doses of most medications, so I normally do not take the five. I hope something can be done to help! Smiles, a On Thu, 22 Sep 2005 08:10:14 -0500 " Barbara Seaman " wheatchild@...> writes: Hi a, Good to see your trademark smiles, in spite of all the migraines. Thanks for the post. It is SO reassuring to talk to someone who has similar issues and been through similar drug trials. My headaches and migraines seem to be independent of my SLEs, though I can get a droop on the left side of my face with a really bad migraine. But I never have migraine and garbled speech simultaneously, thank goodness. I am glad to hear you get help from Midrin. I am very hopeful it will help me too. Time will tell. Do you need more than one dose to get results? My neuro said I could take one every 2 hours, up to 5 a day. Yes, the triptans are vaso-constrictors which is why no one wants to give them to me. And it does help to hear about your experience with Topamax. I sure hope your neuro can come up with some relief for you! Blessings! Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 Laurie, Thanks for the reminder and your post. We have been really careful to try to avoid rebound headaches. During my August hospital stay, we tried many various treatments to get rid of the headache. We did do the IV prednisone treatment which was the best, but we could not break the headache completely. How many days did they do the prednisone for? My neuro would not go more than 3 days on the steroids at a time, so the headache would be close to breaking, but then get worse again. I have been on migraine preventative medication for years. Obviously, it isn't working at this point. :-) We did up my Neurontin, as that has really helped my headache, but I don't think it will help this time until this one is broken. Smiles, a On Thu, 22 Sep 2005 10:18:19 -0400 Laurie Fitzgerald laurie.fitzgerald@...> writes: a Taking any pain killer more than 3 days within any 7 can cause rebound headaches, so a preventative is recommended. They had to give him IV prednisone to break it. Once broken, they had to ramp all other meds very slowly. The first stay in the headpain unit was 3 weeks. laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 a, Sorry you've been in the hospital so much. Not fun. About the droop, my neuro said that it's known to be associated with migraines. I had thought this was probably a mito reaction, but he said it can happen in migraines, aside from any other neurological problem. He treats many migraine patients, so I expect he is right. My headaches are left sided so its the left eyebrow, eyelid, etc. that droop noticeably. Thanks for the details on Midrin. Take care, Barbara > Re: Topamax for migraines > > Barbara, > It was interesting to see that you get a droop on the left side > of your face with a bad migraine. I get the droop on the right side of > my face and it has always confused doctors. They just think I am tired. > :-) I have migraines without SLE's, but lately have been going through a > cycle of headaches, not like my migraines, but with SLE's. I was in the > hospital for 23 days in August due to this. As I said in another post, > Neurontin does help my headaches and has been a good preventative up > until now. It still has prevented the one type of migraine I get. I was > first put on this for the neuropathy, but found that it helped the > migraines as well. Two for one deal. :-) > As for the Midrin, I can take up to the 5 doses a day, but if I > do, I am not much use the next day at all. I was told I can take 1-2 > capsules at first and then one every hour up to 5 capsules. I did try > this during the hospital stay to make sure I didn't have any other > difficulties with it. I tend to have to take low doses of most > medications, so I normally do not take the five. > I hope something can be done to help! > > Smiles, > a > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 --- ohgminion rakshasis@...> wrote: > > Has sleep issues that aggrivate the headache but > sleeping pills > > didn't work well at all. > > Has he had a sleep study and follow-up? His sleep study found RLS. FIghting with insurance for another sleep study. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 a I looked up the records I have from my son's migraine hospitalizations. He has many of them. His first admittance in the headpain unit (after 6 months of non-stop migraine), he was on IV prednisone for 6-1/2 days as he was admitted late in the day. The next two times, he only needed it for 3 days as they were caught earlier. They said he is one of the harder patients to fix, although they didn't need to detox him from heavy duty pain meds or toxic levels of over the counter meds. Finding a good combination of meds for prevention was the real problem. He was lucky to be in the first headpain unit is the world. People still come from all over the world to see Dr. Saper. He was the only headpain doc for several years, so he has lots of experience. laurie > Laurie, > Thanks for the reminder and your post. We have been really > careful to try to avoid rebound headaches. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 Barbara I have totally lost my vision with migraines. Scary, but not permanent. laurie > a, Sorry you've been in the hospital so much. Not fun. About the > droop, my neuro said that it's known to be associated with migraines. I had > thought this was probably a mito reaction, but he said it can happen in > migraines, aside from any other neurological problem. He treats many > migraine patients, so I expect he is right. My headaches are left sided so > its the left eyebrow, eyelid, etc. that droop noticeably. Thanks for the > details on Midrin. > > Take care, > Barbara > > > Re: Topamax for migraines > > > > Barbara, > > It was interesting to see that you get a droop on the left side > > of your face with a bad migraine. I get the droop on the right side of > > my face and it has always confused doctors. They just think I am tired. > > :-) I have migraines without SLE's, but lately have been going through a > > cycle of headaches, not like my migraines, but with SLE's. I was in the > > hospital for 23 days in August due to this. As I said in another post, > > Neurontin does help my headaches and has been a good preventative up > > until now. It still has prevented the one type of migraine I get. I was > > first put on this for the neuropathy, but found that it helped the > > migraines as well. Two for one deal. :-) > > As for the Midrin, I can take up to the 5 doses a day, but if I > > do, I am not much use the next day at all. I was told I can take 1-2 > > capsules at first and then one every hour up to 5 capsules. I did try > > this during the hospital stay to make sure I didn't have any other > > difficulties with it. I tend to have to take low doses of most > > medications, so I normally do not take the five. > > I hope something can be done to help! > > > > Smiles, > > a > > > > > > > > > > > > > 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 September 22, 2005 Report Share Posted September 22, 2005 Wow, that is scary! B > Re: Topamax for migraines > > Barbara > > I have totally lost my vision with migraines. Scary, but not permanent. > > laurie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 Hey, my daughter will be 16 this Halloween! Van Verst wrote: >--- dgregori dgregori@...> wrote: > > > >>How old is he? I don't recall. >> >> >> > >He's 16. He'll be 17 in October. > > > >Mom to the two best kids in the world! >http://www.caringbridge.org/visit/thomasandkatie > > > >__________________________________ >Yahoo! Mail - PC Magazine Editors' Choice 2005 >http://mail.yahoo.com > > > > > >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 September 22, 2005 Report Share Posted September 22, 2005 I'm sorry it didn't seem to help your headaches. How is your recovery going after your gamma knife surgery? Barbara Seaman wrote: >I was on 400 mg for 6 months. > >B > > > >> Re: Topamax for migraines >> >>Barbara, >> >>I'm assuming you are either already taking B2 (400mg) daily already or >>have at least tried it for 3 or 4 months to see if it helps with the >>frequency and intensity. It has been a like a miracle for my daughter >>and myself. I get full blown migraines so seldom now, I am really >>surprised when I get one. >> >> >> >> > > > > > >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 September 22, 2005 Report Share Posted September 22, 2005 I have declared myself Officially Recovered! We won't know for a few more months whether it halted growth of the tumor, but I am very hopeful. Thanks! Barbara > Re: Topamax for migraines > > I'm sorry it didn't seem to help your headaches. How is your recovery > going after your gamma knife surgery? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 My daughter, almost 16 has had this happen too on a few occasions. Barbara Seaman wrote: >Wow, that is scary! > >B > > > >> Re: Topamax for migraines >> >>Barbara >> >>I have totally lost my vision with migraines. Scary, but not permanent. >> >>laurie >> >> >> > > > > > >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 September 22, 2005 Report Share Posted September 22, 2005 This is great Barbara. What we feel in our recovery of things is just as important if not more so than what the docs think anyway. Fingers are crossed that the growth has stopped for good!!! Barbara Seaman wrote: >I have declared myself Officially Recovered! We won't know for a few more >months whether it halted growth of the tumor, but I am very hopeful. Thanks! > >Barbara > > > >> Re: Topamax for migraines >> >>I'm sorry it didn't seem to help your headaches. How is your recovery >>going after your gamma knife surgery? >> >> >> >> > > > > > >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 September 22, 2005 Report Share Posted September 22, 2005 --- dgregori dgregori@...> wrote: > Hey, my daughter will be 16 this Halloween! > I'm so sorry. Aren't teens such a joy? He'll be 17 October 20. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 --- dgregori dgregori@...> wrote: > Hey, my daughter will be 16 this Halloween! > I'm so sorry. Aren't teens such a joy? He'll be 17 October 20. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 Hi Laurie, Were you screened for temporal arteritis? I didn't know migraines could cause temporary blindness, I thought they only cause " visual disturbances (flashing lights, blurry vision and the like). I just get a sharp pain in my right temple, sometimes I collapse from it, sometimes I don't. It isn't the pain that makes me collapse, something else is going on (pain level is the same whether I collapse or not). Take care, RH > > a, Sorry you've been in the hospital so much. Not fun. About the > > droop, my neuro said that it's known to be associated with migraines. I had > > thought this was probably a mito reaction, but he said it can happen in > > migraines, aside from any other neurological problem. He treats many > > migraine patients, so I expect he is right. My headaches are left sided so > > its the left eyebrow, eyelid, etc. that droop noticeably. Thanks for the > > details on Midrin. > > > > Take care, > > Barbara > > > > > Re: Topamax for migraines > > > > > > Barbara, > > > It was interesting to see that you get a droop on the left side > > > of your face with a bad migraine. I get the droop on the right side of > > > my face and it has always confused doctors. They just think I am tired. > > > :-) I have migraines without SLE's, but lately have been going through a > > > cycle of headaches, not like my migraines, but with SLE's. I was in the > > > hospital for 23 days in August due to this. As I said in another post, > > > Neurontin does help my headaches and has been a good preventative up > > > until now. It still has prevented the one type of migraine I get. I was > > > first put on this for the neuropathy, but found that it helped the > > > migraines as well. Two for one deal. :-) > > > As for the Midrin, I can take up to the 5 doses a day, but if I > > > do, I am not much use the next day at all. I was told I can take 1-2 > > > capsules at first and then one every hour up to 5 capsules. I did try > > > this during the hospital stay to make sure I didn't have any other > > > difficulties with it. I tend to have to take low doses of most > > > medications, so I normally do not take the five. > > > I hope something can be done to help! > > > > > > Smiles, > > > a > > > > > > > > > > > > > > > > > > > > > > > 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 September 22, 2005 Report Share Posted September 22, 2005 RH I was checked for temporal arteritis as my dad has this and polymyogia rhumatica. Both my neuro and eye doc said it was most likely a migraine. Later, each time, I did get a migraine, but didn't have one at the time. laurie > Hi Laurie, > > Were you screened for temporal arteritis? I didn't know migraines > could cause temporary blindness, I thought they only cause " visual > disturbances (flashing lights, blurry vision and the like). > > I just get a sharp pain in my right temple, sometimes I collapse from > it, sometimes I don't. It isn't the pain that makes me collapse, > something else is going on (pain level is the same whether I collapse > or not). > > Take care, > RH > > > > > a, Sorry you've been in the hospital so much. Not fun. > About the > > > droop, my neuro said that it's known to be associated with > migraines. I had > > > thought this was probably a mito reaction, but he said it can > happen in > > > migraines, aside from any other neurological problem. He treats > many > > > migraine patients, so I expect he is right. My headaches are left > sided so > > > its the left eyebrow, eyelid, etc. that droop noticeably. Thanks > for the > > > details on Midrin. > > > > > > Take care, > > > Barbara > > > > > > > Re: Topamax for migraines > > > > > > > > Barbara, > > > > It was interesting to see that you get a droop on the > left side > > > > of your face with a bad migraine. I get the droop on the right > side of > > > > my face and it has always confused doctors. They just think I > am tired. > > > > :-) I have migraines without SLE's, but lately have been going > through a > > > > cycle of headaches, not like my migraines, but with SLE's. I > was in the > > > > hospital for 23 days in August due to this. As I said in > another post, > > > > Neurontin does help my headaches and has been a good > preventative up > > > > until now. It still has prevented the one type of migraine I > get. I was > > > > first put on this for the neuropathy, but found that it helped > the > > > > migraines as well. Two for one deal. :-) > > > > As for the Midrin, I can take up to the 5 doses a day, > but if I > > > > do, I am not much use the next day at all. I was told I can > take 1-2 > > > > capsules at first and then one every hour up to 5 capsules. I > did try > > > > this during the hospital stay to make sure I didn't have any > other > > > > difficulties with it. I tend to have to take low doses of most > > > > medications, so I normally do not take the five. > > > > I hope something can be done to help! > > > > > > > > Smiles, > > > > a > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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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