Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 Nickienoo, Lamar here, Morning headaches are often associated with sleep apnea which can be a part of CMT. Another cause can be sinus problems not related to CMT. Since you are in England, you may want to print out from http://www.cmt.org.uk/coping.htm " It is an unfortunate fact that, on top of everything else, in a minority of cases, the diaphragm can be affected by CMT. In the majority of cases, even if the diaphragm is affected, we are not aware of it. No one breathes to the full capacity of their lungs anyway, unless you're an Olympic athlete. Most of us are only aware of a slight breathlessness after walking quickly, and that, more often than not, is down to an out of condition body generally, as much as any problem with lung function. Some people may have a problem sleeping - in which case lying flat doesn't help, so sleeping propped up or on your side may be all that is required. However, in rare cases, lung function becomes a major problem, and can manifest itself as severe headaches, particularly in the mornings. This is because at night, the breathing pattern changes to give deeper, slower breaths. If the lungs aren't functioning properly, this pattern is disrupted, resulting in carbon dioxide being retained in the body, hence the headaches. It is important to get this problem checked thoroughly by specialists. A sleep study in hospital can confirm what the problem is, and it can be cured by the use of certain drugs, which alter the sleep pattern and thereby eliminate the problem. Don't panic at this piece of new information. Major diaphragm weakness is very rare, and any problems caused by it can be quite easily sorted out. " ----- Original Message ----- From: nickienoo@... Sent: Wednesday, February 07, 2001 10:37 AM Subject: [] Headaches My wife Maggie (CMTer type 1)suffers with severe headaches which generally start as she opens her eyes in the mornings (unlike some non CMTers who apparently get them at bedtime!!!)LOL.Her specialist! who we are hoping to change says this could not be anything to do with her CMT.We have an appointment with our normally rude and indifferent local doctor in 20 hours time (we are in England)and would like to go armed with information about how headaches and CMT can be related and also how it can treated.Can anyone please help? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 Many thanks Lamar, Please keep any info and advice coming everyone, especially on the treatment.Thanks W. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 Could be related to sleep apnea. If any other symptoms are present such as loud snoring, restless sleep, waking up with an accelerated heartrate, persistent sinus problems, push the doctor for a sleep study. Sleep apnea has been tied to CMT, however many physicians now feel that 20% of the population suffers from some form of sleep apnea. Much higher than previously believed. Good luck, BC ----- Original Message ----- From: <nickienoo@...> < > Sent: Wednesday, February 07, 2001 7:37 AM Subject: [] Headaches > My wife Maggie (CMTer type 1)suffers with severe headaches which > generally start as she opens her eyes in the mornings (unlike some > non CMTers who apparently get them at bedtime!!!)LOL.Her specialist! > who we are hoping to change says this could not be anything to do > with her CMT.We have an appointment with our normally rude and > indifferent local doctor in 20 hours time (we are in England)and > would like to go armed with information about how headaches and CMT > can be related and also how it can treated.Can anyone please help? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 Tell Maggie I am sorry she has those horrible headaches. Until someone actually has one, they have no idea the agony and pain. I too have CMT, and I have migraine headaches. I am now 41 years old and have had migraine headaches since I was in my late teens. Now there are medicines available with a prescription for migraines. In the old days, one had to take injections that would put them so sleep for hours, which made it very difficult to work or function. I use Imitrex nasal spray. I feel relief for my headache within several minutes. It does not make you sleepy. There are numerous medications on the market now for migraine headache sufferers if that is what she has. I inherited my headaches from my father and his father (my grandfather) had them as well. Not CMT related because my mother and her side of the family are the ones with CMT. Good luck at the doctor. I hope they find something to help her with the headaches. ----- Original Message ----- From: <nickienoo@...> < > Sent: Wednesday, February 07, 2001 9:37 AM Subject: [] Headaches > My wife Maggie (CMTer type 1)suffers with severe headaches which > generally start as she opens her eyes in the mornings (unlike some > non CMTers who apparently get them at bedtime!!!)LOL.Her specialist! > who we are hoping to change says this could not be anything to do > with her CMT.We have an appointment with our normally rude and > indifferent local doctor in 20 hours time (we are in England)and > would like to go armed with information about how headaches and CMT > can be related and also how it can treated.Can anyone please help? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 I also have migraine and take Imitrex. I have the pills and the injections. As a rule the Imitrex works. When it doesn't I go in and get a shot of Demerol (sp) That will let me sleep and when I wake up hopefully the migraine is gone. They have a new drug that they call a loopy pop. When you have taken your migraine medical and it doesn't work you take the loopy pop and run it on the inside of your mouth and you get the pain killer right into the blood stream. You don't have to go in to the doctor for a pain shot. I feel sorry for anyone that has migraine. When you get the migraine you can't hardly function until it goes away. I tell people that now that I have found migraine I have a life. Good luck to you. Janice Hagadorn a > - S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 Have any of you migraine sufferers had testing done for food allergies? My mother had severe migraines from age 15 through age 47. She did not become menopausal until after her 52nd birthday, although over the years various doctors blamed the headaches on her menstrual cycle. She would be bed ridden for several days with nausea, light sensitivity and terrible pain. Had a bazillion tests run over the years, nothing worked until a friend who happened to be a nurse suggested keeping a journal of all food consumed, in relation to the onset of the headaches. After 3 months of doing this a pattern was clear. Any time she consumed hard cheese such as parmesan and also most foods containing sulfites the headaches showed up. After several conclusive tests, (consuming these foods followed by headaches) she eliminated the offending foods and the headaches ceased. She has been migraine free for the past 20 years by keeping a strict diet. BC ----- Original Message ----- From: Hagadorn, Janice D (NITC) <HAGADORNJD@...> < > Sent: Wednesday, February 07, 2001 10:31 AM Subject: RE: [] Headaches > I also have migraine and take Imitrex. I have the pills and the > injections. As a rule the Imitrex works. When it doesn't I go in and get a > shot of Demerol (sp) That will let me sleep and when I wake up hopefully > the migraine is gone. They have a new drug that they call a loopy pop. > When you have taken your migraine medical and it doesn't work you take the > loopy pop and run it on the inside of your mouth and you get the pain killer > right into the blood stream. You don't have to go in to the doctor for a > pain shot. I feel sorry for anyone that has migraine. When you get the > migraine you can't hardly function until it goes away. I tell people that > now that I have found migraine I have a life. > Good luck to you. > > Janice Hagadorn > > > a > > > > > > > > - > > S > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 In a message dated 2/7/2001 4:51:15 PM Pacific Standard Time, BILL@... writes: << Have any of you migraine sufferers had testing done for food allergies? >> I am allergic to Dr pepper. The headaches it gives me are so bad that I have to get a pain shot. I am out for days. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 Dick S. here I too have/had headaches. I went my entire life(now 42) having had less than ten headaches, other than hangovers they don't count. Three years ago they started. Every day. Some short blasts, some longer achy types and some like muscle tension. After 1 1/2 years of this my Dr.(same one who correctly diagnosed CMT) hit on the cure. Doxepim at night. Imitrex nasal spray for the cluster type. Knock on wood it works good! Good luck with yours. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 Hi Bill, As a migraine sufferer, yes there are certain foods to avoid (chocolate, smoked meats, wines, cheeses etc). I have taken allergy injections for numerous years. In my case, I am only allergic to inhalants (pollen, dust, various kinds of trees, grasses), I didn't test positive to any food allergies. It seems the older I get, the fewer migraine headaches I have. I have also noticed that having a sinus headache will sometimes throw me into having a migraine. I'm happy your mother doesn't have to suffer like she once did. ----- Original Message ----- From: Bill , Digitec Security <BILL@...> < > Sent: Wednesday, February 07, 2001 1:09 PM Subject: Re: [] Headaches > Have any of you migraine sufferers had testing done for food allergies? My > mother had severe migraines from age 15 through age 47. She did not become > menopausal until after her 52nd birthday, although over the years various > doctors blamed the headaches on her menstrual cycle. She would be bed > ridden for several days with nausea, light sensitivity and terrible pain. > Had a bazillion tests run over the years, nothing worked until a friend who > happened to be a nurse suggested keeping a journal of all food consumed, in > relation to the onset of the headaches. After 3 months of doing this a > pattern was clear. Any time she consumed hard cheese such as parmesan and > also most foods containing sulfites the headaches showed up. After several > conclusive tests, (consuming these foods followed by headaches) she > eliminated the offending foods and the headaches ceased. She has been > migraine free for the past 20 years by keeping a strict diet. > BC > ----- Original Message ----- > From: Hagadorn, Janice D (NITC) <HAGADORNJD@...> > < > > Sent: Wednesday, February 07, 2001 10:31 AM > Subject: RE: [] Headaches > > > > I also have migraine and take Imitrex. I have the pills and the > > injections. As a rule the Imitrex works. When it doesn't I go in and get > a > > shot of Demerol (sp) That will let me sleep and when I wake up hopefully > > the migraine is gone. They have a new drug that they call a loopy pop. > > When you have taken your migraine medical and it doesn't work you take the > > loopy pop and run it on the inside of your mouth and you get the pain > killer > > right into the blood stream. You don't have to go in to the doctor for a > > pain shot. I feel sorry for anyone that has migraine. When you get the > > migraine you can't hardly function until it goes away. I tell people that > > now that I have found migraine I have a life. > > Good luck to you. > > > > Janice Hagadorn > > > > > > a > > > > > > > > > > > > > > > - > > > > S > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 Have you ever tried Chiropratic treatments for you migranes. I used to get them all the time when I was younger and was able to be over them in 30 -45 min after a treatment. I had pinched nerves in my upper neck. I know a lot of you don't like chiro's but my family uses them all the time. Jane ----- Original Message ----- From: Hagadorn, Janice D (NITC) Sent: Wednesday, February 07, 2001 12:51 PM ' ' Subject: RE: [] Headaches I also have migraine and take Imitrex. I have the pills and the injections. As a rule the Imitrex works. When it doesn't I go in and get a shot of Demerol (sp) That will let me sleep and when I wake up hopefully the migraine is gone. They have a new drug that they call a loopy pop. When you have taken your migraine medical and it doesn't work you take the loopy pop and run it on the inside of your mouth and you get the pain killer right into the blood stream. You don't have to go in to the doctor for a pain shot. I feel sorry for anyone that has migraine. When you get the migraine you can't hardly function until it goes away. I tell people that now that I have found migraine I have a life. Good luck to you. Janice Hagadorn a > - S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 In a message dated 2/9/2001 5:27:40 PM Eastern Standard Time, eemarilee@... writes: << Novo-Propranolol " . I am very happy to say; I have not even had a slight head, never mind a migraine. Thank goodness for all the wonderful and supportive people in my world. At present; I wear my neck brace when ever I walk and sit in a chair that doesn't have head support. Laying down and sitting in my high back chair is a nice brake throughout the days and evenings. My neck muscles are fairly weak and can only support my head weight for a short time. Thanks for listening, Marilee >> Marilee I too have had headaches for years, mine start at the base of the neck, if they don't stop with ibuprofen or tylenol, I have to go to bed. I know what you go through. Even though I've had tremors all of my life, I never took anything until a year ago. Started taking propranolol, headaches are almost non existant now. I know that's what helped me. Still have lots of popping in my neck, and most days I can't hold my head to look straight ahead without it shaking. My head also favors the right side. By this, I mean it turns to the right. Being fitted for glasses several years ago, it was brought to my attention. Since then, I started looking at pictures, almost all of my pictures, my head is leaning or turning to the right. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 In a message dated 2/9/01 8:03:28 PM Eastern Standard Time, ktbugg54@... writes: << Still have lots of popping in my neck, >> Hi , Is the noise in your neck a pop or a crack sound. I have a crack sound every now and then that you can here for a city block. Mine is from arthritis and the doctor advised me to take one 81mg of aspirin a day to thin the blood so I would have better flow to the brain, and wipe that thought out of your mind " it didn't work " :-) E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 Hello All: Migraines; I was getting often, lately they have been coming more frequent. One weekend I had to call an ambulance, it was my fourth day of staying in the dark and sorry too say but vomiting as well. I was becoming very worried, since I was unable to keep anything down including my medication. Being unable to keep my epilepsy medicine down. If a major muscle spasms turned into a seizure. That would be so unkind for my son to witness and deal with, since it is just the two of us. After that; my Occupational Therapist, lent me a couple neck braces to wear. As well as my G.P. gave me a prescription for migraine prevention pills " Novo-Propranolol " . I am very happy to say; I have not even had a slight head, never mind a migraine. Thank goodness for all the wonderful and supportive people in my world. At present; I wear my neck brace when ever I walk and sit in a chair that doesn't have head support. Laying down and sitting in my high back chair is a nice brake throughout the days and evenings. My neck muscles are fairly weak and can only support my head weight for a short time. Thanks for listening, Marilee _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 -----Original Message----- From: Lee Edison <eemarilee@...> < > Date: Friday, February 09, 2001 4:24 PM Subject: Re: [] Headaches >Hello All: > > Migraines; I was getting often, lately they have been coming more >frequent. One weekend I had to call an ambulance, it was my fourth day of >staying in the dark and sorry too say but vomiting as well. I was becoming >very worried, since I was unable to keep anything down including my >medication. Being unable to keep my epilepsy medicine down. If a major >muscle spasms turned into a seizure. > >Thanks for listening, Marilee >>>>>Hi Marilee, I too have migrains that cause light sensitivity to eyes and vomit with them they get so bad, I have to rest my head/neck a lot too, in my recliner several times per day. Can you explain please what you mean by " if a major muscle spasm turned into a seizure " . A muscle spasm is one thing a seizure another. You confused me here, LOL, ~>Becky M. > >_________________________________________________________________________ >Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2001 Report Share Posted February 10, 2001 I would like to caution both of you and others. Though propranolol is a very good medication, some precautions are needed in it's use. Always check the pulse before taking it. If it is under 60/ min do NOT take it without a doctor's approval (it slows the heart beat and if it is too slow to start with it could be serious). Another thing to always remember--NEVER stop it all at once. If for any reason you need to stop it MUST be under supervision and tapered off. If a person has been on it for some time and suddenly stops the pulse and B/P will both increase and this can be to a potentially serious point. Deaths due to stopping it suddenly have been recorded. It is safe to stop it by slowly tapering it off. ----- Original Message ----- From: ktbugg54@... Sent: Friday, February 09, 2001 07:54 PM Subject: Re: [] Headaches In a message dated 2/9/2001 5:27:40 PM Eastern Standard Time, eemarilee@... writes: << Novo-Propranolol " . I am very happy to say; I have not even had a slight head, never mind a migraine. Thank goodness for all the wonderful and supportive people in my world. At present; I wear my neck brace when ever I walk and sit in a chair that doesn't have head support. Laying down and sitting in my high back chair is a nice brake throughout the days and evenings. My neck muscles are fairly weak and can only support my head weight for a short time. Thanks for listening, Marilee >> Marilee I too have had headaches for years, mine start at the base of the neck, if they don't stop with ibuprofen or tylenol, I have to go to bed. I know what you go through. Even though I've had tremors all of my life, I never took anything until a year ago. Started taking propranolol, headaches are almost non existant now. I know that's what helped me. Still have lots of popping in my neck, and most days I can't hold my head to look straight ahead without it shaking. My head also favors the right side. By this, I mean it turns to the right. Being fitted for glasses several years ago, it was brought to my attention. Since then, I started looking at pictures, almost all of my pictures, my head is leaning or turning to the right. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2001 Report Share Posted February 10, 2001 In a message dated 2/9/2001 10:09:54 PM Eastern Standard Time, jege6666@... writes: << Hi , Is the noise in your neck a pop or a crack sound. I have a crack sound every now and then that you can here for a city block. Mine is from arthritis and the doctor advised me to take one 81mg of aspirin a day to thin the blood so I would have better flow to the brain, and wipe that thought out of your mind " it didn't work " :-) E >> It pops , sounds like you can hear it for a city block. It started several years ago, had my head down working, when I looked up, it popped. It didn't hurt, kind of felt good. Lots of people go to chiropractors to get their neck popped. I can do it myself. Before I started propranolol, too much popping would trigger a headache. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2001 Report Share Posted February 10, 2001 In a message dated 2/9/2001 10:47:43 PM Eastern Standard Time, lls@... writes: << I would like to caution both of you and others. Though propranolol is a very good medication, some precautions are needed in it's use. Always check the pulse before taking it. If it is under 60/ min do NOT take it without a doctor's approval (it slows the heart beat and if it is too slow to start with it could be serious >> Thank Lamar, for your caring. It really is appreciated. I always ask questions before taking any medicine. I have a Drug Facts book that I use also. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 I grew up with migrane headaches from about the age of 5. My eyes were sensitive to light, noise bothered me and vomited as well. I found relief from chiropractic treatments. I haven't had one in several years. " Knock on Wood " Jane ----- Original Message ----- From: Maxwell Sent: Friday, February 09, 2001 8:28 PM Subject: Re: [] Headaches -----Original Message----- From: Lee Edison <eemarilee@...> < > Date: Friday, February 09, 2001 4:24 PM Subject: Re: [] Headaches >Hello All: > > Migraines; I was getting often, lately they have been coming more >frequent. One weekend I had to call an ambulance, it was my fourth day of >staying in the dark and sorry too say but vomiting as well. I was becoming >very worried, since I was unable to keep anything down including my >medication. Being unable to keep my epilepsy medicine down. If a major >muscle spasms turned into a seizure. > >Thanks for listening, Marilee > >_________________________________________________________________________ >Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2005 Report Share Posted October 1, 2005 Just like anything else Ron, headaches come and go. They can't be attributed to Xolair unless you had them immediately after the first shot. Pat --------------------------------- for Good Click here to donate to the Hurricane Katrina relief effort. Quote Link to comment Share on other sites More sharing options...
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