Guest guest Posted April 20, 2011 Report Share Posted April 20, 2011 Hi everyone, Ari's pediatrician called yesterday evening and patiently listened to everything I told her. Let me preface this by saying that I really like this doctor, and we have a good relationship. She is very attentive and always makes follow-up calls to check on the kids, etc. That said, she feels that this head pain is unrelated to Chiari and is the beginning of migraines for Ariana. She is aware of the more or less intractable state of my migraine status, and she said with my history and my mother's, and with Ari getting close to puberty, it is likely that she is starting to develop them. I told her yes, I am a migraine pain expert, and I've never experienced or heard of migraine pain lasting for two minutes and then going away and coming back in cycles. Yes, the pain might be more or less throbbing at different times during an attack but not like what she's describing. And by definition a migraine has to be unilateral, which is not what she's experiencing. She also doesn't have nausea. She does complain of noise bothering her when it's happening, but I would imaging noise would be bothersome with any kind of headache. But the doctor said this is how migraines can start. She said she could also have strained neck muscles and wants me to bring her in to teach her neck and shoulder stretches. She suggested giving her Excederin Migraine (which is exactly the same thing as regular Excederin and is just Tylenol, Aspirin, and caffeine). So, I'm taking her in at 4:45 today, but that's her take on it. As for the head nodding and blinking, she said it does sound like a tic, but that's all she really said about it. Maybe we'll talk more about that today. Sigh. Thanks, Beth Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2011 Report Share Posted April 21, 2011 Hi, I'm not sure if my other post went through or not, but as I stated in that one, I had these mini headaches that you describe that your daughter has. They are excruciatingly painful!! They only lasted 2 -5 minutes but I had noticed that I would have them when I coughed, laughed, bent over, ran, holding my breath etc. and I was told that they were migraines or a lack of oxygen to my brain. I was told they were migraines since I was little (now I'm 48) and then in 2008 my primary care dr said it was a lack of oxygen and I asked what I should do about it and he said " keep breathing " boy did that infuriate me lol When I had the head pains it would take my breath away and would sometimes make my eyes roll up into my head. Once I was finally diagnosed with Chiari in December 2008 (through MRI; 23.4mm) and had decompression surgery March 2009 these lil headaches (so called Migraines) went away and I haven't had them since. My ENT dr. stated it sounded like exertion headaches brought on by the things I mentioned above. I feel for your daughter and know that if its the same thing I experienced, its painful and I didn't believe it was migranes back then and now I know they weren't. The thing is, no medicine stopped them from happening to me and then I got a seriously bad cold and coughed non-stop for days and the pain I went through was horrible and that was the start of a spiral down hill from there (that was June 2008) I then had all kinds of symptoms worse then what I had been going through since childhood and then finally had an MRI ordered for my sinuses which then showed my chiari.......I wish your daughter well and if they continue please please please push to get the drs. to check further as it could be Chiari related. :-) decompressed, c1 laminectomy and duraplasty March 2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2011 Report Share Posted April 21, 2011 Hi Beth and everyone. . . I have to agree with Sally R on this one. This year is my 10-year anniversary on my new life with Chiari, tethered cord and now, craniocervical instability. I started having symptoms in January 2001 and didn't find out anything until Jan 2002 and that was pretty fast. Of course, my first NSG told me that I was cured when he performed the surgery (decompression) but unfortunately, I found out later through research that it's not cured but managed and surgery is a part of that management. I am in the process of treating the craniocervical instability now. I am in the " conservative treatment " process now. It's exhhausting work but I'm hoping it's all I'll need. Beth, I would always be concerned if someone with that authority was so determined in his treatment plan. Even if he is world-renowned NSG and the peds doctor listens, it doesn't mean that they " get " or " understand " the process of Chiari. I have come to believe that only the doctors that study and deal with Chiari everyday would view your daughter's situation in a different light. It is so worth researching out a specialist for your daughter in Chiari. They are hard to find but they do exist. I wish you and your daughter the best. And will pray for you as well! WY. . decompressed (2002), detethered (2006), CCI (2011) and Vit D deficiency (2011) > > Hi everyone, > > Ari's pediatrician called yesterday evening and patiently listened to everything I told her. Let me preface this by saying that I really like this doctor, and we have a good relationship. She is very attentive and always makes follow-up calls to check on the kids, etc. That said, she feels that this head pain is unrelated to Chiari and is the beginning of migraines for Ariana. She is aware of the more or less intractable state of my migraine status, and she said with my history and my mother's, and with Ari getting close to puberty, it is likely that she is starting to develop them. I told her yes, I am a migraine pain expert, and I've never experienced or heard of migraine pain lasting for two minutes and then going away and coming back in cycles. Yes, the pain might be more or less throbbing at different times during an attack but not like what she's describing. And by definition a migraine has to be unilateral, which is not what she's experiencing. She also doesn't have nausea. She does complain of noise bothering her when it's happening, but I would imaging noise would be bothersome with any kind of headache. But the doctor said this is how migraines can start. She said she could also have strained neck muscles and wants me to bring her in to teach her neck and shoulder stretches. She suggested giving her Excederin Migraine (which is exactly the same thing as regular Excederin and is just Tylenol, Aspirin, and caffeine). So, I'm taking her in at 4:45 today, but that's her take on it. As for the head nodding and blinking, she said it does sound like a tic, but that's all she really said about it. Maybe we'll talk more about that today. Sigh. > > Thanks, > > Beth > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 I have had migraines all my life. My migraines started just before my adolescence I had 12 years all. I had just a right frontal lobe pain. I had my period at 12 but it never came back again until they put me hormones at 16th. Migraines improve with hormones but nevertheless I had them all my life. I took very different kind of medicines for them in my life. In all this story I have learned two things: 1. There is an article about migraines and Chiari in the Conquer Chiari page that says that the onset of migraines in Chiari patients is earlier than the rest of the population, this is that migraines starts early in Chiari patients particularly at 12 years old: http://www.conquerchiari.org/subs%20only/Volume%206/Issue%206%284%29/Chiari% 20 & %20Migraines%206%284%29.asp 2. After I had my surgery for the lumbar valve my migraines disappeared, I have not taken a migraine medicine since then and even though I just have a month and half since surgery I use to take migraines medicines very very often. One thing that in my case was obvious was that my left tonsil is more descended than the right tonsil, curiously my migraine, papilledema, and neck pain are worst in the right side than in the left side, and all these improve with my decompression surgery. My theory is that migraines are worst in one side because CSF circulation is not the same for both hemispheres when you have Chiari as always there is one tonsil more descended than the other. In the Chiari Institute web page there is information about this also. Because of these I really think there is a relationship between Chiari and migraines, and also that there is a relationship between Chiari and CSF intracraneal pressure, so if you gave her Excedrin remember that it has a lot of caffeine, this means it could help the headache or it could make it worst as caffeine increases the production of CSF, any medicine with caffeine could harm her or help her, depends on what she has: low or high intracraneal pressure. At the beginning of the migraines when I was young caffeine help, it did for years, but when high intracraneal pressure started and it does not. So please be careful. Mex Date: Wed, 20 Apr 2011 23:47:51 -0000 To: < > Subject: Re: Pedi call re: Ari Hi Beth and everyone. . . I have to agree with Sally R on this one. This year is my 10-year anniversary on my new life with Chiari, tethered cord and now, craniocervical instability. I started having symptoms in January 2001 and didn't find out anything until Jan 2002 and that was pretty fast. Of course, my first NSG told me that I was cured when he performed the surgery (decompression) but unfortunately, I found out later through research that it's not cured but managed and surgery is a part of that management. I am in the process of treating the craniocervical instability now. I am in the " conservative treatment " process now. It's exhhausting work but I'm hoping it's all I'll need. Beth, I would always be concerned if someone with that authority was so determined in his treatment plan. Even if he is world-renowned NSG and the peds doctor listens, it doesn't mean that they " get " or " understand " the process of Chiari. I have come to believe that only the doctors that study and deal with Chiari everyday would view your daughter's situation in a different light. It is so worth researching out a specialist for your daughter in Chiari. They are hard to find but they do exist. I wish you and your daughter the best. And will pray for you as well! WY. . decompressed (2002), detethered (2006), CCI (2011) and Vit D deficiency (2011) > > Hi everyone, > > Ari's pediatrician called yesterday evening and patiently listened to everything I told her. Let me preface this by saying that I really like this doctor, and we have a good relationship. She is very attentive and always makes follow-up calls to check on the kids, etc. That said, she feels that this head pain is unrelated to Chiari and is the beginning of migraines for Ariana. She is aware of the more or less intractable state of my migraine status, and she said with my history and my mother's, and with Ari getting close to puberty, it is likely that she is starting to develop them. I told her yes, I am a migraine pain expert, and I've never experienced or heard of migraine pain lasting for two minutes and then going away and coming back in cycles. Yes, the pain might be more or less throbbing at different times during an attack but not like what she's describing. And by definition a migraine has to be unilateral, which is not what she's experiencing. She also doesn't have nausea. She does complain of noise bothering her when it's happening, but I would imaging noise would be bothersome with any kind of headache. But the doctor said this is how migraines can start. She said she could also have strained neck muscles and wants me to bring her in to teach her neck and shoulder stretches. She suggested giving her Excederin Migraine (which is exactly the same thing as regular Excederin and is just Tylenol, Aspirin, and caffeine). So, I'm taking her in at 4:45 today, but that's her take on it. As for the head nodding and blinking, she said it does sound like a tic, but that's all she really said about it. Maybe we'll talk more about that today. Sigh. > > Thanks, > > Beth > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
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