Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 HI Sherry, I HAD TO WRITE TO YOU, BECAUSE SOMETHING YOU SAID REALLY GOT MY ATTENTION. I CAN'T LAY ON ONE OF MY EARS NEITHER BECAUSE IT HURTS. IT'S A STRANGE PAIN BUT, I ONLY FEEL IT IF I PUT PRESSURE ON IT. I NEVER THOUGHT OF IT AS SOMETHING RELATED TO " CMT " BUT, NOW READING ABOUT YOUR CASE, I THINK IS TOO MUCH OF A COINCIDENCE. I ALSO, SUFFER FROM MIGRAINES. Betania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Hi sherry, i get the same bad headaches, tinging of my scalp, numbness on one side of my face, i have even felt numb on a side of my body, head to toes, had several doctors try and figure this out but they were clueless and blamed it on the CMT, because the problem is not constant the docs said it was probably the nerves going haywire and CMT is the cause, i was told this. I can go 5-6 months without the numbness feeling but have headaches daily and i take acetominphine daily to get through my days, i know what your feeling, its strange and so far i havent heard a good explanation except its the CMT, gee thanx doc! jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 Hi Sherry, The way you describe your pain makes me think it could be shingles. It typically only affects a single dermatome, which is the sensory distribution of a single nerve. It is a reactivation of the virus that causes chicken pox. I had a case last year that sounds very similar. It started with a painful scalp, mostly when lying on it or washing my hair - ouch! and progressively got to be more and more intense until one day I screamed when my son touched my hair - felt like an ax in the side of my head. It involved the left scalp, ear, neck and upper shoulder. After several days of this a crop of vesicles appeared. At that time I went to the ER and got anti-virals (which make you feel awful) and percocet (which doesn't really stop the pain, just the caring about it). Now it reappears when I'm really stressed out, not the vesicles (which are contagious to those who've never had chicken pox, so you must quarantine yourself when they are open), but the pain flares now and then, thankfully never as bad as it was. While we're on weird symptoms: I wonder if anyone has had what I'm experiencing right now for the 3rd time in about 5 years. I wake up with the left tip of my tongue densely numb. Gradually over about a week it becomes more lightly numb but begins to involve the entire left side of the tongue. Today at about 1 1/2 weeks out I feel like when they put the topical lidocaine in your mouth before giving an injection, the way everything on that side of your mouth including the lip get lightly numb. The first time it happened I was whisked into a CT scanner before I could blink. No strokes found. The next time, they were puzzled and asked me what I'd like them to do. I didn't go in this time, what's the point? I imagine it will come back eventually. It has been so strange, it feels like that " corner " of my tongue is missing and I find myself checking it in the mirror again and again. Interestingly, when I touch it with my finger I can taste the salt on my skin. Holli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 My headaches are the result of bad disks in my neck. I assume they are bad from looking down all the time while walking. A few adjustments at the chiropractor and I am good for a month. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 Jim & Sherry, Have you tried to connect the symptoms with food or additives you are eating? I have a friend who does not have CMT but has the symptoms you describe whenever he eats anything with MSG in it. Might be worth checking out. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Well...I'm still waiting to hear results on the MRI...and the headaches continue... And I can totally understand what you mean about looking down all the time while you are walking....I probably do the same thing. My insurance won't pay for a chiropractor....at least I don't think so...guess we'll just wait for the MRI results. Thanks for your response . Hope your headaches stay away! Hugs, Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 I never thought of that Sue...we'll see what happens after I get the MRI results. Thanks for your response. Hugs, Sherry -- Re: Headaches Jim & Sherry, Have you tried to connect the symptoms with food or additives you are eating? I have a friend who does not have CMT but has the symptoms you describe whenever he eats anything with MSG in it. Might be worth checking out. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Betania, Thanks for your reply. Yes, it is a strange pain....I hope yours isn't bothering you too much right now. I am still waiting for the MRI results. so we'll see. Take care. Hugs, Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Thanks for your response Andy. I really don't think this is a migraine... if it is, it's like none I've ever had before. I wish I had the results of the MRI....then I would know what the heck is going on and where to go next. Hugs, Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Hi Sherry, My MRI didn't show anything but the x ray of my neck did. Basically I have compressed disks L 2 and L 3 if I remember correctly. Once I went to the chiropractor with such an awful headache,I had to wear sunglasses on the way there. I was adjusted and with in a minute my eyes felt better. By the time I got out to the car my headache was gone. My head felt sore from the headache but not hurt. I was a believer from then on. Most chiropractors give a discount for cash patients. It might be worth it for you to get an x ray. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 I have headaches but are not like migraines. They come on after taking the methotrexate, for me. I took my methotrexate yesterday and this morning as usual had a light headache. I have told my Rheumatologist this before and he said to take it with food. It still does not help though. Irish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2009 Report Share Posted October 24, 2009 Hi. My name is Pam and I am pretty new to the group. You are all such warm and caring people. I wanted to respond about the headaches. I had been on Methotrexate for around six months and started getting terrible headaches. I couldn't come up with a clear thought if my life depended on it. My rheumy asked me to reduce the dosae but the headaches continued. I am now off methotrexate completely and waiting to see what fun drug they want to try next. Take care. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Make sure he's hydrated, he has enough magnesium, and you are doing chelation at 3-4 hour intervals. Also a low enough dose. Dehydration can cause major headaches. Barb [ ] headaches my son seems to be getting 1-2 headaches a week now with chelation.He can't tell me this I am presuming it b/c he is crying.I have to give tylenol due to aspirin allergy.I also massage his head and he stops crying after 15 minutes. He is 60lbs and gets 12.5 DMSA and 5mg ALA.too much???jake's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Headaches or pain resolving with head massage could indicate sinus problems (the massage drains them). This in turn points to yeast, which is very much aggravated with DMSA. How is your yeast protocol? nikkibarbieri wrote: > > my son seems to be getting 1-2 headaches a week now with chelation.He > can't tell me this I am presuming it b/c he is crying.I have to give > tylenol due to aspirin allergy.I also massage his head and he stops > crying after 15 minutes. > > He is 60lbs and gets 12.5 DMSA and 5mg ALA.too much???jake's mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Also make sure you are giving plenty of anti-oxidants like vitamin C and E. TJ ________________________________ From: nikkibarbieri <nikkibarbieri@...> Sent: Wed, February 3, 2010 2:47:41 PM Subject: [ ] headaches  my son seems to be getting 1-2 headaches a week now with chelation.He can't tell me this I am presuming it b/c he is crying.I have to give tylenol due to aspirin allergy.I also massage his head and he stops crying after 15 minutes. He is 60lbs and gets 12.5 DMSA and 5mg ALA.too much???jake' s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Our dr recommend Mortrin unflavored over tylenol Natalia Sent from my BlackBerry® smartphone with Nextel Direct Connect [ ] headaches  my son seems to be getting 1-2 headaches a week now with chelation.He can't tell me this I am presuming it b/c he is crying.I have to give tylenol due to aspirin allergy.I also massage his head and he stops crying after 15 minutes. He is 60lbs and gets 12.5 DMSA and 5mg ALA.too much???jake' s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 B2- ribloflavin is used to treat migraines. You might try this instead. B2 helps enzyme function in the body. From: nvibbott@... <nvibbott@...> Subject: Re: [ ] headaches Date: Thursday, February 4, 2010, 1:20 AM  Our dr recommend Mortrin unflavored over tylenol Natalia Sent from my BlackBerry® smartphone with Nextel Direct Connect [ ] headaches  my son seems to be getting 1-2 headaches a week now with chelation.He can't tell me this I am presuming it b/c he is crying.I have to give tylenol due to aspirin allergy.I also massage his head and he stops crying after 15 minutes. He is 60lbs and gets 12.5 DMSA and 5mg ALA.too much???jake' s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 > my son seems to be getting 1-2 headaches a week now with chelation. This would have meant yeast overgrowth here. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Children's Motrin is better for autistic children. TJ ________________________________ From: nikkibarbieri <nikkibarbieri@...> Sent: Wed, February 3, 2010 2:47:41 PM Subject: [ ] headaches  my son seems to be getting 1-2 headaches a week now with chelation.He can't tell me this I am presuming it b/c he is crying.I have to give tylenol due to aspirin allergy.I also massage his head and he stops crying after 15 minutes. He is 60lbs and gets 12.5 DMSA and 5mg ALA.too much???jake' s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2010 Report Share Posted February 28, 2010 Hello Tameria My son Aedan is 7. He gets headaches when he gets car sick. He does not complain about stomach aches when we drive but get bad headaches sometimes. I guess that it may have something to do with his vision, though I am not sure In a message dated 2/28/2010 9:25:51 P.M. Eastern Standard Time, nativejoyo510@... writes: Hello all, I was wondering if anyone, children or adults, who have BPES have been experiencing headaches or migraines. I usually have them for several days in a row every now and again, so I was wondering if there was any ties. If so, how long do they last, how severe are they, etc. Thx, Tameria CO, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2010 Report Share Posted March 1, 2010 Hello all, I was wondering if anyone, children or adults, who have BPES have been experiencing headaches or migraines. I usually have them for several days in a row every now and again, so I was wondering if there was any ties. If so, how long do they last, how severe are they, etc. Thx, Tameria CO, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2010 Report Share Posted March 1, 2010 I get them as a result of being photophobic. I am very sensitive to bright light. -Chris From: nativejoyo510 <nativejoyo510@...>Subject: blepharophimosis headachesblepharophimosis Date: Sunday, February 28, 2010, 9:18 PM Hello all, I was wondering if anyone, children or adults, who have BPES have been experiencing headaches or migraines. I usually have them for several days in a row every now and again, so I was wondering if there was any ties. If so, how long do they last, how severe are they, etc. Thx, Tameria CO, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2010 Report Share Posted March 1, 2010 Hiya Tameria, Oh yeah, Migraines have been a less than welcome part of my 27 years of life. Between glare headaches, changing prescriptions for glasses as a kid, and some food triggered intolerences, I've had more than I dare to count. The food intollerence is for foods with high levels of Amines and Salicylates. (basically flavour, and smell) By avoiding these foods I rairly get a migraine anymore. My trigger foods are Potatoes, Avocado, Banana, Cheese, Wine. Also most any inflamitories and apirin based pain killers. I'm looking into if Oranges, Orange Juice and Strawberries are the next things to be added to the list. ~if chocolate goes on the list I'll just have to live with the pain~ Walking through the perfume deaprtment can trigger one as well because most perfumes have a high levels of Salicylates. There's nothing quite like having that woman wearing the knock-'em-out perfume in the mall, and knowing which stores she's been in because you can feel the beginings of the migraine nausia getting worse as you follow her lead. Ahhh the joys of life. *Big Hugs* Be good Belinda in Brisbane Australia --- In blepharophimosis , " nativejoyo510 " <nativejoyo510@...> wrote: > > Hello all, I was wondering if anyone, children or adults, who have BPES have been experiencing headaches or migraines.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2010 Report Share Posted March 2, 2010 Me and my daughter emy get migraine, we both have BPES my mum and grandmother did too, they didnt have BPES. I went to a doctor who specialised when emy was little, as she had migraine in her tummy, and the school were concerned so we got it checked out. He diagnosed migraine, she is 14 and now gets them in her head too. Clare - herts uk Hello all, I was wondering if anyone, children or adults, who have BPES have been experiencing headaches or migraines. I usually have them for several days in a row every now and again, so I was wondering if there was any ties. If so, how long do they last, how severe are they, etc. Thx, Tameria CO, USA & Tonikka Are you or anyone else looking for a photographer? for your family? pregnancy? Baby? Children? Wedding? check out our websites tmareephotography. blogspot. com tmareephotography. com Quote Link to comment Share on other sites More sharing options...
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