HNF wants to help our Inspire members get answers to questions related to Charcot-Marie-Tooth.
One topic that has been addressed is headaches and CMT. Some CMT patients have reported tension headaches from off-balance gait, scoliosis, and neck & spine arthritis.
Discussing these issues with your medical provider is critical to getting the help you need today.
When HNF partnered with the Inspire Community, our mission was to encourage conversations just like this one.
Come join the conversation and many more with other CMT’ers and share your experiences with our Inspire community!
I’m diagnosed with CMT2a. I get headaches with ringing in my ears. I feel weak, dizzy, sometimes nauseous with it. Feels like it goes from behind my eyes to the back of my head. I’ve gotten them since I was little. Maybe at least once a month. Sometimes a couple months go by without a headache.
Have cmt and headaches/migraine extremely bad and have seen many different doctors and everything’s clear..They suspect it is my cmt that is causing the headaches. By the way these headaches of mine are going all day 24/7 it’s hell.but they have tried a couple of different seizure meds for it and they do work.. for about the most a month and then quit? Why they really don’t know other than its my tolerance for how long meds last? I don’t know I’m not doctor but that’s what they thinķ. So I’m pretry much stuck jumping meds.. but now I’m stuck to one med cause my doc can’t find any other med…and I still am in pain. But it just seems like no one cares and I will be living like this forever..it’s already been 20 years.
I was diagnosed with CMT over 10 years ago. While genetic testing has yet to show what type I have, it runs strongly in my family and I was diagnosed by EMG/Nerve Conduction and symptoms by Gareth Parry. I have all the things mentioned above. Off balance gait (have AFOs), very severe spine, hip, knee arthritis, scoliosis, and kyphosis. I also suffer from tension headaches. I was granted disability, not based on my CMT, but my spine. I have had one decompression/fusion surgery and am getting bad again above and below my surgery. I hope as genetic testing expands to find out what I have.
I think there was more symptoms that are not included in CMT symptoms. I don’t have headaches, neck or back pain but I do have tension.
My 11-yr-old was just diagnosed with CMT 1A after seven years of slowly progressing symptoms. Her headaches recently have become almost a daily struggle, and I’ve wondered if it is CMT related. She also often has neck pain. What causes the headaches? Is it tension of the muscles? We’lol certainly talk to her doctor.
Hi I was diagnosed with cmt 1a when I was about 12. I was originally diagnosed by seeing a doctor for my headaches but after she noticed body disformaties. After diagnosis my headaches were neglected and have never impacted my since apart from the last year. I was tested for my eyes but they were all clear and nothing further has yet to be done. I have just read this and thought maybe it could be a cause and is it worth getting it checked? Could there be something to help the headaches because they are highly disruptive and extremely painful. Thanks
Who did you have to go thru to get a diagnosis. Daughter has been to 2 neurologist. Foot doctor was the one who stated it could be. Headaches started about 2 years ago but easily falling, bumping into someone next to them. We live in Tennessee but it seems that due to insurance no one is aggressive enough. Neuro stimulation test was normal. Both Neurologist I’m sorry I don’t have an answer.
BCBS Obama care. She also has cystic Fibrosis.
We had to go through all the doctors you mentioned and also our daughter was checked to possibly be autistic. She didn’t end up meeting enough of the symptoms and that was ruled out . Next referral was to a geneticist which is where they took blood as she thought it could be Cmt but also said not to worry as she was just screening to be sure ot wasn’t that. Then when we got the results it was confirmed that it was I fact marie Charcot tooth. So my advice would be to ask to be referred to a Geneticist .
I have cmt and was diagnosed with it about 7 years ago whilst seeing a doctor for continual headaches before you noticed other symptoms of cmt e.g. muscle weakness and wastage etc. Recently I have been getting horrendous headaches which I find impossible to get rid off. Doctors thought it was originally my eyes and had tests and was all clear. Nothing further has been done. Where can I go from here?
I’m 16 and was diagnosed with cmt type 1a, 3 years ago. I have been suffering from constant headaches for about 4 years and they are getting worse I now suffer from a constant migraine like pain. After an MRI it was noticed that I had thickened nerve roots at the top of my spine. After many tests they cannot find anything else that would be causing my headaches. Along with my cmt worsening my headaches have stopped me from doing every day things. I’ve tried everything to get rid of the headaches but nothing has helped. Does anyone have anything that made the headaches go away. I’m desperate.
I think I might have this.
Hi Matthew,
Have you thought of getting some genetic testing?