For the past few years I have been suffering from severe headaches that can last up to 3 days. They are causded by muscular tension in my neck and shoulders. My neurlogist gave me some exercises to do, which sometimes work, but when they don't even strong painkillers give little relief.

A good massage does work but it's difficult to get one of those at work!

I was wondering if anyone else suffers similarly?

I used to have very bad headaches and my daughter and grandson (who don't have MC) have problems with this. One of the best things we found is a large sock filled with long-grain rice that can be microwaved (you can sew or tie off the end).

The other thing that has helped is taking folic acid...we apparently have a gene mutation that causes homocysteine to build up and it can trigger severe headaches. You might ask your neurologist to test you for the MTHFR gene mutation just to see if that might be adding to the severity.

Jan

Hi Pete - I also used to get really bad headaches. (I also got migraines, but that's another issue!) My neck and shoulders would tighten up so intensely that my head felt like it would explode. I started doing deep breathing exercises and meditation, chanting or mind clearing, combined with very slow but serious stretching exercises to loosen my neck, shoulder and back muscles. I've always found stretching movements to be very helpful and relieving. I also stretch to try to touch my shoulder blades to each other, then move my shoulders up and down and back and forth, which sort of massages the muscles of my back into each other. I find it loosens and relieves them. Then a hot shower or bath will help further.

I also felt the need to have pressure on my head, and would ask friends to place their hands on my forehead and the base of my skull, and press, hard. It felt good to me. When my son gets headaches, he also likes this technique! Later, I learned that this is a technique used in some massage and reflexology type treatments.

I massage my temples in large, slow clockwise motions, which also helps a bit. Relaxation exercises, preferably where you lay down, and concentrate on relaxing and loosening each part of your body, from toes up, and fingers up, and wind up at your neck and head can be quite effective, too.

Have you ever tried any of the electric shiatsu massagers or vibrating heat massage pads? I have a shiatsu foot massager, but I haven't tried any of the ones for backs... but the thought is tempting!
A physical therapist at work suggested a rice sock about 5 years ago - I took one of my husband's newer tube socks and filled it, and tied a tight knot at the top, and I still have that thing today! If you heat it in the microwave, it will hold the heat for quite a while, and the rice conforms nicely to whatever spot you drape it on. The pressure of its weight feels good, too!

Hope some of this helps. I feel for you! Lois

The headache has gone, 3 days after it started!

Lois, your description fitted my headache spot on! I do try some of the relaxation exercises that you mentioned but they don't always work. I spend all day at work in front of a PC and when I come home I've got other things to do; busy life really! This dosn't always allow me the time to 'relax', which may be part of the problem, however, I've noticed a pattern to these headaches in that they are definitely linked to the muscles in my neck and shoulders stiffening up and they usually last 3 days. I find this regularity a bit strange.

Thanks for the replies, I will try something the next time I suffer an attack!

Pete, hello. I too suffer from headaches, and they can last for several days at a time. The same as everyone else, my shoulders and neck hurt as well. Lois mentioned the pressure on her head helps, It helps me as well, I place a pillow over my head and then wrap my arms around it to create the pressure. Then pray for sleep...you can't feel the pain when your are sleeping. Nothing really seems to help my headaches not massages, heat, cold, medication... nothing.
I just have to wait them out. I once had an MRI done, but was negative and showed no abnormalities of the brain (thank goodness)
Sorry, I dont have any ideas to help, just wanted you to know there are others out there with the same problem.
Beth

Pete - Since I am a nurse, and worked for many years for a large health care system, they realized that those of us in administration and desk jobs were at high risk for postural and repetitive strain injuries (like carpal tunnel, etc.). So they installed a system-wide computer program of ergonomic reminders and periodic stretch exercises. You could set it to pop up at 45 minute or 1 hour intervals, or 2 hours, i think - and each set of 3 exercises lasted maybe 90 seconds or 2 minutes, but really were helpful in reminding you to change position, breathe deeply, move a bit - you ought to see if maybe your employer would consider such a program. Alternatively, you could set an alarm of sorts for every hour or 2, and just do your own hand, arm, neck, shoulder, back things, ot get up and stretch and shake out a bit.

Thanks Beth & Lois.

As I have quite severe myotonic symptons I tend to be quite sedate anyway, which probably is not so good considering I spend my working life in front of a computer.

My employer is also aware of the problems of using a computer for work and we are supposed to have regular breaks but I find that when the workload is heavy these things seem to get fotgotten about.

It's been over a week since the last headache although I have felt my neck stiffen up a couple of times I've managed to relax my way out of it. Some times it works, some times it doesn't.

Sorry to hear that you're not that lucky Beth.

Hi Pete,

I'm new here but am relieved to read that I'm not the only person with MC who gets these intense headaches.

Various doctors have come up with their own ideas, however only one mentioned tension headache but none have linked it with the MC.

I'm going to try the rice sock idea, but wondered if any of you ever feel like your sinus are blocked as part of the headache symptoms. I often feel completely drained of energy, with black eyes while the headache is there too.

Cheers,

Rob

Type of Myotonia: Thomsen's

Country: United Kingdom

Hi Rob - I've had headaches intermittently pretty much all my life. I started with migraines at age 11. I started with sinus headaches when I was about 16 (I come from New York City, and when it was really humid, or of the air quality was really poor, my head felt like it was going to explode) - those sinus headaches usually came with inflamed/blocked sinuses, and a feeling that my head was filled with something dense and uncomfortable. Now I get pretty bad tension headaches, ever since my carpal tunnel and repetitive stress injuries extended up my arms and into my neck and shoulders.I'm sure part of this is the fact that my muscles just never really relax.

The best thing for me is deep breathing/meditative exercises, and 2 aspirin. Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

hi everyone, my migraines are definitely linked to my myotonia. when one side of my shoulders cramps up (from one of my many triggers)it can be very painful not only in that muscle but up my neck and down my shoulder blade. it also causes a migraine on that side. i'm prone to migraines and this is one of my migraine triggers. i try the same things that everyone has posted here first but if they don't work then i apply some Cyclobenzaprine cream (20%) directly to the muscle. it has been a Godsend although i use it sparingly so as not to build up a tolerance. since my shoulder muscles are the worst muscles for me as far as the cramping - they can cramp so strongly for so long that they pull my shoulders out of place - i also get Botox shots in those muscles every three months. i just keep trying to find things that can help control the myotonia monster since the doctors are not great sources of information in regard to prevention or therapies. everything that i do - different heat therapies, strict adherence to a stretching regimen, etc. - i have discovered on my own through trial and error. how wonderful to have just found this forum with others that actually know what this is all about. i'm slowly but surely trying to read through all the past posts and catch up!

Type of Myotonia: acetazolamide-responsive myotonia congenita

Country: usa

Hi Gail:

I get a painful cramping in my back over my shoulder blade which feels like myotonia + your garden variety cramp.

For years I thought the only way to get rid of it was to lay down and stare at the ceiling until it went away.

I'm starting to suspect it can be resolved with potassium (provided you have no reason to restrict your potassium). I happened to eat some coffee yogurt during the course of one of these while I was out on a walk and 20 minutes later it resolved while I was still walking, which had never happened before. The yogurt contained about 500mg of potassium.

To everyone else:

I wasn't going to say anything, but there is a ride at Disneyland called Indiana Jones, and I inevitably come off of it with a neck I can't relax for 5 minutes and a pounding headache as a result of that.

We had a particularly cold day a few weeks ago and a cold wind coming in off the ocean and the second I stepped outside and the air hit my neck, the muscles in the back of my neck instantly tightened and I started to get a headache after about 3 minutes of this.

Type of Myotonia: Becker