Treating Constant Headache with Idiopathic Syringomyelia

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Treating Constant Headache with Idiopathic Syringomyelia

Postby syri » Thu Oct 30, 2014 11:14 pm

For the past six months, I have had a constant headache, all day, everyday. It gets better and worse, somewhat randomly, but it hasn't stopped. I also have neck, shoulder, and arm pain, but these are not as bothersome as the headache.

I have idiopathic syrinx at C5-T1.

I am currently on nortriptyline, and it doesn't seem to help, at least not enough.

Have you found medication that helps?
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Re: Treating Constant Headache with Idiopathic Syringomyelia

Postby pmaxwell » Fri Oct 31, 2014 2:05 pm

Don't rule out other infections. Infections in the body can cause pain to increase for patients with SM. You might also want to consider having your inter-cranial pressure checked. Sometime (not often I'm afraid) diuretics can help if it is ICP.
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Re: Treating Constant Headache with Idiopathic Syringomyelia

Postby syri » Fri Oct 31, 2014 7:02 pm

CSF pressure was checked with a lumbar puncture, and it was normal.

Blood work has not been indicative of an infection.
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Re: Treating Constant Headache with Idiopathic Syringomyelia

Postby kristinanneb » Tue Nov 04, 2014 10:30 am

I too hve an idiopathic syrinx. Is it possible that your headaches are caused by chronic muscle tension? This is not the same kind of muscle tension that "normal" people have. Syringomyelia causes my nerves to flare up which leads to extremely severe muscle tension in my shoulders, neck and head, which often causes headaches. One thing that has helped me with this is a regular (weekly) massage. Is this something you can look into? I know it can be very expensive. I am lucky in that it is somehwat covered by my health insurance. In particular, massage with someone educated in craniosacral therapy mmight be helpful - it has been helpful to me. Good luck.
-Kristin
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Re: Treating Constant Headache with Idiopathic Syringomyelia

Postby Graybo » Tue Nov 04, 2014 10:50 am

I agree with Kristin, it's probably your muscles causing the problem.

I use an electric massage machine and it does help, but it is also important to use plenty of magnesium which is best absorbed through the skin to avoid the laxative effect of high doses. Magnesium relaxes the muscles. Try soaking with Epsom salts or magnesium chloride. Borax and DMSO are useful too. Read some of the old posts on magnesium and muscle tension.

If you look up trigger point therapy on youtube or elsewhere you will find that it is painful around the trigger points that are affected.

The easiest way to relax the muscles is with RSO, as we talked about in another post, and working on the trigger points yourself eventually releases the tension. It can take a long time to fix but it's worth the effort.
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Re: Treating Constant Headache with Idiopathic Syringomyelia

Postby syri » Tue Nov 04, 2014 11:08 am

Thank you for the info.

What is RSO?

I don't have access to a tub. Are there other ways to apply the things you mentioned?

I have been told by massage therapist that my muscles are very tight. I took a muscle relaxant (cyclobenzaprine) for a few weeks, but that didn't help.
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Re: Treating Constant Headache with Idiopathic Syringomyelia

Postby Graybo » Tue Nov 04, 2014 1:35 pm

RSO is also known as Rick Simpson oil. It's a concentrated form of oil made from cannabis indica types. it's illegal in most places so it is awkward to talk about. Here's some info about muscles - viewtopic.php?f=3&t=14440

...and this one - viewtopic.php?f=3&t=14356

You can add those salts to a foot soak instead of a bath, or you can make a concentrated solution and spray it on your body. Magnesium is absorbed easily through the skin.

Do a search on 'transdermal magnesium therapy'
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Re: Treating Constant Headache with Idiopathic Syringomyelia

Postby Graybo » Tue Nov 04, 2014 1:42 pm

also meant to say that DMSO is supposed to be the best thing for reducing intracranial pressure
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Re: Treating Constant Headache with Idiopathic Syringomyelia

Postby syri » Tue Nov 04, 2014 3:10 pm

I am in California, where medical cannabis is legal in case that allows you to provide more information.
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Re: Treating Constant Headache with Idiopathic Syringomyelia

Postby Graybo » Tue Nov 04, 2014 4:16 pm

I am in England where it is illegal.

You can search youtube for Rick Simpson or read some of the older posts in those links for asap and others where we talked about it.
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