I am 19 years old and I found out I had chiari malformation when I was 16. Before that I suffered with migraines 24/7 also. And any pressure in my head limke sneezing or coughing made it worse. I had to be homeschooled my last two years of high school and it was hard to do any activities. Well I waited for a year to have my decompression surgery and my mistake was waiting so long. I am thankfull my daily migraines got better but my other symptoms got worse and I developed a syrinx. I am on disability now I have been diagnosed with depression, ataxia, sleep apnea, cervical dystonia, POTS, neuropathy, etc.... My Main problem is I have no balance. I have to have help on stairs and I fall a lot. I am now facing a spinal fusion surgery next month to maybe help some of my symptoms now. U say u have had a lot of tests but trust me so have I. It took a few to find the chiari. They found it by an MRI of the brain with contrast. It sounds li8ke this could be what ur diagnosed with. My advice to u is to have them search for this SOON. If This is ur problem u really need to have them take care of it. Don't be dumb like I was and wait around cause then even surgery wont help ur symptoms and they could even possibly worsen as mine did

I have a lot of issues but have no headaches at approaching 77. I've been taking OPC's mainly pycnogenol and now for 19 yrs grape seed extract. I still keep Pycnogenol at home as I make moisturizer cream with pycnogenol. But no headaches, no sinus issues, no allergies....had them all before 1995.

You might want to do some research on OPC's....these powerful antioxidants address so much in our bodies.....

This is one great site, I'm NOT endorsing the company, believe me, just like the way they "say it"....

www.grapeseedextract.com/
The OPC1 components in GSE are 50 times stronger than Vitamin E and 20 times stronger ... It strengthens blood vessels, improves skin, and aids in circulation.

No recent posts on this topic but hoping someone might have info. I have a family member diagnosed with ideopathic pachymeningitis and I’m hoping for a second opinion. Online search looked like Mayo Clinic and ucsf have experience with the condition. Anyone have experience with either?

Welcome, Ann68!

If you haven't already found this out, you can search here on NeuroTalk for terms or phrases. For instance, when I entered "idiopathic pachymeningitis" in the search window, this is what came up:

https://www.neurotalk.org/search.php?searchid=3602277

And it is listed as a rare disease on the NORD Website:

Idiopathic hypertrophic pachymeningitis - NORD (National Organization for Rare Disorders)

Hey! I haven’t read every single response to your post, so forgive me if I repeat any ideas! Have you ever tried Botox in your corrugater muscle area / other areas knows to treat tension headaches? I’m curious because sometimes these muscles can become extremely tense and in knots (the Botox wouldn’t exactly eliminate the knots but instead would help relax the muscle use so they can “degrade” in a sense.

I have a present pain and tension feeling headache when these muscles become very tight. If you take your knuckle and do very firm small circles and go over your brow area can you find Little Rock / pea sized painful muscle knots? These can be tied to the fascia in your entire forehead and scalp - which is tied also to your neck and upper shoulders.
—- I want to share a rabbit hole I went down — here is a link about MYOFASCIAL MASSAGE therapy for muscle knots and tension in the face. It’s fascinating and I have had some relief by doing massage / and pressure point pressing — the gentleman who wrote the article explains better than I can on this response..


IF YOU DO THE MASSAGE DO NOT DO IT AFTER BOXTOX TREATMENT RIGHT AWAY as it could push the Botox into an area you don’t want it before it settles.. the article also states that the myofascial massage can result in full healing of these muscle knots where as Botox can relieve symptoms but not heal the area in the same way as it doesn’t help
With blood flow and regeneration like this kind of massage work does.

Just wanted to share !

I apparently cannot post a link as I haven’t posted 10 times on this forum .. which is an odd rule.

GOOGLE : myofascial massage muscle eyebrow knots — the website is called OBSERVED IMPULSE that has this mans article with his before and after instructions ! The article is written by : Dr. Jared Edward Reser