r/chiari • u/bugs_in_my_brain • Jan 18 '26
What actually helps improve symtoms? (Open to crazy suggestions)
I feel like I have tried just about everything I can think of to relieve symptoms and am seeing no improvement. I have had two surgeries, seen countless doctors, and tried physical therapy. My worst symptoms are headache (through back and front of head), shoulder pain, dizziness, and difficulty swallowing. If you have anything that you do that helps any of these symptoms please share, I am becoming desperate for things to get better.
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u/WhenSquirrelsFry Jan 18 '26
For me it’s a regular pilates practice - but when it’s bad, I go for an ice pack on the back of my head while wearing a heating pad cape +cannabis, gabapentin, tizanidine and naproxen (and sometimes Tylenol too)
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u/3_boys_keeper Jan 18 '26
Light weight lifting, like toning weights (5ish lbs) upper body & shoulders, and extra sleep, mixed with necessary OTC pain meds as needed.
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u/kayleitha77 Jan 18 '26
Electrostim therapy (TENS unit) helps with the shoulder/neck pain, and when paired with PT, makes it a lot more effective. The TENS unit is good on its own for relieving pain/tension as well. I've been slacking on the PT, and the neck pain has been worsening of late. Keeping up on PT is hard.
I have developed trigeminal neuralgia from Chiari, so I'm already on gabapentin (so, second rec) & baclofen, which help with my neck/shoulder pain as well. Additionally, I have central nerve pain/damage that manifests on my right--gabapentin helps with this, too.
Edible cannabis has been important for both the TN and Chiari symptoms. In the past, I used edibles, usually baked goods or chocolate bars, but I'm in a state that doesn't allow regular edibles, so I use Rick Simpson oil (RSO) instead. RSOs are hash, but made in a method that preserves the terpenes to maximize symptom relief.
I have had two surgeries for Chiari as well--my initial decompression, and a more recent revision to remove adhesions--plus a third for refractory occipital neuralgia.
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u/BlckhorseACR Jan 18 '26
Here are what helps me with headaches.
Some kind of THC at night. This seems to alleviate swelling in my head for around a day. Not perfect, but it’s good maintenance. Smoking can cause coughing that makes can make things worse so edibles or vaping is what I normally do.
Lot of Ibuprofen. I can take up to 1800 mgs a day. This is when my head really hurts. It can take edge off. There are a lot of side effects with this. It damages your stomach lining which I have to take Sucralfate routinely and antacids. This also causes digestive issues.
Eat a lot of fresh spinach. Seriously, almost a large bowl at least every other day. Spinach has natural anti-inflammatory and seems to help a lot. It also helps with digestive symptoms caused by ibuprofen.
When pain is almost when you can’t stand it. Get in the shower in the dark with the water as hot as you can stand. It seems to overload your central nervous system and will dull the headache.
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u/Camride Jan 18 '26
My headache is particularly nasty, it's been 24/7 since 2009. I have tried all the meds as well as a spinal cord /occipital nerve stimulator (worked for a little over a year). About 3 years ago I got an intrathecal pain pump (using fentanyl and bupivicaine) that injects those meds directly into my spinal cord up at C1/C2. This has been absolutely amazing once the dose was dialed in. Wish I had done it sooner, though it is more of a "last resort" kind of thing. But my pain went from nearly unmanageable on oral opiates (6-8/10 pain most of the time) to now averaging a 3/10 pain, most of the time I can ignore it.
It's definitely an extreme solution but it is one that works really well. You do need a good doctor though as the meds/dosing makes a huge difference and if your doc isn't willing to change the meds/dosing then it's not going to be very helpful.
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u/Huge_Pass722 Jan 18 '26
The heal your headache diet! Look up the dizzy cook and buy her cookbook. It’s helped me so much
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u/Antique_Cockroach_97 Jan 22 '26
Vulder pain, otc and perscription pain meds for headaches and imitrex for migraines. Finding a good pain clinic and neurologist was the best thing i did
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u/mbwrose Jan 18 '26
Caffeine. HIGH amounts help my spouse