Can you all please tell me what you do to help try and stay headache free? I have been on sick leave for 3 days due to having headaches for 6 days continuously. Dr put me on anti inflammatories for 3 days and no change. So after consult with N put me on steroids and MRI. Mri all clear for my residual brain tumour. Chiari 15mm and Syrinx C3-T9..Today is day 2 headache free and an absolute delight!!! Back to Dr in 2 days and no doubt steroids will be dropped. What can I do to help myself. have tried every over the counter med and even prescription meds for the headaches and nothing seems to work. I have read a lot about magnesium helping-any thoughts on that?
I have tried every medication and treatment and therapy. I recommend fioricet...an older medication but no side effects like newer medications and works incredibly.Nothing else prescription wise works for me. Midol added to Prescription meds or alone is a good headache med for Chiarians per my pharmacist and NL. I also take muscle relaxers and use arnica gel. I even put it on my head when I have bad headaches. Gotta love Arnica Gel. Caffeine helps me at times..no stress, normal barometric pressure, if it's low it will cause horrible pressure headaches. Chocolate & especially dark chocolate. You shouldn't have Occipital Neuralgia since you haven't had decompression surgery but Major Occipital Nerve Blocks helps those. Dark, quiet rooms. I will list no stress again. That is a killer. Allergy or any fluid fluctuations in your head are bad. Many Members take magnesium and say it works. Steroids have never taken away headaches for me alone, but the chemistry,biology & physiology makes sense. Check on the Fioricet. I wouldn't take anything else and it is tried and true. I even took it occasionally as a teenager and I am 45 years old.
I hope you stay headache free,
My wife finds that massage therapy helps quite a bit. Helps get rid of the knots and sore shoulders... which often times likely contribute to the headaches. The relaxing peaceful atmosphere likely helps as well.
If you have coverage for it, all you need is a doctor's note and it's paid for.
I’ve not had a truly headache free day in almost two years and I’m fairly sure most of us here haven’t had a truly headache free day in a long time. I know that’s not what you want to hear but I’ve found it to be a fact of my new chiari life. But I don’t let it take my life away. I live in stubborn defiance of my pain. There are some days where I might have to concede the battle and I call those DD dys - ‘drugs and darkness’. My physiotherapist also “prescribed” warm compresses. For some this doesn’t work but it helps slightly with me.
Prior to surgery, I saw an occupational therapist for craniosacral therapy and a massage therapist. Post surgery I used the same but switched to a massage therapist who worked at our local Children’s Hospital (Cincinnati) doing massage therapy, craniosacral therapy and other alternative therapies in the NICU and on brain and spinal cord rehab patients - some of those kids had had decompression so I was totally comfortable with her. I have since become a massage therapist myself. I had so much success with treatment post surgery.
I hope I get my dx soon. I'm being accused of self-diagnosing myself. The doctors love labeling you with self-diagnosing - I'm being labelled as all my symptoms are in my head. It's just terrible! Thank God for the internet - I wouldn't know what I'd do without this site and the information that's available...
I ended up having surgery. The best thing I have ever did. I still have some problems but well worth it. Also Caffeine and ice packs with some bed rest is what I had to do when I was sick.
My chiari came on vary fast after getting hit in the back of the neck.
Nothing I could do got rid of them before I had surgery. The only thing that helped me was when I got a steroid shot. I had that before I was diagnosed. They didn't know what was wrong with me, and we were waiting on my MRI results.
My doctors gave me every med in the book. Nothing ever helped. When i asked my first dr for an mri because i had headaches everyday, and was in bed 2-3 days a week. Talked to a ns, and prayed like never before, before i made the decision to have surgery. Surgery was rough, i had some complications, but after recovering, i would do it again. Surgery changed my life! Good luck to you!
I go to a headache specialist. I thought he was crazy but he recommended physical therapy and it helped!
WOW! I have never heard of fioricet! I was just about to say I have tried every migraine medicine there is! Well, it seems highly reccommended by our fellow chiarians, but 1 more to consider. I have been on a low dose of propranolol (also known as inderall) for years. It is a very benign medicine, used in larger doses to treat high blood pressure, but has been used for years now to treat migraines. I live in so much pain, but migraines has been off the table for many years. I swear by it, & have seen plenty of good mention of it here. It is worth asking your doctor about! Zero side effects. good luck!
Magnesium definitely helps me but only in injection form, which means I need to go to either the dr office if open or the ER it’s not… I’ve been taking gabapentin and it REALLY helps, however, I don’t LIKE taking it. Several things about it bother me-not side effects just, well lets say that’s a post in itself… However it DOES work for me. I was trying to taper off of it before my decompression but at the hospital they increased my dose dramatically. So I’m back to square one but haven’t had a headache in months. I have no idea what to expect once I’m off all the gabapentin, muscle relaxers and pain med from surgery, but my fingers are crossed! Hope this helps, good luck!
Apparently I’ve had chiari for some time but Im just learning about my new diagnosis. I have good days and bad days but lately better days. I had anti-inflammatory meds, steroids, epidural, name it. I have found that my remedy is 2 Advils in the morning as I am waking up, a good strong cup of coffee then 2 Advils in evening or before going to bed but for breakfast I have a smoothie with my products called Reliv and ProVantage. ProVantage helps with the muscles and repairs tissue. I can tell you more about the Reliv product just email me.
Thank you all so much for your replies and encouragement. Saw the GP today and starting to taper off the Steroids. back to physio Monday, which I do regularly, and she wants a letter from him. She thinks it is Musculoskeletal. Back to her Thursday, if headaches still there and physio disagrees with her then back to Neurologist. Feb letter from Neurosurgeon says if headaches persist and ramp up then look at surgery. So I guess I will see what the next week brings. She has prescribed me Anagraine, and I have found that sometimes these combined with No Doze (caffeine) pills sometimes gives some relief. I will look into the drugs you girls have named,as I am in Australia and not familiar with your brand names.
Hi Frannie, I take magnesium religiously. I found that over the counter magnesium was not as effective as a practitioner only brand (apparently the practitioners only can only be "prescribed" or "referred" by a naturopath or other naturally practicing physician) and this is stronger then over the counter. I have not taken the powder form however, have been told that it is even stronger than the tablets. I was taking this before i was diagnosed with Chiari and it helped (and still helps) with the tingling in my legs and feet, neck pain and cut down the regularity of my headaches/aura migraines. This has been my experience with magnesium. It is by no means the wonder drug but it certainly has made a difference for me personally. Also, I am from Australia so not too sure if practitioners only exists anywhere else. Good Luck!!!
I have had surgery,I still have pressure headaches,they are better than they were.I am glad to hear about fioricet I may need to continue with something,hoping this will subside over time.I’m out 7 months and feeling alot better,after years of being so misunderstood.The Dr,s can be very judgemental,they are so ignorant about chiari in lots of instances.
i have all the pain meds i can use but try to take only a strong muscle relaxer. They are non addictive and i dont want to be a pain pill junky just yet in my life. Massages also work really well for me get 3 or more in like a 2 week span in really helps relaxe. Plus who cant use a good massage? i get like most people here headaches everyday. It seems like all medications some work and some dont and is different from person to person. i had surgery 19 months ago or so and it helped but not as much as i was hoping for. Good luck and thanks for all the support here.
I use Imitrex and Fiorcet. But, I also use over the counter Migraine Ice or Be Kool gel packs and Breathe Right strips.....and they work wonders. Sometimes when I can't find the adult Be Kool strips I have to buy the kids ones with the Mickey Mouse characters, but it always gives me a laugh when I look at myself in the mirror.