Hi,I’m Kelly I’m new to the support group. I have been living with chiari symptoms since 1995, but was finally diagnosed in 2011 and had decompression surgery. It’s been a long journey. I’m just wondering if anyone has severe pain on just one side of there head? Mine is on the right side it cause facial pain,my teeth only on the right side will hurt also my ear on that side will burn. My nose one that side will hurt, and I have pressure in my right eye. It makes my neck, shoulder and arm ache. It comes and goes. Luckily it’s not an everyday thing, but it happens quite a bit. Any comments would be much appreciated.
Hi Kelly, reading your post put me in mind of a response my mod colleague TJ1 wrote on THIS discussion about post op pains so I wondered if it might help make sense of your headaches and pain? Kindest, Jules
Thanks, I read it and it makes sense. I just wished I had, had all of this information at the time of my surgery. I was in such bad shape at the time that I couldn’t really function. I trusted that the doctors new what they were doing. Nothing I could really do about it now. I haven’t been able to work in four years and I have no money to pay medical bills. I’ve tried to get on disability, but we all know that’s a joke. I worked hard for 20 years. I guess they think that one day I made this all up, so I could live in poverty and be miserable. Oh and got my head cut open for the hell of it. Sorry to vent!
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Hi Kelly. I'm going to be honest this illness has me going crazy. I have been to Dr. appointments this entire week. It has been crazy. Some think I'm crazy cause of the pain I have, yet others understand the process this illness and have been real helpful in the process. The way the found out I had Chiari was because of my constant pain on my neck, back, legs and arms. My headaches have only gotten worse. It almost seems like the symptoms got worse when I was diagnosed. This past week the headaches are so bad, it almost seems like they travel down my neck and get stuck in the middle of my back. I feel a lot of pressure. The one side headaches do happen yet mine seem to start in one area and travel. Or it may just seem that way but they are not fun. Another thing that I have is constant nose bleeds. I was seen by an ENT Dr and he couldn't find the cause of the nose bleeds. He reviewed all my medication and had me stop NAPROXEN as this particular medication thins your blood out. It did help yet recently the problem with the nose bleeds came back. Tomorrow I get to go see the neurologist and hopefully he can give me answers in regards to the nose bleeds and give me something for the headaches cause they are no fun. I really hope your headaches minimize soon.
Thanks for your response Lilik,
So I actually meant one sided headaches, but I was probably in pain when I was typing that. Not a surprise! I think most of us are lol! My pain starts in my neck then on the right side of my head, it even travels down my right arm. It’s horrible! I do have some good news since I posted this. So besides the chiari, I had a neuro opthamaligist that thought I had intercaranial hypertension that was in 2011. She sent me to get a spinal tap, it was supposed to be done really early in the morning when my head hurt the most. It didn’t get done until almost noon. My pressure was only at the very highest of normal so she refused to treat my for it. I couldn’t get any other doctors to treat me for it either. Anyways I had an appointment with my family doctor which I’ve been seeing since 2001. I just basically told him that at this point every thing except chiari and intercaranial hypertension have been ruled out , so at this point we are just treating symptoms and any doctor can do that. I said why can’t we try treating me for intercaranial hypertension for one month and if it works great and if not than we no that’s not the problem . He agreed so he put me on actazolmide. It only took a few days and the intense pressure in my head went away. I still have pain in my neck but it’s more of a burning pain. I am finally sleeping all night for the first to time in years. It feels like a miracle. I had only been sleeping 2 to 4 hours a night because I was in so much pain. I also take tramadol for pain, a muscle relaxer, and gabapentin arm and leg pain. I’m so glad my doctor was willing to try it.
That is great news Kelly. Now that we touch the subject on medication I was wondering what has worked for you? These are the medication I'm currently on.
Meloxicam - Arthritic Pain
Prednizone - I just finished my 20 mg dosage. This is a steroid. It helps for many things but they have been giving me this for the Asthma. Latetly it's been real bad. So they started me on Prednizone 50mg for two weeks, then Prednizone 40mg for 2 weeks and i just finished the 20 mg that lasted about a week. In the past I also took it after spine surgery because the implant was not adapting correctly to my body and it was causing me major infection. But this medication makes you gain so much weight.
Tramadol - I take for pain. Right now they have me holding off on it because they believe it's no longer doing anything. My body became immune to it. I started taking this prior to spine surgery along with Norco 7 cause the pain was horrible.
Norco 3, 7, 10 - I have been on norco for a long time. I was on Norco 10 for about a year. My body became completely immune to it. They no longer want me to take it.
Percoset 5 - They just recently changed my pain medication to Percoset 5. In all honesty it only gets me a little drowsy. They pain goes down a little but not completely away and that only last about 2 hrs if that.
Gabapentin 600 - this is for the nerve pain. This helps very little. I have noticed that when i take it I get so many cramps. So instead of 3 a day I only take it once.
Albuterol - Inhalers every 4 hours
Flovent - it another inhaler this one has steroids i take this once a day.
Cough Syrup - I have been taking this the past 2 months only because the cough is real bad and it has helped a lot
Naproxen 500 - This helps with inflamation. Yet i have to be careful when taking this along with meloxicam cause its from the same family and this medication was thinning my blood out a lot.
The reason why I ask is because I want to see what has work for you and what hasn't. Or what other medication you can suggest that can probably help with the pain.
Hi Lilik, So I cannot take narcotic pain medication because I have severe itching, excessive sweating, and it causes me breathing problems. Even after I woke up from my decompression surgery I made them take me off the fentynol drip. They gave me Norco 10 for the pain. I took that for only a short period of time because of the reaction I had to it. Tramadol works okay as long as I take it with two Tylenol, so I usually take two of each. I also take two tizanidine hcl 6mg (muscle relaxer) at bed time because I suffer from constant muscle spasms and muscle twitching. I was taking flexeril but it stopped working for me. That is pretty much all I have been on for the past few years, but before that I was prescribed all sorts of stuff. I was put on prednisone several times, anti inflammatory ’ s and antidepressants. None of that did anything for me. I was also on gabapentin for the tingling in my arms and legs. I stopped taking it because it didn’t do anything for the tingling. The tingling has been going on for almost 5 years now so I think it is permanent. Any ways just being on the tramadol and muscle relaxer alone was doing very little to help and in the past two years I developed severe nerve pain in my legs. Night time was torture. The pain was so bad the medacine didn’t touch it. Also the pressure felt like it would build up in my spine and go into my head, and then the pain would flair up in my legs it happened every night. So I just recently told you I was put on acitazolmide 150mg twice a day and 1200mg of gabapentin. So taking those in and the tramadol, Tylenol and tizanadin. I can finally sleep at night. No more pressure in my spine and head, and no more leg pain. I still have the tingling, chronic fatigue, static sound in my head, ringing in my ears and pain in the back of my head and neck. I’m sure there is other stuff, but being able to sleep all night is a miracle!
I’m not sure if that helps you or not? You suffer from nose bleeds, breathing problems, a cough and have had back surgery. I have not had back surgery or breathing problems, however I have had to deal with nose bleeds and some coughing problems a few times in my life. I’m originally from Santa Rosa, CA. I can remember having a lot of nose bleeds as a child. I remember one so bad I ended up in the hospital. We moved to Idaho and they went away. When I was 15 I moved back to California to live with my grandma. After a few months of being there I developed a really bad cough and started having nose bleeds. The school nurse asked me if I was doing drugs, so I asked her how drugs could make your nose bleed, that’s how I learned about cocaine. Lol! I moved back home and it went away. So maybe I’m allergic to California. Lol!