I'm 17 years old, almost 18, and I was diagnosed with Chiari on Monday. My cerebellar tonsils extend about 5 mm into my spinal area, as I was told. I've had one MRI so far, and I go back for another next week. I have an appointment with my neurosurgeon on October 13th to discuss treatment. For the past 14 or so years, I've had chronic migraines, but lately, they've been so severe and so constant (that was what prompted us to get the MRI done). So the Chiari is an explanation.
For the past two or three weeks, I've been experiencing severe headaches at the back of my head, neck aches, ear aches, and sinus pressure, accompanied by nausea. When I say I'm in a tn of pain, I mean it. I was prescribed Fioricet to deal with the pain until October 13th when I see the neurosurgeon, but as of now, I'm in such agony I'm not sure what to do. I feel as if I'm being stabbed in the back of the head 24/7, and the pain meds only relieve any pain for about an hour or so. I can barely function, and I lay in bed for several hours per day crying from the pain. Is there anything I can do to relieve the pain and/or speed up the process of treatment? My quality of life is being severely impaired, and this chronic excruciating pain is taking such an emotional toll on me. Should I go to the hospital? Will they be able to help? Any comments, questions, and especially support are needed. Thank you so much.
Lindsey, I’m so sorry you are in so much pain. A trip to the ER is definitely a good idea. Sometimes you need a relief from the intense pain- especially if you are reaching your limit. Please go. Other things that can sometimes help a little are ice to the back of headneck, and shoulders, Arnical gel or cream to the same areas, magnesium and vitamin D3. Since you are newly diagnosed please look at the “understanding Chiari” tab. There are other conditions besides Chiari that you and your NS need to rule out. Also, keep in mind that not all NSs are skilled to handle Chiari correctly or will even acknowledge Chiari as symptom causing. I hope you have a good one, but ease be prepared to get a second or third opinion.
Thank you, Jenn. I’m going to call my physician in the morning and see what he recommends.
I’m not depressed by any means, but sometimes I feel as if it would be easier to be dead than to be in this much pain. I’m just so emotionally drained from this, as well as physically.
I know that if I go to the ER, they’ll just hold me for 2 hours and administer narcotics, but I’ll end up feeling the same pain the next day and the next.
I’ve just lost all hope at this point.
Don’t lose hope. I know how painful this condition can be. Before I had my Chiari diagnosis I was going to the ER 3-4 times a week just to get a few hours relief from the pain. My family doctor had given me percocet for pain management. It worked but I hated taking them because I can’t sleep when on narcotics. I don’t like how they make me feel, the fuzziness is terrible, and because I hate that feeling I don’t sleep, even if I take a sleep aid.
There is always hope when faced with the extreme pain of this condition. I have found that for me, being the weird Lil monster I am, that taking my chronic pain meds (gabapentin) and reading a book helps me block the pain because I zone out of reality into the book. And the chronic pain meds are working well for me thus far, as long as I take them every 6 hours.
I send you all of my hope and good juju to help you through the pain. Ice packs and medicated salves will be your friends. I use a slave called Unkers, it works wonders not only for the pain but for lots of other things. I hope things get better for you.
Sending super tigger tackle hugs (like from winnie the pooh!) to you.
stay strong babe I too was just diagnosed in the last few weeks. I've been dealing with the pain in my head for the last 15 years imatrex sometimes helps but I too have to take pain pills to function. I got my MRI because my arms and legs started going numb and my spine started feeling like it was being crushed. I have a long family history of Chiari tough and knew what to expect my Aunt and her daughter both have it and one of my other cousins plus I'm pretty sure my 6 year old has it based on his headaches and difficulty swallowing. Talking to people on here has helped a lot. its nice to know your not crazy when you say you can feel your brain divided in half and some one replies i feel that all the time or when you say your scared to death of escalators because you feel like theres nothing under you and 10 people say me too. were all here for you your not alone and dont be afraid to tell us about a symptom your having someone out there is having it and can point you in the right direction. and PS dont be afraid to take pain medicine to feel better I hate being compared to some pill addict there is no magic shot or chemo to fix us we do what we can to survive from day to day and have as normal a life as possible and even being a so called zipper head isnt a cure so take charge of your life and never let any one make you feel bad for trying to live it to the fullest cause for us thats all we can do. Feel better Love !!!
Lindsey, never never never loose hope. There are NSs out there that actually help people!!! You will get help as long as you don’t give up. Hang in there honey!!!