I’m struggling to type this right now because I’m in so much pain. I have been diagnosed with Chiari for several months now, and it has been a living hell for me. I visit mayo clinic in two weeks to consult with a neurosurgeon, but as for the present moment, I don’t know how I am going to keep going. I have been prescribed painkillers, but they are narcotics and they make me Fatigued, nauseous, and out of it. They don’t really help the pain, they just numb it. I would rather not take them but it’s either excruciating headaches, muscle pain, and nausea or taking them. I can barely leave my house or get up to make myself food. All I do is lay in bed in the dark, and I have never felt so depressed in my life. I have wonderful parents, a wonderful boyfriend, and supportive friends, but none of that can help me cope with the physical pain because it is so consuming. It has drained me of life, happiness, and the will to keep going. Several times I have considered ending my misery because I don’t want to live like this anymore. I know things could possibly take a positive turn into weeks at Mayo clinic, but I don’t know what to do in the meantime and the thought of brain surgery is terrifying to me. I’m at rock bottom in my life, and although I don’t want this illness to take over me, I find it very hard to be optimistic, happy, or willing to keep fighting. I want the brain surgery, but I’m very scared of a nasty recovery because I don’t do well under anesthesia or narcotics. I would really appreciate any help, advice, or experience from any of you. I really need it because I’ve lost the will to keep going and keep fighting. Thank you all
Lindsey, I really think you should go to the ER. Call someone to come get you, get a ziplock bag of ice for your head and head out. We aren’t equiped to be in this much pain for so long, it makes us think things we normally wouldn’t. You need a break. Have someone pick up vitamin D3 and chelated magnesium supplements and start taking those everyday- it can make a difference in the pain level- but that won’t happen today and I think you need an intervention. As for surgery, yes the recovery can be rough in the first week or so with spikes and lows of pain, but it is an option and does offer the hope of relief. Something else you might try us wearing a soft cervical collar from the drug store. If you have instability in your neck or CRANIO cervical joint it can cause serious unrelenting pain. Wear for 3 or 4 days and then decide if it has helped. I developed Cranio cervical instability after my decompression surgety and was, like you, laying in a dark room for days on end crying and wondering what I was going to do. My NS suggested the collar and within a day the pain was way down. Know you are not alone with what you are going through, we understand, and are so sorry. I will post the link to the hotline in case you need it, they are trained to help and are there if you need them. Please keep hope, you are moving the right direction it just takes time. Please keep us up to date with you and let us know what’s happening.
Hugs, jenn
I’ve been where you are. If I didn’t have my dog to take care of I would have ended it. I got the surgery and my life is 100% better now. I know it’s hard and scary to be in that much pain for such a longer period of time. The surgery is worth it. The surgery was such a success with me that as soon as I woke up in the recovery room I knew I was better. I was given 10 days worth of pills for post op and they lasted me 3 months. I felt so good I wasn’t taking the meds.
Hang in there. Xoxo go to the ER get an iv going and explain to them what’s happening, they will find something to give you to help.
I’m sending you all the good juju I’ve got. Keep us posted xoxo.
I went to the ER last week. They have me fioricet and Benadryl, which was a horrible combo. I wanted to sleep but couldnt because of the caffeine in Fioricet. It was a bad experience and wasn’t helpful whatsoever
Thank you all so much though for your kind words
Tell the nurses and dr at e.r. that you didnt have a good reaction to the benadryll and fiorcet. they gave me imitrex, benadryll and tordol and i think a muscle relaxer. Still had some pain but it knocked me out so i got a break from the pain. Which is what you need.
I don't do well with that combination either.. I'm okay with just benadryl however, the fioricet doesn't not like me and I don't like it. The next time I went into the ER I said, do not give me whatever you gave me last time, I didn't do well on it and I would rather not take it. They gave me something different... I don't remember what it was.. I wasn't paying attention and I forgot to ask when I was discharged. I will go through my medical records and see if I can find it for you.
Have you tried any beta or gaba blockers? I've been on gabapentin for my headaches and lower abdominal pain (we aren't sure whats up with the abdominal stuff) and it is helping... it also makes me tired... so it helps me sleep sometimes.
Keep us posted. xoxo
I used a muscle relaxer along with pain medicine to find some manageable relief. Just remember…elevate your mattress with a telephone book while you sleep. Building up of csf fluid in your head at night is not doing you any favors. Limit your time on the computer/phone. Set a timer of like 15 minutes and take a break from it for a few minutes. It can really aggravate things. Hope these tips help. Fingers crossed! Hang in there!
Have you tried a tens unit?? It helps me sometimes when the pain gets real bad which cause muscles to tense up which exacerbates the pain. But i have a sort of hand held tens unit called a palm massager, but it gives low level electrical currents of varying types but it tenses muscles up where u put it and then releases the muscle over and over resulting in a relaxed muscle after a bit. Helps with tension headaches the most, and also when the headaches go down neck and into shoulder blades.