Chiari Online Support Group

Excruciating pain and I don't know what to do

I am in the middle of another excruciating headache with pain in my neck so bad I can barely turn my head. Of course it is the weekend, the end of the month and I am out of any and all pain meds that do anything to assist.I know my entire weekend is shot as the pain is so bad I can't function. I wasn't supposed to run out of meds but my Neurologist canceled my appointment for last Monday as he decided to take a long weekend and even though I had scheduled my appointment 2 months in advance all they could do is fit me in the second week of June.

I hate when things get like this and I know from experience it will last for days to weeks. The last time I tried to get help because my dr had said that if it got like this to go to the ER I went and the doctor there had the audacity to inquire if I had considered amputation of my head to resolve my pain issues since they couldn't find anything other than opiods to relieve the pain and they didn't want to administer those.

I get so tired of doctors telling me that "its just a headache" the pain can't be that bad, Narcotics don't work for headaches they only cause rebound. You need to drink more fluids, take some benadryl and aleve and all will be right with the world. blah blah blah blah blah.

Me I just want 30 days of no pain greater than a 5, no stabbing neck pain that prevents me from turning my head. 30 days of being able to not miss a day of work because the pain is so bad I can't get out of bed.

I can completely understand what you’re going through. I’m so sorry you have to deal with the pain, with just heat, ice and over the counter stuff, that’ll basiclly barely touch it. I’ve gotten that same kind of treatment before at the er. If you can for next time, I know it won’t help now, but you can get your neuro or primary, either one, to write up a “treatment plan” and leave it on file with your hospital. That way, when you go in they know how serious your situation is, give you the proper meds,fluids and treatment and they won’t treat you like you’re seeking for meds or whatever.

I hate the fact that chronic pain patients with this kind of condition and others that we have, have our symptoms diminished or ignored, when all we want is pain free days and the ability to live a normal life. They act (sometimes) like we like taking these meds and it’s upsetting to me, to think people actually think that. But, with that being said, if it gets too bad you may have to go. And If you have to go, make sure you tell them about your neuro going on vacation for the holiday and everything. They may give you grief for not getting refills before the holiday, but hey, who cares when you feel like your heads about to pop off.

Again, I’m so sorry you’re having to go through this, especially over the holiday weekend. Stay strong and worse come to worse if the pain gets to bad, I hate to say it, but go to the hospital. That amount of pain could really mess with your blood pressure and heart rate and vision. And who cares what they think, at the end of the day, it’s your health on the line, not theirs. I hope your day/weekend gets better♡