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1) What the hell, I don't usually like talking about my problems but I will chime in. I've had chronic migraines for 6 years, which aren't migraines they are likely CRPS or chronic cluster headaches but the diagnosis is migraines because insurance covers things with much less questions asked. I haven't had a pain free day in those 6 years and a whole slew of extra neuropathic pains have started but nothing worse than the headaches. I had brain surgery in 2009 because I had a minor chiari malformation, this is when your brain stem is squished in the whole coming out of your skull, and had my C1 vertabrae removed and I think something done to my C2. I got pressured into that surgery by my neurologist at the time who couldn't understand why triptans and Ami/Nortriptalyne wouldn't work for my headaches. After the surgery when I was in more pain then I was in before hand I put myself into a psych ward twice because I was genuinely afraid I was going to kill myself, that was my rock bottom. 2) I haven't had a spinal stimulator but I have had a super-orbital stimulator trial for a week. I can't really go into great depth since again this was that same neurologist pressuring me into things without doing proper research. They put the stimulator on my super-orbital but that wasn't actually where the pain was coming from so I had the thing pulled out of my face. What I learned from this though is that if you are going to get a stimulator make sure you have a pretty good idea that is actually where the pain is coming from. Get a bunch of nerve blocks in the area, maybe try radio frequency, then get the stimulator when the nerve comes back, because a trial is expensive and a trial that doesn't work is only slightly less expensive than getting the thing implanted. I can make a guess and say that if that nerve was the one that actually hurt the thing would have probably worked, the pulsing electrical feeling does some really weird things to pain in the area and while it is a really weird feeling it is better than pain. 3) Gabapentin is the miracle drug for me, while it hasn't gotten rid of my pain it at least makes all the annoying aches and pains I started getting in my limbs a lot less annoying. It is also extremely cheap unlike Lyrica which can be pretty pricey when you get into the high dosages. Weed helps with the non-head pain but unfortunately it can be kind of a pain in the rear end to deal with the issues of legality. Ketamine infusions helped a lot with the pain but they didn't last nearly as long for me as some people have said they do, for me it was maybe a month of lessened pain for every week of infusion so it becomes a time/reward ratio that you have to figure out. Right now Sprix(intranasal toridol) is my emergency breakthrough pain drug and it is a pretty amazing thing. I used to have to go to the ER when my pain hit a certain point because it wouldn't "break" back to a level that was at least tolerable, while the sprix doesn't prevent those desperate ER visits entirely it has dramatically reduced them. Drugs aside I have found yoga and biking to help tremendously with pain. Stretching truly helps with the deep muscle aches I get for no apparent reason. Even if you are stretching and working out parts of your body the pain isn't in you might be surprised with how much better you actually feel after wearing yourself out or just making your body feel like its been used for more than just being in miserable pain. 4) As I said in my first paragraph I was suicidal for a while after my failed surgery and it was as bad as I have ever felt in my life. It didn't help that my anti-depressants were being hosed with like crazy so that I could try amitryptaline. I still deal with lots of bouts of depression where I won't want to get out of bed for days, because I say to myself "what the hell is the point?" Therapy and exercise are the only things that have worked for me in that aspect. It does seem hard to find a therapist that deals with patients with chronic pain who aren't dying from said pain but a lot of the time, but they are out there and it doesn't seem to be that important assuming the therapist is actually good at their job. I found that even though my therapist didn't really "get" what was wrong with me he was still empathetic and helped me deal with the mundane things in my life that added to the frustration and helplessness I was feeling. I think it is very important to try and get yourself to a state where you feel less helpless, even though you are dealing with something completely out of your control. 5) Keep yourself busy with something. It doesn't have to be work, it doesn't have to be productive just make it something. Anything that can momentarily take your mind off the pain is worth doing. If you aren't working make a daily schedule and stick to it regardless of how futile it seems. Right now I am kind of feeling rather hosed since I am seeing a headache specialist and a pain management doctor and neither really know what to do with me. I have had almost every facial nerve blocked with no success and am now about to start spinal nerves, which I am not looking forward to. I have a question: What do you guys do when your pain is a 10 and you can't get it under control? My pain management doctor has me going to the ER but that seems like an absolutely ridiculous solution to this problem. At the ER they give me a truckload of Dilaudid which helps a lot, but it seems like using nuclear weapons to kill a fly. It's also thousands of dollars a visit and that is just not a sustainable solution especially in the summer when my bad days increase tenfold due to changes in the weather. I have been presented with dozens of other emergency medications ranging from headache abortives to high doses of oral opiates but none of them break the pain long enough that my maintenance meds will get it back under control. At the moment I am just taking those days and dosing myself to the gills with valium and pot and hoping that the next day will be better, which it rarely is.
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Jun 11, 2014 18:58
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Araenna posted:Hydrocodone, flexiril, and willing myself to sleep. Like, straight up curling up, closing my eyes, and forcing myself to sleep through the pain. I think it's a learned skill or something. 6 years of this poo poo and I still have trouble forcing myself to sleep. I was in the hospital for a week at one point on 6mg of klonopin a day and was still wide awake the entire time.
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Jun 11, 2014 22:48
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brakanjan posted:For 11 out of 10 pain I avoid walking near railway tracks. But seriously for 10 out of 10. It is just me time and bear through it. Do something do everything that helps. I play games or scream or curl up in a ball and feel sorry for myself. My pain is not in my head but my whole body so I try to separate myself from it - er meditatively. Painkillers or Drugs work sometimes but they do not really get me through. Have you ever tried LSD for migraines, I am sure I read an article about that but I will need to dust off some old magazines to find it. But yeah when that super pain comes I have learnt not to fight it just to be a reed in the wind. I've tried LSD for the pain and shrooms neither did anything besides make me start tripping while also feeling like dying, needless to say it was unpleasant. I hate "losing" days to pain and I hate it even more when it is a bunch of days in a row, but I guess that's the way it's gonna be for a while. I just saw my neuro and he talked about getting me into a clinical trial so now I at least have a sliver of hope. Anyone around here actually been cured/fixed? How hard was it to get back into the real world?
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Jun 13, 2014 19:06
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