The ones that caused me to spend day after day in agony, the ones that turned me into an angry person when I have nothing else to be angry about, the ones that would cause me to hide from friends and family and workmates, the ones that left me in despair of living. The ones that caused me to attempt suicide in June and put me in the hospital for days. They have returned.
For four months I was on medication that seemed to be working very well. I went about three months or so without one–probably the longest headache-free time of my entire life. I was starting to improve in a lot of ways because of that, not just physically but mentally and from a self-improvement standpoint. I took two computer programming courses over the fall and did well on them. I was designing new things at work which were getting good reviews. tygre and I were growing closer and getting a lot of things done together. I even picked up a new hobby–Hold 'em Poker tournaments–and though I’ve mostly taken lumps and bad beats I’m learning and having some fun.
But the headaches are back now. I can’t even believe how I lived through these before. The pain is indescribably intense. I know consciously that these are the same level of headaches as I had before but, wow, the headache I thought was a 6 out of 10 before feels like a 9 simply because I’ve forgotten how bad they really were. I’ve woken up in the middle of the night and vomited just out of the pain alone twice in the past two weeks. My body hurts in all kinds of places because I shrivel up from the pain. Last week when I had a particularly bad one tygre noticed that I was hunched over so much she could see the top of my head (I’m six inches taller than her). Anything beyond very simple thinking tasks are beyond me–my new programming skills are often useless because I just can’t put together any code with these headaches.
So, I’ve got to hold out for another week or so. I’m not going to be able to see the neurologist until at least the week after New Year. All I can do is to hope that I’m not too incapacitated before then. Then we’re going to see what happens.
So many of you have been so helpful here and wanted to know how I was doing. I’m sorry things have taken a little turn for the worse but I’m hopeful that a new plan of medication will fix things. Sorry if I come off grumpy in the next few weeks…it’s hard to have a sunny outlook on life when it feels you’re taking bricks to the head.
Damn, that sucks Duke. I was having trouble with headaches (not as bad as yours, but bad enough) where I would wake up in the morning several times a week with a screamer which would last until about dinner time and nothing I would do would change this fact. Until a couple of months ago when I found my blood pressure too high and went on medication to handle it – the headaches have stopped. So, one of those meds has fixed the problem for me after despairing of ever getting rid of the problem. So, keep up hope that the doctor’s can find something to help you. 3 months with no headaches is pretty damn good and would seem to indicate they are on the right track. Good luck!
Sorry to ask, but it’s taking me forever to try and find that old thread…have the doctors said what they think is causing these? You’ve got my sympathy…I wish it wasn’t so totally useless.
I’m sorry you’re feeling worse, Duke. Hopefully the doctor will be able to come up with something that works, or to figure out what’s the trigger which caused them this time, in a short time.
Are these cluster headaches? I’ve heard that they are just about the most painful thing people can experience! I have the occasional migraine and mine are relatively mild, and even those make me feel like I’m dying!
I hope you can find relief soon. There is a fair amount of research into drugs for migraine and cluster headaches, and some of the triptans might be promising for you.
You might want to consider keeping a headache diary to help with a diagnosis and treatment and perhaps heading to the ER if you have to get relief. It’s easy to forget from one time to the next what was happening and the circumstances around the onset of a headache, but if you or your SO could make a quick note of it, you might be able to find a trend that could help the doctors help you.
I can empathize completely. Intractable headaches make life unlivable. I’ve never been closer to suicide than I was when I was in the midst of a week-long migraine that kept me from being able to do even the most basic things; like eating or sleeping. I hope you find relief.
Thanks for all your good wishes. Things have improved a little over the past few days, as I haven’t had any real whopping headaches. I was very lucky today and managed to get an appointment with my neurologist on Friday morning (someone else cancelled right before I called apparently), so hopefully he can tweak my medication.
Dung Beetle, I’m still not sure exactly what causes my headaches. I suppose one of the problems with the symptom is that it can be triggered by so many different things. I have had some extraneous stresses, but nothing too much more than in the past few months. I’m usually set off by hot, muggy weather and blazing sunshine, but the weather here in western New York has been just above freezing and damp with a lot of clouds. I might have to go back to the food diary to see if I’m eating something I shouldn’t be, but it’s not as if I’d been binging on oranges, seafood, and red wine (man, it sounds like my head just started hating on Spanish cuisine).
I suppose the relief is that now without the programming courses I’m not coming home and working another three hours some days on top of my main job, so I’m not trying to pull an 11-hour day with my head in a vise.
That neurologist appointment can’t come soon enough…yesterday I was hit with a particularly bad one. Probably about 9.5 out of 10, if I was counting pain on a scale. My whole body still hurts from it, literally down to my feet. I’m back to work but let’s just say I’m dreading putting in some actual thought after my database pull finishes. I still can’t believe I actually put up with pain that bad for day after day last summer–at one point, over three weeks in a row.
I’ve been there with the migraines-- curled up in a fetal position, the whole deal. Doctors evidently couldn’t find anything.
Then I lost a whole bunch of weight (not related) and they went away. It wasn’t until after that my new doctor said it wasn’t uncommon for weight to effect migraines.
If weight isn’t an issue, it couldn’t be something related like blood pressure, could it? I know it’s sort of grasping at straws, but I know how bad they are and how much you want them to go away. Good luck!
Duke, have you been seeing a headache specialist or just a general neurologist? I went through 3 months of daily 11 out of 10 headaches years and years ago before I finally saw a headache specialist and got a proper diagnosis. I believe the doctor who treated me has gone to the great beyond (I’d bless his soul if I believed in blessings or souls), but he was able to properly diagnose and treat my headaches because he had specialized knowledge. It sounds like you need a more thorough workup and a better diagnosis so you can find some relief. Nobody should have to suffer with pain like that.
I have no way of knowing what you’ve already tried, but it’s really worth it to pursue every possible avenue to find a solution. In my case I had to borrow money from my employer (not the company, the actual person :eek:) because the headache specialist was outside my insurance network, but it was the best $200 I have ever groveled for.
Right now I’m seeing a neurologist who only works with headaches–it’s a specialized headache clinic. A few people have suggested I go to the Cleveland Clinic, which is about six hours’ drive from here. If things don’t improve soon I’ll be getting there, I think.
This morning the neurology session went fairly well; I felt I was listened to and they’re willing to look at a number of treatment options. Since my migraine from Wednesday was still lingering they ran a steroid infusion, so now I’m all ready to go out and hit a few performance-enhanced, uh, data analyses. I’m also booked for a sleep study in a couple of weeks. Doctor thinks my sudden onset of snoring (which tygre has noted recently) might be related to this. We’ll see if it’s correlation or causation. Then I get a followup visit in a few days.
For the moment I’m at a steady baseline in that only parts of my body hurt. I’ve been promised a pie this weekend (but I am not going to eat all of the pies) and poker next week so I’m feeling in a better mood.
Mrs G has suffered through similar, the source ultimately being a Chiari 1 malformation. It literally took 2 years of specialists and neurologist-hopping to diagnose. Mrs G just finished tonsillectomy/decompression surgery a couple months ago and is improved greatly.
Worth asking the question of your doctors, especially if you haven’t had a cranial MRI done yet.
Sleep study is coming up next week. Meanwhile I’ve been holding on. I haven’t had as many headaches but the ones I do have are weird ones, with almost more body pain than head pain. Strange that I feel like my right shoulder blade and the arch of my left foot are being stabbed, while my head has a mere dull ache.
One of the things that the neurologist suggested was to try to lose weight, which he thought might cut back on the snoring. The good news is that I’m down about six pounds in two weeks; the bad is that I’m hungry a lot of the time, and irregular eating habits have always been a trigger for me. So it’s a juggling act between eating less, but still eating just as often. My target weight is 200, which is about as low as I want to go as someone who’s 6’3"; 28 pounds to go.
I’m going to look into the Chiari malformation information. I had an MRI some time ago for my migraines and that wasn’t found; you never know if the neurologist was looking for it specifically though.
I’ve had some stress over the last few weeks and I’m not handling it well; I’ve been pretty agitated as of late. I have some things to do to help that, but I know that’s bringing migraines on. I’ll be looking for some more solutions I think.
Probably not the kind of steroid that does performance enhancements, I suspect (i.e. prednisone or some such vs an anabolic) but anyway, I hope it was helpful.
My brother-in-law suffered from such severe cluster headaches that he would pound his head against the wall - I guess that felt better than the headache itself :(. I do know he got some relief from using oxygen at the start of the headache - something about the high O2 levels can sometimes interrupt the process. Is this something your doctors have mentioned?
Good luck with the sleep study. Even if they don’t find apnea, they might see some other oddnesses that give them ideas for treatment.
I remember your original thread, Duke, and I’m sorry to see you’ve had to start another one. Best wishes to you and yours, and I hope the pain goes away very soon.
(i.e. prednisone or some such vs an anabolic) but anyway, I hope it was helpful.