Migraine Headaches Support Group
Migraine is a neurological disease, of which the most common symptom is an intense and disabling episodic headache. Migraine headaches are usually characterized by severe pain on one or both sides of the head and are often accompanied by photophobia (hypersensitivity to light), phonophobia (hypersensitivity to sound) and nausea.
I have had this migraine- this SAME migraine, unabated, since April 14, 2014. On May 28, 2014, I collapsed at work, in the bathroom, and was rushed to the hospital by ambulance. While there, I had an ECG (I was fine), and was administered Maxaran, which did nothing for me.
Since then, I have undergone an EEG, and a CT scan, both of which turned up nothing in my head. I've undergone two separate Botox treatments (that's 62 injections in my head, y'all), which did not work. I've worked with a chiropractor (4 appts per week), a naturopath (monthly), done various diets to discover food triggers, worked with my GP, an acupuncturist, gone to the spa for some treatments, tried six different medications, and nothing has helped. I've been to the ER 17 times in the last year for pain management.
My symptoms are worsening. In addition to the hellish head pain (I have existed at an 8-9/10 these past two weeks, and at a 7 for months before this), I have worsening vision (double vision sometimes, or fuzzy/blurry vision, to full on blindness. I have tingling in my hands. I am sick to my stomach so often that I've lost 30 lbs in the last two months, from it. I fall down a lot... faint. Last time was down some stairs. Thankfully it was just bruised ribs and a twisted ankle. Scent, Noise, Light are the banes of my existence, and I want to murder my little dogs, because they're yappy things. (Don't get me wrong, I never would.) My hair hurts. My face hurts. I am irritable.
And I am depressed.
My POINT in this post, was to talk about the depression that chronic migraine, and chronic pain, cause.
Do you suffer from it?
For me, it's the feeling of uselessness. I can't be social as I wish to be. I cancel plans. I can't work - I am still on medical leave, because my short term memory is shot, I can't sit in front of a computer for long, I have difficulty focusing, I can't see, etc etc etc. I am being cared for by my wonderful husband, and I sometimes wonder what would happen if he were hit by a car or something. I'd be left alone, and disability doesn't pay much. I cry, ALL the time. From the pain, from the helplessness, hopelessness. From the feeling that it'll never get better.
Do you suffer this, as well? How do you handle it?
Since then, I have undergone an EEG, and a CT scan, both of which turned up nothing in my head. I've undergone two separate Botox treatments (that's 62 injections in my head, y'all), which did not work. I've worked with a chiropractor (4 appts per week), a naturopath (monthly), done various diets to discover food triggers, worked with my GP, an acupuncturist, gone to the spa for some treatments, tried six different medications, and nothing has helped. I've been to the ER 17 times in the last year for pain management.
My symptoms are worsening. In addition to the hellish head pain (I have existed at an 8-9/10 these past two weeks, and at a 7 for months before this), I have worsening vision (double vision sometimes, or fuzzy/blurry vision, to full on blindness. I have tingling in my hands. I am sick to my stomach so often that I've lost 30 lbs in the last two months, from it. I fall down a lot... faint. Last time was down some stairs. Thankfully it was just bruised ribs and a twisted ankle. Scent, Noise, Light are the banes of my existence, and I want to murder my little dogs, because they're yappy things. (Don't get me wrong, I never would.) My hair hurts. My face hurts. I am irritable.
And I am depressed.
My POINT in this post, was to talk about the depression that chronic migraine, and chronic pain, cause.
Do you suffer from it?
For me, it's the feeling of uselessness. I can't be social as I wish to be. I cancel plans. I can't work - I am still on medical leave, because my short term memory is shot, I can't sit in front of a computer for long, I have difficulty focusing, I can't see, etc etc etc. I am being cared for by my wonderful husband, and I sometimes wonder what would happen if he were hit by a car or something. I'd be left alone, and disability doesn't pay much. I cry, ALL the time. From the pain, from the helplessness, hopelessness. From the feeling that it'll never get better.
Do you suffer this, as well? How do you handle it?
But this on top of CFS and Fibro makes me near useless. I am depressed and find myself crying b/c my life is not mine to control. My body either. I feel useless, and worse, powerless. I feel like I am failing my kids and my husband. My boss probably hates me b/c I miss work so much and it's amazing that I still have a job. Not sure how much longer that will last. I want to get on medical leave, but have no idea how to go about achieving this. The doc resists. Completely. She has no interest in helping me find recovery time, probably because she works for the company. I am hoping my neuropsych will be more helpful in that regard.
How do I handle the depression? For starters, medication, but that only goes so far. I go to church and Bible study as much as I can. Sometimes I get to church and can hardly move or sing, but being there helps me. And I ask them for help. I am honest with my church and Bible study group about what is going on and they are surprisingly understanding and helpful. For you that might be a different group--family, friends. I don't have those nearby except at church. Let them help you and don't feel guilty.
Have you had your thyroid and adrenals checked? It's a simple fasting blood draw that can rule out the Addission's. My neurologist ordered a blood test for all autoimmune diseases before we started the shots so he could make sure there wasn't something else causing the headaches. I already have 5 autoimmune diseases from not being dx'd with celiac until I was 54, but I was born with it. Gave it to both my sons.
My depression has almost disappeared the less pain I'm in. I've been doing the depression thing by just trying to get through each day. And I do pray a lot. It seems you've tried a lot of things. This is just something I found that really aggravated my migraines. Chronic illness or chronic pain are going to have a real effect on you. Find a good Pdoc and discuss some drugs that can help you until you feel better. I hope you find an answer.
I so hear you and been here in this hell for, gawd, 30 years. Today is particularily rough because my Neuro seems to have given up on me. Stopped giving me Botox and I've had everything else.
I still work because I have no choice. On the weekends, beleive it or not, I dance my ass off on Friday night and Saturday nights for 4 hours to live blaring band music. I drug up, no alcohol, and sweat it all out. It is all that I have to live for. I'm like a butterfly because I stay away from relationships, but I dance with anyone that wants to but mostly myself. I've been doing this for years.
How I cope with my depression is by running through my pain full force with both fists and saying F U. Dropping to exhaustion so I don't feel anything emotionally during the weekend. Then Monday rolls around and I repeat my robotic life of distraction and pain. By dancing and saying FU, I feel I am stronger and in control.
I know I'm on a suicide track. I scuba dive when I shouldn't, drive dark country roads when I'm falling asleep, swim out too far and go into dangerous areas with a smile on my face. I don't have the fear that other people have. I don't know how to ask for help anymore.
It is my faith that one day, something else will happen and it will work out.
I feel useless, worthless, a burden, and I can see no end in sight. On top of that, worse (for me at least) is that I have developed a terrible temper. Everything makes me want to snap someone's head off. Everything. I have had anti-depressants for this over the past 4 1/2 years and none really cut it. Most just put me to sleep. It finally dawned on me that what I personally need are anti-anxiety meds to keep the temper in check. So I am now in month #4 of no meds waiting patiently for "next available appointment" (June 11th) so I can finally see a psychiatrist and begin the guessing game all over again.
My fiance is a saint. She's been here since day one of this mess and it makes me question if I would have it in me to stick around and put up with me if the situation were reversed - and I honestly don't know if i could. She's supporting us on a crappy job that she hates. We're one accident away from being homeless. I am acquiring a monumental amount of child support debt because between my doctors all wanting to pawn me off on someone else, social security not recognizing migraines as being a disability, and the courts deciding that someone needs to prove to them 100% that there is no chance that I will ever recover from this (really?) they just keep piling it on.
I do what I can for my family. I cook most nights (nothing fancy - seriously) I am usually left alone for about 9 hours a day mon-friday. So i use that time to "gather" myself and to recover. When my family is home in the evening and the weekends, I put on my big boy pants and my best fake smile, down a handful of Ibuprofen (still the only thing I have to take for my head) and pretend my head isn't killing me. When dinner rolls around, I often just say "I'm not hungry, you guys go ahead and eat without me". I have learned to breathe solely through my mouth so perfumes, lotions, fabric softeners, and other people's soaps don't send me off retching. I have learned to ignore the people at Wal-Mart who give me dirty looks for wearing my sunglasses inside the store. No, I'm not casing the joint, its just too bright in here and we need milk.
I will admit i am a tad jealous of the folks who have lost weight. With the constant nausea has come a very weird "almost" eating disorder in which I binge eat any time I don't feel like puking. Add to this my very low energy level and I'm about the heaviest I've ever been in my life. This is a lot of fun when the Dr says "you need to lose weight - you should exercise more" and i give then a blank stare ;-) I am currently working on it - but it is weird to suddenly deny your body food when its hungry when most of the time even the thought of food makes you turn a bit green.
Part of waiting to see the psychiatrist involved mandatory counseling sessions prior to even being allowed to schedule with the psychiatrist. (Yay bureaucracy!) At the last visit, the therapist asked me a question, which I thought about for a bit, answered, then put right back to him. The question was:
"What are you plans going forward?"
My answer was pretty simple: How do you make plans for going forward when there is nothing but "this" to go forward to? Its not like i can say, 'well, I think I will go back to college, get a degree in engineering, start my own engineering firm, move to Tahiti, and live out my golden years there' now can I?
My plans going forward are to wake up tomorrow, get out of bed, and to try to not do anything to make my head worse unless I deem it worth making my head worse. Beyond that, I will take the day as it comes and deal with it as best as I can. When I cannot deal with it, I will find someone who can help me deal with it, or I will go curl up in a ball on my bed. Those are my plans and they are the best I can do.
That's pretty much how I handle it. Oh, and I find myself yelling at the TV when I am able to watch it during the day... I watch things like Ancient Aliens... shhhh don't tell :-(
I can't take morphine because of the hallucinations it causes, so I content myself with a cocktail, which differs if I'm at home or in the ER. At home, it's 4-6 mg of dilaudid, 600 mg of Tylenol 3 (also called Ratio-Emtec), and 400mg of Midol. If I'm at the ER, it's Maxaran, Toradol, Dexomethasone, and Dilaudid. They are the only two combos that even knock me down a couple points on the pain scale. NOTHING takes the pain away... but when I'm down at a 4 instead of a 9, I at least don't want to kill myself.
We're good actors, the lot of us. We do our best and put that fake smile on, and put up with things that make us want to blow our brains out... because we feel we must. I've stopped trying to push myself anymore... because when I do, that's when I faint and end up injured, worse. I've had concussions from hitting my head on the way down, black eyes, fell down 12 stairs recently, etc. I can't drive, I can't bus by myself, so I'm home, in the basement.
Sucks.
I try to have a social life, when I can, and I'm waiting to bcome a patient at the Pain Clinic, so that I can learn to cope with it better, if they can't take the pain away... but it's so tough...