Well, since I've been off all preventatives, daily headaches have been better (I think). Only now I'm experiencing the real full-blown migraines. The good news is that at my last visit with the doctor, we decided to try Axert and a miracle happened - it proved to be helpful! I don't have near enough though... 6 won't keep me through the month. I know you can't take too many to avoid MOH, but I need more than just six. Lately, with hurricanes in the air, the heat, the stresses, poor sleep, etc. I've been getting migraines every other day with the nausea and dizzyness remaining in between.
So back to the title of my post and the explaination as to why this is a gripe... I still don't believe that in 2007, people would still be so misunderstanding as to how painful a migraine really is. On Wednesday, I was locked in my room all afternoon/evening, a wet cloth over my eyes, my hands over my ears, the blinds pulled down, the door tightly shut. The next morning, when asked how I had slept, I answered that it hadn't been a very good night. It was then that I was told that at least I had gotten to 'sleep' many hours during the day. I tried to explain that I hadn't exactly been sleeping... only to be treated to a "But still"
Grrr, just makes me mad.
Dear Jenn Bee,
I could definitely relate to what you said. People feel like, certainly, you should feel better since you spent the whole day in bed. For the most part, they do not understand that for most of that time, you were almost crying, praying for the pain to go away and even going so far as to beat your head on the wall to ease the migraine pain. I would rather have had the pain from a wound on my head than the pain of a migraine. And sleep? What sleep? When I have a migraine, I cannot fall asleep. The pain is so awful, it won't allow me to go to sleep. I would pray for sleep to come to get some relief, but it was always elusive.
One time when I went to a doctor for this, he gave me a prescription for two - yes, you read that right - two sleeping pills. He was thoroughly convinced that I was drug-seeking, and he was not about to "feed into" my drug-seeking behavior. He was willing enough, however, to give me 2 sleeping pills to help me fall asleep. Of course, they did not work, and I was left in pain until I was taken to the ER and given a shot of something so powerful, that it knocked me out for 36 hours. What kind of way is that to live? Comatose for 36 hours without pain? Or, alive and awake for 36 hours, filled with a pain so unbearable that no one except someone who has been through it, can understand how intense and deblilitating it is?
Yes, I can definitely relate to what you went through. Family members DO try to understand. Unless they are particularly empathetic, however, and trust you at your word for what you are saying, they cannot understand what you are going through.
I guess that's why we have forums such as these. People here UNDERSTAND what we are talking about when we talk about migraine pain. What a relief to have such an understanding audience!
Thank you for your comment.
Sorry to hear about that horrible doctor! I guess that what frustrated me the most about this time that was made to me was that I had been staying in a crisis centre for a week, and it was one of the workers who made this remark. Is that a way to encourage someone who is already at such a low-point that they are not safe in their own home? Had I been at home during this episode, the wall and my head definately would have come to know each other very intimately.
I am usually pretty patient about people not understanding... but with the years, my patience seems to be running thinner and thinner. It is great to have a place like this.
Good luck :)
Dear Jenn Bee:
You are welcome!
Just a quick note before I go to bed in preparation for a long work week.
Sad, but true, sometimes the professionals from whom we seek help and support, can be the worst when it comes to providing that support. Unless they have experienced migraine pain for themselves, they only have "book knowledge" to guide them. And while I have nothing against book learning, it simply cannot convey the true feelings of a person who is having a migraine.
Sometimes, I think the professionals subconsicously avoid dealing with our pain because it hits too close to home - it's as if they fear that they, too, will have migraines one day and, by avoiding talking about it at any length or associating with migraineurs, they can ensure they will never get it. Irrational, perhaps, but it does happen.
I had a boss once (in the human services field) who admitted to me that she no longer liked me the way she once had, because she found out I had bipolar disorder. She told me it hit too close to home in her own life and, that by being around me, it only reminded her of where she could end up, if she were not careful. She eventually fired me. As hard as it was at the time, it turned out to be one of the best things that could have happened to me. Still, we were in the disability field of human services, and you would have thought she would be more compassionate and understanding.
I am a firm believer that the best people to have working in the field of migraines (or in any other type of disability or condition) are those who have experienced it firsthand, themselves. That way, they have the book learning AND the personal experience, which makes them truly knowledgeable - both from books and from "the street". They are much more well-rounded individuals who can really relate to what their patients are going through.
Another thing I have found is that many people working in crisis centers or halfway homes or group homes, are paid minimum wage. They are often picked up from off the street, with little or no real qualifications for the job. Good people are hard to find in the human services industry because the pay is typically low and employees are overworked.You can find quality personnel (sometimes) in a private, psychiatric or pain hospital, than you will in residential settings for people with migraine, bipolar or other conditions. If you can, surround yourself with positive people who have personal experience with migraines and/or with people who are truly empathetic, they totally believe you when you tell them the extent of the pain.
There are some doctors out there who do a wonderful job of relating to their migraine patients, without ever having had to experience a migraine. These doctors are exceptional and they are rare. If you can find one like this - or even better, find one who also experiences migraines firsthand, get on that bandwagon and go for it!
This is definitely a subject I could write all night about, but time is getting short. Just out of curiosity, how did you manage to get placed in a centre? Did you go through your doctor to get admitted or did someone else help you out? I have spent many, many occasions in hospitals for bipolar disorder, broken leg, gall bladder surgery, cesearian section, tonsillectomy and drug/alcohol abuse and migraines. The best care I got for for any of these conditions was from the professionals who also had personal experience with what I was going through. This was true, regardless of whether or not the hospital was private or state funded.
Well, I am fading fast, and my eyes are starting to droop. I must go, now, until the next time. Here is hoping that you will get reflief soom, very soon.
I agree completely with you... you can't truly and fully understand something you don't know. First-hand experience is the best way to be helpful and comprehensive to someone in need.
The employees in this crisis centre are *usually* very helpful for me. They have big hearts, a warm smile, and are very willing to help.
My social worker suffers from migraines - but sometimes I find that she understands less than others who do not suffer from migraines... When I told her about the chronic daily headache, she smirked and replied she'd never heard of anyone having a headache 24/7. It seems that she blames me for these. If I tell her I spent too much time on the computer, that's not good for the headaches; if I did more excercise, these would improve a great deal, etc.
I was placed in the centre last month because I tried to kill myself.
The hospital sent me there. At first they wanted to send me to another crisis centre, but the guy who came to the hospital to meet me had worked at the one I went to when I was there three years ago and he remembed me. So he thought it would be better if I went somewhere familiar. I returned this last time because I was a danger to myself, so they offered I come back. They said I can call anytime if ever there's anything.
I must admit I was very glad to go there... it is a great alternative to hospitalisation. It allowed me to keep my new job, go home to take care of my cat, and not have to tell family members what had happened.
Thank you for your comments and well-wishes. I can see you understand the reality of mental-illness, migraines, and the system. I wish you peace and relief as well.
Take care