Dear Terri,
I did not see that article, but oh my God! Do things this barbaric still happen to patients with Migraines!? I was so glad when they finally called it a Disease!!
I am so glad Teri that you are giving so much Light and Attention to this terrible disease where patients are still being undiagnosed and in some case not treated kindly.
Teri, may you always continue to encourage others as you are doing right now.
Sincerely,
Tobysunny
Hi, this touched me so much. I did not have migraines till 10 yrs. ago, not even a headache( I'm 62!). I feel for this mother so much; I had over 300 days/nights with migraines in 2005 and I remember twice I told my husband that I wanted to go and be with God. I can only imagine how she, as this mother, must have felt.
It was only because of our faith, after 2 neurologists said it was hopeless, and I had to retire early from a job I loved, that we never gave up, no meds would prevent them and finally only one kind would stop them. I had to keep praying, telling myself things would get better, one day at a time. It has gotten better - found out that I am also gluten and lactose intolerant; still do have them often, but not as much as before. I can only take the one abortive that works, watch symptoms and pray myself through the episodes. My heart goes out so much to this mom. My husband said it was the worst feeling in the world, to not be able to fix the pain.
When migraines turn into chronic or even near-chronic pain, even coping skills may not be enough. Teri is right - you need support from your physicians, your family, but mostly you need it from YOU.
As someone who is hopefully recovering from a multi-year bout with chronic migraines, I can tell you that two things kept me alive. (1) One was my belief in my hopeful faith (in my case, my belief in Jesus and the coming kingdom of God)
(2) The second was my realization that only I could keep myself alive and get myself well by TAKING CARE OF MYSELF [the wisdom that death wouldn't actually stop the pain, just transfer it on to others is something I think younger folks might not have the actual experience to really understand, at least I sure didn't]
ALL my physicians certainly were missing the mark on helping me cope with the chronic pain, much less coordinating my care to get me well in the quickest amount of time. My family and friends could only support me so much, as they couldn't make the pain go away.
ONLY I could do that by following the physicians' medical regimens, doing my own research, avoiding certain foods, regulating my sleep patterns, putting myself in a healthier routine every day, exercising, actually RESTING when I wasn't in a migraine. You know, taking care of myself.
When you have a migraine, you're tired afterwards, but usually you have a reserve of energy. After a couple of migraines close together, that reserve is depleted, and after a couple more migraines close together, that reserve is gone. After a couple of more migraines...you get the picture or live it.
So take care of yourself. Take the time to rest, take care of yourself, build up the reserves so you can push your doctors into taking care of you right instead of just in/out like the insurance companies want.
Because, the alternatives...
I send my deepest sympathy to the mother who lost her son to migraines. Though I will not attempt to push my religous beliefs off on any one else, I have to say that my faith in God and my support from my family, (both close and church), that keeps me going. So many times I am in such DEEP, EXCRUCIATING pain, that I think it would be so easy to swallow a bunch of pills, then it would all be over.
I choose to face the pain, hang in there, research. Days like today that I am pain free I celebrate, but at the same time, I know that the barometric pressure is going to change again tomorrow and there is NOWHERE that I can hide. No medicine that I have tried to stop the pain from coming.
My heart goes out to you.
terri mealer
I just found this thread and I am in tears. I am on the edge of giving up, I have been dealing with chronic debilitating migraines for over 7 years. I have strokes and seizures that are migraine induced and live in constant pain. I am a single mother and I had to move in with my parents. I am currently unable to hold down a job and had to leave school due to my health problems.
Suicide is never far from my mind.
I hate even writing that but it is my current truth. Reading that others feel the same is a comfort but also breaks my heart and makes me livid. I have seen so many specialists and been on just about every common medication currently used for migraines.I live in literal darkness because light is a trigger, sound is a trigger and smell ( one Dr. laughed as he said "you have every trigger in the book!" as if aw shucks, that stinks ) I have tried accupuncture, massage, physical therapy, counseling, anti depressants, TENS unit, nerve block injections and botox therapy. I am scheduled for RFA ablation next week. I am out of money and hope.
Sorry to have written so much about my problems just now. I have never posted anywhere but this thread touched me deeply.
Migraines KILL, they kill slowly in the form of humiliation and shame, loss of a normal life and normal joys. Migraines kill families and friendships and they kill life dreams. I feel as if I have been slowly and painfully dying for years and yet most of society thinks I should just take another advil and deal with it. I am treated as a drug seeker, attention seeker and liar from Dr.'s and ER's. I have pupils that constantly change sizes and stroke induced atrophy in my back and neck muscles as well as many other visible and documented symptoms. Yet I am still treated as if I am over reacting and am crazy. I don't know what else to do and how much longer I can go on dying ignored. I live for my child but I feel like it is selfish to put my child through having this kind of parent.
Thank you for letting me vent and for letting me know others really do understand this hell.
Your story is a duplicate of my son's; I saw the life literally drain out of him over 13 years. He graduated college with a 3.98 GPA, started and ran his own highly successful business, had a million friends and interests, and excelled at everything he tried-----and also had the gift of a wonderful, loving wife and beautiful children. For the past 2 years he was on full disability, lost over 50lbs, and was dependent on, and ravaged by the awful drug, Oxycodone. As much as anything else, the Oxycodone killed him, as it took the spirit and joy out of the man I raised.
He often said, "I have a perfect life, but cannot live it"----we seldom saw him leave the darkness of the closet in his bedroom the entire last year; one day he vomitted 41 times from the migraine pain. He was NEVER without a hat and sunglasses, even inside.
This must depress you further; and that is not my intent. I want you to know I hear you Loud and Clear. Please get more help, education, and anti-depressants for the horrendous battle you are raging. There can be no hope or help if you give in; life is always the better choice, as tomorrow there may be a new discovery and you will again be your vibrant, healthy self. Live for that, and for your child----never give up.
My son was very open with me the past year about his desperation, and I had to tell him I would be ok if he needed to leave, but I knew I would never be ok, and I am not ok. I just could not burden him with worrying about me; he had enough to deal with from all the pain, and fighting to stay here for his girls. In the end he saw himself as a burden, but of course none of us ever felt he was a burden; his DEATH is a burden almost too heavy to bear, and I worry every day what it has done to his girls.
Please just for today, choose life; and if you do that every single day, then you are a survivor, and a hero to your family. Please, also do it for me-----I want to think that this story could at least save another precious life.
Im glad that this issue is being addressed - I have suffered migraines my whole life, and I just "dealt with the pain" untill they (migraines)went out of control when I went into menopause. Both of my children suffer migraines now. I tell my daughter to learn to control them, eat correctly, and find the right medications to help her (she is 14 now) but she continually says "I will just deal with the pain" -- no matter how bad it gets, or how much she throws up. I am saddended to show this to her, but hopeful that she will realize the severity of her situation. I tell her she does not want to end up like me -- ignoring my problems for so many years I think may have brought me to the place I am now. I hope that something can be done to help with this. Topomax has made a big difference to me, however I am careful with many of the other "approved" migraine tratments due to the threat of strokes and the long history in my family. Sometimes I get so depressed living this way I feel as though I live some sort of half life - almost a sub-human culture where I cannot do any of the things with my family and friends I want and need to. I feel my children especially have been cheated out of so much - especially the happy fun mother they should have 100% of the time that I am only able to give them 30-40% at 1/2 level.... The depression is real. As a 40+ woman I suffer this daily. I can't imagine how tough it is for a teenager. I was lucky enough to find a doctor who understand this -- before I felt like my neurologist wanted to be rid of me -- that all i ddid was whine, and that the feeling was "I just dont know what to do for you" Someone needs to take this seriously...
This is one of my big worries now-----will my granddaughters inherit this dreadful disease???? Will research money ever be devoted to this monster that robs families of any semblance of normal life? It is too bad the pain does not cause our heads to swell and burst open-----then the docs could see the horror, and know something MUST be done. My son always said if he could live without a head, he would gladly have it amputated----- I believe every migraineur would agree. I am hoping there is help for your family in the very near future. I can barely stand to hear the word migraine these days..........
I get so frustrated when doctors do not try some of the more unusual, off-label medications to treat migraine. I had migraines for 35 years, many of them so severe that a trip to the emergency room to have injections for nausea and pain were necessary. Then my Group Health doctor put me on a medication for depression, Nortryptaline, and I have not had a real migraine since. Yes, I may have to take it for the rest of my life, but at least now I have a life. My daughter's doctor put her on an antisiezure medicine as a preventative and it works for her almost as well. She sometimes has a less painful and shorter migraine, but it is tolerable. Please, ask your doctor about some of these meds that prevent migraine. Get your life and freedom from pain back.
I am sorry to hear about your loss. I will keep you in my prayers. A lot of people do not understand that when you say you have a migraine they think it's just a headache and take something and lay down but it does not work that way. I have been suffering since I was 15 years old (now 42 years old)and I still get them and on top of it all I also have Multiple Sclerosis. ( talking about pain). We who suffer are in so much pain that we can not describe it. I am glad that my family doctor had them at one time and he understands the pain that we go through. I have been home all week (sun) with one and have been taking Tylenol 3 every 4 hours and just today I am starting to feel like me. This affects my job and social life. I know that there is some natural herb out there along with prayer that can help us.
Terri please keep strong and know that your son is not suffering anymore.
I am so sorry for this mother who is grieving the loss of her son. I feel like crying out "Why didn't someone help him?" Part of the answer is that many, even caring, physicians have never had anything like the pain that some migraine sufferers endure so they cannot understand it. I have bilateral Trigeminal Neuralgia, in addition to chronic migraines. TM used to be called "suicide disease" because people would kill themselves over the unbearable pain before modern medicine found therapies for it. In TM the nerves that serve the face get hyperactive with pain which is often mistaken for some sort of tooth problem but it isn't. The treatment is taking anti-seizure meds. I haved to take Topamax for the pain on my right side of my face and Tegretol for the pain on the left side of my face - no one knows why. Topamax has not stopped my chronic migraines, but it has done something for them. The worst migraines I had I called "Paralyzing migraines." I would awaken with them and it was so bad that I could not open my eyes, move my head or any part of my body; I could not call out for help or do anything because the pain had me entirely paralyzed. I learned to keep Zomig or Maxalt chewable tablets where I could feel for them with my hand and take one. I would be in bed all day and have to be carried to the bathroom by my husband. After taking Topamax for a while I no longer had the paralyzing migraines, but it did not change any of the other terrible ones, still, that was a HUGE improvement. Recently I made a big mistake. I ran out of Topamax and it was about 4 days before I got mine refilled. Not only did I spend an entrie week in bed with migraine pain and nausea I also had several small seizures, so if you are on an anti-seizure med do NOT miss a dose! I never will again.
I tried taking Imitrex because it has a generic and is cheap but it just does not work for me. Only Zomig and Maxalt help me and sometimes I have to take 2 Zomig in one day, which is allowed but they cost over $5 apiece. Good luck everyone.
Happy Mother's Day to all you moms! I woke up early this Sunday morning only to have a terrible migraine to strike, of all days! sitting here in bed as I type this, it makes me sad to even think I might have to deal with this pain the rest of my life. I won't let migraines take my joy away! There are days I feel hopeless, but I look at my three daugthers and realize how blessed I am, which makes me that much more want to find something out there that will give me some relief. I was diagnosed with chronic intracatable migraines. Right now I take fioricet, zanaflex, tordol, but nothing is working. I can't take any of the triptians because of their side effects. I've tried DHE which was short lived, also just had a round of botox injections and that did nothing. I know there has to be something out there that will help me. Never give up hope!!
Blessings ~ Cindy
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Thank you Teri for posting this. When you post about such a touchy topic it helps to break the stigma attached just a little more every time. These posts always touch me having gone down that road before. And I can understand some of the pain that it causes the family. So thanks for raising awareness that support and coping skills are so important. You couldn't be more right