This is not the life I signed up for! My husband & children didn't either!

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Wed, December 03, 2008

My name is Stacey and I am 41 years old. I live near Richmond, Virginia.

I have been living with migraine since late childhood. My attacks have been getting more frequent and longer for the past couple of years. I was recently diagnosed with "Refractory Migraines", meaning they don't respond to treatment. My new neurology doctor admitted me to the hospital for IV Treatment with DHE45. I was in the hospital for 5 days. They have become worse since I was adminitted on 11/21/08. I finally heard back from the doctor's nurse today and the doctor thinks that he has tried almost everything that can be tried. He will try to see if I qualify for Botox and get back to me. Basically left me with no hope for improvement.

I know that migraines and depression often go hand in hand. Which comes first? For me, the depression comes during these long days and nights of pain. Times when you can't think a clear thought; times when you are stripped of all dignity; stripped of even hope.

Now between trying to function at work, deal with the pain, I will be doing research again. Looking for a ray of hope; looking for some new treatment; and yes for a new doctor.

If not for my wonderful husband and supportive kids, I think I would be crazy by now.

Thanks for taking the time to read my first ever public post/blog. I will appreciate any and all responses, suggestions and referrals.

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Anonymous

12/ 4/08 12:46am

I share your pain. I am a 27 year old female and I have been suffering with chronic migraines since I was only 12. I was diagnosed back in Mexico at the age of 13, they seem to go away for a while but when they come back the get stronger. I absolutly hate when people think you can fake such a painful thing or when they compare it to a simple headache. But what I hate the most is that I feel that I can't even be in control of my own life. But I try my best, my husdband is very supportive and takes care of our one year old when I lay useless in our bedroom for hours. When the pain is absolutly unbareable I noticed ice helps a little. try putting some ice cubes in a plastic bag and put a cloth over them and place them over your head where the pain feels the worse. in general something really cold seems to nomb a little

take care

monica

staceygray

12/ 4/08 2:14am

Hi Monica,

I am sorry you share my pain. This is not something I would wish on anyone! Not even my children's stepmother Like you, people who don't think I am really sick (because they can't see or understand it) leave me with little patience. The biggest culprit of that in my life is my mother. She thinks I am sick because I want sympathy. These run in my family, but my mother doesn't get them. Her sister does and her brother did when he was alive. I have four first cousins who suffer and now both of my chidlren are starting to get them more frequently as well. In our family, a lot of us seem to get the really bad ones within a couple of days of each other. Atmospheric pressure? Genetics? I'm not sure, but it's definitely something to think about.

As far as my mother goes, sympathy is not what I want. I want hope and understanding. Not just from her, but from medical professionals and the rest of the world.

Take care,

Stacey

luckieian

12/ 4/08 4:09am

Hi stacy, just read history of Migraines. It really can be a nightmare for the sufferer and our family. Half the battle is with the doctors who dont understand that taking an asprin and chilling out isnt on the cards, your head has different plans than you. I now take Imigran injections which i do myself as well as morphine strength pain relief. My whole family has suffered from this and we found that getting your hair dryer putting it on heat and point it at your face or the side of your head can bring about instant relief far better than any pill. Let me know how you get on. all the best, Ian

ozarkldy

12/ 4/08 9:05am

Thank YOU Ian! The hair dryer is one I haven't heard of but definitely sounds like it has potential & will be tried! I've had migraines for over 30 years since I was 10 (at which time Dr's said I wasn't old enough for any medication) So, I would lie in my bed & cry & wish someone would cut my head off, being unable to stop myself from it. Eventually I got old enough to exert enough control to keep still so I wouldn't make them worse.

Here are some things that have helped over the years... perhaps everyone already knows them, perhaps not, so here we go... In my 20s a pharmacist friend taught me the chemical combination of 1500mg acetaminophen + 400mg (now I use 800mg tho) of ibuprofen taken all at once would often kick them out. Just be careful you aren't taking other acetaminophen products simultaneously or throwing alcohol on top of it because you don't want to overwhelm your liver. EX: if you're taking a vicodin at the same time, then decrease the 1500mg of acetaminophen accordingly.

The next trick I learned... which incidentally I found to be helpful when I was pregnant & couldn't take most meds & also VERY EFFECTIVE on my kids especially my oldest son who started getting them when he was 5... At the outside crook of your big toe there is an accupressure point that will just about lift you out of your skin if it's worked too hard, so don't be too rough & obviously it works better if you have a sympathetic other to do it for you. I know the web between thumb & first finger have been talked about for years but that never did a thing for me.. this toe spot, would A: usually be worse or even only hurt on one foot & B:always give at least a little relief if only for a while, so worth it! NOTE: If you have a vomiting migraine this trick may increase your nausea & cause a chuck or two initially... try to stick with it, that seems to be like a shocker to your system that takes a bit for your body to acclimate to. NOTE2: If you have a migraine & the spot on your toe does not seem at all sore, feel around that area & check both feet because you likely just have the wrong spot. I say that because over the years I've never met anyone w/migraine who didn't find that spot to be a lulu on one toe or both but it is in a very specific spot so if you're even a little off you won't feel it... you'll know when you have it!

About 10 years ago after a car accident (not my fault) I started sometimes getting what I call 'snigraines' that seem to be a migraine & sinus headache combined. At their worst I cannot move because the slightest movement will start me vomiting... I've literally camped by the bathroom stool during some of those. I did finally learn that if I throw my max of medication including the acet/ibupr. increment PLUS a sinus pill I can tame it or kill it.

2 years ago after another car accident (again not my fault) I instantly had an aura migraine beginning which since my man was in the drivers seat & our 5 month old was in the back was absolutely terrifying because I couldn't see to tell if any of us were alright! It lasted through my first 3 days in the hospital including a round of surgery where I was totally out... still had it when I woke! I ended up finding a massage therapist who was willing to come to my hosptial room & work on me. The first session gave me some relief though I was so battered in so many spots there were a lot of things she couldn't do. Still, I had her return every day for the next four days & each time offered me a measure of relief!

Lastly I recently went on the hunt for accupuncture/accupressure points as I once had a chiropractor who did nothing but work various 'twin' points on me & I found that to actually give a lot of relief. Any rate, I found some sites online that showed the accupuncture spots & several specifically mentioned headaches. Two I found quite effective were one, just past the top of your head where the dome begins to slope theres a diamond shaped pattern of 4 points that can be helpful to massage. Two, just behind where the shoulder seam of your shirt usually lies will be a sore spot, you'll know it when you feel it & then it follows a line down the outside of your arm to your elbow. Again, you'll feel it when you have the right spot!

I hope some of these things are helpful to other people because the bottom line for all of us is sharing what we've learned is likely bound to help at least someone out there...and for all those who deal with skeptics, unless you have them... you haven't got a clue of how horrific & debilitating the pain can be. Just try not to let them stress you during an episode cause you know it'll only make it worse!

Stephanie ~ ozarkldy.com

Tana

12/ 4/08 9:48am

I have lived with migraine all my life, I'm 62. The tricks we try! One of the best for me is to go swimming in cool water, in the mid 60's - -sounds awful but it really helps. Ice packs on your neck and head also numb the pain but do nothing to get rid of the headache. 1 Chiropractor I saw was able to adjust my migraines away but others have made them worse. Also, 1 massage therapist I know can get rid of a bad headache but it takes a long time, 2 hours sometimes. I have had success with acupuncture too.

I think we need to be doing alternative therapies along with medications and do we need to talk about diet and a healthy lifestyle?

Talking with other migraine sufferers is HUGE. This sight I have found to be very supportive; just to know other people will respond and understand and may even have a new trick or new med to try.

Keep trying. Any time you have days without a migraine it's worth all the searching.

UpStateKate

12/ 4/08 11:30am

Stacey - Indeed, those who haven't experienced this invisible mugger do not understand just how brave and amazing you are! The mom of a young child, and you mention that you are still working! Please consider seeking another neurologist who specializes in Migraine - and in the meanwhile, have you also looked at your personal triggers? I was surprised, in my 40's, to learn that I had some very real food triggers, by doing a rice elimination diet - under the instruction of an allergist, but you don't need a doctor to do this, where you add one food at a time, to see what may trigger migraines for you. I was surprised to learn that corn, oats, peanuts, milk, citrus fruits, food preservatives, msg, and sadly, chocolate, trigger severe migraines the same or next day for me. I still get migraines, but at least I'm not also "firing" off additional ones, and it gives me at least some feeling of control.

Migraine may not be visible to others, or completely curable, but there are new combinations of drugs and treatments coming out everyday, and exceptional, caring supporting people and professionals to help. Its hard to "count your blessings" or plan your strategy when you're in the middle of a cloud of aura stars and pain, but when you catch a blue sky break - breathe deep, and work on building your building your support plan. Take care! Lynne

Leslie8248

12/ 4/08 3:15pm

I am so sorry to hear about your story. I am 31 years old and have been suffereing from migraines for about the last 16 years. When I became pregnant with my first child I stopped having them- didn't have them again until after I deliverd my 2nd- about 12 weeks ago. Since then I have been having them on a daily basis. I am so depressed and stressed out about this. i am missing spending time with my family and time from work. I can take Relpax which alleviated the pain- but i know with the frequency I should not be taking it every day. I have an appointment to see a neurolgist (about the 4th one I have seen in the last 15 years) and am somewhat hopeful he will be able to find something that helps me. I am very sorry to hear that you are suffering- but it is somewhat comforting to hear that I am not alone.

Teresa

12/ 4/08 9:32pm

I'm sorry you have to deal with the pain. I understand what you're going through. I'm in Va as well. Mine got worse when I turned 40. More on my page. Too much to type here. LOL

Hope you're having a migraine free day.

Teresa

Liz

12/10/08 2:53pm

Hi Stacey,

I too have had migraines for 25 years and i am 48. It is awful and i know how you feel. I love this site it is nice to talk to people who actually know how you feel and don't think it is just a headache, that really angers me.My husband has been so supportive also and even my dog knows when i have one. That is just crazy she will just lay beside me and won't leave untill i feel better. I hope some day we find a way to manage or completly rid ourselves of them. Hang in there.

Liz

Migraine Mom

12/25/08 11:11am

Dear Stacey,

Living with migraines and doing all you do - wow - you are one powerful woman! I hope you have a good migraine specialist that LISTENS to you and crafts treatments for YOU, not just passes their drug du jour. My daughters migraines (last 12 years) have been a family affair and eventhough it's not what your want for your family, that's the way it is. A few suggestions/words of caution: It has been our experience that over a long period of time drug therapy changes, escalates, and ultimately becomes part of the problem, so it is vital to have a medical specialist with extensive knowledge and a philosophy that keeps you away from the rebounding and opiate drugs and also embraces alternatives. My daughter's experience in a nutshell: migraines since childhood - a couple a month, escalating in teens to once a week, continuing to morph into chronic daily headache with a migraine each week that would last 3-4 days. Has been on/tried different preventative and abortive combinations/nerve blocks with only minor relief, culminating with 2 ER visits a few months ago. Long story short, a new MD at our headache center took her off everything except elavil to detox from all the drugs that cause rebounding and we added alternative therapies - an ND who is doing homeopathy, biofeedback, and nutritional supplementation, and a rolfer for physical therapy. It's not been a picnic these last few months, but she is improving steadily, going for up to a week completely headache free and she feels stronger than she has in years. We are cautiously hopeful, that the cycle of getting better only to have everything stop working will finally end. Keep looking for what will work for you and remember that eventhough you are a powerful woman, it's OK to stop and let others be the strong one when you're in need.

Anonymous

1/ 3/09 12:47pm

Hi Stacy. I know how you feel with the never ending migraine battle. I've had them for years too. Over the years they only seem to get worse instead of better. I've tried every preventative medication out there & it has not worked. I've been hospitalized twice & given DHE45, Decadron, phenergan & morphine. It would stop them for a while but they always came back. Now I give myself DHE shots at home. They suck & are very painful. I've also had some very bad ER experiences. ER doctors DO NOT think migraines are worth their time. The other day my neurologist gave me a cortisone/marcane shot in the back of my head to try & help stop them but it didn't work. He said I had gotten Occipital Neuralgia from having so many migraines. Who knows what he will try next. My husband does not understand migraines & the pain they cause. He comes home & I'm on the couch in so much pain & he gets frustrated. He thinks I'm just being a wimp & lazy. Its hard on our marriage because I never feel good. I know this will sound mean but I wish he could just have one so he would understand how painful they are. Only people with these horrid things understand what others go through.

I was up this morning early with a bad one & started looking online. Johns Hopkins has a new Headache Center. The website is below. It's worth seeing if your doctor will refer you & maybe they can do something for you. I'm going to talk to my doctor about sending me there. I wish you lots of luck in finding some relief.

Sheree

http://hopkinsneuro.org/headache/index.cfm

Coke head

5/13/09 10:14am

I am 59 years old and have suffered with migraines since I was 12. For years they were severe, but intermittent. I believe I was around 40 when imitrex came along. While it does not always help, I've considered it a lifesaver. I had always hoped that I would "outgrow" migraines after menopause, but I'm afraid they are increasingly worse. I've been going to a neurologist the past several years and am very disappointed in his care. Although it would sound simple to change doctors, insurance doesn't cover many specialists in our area and most of the specialists I could use are in the same office. I have tried many, many treatments including Botox with no relief. While many of my "migraine friends" have been helped by Topamax, it is a very poor drug for me. Not only did I suffer usual side effects but I developed panic attacks that I had never experienced. They went away as soon as I stopped the drug.

I went to the pain clinic at Duke and that was a complete waste of time. My doctor wanted to refer me to the Philadelphia Headache Clinic, but my insuranced denied my request. Not sure where to go now. We all know that our headaches are hell for us, but also are a burden to our families. My husband is very sympathetic, but he never gets headaches so really doesn't understand how I suffer. Believe it or not, I've never been to the emergency room. I wonder about that as I am often too sick to move or get dressed. I just wait it out. A few weeks ago I missed three days of work. I've tried to tell my doctor that my quality of life is poor, but I am also concerned about keeping my job. I have to work, and if it weren't for imitrex, I'd miss a lot more.

Now that imitrex is generic, I don't feel it is as effective. It could be that it just isn't working as well as it used to, but I think the generic isn't as good. I was wondering if anyone else had experienced that. I wish I had some good strategies, but I have little to offer. My ice cold Coke can is my best friend.

This is not the life I signed up for! My husband & children didn't either!

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