Comments on: What is Migraine? (The Life Impact Story)

By: Aurora

Aurora — Wed, 16 Sep 2009 12:11:20 +0000

I am so glad I found this site. I thought I’ve read and exhausted everything about this disease then lo and behold—Cousin Mig! I am still in bed; it is my third day of continuous headache; a bit diffused now, but I still feel like a cripple. I am turning 43 this month and I have had these attacks since I was 25 but didn’t suspect it was migraine. I thought it was just my poor eyesight (left eye is -1 and right eye is +2). After getting the proper eyeglasses, the headaches persisted! Then I blamed the pressure of my bite so I went to the dentist and had my molars fixed. I thought maybe it was my poor eating habit that was causing my nausea and vomitting—hyperacidity, you know. Then I just ran out of targets to blame for my headaches. One of my friends even suggested: “Get a sex life!” Nothing worked. I started not wanting to go to work because I didn’t want to take any more pain relievers that didn’t relieve the pain. My family just said it was just plain laziness or I was just depressed and burned out and needed a vacation. I wasn’t the same anymore. It was like two people; one day there’s this happy-as-a-clam person, then the next next day this intolerably exasperating diva who didn’t want the limelight. I feel like a failure at everything. I didn’t even qualify for that experimental drug test here in Norway because I have more than 15 days of headaches in a month. My GP gave up on me saying I was his worst migraine patient; he’d ran out of medicines to prescribe and passed me on to a neurologist. My worst attack was last year when I was taken to the hospital by an ambulance because I was not coherent and couldn’t answer simple questions like what my name was. My blood pressure dropped to 66/33. It seemed that my system was all screwed up. But I recovered in a couple of days. I am also the type who get the most seldom of side effects from the drugs that were prescribed. I had epileptic-like attacks the first time I used Imigran injection; my face became bloated after one week of taking Indometacid. I urinate a lot and vomit a lot if I take more than 10 mg of triptan a day. So, most days I feel dehydrated and exhausted and we all know that dehydration can trigger a headache. Like Beth, I feel I’ve been robbed of my potential. I have been jobless for almost 5 years now and dependent on social help. I am trying to get out of this vicious cycle of energetic for a couple of days then down for 3 days. I even dread job interviews because they also ask about one’s health and I am always honest about it. So I just gave up trying to be productive. Most of my days are spent in this dark room with only the flickering lights of my aura for company. I am that alien who walks inside the house wearing sunglasses and earplugs. I also suspect that my migraine is coupled by other types of headaches because sometimes I can’t pin-point if it’s a migraine. I have tried physiotheraphy; naprapathy, and acupuncture. I don’t want to take medicine for epileptics, though my doctor hinted at it, but I didn’t react on that. I’ve had enough. So, another round of trial and error— tried taking magnesium supplements; have given up on so many types of food that I am on the verge of becoming a vegetarian. But still, my headaches are averaging more than 18 days a month! The entertainment I got today is Cousin Mig. Thanks for describing him and thanks for starting this community. I have to park my pen—I’ve got a headache!

By: DJ

DJ — Wed, 24 Jun 2009 10:19:23 +0000

Well done. Doctors are still slow to understand the impact on productivity and life quality migraine has. How doctors think we earn a living or keep our jobs if we’re taking excessive sick leave is beyond me, yet asking for treatment is seen akin to asking for an illicit drug even when the the patient is simply seeking control so they can get on with their work, life, family and community obligations.

Personally I have gone for years with little happening with excuses being it’s stress, nothing can be done, you’ve had treatment (only 1 medication out of 100 possiblities) so nothing further can be done and it goes on. Then of course then there’s the but you’ve had them for a very long time (because doctors wouldn’t treat).

The more awareness of migraine and treatment options the better

By: TheDailyHerb

TheDailyHerb — Mon, 25 May 2009 17:43:37 +0000

Wow, powerful article, James. I also feel that you’ve captured the essence of what my life has been like for many years now. I can so totally relate to what Beth is going through as I have been there too. I lived in fear of when the next attack was coming — and for me, they were almost every day (I have so many triggers). I have quite literally lost everything to migraine — career, financial security, friends, family, relationships, small businesses I owned, the list could go on.

Here’s what has helped me. I have looked at my migraines as a blessing in disguise and asked myself, “What are the gifts that migraine has given me?”

1. I have learned to stand up for myself and for what I need.
2. I have learned to self-advocate with medical professionals, helping agencies, and college officials.
3. I have learned that I am in control over my health and can take charge by putting self-care first.
4. I have learned who my REAL friends are.
5. I have discovered how strong I really am.
6. I have learned to be uber resourceful.
7. I have learned to ask for help when I need it. (yes, very humbling)
8. I have truly learned how to balance work and life
9. I have learned to say no and really mean it.
10. I have made wonderful connections with migraineurs like me and draw great comfort and strength from the “migraine community.”

Because the financial impact of migraine was so devasting to me, I went back to college. Not only did it afford me “income” from my student loans, but I got my BA in Psychology, graduating magna cum laude last year (in spite of debilitating migraines).

I want to assure Beth and other migraineurs that if they are disabled my migraine then they can and should apply for social security disability (here in the US). I also heard the rumor that migraine wasn’t a recognized disability. Let me assure you SSI and SSDI is available for those disabled by migraines.

I began receiving SSI benefits last September. You can file a claim at your local social security office (I did this when I was in migraine so they could see how sick I am.) Still, expect to be denied the first time you apply. Then, find an attorney or like I did, I former Social Security employee who now handles disability claims. (Word of mouth is the best way to find someone, but you can look in your local phone book.) It took about 13 months, but my appeal went through and I was granted disability benefits going back to my original filing date.

Now this is a very good reason for taking the time and energy to keep a migraine diary! It documents how disabling your condition is. (I used my migraine diary for a Statistics class project and then used my statistical analysis as part of my disability claim documentation (also got an A+ on my report

Although this money alone cannot pay my all my bills, it helps tremendously as I begin to reclaim my life from migraine and relaunch my coaching practice. The going is slow, but I am making progress every day.

By: James

James — Fri, 10 Apr 2009 19:29:13 +0000

Thanks, Emma. Migraine is such a challenge – but you’re right, we CAN’T let it stop us!

By: Emma

Emma — Tue, 24 Feb 2009 02:19:03 +0000

I have to say that your e-zine has provided me with some great information that I have passed on to the uninformed – so thank you James! I have suffered with this disease from the age of 10. That was the day they thought I had a tumor and scanned the heck out of me! Imagine my family’s reaction when told that I suffer from migraines… So, 22 years later, I still suffer. No pain medicine works for very long – usually about 4 doses, and no preventative treatment keeps preventing them – the longest I have gone without a migraine is two weeks. I suffer from many types of migraine – eye, basilar, and what I call “lightning strikes” when I literally feel like I have been hit with a bolt right through my head. My only identifiable trigger is weather – I can feel the barometer changes and end up with migraines from this – making March and November horrible months for me in the NE US.
I don’t let them stop me… I have a 12 year old son and life doesn’t stop for my migraines, so I try not to stop for them either. If I did, I wouldn’t be able to work, read, ride motorcycles, etc.,. Life is too short and already packed with things I want to do, so I try not to let migraines take charge of my life even if they sometimes interfere. Good luck to everyone out there – I hear there is a new migraine treatment coming out this spring – who knows, maybe this one will do the trick!

By: James

James — Mon, 23 Feb 2009 22:03:56 +0000

Thanks for all your notes! Beth, I don’t think anyone who doesn’t have migraine will ever totally “get it”, but I hope we’ve at least been able to take a step forward.

Andy – good advice!

Sheryl – yes, I suffer from attacks related to barometric pressure. They are a real challenge to treat – they represent some of my worst attacks. Actually, I’m working on some new resources for barometric pressure migraine – stay tuned!

Sue – your comment is very timely, especially considering the most recent issue of HeadWay on sleep apnea. This is a topic we’re going to continue looking at in the weeks ahead – thanks for sharing your experience!

By: Sue

Sue — Sun, 22 Feb 2009 22:16:57 +0000

Thanks so much for the information. I have been a migraine “groupie” for many years. I could run my own pharmacy with drugs that I have taken and currently take. I am happy if I can keep the migraines at bay. I take feverfew and propanolol which helps on a daily basis. I was at my doctors last week and he is frustrated just as much as me, well maybe not as much, but almost. He suggested that I get my oxygen level tested at night. I know that I don’t stop breathing but I was shocked to find out how shallow my breathing is at night. I had over 14 incidents where it dropped dangerously low. I am now on oxygen at night (2 liters) and I haven’t had a migraine in 6 days, which can be record for me. I have gone longer (2 months, but that is rare). Getting use to the nasel cannula has been the most trying, but I am now sleeping through the night and I don’t wake up with a migraine. I just retired from teaching special education for 29 years and I can count on one hand the times I had to stay home due to a headache. I forced myself to deal with it and to keep the drugs handy. But not to wake up with a migraine…wow…I just hope it continues. I am still being tested and evaluated, but at least I have found ONE thing that is working for me. It’s nice to have a resource of “friends” who won’t say, “it’s all in my head”.

By: Sheryl

Sheryl — Sun, 22 Feb 2009 03:32:27 +0000

Hello! This is my first post. James, keep up the research. It means a lot to all of us. My question is this – does anyone out there suffer from barometric pressure migraines? I can always tell when a storm is coming because the pressure drops, and my head begins to POUND! My doctor wanted to put me on Atenolol, but I really don’t want to be on anything synthetic. Any suggestions for a homeopathic remedy to help relieve the pain? I have learned over the years which foods trigger my migraines, and I don’t eat them. I have learned that bright sun , being too hot, anything too loud, or just a strong odor can start up the pain! I started taking CoQ10 about two months ago, and my frequency of headaches has decreased. I had read that people that suffer from migraines have a deficiency of this enzyme. However, nothing seems to stop these barometric pressure migraines! I would like to hear from anyone who suffers from this type of migraine. Thanks so much, Sheryl

By: Andy

Andy — Tue, 10 Feb 2009 17:55:28 +0000

James,

Your article is a biography of all of us, in one way or another. I see myself in much of the article, and in the comments by Beth. You have to, as you said, is be prepared, and develop your own tools to cope with your illness. Each of us needs to fill our toolbox with the things we know help us get over the next migraine and take them one at a time.

By: Beth

Beth — Fri, 06 Feb 2009 23:30:44 +0000

I appreciate everyone’s encouraging words to me. I have to admit, I still cry when I read this article. I have been able to share it with one friend who has a family member who suffers from migraines. And even though I tried to share it with others, I don’t think they “got it”. James, I especially want to thank you! Your articles are so informative to all of us who suffer in silence because people are tired of hearing about our “headaches”. I am going to keep sharing your articles as they are of the upmost value to me and anyone who is or is close to someone controlled by migraines.
And a note to Judy, I lost my insurance years ago. My neurologist helped me get several of my medications for free through the Prescriptions for Patient Assistance. Among others, I take Maxalt and Effexor and am able to get those directly from the manufacturer for free. Good luck to you!!