My Life With Migraine

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My Life With Migraine

Post by Nikirae14 on Tue Jun 12, 2012 10:01 am

Hi, I just stumbled on to this site. I have struggled with chronic migraine for 18 years, ever since the birth of my oldest son. I am fortunate that the triptan class of medication is usually effective in knocking my migraines back, but I HATE taking so much medication all the time. My first marriage was in large part a victim of my migraines, once I was no fun - always having migraines, never having energy, etc.

It was even harder to be a single mom of two small boys. They learned very quickly to be quiet when mom has a migraine. My oldest son got his first migraine when he was three. Fortunately, he had a mom who know about migraines. He would run a fever, throw up, and be completely lethargic. Once he got to puberty though, the migraines stopped. The result though, is that I have kids who completely understand that a migraine is not just "a headache."

I have managed to keep a job through the years, so that is lucky, I guess. For the last 7 years I have worked for a really good employer, and am able to take off when I need to - which is usually when my migraine medications don't work. If I have to take anything for nausea, I am knocked out for a whole day, but sometimes that seems like the best option when the Sumatriptan hasn't done anything.

There are a few things that are known triggers that I avoid whenever possible - codeine and shrimp are easy, but aerosols, cigarette smoke, flickering lights, people doused in cologne/perfume, etc are not as controllable. And there are many migraines that I can't connect to a specific trigger.

Currently I get about 4-5 migraines a week. As a result, I am always either getting a migraine, have a migraine, or recovering from a migraine. As I imagine all of you know, that gets exhausting. I have been on a number of preventatives, but even the ones that seem to work for a while never last more than a month or so - it's as if my body gets accustomed to them and that's that.

I have remarried, and my husband is very understanding/supportive of me. He always wants to figure out WHY I got the migraine, which sometimes makes me want to yell "Sometimes I just get a migraine!" After all, I have been living with them twice as long as he has Smile

Anyway, that's me in a nutshell. I think it will be nice to have a place/community of people who understand.


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Re: My Life With Migraine

Post by Tee on Wed Jun 13, 2012 6:48 am

Hello there and welcome - but sorry to read your having so many migraines.. do you know which type you have?

Since you are now at the chronic stage (15+ per month) are you taking any preventatives?

As to your husbands questions - its one we have all been asking for many years - but a lot of research has taken place in the last couple of years and it looks like it a genetic problem - so you will have been born with it as the rest of us........... as to want we do about it - that is another question

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Re: My Life With Migraine

Post by Laura on Thu Jun 14, 2012 4:31 am

Nikirae14 - 18 years! You must be exhausted. I've had people ask me if my migraines are because of the way I handle stress, or because of psychological problems, or allergies, or the food I eat. I say the answer is yes and no. These things may trigger a migraine but they are not the cause. Why do I get a migraine because I smell cologne or am working against a deadline and the next person does not? The cologne or stress may trigger the migraine, but there is something different/wrong with the way my body responds to stimuli that results in a migraine. And the doctors and scientists have not exactly figured out what's wrong from what I've read. The research shows it to be genetic and hereditary and likely neurological in origin - but the details are not all worked out. Therefore the management of the disorder is still hit and miss / trial and error. And quite frankly - that sucks. But with forums like this, at least we can share info and support one another and not feel so alone (thank you Tee)
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Re: My Life With Migraine

Post by lissah on Thu Jul 26, 2012 4:39 am

Hi Nikirae14,
I just joined the site today and your story I could relate to hands down. I have been a migraine suffer since my early 20s but nothing I couldn't handle and usually only lasted the one day then I would go months without. No more, I am averaging, that is if I can get rid of the migraine period, 3-4 migraines a week. I continue to work, and do my best to act like nothing is wrong. I have fought through many health issues over the past 11 years so giving up or giving in to my migraines is not a current option I am ready to accept.

Finding an employer that is understanding and some what supportive, my hats off to you and your employer. I commute a total of 3 hours a day to work. My boss doesn't accept my migraines as a reason to miss or be late, or even leave early. So I here I am, sitting at day 7 of one migraine suffering and knowing I still have 1.5 hours to drive once my work day is over. My migraines make me very tired and extremely frustrated.

I have no known triggers that we have been able to identify, I have no warning signs that it is coming other than that first severe sharp pain on the right side of my skull. Then it becomes game on. I have tried nay different preventative meds and migraine meds. They either don't work, speed my heart rate up sky high, or they don't work for very long.

I totally sympathize with you and know exactly where you are coming from.
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Re: My Life With Migraine

Post by Laura on Thu Jul 26, 2012 5:00 am

Lissah -
I have read that Migraine qualifies under ADA. It is my understanding that You can request reasonable accommodations such as dim lighting or non fluorescent lighting or a fragrance free workplace. I think you can even request a variable work schedule where you work varying hours each day as long as you get in the required number of hours for the week. For example you can go home early on a Tuesday and make the time up on Friday. Of course this only works with certain types of jobs. For instance, it may work if you are a bookkeeper or other office worker but not for bus drivers and or other shift workers. If you wanted to apply, I am sure you would need a doctor to verify your illness. You may just consider asking a doctor to write a letter to your employer explaining your illness. That way he or she would understand better and be more likely to believe you.
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Re: My Life With Migraine

Post by Tee on Thu Jul 26, 2012 8:32 am

Hello Lissah and welcome- I am sorry to read you are suffering - hats off to you for continuing to work .

Have a read through this http://migrainetalk.forumotion.co.uk/t330-types-of-triggers?highlight=triggers

Migraine is triggered that is the one fact that fits us all - it might not be one but a build up of many and it can take days to kick in in some cases......... keeping a diary will help identify them and it can take a while...

Do you practice any relaxation techniques? Like Beukyo breathing, meditations, massage ?

x



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Re: My Life With Migraine

Post by lissah on Sat Jul 28, 2012 6:12 am

Hello again Tee. No I have never tried any relaxation techniques. I do like your suggestion of a diary. Of all the years that I have been suffering from these migraines they have not been able to pinpoint a trigger.

But to be quite honest with you doctors in TN seem to be unconcerned and even uncaring about migraines. Where I live in West Tennessee doctors don't seem to have strong knowledge of migraines. I have a condition called pelvic floor disorder. About 11.5 years ago I was finally approved for and received a neuro-interstim implant to control the muscle spasms in my pelvic floor on the right side. To this day if a doctor takes an xray they see that and first thing out their mouth is what is it? then the ask what is it for? then I get this blank look of, HUH?
So to be honest I do not think that there are any doctors in my area that even see migraines as a problem. At the ER they usually treat me as though I am just there for a "drug fix" like I am a drug addict or something. If doctors don't have an answer, don't understand, have no empathy, then they look down their noses at you and pretty much call you a faker. This is what I have dealt with since 2005 when my migraines escalated to the first long-term migraine (6 weeks it took for it to finally go away).
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Re: My Life With Migraine

Post by Laura on Sat Jul 28, 2012 8:10 am

Oh - you answered my question about your other condition here.

I know you are in a difficult position with insurance, but maybe at some point you could go see someone on this list. These doctors have extra training in headache medicine. There are a few in TN.

http://www.migraineresearchfoundation.org/pdf/Final%20Diplomate%20List.pdf
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Re: My Life With Migraine

Post by lissah on Sun Jul 29, 2012 5:01 am

Thank you Laura. I have already found that link and have the doctor information written down for the one closest to me. I will have to check into how or if this would interfere with my current pain management program. Thank you again for all the helpful information. I have made some decisions over the last week that I think will help in reducing my migraines, I hope. The support here has been amazingly helpful.
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Re: My Life With Migraine

Post by Tee on Mon Sep 03, 2012 7:25 am

I am sorry to read that the doctors do not take this seriously enough - I am hoping that now they have found a genetic link (for some forms) that those who do not understand will start to take this a bit more serious xx

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Re: My Life With Migraine

Post by lissah on Tue Sep 04, 2012 3:39 am

After that last bad migraine my husband and I felt it best that I resign my position so far from home. So since neither of us is working right now, work is hard to find even with an associates degree, bachelor's degree, and almost done with my master's degree.
If you don't have money or health insurance no one wants to help you figure anything out about your medical condition. It is pretty much like you are insignificant because you are not privileged with a lot of money and insurance.
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Re: My Life With Migraine

Post by Laura on Tue Sep 04, 2012 10:57 am

It really is awful how difficult medical treatment is without insurance through an employer. Have you looked into Medicaid and disability before? Now that you are both unemployed would it be any easier to qualify? I don't know the ins and outs of those programs.
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Re: My Life With Migraine

Post by lissah on Tue Sep 04, 2012 11:17 pm

I have not checked into disability but years ago a doctor did suggest it because of some other health issues I have coupled with the migraines. It is hard for me to think about going on disability. I am not a very good stay at home kind of person. I have been in school since 2005 and next summer I will be graduating with my Master's Degree. I hate to see all those years of studying, dedication, and hard work go to waste because my body seems to be argumentative.
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Re: My Life With Migraine

Post by kriskin on Wed Sep 25, 2013 10:39 am

Nikirae14 wrote:Hi, I just stumbled on to this site. I have struggled with chronic migraine for 18 years, ever since the birth of my oldest son. I am fortunate that the triptan class of medication is usually effective in knocking my migraines back, but I HATE taking so much medication all the time. My first marriage was in large part a victim of my migraines, once I was no fun - always having migraines, never having energy, etc.

It was even harder to be a single mom of two small boys. They learned very quickly to be quiet when mom has a migraine. My oldest son got his first migraine when he was three. Fortunately, he had a mom who know about migraines. He would run a fever, throw up, and be completely lethargic. Once he got to puberty though, the migraines stopped. The result though, is that I have kids who completely understand that a migraine is not just "a headache."

I have managed to keep a job through the years, so that is lucky, I guess. For the last 7 years I have worked for a really good employer, and am able to take off when I need to - which is usually when my migraine medications don't work. If I have to take anything for nausea, I am knocked out for a whole day, but sometimes that seems like the best option when the Sumatriptan hasn't done anything.

There are a few things that are known triggers that I avoid whenever possible - codeine and shrimp are easy, but aerosols, cigarette smoke, flickering lights, people doused in cologne/perfume, etc are not as controllable. And there are many migraines that I can't connect to a specific trigger.

Currently I get about 4-5 migraines a week. As a result, I am always either getting a migraine, have a migraine, or recovering from a migraine. As I imagine all of you know, that gets exhausting. I have been on a number of preventatives, but even the ones that seem to work for a while never last more than a month or so - it's as if my body gets accustomed to them and that's that.

I have remarried, and my husband is very understanding/supportive of me. He always wants to figure out WHY I got the migraine, which sometimes makes me want to yell "Sometimes I just get a migraine!" After all, I have been living with them twice as long as he has  Smile

Anyway, that's me in a nutshell. I think it will be nice to have a place/community of people who understand.

hi i usehd to have bad headaches daily to one day i though i had a stroke was given imigran50 i also take amitrptyline 10 mg works a treat take one at night no more headaches

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Re: My Life With Migraine

Post by pīwakawaka on Fri Sep 27, 2013 9:38 am

Unfortunately neither Imigran nor tripylines work for everyone. Neither were effective in my case.

Wouldn't it be nice if a magic bullet was found that worked for everyone all the time.....

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