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Quality of Life with Chronic Daily Migraines

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Posted 8/13/2005 4:35 AM (GMT 0)

Thank You all...

I am making a serious effort to devote more time to the things I love...not the things I have to do...so here I am. I hope to see you all more often and get a chance to be with you all more.

Sometimes I too get down and don't have the right words...but I want you all to know how happy I am that you are here and how much I appreciate you all being here and supporting me and each other. This place is my support system as far as my health is concerned...no one in my family has migraines, so my understanding-from experience-comes from you, and I thank you for that.

Please know that if you ever have anything confidential that you would prefer not to post to the public you can click on the little icon and email me privately anytime.

I hope to be here more often and if there is anything at all I can do...I want to do it!

Feel free to post often, ask questions and participate like you are doing now.

I am going to be doing a few new things...some informational posts on:

***Migraine and Headache Basics

***Types of Headaches (Migraine, Cluster, Tension, Hemiplegic, Basilar Artery Migraine, Organic Headache, Rebound Headaches, Chronic Daily Headache, Intractable Headache, Status Migrainous and more)

***Headache Resources

***Recommended Books and Products (personally reviewed)

***Conditions that  can Coincide with Migraines

***Women and Migraines (Hormones, Pregnancy, Birth Control Pills Etc)

***Medications (Over the Counter, Abortives, Preventatives, Alternative Treatments)

 

If there is anything specific you would like information on, or if there's a topic I mentioned that you would like me to start with...let me know!

Sara

Posted 9/25/2008 12:10 AM (GMT 0)
hi I suffer from chronic migraines all the time - their is not a time that I don't have a headache they range from a 5-10 in matter of seconds on the pain management scale - I have seen several neurologist and jus tthe other day a neurologist that I saw stated to Me "why are you here" I cannot do nothing for you" You have been on all the medications that are out their. And I can't help you. I just wanted to cry" My neurologist is leaving the practice for another position - I just started going to Bio-feed. Has anyone had any luck with this treatment??? I also have done in the past chiropractor, accupuncture - Bad made my headaches worse- My headaches get soo bad that my left side goes numb and tingly, cannot open my eyes hardley. Dont like sound or light. I am supposed to see a Pain Management doctor in Nov . Has anyone had any luck with this treatment - I have been on Disability for a few months - but out of work for a year - Not taking any Pain Medications - i constantly go to the Er or WALK IN CENTERS - THE OTHER DAY THE DOCTOR ONLY GAVE ME FENERGEN - WOULD NOT PRESCRIBE ANYTHING ELSE - DIDN'T WANT TO STEP OVER THE NEUROLOGIST TOES. I have children and husband it is really hurting my relationship with my husband & chi8ldren i am miserable alot of the time and just want to cry... Please help
Posted 9/25/2008 5:12 AM (GMT 0)
Hey everyone,

It is such a relief to read this forum.  I find that I get the most help sympathizing with other people.  Like most of you said, your friends and family try to understand, but they don't really.  I have been really fortunate that I have some great friends that are always looking out for me and ready to take me to the er on a moments notice.  But in the end, I am so tired of this.  It's been two years now with the constant pain, the depression, the doctor visits, hopsitializations, the er visits and the pills.  My life has completly changed.  I have been on more medications that I can count.  I believe I've tried over 30 different types and they all wear off sooner than later.  Actually, I am currently on the EMSAM (MAOI) patch (one of my many drugs) and it is the first thing (minus narcotics) that has actually helped.  However, just like everything else it is losing its effectiness. 

I'm just so tired of everything.  I'm tried of being sick, people looking at me differently, possibly not getting a promotion at work because of it.  I'm tired of going to doctors offices and feeling down most of the time.  I'm tired of my lack of energy and bailing out on plans.  I'm tried of being seen as a drug addict when I do everything in my power not to be. I'm tried of side effects and the pharmasit knowing my name (though in reality it is a good thing).  I'm tired of feeling guilty, ashamed, blue, down and many more adjectives. I'm tried of being a 25 year old in a 65 year olds body. 

I must thank you all for sharing (and putting up with my terrible spelling).  Reading all of your stories is a great help, so thank you.  And thank you for reading my whining.  I really needed to vent a little.  My head just hurts so bad...I just hope I can sleep tonight.

I wish everyone the best.  Again thank you.

Peace.

Michelle

Posted 6/8/2010 2:56 PM (GMT 0)
Hi I am new to this site but I too suffer from chronic migraines, chronic severe migraines, chronic pain syndrome (from the migraines). I can not take Imitrex , Prednisone or Topomax. I have found relpax to work pretty good but I am on state insurance since lossing my private insurance and being considered un-insurable so can only get 6 a month (like how do you decide which day you want relief) that is a mote point since the state of Illinois has decided that now that I am on disability for them I need to do a spend down on their insurance. It is over twice what i make on SSA disability. now I must pay over $2,200.00 a month before the state will help out so I will not be getting any of the meds I now receive or seeing any doctors since we can not afford to pay out what will amount to 2/3 our income a month on doctors for me.
My question is does anyone know of any inexpensive prescription drugs or over the counter ones I can now try.
these migraines cause stroke like symptoms every day chest pain and pain or numbness in right side of face and arm, and such severe light sensitivity that i must wear a patch over the eye for part or all day. so if anyone can help with suggestions for alternative drugs to Relpax and Maxalt please let me know. I can't live on pain killers all my life
Posted 6/8/2010 3:11 PM (GMT 0)
I think the hardest part of the chronic pain and stroke like symptoms is that everyone around you family included don't have a clue to what is going on. My wife has taken over 15 years to even understand enough to quite saying O it's another headache. when I started getting white outs passing out in mid step and having doctors thinking I was having a stroke or heart attack my family finally realized these were not just headaches. I find I can tell other suffers by looking at their faces and they me. It is nice to know people out there who understand what I am going through and how depressing it is to have medical professionals say there is nothing they can do for you. All you can do is go on every day and not give up I have been told I have a good chance that one of these times I will have a real stroke from this or I could go blind still I laugh and go on. And to those who can't understand how I can even stand to live with it I say "I thank God He gave me a good sense of humor and made me very shallow or else they would be really bad " and I go on. I have went from working hard all my life to just surviving each day but out of it I have developed a better understanding of my strengths and more pity for others who suffer in this world
Posted 8/24/2011 10:36 PM (GMT 0)
Not sure if anyone is still on here? But, im 17 and I've just been diagnosed with daily chronic migraines. I've passed out i think four times now because of them. They are so painful!! Teachers wouldn't believe me and think i was always faking saying i couldn't have a headache everyday and it couldn't be THAT painful! im just glad i have finally found people that understand me. Im on Topamax but im get the tingling feeling in hands as a side affect. Im also on amitriptyline.
Posted 11/26/2011 10:29 PM (GMT 0)
I'm 28 and just diagnosed in the past 3 months with chronic migraines. It seems the treatments for preventatives take FOREVER to work...or to not work...and the suffering continues. I'm on imitrex pills and just started topamax. I am on celexa and had about 2 weeks of relief, but the migraines came back.

I'm so sad from all of this, my husband and i have a 2 year old and I feel like I can't even enjoy her. I just had my first er visit last night from a migraine that lasted 5 days and didnt respond to any of my drugs. I am holding on to the topamax, hoping it will kick in soon.



much love to all of my fellow sufferers.
Cari
Posted 12/12/2011 3:54 AM (GMT 0)
Ha, that's kinda funny. Quality of life, I feel I egt bout 40 percent quality.
It affects my body spirit mentality relationships job everything.
I contemplated suicide at one time when they were nonstop.
Luckily I made it out. I manage em to having only bout 2 a month lately.
I manage my life around my headaches
Posted 12/12/2011 4:36 AM (GMT 0)

Nerak said...
Its hard, very hard. And even those closest to us really don't "understand" how we feel. I hope you have a good support system. Even with one its still tough. I guess over the years I've just learned to deal with my daily headaches better. I just made a decision that I couldn't sleep my like away. I take my meds everyday and try not to feel guilty about taking so much medication- its what gets me through the day. I'm also lucky that I have a supportive job. I think forums like this also help- to know that there are other sufferers out there just like you. I think a lot of us also suffer from depression and/or anxiety. Hopefully your Celexa will help with that. I'm more prone to anxiety and I take Lexapro for it- its very, very similar to Celexa. Just hang in there- try to do things that make you happy- try not to be too hard on yourself. Hopefully things will get easier for you soon. Good luck.

Nobody knows what migraines feel like. My fam gets mad when I don't make it to fam event.
I have panic attacks, especially when feel claustrophobic. Some depression.
Posted 5/18/2012 5:03 AM (GMT 0)
Its sad to see so many people suffer and lose control of their lives.Let me share my story.I am a 22 yrs old male,resident of India.One afternoon i started having a mild headache.I paid no heed to it thinking it would go away on its own,to my surprise it persisted for the whole week.Its intensity kept on increasing to a point that felt nausea and extreme light sensitivity.Then two weeks.everyday had the same headache, would generally come in the afternoon and persist whole day.I surfed like crazy and visited atleast a hundred websites.Then started off with my doctor visits,result-painkillers and endless diagnostic tests.darn!i lost total control of life,everyday headaches,popping pills(which did little good and probably much more harm).From vitamin deficiency, diabetes,chronic stress,c.t scans,uric acid,glaucoma,retina detachment(since i also started seeing black floaters) and finally"CHRONIC MIGRAINES" for which the drugs hardly work and had no cure.My career went for a toss,my social life was pathetic(since i always wanted to stay alone because of the chronic pain),my life changed and for the worse.
This went on for many months,i decided to again change my doctor to get a second opinion.He found my TMJ to be a little tender.I had no idea what tmj was.So as usual googled a new medical term-TMJ. TMJ is a joint near our ears and tmj disorder is when it gets inflamed.But a key symptom was MISSING-JAW PAIN.But whatsoever i started doing some tmj exercises i found over the net and improved my posture.To my SURPRISE it did bring me some amount of relief.I continued the exercises for weeks,yes it did subside my headaches,but did not cure them.I had found a new HOPE,since i could somehow manage without painkillers now.And it proved one more thing-i was MISDIAGNOSED.

Then finally after a few weeks,my headaches again started to erupt.I finally gave up hope.Started to take painkillers to somehow just live another day.Then one evening i was finding ways to manage chronic migraines(since i had accepted my fate), I came across a statement which brought a "MIRACLE" to my life-"CHRONIC HEADACHE IS SOMETIMES DUE TO NECK",but i had no neck pain,not even stiffness.What ever be the case i thought to myself,no harm in trying.started doing neck stretches,shoulder stretches and trapezius stretches.And i found the "CURE"!!!I had daily headaches due to neck tension and the pain was being referred to my head.I WAS RELIEVED OF MY AGONY.GOD HAD ANSWERED MY PRAYERS.

I now completely understand what it means to live with chronic pain.We have so many forums where people talk about their chronic headaches,but have hardly seen anyone come up with a bright hope and share their success in battling this deadly hazard called "headaches".PLEASE DONT LOSE HOPE AND GIVE IN TO IT.HOPEFULLY AND WITH GOD'S GRACE YOU TOO WILL BE CURED OR ATLEAST BE ABLE TO LIVE A "NORMAL" LIFE.PEACE AND BLESS YOU ALL.

:-)
Posted 2/3/2013 8:45 PM (GMT 0)
Have you tried an oligoantigenic diet? It is a diet that excludes common allergens (Milk, Egg, Wheat, Tomato, Beef, Corn, Soy). Research on chronic migraines in children shows that 93% of patients can stop their frquent severe migraines on such a diet (see first reference). There is growing evidence that migraines are an allergic disease.

I used to suffer from chronic migraines for years only to finally learn that they were caused by allergies! I now eat lots of rice, vegetables, and fish and have almost no migraines. It may or may not work for you, but it couldn't hurt to try. I hope you feel better.

Best,
Steven

References:

Egger, J., et al. "Is migraine food allergy?: a double-blind controlled trial of oligoantigenic diet treatment." The Lancet (1983): 865-869.

Mansfield, Lyndon E., et al. "Food allergy and adult migraine: double-blind and mediator confirmation of an allergic etiology." Annals of allergy (1985): 126.

Monro, Jean, Claudio Carini, and Jonathan Brostoff. "Migraine is a food-allergic disease." The Lancet (1984): 719-721.
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