What do I do now...

By staci

1 min read

I have shared my story before but now I am at a whole new place with my treatment and experience. A little history I have had migraines for 14 years..maybe a couple a year, take some OC meds and go to bed. Three years ago all that changed.

My migraines took over my life and have been turning my life upside down since. I have had 5 Drs and 15 different meds. Some helped for a short period of time, some didn't help at all and I even took one that made them worse. I saw a specialist at Mayo's clinic last May.. after reviewing my history and documenting all the meds that I have tried, he looked at me and said. I am sorry Staci, there is a small percentage of chronic migraine patients who don't ever get relief. Over the last 3 years while my meds worked sometimes or not at all I would suffer as long as I can and then go to my Dr's office or the local ER.

Well 2 months ago I visited the ER and the Dr basically refused me medication. He called in a pharmacist and wanted me to discuss my drug options going forward. They have officially labeled me. I have been restricted to Noraflex and Toradol.. which doesn't touch it. I would like to say I have never done drugs in my life. Never even smoked a joint as a kid.. but now I am a labeled drug seeker because of a condition that I have that causes me horrific pain with no relief.

So I am at a point now that I have no options. I am currently on day 4 of a migraine that is currently at an 8.. I don't know what to do!

As I was writing this I was hoping I wasn't the only one who has ever been through this but now as I read it, I hope no one else is going through this! It's horrible :(

Staci

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Praying for all of US who deal with this daily.
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I deal with these daily and it seems my only option is surgery. All the way in Tezas but still waiting on insurance and approval 🙁 this has taken over my life and left me in a debilitated state most of the time. Its not just me that suffers my family has for years watching me go through this.
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Geez havign a bad one today I cant even spell the surgery is in Texas not Tezas, lol.
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I actually am dealing with this right now. Feel better soon.
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Staci, I was in a very similar place as you, except that NO pain meds helped me at all. I found out, after all the several top migraine specialists/neurologists, that migraine was a misdiagnosis for me. I actually have compressed nerves. I was misdiagnosed until I became a patient of the Headache Clinic Georgetown University Hospital, in Washington, DC. I am now on the road to recovery! I have been in unending pain since May 26, 2003, but I hope to be much better by summer of this year. Here's a couple of links to get you started. The first one is by my current neurologist, Dr. Maureen Moriarty. <a href='https://www.georgetownuniversityhospital.org/LectureSeries/?lecture=What_causes_migraine' target='_blank' rel='noopener noreferrer ugc'>http://www.georgetownuniversityhospital.org/LectureSeries/?lecture=What_causes_migraine</a> I think you'll find it very informative. You might want to bookmark it for future reference.
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today is the first day in about a week I have had no lingering headache. These things are awful. Has anyone tried botox injections for Chronic migraine preventative? Just curious. Cathy---what type of surgery? It always helps me to know that there are others with these horrible headaches suffering right along w/me. Sometimes it feels as if you are the only one in the world with this debilitating disease....
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The 2nd one is by my Peripheral Nerve Surgeon, Dr. Ivica Ducic. He is the Chief of the Peripheral Nerve Institute and President of the American Society of Peripheral Nerve. he's also a professor at the medical school Georgetown University Hospital. <a href='https://www.georgetownuniversityhospital.org/LectureSeries/?lecture=Surgical_Treatment_Chronic_MigraineHeadaches' target='_blank' rel='noopener noreferrer ugc'>http://www.georgetownuniversityhospital.org/LectureSeries/?lecture=Surgical_Treatment_Chronic_MigraineHeadaches</a>
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I also have chronic migraines..and have been to the ER many times and a few occasions they made me feel like I was a drug addict...I also get twitches all over my face..shoulders and arms that I cannot control..they actually hurt but I have hard time explaining this to doctor in the ER , they looked at me like ok she is having withdrawls..hate going to the ER but sometimes when meds do not work at home I have no choice. I pray that one day doctors will really understand the pain of migraines..its not joke!
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If anyone reading this has any questions, please feel free to contact me via Facebook and also join us over at one of our FB support groups. <a href='https://www.facebook.com/groups/44913483837/' target='_blank' rel='noopener noreferrer ugc'>http://www.facebook.com/groups/44913483837/</a>
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<a href='https://www.facebook.com/groups/165457894202/' target='_blank' rel='noopener noreferrer ugc'>http://www.facebook.com/groups/165457894202/</a>
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<a href='https://www.facebook.com/groups/174215379290936/' target='_blank' rel='noopener noreferrer ugc'>http://www.facebook.com/groups/174215379290936/</a>
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Our groups are called Occipital Neuralgia. Different people have started different ones, but our goal is the same - to help folks.
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Staci, I have basically experienced your life with the gradual progression. My migraines started at 8. My daughter, 9, started a couple years ago and I worry about her a lot. I, however, have an excellent doctor and have not been labelled a drug seeker. I've always feared that, but it never happebed thankfully. Since last June I have had a migraine every single day and they have progressed in severity of symptoms as well. My doctor mentioned Botox. It was approved about 1 1/2 years ago to treat migraines with as a last resort. It osn't supposed to rid you of thr migraines, but reduce occurrence and severity by half. Any sufferer knows that is significant. However, it takes your doctor sending in the proper documentation to your insirance company of how many years you have suffered, how bad they get, and that you currently suffer at least 12 days a month; not to mention all other meds are no longer helping. I have not reached my second treatment yet, but I already notice some relief. I don't wake up in the middle of the night from a migraine like before. It's worth a shot. I know what it's like to be told you may have to live in misery and never enjoy your children or husband and family again. Hope this helps.
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Sorry to hear about your ER incident Staci, Unfortunately, a lot of us get labeled by ER Docs. I also have the chronic daily migraine which none of the numerous doctors I have been to can seem to find the right combination of medication yet. I am back on Topamax for round 2 to try again and see if it will work. Good luck to all of us that suffer....Jan.
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If you find the answer... pls let me know. My heart breaks for you as I know how you feel. I had a neurologist say that I suffered from somatization and a judge call me a drug seeker. Ive suffered from headaches for years and seen countless doctors only to be called a liar. I have no answers myself. sometimes I wish I had a disease that people could see. =(
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Staci I have been there too. I started having migraines at the age of 12 and have had them for the last 30 years. I have been lucky in regards to doctors being willing to try new things but allowing me to have relief with narcotic injections when needed. My local ER has many compassionate doctors that I have gotten to know who trust me and understand my disorder and treatment but there are a handful that have labeled me a drug seeker and have refused t treat me. It is an awful feeling to be in pain and have people think you are just out to get high. I wish you luck in your search for the right treatment.
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I feel sorry for you. I don't know what to suggest. Could you just go back to them and suggest options? I'm currently on oxygen. I'm being delivered bottles at home. It doesn't help all migraines, but has relieved a couple when taken on time. Or can't you go to other doctors. I know what you are going through. I have pains all the time and if I were to be taken away my medications I don't know what I would do.
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Hello Staci! Life begins when pain ends....It takes only one second to stop a migraine headache and 15 seconds to put you in remission for 2 to 10 years. Look me up at Mancao Myotherapy or Dr. Christian Emmanuel V. Mancao or a similar topic in Immediate Relief of Chronic Pain. my e mail is cevmancao@yahoo.com. Migraine has been so simple for us to treat for the past 20 years... I just wonder why the rest of the medical community has still very little to offer despite the advances in what is generally called as "modern medicine" God BLess! Chris
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I am sorry Staci I know exactly how you feel also, I have had bad migraines that cause Caesars since after I had my daughter 9 years ago. I have seen over 5 specialists and 5 doctors 3 neurologists.. They have found out that I also have a bad sleep apnea which causes strokes & heart attacks if a CPAP is not used. Started using the CPAP it kind of made my headaches better for awhile but sometimes the pressure feels like I am suffocating so I would take my mask off. I have used a CPAP almost two years and it no longer helps with my migraines. They have tried also many different medications for me. Even cervical injections in my neck which kind of helped but once they stopped giving me the shots, I felt devastated they asked my insurance provider if they would approve me for Botox because I have been on everything and also because the cervical shots only work for a certain time period that later in life can mess up your vertebra's. The insurance company has now sent me a letter saying that I have not tried enough preventive medications for my headaches and they will not approve me for Botox. Also, I cannot take a lot of medications for migraines because I am so allergic to caffeine, codeine, sulfur, topical iodine, and contrast dyes. Which I have found out many medicines for migraines have these ingredients. So you know I felt really angry told my regular family doctor and she said someday the people are going to get so fed up with the insurance company's the people are going to start going after the insurance company. I am still on my journey to find a cure for my migraines. Good luck to you. I have also heard that chiropractic can help but insurance will not cover that and it runs $200 a visit. If I find anything I will let you know.
cal7912 Member
I had migraines for almost twenty years but have spent the last three weeks migraine-free. The headaches were accompanied by still neck, shoulder and upper back pain. On occasion, the combination would be debilitating and several times I thought I might be having a stroke. I attributed it to many causes, as I am active and work at a desk: Golf, weight-lifting, running, computer desk strain, fibromyalgia, too-hard mattress, too-soft mattress, poor sleep posture, poor sitting posture, food allergies, alcohol, though I did it only occasionally, arthritis, and nearly about everything else I could think of. I went out with a friend to dinner a few weeks ago and my head was throbbing. I told her how I felt and that I couldn't take it any more (although I had never seen a doctor about it because I suspected they would not have an answer and did not want drugs). I came home, went to bed with the same throbbing and awakened the next morning. Had an insight and I don't know why, but I thought, maybe it was from walking barefoot on my hardwood floor. Put on my sneakers and felt almost immediate relief. Kept my sneakers on for the next few days and the headaches disappeared - completely. I have not walked barefoot since and have not had a headache since. All of the pain and stress around my head, neck and shoulders has completely disappeared. I feel as if I have dropped twenty years from my body. Not only did I walk around the apartment barefoot all the time, but I also did things such as shadow-box to get my breathing up. I would dance around shadow-boxing or simply run in place. Never connected any of it with headaches. Now I never walk barefoot and have not had a headache since. I am astounded to having lived with those headaches for almost two decades when the cause and cure was so simple. This might not be the case for most with migraines, but mine are gone, gone, gone, gone.