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Diagnosis of Migraine & Headache Types

What am I missing/doing wrong?

  • By Tamara

    I don’t know where to go now, the migraines are continuing to get worse and worse and nothing is working. I am on Cymbalta and Inderal for preventative, cyclobenzaprine about 5/7 days, doing trigger point injections, prolotherapy on my neck and jaw (pain possibly coming from that), starting botox once I can get the forms signed and undercoverage, craniosacral, massage, acunpuncture and then have abortive meds – imitrex, T3, tramacet I use no more than 1o days combined a month and gravol like candy. I also use ice, hot pack, essential oils almost every day.

    I am SOOOO tired from doing all this and still having the headaches get worse. The general neurologist is useless, only recommendation is to up meds every 2 months and wait. Well I have been in the urgent care/ER 4 times this month and day to day pain is INCREASED. what am I missing?

    I watch my diet (I also have severe food allergies so this is a stressful area), follow a sleep schedule to the tee (having nightmare and cold sweats lately tho), stay hydrated. I cannot exercise at this time because any movement of my head/body seems to trigger pulsating pain and triggers migraine.

    I literally don’t know what else to ask to try … I’m 27 years old and I haven’t been able to work at all this week, I have no disability insurance because I’m a contractor and no significant other in my life. I literally HAVE to work because I have to pay for my meds and bills (no one in my family is in a position to help), but I am in too much pain to work and drive. Any suggestions would be helpful!I have no idea how to survive life with this severe of pain, is lying on the couch watching TV really living? I haven’t even been able to play with my cats this week because of the pain and I had to go into urgent care once, ER once and two extra trigger point injection appts and that was just to keep me from bashing my head against the wall. thanks.

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  • By Nancy Harris Bonk Moderator

    Hi Tamara,

    Thank you for your questions. I am so very sorry to hear you are having such a difficult time. Migraine can be complicated, let me see what I can do for you.

    Congratulations on your efforts in keeping a regular sleep schedule – a very important thing for people with migraine. There are many of us, myself NOT included, who do not have any food triggers at all. Other strong triggers include changes in the barometric pressure, hormonal fluctuations, smoking, alcohol, and many other things. I would encourage you to keep a detailed migraine diary, something most migraine/headache experts suggest, to help identify any patterns, triggers and medications that work or don’t work for our attacks. There are many apps out there that make this easier than ever. We have the Migraine Meter you may be interested in checking out here; https://migraine.com/migraine-meter/.

    Is there any chance you are taking something on a daily, or near daily basis to relieve this pain? One problem many of us run into is called medication overuse headache, or moh. Moh can occur if we take pain relievers, and or migraine medications, whether they are over-the-counter or prescription, more than two to three days a week. If we are in an moh cycle, our attacks will be more difficult to treat and we can end up in a daily cycle of pain that too is hard to break. Let me share this information with you on moh; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    One more thing before I totally overwhelm you, if I may. If you haven’t seen a “true” migraine expert, I would encourage you to do so. These doctors are experts in migraine and headache disorders and are board certified in headache medicine which is different than being certified in neurology. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as stroke, epilepsy, multiple sclerosis, Parkinson’s and others. Here is information on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/
    and https://migraine.com/blog/really-find-headache-specialist/.

    Hope this helps!
    Nancy

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  • By Allyoop

    Hi Tamara, some good advice above. I went to a neurologist for 8 years and had all the testing and many medications. I ended up taking too much and having constant pain. One day I decided to take nothing and “clear out” all the meds I was taking. It was a very miserable two weeks of pain and going crazy. But by doing this (I don’t recommend, unless Doctors supervision) I went to Mayo Clinic to a headache specialist and started from scratch (not testing) but medication. I am taking Petadolex 75mg 2X daily and naratriptan as needed for migraine (was taking Maxalt MLT 10mg, which got rid of my migraines fast, but spent 3 days with hangover effect). It took 3 months of patience (I am not good at taking meds.) to find great relief. My migraines were cut in half and when I had one it was for a shorter duration, not all day, or week. I hope this helps. Everybody is different, finding a good headache specialist is key. I wish I had, had the advice from Nancy Harris long ago, because I spent 11 years figuring it out on my own.

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  • By Tamara

    Thanks for the info, my problem is I’m still waiting to see a headache specialist. Since I’m in Canada they is no way to jump the line and see one privately and the headache clinic is waaaaay behind on the doctor visits. We sent in my paperwork April 2015 when the migraines were already daily (stupid Doctor should have done it in January when I first saw him!) ……. I probably won’t get an appointment until January 2017. I hate doctors

    I have seen the dietician, psychologist and done some self management seminars through the clinic. Psychologist did pick up on me not using my meds and stumbling through days of 8/10 pain because I was staying under the 10 days a month. 14 days in July and 18 days of pain meds in August. Nope treating days above 6/10 did not lower the over all days at all like we hoped. I have a year and half of headache diaries …..

    Since that post I’ve stopped the cymbalta, inderal (not helping), trying vaporic acid and separate meds for depression (that are not working at all ….. Sucks). Done two rounds of Botox, 4 rounds of prolotherapy which should have helped by now and dropped down to part time work. Was hoping more time to rest and do all the other things I need to do would at least bring the pain down a notch. Nope ….. Worse as ever. Money is a huge issue right now and will just keep getting worse which is making it harder and harder to treat the depression and anxiety. Can’t say I hate life anymore because I don’t have a life …. It’s hard.

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  • By DonnaFA Moderator

    Hi, Tamara. I’m sorry to hear that you are having such a difficult time. There are a few options in Canada that may be able to help you financially through this time.

    I’m also sorry to hear that your wait to see the doctor is so far in the future. You may be interested in the articles we have on homeopathic remedies until your visit.

    I hope you soon find some relief. We’ll keep you in our thoughts. Please keep us updated. -All Best, Donna (Migraine.com team)

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  • By Allyoop

    Tamara, I am so sorry you have to wait so long to get seen by a headache specialist. I have lived those days wondering what to do next. At the “end of my rope” so to speak. I was a full-time teacher in elementary school and taught teachers part-time after school. I basically had to quit my job (go on leave) and was bed-ridden for 2 years and the meds were making me crazy, plus 2 children at home that had a hard time understanding why Mom was a mess. I found a person who shared my pain at the time and we got each other thru the difficult times sharing our stories. We both tried different treatments and shared our thoughts, Sharon saved my life. She gave me hope and I gave her hope for a remedy. Finding someone in a similiar situation, the right person will help. I also talked with a Psychologist at Mayo, the best one ever and she suggested Mindfulness Meditation and Biofeedback. The mindfulness meditation is wonderful (I listen to Tara Brach, PhD) it took awhile, but I listened to everyday for two weeks as suggested. Now I listen to and practice mindfulness everyday, it helps with stress, and worry over having a debilitating disease, plus it helps with pain. I hope this helps you in your journey with migraines, which I renamed to brain sh*%. I was hoping to give it a more positive name but not yet. Best Wishes in finding your happy place again!

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  • By Nancy Harris Bonk Moderator

    Hi Allyoop,

    Thank you so much for your encouraging words and sharing what is working for you.

    I’ll keep my fingers crossed for your continued success.

    Nancy

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