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Living in Darkness

I have suffered with migraines since giving birth to my daughter in 1988. Over the years, I have received treatment from numerous doctors. Preventative medication has helped over the years to lessen the amount of migraines. In 2006 my migraines worsened again and I was referred to the Chief Neurosurgeon at Bingham and Women’s hospital in Boston, MA. He identified I had Chiari Malformation and preformed a brain decompression surgery. This with another type of preventative medicine helped manage the number of intense migraines so l could continue to live a somewhat normal life.

In June of 2013, the number and intensity of my migraines increased, I was in constant pain every day, being unable to concentrate, work and get out of bed. I tried everything to break the migraine but everything I tried was unsuccessful. I contacted my Primary Doctor who started me on new medication and referred me to a new Neurologist and a Pain Clinic. In July, 2013 a week after trying two new medications, I started stuttering and haven’t stopped stuttering since. I had never stuttered before in my life. Now it is difficult to get my words out and get out of my mouth what my mind is thinking.

I have Migraines more days than not now. I live with constant pressure in my head and a dull throbbing pain above my right eye. The smallest thing makes my migraines go from a pain level of 6/7 to 10. Due to this, I try and avoid all the triggers that make my migraine worse. Avoiding being around anyone wearing perfume or strong smells, wearing sunglasses wherever I go and staying in the darkness of my room most of the time with ice packs on my head. Why? Because, this is the only relief I can get.

I have worked since I was 15 and had a very successful career until last year when it feels like my life was taken over due to being in pain. This is not the life I want or would wish on anyone.

Finding the cause and way to treat Migraines seems to be a guessing game for doctors and we are ginny pigs. I have tried everything, recently Botox that wasn’t successful. After a while the doctors don’t want to give you anything for the pain because they don’t want you to become addicted and cause rebound headaches. The doctors now are now just trying to help me cope with being in constant pain. I was recently told to just take Advil and approved for medical marijuana. Although Advil is eating my stomach away, I was told that it is better than taking something that can be addictive. Out of desperation for pain relief I was willing to go against everything I believed and taught my children and try medical marijuana. Although it does seem to relieve some of the pressure in my head, it is all trial and error. Medical marijuana is not covered by insurance and not monitored by a doctor so your left to figure it out on your own, what to take and how much. And although this does provide me with some relief, I only use it as a last resort to avoid going to the ER. For something that effects so many, why is there not more research and treatment with results? I have stopped getting my hopes up that a new treatment will work because the let down is unbearable. Now I can only pray that someday I will stop living in darkness and enjoy the sunshine once again.

Thank you for letting me share my story and for providing a place for all those that suffer with this disease the knowledge that we are not suffering alone.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Anne
    5 years ago

    I am SO sorry – that sounds unbearable. Advil does nothing for my migraines. I’m surprised the doctors haven’t put you on Relpax or Zomig or one of the many medicines specifically for migraine pain. These are not addictive and specifically help relieve the symptoms of migraine. I wouldn’t be able to make it if I could only use Advil.

  • Nanci333 author
    5 years ago

    Thank you Anne, Advil doesn’t really do anything, Sadly enough I think now I take it because it is the pain medication I have that doesn’t cause rebound migraines that are worse or terrible side effects. Trying medications has left me with extreme side effects such as memory loss and Speach difficulties. The only thing that really helps is ice packs and darkness. I have tried Zomig but I do not believe I have tried Relpax and will define toy look it to it. Over the years I have tried just about everything. Thank you for your suggestions and advice. Truly appreciated.

  • margaret
    5 years ago

    Hi Nanci, I’m so sorry to hear what you have been through in trying to get treatment. I understand your frustration and living with chronic pain is absolutely horrible. I go from story to story trying to tell others of my own success story. I have suffered with chronic migraines for years before receiving this treatment and I am almost completely migraine free. All I can share with you is my own experience and if you like here is an article on others who have had the same experience. I truly wish you all the best and hope that you will find your cure soon! http://www.chatelaine.com/health/wellness/migraine-therapy/

  • Nanci333 author
    5 years ago

    Thank you Margaret. Where did you go for this treatment? Is this a treatment I can receive locally? Is there a specific name for the type of treatment I should ask for? Is this different than regular acupuncture?
    A few months ago I was referred to a migraine clinic in Boston. The specialist there wanted me to have a few more tests before she decided on treatment. One was another MRI and the other was a neuro psych test. I had the MRI which showed nothing new but can’t get my insurance to approve the neurological psych test. Haven’t heard anything since. It’s a waiting game and unless your all over he doctors they forget about you. I have just been waiting until my appointment next week to complain and see where to go from here. I know I should have called and complained earlier, just get so caught up in trying to manage my daily pain. It often feels like no one seems to care that I’m in this much pain every day. I just want to find someone who understands what I am going through and will help me. I am willing to try anything to get my life back. Any advice is appreciated. Thank you.

  • Katie M. Golden moderator
    5 years ago

    Nanci333,
    My heart goes out to you. Your Migraines are really severe and it must be disappointing with every failed experiment. I, too, am contemplating medical marijuana and glad to hear that it gives you some relief.

    I would encourage you to look into an in-patient treatment facility. There are 4 in the US that offer treatments you couldn’t get with a neurologist. Here is a list of the 4 centers.
    http://www.headaches.org/education/Tools_for_Sufferers/Inpatient_Headache_Units

    I personally have gone to the Jefferson Headache Clinic in Philadelphia. I have had 2 hospitalizations that have helped me tremendously. You can read about my experience here: http://migraine.com/blog/headache-camp/

    Of course, it may not help. Everyone reacts differently. But you definitely need to be in the hands of a specialist. Let me know if you have any questions.
    -Katie

  • Nanci333 author
    5 years ago

    Thank you for sharing your story and the information. I will definitely look into it but after having so much difficulty with the insurance company approving medication and a recommended neuro psych eval, I can only imagine the difficulty in getting this approved. Sometimes it seems to be a full time job just dealing with the doctors and insurance companies. They don’t make it easy. If there was anything special you had to do to get it approved, please let me know.
    I would strongly suggest trying medical marjuana. If I wasn’t so hesitant about using it when I’m around my kids, I’m sure it would be more helpful. Just difficult to figure out which form of it to use and how much. It is better than taking strong medication, no real side effects and is not addictive. If you have any questions about it, I’d be happy to try and answer them.
    Thank you again. Just knowing there are other people out there that understand what I am going through is so helpful. You begin to feel very alone with this illness.

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