It has been such a long time since I have written a new post. The past two months haven't been so good. I have had a change in migraine pattern. The slick fox that is migraine disease migrated to new areas previously unaffected. I am now having night migraines. Sleep is impossible because the pain keeps waking me up. By the time morning rolls around my head feels like a ton of bricks has been dropped on it. I now feel the pain up to the top of my head and the occipital nerves are tender to the touch. When I put pressure on them the pain in the front increases. The migraines began to breakthrough the neurostimulator as if they are trying to overpower the electrical pulses. Some attacks are worsened when it's turned on so I suffer through them with ineffective pain medications that barely touch the pain and lots of ice packs.
That is only the beginning. The frequency in which I would have fibromyalgia flareups has increased exponentially. The pain is unbearable. Most times my legs feel like punching
bags because the pain is pounding up and down both legs, sometimes for an hour straight. My joints hurt 24/7 and I started having jaw pain which makes my teeth hurt so bad that I can brush my teeth or chew. I now get fevers 4-6 days a week around early evening to late night. They range from 99.3 to 99.9. I am also severely fatigued and endure sharp chest pains when I breathe (it's hurting right now as I'm typing this; as well as my right ankle). I occasionally get edema of the legs, ankles and feet and my hands swell up from time to time. I am shedding a lot of hair. After brushing my hair I can pull out a handful of it from the brush.
The worst part is the constant pain, burning and stiffness in my wrists, hands and fingers. I just found out the other day that I have carpal tunnel syndrome and need to wear braces on my hands at night while I sleep to keep them straight. I also get numbness in my fingers and my feet, especially when sitting or sleeping. I now get very dry eyes and burning. This happens mostly during the day, however, when I lay down to go to sleep my eyes tear up so much I look like I'm crying. The insomnia is driving me insane. Between the migraines and body pain I can never get a full night's sleep. Lack of sleep is intensifying the fibro fog and migraine brain; unable to concentrate or remember things. It all feels like too much; too many things going on at once.
Tuesday I had an appointment with my rheumatologist about everything that has been going on for the past two to three weeks. She said that there could be a variety of reasons to why I'm having these symptoms. So she had me get chest X-rays, blood drawn and do a urinalysis. My fear is that it's lupus. A few members of my family had lupus so my first reaction was "It must be lupus". It could very well not be the case and be nothing at all and just an extremely severe flare up or it could be something completely different. It's going to take three days before I find out what's going on. Today is day two and the suspense is killing me. It's all that I think about. I'm praying for some good news because I really won't be able to handle getting diagnosed with something else. I already have too many as it is.
FDA lists Migraines as Nominee for New Research
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FDA lists Migraines as Nominee for New Research
Have you seen Migraine.com's article from earlier this week?
The FDA was looking for comments on several disorders, including migraine, from sufferers as part of a patient-focused drug development initiative.
Migraines Aren't Easy to Treat, But Dr. Oz Seems to Think So
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ATTENTION ALL MEMBERS! ……. go to Dr. Oz’s page and comment under this post and get them to do a show on CM ….he has millions of viewers, this could be really huge!!
DR. OZ HAS A FB PAGE!!! Please go to this page, comment and maybe he will help fix the problems he creates by saying migraines are easy to treat!!
COPY AND PASTE THIS MESSAGE BELOW OR WRITE YOUR OWN!
Dr Oz.,
I would like to address and issue with your program and misinformation of the public. You have such a great reputation that if you say it, it is practically gospel. In the past when you have done shows on migraine, it comes off that it is an easy thing to treat and not a serious condition. Family and friends will come to us and say that “Dr. Oz said” and then begin to tell us what we should do. There needs to be attention to those that are chronic like myself and the 37 million others. The lack of understanding makes people think we are lazy, complainers and the worst drug seekers. The World Health Recognizes the seriousness of this disease and lists it in the top 20 most disabling conditions. We desperately need you to help us inform the public that what we are going through is more than just A migraine. We suffer day in and out, 15 or more a month, and just one can last anywhere from 4hrs to 4wks. They can back up on each other and can be suffering from several types of migraines simultaneously. The agony we live with is dismissed. We have a 65% higher risk for suicide and are plagued with co-morbid conditions such as depression, anxiety, fibromyalgia, RDS and so many more.
This month Chronic Migraine Awareness will be highlighting these co-morbid conditions. We need your help to get the message out that this is a disease, it’s not “all in our heads”. It effects every aspect of our lives. We have lost jobs, friends, family, our identities too. PLEASE PLEASE PLEASE!!!!! HELP US!!!
My Personal Letter to Dr. Oz
Dr. Oz,
I am a Chronic Migraine sufferer. I have had Migraine disease for 26 years (since the age of 8). They have progressively gotten to the point where I am now chronic. This is all I know of my life. Pain = Living. If treating Migraines was such an easy fix, then shouldn't I have been relieved of this debilitating and disabling neurological disease years ago? Before I became a CMer five years ago? I have tried all treatments including, acupuncture, chiropractic care, Botox injections. nerve and C2 ganglion blocks, biofeedback, meditation, acupressure, breathing, guided imagery, elimination diets, cranial fascial massage therapy, and dozens of prescriptions that failed or gave me serious adverse reactions. My last resort this past spring was to get a peripheral nerve stimulator implant to help control my pain. Unfortunately, the pain has learned how to avoid it and has moved to areas where I had never had pain before. There are also the comorbid conditions/illnesses that come along with prolonged Migraine disease. I currently now have crippling fibromyalgia, severe major depressive disorder, severe anxiety, and insomnia. When you do a show about Migraine, you are addressing the Episodic Migraine sufferer. Chronic Migraineurs are never represented and we have to endure the millions of suggestions heard on your show and from commercials for so-called migraine medications. It is time that my serious disease be accurately portrayed with real sufferers like myself. I have had to learn to live despite my pain. I can not be the mother, wife, sister, daughter or friend that I would like to be because my life is spent in a dark room covered in ice packs crying in helpless pain. It's horrible and I wouldn't wish this life on my worst enemy. Please seriously consider having a show about this part of Migraine disease that is left in the dark. It's hard having a legitimate disease that people don't believe in.
Chronic Migraine Awareness https://www.facebook.com/droz please go to this link and post a comment…help us bring awareness!!!!! …Please share this and have all you know support our cause!!
Dr. Mehmet Oz
Living With Chronic Migraines
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