Cindy's Journey with chronic migraines

By cindy4hope

1 min read

Hello, My name is Cindy and I am a chronic migraine sufferer. I have dealt with migraines for over 20 years, but the past two years my migraines have gotten more intense. I had epilepsy brain surgery in 2002 and though it was very successful and I no longer have seizures, I am left to deal with migraines on a daily basis.

I have tried many migraine medications and other therapy to help deal with this disease...here is a list of a few meds and treatments I've tried with no success...Imitrex, maxalt, frova, relpax, midrin, zanaflex, toradol, loratab, fioricet, klonipan, topamax, coQ10, feverfew, butterbur, Vitamin B, Vitamin D, migranal nasal spray, DHE protocol, botox injections, massage therapy, chiropractor. None of these treatments have given me any relief, but I refuse to give up HOPE! I never gave up on hope that I would one day be seizure FREE and I am! Staying positive that the doctors will find a treatment that will help me is what keeps me going and my faith in God!

Though I've suffered through seizures, brain surgery, and now migraines, it's made me the person I am today. I am much more compassionate and understanding for those who are going through the same pain and pray that even if I just help one person than it was all worth my pain. If God can use what I've been through to bring Him glory and for me to help others than that is my purpose and I feel blessed to help others to deal with and understand their physcial and emotional side of this terrible migraine disease. I'm looking forward to the day our doctors can say we have a cure for migraine disease. There is always HOPE in everything when we have the faith to believe!

Many Blessings,

Cindy Holt

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Hi Cindy- for how long did you use the butterbur/coQ10 treatment, and did it also contain magnesium? I ask because I personally know 2 people who use a supplement that uses all three, and they're pretty happy with it, but they had to keep taking it for a few months before they noticed any improvements. I believe it's called Migravent. Good luck, I admire your optimism, and God bless!
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 I'm finding it varies by state, doctor, insurance company.... My rimary dr filed a short term disabilty claim for me to have intense physical therapy for 6 weeks in an effort to reduce the intensity and number of migraines I was having, so I could go back to workand be more effective (I have chronic migraines and to be honest, my ability to think clearly, analytically has been severely compromised). I took the 6 weeks and found out days before I returned to work that my neurologist submitted paperwork that did NOT support the disability claim. So now, with 6 weeks off from work UNPAIF, my finances are a nightmare and the stress is causing even worse migraines and my depression is overwhelming. So I am finding that some people can get disability, others cannot. It just really, really depends on the willingness of your drs to cooperate in filling out the paperwork appropriately. It doesn't seem to have anythng to do with how severe your health condition (I have had migraines for 15 years, tries every migraines medication that exists with no success and even my neurologist admits there is nothing more he can really do for me, but he refuses to support disability and he's considered the best migraine specialist in the state). It IS comofrting to see I'm not alone on this site, though, as I never meet chronic migraine sufferers in my everyday life. It's amazing how much it can reallt destroy your ability to just function successfully.
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Linda brings up a good point that many patients and doctors often forget: Combinations of medicines and treatment modalities often work synergistically to better outcomes for patients who try them. Are you still working with a headache specialist, or just a neurologist? Did you have headache or Migraine with your epilepsy? I know some I've met have these as a part of their seizure activity - postdrome etc.
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Hey Cindy! So sorry your suffering. I just had my 3 year anniversary last month with this migraine 🙁 I've had migraines for the last 16 years but this one has been non-stop for three years. I have tried just about everything you have and then some. My Neurologist just put me on a new med and I almost feel human. I wasn't real happy about taking it, but I get a few good hours a day out of it. I am usually curled up in a ball on the couch. The medicine is called Nucynta ER 50 mg. I will probably have to go up on the dose, but at least I'm out of my PJ's 😀 The later it gets in the day the worse I hurt but I'm not complaining! My house is getting cleaner every day! I wish you and everyone else the best. I have given up on a cure. I just want some relief!
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have you ever heard of a 3 day IV push- I have suffered my entire life (I am now 50) I had it done the last 3 days of March and literally not had a headache since them.