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marie1999 posted:
I am in desperate need of any suggestions anyone might have to help me live with the constant pain I am in.
September 08, 2010 I was diagnosed with "complex" or "complicated" migraine, since then the diagnosis has changed a bit. It is now A typical complex migraine with prolonged aura and fibromyalgia variant and I have not been symptom free since September 08, 2010.
I have had a second opinion, both neurologists agree with the diagnosis and I have been on the entire alphabet of medications.
Just recently my neurologist told me there is nothing more they can do for me so he was going to refer me to a neuropathic pain specialist to see if there is anything they can do but that I need to look into short term disability and prepare myself for lifetime disability.
I have been in pain, often severe for well over a year now and I am getting dangerously close to losing my job.
Any suggestions would be greatly appreciated.
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NeNe_11 responded:
Are you taking meds to help with your pain?
 
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Tygr417 responded:
Hi,
I have had chronic migraine for the past 6 years. and have near daily migraines that put me in bed about 1/3 of the time. I can relate to your desperation to be pain free. I have to take oxycodone almost daily. It only stops the migraine about half the time and the other half it simply helps to ease the pain.
As a teen I used to get them with my menstrual cycle, but stopped getting them once I had a child. About 6 years ago I entered the peri-menopausal phase of life and have been afflicted with migraine since. I have been on every medication out there, trying both preventatives as well as rescue meds. I've been through the gamot (sp?) of side effects as a result. Oxycodone seems to be the only medication that gives me any relief.
About a year ago, the FDA approved Botox as a treatment for migraine and I started the injections which seemed to help greatly at first. However, they are no longer affective and so expensive that I have decided not to continue with that therapy. It is something you might want to discuss with your doctor and at least try.
The other thing that is somewhat helpful at times is Novocaine injections. They will break the "cycle" if I get into a pattern of unending headache for more than 14 consecutive days. They don't always work either, but it is something to consider.
I did lose my job due to my migraines and applied for disability and was denied. I refiled with an attorney and appealed each denial and was still ultimately told that I have run out of opportunity to file again. If you plan to file, make sure you have a good attorney to assist you and that you have an abundance of documentation to support your case. It is a difficult thing to prove and isn't usually a good candidate for disability cases.
I don't believe you have to accept this condition as a lifetime ailment. My neurologist believes mine to be hormonal related and is very optimistic that once I hit menopause they will likely diminish and possibly stop altogether. I don't know your age or if my diagnosis would pertain to you at all, but I know that there are still things to try out there and you should not give up.
Chronic pain has to be the absolute worst thing one can deal with on a daily basis and I truly can relate and am very sympathetic for you. I wish I had something more to offer.
If you have not already done so, I would suggest keeping a daily diary of your headaches. Document everything that occurs; from the weather conditions, to what you ate and when, to the time the headache started. Make sure to document the level of pain on a scale of 1-10, what symptoms you experienced before and during the headache and document what was going on in your life at the time. Also document what you took for the pain, when you took it and how much you used.
I found after keeping one for about 6 months that stress, weather changes, loss of sleep, not eating frequently enough, eating certain foods and alcohol consumption were my triggers. Thus I am able to avoid most of those even though it doesn't help much. My diary also is suggestive that I could be experiencing rebound headache from over medicating. So currently I am gradually reducing the amount of pain medication I take to confirm or disprove the theory. Granted, this isn't helping with the pain control or rescuing me from they symptoms at all, but it is an evil necessary to determine if rebound is a possibility.
I would also suggest you scouring the websites dedicated to migraine and trying to find a neurologist that is local to you and that is recommended by these sites. Just because a doctor specializes in neurology does not necessarily make him/her a "good" neurologist.
I definitely don't think you should give up. Keep trying to fight this condition. Be open to trying about anything, even if it is painful or seems silly. I haven't given up, and I have faith that eventually I will be pain free. My best of luck to you.
 
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carpetcrawler5 responded:
If you've tried everything, you probably could get disability. Your neuro can sign papers to send to the Soc.Sec. office saying you can't be helped and can't work.

try getting excercise that isn't too strenous, like walking and swimming, it will help your blood circulate better.

Have you ever tried Indomethicin or Etadolux? You can use them as an abortive if you have to function on a certain day, but don't take them regularly because they can cause stomach upset. Also look into getting a TENS unit. Also put ice around your head. Get techni-ice and cut them and freeze them, and put them into bandanas and wrap them around your head.
 
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carpetcrawler5 responded:
You can probably get the disabilty, just have your dr sign papers saying you have tried everything and may not be able to work. Also try putting ice around your head.
 
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itmatsb responded:
Hi, So sorry to hear about your pain. If you've only tried meds, then you haven't tried everything at all. Botox and nerve block injections helped me tremendously. Have you tried those? Have you tried accupuncture?

When people are trying to help you, it would be helpful to have you respond back. Your answers will also help others to help you.

You say that you are in desperate need for help, so answer back.


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