How many years can one go with a migraine and still function?

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wildfire7676
New Member


Date Joined Jul 2013
Total Posts : 1
   Posted 7/13/2013 4:13 PM (GMT -6)   
I've been reading some of other's post here on migraines/headaches.  I am one of them.  It's been almost 4 years that I've lived with the pain and pressure every day and every minute of every hour.  I am 36 trying to raise my 9 year old son.  I feel like a failure sometime to him and then I think what was my life before this took over my life.  I have been through many proceedures and meds.  Needless to say the last specialist I seen told me that he was out of options....I had already done and tried everything he knew to do for me.  I was refered to a mayo clinic and I can't afford to travel that far and pay for hotels, plus the treatments and test.  So I was told by my neurologist that he's sorry and he'll see me back in 6months.  I go see him on Monday the 15.  The only thing I'm taking for them is kolpkins.  They really don't work, but I feel it's  still a try to take it every day.  How do I go about trying to find the person I was before I got these.  Unlike others I don't have a histroy of this.  It just started one day and never got better.  I have changed from who I was and I DON'T like who I am now....I do the best for my son, some days it's just sooo hard to keep going.  He deserves a mother that can do more.  Is it better to live in hell everyday or just give up on life.  I've been applying for disability for 4 years and this isn't good enough to quailify for it alone.  I feel like I'm at my breaking point and all test have came up negative....what else can I do?
 

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 7/16/2013 8:09 AM (GMT -6)   
Hi Wildfire,

I've been going through more or less the same thing for more than 10 years now (24/7, etc). Thinking back, I think that around the fourth or fifth year was one of the most difficult times I've had dealing with the situation (not necessarily in terms of pain, but more in mental anguish). I had also hit the ceiling for available treatments--my neurologist at the Jefferson Headache Center said that they had exhausted their options.

The main reasons that I was so upset were pretty much what you've described. I felt defeated, I constantly compared my life to the way that it had been before the headaches started and I felt like I was letting down the people around me.

Now the main problem is this cognitive process, and I think most non-stop pain sufferers experience it. At that point, we've assumed since day one that there would eventually be some sort of miracle cure, or at least something that'd make things manageable. We've thought that we have to beat these headaches--and that not being able to do so is a fault--and, once we do, we can resume life right where we left off.

Unfortunately this is very rarely the case. I'd been told for years that I'd do better if I accepted my life as a persistent headache/migraine sufferer, rather than fighting against that reality with every ounce of strength that I had. And for those first 4 or 5 years I did constantly fight it. I thought "this is not my life" and "I'll only have my life back when I beat this."

At a certain point, however, we realize that we're not the same people that we were before and we very likely never will be. We realize and accept (mostly, at least) that our pain is unlikely to relent anytime soon. At this point there's a choice to be made: continue fighting the headaches with everything you've got and believe that your life will never be good again until you've rid yourself of your headaches or you can accept that being a headache sufferer is part of your identity. If you go with option number 1, unless you find that miracle cure, you're never going to be happy (and even if you did fully banish your pain, I think you'd find that your life would still be unlikely to revert to how it was before the headaches). If you choose option 2, you accept that, although your life is different, that does not mean that you can't be happy and functional.

When I reached the point when I had to make that decision, I was so exhausted and unhappy from spending years believing that I could never be happy with constant pain in my life, I was depressed to the point of considering suicide. Needless to say, I hope that that isn't a road you go down. BUt I realized that if I was to have any chance to be happy and be able to cope with my pain, then I had to accept that I am a headache sufferer, not just someone that's going through a temporary rough spat of health. Once I made that decision, I started to find things that could make me happy (or, at the very least happier) and make me more functional. The main lesson to take away from this (and I think almost every longtime pain sufferer will tell you this) is that you can have a good, happy life even if you're in constant pain. It may not be the life that you expected before the pain started or what you imagine things being life if you do find that miracle cure, but it can be happy, productive and fulfilling. This is one of the most difficult lessons to learn in living with chronic pain but it very well might be the most important.

One final note, I mentioned the importance of accepting that your pain is likely going to continue, you should know that I don't mean to imply that you should stop seeking treatment or lose hope that something might come along that does help a lot. It's just that you can't base your happiness on that possibility.

Oh, and one more extremely important thing. If you're struggling this much (which is a completely normal amount for your situation), you should absolutely seek out mental health care--at the very least a therapist to talk to and, if possible, a psychiatrist to help with meds. Living in constant pain, especially for as many years as you have take a huge toll on your psychological well being (I've often said that the experience of having had to live with more than 10 years of non-stop pain is a lot harder than the pain itself, a point I'm sure you can relate to).

I hope this helps. I know it's not easy. Also, if you want to talk about SSDisability (which I'm on, though it took me about 3 years to make that happen) or specific treatment options, I'd be happy to share my experience with you.

Best wishes,

Ben
DX: NDPH (2003-present), Abdominal Migraine (2010-present), CRPS (1998-?)
RX: Lamictal, Indomethacin, Propranolol, Provigil, Viibyrd, Oxycontin, Clonazepam, Lorazepam, Melatonin, Magnesium
CPAP for mild sleep apnea
PRN: Oxycodone, Alprazolam

@ Jefferson Headache Center, Philadelphia, PA @

goawaylyme
New Member


Date Joined Jul 2013
Total Posts : 6
   Posted 7/17/2013 7:53 AM (GMT -6)   
Intense pressure in the head, migraines, pressure in my frontal sinuses, but my nose isnt stuffy, cognitive problems, etc.... I have had it two years.


Went to all the doctors in the world.


You NEED to get tested for LYME DISEASE and co-infections from a tick bite (Babesia, Mycoplasma, Bartonella, Ehrlichia, viruses, etc.)

I didnt test fully positive for Lyme.. I only had a few strands. I did test positive for a co-infection, further supporting th fact I have Lyme and was bitten by a tick. Not everyone gets the bullseye rash and the bacteria can lye dormant for years.


My head pressure is slowly getting better. I strongly suggest you join the Lyme Disease forum if you really want your life back and find an LLMD (Lyme Literate Medical Doctor).


Don't wait around and shun it off like I did. "Lyme disease is just sore joints and stiffness.." .... I was far far far from the truth. Over 100+ symptoms.

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 7/22/2013 8:33 AM (GMT -6)   
As I've said many times on this forum, it's extremely unlikely that a headache specialist (or any sort of neurologist or even a general practitioner) would forego a test for Lyme. However, in the rare circumstance that you have not been tested then, yes, you should request bloodwork (and you'd be tested for many things aside from Lyme disease).

Lyme isn't something to be ignored, and it's certainly something nearly everyone with an idiopathic neurological disorder should be tested for, but I'd be very wary of the claim that's frequently made that many (or even according to some people, most) headache patients really just need to be treated for Lyme disease, regardless of what lab results say. There is some evidence that Lyme might be a source of persistent neurological problems in some people. But any doctor worth his/her salt will have you tested and, unless the test comes back positive, there's no reason to see an LLMD.
DX: NDPH (2003-present), Abdominal Migraine (2010-present), CRPS (1998-?)
RX: Lamictal, Indomethacin, Propranolol, Provigil, Viibyrd, Oxycontin, Clonazepam, Lorazepam, Melatonin, Magnesium
CPAP for mild sleep apnea
PRN: Oxycodone, Alprazolam

@ Jefferson Headache Center, Philadelphia, PA @
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