meningitis that began it all

View previous topic View next topic Go down

meningitis that began it all

Post  greent on Mon Jul 18, 2011 3:59 pm

Hello all, I'm having an extremely frustrating day with head pain (well, three years really). I know it's a long shot, but did anyone else here have a history of viral meningitis that preceded their chronic daily migraines? That seems to have been the beginning of mine and apparently I'm my neurologist's toughest case. He even presented a case study on me at a recent conference to see if any other headache specialists had ideas on how to help me, but nothing much materialized. It is becoming more and more difficult to keep a positive outlook as I can no longer remember what it's like to have pain free days (the last one was so long ago) and my migraines are so atypical, regular migraine meds don't help the pain.

greent

Posts : 48
Join date : 2010-06-01

Back to top Go down

Re: meningitis that began it all

Post  tortoisegirl on Mon Jul 18, 2011 7:17 pm

Do you fit the chronic daily headache profile (more frequent headaches until they became daily) or maybe the new Daily persistent headache profile (sudden onset daily headache, often 24/7)? There are of course more diagnostic criteria than that, but its the main difference. You can have migraines on top of either of them. Thought I'd mention it.

Many NDPH cases begin with illness such as meningitis or a sinus infection, an injury, surgery, trauma, etc. NDPH can be even more resistant to treatment than CDH. There isn't really any difference in the treatments that I know of besides knowing that NDH is even more resistant to treatment. I was misdiagnosed with migraine + CDH for the first 2.5 years or so (now at 5.5 years)--I only have NDPH actually. None of the traditional stuff has helped me--just muscle relaxers and daily narcotics (after trying & failing "everything").

Will probably try Botox for a second time even though it barely helped the first time (1 week of 50%). There are always more things to try, but often they are so similar to wheat you already have tried that they aren't worth the effort, cost, and disappointment. I have got to a point where I just do my best to cope and live my life. The narcotics are definitely the most beneficial thing I've tried though-they really improve my quality of life. I'm a big advocate for wishing doctors would let more daily headache folks try them (who have tried & failed most everything already). Best wishes.

tortoisegirl

Posts : 357
Join date : 2009-12-14
Location : Washington

Back to top Go down

Re: meningitis that began it all

Post  greent on Mon Jul 18, 2011 7:45 pm

I have not heard of those two profiles, but it seems I fit the first one. However, my symptoms have changed and morphed so many times and most of these changes began abruptly (leg and arm numbness, pain between the eyes, facial pain). I also feel like I've tried most everything with little luck. My doctors are trying all of these longterm preventive meds, but seem to lack compassion for helping me cope with my every day pain. I take muscle relaxers which helps take the edge off the facial pain, but my doctor is hesitant to prescribe these as he says these are addictive. Pain killers are hard to come by even though I doubt I fit the profile of a drug seeker. I guess it's just starting to hit me that this may never get better and I will have to just cope. It's so bad on most days though, that I wonder how I'm going to do that sometimes and hold down a job and a life worth living while in pain. How do you stay positive?

greent

Posts : 48
Join date : 2010-06-01

Back to top Go down

Re: meningitis that began it all

Post  tortoisegirl on Tue Jul 19, 2011 9:24 pm

My big line is "it could be worse". I have to remind myself of that several times a day at least! I have many health problems on top of my 24/7 headache unfortunately, but I still have so much to be thankful for. Actually reminding yourself of these things daily, whether they be your family, a certain activity, or even something that makes you laugh or smile, really helps. Have you seen a pain doctor? Narcotics are not for everyone, but a good pain doctor should be able to try some treatments which can include narcotics to better manage your day to day life.

CDH and NDPH both can be very preventative resistant, so you get to a point the meds are quite repetitive and you may want to seek alternative treatments like a pain doc, Botox, occipital nerve blocks, chiro, massage, etc, etc. Sure lots of meds are addictive, but taken correctly and in cases of true pain in people which aren't prone to addiction (it would be prevalent already in their lives), its very low risk. If your doctor hassles you about medications which help you function when you've shown to have failed many treatments, I would find another doctor. Yes it really does get to a point for some of us we put quality of life first! Best wishes.

tortoisegirl

Posts : 357
Join date : 2009-12-14
Location : Washington

Back to top Go down

Re: meningitis that began it all

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum