I am 48 years old and have been living with headaches/migraines for 30+ years. I was recently diagnosed with ehlers danlos hypermobility, (EDS) a connective tissue disorder and Factor V Leiden, a blood clotting disorder. I have taken virtually every drug for headaches. Effexor and topamax worked initially but eventually lost their effectiveness.
On 3/2/12, I started taking Nucynta, a pain medication for EDS joint and muscle pain. In many ways Nucynta gave me my life back. I also changed neurologists and was diagnosed with occipital and trigeminal neuralgia. I had nerve blocks on the following dates with a description of the outcome:
3/8/12. Blocks worked within a few days and I was headache free for 2 wks
3/26/12. Blocks worked immediately and I was headache free for 5 mos
8/13/12. Blocks did not work - made headache worse
8/13/12. Started Tri Leptal
9/1/12. Stopped Topamax (after 10 years)
10/2/12. Back on Topamax.
Last week I met with my neurologist to discuss surgical options, because my
headaches are back with a vengeance. My neuro is convinced the Nucynta is causing rebound headaches. (Nucynta is prescribed by an EDS pain specialist and my neuro is also a pain specialist).
I did not have the facts above when I met with my doctor, but I do not understand how I could go 5 months headache free while taking Nucynta and then blame Nucynta for my headaches coming back and the third block not working. I had been told by my daughter's pediatric headache specialist that if a nerve block worked the first 2 times and then then made a headache worse the third time then it is due to a rare reaction to the block.
I fully understand that taking any type of pain med or too many abortive meds can cause rebound headaches. I have had rebound headaches with imitrex and other Triptans.
My headaches vary so much that there is not a pattern. Right now they are every 5-6 days and last only an excruciating night, but the pattern over my life (and that of my two daughters) is that I have always had difficulty getting rid of a headache. Some headaches can last up to a week or two. Migranol is the only abortive that helps. My youngest daughter only found relief with an
occipital stimulator implant when she was 13 years old.
I really do like my new neuro. My problem is that he does not understand EDS. For me, the pain of EDS is comparable to migraine in different parts of my body. I honestly do not know what is worse - the EDS pain or the headache pain...it just depends on the day.
Any advice on how to approach this issue would be greatly appreciated.