New here - would appreciate advice
 

Hello,

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:

Date. 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.

Thanks!

I had my first injection 1/16/2012 which worked great onlly time in 2 years I have been pain free I was admitted to the hospital when it was done and gave up on fighting to get in to see them after months of trying to get an apt. My neurosurgeon got me into a different pain specialist and my 2nd shot did not help at all actually made me feel horrible. So I am going for a consult of a stimulator trial. It is my next hope to try avoiding a second brain surgery. I don't know about eds but my approach to dealing with my rare brain cyst which led to ON is to fight to get doctors to listen.

Thank-you/stimulator trial
 

Thank- you for your reply. I have been pushing for so long to finally get a diagnosis and find the right docs that I thought that part was over. Your answer is what I needed to hear...time to start standing up for what I believe is right.

I hope your stimulator trial helps you. My youngest daughter had an occipital nerve stimulator implant when she was 13 years old. The stimulator brought her headaches down from a near constant 8-9 to a 2-3 and enabled her to return to school. (She has POTS and now we now EDS) The only problem was the battery life was supposed to last 5 years, but she used her stimulator constantly and the battery ran out in 18 months. :(.

My daughter is now is high school and will have a new stimulator with a rechargeable battery inserted this summer. I hope you can find the same kind of success (without the battery issue!). Medtronic told my daughter to turn it off as much as possible - especially at night but getting through to a 13 year old is difficult.

Good luck to you and thank you!

Heatherm176
 

Glad to hear that you are in a position to consider a stim,,,,,
Please get in touch with someone who has one first.....

There is a lot you need to know that will make the process better for you if you do.
Feel free to private message me,,I have one....don't just jump in without talking to someone first.....Beth