My only hope while I'm waiting on getting mg shunt to a working setting is this pain doctor. Finally had my appt yesterday ..he comes in and is like long I see your here for low back pain!!??? Umm noo headaches damn it headaches! ;( he switched my gabepentn to lyrica. And in three weeks recommended kenalog/ lidocaine injection/epidural. OK. So here I sit with a pounding headache still wondering if its ever going to get any better!?? Really to a snapping point. I left my job... I am hardly a wife. Friends don't get it... sorry ;( ranting away. Lyrica work any better? Anyone had these epidural injections? I have had both lidocaine and kenolog injections into my neck and shoulder muscles and trigger points all over my head neck and it wears off so fast and hardly numbed anything. Didn't seem worth the pain of getting them. I'm wondering if anyone has tried these?

I am so terribly sorry that you are going through this pain.  I am there with you....every single day, all day, every day.....plus they told me I have arthritis in my neck which my neuro did prescribe tizanidine.  I am only in my early 40s!  I would not wish this wicked disease on the devil himself.  And trust me, I've learned that most of the doctors don't giving a flying rat's ass about your pain....because I was not a person to him...at least that's my experience.

Yes, I have tried these injections and I could barely notice a difference.  Unfortunately, the pain doctor I went to wanted to do a neuro-stimulator which my insurance would not pay for.  The doctor looked me straight in the eye as I was suffering and said "if you sign a statement of financial responsibility" we can do the neurostimulator.  I said that I couldn't do that because I couldnt afford it. He told me the insurance was still in the process of being approved.  I found out later that he had, indeed, called the insurance before he asked me to sign this (and, thus the reason) and been told specifically that the procedure was an exclusion on my policy because it is considered experimental by my insurance.  Long story short, the pain management doctor looked straight into my eyes and lied to me so he could do this surgery.  Then I called a couple of days later to see if he could prescribe something....anything...to help with the pain.  He said NO.  He would do procedures but if I needed medication, I would have to go to my neurologist.  I told his nurse that the neuro sent me to him because she could not help me.  Pretty bad when a pain management doctor won't prescribe pain medicine. 

Now I am trying to get approval for bariatric surgery (VSG) in hopes that cutting out 3/4 of my stomach will make my symptoms go away.... 

One last thing, I did buy the migracap which is incredibly cold and it helps....a little sometimes.  It's around $50, but if you have any kind of barometric or allergy type headache along with the IIH crap, I would get it.



I'm sorry I am not really on the internet much anymore because I'm just not able, but I hope to eventually look back here.

Sorry for my late response! I've been struggling myself, so afraid I'm not checking the site as much. It honestly sounds like you two have had horrible doctor experiences. Unfortunately, there isn't a lot they can do for IIH pain..that's why the meds, injections, etc don't work. For me, I had to go through all the options and try the meds to get insurance to cover other suggestions..which still didn't work. I was lucky enough to get a pain specialist that recognized it was my IIH and referred me back to a neurosurgeon that has been awesome.

Unfortunately, everyone is different and can develop other health issues too. People with IIH are already prone to other headaches, but Chiari Malformation and other unrelated disorders can occur. The issue is trying to differentiate and manage them all. It sucks, but honestly all you can do is keep trying. If you don't feel like you're being heard move on. My neuro-ophthalmologist once told me to get 3 independent opinions before resigning, so try to find things like the migracap to take the edge off and keep going.

I hope you're able to find some relief soon..hang in there!!!

Julie

Are they talking epidurals as a nerve block?  To reduce inflammation?  Is this supposed to be a long acting pain reducer?  Sounds so painful........

Hello. He called them epidural injections to reduce inflammation.and the lidocaine is supposed to relieve pain but that hardly has helped in the past when I had trigger point injections. They put you under some so you aren't too uncomfortable
but it seems like just another thing that won't work. I've found nothing online stating its helped people with iih head
pain.. I hope you start feeling better gals!