New Daily Persistent Headache Support Group

Good evening... I have just been diagnosed with NDPH after 3 years of total h*ll. I have been on 37 different medications with little to no relief. I am scheduled to go to Mayo Clinic in January but I don't think that really is best for me at this point. I was refered to Tampa General Hospitals program and had some success. I am currently taking Zanaflex and getting injections of Maricaine & Lidocaine which has helped so much but only temporary. My question for anyone is... Has anyone ever had Radio Frequency treatment of the Occipital Nerve? This is what they want me to do stating it will give me up to 8 months relief. Has anyone heard of this or had it done? Thanks in advance for your input.

Welcome to the group! Sorry to hear about your pain. I haven't had that treatment but have heard a bit about it and it didn't sound like there was enough data for me to look into it. Anyone that states it "will give you up 8 months of relief" is lying. It "could" give you relief. I would ask for some studies on its effectiveness on your condition before forking over the money. Even a statement such as out of 10 daily headache patients we trialed on this, 5 had significant relief is something. There really is a lack of data on treatments for daily headaches...its mostly migraine. Often, unfortunately, a lot of the alternative stuff isn't very effective and quite expensive. I have also tried about that many meds and treatments. Feel free to list what you've tried and we can try to chime in with any suggestions. Are you sure they trialed you long enough on each? The preventative types can sometimes take 2-4 months at the full dose.

If you got any bit of relief from one, adding another (or adding it to your muscle relaxer & injections) may give you more significant relief. Of the alternative treatments, my top recommendations are physical and massage therapy. Likely to be covered by insurance, very unlikely to hurt, and will at least rule out muscular exacerbations (physical) or relax/de-stress you (massage). I got some posture tips from the PT that have helped me, and continue the massage to help my neck. No significant head help however for me though. We all take what we can get though. My best treatment has been narcotics. Only thing to significantly help me in the long run. Everything else either did nothing, couldn't tolerate, or was short lived. Hang in there! Best wishes.

I had a treatment call TCDS (trans-cardial direct stimulation), which is a radio frequency type of treatment. The Dr. places electrodes all over the head and place this head piece on top and the frequency is "supposed" to lessen the severity of the headaches. Needless to say, I wasted one week of my time with this treatment, bc my pain was worse than before I began the treatments. It almost felt as if the frequency moved the headache to another location. I was promised that this would help as well, but to no avail.

I think the treatment you are talking about is Radiofrequency Ablation. I have heard of it and it did help someone on this forum a long time ago, though there have also been some who didn't get much help out of it (I am having trouble finding any particular links to give you though). It is not an alternative type treatment, but is actually one of the rarely used mainstream western medicine things. The reason it isn't used much is that they use radiofrequency to generate heat and basically burn the nerve (the radio waves can be very specifically targeted and no surgery is needed to get to the nerve). Obviously burning the nerve is invasive (and it may make parts of your head numb) so it is not done lightly, but sometimes it can work.

There is more information on the general procedure here on wikipedeia (though not specifically related to the occipital nerve) http://en.wikipedia.org/wiki/Radiofrequency_ablation

Hi and welcome to the group. Sorry to hear you have been suffering for 3 years. Having been through a lot of meds and treatments is fairly typical unfortunately.

Have you previously had nerve blocks? It sounds like what they are hoping to do is radiofrequency ablation of the nerves but often they try nerve blocks first.

I just had Radiofrequency Ablation at C2, C3 and C4 on the left side with no relief for me. It was painless and just had some mild discomfort afterwards. I too am in the Tampa area. I did not have any relief at Tampa General, but I only did some outpatient stuff at the headache clinic down there and never any of the inpatient stuff.