I have Hemicrania Continua, a headache disorder. My headaches used to be controlled with a large amount of Indomethacin.I have had trouble tolerating the indo and always have to eat a large meal when I take it as well as take 2 different stomach meds. I also am continuously have blood tests to make sure the indo is not hurting my liver or kidneys. And recently (about 2 weeks ago) I found out I have a stomach ulcer and had to stop taking the indomethacin. The Indomethacin is the only thing that works for HC and all the other meds that sometimes work I have tried.
I did some research and found that Occipital Nerve Stimulators can work for HC so I talked to my neuro about it at she referred me to another neuro because she doesn't do them. The wait time for an appt with this neruo is 5 months... so my dr sent me for a Occipital Nerve block with her becaus she said that would be the first thing she would do to see if ONS would work for me.
I had the ONB a little over 2 weeks ago and the injection of the numbing medicine made my head ache go away and stay away for the rest of the day... the steroids did not work.
The resident I talked to said my response to the numbing medicine was very good, and that a response to the steroids would be a bonus.
Anyways... for me right now I just want to get things done but the switch between the neuros seems to be taking a long time and I'm afraid I'm getting lost in the middle. I really want to try the ONS.
Do you have any suggestions on what I can say and/or what is being too pushy with getting things done?
Also do you have any expereince with ONS and specifically for Hemicrania Continua?
I can't take the indomethacin anymore and I just need to try something else... plus I'm only 20, I didn't need to be takign so many meds (I was on 2 different stomach meds to try and protect my stomach while taking the indomethacin plus I always took it w/ my meals)
Thank you for the interesting post. I was getting excited about telling you to just take prilosec until I got to your last paragraph!
I mostly just prescribe these days (that and psychotherapy-- no more block work) except for doing occipital blocks on a teenager a couple weeks ago-- he has continuous headaches and I just couldn't resist (I didn't even charge-- he had no insurance) and he got a good block... but alas, no pain relief.
I don't know much offhand about your condition as far as the pathology involved. Occipital nerve blocks are interesting because they mainly affect the sensation of the scalp, but sometimes they seem to do much more-- it is thought that the anesthetic somehow tracks back along the nerve and has an impact on the firing of nerves in the collections of neurons along the cervical spinal column.
A couple desperate thoughts to throw out-- I would call the academic teaching hospitals (it sounds, though, that you already did that, since you mentioned a 'resident'). If you live near a big city, you may find a clinical trial by going to clinicaltrials.gov and searching under occipital nerve or headaches. Finally, some time ago I read about the development of local anesthetics that are bound in collagen beads that slowly dissolve over time, providing months of analgesia... I don't know of any product commercially available but that might be helpful should it ever appear on the scene.
I'm sorry-- I don't know of more at this point. I will sleep on it, though, and write to you if I think of something else, or if something pops up when I look things up tomorrow.
Here is some basic info on HC:
When not on the Indomethacin I have a 24/7 throbbing/grinding pain on my right side of my head and then about 6-8 times a day I have flares of stabbing pain that can last anywhere from a few min. to hours, this is always on the right side and above my eye and down the right side of my head.
I don't have very many of the autonomic features, I usually just have some redness of the eye and tearing in my right eye (the side the headaches are on)... one thing to note though is that when I was numb from the nerve block I didn't have any headaches but my right eye still got red and teary as if I was having a headache then.
I am at an academic hospital now... they were the ones who finally dx me with Hemicrania Continua a full year and many different treatments after I started having my headaches.
There have been no clinical trails that I have ever found... plus the fact that I'm dx with Hemicrania Continua usually excludes me because they want people with occipital neuralgia or migraines or something else.
The reason I'm currently so set on a stimulator is because of a trail I found it was small, but it was done on people with hemicrania continua and they all received occipital nerve stimulators... it was published in the Nov. 2008 Lancet. Also because it makes sense to me... when my nerve was numb I didn't have (or at least couldn't feel) my headaches... and the nerve stimulator would act in a similar way, not numbing the nerve but giving the nerve a different signal other than pain. I think it would be safe to assume that I would still have the eye symptoms like I did with the nerve block.... but that I can live with.
The local anesthetics in the collagen beads you mention seem interesting.... I've never heard of that before... It's defiantly something to look into.
Thanks so much for your help! I really appreciate it. :)
I spent all of today waiting to hear back from the new neuro if the ONS is an option for me… so I’ve been doing what I always do when I’m stressed and the only thing I can do it wait… I’ve been researching HC, Occipital Nerve Blocks and different types of treatments.
It seems like there are a few things that can be done after an ONB is done and it works.
One would be continuing with the blocks but that wouldn’t work for me since my relief came only from the local anesthetic which doesn’t even last 24 hours.
Another option could be decompression surgery… but this one seems like a toss up because unless my nerve is pinched it won’t help and just because the block worked it doesn’t mean my nerve is pinched.
Radiofrequency Nerve Ablation was another thing I found… but this one destroys the nerve, which make this treatment very permanent and that scares me a bit.
Another thing I found was simply (though it probably is simple at all :-) )removing the nerve… but again this is very permanent and I’m not sure I really like that.
Then there is the ONS… which is not permanent… and frankly I really like this option.
I tired searching so something more on what you mentioned earlier… the longer acting anesthetics and this is what I found… http://www.med.nyu.edu/oil/tech/therapeutics/tgrant.html I couldn’t find anything on how long it lasts or if it’s available and I’m not even sure if this was what you were referring to.
Am I right to think that something like the ONS would be a better starting point simply because it’s not permanent? I guess in my mind it just makes more sense to start with the things that are the least invasive or permanent and move on to the other stuff if it doesn’t work… isn’t that why I stayed on my Indomethacin for as long as I could before moving on to these more invasive treatments? What do you think?
Ok… I’m done rambling for now... and hopefully I will hear from the doctor’s office tomorrow cause I’ve been off my indo for a long time now and really could use some pain relief or at least a step towards some possible pain relief; plus I don’t want to get lost in the no doctor zone between my two neuros!
Any thoughts you have on this are much appreciated!
Hello! I have another "is occipital stimulation right for me?" situation on which I'd greatly appreciate your input.
I am 24 years old and have been suffering from chronic neck pain for about thirteen years. It started out with minor headaches and general stiffness. As I grew older, but especially in the last five years, it has gotten progressively worse at a quicker pace. On a scale of one to ten, at best the pain is ever maybe a two - not that bad, but still definitely there. At the worst it is a nine, which finds me curled up in bed, sobbing and unable to move, talk or think because the pain is so bad.
About a year ago my pain specialist diagnosed me with occipital neuralgia. The pain starts at the very base of my skull, bilaterally, and follows the three occipital nerves. This either causes or exacerbates TMJ symptoms in my jaw. The pain includes areas tenderness at the base of my skull, shooting and pounding pains along all three occipital nerves, stabbing pain behind my eyes and at my temples (sometimes on one side or another, sometimes both), severe nausea that can cause me to vomit, throbbing and constant headaches.
For treatment I have had physical, craniosacral, and massage therapy. I have seen physicians, neurologists, muscle specialists, chiropractors, and pain specialists. I have had X-Rays (the bones look fine), two cervical spine MRI (showed nothing but very mild degenerative disk), and been both on exercise and rest regimens. I have been prescribed Naproxen, Amitriptyline off-label, and Tramadol, none of which helped at all and I have stopped taking. I have also been on the muscle relaxant Tizanidine, which at least helps knock me out enough to let me get some sleep. I now am taking Fioricet, which doesn't do much of anything for the pain, 1800mg of Neurontin, which has decreased the pain by maybe one quarter. The bad episodes happen just as frequently but the Neurontin has knocked the everyday pain back a notch.
For treatments beyond medications I have tried a C3 nerve block (cortizone and lidocaine) that had no effects whatsoever. I then tried an occipital nerve block using cortizone and lidocaine again. Magically, it worked! This not only diagnosed where the pain is coming from, but it helped numb it. Unfortunately it only worked for about 4 days, which my doctor said meant the steroid was not working. When my doctor tried the occipital nerve block again, this time with a double dose, the effects lasted only one day longer making it not a viable long-term solution. Then, two weeks ago, I tried an occipital block using Sarapin. This one had no effect, but I and my doctor feel that the specialist who did the injection at a teaching hospital (my local hospital did not have access to the Sarapin) did not do it in the right place.
My next two options are radiofrequency pulse ablation, rhizotomy or an occipital nerve stimulator. Can you tell me what you feel are the pros and cons are for each and if there is one you would suggest over the others for me to try next?
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