ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Mei Mei on November 05, 2010, 09:11:11 pm
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Just saw this on the 'Net and thought you might be interested. Maybe I have Occipital Neuralgia instead of Cluster headaches. Included in these links are contact information to Clinical Trials if you'd think you can benefit from participating:
http://www.ninds.nih.gov/disorders/occipitalneuralgia/occipitalneuralgia.htm
http://patientinfo.ninds.nih.gov/DiseaseInfo.aspx?did=237&dlevel=2
Mei Mei
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Mei Mei,
I agree that I too have occipital neuralgia and not cluster headaches. I had cluster headaches for most of my life and these are WAY different! I think that your block should help determine if this is in fact the case. Loved my blocks, best thing for headache relief for me, although it didn't relieve all the pain, but the ones that start in the base of my scull are WAY better!
I'm so excited for you and really really hope this works!
Take care,
Liz
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Thanks, Liz. I'm brewing a headache right now and of course it's only on the right side of my head. My daughter and son-in-law and the kids were leaving after a 5 day visit and I suddenly got busy gathering all there things together. Suddenly I had to take two Alleve and sit down with the ice wrap around my neck. They are gone now so it's quiet. Somehow the commotion brings my headaches on when ordinarily I could handle it. Since the AN surgery a little bit of stirring brings on the headache. I don't know how I would have handled working in the high school classroom now. I'd probably be having a continuous all day headache and not be able to teach.
Do you get this way too?
Mei Mei
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Mei Mei,
Yes I do have increased headaches with "movement", but the medication I take (indomethicin, its an NSAID) helps a lot with that. I guess they give it to people who have exercise induced headaches which would explain why it works (somewhat) when I do activities like housework.
Hope you are feeling better now that you have some quiet time.
Liz
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Yes, I am, thanks! I wanted to report that I hadn't had a headache since Monday night which is the longest I've gone since the Jan. surgery. I pulled a muscle above my waist last Sunday and woke up in extreme pain. Must have done something taking care of my father. Well I went to the accupuncturist on Monday afternoon and when I was leaving she prescribed Voltaren 50mg twice a day. I am wondering if Voltaren is preventing my headaches at night this week? I didn't want to post this till two weeks have past but am excited that I am experiencing no night time headaches. The problem is that Voltaren has a lot of precautions that worry me so I don't want to be on it for too long.
Mei Mei
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This is great, any relief is welcomed even if only temporary! ;D ;D ;D ;D ;D
I'm so happy for you! Hope that this trend continues. :)
Liz
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I was first diagnosed with cluster headaches and then later with occipital neuralgia, which, with all I've read about it, I am convinced is my problem. I also believe it was my problem before my AN surgery since I had neck problems coupled with occipital headaches, which went into super overdrive and got worse and worse as I healed from my surgery. I believed my neck was hyper-extended during surgery and the occipital nerves, which emerge from the spinal cord at C2-C3 were stretched and damaged and healed improperly, hence the headaches escalating during the first year post op.
My plan now is for a nerve ablation of the area of C2-C3 if that is where the damage is, or higher up on the nerve--nerve blocks with local anesthetic will give my pain specialist a better idea of where to insert the device that will fry the nerve. It may end up that we actually kill the entire nerve, which will leave me with a numb head, which might be preferrable to triggering a headache anytime I take a walk, do anything that involves looking down like cooking or mixing paint on my pallette.
I plan on letting my Botox wear off so it doesn't interfere with the diagnostic shots. I want a permanent solution to these headaches so I am not tethered to a doctors office every 3 months--I am tired of planning my entire life around doctors appointments! We'll see!
Capt Deb
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I am sure I can speak for us all in that we are tired of doctors and feel sick of carrying a calendar full of appts.
I'm just home from the hospital and found out the pain I woke up with on Monday morning was not a pulled muscle from taking care of my father but two fractured ribs. I just can't take care of him on the weekends and at night anymore. He's too much for me. They gave me i.v. Morphine but the interesting thing is that the morphine took care of the ribs, but not, I repeat not the Occipital area and the neck where the surgery was and where my headaches are. It's all very telling this unintended experiment with the Morphine. It reveals just how much we AN patients suffer with the headache pain!!!!! :'(
Going upstairs now and sleep some with this morphine. Still no answer about my skull and neck. I feel like it's never ending. At least the ribs had a simple solution.
Mei Mei
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Capt,
So excited to hear how your ablation works, I say fry em all! ;D
Mei Mei,
Sorry about your ribs and wish you had some help taking care of your father. I'm thinking about you and hoping you find the relief through those blocks you'll be getting shortly. (you're still getting them right?)
Liz
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Thanks Liz,
Yes, I'm still getting the nerve block in the O.R. Maybe getting it in the O.R., it might work better and I'll be sedated for it this time. Hope it doesn't hurt but read a blog this morning where this woman had the block done in the OR under sedation and it still hurt. Wonder why.
Wonder if I should do the ablation. What kind of doc. does that? Hope Captain does well by them. We're all rooting for you Captain.
Mei Mei
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Mei Mei,
Good to hear you are still going forward with the block. I had them with just some numbing stuff and yes they hurt, but only for a short period. My neck was also sore for about 4 days after, kind of like the feeling when you sleep funny. Well worth the discomfort in the end. Hey if the blocks don't work the ablation could be another route? Rooting for you!
Liz