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New Daily Persistent Headache (NDPH) Online Support Group
A community of patients and friends dedicated to dealing with NDPH and other chronic headache conditions together.
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12/01/2008 19:24
drmeows
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dpapillion,

Thanks for asking about Ryan. He is doing well, just past the 6 weeks post op on Friday. His headache has changed but is not gone. He feels it on the left side only whereas it was always right down the middle. We're told that is a good sign. He seems to be feeling a bit better overall, then again, we just got back from Jamaica.

How are you doing with work and school and your headache?

-drmeows
wife of NDPH sufferer since June 25, 2005
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12/02/2008 16:23
dpapillion
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Im having migraines now which is strange I do not usually get those. I just have ON. I work at the Veterans hospital as a nurse, but Im on sick leave for a couple of months. I ried the cymbalta but it made me really sick. So back to just neurontin. This sickness will eventually pass. Its aforeigner in my body.thats why this sight is great we learn from eachother and can try different options.

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12/23/2008 19:40
drmeows
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Ryan was just at Dr. Blakes this afternoon for his 2 month follow up. She (and us too) was disappointed that he isn't showing signs of improvement as far as the headache goes. His neck pain and tenderness is gone, however, so that's good.

She gave him 2 shots above the eyes in the supratrochlear nerves. So we are back to nerve blocks again, but he hasn't had this one yet so we'll see what it does for him. Immediatly it made his head worse, but I think that would happen to anyone who just got shots in their head. We'll be paying attention over the next few days to see how he responds. He has to go back in 2 weeks for another set of the shots. This is all a precursor to the 2nd nerve decompression surgery which she feels he is a candidate for. Ryan, however, is not willing to get the surgery until he has given his body long enough to respond from the first one. Dr. Perry seemed to think that Ryan was slower to heal due to all the scar tissue he had and he may take longer than the typical 3 months. We're going to wait and see.

Nomorepain and others, how long did it take you to finally feel a dramatic difference after the surgery? I know many have felt better and then worse again and then better. I am hoping he is in the "worse again" phase and will get better from here. He was 2 months post op on the 17th.

dapapillion, are your migraines better?

Everyone who is post-surgery.... how many months are you post surgery and how are you feeling? We need encouragement!

-drmeows
wife of NDPH sufferer since June 25, 2005
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12/23/2008 22:09
BariCanary
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I am so sorry to hear Ryan's news isn't better. My surgery is still scheduled for Feb. 24. Your news doesn't make me feel that confident. But I'm still going to have the surgery--it's the next best option. Frankly, there's no other option right now.

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12/24/2008 07:42
nathansmommy
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I had the surgery on August 20th, its been a slow improvement honestly. Headaches are much less severe overall. I seem to still be getting better!!!!!! I have to be quite careful, to pace myself, to exercise and to do yoga or biofeedback regularly or they will rear there ugly heads again. I hope this Christmas brings relief to Ryan.
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12/24/2008 07:47
jrz30
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Sorry to hear that Ryan isnt good. Does this mean that he has NDPH and not ON?
Jonathan
-I have had NDPH since April 22, 2007
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12/24/2008 08:24
drmeows
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Jrz30, He's always had NDPH, well, since June 25, 2005. ON was a secondary diagnosis and we were hoping it was the cause of the headache. You can have NDPH (24x7 unexplained headache) and ON (nerve pain at the base of the skull and radiating up the head and/or down the neck) at the same time and one can be causing the other.

It's like having a sinus infection and sinus headache. You CAN have both at the same time, and one can cause the other. It doesn't have to be either/or.

BariCanary, Even though we aren't a success story (yet) it was his only option too. He still feels it was worth it, or at least he is still holding out hope that it will be. I wish the best for your surgery. We'll be seeing you soon.

Nathansmommy, Thanks for your experience, I hope Ryan follows your footsteps and starts progressing the right way. I will mention to him about taking up biofeedback again. He hasn't done that for months.

-drmeows
wife of NDPH sufferer since June 25, 2005
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12/26/2008 09:30
dpapillion
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Hi Yall Im sorry I have not written in a while. Thank you for keeping us posted on Ryans condition.We can all continue to learn from each other about ON. Im no doctor(Im a nurse) but I think your right, it has not been long enough to tell yet. Im a slow healer as well and my body takes much longer to heal than others. Even the stimulater I had put in took longer to heal. Which is not a major surgery like nerve decompression.The stimulater started helping. I went to get it adjusted for the 4th time and its fortunate what happened, but also saddens me. The representative that adjusted it put it on a steady flow not a thumping she was able to move some of the stimulus that was causing my jaw pain. After all this she told me she did not know why other reps would set my stimulater so far out of whack. I spent 2 months trying to figure out why it was not helping. I was ready to have it removed. 3 representatives and the doctors said if it was not working yet than it would never work and that the jaw pain never happens to anyone else. Well they were wrong and did not have it adjusted correctly. I prayed at the alter at my church and gave it 1 last shot and the last rep fixed it correctly. Sure i still get some neck pain with the stimulater its not majic but it does definetly help control the neuralgia pain. i turn it on periodically sometimes i forget its on sometimes i forget its off. It is a blessing to have this to help the pain. Again I want to say some of the pain is still there its about a 40% improvement I feel along with taking neurontin 900mg. i still would like to do the decopression in the future. Right now im having a tummy tuck and breast implants replaced in Jan. so im excited about having my pain manageable and a improved figure. I hope everyone had a wonderful christmas lets all have a blessed new Year.

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12/26/2008 11:26
drmeows
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How exciting about your decreased pain from the stimulator! I'm glad this last rep was able to get it right for you. You'll have to let me know how your procedures go in January. I've considered breast implants before but I'm always too afraid to commit to it.
-drmeows
wife of NDPH sufferer since June 25, 2005
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12/26/2008 20:44
MaryR
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I am glad this representative got it fixed where it is helping you now, though it is rather sad that the other three were unable to for so long. That is wonderful that she knew how to stop the jaw pain and everything. I hope that you (and everyone else here too) have a wonderful New Year!
Mary
NDPH support group leader

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