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07/26/2011 11:15 AM

New Member

Aussiedog
 
Posts: 11
New Member

I have developed ON after a serious car accident in May. I have been through physical therapy and deep tissue massage (which I feel makes the pain worse). I was put on Esgic for muscular tension headaches. I am still on Norflex for headaches. I've had migraines for over 18 years and now everything is compounded with the ON pain. It's difficult to sleep because as everyone knows you cannot put your head down like you used to be able to do.

On July 13, my neurologist tried a nerve block. I was so hopeful and when the numbing medication wore off the pain was still present. It is so heart breaking when you want the pain to stop and it's still there every morning and through out the day. Yesterday, I called my neurologists's office hoping that he would try another series of nerve blocks, but it appears I have to wait until October. He was going to prescribe Prednisone and up the Neurontin to three times a day to a much as I could tolerate. The problem is I can't tolerate the Neurontin at 300 mg. I'm beginning to feel like I have rebound headaches from the medication. Has anyone experienced this feeling?

Has anyone tried Prednisone? I refused to go on it due to my glucose intolerance issues and the medication I have to take to keep my blood sugar stabilized. I had put my life on hold until I could get into a new primary care doctor who could treat me for dumping syndrome and now I feel like because of some moron texting my life is on hold yet again for medical reasons. I had been in law school and I had been hoping to enroll for the fall semester, but with this daily pain-there is no way I can handle a full class schedule plus keep a grip on my sanity while trying to keep my job. How do any of you handle this?

I have one or two days a week that I do not have that head pain wake me at 4:00 am, but by 10 or 11 am it is there.

Thanks for letting me get this out and I appreciate the fact there are others who understand this hellish experience.

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07/26/2011 12:55 PM
rjeareby
Posts: 8
New Member

I could not take Neurontin or Lyrica either. I have such sensitivities to alot of drugs. I am takign parafon forte, hydrocodone & celebrex as needed and they work pretty well for me. I did PT, 2 round with 2 different therapists, it made things worse. I tried many different drugs, chiropractic(2 different Dr's) massage, trigger point injections (these helped but I had to keep getting them), nerve blocks, which the first 2 didn't help but with a new pain Dr, the next 2 did. My neurosurgeon said you can get them often as the steroid is alot less. He prescribed botox into my trapezious muscle, which I just got a week ago. I had cervical fusion on 2 levels, was in a car accident and had a consussion when I was younger. The botox has done wonders! It has settled down the trap muscle and lessened the pain in my head. Accupuncture has helped me too, but I have a Dr. that hooks the needles up to stimulation then turns it off but it is still deep into the muscles. I wish you much luck, hope some of this may have helped.

07/26/2011 10:44 PM
cmiller
cmiller  
Posts: 863
Member
I'm an Advocate

Hi Aussiedog,

It sounds like you may live in Australia? I know that the trigeminal association there includes support for any cranial neuralgia. Maybe look for that forum also because of course there is no decompression surgery there yet.

I was so desperate I stayed on neurontin at times having to take 2400 mg per day due to the massive electric shock type pains up to 300 per day with out it. It made me feel like a zombie but it was better than the pain.

I understand that physio can really make the pain worse by stretching the inflamed nerves. I found deep tissue massage helped the surrounding muscles in the neck and shoulders that were tensed by the nerve pain but not too deep.

I haven't heard any success with prednisone plus it is horrid for blood sugar numbers. I would give that a miss. Abortive migraine type medications do not work for ON but maybe you could consider a muscle relaxant to calm the muscles around the inflamed nerves.

So you had to join us but welcome to this small but supportive group

Chloe


07/27/2011 04:49 PM
redrobin1977
 
Posts: 82
Member

I took prednisone to calm for a week to calm my nerves down enough for nerve blocks. Dr. Blake didn't think I could stand the blocks without it. It is not something you can do all the time, though.

07/27/2011 05:51 PM
Aussiedog
 
Posts: 11
New Member

CMiller-I am from the midwest actually-I have a hard time chosing screen names and I own an Australian Shephard, who continually makes me laugh even on really rough days.

I am on my second round of Celebrex. My doctor doesn't really want me on it much longer since I have a history of ulcers. I have tried two different muscle relaxers and apparently the nurologist called in a prescription for Zanaflex, but I have not bothered to get it. I am not sure there is any point.

I hate Neurontin. I have not been able to handle more than 600 mg. and I end up with a rebound headache lasts all day until it progresses into a migraine. My insurance only permits me to have 9 Relpax a month and I have used 8 since last week-and that is with cutting the pills in two.

I have gone through PT with my chiropractor that has been treating my back for years. I tried deep tissue massage and even with a more gentle touch, I would be in severe pain for several days following. I cannot find a comfortable position to hold my head while I am at work. I have a desk job and I work on files while using my computer and the head movement from looking up and down repeatedly through the day.

The neurologist did not mention anything about nerve release-only taking the nerve block to deeper levels and then also injecting them into my neck. I did not get any relief from the first series and I'm not scheduled for a follow up until October. I can't imagine being this sleep deprived for the next three months while waiting for the next phase that most likely won't work. I think it's time to call my primary care doctor and look for another alternative. I've lost my patience and it's only been 11 weeks. I don't know how so many of you have maintained wihtout losing your sanity.


07/28/2011 10:55 AM
cmiller
cmiller  
Posts: 863
Member
I'm an Advocate

Oh the aussie from the dog... I don't know the history of the dog but I do know we don't have them in Australia lol. whoever discovered the breed was probably Australian or something. Australians often giggle watching the westminster shows about this.

From what you have posted something is amiss. Neurontin in no way can cause rebound headaches but what it does do is take at least six weeks to work and neurontin can cause zombie like attributes lol like you had too many vodka for the first few months... I am not sure if you take nsaids but they certainly can ... too much tylenol motrin blah blah blah can cause rebounds. . What you are seeing could just be headaches as part of ON. It sounds like you have neck issues when you say you are having a problem with finding a confortable position for your head and I am not sure if anyone has said but many people with ON can't deal with computer work.

Most neurologist don't know about this nerve release surgery so I am not surprised and most of the rest say it must be voodoo because it's not common. The very first study printed in a medical journal was only this year with the pioneer of the surgery publishing his the first five year study.

I think you will learn a lot if you watch Dr. Ivica Ducic's lecture which is posted in the sticky section in this forum... Click on the forum tab and go to general and support you will see it there. I hope you do this before you choose another neurologist. Ask your primary care doc to call around your area and find out who can treat ON.

My neurolgist told me very early on to go home take as many drugs as he can provide and wait for a cure lol. What a wanker! He did know it was ON though.

We do lose some of our sanity. How can you not. I lay in bed 3 years with mine. Going anywhere in public caused so much pain it was impossible to last more than 15 minutes. Now I am doing so well I am dealing with all the emotional and physical baggage of the ON.

I hope this helps.

oh I need to add... relpax as in any abortive or prevenative migraine medications do not work with ON as it is a neurological disorder causing nerve pain not a migraine. However some people do find they have migraine overlays and in that case relpax may work.

Chloe

Post edited by: cmiller, at: 07/28/2011 10:57 AM


07/30/2011 10:04 AM
Arlet
ArletPosts: 165
Member

Hi, Aussiedog.

First off, I'm very jealous that you have an Aussie! I grew up with two wonderful Aussies and long for another, but the circumstances right now just aren't good for adding a dog to our lives. Please give your dog a big hug from me (maybe post a pic or two??). Sorry, I'm just in love with Aussies and miss mine.

I know that Relpax (and all the other triptans) can cause rebound headaches. I was in a months-long cycle of daily migraines until I finally read an article about triptan rebound headaches. During these months I saw both my PCP and a headache and pain specialist, neither of whom ever mentioned the possibility of rebounds. Over the course of a few years, I had seen several PCPs and pharmacists (I was in college and moved around a lot), and none of them ever said anything about rebounds. I've since been told not to take triptans more than 2 days a week.

I've taken the prednisone 6-day packs twice. The first was just after the occipital nerve blocks, which caused those nerves to go crazy, and I didn't find the prednisone helpful at all. I took a second round not too long ago because my lesser occipital nerves suddenly started going nuts, and I found the steroids very helpful until I saw Dr. Perry and he pressed on all the nerves to examine them. Now they're worse than they've ever been before, and I'm hoping to get another dose pack to calm them down when I see Dr. Blake next week. Does anyone know how often you can take the steroid dose packs?

I hope your next neurologist is able to help you and that you get relief soon!

Best of luck,

Heather

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