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Old 02-21-2009, 10:26 AM #11
christydiggs christydiggs is offline
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Originally Posted by weegot5kiz View Post
Hello my name is Frank and I have MS. I never suffered from headaches till the last 6 or 7 yrs now.

My neuro keeps saying these migraines are not related to the MS, yet the spinal lesions he now says can cause severe headaches, any insight on this would be welcomed.

As it is he finally agrees the MS could be the cause, yet at same time wants to send me for this Occipital nerve injection to treat occipital neuralgia, is this the ON's I always hear about? or is this something diff? confused is an understatement,

Each time I get these nasty headaches I also have an MS relapse, so this is what bothers me why stick and poke me if its the MS, even in my cog fog thats a no brainer, or has anyone else gone through the same thing I am going through, and can relate or can shed some light on this for me

It seems to me he is covering both exits just incase, and I'll be honest the thought of this injection does not put a smile on my face, I have had 4 LP and thats pretty much what this amounts to, but in the back of the head, and the steroids have actually helped eased the headaches somewhat this relapse, so I am going to hold off unless it worsens but I would appreciate any info anyone has

again thank you
Hi Frank sorry to hear of your problems. I have O.N due to a car accident I was in 13 years ago, when I was 18, and have had many, many injections. Should the steroids stop working for you please don't be afraid to get the injections because they are not painful, just a tinly needle and a little picnh then it burns a few moments while the medicine goes in but that's it, certainly woth going through toget rid of the head aches. Best of luck with everything!!!!

Christy
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Old 10-07-2010, 05:22 PM #12
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Default MS and migraines - Occipital nerve block

I have been having problems with migraines related to my MS. I also have flare ups associated with the migraines. My neurologist wants me to have the nerve block. From what I've read, they only last short term. Can anyone give me some information on them?
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Old 10-24-2011, 10:13 PM #13
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Confused greater occipital nerve pains

Can anyone please help.

I got diagnosed nearly 3 years ago with GON, i have had no trauma to the head since i was 14 and am now 29 (got hit by a vehicle) my specialist told me i have had this all these years but for some reason pain only started to come out around 4 years ago.
I first started to realise something was wrong when i had a lump come up on the lower part of my neck towards my left ear, it came up the size of a golf ball then would go after and few hours and was very painfull.
I informed my gp but as he never saw it and my neck was not painfull unless the lump was there, there was nothing he could do, i continued to complain about this and even told my ent specialist, eventually they sent me for head scans and all came back clear.
I was reffered to a pain specialist and was diagnosed GON. since my diagnosis i have been on every medication possible, i have GON blocks twice a year (the most the government will allow so i have been told) even though my specialist has said that due to my pains i need at least 3-4 a year to cope, my daily medication is AM carbamazapine 200mg, co-codamol 500's x2(every 4 hours) meptazinol 200mg,ibuprofen 400mg. AFT co codamol again, meptazinol 200mg ibuprofen. PM carbamazapine 400mg co-codamol again, meptazinol 200mg ibuprofen. As well as this i have diazipan 30mg in 10mg doses if and when needed.
This is all just in my daily routine yet nothing can get rid of the pain. i have had 5 GON blocks now the first one did make my pain worse as i was told there was a good chance it would but from injection 2 it has been great and after the injections i have been pain free for a while but then all of a sudden it's back and worse.
all of my pains are on the left side of my head face and neck, the lump still comes up a lot but seem to be fobbed off with swelling.
I have a full time job a a carer in a psychiatric hospital and i can't cope. i have so much time off work due to my pains i don't know what to do.
i am getting to the point where i just can't cope and most certainly can't look after my self when the pains get really bad.
please has any one got any sugestions that may help
thanks sufferer
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Old 10-24-2011, 11:13 PM #14
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Originally Posted by Sandy4762 View Post
I have been having problems with migraines related to my MS. I also have flare ups associated with the migraines. My neurologist wants me to have the nerve block. From what I've read, they only last short term. Can anyone give me some information on them?
they last different amounts of time i have had 5 and each one seems to last that little bit longer. to start with you will be allowed 3-4 within a 12 month period but then it will go to two a year. be mindfull the first one is the worst and does increase your pain as it is tackling all your nerves but it is only for a short period concidering living with the pain on a daily basis. the second you should be pain free for a while and after each injection it will last longer. the procedure is not nice as you will have a local anasthetic so you will be awake throughout, the first few seconds really hurt but then you don't feel the rest of the procedure being done.If your first injection does make the pain worse please continue to injection 2 before making up your mind whether to continue, your specialist should tell you themselves the first one is the worst but then it should start to get better.i really hope i haven't scared you or put you off, i just wish i had some-one to tell me all this at the start and really hope this helps. give it a go.
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Old 06-17-2012, 07:48 PM #15
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Thumbs Up GON Block

Am now awaiting my 10th Gon Block. my pain management specialist has finally arranged them for every 6 months, it's only took 4 years to get there but now with these i am able to live my life and enjoy myself. i still have really bad days where the whole left side of my head, face and neck are so excruciatingly painful but most day's the pain is at a level i can live with.
I would suggest to anyone who suffers with occipital nerve pain to try the GON Block's the first does aggravate the pain but from injection 2 you will start to be able to live. Hope this helps anyone who is suffering too.

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Old 09-29-2012, 12:36 AM #16
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I've had 5 so far, and I feel they're all painful to me. Maybe it's a psychological thing, I don't know.

It does feel absolutely horrible when it wears out, I can't describe that horrible sensation there are no words for it :s
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Old 10-07-2012, 12:05 PM #17
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Default Greater occipital nerve blocks

After 2 nerve blocks, I had my GON ablated approximately two years ago - so far so good. I plan on doing the same for my ON. However, I do not have MS, so I do not know if a nerve can be ablated with MS.
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Old 12-07-2012, 07:58 PM #18
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I've had 5 so far, and I feel they're all painful to me. Maybe it's a psychological thing, I don't know.

It does feel absolutely horrible when it wears out, I can't describe that horrible sensation there are no words for it :s
Hiya emma
i understand how you feel, i am beyond counting how many i have had now.
I think i have had another 4-5 since i last replyed to someone on here.
Each time the injections really hurt.
I have found that it really helps if you arrange work shifts around your procedure.
i now leave work after a night shift and go straighht to the hospital.
by this time i am that tired that the pain levels are a lot lower than they would have been.
keep talking to your Pain management speciallist, tell them exactly how your feeling when the injections wear off. eventually they will listen but you have got to be constantly on at them.
there are medications you can take along with the injections that may help out.
hope this helps.
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Old 12-11-2012, 10:16 PM #19
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I go every three months for injections. I have two different PM docs and one told me the only way to control ON was to get the injections every 3 months. I told the second PM doc what the first one said and he finally started doing it and I'm in better shape than I was previously. Right now I'm not doing too good, but I'm less than a month out from my next round of injections. Get your PM doc to schedule them every 3 months and see how you fare then. I still have the headaches and the pain, it just doesn't seem to get as bad as they previously were. Best of luck to all of us that deal with it.
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Old 12-15-2012, 11:07 PM #20
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Default ON

This may be of merit to ON sufferers.

http://www.ehow.com/facts_6803179_ma...neuralgia.html
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