[prairiegirl]

Hi Gang, I'm new to this board. Missy B told me about this ON forum.

I was *just* diagnosed with ON. This has been my year for diagnosis-I was diagnosed with MS in December and had that comfirmed in March.

Anyway, about the ON. I have had headaches at the base of my skull for about 6 months now. I had an IVIG treatment in February which gave me aseptic meningitis. I didn't know that was what was causing the crusing headaches for 3 weeks so I suffered till I thought I was going to die before I went to see my neuro about them.

I went on prednisone for it and got better. Except then I had this other headache. I saw my Ms specialist, her partner and a doc in the ER over this. Eventually my ms specialist sent me to a pain specialist who just diagnosed the ON.

She said she feels the best treatment for me would be to have an Ocipital Nerve Stimulator implant.

The problem is this is not readily available in Canada. It's not common and basically to get Gov't approval, she has to build a case for it for me. Add that to the fact that it's a TWO YEAR waiting list to get the implant and well...ARGH!

So...she did another bunch of injections in the back of my head (holy h*ll does it hurt!) and asked me to try a tens machine between now and my next appointment. She said there are no meds that work well on Nerve pain like this but if I get bad again, I should call and they will fit me in. She said it's possible to get a lidocain drip as an outpatient, but I don't really know anything about that.

Anyway, she says the ON is not part of my MS, but I have a hard time believing that. I got the headache hot on the heels of the meningitis I got after I had IVIG. I've never had this kind of headache prior to having the meningitis. THe ON is caused by imflammation of the tissue surrounding the nerves, the muscle crushing the nerves or lesions. Seems to me that sounds just like my MS! (I have all my lesions on my spine and most of them high up-c2-6.)

Anyway, I guess I have to jump through hoops till the gov't antis up. One thing I did ask was if I got the implant, if I could still have MRIs. She said I could-the control box would just have to be shut off, but where it sits, the images in that area would not be as clear as they should be.

I didn't go into more details with her because, as I said, it's a Looooooog way off and so no point worrying about it just yet.

So...this is where I am at. Between this and the MS, it's wearing thin. What are the chances I would be diagnosed with two major things in a year? *sigh* I keep wondering how I got here.

If anyone has the ONS, I would love to hear what your experience has been.

Anyway, that's me!

[diaba]

Hi Prairegirl, just wanted to welcome you to the forum, sounds like you've been going through quite alot lately. I also have MS, was diagnosed 3 years ago. Treatment of diet/supplements for that. My ON started after a injury at work lifting a patient, actually that's not completely correct. I did have burning pain at the back of my head for months after that injury, but the actual burning across the top of the head and gripping headache pain didn't start until the worker's comp. system kept making me do office work which further worsened my condition(I'm not too happy about that). In fact, I'm a PT, and I knew the work was making it worse(they didn't care), the only reason I didn't just quit was because of the MS, I was too afraid to lose my longterm disability insurance.

Anyway, enough about me. Do the nerve blocks help to relieve your pain? I'm still learning about this whole ON thing, but it sounds like it can be caused from many things. The swelling/inflammation of the surrounding muscles which you mentioned. It's also been mentioned to me that the occipital nerves can become stuck to the muscles during the healing process(especially where alot of inflammation is involved). This can cause the nerves to be pulled/irritated every time you move since the nerves can no longer glide properly. And you having upper cervical lesions adds another thing to consider. I think the occipital nerve has a component from C2.

Again, welcome to the forum, keep us posted on how you're doing, and what working for you.

Diana

[kyetzbac]

I can't believe your medical complications in Canada. That really stinks, especially since you are in pain!!!!!!!!! I wouldn't jump too fast to the implant. Try not wearing hats, turtle necks, don't lye flat on your back, don't wear heavy blazers, or sunglasses. I try to keep my neck muscles loosened up all the time. Whenever I get tense or stressed out, it goes straight to my neck!!!! Then my Occipital Nerves get mad and they start to hurt!!!! I go for walks every evening for about an hour. I feel great and my head does not hurt during or after my my walks. But when I sit in a stationery position, like at the computer or watching TV, then my O.N. will kick in and start hurting.
Good luck. GOD Bless you.

[snappy10]

I feel better just reading these posts.... does this sound right.....snappy10

[Bannet]

Hi prairiegirl and welcome to Neuro Talk. Here's a link to the MS forum. Lots of information and lots of support

http://neurotalk.psychcentral.com/forum17.html

[prairiegirl]

Originally Posted by diaba

Anyway, enough about me. Do the nerve blocks help to relieve your pain? I'm still learning about this whole ON thing, but it sounds like it can be caused from many things. The swelling/inflammation of the surrounding muscles which you mentioned. It's also been mentioned to me that the occipital nerves can become stuck to the muscles during the healing process(especially where alot of inflammation is involved). This can cause the nerves to be pulled/irritated every time you move since the nerves can no longer glide properly. And you having upper cervical lesions adds another thing to consider. I think the occipital nerve has a component from C2.

Again, welcome to the forum, keep us posted on how you're doing, and what working for you.

Diana

Yes the block do help. I can usually get about a week with no headache. Right after the shots, my head is reallt painful for 2-3 days (Where the shots went in) and then it settles down. I haven't decided if this trade off is worth it or not, but I guess if we are going to build a case for the implant, then I have to keep doing it.

Thanks for the welcome. I had no idea there were boards for this type of stuff.

[prairiegirl]

Originally Posted by kyetzbac

I can't believe your medical complications in Canada. That really stinks, especially since you are in pain!!!!!!!!! I wouldn't jump too fast to the implant. Try not wearing hats, turtle necks, don't lye flat on your back, don't wear heavy blazers, or sunglasses. I try to keep my neck muscles loosened up all the time. Whenever I get tense or stressed out, it goes straight to my neck!!!! Then my Occipital Nerves get mad and they start to hurt!!!! I go for walks every evening for about an hour. I feel great and my head does not hurt during or after my my walks. But when I sit in a stationery position, like at the computer or watching TV, then my O.N. will kick in and start hurting.
Good luck. GOD Bless you.

I don't do any of that stuff and I see an RMT. It's not anything I am doing, from what I can tell. My ON is 24/7-it never goes away. I've basically had a headache since February. I think it's MS related.

[Sher23114]

I have been diagnosed with ON as of today actually. I spent several days in the hospital last month with the hospital doctor thinking it was trigeminal neuralgia... and treated me with Tegratol. It did stop the pain. Now my neurologist has said.. no no no.. its Occiptal not Trigeminal. I dont know if I should be glad or sad! All I know is that right now I am pain free. I do have some days of tightness/achiness in the upper shouldars.. into the neck and my eyes sometimes feel a bit of an ache but overall things are better. Downside -The tegratol kicks butt. All I wanted to do for three weeks was sleep. Now I am changing my time to take it. I was taking it in the am and pm at breakfast and dinner. Now he wants me to take it before bedtime in hopes that I will feel more awake during the day. Lets hope it works!

[jane d mccartney]

Originally Posted by Sher23114

I have been diagnosed with ON as of today actually. I spent several days in the hospital last month with the hospital doctor thinking it was trigeminal neuralgia... and treated me with Tegratol. It did stop the pain. Now my neurologist has said.. no no no.. its Occiptal not Trigeminal. I dont know if I should be glad or sad! All I know is that right now I am pain free. I do have some days of tightness/achiness in the upper shouldars.. into the neck and my eyes sometimes feel a bit of an ache but overall things are better. Downside -The tegratol kicks butt. All I wanted to do for three weeks was sleep. Now I am changing my time to take it. I was taking it in the am and pm at breakfast and dinner. Now he wants me to take it before bedtime in hopes that I will feel more awake during the day. Lets hope it works!

Hi & welcome to you newbies
not very good for you in canada, you must keep pushing for the treatment.
i have both occipital & trigemenial nuralgias, caused by pressure from brain tumours. I have found the nerve blocks to be helpful just had my 16th today.
i am also on tegretol retard, neuronten, lamortrigne & methadone. felt very drowsy as each one was introduced but am also on these for seizures the reason i have so many.
hope you will gain much info from the site, also many friends.
regards jane u.k

[prairiegirl]

I find having a massage works wonders for all those tight muscles we get from dealing with this day in, day out. I am really lucky as my best friend is an RMT and fits me in whenever there is a hole in her schedule. (for free!!)

Even if you can't afford to go often, getting one every now and again will lift your spirits. If you have a massage school near you, call and see if they have clinics-they are often less expensive and the students still do a very good job.