[pono]

do others here get frequent migraines w/ ON???

I have constant pain--burning, throbbing in neck, back of head that often moves up into temporal areas and turns into a full blown migraine.



as I write the pounding is amping up & signaling what could become migraine.

[Kathi49]

Hi Pono,

Yes! When I was originally diagnosed with ON 8 years ago, the diagnosis quickly changed to "Cervicogenic headaches WITH Variant Migraines." There is an article out there and I would find the link if I had time but it does refer to having "two types of headaches" in regards to ON.

[pono]

Originally Posted by Kathi49

Hi Pono,

Yes! When I was originally diagnosed with ON 8 years ago, the diagnosis quickly changed to "Cervicogenic headaches WITH Variant Migraines." There is an article out there and I would find the link if I had time but it does refer to having "two types of headaches" in regards to ON.

thanks for reply
I've researched Cervicognic Headaches --before and since your post (adding With Variant Migraines)
don't think i've yet found the one you refer to....
but will keep looking ....
for info, understanding and hopefully some viable treatmt, help

Botox has been recommended by my neuro (have talked about in prior posts)
and I'm going to try...again

I'm waiting to see [highly recommened] Headache specialist --end of Feb.

any suggestions on how to get 'most' out of this appt???
my sister who's nurse said don't use med terms or prior DX's --
just describe Sx, how i feel, etc.
it's been so many years, and many DRs , trial & error --usually w/ meds
Last artilce I read said "there is no med for cervicogenic headache"
many other articles, reserch -on ON & Cervico HA -- feel Nerve stimulators most promising --when other treatmts (nerve blocks, surgery, etc ) fail

Headaches/pains can be Maddening; confusing & difficult to DX, and treat; vary from DR to DR
Is ON still relevant for U?? or did the DX: cervicogenital w/ variants replace it??
what has helped U??

sorry if i didn't understand .... i'm also dealing w/ new round of post traumatic headaches/pains/issues from recent accident/concussion,
TBI (traumatic brain injury) & chronic pain goes back 12 yrs to accident when i was hit by car as pedestrian. with more head, neck and other injurys since. Headaches/pain have been constant--varying in severity, manifestation.
Migraines are most deblitating --i've gotten them since child.
but these head pains/problems by whatever name DX are much, more than i know how to deal with
I can't sleep at nite--and barely able to function during day (can't when becomes Migraine)

hope this makes sense and relevant to this forum.

[prairiegirl]

I am in the process of my pain specialist trying to get a trial lead for me for an ONS. She wants me to eventually get an ONS if we can get gov't aproval for funding. If I get either, I will let folks here know what I think of it.

I am sorry you are feeling crappy. Believe me, I KNOW what it's like. I fantisize about taking my head off, placing it on a raft and letting it drift off to sea...*lol* Most days I wish I could!!

[pono]

Originally Posted by prairiegirl

I am in the process of my pain specialist trying to get a trial lead for me for an ONS. She wants me to eventually get an ONS if we can get gov't aproval for funding. If I get either, I will let folks here know what I think of it.

I am sorry you are feeling crappy. Believe me, I KNOW what it's like. I fantisize about taking my head off, placing it on a raft and letting it drift off to sea...*lol* Most days I wish I could!!

sorry you are going thru all this .
sounds like you've got a good DR working for you. Hope she can push it thru system quickly, get your trial and that its successful.
please update


in meantime, is there anything that she recommends or can do?? anything to alleviate, relieve some pain, suffering while you wait for ONS

[prairiegirl]

Since I was diagnosed in August, I have been going weekly for freezing shots in the head, at the base of my skull. It started out she would do it once a month but it wasn't near enough. I only get 5-7 days worth of relief. Now I go weekly.

I am scheduled for a rhyzotomy on the 17th. I am also taking hodromorphine if I have pain and she's put me on magnesium 3x a day, which can help with nerve pain.

So we'll see if this proceedure helps. I am also booked on Jan. 12th for a lidocaine drip. You have to have the first one under close supervision and monitoring. If it goes well, then you can come in when you need one and get the lido IV inserted and go right home. There is a small line that goes into a vein and then the little lido bottle gets taped to your arm. The lido drip takes 10 hours, then you ca just pull it out yourself. This would be way better than getting a shot in the head every week!

Maybe if you get to see the headache specialist you can get properly sorted out? I know it took some time for the docs to get mine diagnosed because I was on some icky MS meds that have headaches as a side effect and at first everyone thought that was the problem. The other thing was that people kept thinking it was a regular migraine and it wasn't. A pain or headache specialist should be able to figure it out. Let's hope so!

[prairiegirl]

Oh and I also meant to suggest that you call your doc's office and ask if they have a cancellation list and could you get on it. I always do this and it really helps get in fast in some cases. It can't hurt to ask. February seems like a long time away.

If you live close and are flexable, let them know you are only a few minutes away and able to come on short notice. They like to know this and it makes it more likely they will call you if someone flakes out on their appointment last minute.

[pono]

Originally Posted by prairiegirl

Oh and I also meant to suggest that you call your doc's office and ask if they have a cancellation list and could you get on it. I always do this and it really helps get in fast in some cases. It can't hurt to ask. February seems like a long time away.

If you live close and are flexable, let them know you are only a few minutes away and able to come on short notice. They like to know this and it makes it more likely they will call you if someone flakes out on their appointment last minute.

thanks...

i am on cancellation list. Feb does seem far away....
do hope this specialist can figure out & offer some viable treatmt

in meantime, trying to understand & deal w/ these pains, problems. in any little (and Bigger) ways....



I"ve been trying Lidoderm patches (helps bit but can't put them in all painful spots esp on head)
I've used compounded topicals that contain Lidocaine along w/ other drugs
and have had Lidocaine added in blocks, other injuections

Lidocaine infusions--
I've heard about --would like to learn more....
would be better than getting shots in head, esp if that doesn't or isn't helping

too bad about the "freezing"...
sounds like what happened w/ blocks -for me duration , relief became less & less... so DR didn't want to continue



thanks for sharing...
hope you'll keep updating
and have success...
take care