Feels odd to post, I usually keep to lurking.
 

I don't post much on forums typically, learning what I want to know by keeping to reading others' posts, but I have an odd combination of rarities here that I have yet to see. I'm 22 yrs old with a Chiari I, AVM, and lupus tumidus on top of that, and a 12 year history of severe migraines from the malformations. Every doctor I've seen is confused by that combo of bull**** and, in turn, confuse me... i.e., tell me one malformation is nothing to worry about but the other needs surgery, then the 'second opinion' tells me just the opposite. The lupus tumidus just confuses things further because I cannot tell which one causes which symptoms; all I know is I'm quickly getting worse and tired of shuffling through doctors who don't have the time/patience/empathy to deal with such a difficult mix of sh*ttiness. So, I've come here to get some advice of my own from people who know what they're talking about. If anyone has any advice, tips, red flags, etc., don't hesitate to reply or PM.

Oh, and a note on the migraines... I'm severely allergic to triptans, reaction being going into shock, and I've been through the entire list of anti-depressant, anti-seizure, lower blood pressure, etc. medications. All that worked was Topamax, but after 3 months, that stuff made me so stupid I couldn't stand it any longer. I've tried massage therapy and thrice weekly chiropractor visits. I was told by my last doctor that Nucynta was just about the last leg... and it worked great, but now that I've moved, the neurologists around here are fresh out of medical school with no clue what they're doing and have never heard of that medication, and therefore are scared to prescribe it (or much anything else, for that matter; only Midrin & Fioricet, which sometimes make a dent in the pain, but not much else). Any ideas here?

If you guys have Chiari I or AVM, let me know and I can go into symptoms and whatnot... or lupus tumidus, but with the rarity of the thing, I highly doubt it. The Chiari I and AVM are both 8mm, with the AVM being in the right frontal lobe.

Thanks for reading all that... typed more than was intended, a bit long-winded. Anyway, don't hesitate to reply; anything helps! Thanks...

Hello Veidt!
 

It's great that you've come out of lurk mode! :cool:

I sure am sorry for what you are going thru. I wish I could be of help, but I know others will be along to point you in a direction. There are so many forums here that I know you'd benefit from. You probably know your way around since you've been reading up.

I just wanted to say 'Welcome' :hug:

It's great to have you!

Caring
Rae
:grouphug:

Hello and Welcome
 

Hello Veidt and WELCOME to NeuroTalk!

I'm sorry to hear of your struggles. :(

Here are a couple of forum links that may be of help to you and help you find your way around.

http://neurotalk.psychcentral.com/im...allink_ltr.gif Arnold Chiari Malformation & Syringomyelia
http://neurotalk.psychcentral.com/forum71.html

http://neurotalk.psychcentral.com/im...allink_ltr.gif Autoimmune Diseases
http://neurotalk.psychcentral.com/forum44.html

Please feel free to roam around and join in anywhere.

I look forward to seeing you around the board.
:)
Abbie

Nucynta is a fairly new med. It's a combo med of SSRI and an opiate.

You need to be very careful to take it regularly and you should be withdrawn from it slowly.

I'm not familiar with your disorders, but docs are very cautious about prescribing drugs like this--it is a schedule II drug btw. Depending on the state you live in, special regulations are often required by the doc, and the pharmacy.

Hello & Welcome!!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here, just let us know how we can assist, you will see we are are supportive and relaxing place. Our shoulders are here for support in many ways.

Look's like you are roaming around.Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug: