Chiari Malformation Community
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1435895 tn?1304294841


What are you taking for headaches and does anything work?  I have tried numerous migraine meds, ultram, afraid to take seizure meds,(since I am not having seizures) had an allergic reaction to nortriptylline which did seem to be working.  I feel like I really need to have this pain managed but I dont think anything will work for it.  Any suggestions?  I am just sick of not feeling well and I dont have a high tolerance for pain.  
11 Responses
997898 tn?1303738464
a hot compress always works best for me, along with some caffine.  but if things get really out of hand, the only thing that has ever taken the edge off has been vicodin.  hope that helps.
620923 tn?1452919248
Hi..sorry, I have no real meds that seem to work, but heat works well for me too...so I start with a warm soak or shower, and I curl up in bed with a heating pad.

Neway I can relax helps.....hope it helps u too : )

Avatar universal
If it's intracranial pressure HA. Then a diuretic or glaucoma med might possibly help. There's one commonly used for chiari, but I can't think of the name....diamox? I've never used it because it's derived from Sulfa I guess, and I'm allergic to Sulfa.

I've got hefty narcotic meds available due to my arthritis disease and back problems. They only take the edge off on a bad day. A dark room, no noise, an ice pack on the back of my head and neck; all help a little.  
1063386 tn?1287882169
I am on diamox which really helps the pressure but the rest of the headache is barely managed

They have me on ultram which barely takes the edge off.   I use ice packs and a dark night mask that I keep cool.  I hate cold but it does help I think it takes my mind off the pain.  

Also I have not found anything that helps on the really bad days.   Other than severe lifestyle changes of not doing anything to make it worse and basically laying around way way more than I want to be.

Good luck and I hope you find something to help
1457748 tn?1317578765
I take Panlor for the pain, it does seem to help take the edge off, but like others have mentioned it doesn't do much for the really bad days. My problem is I have so much vertigo I can't stand it so I take meds for that and they are so sedative that it makes me like a Zombie!! At night I take Xanax and in all honesty that is when I feel at my best. It really seems to help me all the way around. I guess because it relaxes me so much that I am able to do just that "RELAX" however I can't take it during the day because it also makes me so sleepy that I can't get anything done. By far it is the most effective for me, but a lot of Dr.s don't like to give it because it is highly addictive, but if it works then to me it's worth the risk. I am very careful about not taking more then I am prescribed. I've tried all the antiseizure meds (Lyrica, Neurontin, etc...) that they try and shove on you at pain management and none of them helped. They all made me feel like I was in a cloud. I have bad brain fog anyway and those meds seem to intensify it.
Goodluck, I really hope you are able to find something that helps. I have heard quit a few people talk about the diamox and that it really helps with the pressure. I am planning on asking my Dr. about it next time I go and see how that works.
1141287 tn?1287500399
Hi!!  If you are having migraines (aside from the chiari headaches) you might try the 'seizure' medication.  I take a daily medication (Keppra - 750mg) once a day (at night) to prevent my migraines.  And I have to be honest, since I started taking it - my migraines went from 5 - 6 a month to maybe 1 or 2!!!  When I  DO get them, I take treximet (very expensive - but amazing) - and it usually knocks out a migraine within about 30 minutes!!  

Taking a 'seizure' medication scared me at first too - but after trying it - I was impressed!!!  

Good luck!
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