I was diagnosed two months ago. When I saw the NS he wanted me to return to NL and try getting relief from the headache with medication. I tried two different meds and had some bad side effects. So, now I am not taking any meds for the headache, except a "migraine vitamin". I feel better without the meds, but I still have the head pressure, mild throbbing most of the time. The NL does not believe my symptoms are from chiari. I have various other symptoms as well. I have an appointment scheduled with NL next week, but I really don't want to go. Seems like a waste of time. Do I really need the NL?
it pays to be monitered by a NL or NS, as things can change,
what meds have you tried?
does the natural stuff your taking help?
joelene
I have tried nortryptyline which caused terrible tachycardia and topamax which caused some visual problems and increased my memory/concentration problems. My head pain is not bad, perhaps the migraine vitamins are helping. But I seem to be sensitive to a lot of meds, and really don't want to try any more if I can manage without. I have been to the NS once. I will see him again in a couple weeks. So I guess I'm wondering if I can just utilize the NS and forget about the NL.
I have been seeing a pain mgmt doctor who has a lot of knowledge about Chiari (more than I could have hoped for). He is treating my headache, neck and back pain as well as trying to help me work through my odd symptoms. I can't tell you how much it helps to have someone who will finally listen. I asked him if I should see a NL and he said there is most likely nothing they can do to help me (which is a statement that has been made by many ppl on this board). I almost cried when he told me he would make me as comfortable as he can (I am pregnant and we are limited to what we can do right now) and then once I am able to have more done WE will figure this out. I have been feeling like no one cared and it is AMAZING to finally find someone who cares and will help.
Good luck. It is a long journey that I am afraid never ends. This group is a huge source of support. You will never be told your questions are stupid or petty. We can't replace a doctor but collectively we have seen so many we could probably teach them a thing or two. =)
i say yes get it taken care of while you are in good health and not bedridden