Neurologist Gives Up

sara, that just shows-ta-go-ya that we all respond so very differently to drugs. when we have awful side effects we become very gun-shy and the docs get mad at us for not wanting to try other things.

i was afraid to try tomomax, but then it turned out to be no problem. except that it did nothing for my head. drat. dianne

Not my neurologist (he gave up long time ago) but my pain management doctor says he doesn't know what else to try. Just wants to revisit what he's done before that didn't work. Isn't that the definition of an idiot - someone who does the same thing over & over expecting different results? Really hate the thought of going in once a month to take a pee test & get my meds for the rest of my life.

i've always heard that definition describing someone who is mentally ill! just what we need; right? a doctor who's an idiot AND a crazy person.

just bein' funny here. really, i am grateful for all the docs who have stood by me, and continued to support me in whatever flaky thing i read about on the internet and bring in for their opinions. they know the desperation, but they also know that treatments without a shred of evidence in the medical literature are not very smart.

both my current primary doctor and my neurologist have gone the extra mile, to advocate for me, to get THE ONLY THINGS THAT WORK; namely 2 brand-name triptans. i would have no life without these drugs. (i hate drugs, and i think most of us do........but thankfully sometimes they do get us through life successfully).

i wish you, sprout, and all the rest of us, the grace of perseverance until we find something that works. dianne

I am waiting for my first appointment at the pain clinic. The docs refused to refer me until I had spoken to the pain clinic myself to get their agreement to see me. I then made sure to speak to a different doctor to get referred. Let's hope that they can help in some way!

So, it was with great anticipation that last week I have my long awaited first appointment with the pain clinic. Unfortunately, it also turned out to be my last appointment with the pain clinic. After getting me to tell him my entire migraine history he suggested that I take a "3rd line" tablet that don't help for most people but are worth a go. Um, isn't that what my neurologist does, offer tablets? So what's the difference between you and him? Apparently nothing. They offer psychological support for people with chronic pain, but as I seem to have my own coping mechanism, there is nothing they can offer to help with. I am at a loss as to what to do next. Currently experiencing 25 days headaches with 1/2 being migs per month.

Kloos,

So sorry you were disappointed in the pain doc.  Unfortunately at present there just aren't any magic silver bullets out there. If you have tried all the meds, to no avail like most of us here, then you are down to alternative therapies ( Chiro, supplements, acupuncture) which you have apparently tried, or the newer treatments like Botox or Cefaly.   Unfortunately, the same things seem to effect everyone differently, so it is a lot of trial and error.

Several of us have done very well with the Cefaly.  I certainly recommend giving it a try.  

Also you really should try keeping a food journal.  I know it seems difficult when you get them so often.  If you really want to get serious about finding triggers, they recommend you start with only a very limited diet and then add foods one at a time to find the culprits.  It can take 6-48 hours for the migraine to hit after eating something, so this is a slow process, but certainly worth doing given the severity of your problem.

https://www.fammed.wisc.edu/sites/default/files/webfm-uploads/documents/outreach/im/handout_ha_elim_diet_patient.pdf

http://www.healthcommunities.com/migraine/elimination-challenge.shtml

Look carefully at what is in what you are eating.  If I had not tracked my diet I never would have realized that nitrates ( in most sausage, ham, bacon, lunch meats) were a major trigger for me , as is lemonade and wine.

Hi Migrainegirl,

Thanks for the suggestions. I did the York Test for food allergies. They stripped quite a lot from my diet and I kept it to the letter. I didn't notice any difference in my life either migs or otherwise. As you say, the problem with a food diary is the high frequency of my migs, so triggers would merge into each other. How can you tell what is and isn't causing them other than by cutting things out one at a time?

I am this close to buying the Cefaly machine (that is quite close btw).

I had issues with panic attacks too, mine took about 2 weeks yo fully hit me, but failing a college level anatomy test in that time also contributed (imagine that, I can't memorize after tougher killed my sorry turn memory). I still have Atavan for the bad days and it's been years since I've had topamax

So sorry, my phone was acting up, and I didn't see the other the pages, within one, I put the exact information I just reposted in.

I think I'm up for buying a cefaly now. The botox appointment was this afternoon...let's say I left the office crying, with NO new meds.

I had inquired about the cost, and had gotten an estimate. I'd then called my insurance, and gotten the maximum charge allowed. The doctor's office never mentioned that, oh, by the way, we can only get vials of 100 units, so you have to pay for 2 full vials of injections. That raised the cost exponentially.

I got to the office, and had some paperwork to fill out. Page three stated that the cost was going to be 4 times as much as we'd budgeted. I stopped signing, and immediately questioned the office staff. After the whole process got me in tears, they managed to call insurance, and get things down to slightly more than a mortgage payment.

This was still a couple hundred more than the maximum we'd budgeted, so we walked out.

If anyone is in the Kansas city metro, and wants don't use these people info, ask away, because I'm frustrated and willing to share my info.