I went to the neurologist on Thursday with a lot of questions about my health, the increased pain over the last three weeks and what we could do or adjust. Among other questions I'll get to in a minute and are more important.
I'm hypothyroid and it was controlled for many years. When my thyroid goes off, if doesn't go a little bit. My TSH levels (which are supposed to be 4-5 units and you are hypothyroid if it is 20 units) is either normal or 150 - 450 - 450 was at my worst when first diagnosed. It went off - TSH of 250 about the time that I went into a constant migraine mode - actually a few months after. We got it back regulated and was fine 6 months ago and then a few weeks ago it was back worse again with a TSH count of 154. Who knows how long it had been off but cooincides somewhat with my increased pain. Which could also be caused by the weather, my stress, or any number of other things - let down from stress is a big trigger for me.
So, my neurologist, correctly I think, decided with me that we shouldn't make any major changes in my migraine treatment until we can get my thyroid back to normal because the thyroid can be causing my meds to not work effectively and we would have a hard time telling if new meds were working or not.
But, I also talked with my neurologist about what's happening with the FDA and acetamenophen freak out. I have been so stressed and scared about all the talk because I've had trouble in the past with my insurance denying me migraine treatment meds prescribed by doctors which caused untreated migraines and I think led to the constant migraine. Maybe it would have come anyway, but even my docs think that having let migraines go untreated contributed to my current situation.
I now get the meds I need but am worried right now about the FDA and talks about over medication and cutting meds. As migraines causes are so varied and the treatment is so varied and one thing doesn't work for another patient and many meds are off-label use for migraines, I see others thinking of it as a target for saving health care costs and meds and thinking migraineurs over use meds.
I don't over use my meds - I go strictly by doctors orders and don't take any narcotics (mostly because they don't help anyway - except before surgeries I've had when they've given me phentinol (sp?) and it instantly took the migraine away (only relief I've had over the last 18 months) but we tried the patch and that didn't work) so I don't think I should be a target but worry that I am. I take Toradol shots twice a week - I would more often because they are one thing that always lowers my pain level instantly - but it is bad for my liver and I follow the rules. I don't want to be punished for people that over use or abuse medications - a lot of time not their fault even when they are just trying to get out of pain and end up hooked. I feel for them and worry about becoming like that myself which is why I am so strict about following labels and working with my doctors to find non-narcotic treatments for my migraines.
Anyway - I guess I'm never short with these even when I think I'm going to be - I talked this out with my neurologist - my fear that "they" will come after my meds next - especially my toradol since it can hurt your liver. She was wonderful in calming me down. I have to give her a shout out - Dr. Laura Reilly with Dr. Kaplan's office and Jenny Ravenscroft my PA, Thank you all!
She calmed me down telling me that their were many like her in the migraine business that would stand together and not let "them" take away our treatments. That the migraine doctors would stand up for us and fight for us. I've seen my doctors do that in fighting with my insurance company for me and sometimes winning and sometimes losing but I have seen them stand up. Even with my work, they wrote letters explaining my condition to them. I hope that she is right that the many doctors at MHNI - Dr. Saper and his team - that helped me and the others at clinics around the country that help people every day will stand up and not let the FDA take away our meds.
She explained to me what was going on. Rationally - she knows as a CPA that's the best argument to make with me - she stated what was going on and why she agreed to a degree about what was happening. According to her, it's about acetamenophen and the worry of overdoses. She said she always thought extra strength tylenol should have been a prescription because people take more than the label dose. If the bottle says take two - why not take three - that will work better, right. I admit when I was treating migraines over the counter, I did that so a logical, rational argument to me.
So, according to my doctor if you take away the extra strength tylenol people would have to take 15 tylenol a day to just go over the max dosage to the danger area and people are less likely to do that. With the extra-strength - it only takes 5 a day to reach the maximum dosage. Then, still according to my doctor, vicodin and the other narcotics that contain acetamenophen prescribed to patients could even quicker get over the max dosage if they took vicodin plus 4-5 extra strenth tylenols a day. So, she said, there needed to be more control there to help people not accidentally overdose. She said my meds were safe and not on the radar yet and she would be upfront and let me know if she thought anything could be targeted. And again that migraine specialist doctors would rally for their patients.
I know not everyone has a great team of doctors helping them with their migraines like I do and I feel for you all. I have a neurologist and PA that specialize and will never give up on me. They see me once a month and answer all my emails. I have a new sleep doctor who worked with Dr. Saper at MHNI for five years working with migraineurs and their issues. I have an accupuncturist who says it may take a while - 18 - 24 months - to get my body out of what it considers a normal state (pain) and retrain it but won't give up on me. I have a migraine massage therapist who works with my accupuncturist and works with me once a week giving me at least an hour of less pain. (I've had normal massages and deep tissue massages that make the migraine worse even though feels good at the time so I'm lucky to have someone who knows how to do a migraine massage). And I have my therapist who works with me on how to live with the pain and live my life and not just abide, who keeps me from overgeneralizing, and who helps me to remember to stand up for myself. All give me extra tips on essential oils, meditation, yoga, herbs and all the rest and study to keep up to date on my problem and the latest. I know I'm very lucky. I hope everyone in pain finds a team that won't give up on you and really listen to you. I'm still suffering but as long as I have this team behind me I won't give up either and will live my life to the fullest I can and will continue to see the light at the end of the tunnel.
So, I feel better about not losing my meds and will stand up with the doctors to make sure insurance companies, FDA and other government agencies know that we are here and we need relief and we are a valuable part of society if you help us find that relief.
This Too Shall Pass - my neuro even said that to me as her last statement - did I tell her before that this is my mantra passed to me from my grandma or a coincidence?
Take care all,
Elizabeth
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