Need better pain management to work.

I am taking both topamax and keppra for preventative which helped a little but even more, I got my hormone levels tested and found out they were all messed up. If I get a full night sleep which is almost impossible due to stress issues at work and home--can't shut my brain off at night even with ambien--I can wake up without a migraine. However, my job requires me to wake up at 4:30am..this is when I almost always have one. As I said I use to take pain relief that worked in 20 minutes..I could almost time it. I used it for 12 years but now doctors don't like prescribing it, says it can cause rebound headaches. I had used fioricet and fioricet with codeine. After yesterday I was considering going in and pushing for this med back. I believe there is a way to regulate the use. However, I am sure now with the new recommendations, I will not be able to get it back. So are we first of all suppose to stay in pain 2 hours longer than is truely necessary and second now I can no longer work because I can't get medication that works for me?  I don't understand. I thought the focus was to keep us functioning, I am definitely having problems with this!! I hope other migrainuers will comment and some of the experts will answer so if there is anything else we can do we will can try it!! Thanks so much for your input and good luck to you as well!!

Yeah, I find that the fioricet did work really well too. They are not going to take that off the market are they? It doesn't have acetaminophen and I thought that i what they were all upset over. Narcortics and acetaminophen together. I take Ultram now and it works pretty well but not as fast. I am going to new doc on Monday-hope she can shed new light. I upped my Topamax and feeling better. I was supposed to do that a month ago but when I did, I felt horrible, so I stayed at current level. Now I have tried and it seems to be ok. I was told you won't get any real relief till you get to 200mg. So, I was at 150 and just recently bumped it up to 175. I can see difference in last couple of days especially with the fragrance thing which is my big trigger. God, to stop smelling stuff all the time is such a blessing!!!!

Good luck to you as well-THese migraines are so horrible!! I am a breast cancer survivor and my ordeal wasn't half as bad as this has been!! I know some people are not going to understand that but it is the truth!!

parisbabe

The "cet" in Fioricet is for acetominophen. 

Some of us are working on a campaign to respond to the FDA's proposed regulations about acetominophen combination medications.  Stay tuned for more, and opportunities to get involved!

- Megan

Let me know if I can get involved!

Lisa

Megan,

   I have tried quite a few of the triptans. All of them take around 2 hours if they are going to work. Right now I am alternating Treximet and Amerge but the time thing on both is a killer since they are both triptans.  I like your idea on switching on and off with a couple of days of triptans and a couple of days of pain-killers. Maybe that will help.  When I worked, it was only 3 days a week so if I could spread them out a bit and use the pain killers just in the mornings. Of course having an employer who doesn't want to discuss accommodations doesn't help. I go back and forth on whether I want to fight it or not.  I truely loved my job and my coworkers. But some days I just get frustrated and feel like there is no support with the doctors, lawyers and the HR department and my head!! Anyway, now I am having a pity party, sorry. But thanks for the information....every bit helps!!!!!!

Teri,

   Thank you for your comments. I do agree with the sleep issue. I don't feel refreshed in the morning at all. I have made a definite effort to make my sleep patterns more regular. I don't think I have ever truely had regular sleep patterns, with having 5 kids and always alternating my body from days for the kids and nightshift for my job (which I did so I could spend more time with my kids). Now with the migraines being so bad I make sure I take my meds at the same time every night, get to bed early enough, do the relaxation techniques etc. It hasn't really worked. I am going to talk with my doctor about this at my next appt.

I guess I kept hoping the preventative meds would stop me from waking up with them. I have been on preventative meds for 14 years now but have had to change them quite a number of times over the past year. I am very open to whatever my doctor wants to try because I just want the pain to stop! I keep a headache diary. In June there were only 8 days when I did NOT have a migraine.

I know there are an infinite number of medications that can be tried for migraines. But even Dr Couch, my specialist says we are getting to the bottom of the barrell. He also said I might have to start accepting the fact that I may not be able to do all the things I use to do. I am having the hardest time with this. My heart says get up go do this go do that you're young, you love this, you've done this a million times, you can make up the sleep later, everyone will be so disappointed if you don't etc. etc. etc., my head says I don't think so...get back in bed. I completely understand the whole research on migraine meds and as I said I have tried anything my doctor has asked me to.

However, when the triptans didn't work one doctor said go to ER because he didn't want to give me any other pain relief. I had tried 3 different triptans over that month for this particular doctor and he didn't care. Not only is there a huge difference in cost for a prescription verses an ER visit but the 4hour waiting time was I think unacceptable after I tried what he wanted me to try and had been in pain for so long especially knowing there is something that does work for me. Could we have not fixed the pain at the time then tried something else the next time? I got a new doc after that day.

I am not asking for straight pain reliever even though I did take them for 14 years without any problems. I think the issue with the research on Migraines is that we in the health field do a common thing....we do a one size fits all approach. Although I totally understand that over the years they have found out more about the process of why migraines happen and the roll of triptans and how medication overuse can actually cause a transformed migraine, none of the research is inclusive. No one can say that 100% of the people who take pain reliever for migraines will have those issues. I am glad that the triptans work to stop the actual process of a migraine and I do get some relief from them depending on the time I can take them and the type of migraine-with or without aura etc. and I always try them first. But I just feel like there should be options.

I don't feel like I have been a difficult patient. I have given each new med 1-3 months to work which was not easy. But after learning what I did about pain in school, in this day and age, there is never an excuse for anybody to stay in pain and I know I speak for a lot of migraineurs when I say that the length of time I stay in pain is rather astounding for the number of different medications that are out there. I'm sorry, I get on a soap box on certain issues. I did the same thing at work when I use to take care on the neonates. I am very passionate about things. Just sharing how I really feel. I am not angry and I hope that does not come across in this post. I am frustrated and will continue to look for answers but it's hard!

Lisa,

You're very welcome. I can tell you from experience that sleep issues are worth looking into. I thought my sleep was fine, but a sleep study proved otherwise. I had two sleep disorders that needed treatment. With them taken care of, it was easier to work on Migraine management.

As for what to do when triptans don't work, I'm a firm believer for rescue medications to be used at home to keep us out of the ER. I certainly can't speak for all Migraine specialists, but many of those I know agree and do prescribe rescue meds. They generally limit how frequently they can be used, but the work with their patients to keep them out of the ER. Something else to be considered and discussed with your doctor is what treatment you receive when you do have to go to the ER. Many ER doctors don't know that a simple IV infusion of magnesium sulfate will often stop a Migraine. If you're someone that works for, it's helpful not only because it stops the Migraine, but also because you're refusing opioids in favor of plain old magnesium sulfate.

You don't sound like a difficult patient to me either, Lisa. One thing I want to say, and it's no reflection on your doctor, is that no doctor -- even a specialist -- is the right doctor for every patient. Sometimes a fresh outlook helps. Have you considered seeing another specialist?

Teri

Hi Teri, What sleep disorders did you have? I worked in Respiratory where we actually ran the sleep study program. I am like you....thought my sleep was fine but don't think so now.  I end up in ER about once or twice a year for an IV and meds. This has always been the case when I have a rescue pain reliever at home. I have wanted to go in more often over the last three months but finances and pain will be weighed against each other. The last three times I did go in have required the IV fluids due to partial dehydration, brought on partially by the wait in the ER, because you can't drink anything before seeing the doctor. They tried mag sulfate and benadryl first but after 40mins they added dilaudid. Each time it has worked great and I get to feel normal for almost a week after. I never ask for a specific drug. Usually by the time I am in ER I am almost not in my right mind....hard to concentrate or understand anything. I let them give me whatever so the pain will go away. On the issue of my doctor, I really had high hopes for him. He is a headache specialist who speaks on the subject all across the country. It took 6 months to get in to see him the first time. He spends a long time with his patients (always late with appointments). However, if I need anything like I am having an odd symptom that might be attributed to a new med, or need a return to work letter etc...many times he is not in the office and won't be for the next week. The questions really can't be answered by an RN or a letter can't be signed by the RN. It just has been hard to adjust....but didn't I want someone who was well respected and knew this field well? One of the problems is when I am there for an appointment I will tell him one thing, he starts asking questions and 15mins later we are going to change something. Meanwhile I forget to finish telling him about the other issues I had. I sometimes feel like I am complaining too much so I don't tell the doctor everything but since I was fired I am going to really have to push him to understand. Another problem, he wanted to see me in 1 month. When the appt person called they made it for 2 months later, I said he wanted to see me in 1 month, they said he was all booked up and after that he didn't have an open appt for 2more months. I may have to see another specialist. It would be odd for me as the other specialist here in oklahoma is in the same group as the one I am seeing now. Anyway, thank you again for reading and responding. You have no idea how much it helps!