No Way Qulipta
So, I have had migraines under control for years (despite exacerbating injuries from a serious car accident and TBI) due to combo of Rizatriptan (broken in half) and Fioricet with codeine back and forth as needed so no dependency. Suddenly due to DEA my neurologist is no longer allowed to prescribe fioricet with codeine. Pain control center doctor dismissed me/ my knowledge and prescribed Qulipta( he had samples). He wanted to give me a shot saying the only side effect was a stuffy nose (I said that could lead to a migraine and no thank you) Difficult to find real information re Qulipta that isn't from drug companies. First, what they characterize as mild symptoms are not mild. Constipation is serious as the gut health brain link is real and constipation triggers migraines. Moreover the long term affects on heart and immune system (really dug deep to find these legitimate studies) are real and alarming. As a migraine person since age 18 with migraines under control for the last eight years I am tired of one) being treated as an addict; two) being a Guinea pig (no thank you!) for drug companies, three) having my knowledge and experience and pain discounted! Does anyone else have this problem with pain control doctors/ gatekeepers?
Hi
This is a great question that has been discuss often here in our community. Fioricet is an older drug many physicians prescribed "back in the day" but is not the best option for migraine disease. One reason is this pain reliever masks symptoms, and doesn't stop the migraine process. Another reason some physicians may hesitate to prescribe Fioricet is that it contains butalbital, is a controlled substance. These compounds (like Fioricet) have also been shown to increase migraine from episodic to chronic in a statistically significant number of cases. This article gives some information about Fioricet that might be of interest to you:
https://migraine.com/migraine-treatment/fioricet
Yet another reason is pain relievers, whether they are over-the-counter or prescription, taken more than two to three days a week increases our risk of rebound headache and that's a cycle no one wants to be in. You can read more about that here; https://migraine.com/headache-types/medication-overuse-rebound.I understand how frustrating it is when medications we thought were working are no longer available to us. Try not to lose hope here are over 100 medications, supplements, devices, complementary therapies and lifestyle modifications that can be used to manage migraine disease and most of us are on a combination of these, I sure am. You can read more about treatment option here; https://migraine.com/blog/migraine-preventives-start.
Migraine is thought to be a neurological disease falling on a spectrum that can impact our entire body. I do wonder if it's time to seek out help from a doctor who is a true expert in treating migraine and headache disease. These doctors are different from general neurologists as they are certified in headache medicine, all neurologists are not. General neurologists may be fine doctors but have a hard time being experts in one area because they treat many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. A true migraine/headache disease doctor treats migraine and headache all day, every day. Here is more information on how these doctors are different and how to find one;
https://migraine.com/blog/really-find-headache-specialist
https://migraine.com/living-migraine/neurologist-vs-specialist
https://migraine.com/living-migraine/change-thoughts-new-care
I know this is a lot of information and I hope you let me know what you think,
Nancy Harris Bonk, Patient Leader/Moderator Migraine.com TeamHi, Thank you for taking the time to reply. I honestly know all you pointed out above; however, I have been not in bed or going to get a shot of Toradol for years now due to taking and switching out rizatriptan and fioricet with codeine as needed for close to a decade now. It works. I don't just function; I live my life and thrive. My neurologist is top-notch, my most knowledgeable and caring doctor ever (I'm 62). I have a very good knowledge of medications and medical research (my former stepfather invented the mathematical model for health policy also showed me how medical statistics and studies especially by drug companies can be made to say whatever is desired). I know my body; I have tried or decided not to try various medications based on migraine forum members' experiences and my own research. For example when a GP prescribed Topiramate, a migraine forum gave me the information (not based on the latest drug company research but on their actual experiences) that led me (along with my researching NIH and JAMA and other such journals ) against trying this drug. Similarly I am adept at reading up on fioricet codeine and have never regretted my decision to take this drug. With this new class of drug being pushed on me now (due to drug companies being sued not due to any sense of actual care re patient pain) I find negative reviews on forums but a scarcity of information that does not come directly from the drug companies; however, I am adept at researching and have found enough information re long term consequences of this drug that concern me far more than does my continued use of fioricet with codeine. I am going to discontinue my presence in this forum as I came here for new information and as it is not helpful for me to be told what I already know and also to be talked down to as though I don't know my body and don't know about possible side effects from a medication I chose to take after research and consultation with my pharmacist. There is currently a gatekeeper mentality and actuality in the pain control clinic business and also a push from drug companies to get people on a new class of drugs with three years testing on lab animals and with short term and long term side effects I am not willing to suffer/ undergo. Thank you and all blessings
Here's your reply. I'm not sure why it was deleted, but appreciate you sharing your thoughts, I hear you.
When responding to comments it's tough to know where people are in their migraine journey. Having said that, not everyone knows pain medications and some acute migraine medications, can increase our risk of being in a horrible rebound cycle, so I start the conversation sharing that information. There are always exceptions to the rules and a small, sub group of people with migraine may need these medications. I was on methadone then oxy for a number of years earlier in my journey. At that point that's what I needed. knowing what I do know, I'm not sure I would do that again.
We don't "push" any medication here, rather share that migraine disease is, in my opinion, best managed with a combination of things. We're all very different when it comes to treating migraine disease. You'll notice my treatment plan does not include CGRP medications, I'm not ready to try those with my other chronic conditions. This is my treatment plan; Botox every three months, a combination of antidepressants and BP medications, and Cefaly (a device) every night for prevention. I use sumatriptan nasal spray and/or Nerivio (a device) to try and stop an attack. I keep a regular sleeping schedule, and try to stay hydrated, both of which can be a migraine attack trigger for me.
I hope this helps clear things up and I'd love to keep the conversation going, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team
I wrote a long and thoughtful reply. I have considerable medical research background. I do not appreciate that it was deleted/ did not post. I do not appreciate this site promoting a new class of drugs with horrible short and long term consequences with most "information" coming from drug companies. I already know all you posted above.
