October 25, 2010 at 8:22 pm #40348
Welcome to the Fioricet Forum
April 21, 2011 at 6:48 pm #41587
Looks like I’m the only one out there still taking Fioricet! I tried everything available 25 years ago, including preventive meds. Since menopause, my headaches aren’t as severe and the Fioricet usually works, but sometimes I have to take two or three of them in a day.
July 18, 2011 at 8:33 pm #41588
I was also prescribed Floricet by my doctor who is not a neurologist. I noticed that it helped with lesser, tension-type headaches but not full blown migraines. It’s my belief that it is because it has almost the same ingredients as OTC Exedrin (ie. caffeine and tylenol) with the exception of the
Butalbital. So in other words, I felt loopy and caffeinated at the same time. This med didn’t work for me. Hope my post was helpful. 🙂
July 19, 2011 at 3:23 am #41589
Fioricet doesn’t work for me but Fiorinal with codeine is the only thing that I can tolerate that does work for me. I’ve tried and tried and tried and tired what feels like a million other meds from abortive to rescue but the Fiorinal #3 is the only one that I can consistently take that works, that I can tolerate and that still allows me to be somewhat functioning.
August 15, 2011 at 1:32 pm #41590
I take fioricet and find it to work but my doctor says not to take more than like 2 pills in a month or i will get rebound headaches… =/ so i try not to take more than that if i can help it.
February 29, 2012 at 6:45 am #41591
I was prescribed fioricet and I never noticed a difference except like one user said, feeling dopey but caffeinated. I have found Inderal to help control my migraines and when I do have a break through migraine percocet 5mg normally help. I hope this is helpful.
March 1, 2012 at 4:14 pm #41592
Butalbital compounds (Fioricet, Fiorinal, Esgic, for example) have never been shown to help any headache in any scientific studies and cause more problems than they should. They are not recommended by most headache specialists.
And they are still commonly prescribed so no you are not alone.
April 5, 2015 at 10:42 pm #62121
hmmm well they work no matter what the studies say. I have suffered from migraines since I was young girl and hormonal time of the month WOW did I suffer (of course no help from doctors). I only ever took Tylenol and/or migraine w/excederin until my mid 30’s I suffered a ruptured brain aneurysm. now I suffer daily combination of cluster, tension and down and out migraines w/numbness and aura @ hormonal time of the month and ONLY fioricet w/codeine works. also, Dr Whyte, after reading your comments below about rebound, etc. etc. I think you should be more specific. I have read and read for years, talked to docs and nobody has the answers. for ME, I cant take NSAIDS as I take aspirin for blood thinner. narcotics are not the only drug causing rebound, so do nsaids Tylenol immitrex on and on, so I find your comments misleading. not to mention, my awesome surgeon has advised that ONLY those who have migraine syndrome will get rebound headaches meaning they truly do suffer even if some stigmatize their pain as not real. priorto taking the fioricet w/codeine, I took soooo many Tylenol i’m surprised my liver still functioned so I decided to take the narcotic as prescribed and it has been a lifesaver. sure I still struggle but w/out them i would never leave my couch and quite frankly it’s a choice of living or not, at least for me. rebound/addiction is scary but a migraine is even scarier sooo… you should read the article written by a doc @ Jefferson hospital about migraine sufferers being more stigmatized than those suffering from mental illness. sad, as I waited for the helicopter to take me to top hospital for surgery, I felt vindicated when I had a brain aneurysm rupture like now everyone will believe my pain.
March 2, 2012 at 3:42 am #41593
I was also prescribed Fioricet by my doctor, but not my neurologist. I have been taking them now for a few years,not daily, but 2-3 times a week in the last 4-5 months when my headaches are very bad. My neurologist gave me Lortab but I don’t like how that makes me feel and I don’t want to take it while i’m working during the day. I have found that nothing much works lately. I have been having headaches daily. My doctor didn’t mention rebound headaches, but after reading info on this site, I’m beginning to think that may be what I am having.
March 13, 2012 at 11:21 pm #41594
I have intercystial cystitis and Recently started having severe migraines again. My neurologist recommended my urologist take me off elmiron because he feels its part of the problem but they said its not a medication I can stop. That being said I went in to my medical doctor this morning and she prescribed Fioricet. When my neuro doctor finally called me back this afternoon and I told him what she prescribed he told me NOT to take it and if I choose to he will no longer treat me. So now I’m back to square ! and feel like i basically have a choice live with the migraines or stop the elmiron and live with the pain of my IC. What do u do?
March 14, 2012 at 3:35 am #41595
shaneandnikkiredding – Don’t give up yet! It is likely that a reason your doctor doesn’t want you taking Fioricet is because of the very real chance you could end up with MOH (medication overuse headache). Once you get in MOH you are in a really super tough spot. Patients in MOH are often noncompliant with treatment and continue to get worse and worse with time. The doctor may want to help, but without a compliant patient they are left basically helpless to help you. This is very frustrating for the doctor and they tend to feel like hamsters running on a wheel in a cage.
I know how vitally important the Elmiron is to your IC. I am first of all glad that it is helping. I can’t help but wonder though, has your doctor ever given you bladder infusions to help with the IC and its associated pain? As bad as it sounds, I know a couple women who have had it done routinely with excellent results. Should something like that be effective, you may not have to take the Elmiron anymore.
There are many preventives that your doctor could try with you. Have you been on any in the past?
Have you ever tried a triptan or DHE?
April 14, 2012 at 8:20 pm #41596
I am on Fioricet (w/out codeine), and have found that while it does not help the pain itself…it does allow me to sleep when I am otherwise unable to do so because of the pain. The pain is masked just enough…I do try to be cautious when using Fioricet, but have found that not only does it help me at night sleep with severe migraine pain, but if I am also having issues with my fibromyalgia and cannot sleep, I am able to find sweet relief in sleep after taking a Fioricet. It is far from being my first line of defense…but when nothing else is working, and I am despirate for sleep…well…
April 26, 2012 at 5:16 pm #41597
I must be in the minority. I was first prescirbed fioricet 4 yrs ago and it was the only thing I had tried to date that helped with my migraines. I had to quit taking it 2 yrs ago due to insurance no longer covering it but was recently put back on it due the fact that all of the other meds I had tried in that time either didnt help at all or had very little effect on my full blown migraines. I am also on Amerge which I find does help if I take it early enough. The problem there is I get 9 pills per month. You have to take the Amerge early on in the migraine and it is sometimes hard to tell what is the start of a migraine or just a really bad headache. If I dont take the Amerge ealry enough it is nice to know that I have something to use as a backup if I need it. I dont find that fioricet makes me sleepy or unable to function. And as the mother of 4 that is a HUGE thing with me.
April 27, 2012 at 4:46 pm #41598
One way some of us can tell the difference between a Migraine and a headache is to hold on to something and bend over. If bending over makes it worse, it’s most likely a Migraine. They’re exacerbated by physical activity.
Sometimes, insurance companies will approve more doses of your triptan is your doctor sends them a litter and gets the prescription preapproved. Have you checked into that?
April 28, 2012 at 9:18 pm #41599
Actually, it seems that though people may have migraine and tension type, the tension type is probably part of the migraine spectrum and it may be hard to tell what the difference is. I tell my migraine patients to use migraine meds like Amerge even for a mild headache. But of course with good preventatives, etc one shouldn’t be worried about 9 per month limit. Again, I think butalbital compounds like Fioricet should be pulled from the market.
July 11, 2012 at 1:52 pm #41600
I have recently been taking Phrenilin, which I believe is Acetaminophen and Butalbital- no caffeine like Fioricet. So far it’s working pretty well with few side-effects. I’ve taken it about once a week for the past four weeks.
July 12, 2012 at 4:20 pm #41601
I take Fioricet with codeine and I find that it relieves the otherwise excruciating pain. To avoid MOH I only use it as a last resort medication. Which means I am at the point where nothing could be worse so it is worth the any risks.
July 25, 2012 at 3:36 am #41602
I was prescribed Fioricet with and without codeine by my pcp. Over time, I was getting more and more migraines, eventually getting migraines every day. I ended up having to go to a Headache Specialist who advised that my increasing use of Fioricet was indeed causing medication overuse headaches. I had to go through a very long and painful 4 month period during which the only pain medication I could take for my daily migraines was Amerg no more than twice weekly. It was a difficult period, but I got through it and I learned my lesson. I destroyed my remaining Fioricet. I still take pain mediation only 2 and occasionally 3 days a week. I don’t ever want to experience medication overuse headaches again.
July 26, 2012 at 2:57 pm #41603
ACHINGHEAD – I am SO terribly sorry you experienced this. I still cannot comprehend why physicians don’t educate their patients about MOH. This is one reason however, why as advocates, we try to really harp on patients to educate themselves about their conditions and their medications. Doctors do not tell us everything we need to know. We can’t depend on them for that. That part must be our responsibility as patients.
February 27, 2013 at 5:18 pm #41605
I have had migraines for over thirthy years. Have had every test imaginable and the only meds I now take is Fioricet, it is the only thing that lessens the attack and don’t know what I would do without it. Caution: Fiorinal actually gave me a bleeding ulcer!!
February 28, 2013 at 1:41 am #41606
med1311 – I am glad that you have one thing that seems to help you. However, your bleeding ulcer comment did concern me just a little.
How often do you take your Fioricet?
August 9, 2013 at 11:26 pm #44434
Besides MOH, why does everyone feel that Fioricet is so harmful? Please educate me as I have to take it a few times a week due to chronic migraines. Nothing else has worked for me. I have chronic migraines and due to being sensitive to many drugs my neurologist stated that there wasn’t anything else I could take. I’ve tried many different medications. And just to clarify, my neurologist did ask me to back off of Fioricet due to MOH but she also agreed that I didn’t have many other options. I would just like to know if there are any other reasons that Fioricet should not be taken.
August 10, 2013 at 7:48 pm #44439
I am in a similar situation regarding meds, but unfortunately fioricet does not work for me anymore(never was that great). So I have stopped taking it unless I am desperate and feel like if I don’t at least try something I won’t make it. (In other words, it more that I need to do something psychologically even if it doesn’t work). The biggest issue with fioricet other than MOH is that it just covers up the symptoms of a migraine, doesn’t make it go away. I have found that when I do that, whether with fioricet or some other pain reliever, the headache comes back as soon as the meds wear off more often than not. Also, I have read of several people who have become addicted addicted to or dependant on fioricet, so it has those risks like any other pain med.
August 11, 2013 at 12:10 pm #44450
Fioricet and other pain medications like it simply mask migraine pain – they do not abort it. Stopping the migraine process is tops on the list of a good migraine treatment plan, covering up migraine pain is not.
Now having said that fioricet and other pain medications can be used sparingly (no more than two to three times a week due to increased moh risk) as a rescue medication when our abortives fail.
The first line of treatment in migraine plan is prevention. The general rule of thumb is that if we have three or more severe migraine attacks a month we need to discuss migraine prevention medication with our doctor.
When we get an attack we use abortives such as the triptans (Imitrex, Maxalt and so on) or ergotamines like Migranal Nasal spray.
If the abortives fail, then we use rescue medications like fioricet or others.
Do you take a migraine preventive medication? Let me share some information with you on the 7 Essentials of Migraine Management if you haven’t seen it yet. It is very helpful; https://migraine.com/blog/migraine-management-essentials/.
Let me know what you think,
August 11, 2013 at 12:15 pm #44453
You got it Merrie!
August 13, 2013 at 4:20 am #44503
After years with neurologists that specialize in treating migraine I have fully embraced the concept of rebound from overuse of abortive medications. I don’t know how many people keep a migraine diary, but I do. In fact, I have built a spreadsheet in which I track not only my migraines but also, among other things, the abortive medications I take. I have, in this spreadsheet, built in a some simple formulas that color code cells to let me know when I am approaching rebound territory. This visual cue helps me manage the balancing act of treating with abortives versus settling in to let the migraine run its course. With migraine as frequent as I have them there really is very little option other than letting some of these go untreated.
I would also say that, beyond rebound, it is a good idea to be very mindful and thoughtful about what you put into your body to treat the migraine. I know for me there was a time when I would simply grab some (or a handful) pills in an attempt to stop the pain. It can be dangerous to mindlessly take pills. Thinking about rebound, tracking my abortive use in a spreadsheet or simply being mindful, these are some helpful techniques in this ongoing war against (chronic) migraine.
August 13, 2013 at 2:30 pm #44526
Butalbital didn’t work for me either. If it works for some people, Hurray! Anything to kill the throbbing brain-eating pain in the head.
August 13, 2013 at 2:35 pm #44528
Brain-eating pain… that’s where I am living today!!!!!!
August 14, 2013 at 4:17 pm #44550
Chris, congratulations on your uber management skills.
We also did the spreadsheet thing, complete with color coding. Added in triggers like weather/pressure levels etc. Ended up abandoning it as with time we got very good at managing without having to deal with sitting at the computer 10 times a day to enter things. There is a point at which journaling etc can get intrusive. If it’s helping you, at the very least it is also telling your doctor that you are serious about getting these things under control. At the worst it can make him/her think you’re obsessively compulsive about your Migraines, and even hysterically afraid of them. I’ve seen it go both ways, and there’s never a really good way to figure out which doc is going to react which way.
Keeping track of how you’re taking your meds is vitally important though. We don’t have a lot of control over our Migraines, but this is one part where we DO have some control!
August 28, 2013 at 12:52 pm #44825
No YOU ARE NOT THE ONLY ONE TAKING FIORICET, SOME DAYS I HAVE TO TAKE 6, ON THE DAYS OF 6 PILLS I HAVE TO TAKE 2 AT A TIME. IT WORKS MOST OF THE TIME BUT I ALSO HAVE TO USE A TENS UNIT.HERE OF LATE I CAN’T GET RID OF MR. MIGRAINE. I JUST WISH HE WOULD TAKE A VACATION.
August 28, 2013 at 8:08 pm #44839
It’s unfortunate, but Fioricet is still being prescribed for migraines. The problem is taking migraine abortive medications and/or pain relievers (like Fioricet) whether they are over-the-counter or by prescription, more than two to three days a week, can increase our risk of a condition called medication overuse headache, or moh formerly called rebound. If we have moh, we will continue to have unending daily head pain in a cycle that won’t end. And it makes our migraine attacks more difficult to treat. Please take a look at this information on moh to see how to end this vicious cycle; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.
August 29, 2013 at 11:25 am #44869
Thanks for your answer on Fioricet. I have always been afraid of taking to many of these along with other meds I have had to take or try to help with my migraines. After two days of having back to back BAD mirgaines and using my TENS unit instead of taking more pills I ended up taking sumatriptan 100mg. At bed time. I don’t like taking these pills but I was beyond my point of pain. It takes a lot of pain for me to take them. I try everything like working outside, reading or doing something I really like to do
. Taking special care of my therapy dog who will not leave my side during these days. I will talk to my neurologist when I go in for my Botox injections about over use of the Fioricet. Thanks for the Heads Up on the use of the meds. P.S. I live a stressed life as a care giver for my husband. I feel sometimes this trigers my migraines along with the weather. But I keep on smilling.
May 25, 2014 at 10:57 am #51205
The thing about Fioricet, for me, is that it makes my migraine days less miserable. Not just becuase it relieves some of the muscle and joint pain, but because it makes me feel more positive and perky and energetic despite bottomed out serotonin levels. I suppose some would judge me for enjoying the little bit of euphoria that comes from the barbituates. But my god, I’ve suffered from chronic migraines, and the negative mental state that comes with them, for almost 30 years. I don’t drink or smoke pot or do any other drugs (except for Imitrex). And I only take Fioricet during my 1-2 weeks of pms/menstruation/postms hell. I’m a mom of 2 kids and own my own business and sometimes I just HAVE to function, despite the stupid migraines, muscle/joint pain and fatigue. Fioricet helps me stay (temporarily) functional.
I had migraines for over 20 years before I was prescribed Fioricet (about 8 years ago). And I occasionally go months without it to give my liver a break and reboot my system. I also like to try new, healthy things to eradicate my migraines, like avoid gluten and dairy or take magnesium or whatever (I never give up hope of curing this awful disease!). My pattern of head and muscle aches and fatigue are exactly the same with or without Fioricet – I just don’t have that little 4 hour boost to get some things done. I recently had a new nurse at my doctor’s office give me a lecture about refilling my Fioricet every couple months (40 pills). She told me about new studies that had come out about the dependency risks and rebound headache potential. I said I’ve never had these problems, but is there something they could replace it with? She recommended I take ibuprofen instead. Seriously. I have an ulcer from all the ibuprofen I’ve taken over the years, despite the fact that it barely does anything. I don’t have a drug problem. I have a chronic migraine problem.
I’m not trying to diminish the issues some people have had with this drug. It’s really not one to trifle with. The benefits outweigh the risks for me personally, though. And until something better comes along, I don’t think it should be withheld from responsible migraine sufferers.
June 12, 2014 at 5:14 pm #52138
Carladul & Neugrey –
I also found immediate & total relief with Fioricet. As for my test for the ‘real migraine’: two aspirins with a cup of coffee, the move around (bend over, walk, hop, etc) & smell test (open containers in the fridge) & get into bright light & try to read – all for about 30 minutes before I take the Fioricet. I am taking a 50 mg Topamax at night & am supposed to add a 2nd pill next week to try to minimize use of Fioricet. I am so elated to have some life control back I can hardly stand it. A month ago I was having 2 -3 day migraines 4 – 8 times a month. When they started I would try to think of everything I had planned for the next 3 days & quickly prioritize what I could do before I was bedridden & projectile vomiting.
July 21, 2014 at 10:27 pm #53133
When it comes to treating chronic migraine, my first preference would be for my preventatives to work (currently, Amitriptyline and Botox). But since so far they aren’t helping all that much, my second preference is triptans (Maxalt and Relpax). My problem, however, is that the triptans make me a bit fuzzy. If it’s a work day, I try to work from home if possible so I can take the Maxalt. But if I have to come into the office and look alert, I need an alternative.
That’s where the fioricet comes in. It doesn’t work as well as the triptans, but it can take the edge off and enable me to suck it up and fake being okay for whatever essential meeting dragged me into the office. My neurologist was reluctant to prescribe it, but we had a heart to heart chat about MOH, and I promised to try my best to keep my fioricet/triptan intake to as close to 3 days a week as I could. As a result, I take fioricet at most once a week, and keep the triptans down to 3 days out of 7. No-drug days really suck, but I’ve had rebound headaches before, and they are truly awful.
I think the main downside of my approach is that I’m hesitant to use my abortive drugs at the onset of a migraine, because I don’t want to waste a drug day if the migraine won’t be that bad. Thus the triptans are never quite as effective as they could be. Haven’t figured that one out yet.
July 22, 2014 at 10:58 pm #53153
Has your neurologist tried DHE and other formulations of NSAIDS?
July 23, 2014 at 3:06 pm #53182
Haven’t tried DHE. A few years ago, I went a little overboard on Excedrin and my stomach revolted (severe bouts of acute gastritis) so my gut doctor said no more NSAIDs. That’s when I started on fioricet.
July 24, 2014 at 5:46 pm #53230
Technically you are in medication overuse with triptans more than 10 days a week as what you described above. Fioricet can contribute at 5 days a month
July 25, 2014 at 1:52 pm #53234
I meant ten days a month above
August 9, 2014 at 4:14 pm #54403
I am so thankful for the insights of everyone here. I feel blanket statements such as the Dr saying “Fioricet should be pulled from the market” is typical of Drs who do not see the patient as an individual.
I have had migraines since the 1960s. Through the decades I have been a compliant (guinea pig) patient to 7 neurologists and countless Physicians. (Including Dr J Saper and team).
None of them, or the “next new thing” meds, ever helped, and most treatments I had severe negative reactions to.
At 35-40 years old, my migraines became chronic and complicated. Still compliant and miserable.
Then, when given (get ready to fall off your seats) a daily combination of Fioricet and Cafergot, I have a life! I feel alive, I feel as if I am in control and I am not on my couch or bathroom floor every day.
Why is my quality of life at risk of being pulled out from under me, because of MOH? Take away these meds, and I am violently ill, in severe pain and incapable of living an enjoyable active life.
I just do not understand. We found what does work for me. I have not been to an ER in a decade and I don’t need MORE or run out. 3 Fioricet each day and 1/2 cafergot suppository. When not on these, I go right back to chronic daily HA/migraine.
Aren’t some uses unique?
August 9, 2014 at 4:53 pm #54404
When I was off from (and before I was taking) the Fioricet/Cafergot daily combo, I had 30 days of chronic Intractable Migraine per month.
With all of the severe complications to treatments tried, and with other medical dxs, is MOH really a problem for me? Because I am being helped and my quality of life is improved (greatly) while on the meds, and when off I was always severely sick.
I am in my 50s and don’t have any energy for going back to being a guinea pig again. I was near-suicidal when dealing with all of those side effects and no relief from the migraines.
August 30, 2014 at 10:46 pm #55047
The discussion about Fioricet is very interesting, but also confusing. I had to stop taking triptans recently due to a cardiac issue and my family practice dr. prescribed fioricet. If I have been taking 1 – 2 a day for about a week is there a danger of seizures/withdrawal if I stop “cold turkey” once this cycle of migraines stops?
August 30, 2014 at 11:03 pm #55049
Also, has anyone here had supraventricular tachycardia and a cardiac ablation? I doubt if it’s related to migraines but who knows, maybe there is some connection. thanks~ and hope everyone is having a migraine-free/pain-free night
September 1, 2014 at 8:44 pm #55066
I just found a small study from 2014 that shows after a cardia ablation, patients with existing Migraines, showed less occurrences of Migraines after the procedure.
September 1, 2014 at 8:50 pm #55067
wow, thanks so much for finding and posting this. It’s very interesting. Now I’m wondering if the slight reduction in migraines i’ve had is from the ablation or from going off the triptans, which might have been causing rebounds. Thanks again! Amy
September 2, 2014 at 1:45 pm #55092
“I feel blanket statements such as the Dr saying ‘Fioricet should be pulled from the market’ is typical of Drs who do not see the patient as an individual.”
—–I’m going to disagree with this statement as I say this all the time and I treat all my patients as individuals.
“I just do not understand. We found what does work for me. I have not been to an ER in a decade and I don’t need MORE or run out. 3 Fioricet each day and 1/2 cafergot suppository. When not on these, I go right back to chronic daily HA/migraine.
Aren’t some uses unique?”
—–Yes, some cases are unique but in the majority there is a problem with MOH, especially Fioricet. Recent studies have shown that the changes that occur in the brain seen on functional MRIs in MOH patients can take MONTHS to clear. I find that it can be WEEKS to clear MOH, especially with being on Fioricet for years. Clinically, it could take a long time for MOH to clear. It’s getting through the withdrawal phase that can drive patients (and myself) insane as often treatments will not work. The problem would be if headaches increase AND/OR your Fioricet intake increases. That means it’s not working. I’m not saying what Dr. Saper is doing wrong as there are unique cases in some individuals; I just chose the path of no butalbital mixtures. That’s how I was trained
September 2, 2014 at 9:45 pm #55111
Mary Butler GroomParticipant
I was recently at Mayo Clinic in MN. I was told to stop the Fioricet as it cause Medication Overuse and rebound headaches.
September 3, 2014 at 8:51 pm #55168
To Mary Butler Groom –
What are you currently using in place of Fioricet and is it working as well, better, or not as well?
I hope you are a lot better after your visit to Mayo!
November 14, 2014 at 3:36 pm #57427
I am SO SO SO glad I found this forum on Fioricet. I have been suffering from chronic, daily migraines for 4 months due to Depo-Provera injections. My neurologist put me on Depakote, 125mg (3x daily); Fioricet w/Codeine (2 pills every 4 hours as needed for migraine); Imitrex 100mg (1 pill at the beginning of a migraine or if my Fioricet doesn’t work). I also take Promethazine, 12.5mg (1-2 pills every 6 hours for nausea during my migraines).
I have to say.. the Fioricet w/Codeine has been a god send and my neurologist said I would more then likely get withdraw headaches or rebound headaches once I stop when the Depo runs out my system in about 2 months. I have been taking Fioricet w/Codeine for about a month now. I usually take 2 a day because my migraines happen daily.
I saw a handful of people had great success taking Fioricet w/Codeine. Are the rebound headaches tolerable or is there another medication someone with daily migraines could suggest? I understand not having medical training, etc. But this is solely to get a better perspective on the treatments that are out there and to see how Fioricet w/Codeine has worked for others.
Thanks for reading!
April 29, 2016 at 2:15 pm #74674
I have been taking fiorinal with codeine for about 3 years. I’ve tried every abortive and preventative under the sun, and the fiorinal is the only thing that works for me. It gets rid of the pain, makes me functional, and prevents the 24 hour cyclic vomiting. I am very careful about my usage of it and only use it if absolutely necessary. I was originally prescribed it by my first neurologist and then my pcp. I went to see a new neurologist because my headaches have become worse, and he pushed Botox on me and said he would not prescribe me the fiorinal anymore unless it was for “short periods of time.” He told me no headache specialist would prescribe fiorinal with codeine to me which I know is not true. I also went to see my pcp because I didn’t like the neurologist and how he didn’t listen to me. She also refused to prescribe me fiorinal with codeine (after doing so for 1.5 years) and said we should try abortives I’ve already tried and failed with again. I am at a loss for what to do and am having major anxiety about how to deal with an attack a. while I’m waiting for the Botox to be approved and b. if I get an attack while I am being treated with the Botox.
I understand the “dangers” of this type of drug but it truly is the only thing that has helped my chronic migraines after 20+ years of searching. Without it, I’m completely unable to function as I am bedridden – sometimes for days.
April 29, 2016 at 2:59 pm #74680
I can imagine how frustrating this is. My headache specialists allows me to use percocet in small doses and it really helps me to be more functional. However it is not my first go-to abortive.
Besides worrying about addiction, doctors are also concerned that using it too often can cause medication overuse headache. Both of these make doctors skittish to prescribe these types of drugs.
You mentioned that you’ve tried a lot of abortives and failed. Were they all Triptans like Maxalt, Imitrex, Treximet, etc? Have you ever tried DHE? Triptans stopped working for me and DHE has been helpful. It is available in a shot form or as a nasal spray. Here’s some basic info on it. It’s a very old school medicine that’s being used more and more.
April 29, 2016 at 3:22 pm #74683
I have tried DHE in the form of the nasal spray. It is some help and sometimes prevents me from having to use the fiorinal. However sometimes it works for an hour and the migraine comes back. I’ve also reassured my doctor that I don’t use fiorinal as a first solution and I am cognizant of how many days a month I do use it.
April 29, 2016 at 3:54 pm #74698
It is good to hear back from you. I am very sorry about your current situation and completely understand how anxious you must feel. You have found something that worked well for you and now you are unable to get it. That is very stressful! At the same time, you have to believe that your doctors are looking out for your best interest. I know sometimes it can feel like you have tried EVERYTHING. I have felt that way many times. But there are hundreds of treatments out there and more coming out each year.
Personally, I have found Cambia to be an extremely effective abortive- I am unsure if you have tried that.
When I am in too deep & cambia does not work I used nabumetone. As a last resort I will use a steroid which generally breaks a bad cycle.
If you haven’t already, express your concerns to your doctors about what to do if you experience an attack while waiting or during botox. If you find you are left empty handed, it might be worth getting another opinion.
In the meantime, I wanted to share an article that I think you might be able to relate to:
Here is another article regarding migraine research which I hope makes you feel a bit more hopeful: https://migraine.com/blog/finding-hope-in-migraine-research/
Jillian (Migraine.com Team)
May 6, 2016 at 3:08 pm #75025
I am currently receiving Botox injections every 2 months bc they did not last 12 weeks for me. I was surprised to find that they were supposed to. Mine were so chronic that I felt as though I went for days without being able to hold my head up. The botox has brought the severity of my migraines down to a manageable level, however, I still have more migraine days than not. My PCP will now only prescribe Fioricet and vicuprofen for my migraines and not that many. Oddly, the very same PCP will give my mother 180 Fiorinal w codeine for 3mo at a time. She is in her 70s and does not have nearly the severity of migraines that I do. I am still willing to do whatever it takes to lessen these migraines. I have a 16yo and I feel that I have let her down over the last three years or so as my headaches have worsened. At least now I can drop her off and pick her up from school, something that I had to rely on other moms to do at my worst. I find that Fioricet will take the edge off, but never stops a migraine. It is still lurking there waiting for 4 hours to end. I was recently prescribed Zecuity to use when the menstrual migraines still confine me to bed. You get 4 patches for the month but can only use 2 for the same migraine. I’m apprehensive abt using it but I did have some success w Imitrex years ago. I just do not like to take drugs w/o knowing how I will react when I have to be somewhere or drive. Sorry, I’m rambling, but I have had a migraine for 3 days and am just frustrated that the best I can do is to lessen the pain, not to mention everything else that goes with it.
May 8, 2016 at 5:08 pm #75070
Thank you very much for sharing your story with us. I am sorry to hear that you are still experiencing frequent migraines. When I was getting botox, I also felt that I could not hold my head up for the life of me!
I discussed this side effect with my neurologist and he stopped injecting as much in my neck which really helped.
I have also tried Zecuity! It was definitely much different than any other medication I have taken only because it is transdermal. The medication that is in zecuity, sumatriptan, has never really been my go-to abortive even in the pill or injectable form. I find that Cambia works better for me when I have an attack. Anyhow, the Zecuity lessened my pain a little bit and I had no negative side effects. The only thing that I noted was that my skin was a little irritated after taking the patch off. Nothing crazy, just red dry skin.
If your doctor has prescribed it, I think it is definitely worth giving it a shot. Perhaps you can take it at night or when you have no obligation to go anywhere.
My heart breaks for you to hear about how you feel like you let your daughter down. I understand how hard it can be but you have to remind yourself that all you can do is your best. Unfortunately, migraine is an incredibly debilitating disease and whether they want to or not, our family has to accept where we are at.
I wanted to share a few articles with you about migraine and parenting. If you are interested in feedback from other community members, be sure to check out the comments under each article!
-Migraine Doesn’t Make You a Bad Parent: https://migraine.com/?s=parent&submit=Go
-Talking to Your Children About Migraine; https://migraine.com/blog/how-can-i-talk-to-my-children-about-migraine-part-1-my-migraine/
-How Can I Keep Parenting During a Migraine?: https://migraine.com/blog/how-can-i-keep-parenting-during-a-migraine/
I hope you find this information helpful.
We are here for any follow up questions, comments or concerns you might have.
Jillian (Migraine.com Team)
May 18, 2016 at 1:08 am #75487
Fioricet has been the only thing that’s helped break the pain for me over 10 years. I have to take 4-12 per day as it doesn’t kill it. But as far as functioning it beats dilaudid which turns me into an invinceble 5 year old (mentally) it also keeps me up ( they think my receptors are flipped).
July 29, 2016 at 12:31 pm #77669
After 20 years of taking one to one and a half Fioricets a day along with one regular Tylinol, my GP suggested I see a neurologist for my almost daily headaches. I’ve had almost daily headaches for 40 years (dull frontal tension types) with occasional migraines. The neurologist gave me a prescription for Topamax and offered me a week of Prednisone to help going off the Fioricet. Sorry, I said, I don’t want to bloat up and ruin what’s left of my osteopenia bones for nothing, so turned down the Prenisone and went cold turkey on my own. I held off taking the Topamax for two reasons: 1. I was terrified after reading the mediocre ratings given for it online and the long horrible list of side effects, including BLINDNESS. I had just been through cataract surgery and am 69 years old, so felt no thanks on risking THAT. 2. I was going to visit a friend for two days this week, which involved a 2 hour drive and didn’t want to risk trying a new med while driving. The first 3 days after stopping the Fioricet, I had a pressure in my forehead but no real headache. The 4th day, the one visiting the friend, I had a headache all day, but took nothing and managed to even take a long walk in the hot sun during it. Not pleasant but I managed. The next day it was better, though still there a little bit. When I got back from the trip, I took my first Topamax just to try it, but only half a pill before bed. In the morning, I took the other half. I felt like a zombie. Drove to town to run errands and while in the bank, I literally didn’t feel like myself. Had I been taken over by aliens? Who knows? Not good. Came home and popped open a Diet Pepsi and it tasted flat. Got online and guess what – some people reported that while taking Topamax, they couldn’t taste carbonation! WTH? I thought, I hate this drug. NOT taking it.
So it is now one week after visiting the neurologist. I have not taken a Fioricet since and do not really have a headache now, though there is some feeling of pressure. I think I tense my head muscles, though this is not always the case. I have different types of headaches, they don’t all feel the same. They are: off and on daily tension, bad tension (spoils my fun, so to speak), real migraine (sickening – definitely need a Fioricet and to sit down quietly and do nothing at all till it kicks in), and ocular (very rare – the flashing lights and no pain, lasts 20 minutes, just wait it out.)
What I would like to do now, since I know I can go without the Fioricet on a daily basis, is to use it only for a sickening migraine. Since those last several hours, this might involve taking 2 or 3 over the day. Then I would return to taking none. I need to mention here that I cannot take aspirin, Aleve or any NSAIDS. They turn my stomach into an acid pit and/or give me the runs. Miserable. Tylinol alone does not take away the headache. Only Fioricet works. So, my question if any doctors are reading this, is: why, to a neurologist, is it perfectly okay to take a horrible drug that can cause kidney stones, make you go blind and turn you into a zombie every day for the rest of your life but it’s not okay to take one Fioricet a day? (not that I want to take it everyday anymore, but just asking – when I did take it like that, I had yearly or twice yearly blood tests and my liver and kidney function are good). This makes no sense to me. I can understand if I were taking 3 or more a day, but I don’t get taking one a day. I’m afraid that now if I decide to continue on as I am (NOT taking it daily and just using it for a full scale migraine) that doctors will refuse to prescribe it for me. At the moment, no problem, I have enough, but what if I live to 90?
July 30, 2016 at 2:31 pm #77675
Thanks for the detailed description of what you experienced. I’m not a doctor, but will try to share with you a few things about your story:
1. I’m glad you were able to go off of Fioricet. Taking them on a daily basis can cause rebound headaches, which is why you are likely having fewer Migraines now that you are off of it daily. It’s great to take when you have a monster migraine to get through the pain, but daily use can cause some issues. Here’s info on rebound or medication overuse headaches: https://migraine.com/blog/migraine-narcotic-drugs-rebound-headaches/
2. Topamax can be a very helpful drug to many who have migraine. You’ve discovered the laundry list of side effects, some being quite scary. Not everyone will experience these. And if you start taking it and find the side effects overwhelming- talk to your doctor. What dose did you start out on? It’s very important to start low and then work up to a higher dose. Typically increasing in increments of 25mg at a time. I believe there is an increased risk for some side effects when you reach higher doses. The max I typically see is 200mg, sometimes 300mg a day.
You mentioned the first time you tried it, you took half a pill at night and half during the day. Ask your doctor, but I recommend taking it any dose only at night. It can make you sleepy and it can make you very confused, like you experienced. Also sometimes switching to an extended release can alleviate some side effects.
3. In the end, topamax is not for everyone. Follow your gut, but discuss with your doctor. There are other preventative medications that have less side effects and are more gentle on your body.
Let me know if I can help at all.
July 29, 2016 at 4:44 pm #77672
Unfortunately like you fioricet is the only thing that helps me. Recently my Neuro started making me pick up the RX slip and no refills (like it was a schedule 2 drug). I asked my pharmacist and he said there’s a lot of confusion over the scheduling of fioricet recently. So that might be one reason you’re Neuro is hesitant. As you probably know it also has acetaminophen which is a NSAID- they are finding out that NSAIDs are much worse than originally thought. Also taking most headache meds daily puts you at risk for medication overuse headache, but if that’s not how you’re using them it shouldn’t be an issue.
I’ve had to go on anticonvulsants in the past for my migraines but like you stopped due to the side effects. My understanding is the pathology of migraines is similar to epilepsy. During my 2nd week of topamax I stopped being able to do basic addition & subtraction; so my Neuro switched me to depakote and made me promise I didn’t want kids. Eventually I got off it, as the stuff is really horrid.
I think they are trying to help, but there aren’t any simple answers. Sometimes a dr just isn’t a good match, if that’s how you feel I’d look for another. Ultimately up to us as patients to do our research and make the choices that are best for us.