Aa
Aa
A
A
A
Close
Avatar universal

Insurance Co. no longer covers Actiq for headaches

I see my Pain Management doctor tomorrow. After taking Actiq for management of bi-weekly migraines and daily headaches for SIX YEARS, my insurance will no longer cover it. It would cost me $2400 per month which is insane and I cannot afford.  What can I talk w/ my doctor about as an alternative to the Actiq to help me tolerate the headaches that I have had for almost 25 years.  I am scared to death and very depressed with this pain.  It almost makes life not worth living.
Best Answer
Avatar universal
Sorry to hear about your loss of coverage.  I had the same thing happen to me.  I know exactly what you're going through.

Luckily for me, my Doc got me hooked up with a compounding pharmacy who makes the pops for me....They are reasonably priced.  That's the option I would pursue first.  Chances are if you've been taking fentanyl for this long, not much else will work.

Best of luck to you.

Ex
20 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Hi,

Sorry to hear about headaches.  Were you diagnosed with occipital neuralgia?  Because these exchanges are about four years old I thought I'd bring everyone up to date for what is reducing pain in my wife.  She had started EEG Neurofeedback about ten months ago for her intractable migraines.  Neurofeedback is the only form of treatment that has made a difference in the intensity of her migraines.  If you want more information try googling ISNR Neurofeedback and read through this organizations' background information.  I realize you tried a lot of things but I'd encourage you to try EEG based treatment.  I have such respect for how it made a difference in my wife's life.  
Ed
Helpful - 0
Avatar universal
Hey just wanted to see if you got help with your headaches.  I am in your shoes also, I was on the same medication when that happed. I saw a different doctor and he stated that I have headaches everyday (rebound) headaches due to the medication.  I have received occipital injections for my migraines.  Has helped some.  I am getting back into the more severe ones now after 4 years.  I am at last draw.  I am tired of throwing up every day I just want to crawl in a hole. Family I don't think understands.  I seem to get them right before it rains, really bad.  I have changed my diet.  I have tried everything, acupuncture, biofeedback, chiropractic, physical therapy, and even hysterectomy.  Nothing works.   Life ***** the only think that keeps me going is my kids, they are worth getting up every day.
Helpful - 0
Avatar universal
MEDICAL PROFESSIONAL
Hi,

Thank you for understanding and your kind words. I sincerely hope both your wife and jb323 are feeling better. Take care always.
Helpful - 0
Avatar universal
Executor,

Well stated and understood.  Thanks for the added knowledge.  I'll read the article you mentioned.  
Helpful - 0
Avatar universal
Yes Eddie, with any opioid, there eventually becomes the need for an increase in dosing.  This is called "tolerance" and is well documented in PM.  A good PM Doc manages tolerance well, as it is a very normal part of PM.  

Accordingly, virtually every study on tolerance and PM, has shown that there is essentially "no ceiling" in terms of dosing.  As long as increases are done prudently, and slowly, chronic pain patients can take very large amts of narcotics very successfully.  Effective titration is the key.  For example, I know a patient who takes 720mg of Oxycodone per day.  I know another who takes 5,000 mcg of fentanyl per day.  Both amounts would easily kill the average person, but in a opioid tolerant CPer, there isn't even minor sedation, but instead, effective pain relief.  

Ironically, in these two cases, one would never know these patients are taking such large amts if one simply judged the book by it's cover.  This is also why the OP in this thread needs a med of equal analgesic value, and why first line treatments such as acupuncture, are not appropriate.  Treating the opioid tolerant patient is much different than one who is not.   There is an article on this subject titled "When too much is just right."  It is a very enlightening article, if one chooses to learn about high dosing in PM.

Lastly, you write that "The risk of addiction is very real, then what?"  Current studies show that addiction is virtually non-existent in legitimate pain mgt patients, and is of little, to no concern for most PM Docs.  Conversely, abusers and diverters are who keep PM Docs up at night.  The risk of these two groups infiltrating a PM clinic practice is very real, and the strict rules employed by PM Docs are targeted directly at these people.  

Unfortunately, many use the term "addiction" incorrectly....And quite often mean to use the term "physical dependance" instead.  PD is very real and occurs in 100% of PM patients.  PD, along with tolerance, can be successfully managed.  "Physical dependence" and "addiction" are two entirely different animals.  "Addiction" is the psychological need, or emotional satisfaction / pleasure of taking narcotics.  And PD is not just for CP patients.....It's a very real part of every day life, as the human body very easily adapts to just about any constant element in it's regimen....Just ask the morning coffee drinker what happens when they don't get their daily regimen of Java, or the daily exerciser who misses a day.  This is "physical dependence".....Not "addiction."

Regards,

Ex  
Helpful - 0
Avatar universal
Agree with 90% of your comments.  My concern with Actiq or fentanyl is that at some point maximum pain relief is achieved then increasing dosages are need to maintain that relief.  The risk of addiction is very real, then what?  Is the patient best served this way?  jb solicited comments from this forum and that's all we are providing.

I take oxycodone for the last ten years for acute crushed nerve pain.  Periodically I take drug vacations.  It's not pleasant but I don't want to risk negative consequences.  Besides the vacations help reset my pain threshold so that fewer mg's are required.

A good source of the latest treatments for migraines is http://www.medicalnewstoday.com/sections/headache-migraine/
Helpful - 0
Avatar universal
While I can appreciate "alternative" forms of medicine, don't you think the OP tried some of the "first line" approaches already?  I doubt seriously that her Doc went straight to fentanyl.  Meds like fentanyl are usually employed when all else has failed.  While your wife may have chosen to not adopt strong opioids, it doesn't mean others should also.  Additionally, you can't compare cases....What your wife has, may or may not be anything comparable to someone else's condition.

Lastly, saying "In the current chain of comments here, I think Dr. Santos may believe that Actiq might be an extreme prescription", is very short sighted.  How would Dr. Santos infer this?  Is it because the media says so?  Physicians can prescribe any med for any reason, so you, nor should anyone else, judge what regimen works for a particular patient.  With all due respect, Dr. Santos hasn't even examined the patient, or familiar with the patient's chronic history.  I think the doctoring should be left to the patient's personal physician.  

Regards,

Ex
Helpful - 0
Avatar universal
I think you want the Anger Management forum, secondary to gastroenterology!  Good Day!!
Helpful - 0
Avatar universal
Yawn.....Oh Geez, pardon me...Gosh...Yawnnnnnn...What has gotten me so incredibly tired ? Could it be your long winded rant ?

Yawn...Oh Gosh, terribly sorry...Why dont you get in line behind Dr Santos & blow it out your *** ! !

Yawnnnn...People really do need to stop buying those boxes of Cracker-Jacks just to get the free prize. Which is exactly where Dr. Santos recieved his license.

Yawnnnn...Oh Gosh, i'm done ! !
Helpful - 0
Avatar universal
Keep perspective with regards to comments on this site.  I nor most anyone else are certified experts in medicine but the management of this site appears to go through great care to make sure that medical personnel are duly recognized as professionals by the medical symbol adjacent to their name.

We can agree to disagree with a Doctors' recommendation but their training is different than most others.  I have experience with with pain as well and it is truly personal - no else can feel my pain but they can empathize.

In the current chain of comments here, I think Dr. Santos may believe that Actiq might be an extreme prescription.  It was originally intended for Cancer patients extreme pain.  My concern, as is many in the medical community, is that over reliance on a medication so strong is inappropriate.  This is not to say it's not unnecessary, but at some point the patient needs to attempt another measure to see if it is possible to control pain with a less potent and dangerous drug.  For example, I had to use fentanyl patches for approximately five months to control severe intractable pain due to a crushed nerve.  There came a point in time that I needed to attempt to try other measures or face the more negative side-effects of fentanyl.  I was able to make that change to less dangerous medication but still opiod based.  We as patients need to work with our Doctors to make the best choices for a good quality of life.

Severe migraine pain is not lost on me.  My wife has suffered greatly from migraines over the last 16 years.  She personally chooses to decline opiods because of the side-effects.  Her choice is to "offer it up" when her first line meds like MaxAlt Melts don't work.  Her insurance company limits the amount she can purchase to a box of 12 per month.  Any additional melts tabs are at our cost of about $29.00 per melt tab.  The status quo treatment was a choice for us.  After 12 years, we finally found the cause of her migraines and she was able to initiate a migraine time after time once we found the sources.  In her case exposure electrical frequencies of 60 Hertz has reproduced her migraines.  We now try to avoid these sources but cannot completely do so because of its abundance in practically every part of our lives.

So while you try to find the source of your migraines please also try alternatives.  You never know what will work.  We were stunned (no pun intended) by my wife's migraine sources.
Helpful - 0
Avatar universal
Dr. Santos- I have to respectfully support and "ditto" Executor's response.  Ex is in no way trying to diagnose or recommend a specific medication for the OP.

jb323 clearly stated what medication has been prescribed & used for 6 years.  The issue here is that his/her insurance has decided not to cover the medication and now is left to either try and pay for it out of pocket, or find another form of treatment.  

I'm sure you would agree that fentanyl is one of the most powerful medications out there for treatment of pain, therefore anything less would be moving backwards in his/her treatment of this vicious migraines.

Noone is saying that atlernative treatments such as bio-feedback, accupuncture, etc. don't work.  There are cases where these treatments can and have helped many people, however going from Actiq to accupuncture is going to be a waste of money and time for the OP.
Helpful - 0
Avatar universal
With all due respect, May i advise you to pull your head out of your *** ! !
Helpful - 0
Avatar universal
I am fine thank you.  As a physician, I'm sure you understand that "listening" to a patient is key in helping them solve their medical problem(s).  The OP clearly indicated that she has been suffering from severe headaches for over 25 years and has been on fentanyl for the past 6+.  Additionally, she indicates that the fent pops have been successful in treating her debilitating pain.  Again, I'm not sure primary stage treatments are appropriate for this patient.  

The # 1 rule in pain mgt is "if it's not broken, don't fix it."  Thus, she needs to find out if a compounded version of the pops is feasible.  If not, then she needs something of analgesic value of the fent pops, and her Dr is the best source of information for this.

Regards,

Ex
Helpful - 0
Avatar universal
MEDICAL PROFESSIONAL
Hi,
How are you? I understand you completely. But one of the limitations of internet is that the complete medical history is not usually known and I think we should ask jb323 what she says about this to clear any doubts. That is why it is still highly recommended that patients see their attending physician for proper management. It is not advisable to recommend a specific medicine without knowing the full medical history of a patient. One medicine may wok for one but may not wok for another patient. Take care and regards.
Helpful - 0
Avatar universal
“I’ve had migraine headaches since I was in elementary school. I was going to the doctor four, sometimes five times a month and having to get shots to get rid of these headaches because Ibuprofen, Darvocet, nothing worked to get rid of them. Dr. Cartwright put me on NeuroBoost and when I saw what was in it I thought, well, this won’t work at all, but it couldn’t hurt, so I’ll take them…I haven’t had a headache at all this month.”

Testimony by, Joann Stumberg

You want to get off of the medication. It IS possible. You don't want to have to depend on the meds. I've found that natural medicines usually rid our body of the problems. Chemical meds just band aid it untill tommorrow...you know what I mean?
Helpful - 0
Avatar universal
It's very plausible that acupuncture may help the average headache sufferer.  However, as a physician, I'm sure you understand that patient history and stage of disease is paramount.  I seriously doubt that a patient who has taken fentanyl for six years for an advanced condition would even remotely respond to acupuncture.  This patient needs a med of near equal analgesic value, especially given she is opioid tolerant.

Regards,

Ex
Helpful - 0
Avatar universal
MEDICAL PROFESSIONAL
Hi,
How are you? I agree that for so long complementary and alternative medicine has been regarded as hocus pocus medicine. Complementary medicine is defined as nonstandard treatments that you use along with standard care practices. At present, there has been researches done to prove this type of medicine. The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (NIH) is the Federal Government's lead agency for scientific research on complementary and alternative medicine (CAM). The Center  has conducted plenty of researches and studies.  One research concluded that acupuncture could actually be a valuable option for patients suffering from frequent headaches. We are all here to help each other. A patient may want to try this together with existing medications or while waiting for the next appointment or for some other reason.  This is only a suggestion and it is actually the patient's decision in the end.  Best regards.
Helpful - 0
Avatar universal
With all due respect, alternative medicine such as biofeedback therapy, acupuncture and other relaxation techniques, are first stage processes and alternatives.....Not for advanced chronic pain sufferers who take fentanyl.  This patient needs real answers, not hocus pocus medicine.

Regards,

Ex
Helpful - 0
Avatar universal
MEDICAL PROFESSIONAL
Hi,
How are you? There are many medications available in the market today for migraines. I'm sorry to hear that your insurance will not be covering your medications anymore.  However, to determine the best medications suited for you, you may have to try several medicines.  Other factors to be considered include presence of co-morbid conditions and your medical history. Discuss this with your doctor tomorrow. You can also try complementary and alternative medicine such as biofeedback therapy, acupuncture and other relaxation techniques. This type of management works for some headache sufferer as well.   Take care and regards.
Helpful - 0
Have an Answer?

You are reading content posted in the Migraines and Headaches Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
1780921 tn?1499301793
Queen Creek, AZ
1756321 tn?1547095325
Queensland, Australia
Avatar universal
Trinity , TX
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease