5 Struggles People with Cluster Headaches Face at the Pharmacy

Pharmacist with Patient | Cluster HeadachesFor most people, the pharmacy is that corner in the grocery store you occasionally go to for antibiotics and other normative sickness medications. The pharmacy is a weekly, if not daily, stop for cluster headache patients and really anyone who has an unrelenting condition. One trip to the drugstore for me can involve at least one phone call to the pharmacy itself, another to my doctor, and perhaps one to my insurance provider. All of that happens before I even leave the house to go to the pharmacy.

I know I’m not the only person with cluster headaches to get panic attacks just thinking about refilling a medication or a new medication that doesn’t have a generic yet. I’m not even going to get into how difficult it is to get high-flow oxygen for cluster headaches—the most effective cluster headache treatment. There are dozens of struggles we face before, during, and after the pharmacy visit, but I’ve narrowed it down to these five:

There are dozens of struggles we face before, during, and after the pharmacy visit, but I’ve narrowed it down to these five:

1.    “Your Insurance Won’t Cover this Medication.”

Many medications used to treat cluster headaches are prescribed off-label. Why? Because there hasn’t been any pharmaceutical drug created specifically for cluster headache patients, so we’re left with calcium channel blockers, steroids, anti-seizure, anti-psychotic, anti-inflammatory, and anti-migraine drugs. Some insurance providers won’t cover an off-label prescription, especially if it’s going to cost them a lot of money, and so you have to jump through hoops, such as:

  1. Asking the pharmacist to call your insurance company
  2. Calling your doctor and asking him or her to call your insurance company
  3. Calling the provider yourself and begging for an exception
  4. Paying out of pocket for the medication and filing a claim to be reimbursed

If you have excellent insurance, you may never face this issue, but unless it’s documented that this drug (for example, Verapamil or Topamax) is effective at treating cluster headaches, you could be left paying out of pocket.

Advice: Try to make friends with your pharmacist. They can run interference and help you out when you’re in too much pain to handle the insurance issues.

2.    “It’s Too Soon to Refill this Medication.”

Medication injections | cluster headache treatment options Here’s when my panic attack begins. You see, abortive medications such as sumatriptan injections and Zomig nasal spray are expensive and taken as needed, so insurance companies put limits on how much you can have per month. Some approve as few as four injections a month whereas others allow up to 20 or an unlimited amount, but often you can only get two at a time. During one cycle, I went to the pharmacy every day for 28 days to refill my injections because I was using two per day and could only get two at a time.

Each cluster headache patient is unique. I have 2-4 attacks a day during an episodic cycle, but others can have as many as 12 short-lived but excruciating attacks a day, meaning some clusterheads will use more meds than others. Now, it’s only safe to use up to 12 mg of sumatriptan/IMITREX injections a day, and the prefilled syringes come in 3mg, 4mg or 6mg. The point here is that patients are screwed over in a sense because they’re often left without adequate amounts of abortive medications because of insurance restrictions on when and how many times they can refill a prescription.

It’s important to note that too much sumatriptan and other abortives can cause rebound attacks or “medication overuse headaches.” Some research suggests that medication overuse can turn episodic cluster headaches to chronic.

Advice: Your neurologist, headache specialist or whoever prescribes your abortive meds may need to file a claim with your insurance provider to allow you to fill your prescription and receive more than the company’s mandated monthly allotment. This usually works, but may need to be done every year. However, the absolute best advice I can give you is to request the sumatriptan vials—you get more bang for your buck and can fill the syringes with as little as 2-3 mg depending on how much it takes for you to abort an attack.

Loophole: I recently found out that you can call your insurance company and make a “vacation request” to refill your medication faster. You can do this by stating you’re going out of town and need your prescriptions while you’re gone. Keep in mind that you can only use this loophole once or twice.

3.    “We’re Out of Your Medication.” Or “We’re Waiting on the Manufacturer.”

This one grinds my gears the most. I once drove to four King Soopers in Denver just to refill my injections because every other store was out of them (granted, I was the reason my local one was out). It would be nice if you were told this before you drive to the pharmacy, but life is never that easy. You could avoid this by calling the drugstore beforehand or asking if they’re well-stocked when you do get it filled.

Now and then, the manufacturer of certain medications can get behind or put on hold the development and distribution of the drug. That’s utterly ridiculous and quite dangerous for patients whose lives depend on pharmaceutical interventions. This happened recently with sumatriptan. There’s not much you can do in this case but try another abortive such as the nasal spray in the meantime. This could be a good opportunity to try the newer options out there such as the handheld vagus nerve stimulator by gammaCore® which was *gasp* made specifically for cluster headaches!

Autonomic Technologies™ also created an SPG stimulator for cluster headache patients. It’s approved in Europe and will hopefully be available in the U.S. in Summer 2018. It’s shown great promise in clinical trials, and I’m excited to see how our patient community will benefit when it’s an option for us in America.

4.    “We’re Waiting on Approval from Your Doctor.” or “You’re Out of Refills.”

The waiting game for these phrases is mind-numbing. Luckily, I have a great headache specialist (Dr. Judy Lane at Blue Sky Neurology in Englewood, Colorado), but even the best doctors can take a while to get back to you or the pharmacist. You basically have to leave several messages for your doctor’s medical assistant and cross your fingers that he or she will get it done quickly.

Cluster headache patients are not the only group to experience the “out of refills” dilemma. However, this situation is particularly paralyzing because going one day or even a few hours without an abortive medication could mean the difference between life and death. Cluster headaches are nicknamed “Suicide Headaches,” because of the high number of patients who’ve taken their lives due to the pain.

Advice: Whenever you go to see your neurologist or prescribing physician, go over your list of medications and make sure you have enough refills for the next few months or year. Ask him or her about emerging treatment options and if they have any samples in the office. You can also ask if there’s a cluster headache clinical trial for which he or she thinks you would be a good candidate.

5.    “Does this Work for Your Migraines?”

This isn’t a struggle but more of a pet peeve of mine. The abortive medications clusterheads are prescribed are usually used for migraines, so naturally, the pharmacist assumes I have migraines. In my not-so-proudest moments, I’ve exclaimed loudly (Okay, I yelled), “I don’t have migraines. I have cluster headaches. Do you even know what they are? Yes, they work to treat the attacks, but it doesn’t change the fact that I have four of them a day, one of which is coming within the hour.”

I’ve gotten better over the years. Bob Wold of Clusterbusters (a nonprofit organization for cluster headache patients) sent me oxygen pamphlets, which I dropped off at several pharmacies in Denver to help both pharmacists and patients understand cluster headaches and that high-flow oxygen is the best abortive treatment.

Advice: It’s easy to react, but it’s more rewarding to educate.

cluster headache medications and treatments | Books on Cluster Headaches

The pharmacy is a scary place for me during an episodic cycle—I have vivid memories of having attacks while waiting in line and losing my spot to go ride it out in the back seat of my car, of tears streaming down my face while the pharmacist told me she couldn’t fill my prescription that day, and of my friends yelling at the pharmacist for me while I writhed in pain in the passenger seat.

I hope this article doesn’t open old wounds for you but rather helps you gear up and prepare for the struggles you’ll more than likely face next time you go to the pharmacy.

Did I miss any of your pharmacy hassles or pet peeves? Let me know in the comments!

Pain-free wishes,

Ashley S. Hattle

Author of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man

Member of the Board of Directors at Clusterbusters—Nonprofit organization for cluster headaches

Medical content and fiction writer

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