Gastroenterologist, Adderall, and Migraine Status

Gastroenterologist & Headache Specialist

I’m sorry to report that I didn’t learn much from the gastroenterologist (I know many of you were eager to hear something that might help you). He doesn’t think it’s a functional GI problem, but is a neurological problem. He said he’d be willing to do the tests if I wanted them. I went in thinking I’d do them no matter what he said; now don’t think I will. After four years of exploring other avenues, I am inclined to agree with him that the issue is neurological. I asked about using preventive migraine meds that would target the neurotransmitters and hormones that are released at the start of digestion. He shook his head and said he was sorry that he couldn’t help with that. I asked my headache specialist the same day and got more information, but still the same outcome—it is impossible. He said that the body is flooded with neurotransmitters during digestion. It would be impossible to pinpoint which one or ones are problematic. Even if we could, it’s unlikely there are drugs that work on those neurotransmitters.

My headache specialist did confirm that there’s a small set of people who have migraine attacks triggered by eating anything. I told him that it almost seemed reasonable to stop eating for a couple weeks. He told me about another patient whose migraine attacks are triggered by eating—she wound up in inpatient treatment for eating disorders because she was so afraid to eat. He also said that she’d been in the week before me and was doing great. He couldn’t remember what drug she was on, but was going to look into it for me. I’m about to call the office now and will report if I get any information.

My chart notes from the headache specialist say, “I told her that it is important that she obviously continue to eat, and that if we find the right preventive regimen she will be able to eat without triggering an attack.” It summarizes much of the appointment. He also made it clear that he understands that my case requires straying way off the path of typical preventives. We’ve been off that path for a long time, now we’re on the verge of proceeding as if there were no path at all. He prescribed Celebrex and Adderall for preventives (more on that in a minute). And, if those don’t work, we’ll try monoamine oxidase inhibitors. MAOIs used to be used a lot for migraine preventive, but require strict adherence to a restricted diet to avoid a life-threatening reaction. Good thing that my ability to adhere to such a diet is so well-established. That drips with sarcasm, as it should, but I’m game if MAOIs are effective for me.


What those of you with fatigue want to hear about is the Adderall. My headache specialist has several patients who have had a reduction in migraine attack frequency on stimulants. I tried Ritalin a few years ago. It wasn’t an effective preventive for me, but it gave me energy… for a week. Then it did nothing. I’ve been on the Adderall for just over three weeks now. Whether it’s working as a migraine preventive is still up for debate. What it is doing is giving me enough energy that I’m not glued to a horizontal surface all day every day. It’s not giving me crazy amounts of energy, more like returning me to my energy levels on non-migraine days in 2014. I’ve been terrified that it wouldn’t last, so I’ve been cramming in as much activity as possible.

Three weeks in, it feels a little more like the energy is here to stay, but three months is the critical point for me. I’ve had some drug side effects last that long, then disappear. I don’t think my energy is a drug side effect, but I still can’t believe that it will last. I have had slightly less energy in the last week than in the two previous weeks, but I’m holding out hope that’s diet-related.

I expect Adderall is probably only providing me with symptomatic relief. I’m OK with that, but am hopeful it will also work as a migraine preventive.

Why I’m Not Writing

For more than a year after I started taking DAO, all I wanted to do was write. I had a million other things I wanted/needed to attend to, but writing was my priority. Now it’s like pulling teeth. It doesn’t feel like I have cognitive dysfunction in day-to-day life, but trying to write tells me otherwise. It’s not enough to interfere with decisions or driving, or even show up in most conversations. But it’s enough that I can’t do my highest levels of mental activity—like reading medical journal articles and writing.

I’m using my physical energy to do the other thing I’ve daydreamed about: work on my house. I’m in the middle of painting the kitchen cabinets and have enlisted Hart’s help in moving furniture. I’m planning which cork flooring I want to replace the bedroom carpet with and choosing color schemes. I’m thinking about which plants will fill our yards. I don’t know how much we’ll be able to do right now (either ourselves or hiring someone), but at least there will be a plan in place that I can execute even if I’m laid up.

Migraine Status

I still have a migraine attack every time I eat, but I only have to take Amerge to stop it (not Midrin, too). The migraine doesn’t knock me out within five minutes of eating; sometimes I can wait an hour after eating before taking the triptan. And the triptan keeps me from feeling anything more than minor migraine symptoms before it does the trick. It seems ridiculous that this feels like progress, but I’ll take what I can get.

I’m still on the same diet—eating anything else results in a migraine that drugs don’t eliminate. Those migraine attacks aren’t too bad, but do sap my energy for the next day or two (even with the Adderall). Since I don’t believe the Adderall will last, I’m not willing to waste a single day. I’m also still eating only once a day. That’s so I only have one migraine a day and can keep an Amerge in reserve in case another trigger, like odors, set another attack in motion. Tolerex (the feeding tube formula) became a trigger this spring; I’m planning to try it again in the hope that a two-week reset will help reduce my food sensitivity.

The Adderall or Celebrex could be responsible for my reduced sensitivity, but stopping the probiotic might be, as well. I have no doubt that my GI symptoms were caused by the probiotic and there’s a good chance my renewed sensitivity to all food was, too. I stopped taking it in late August and my GI symptoms have been slowly resolving since then (they are almost completely gone). It would make sense that I have a gradual reduction in migraine frequency as well. It took three months of a ridiculously high dose of probiotics for the GI symptoms to start and six for the food sensitivity to return in full force. So I tell myself it took six months to get into this mess, it will take at least as long to get out of it.

I’m Not Gone for Good

I’m not sure how much posting I’ll be doing for a while, but will be back soon(ish). I hope to at least respond to comments in the next few weeks. I miss interacting with you all and I miss writing. I am, however, pretty happy with how my kitchen cabinets are coming along.

(I don’t have the brainpower to edit this post. I appreciate you muddling through the typos and hope it makes sense.)


Soaring Prescription Drug Prices: Pharmaceutical Companies Pressured to Justify Pricing

Drug Prices Soar, Prompting Calls for Justification

prescription_drug_pricesWhat a welcome headline from the New York Times. The cash prices of prescription drugs have always seemed eye-poppingly expensive, but in recent years, the pricing is closer to heart-stoppingly exorbitant. (Obviously that’s hyperbole, but it feels close to the truth. I’ve been researching triptan costs this week. Treximet, a combination of a (relatively) inexpensive generic triptan and an OTC painkiller, costs $71.10 per pill! That’s with a discount with a prescription card.)

Pressure is mounting for pharmaceutical companies to disclose drug development costs, profits for specific medications, and how prices are set, according to the New York Times article. It’s coming from a wide range of sources: doctors, patients, patient organizations, state and federal politicians, the U.A.W. Retiree Medical Benefits Trust, and even Bill Clinton. At least six states have introduced bills in the last year to require drug companies to justify pricing.

More than 100 prominent oncologists call for a grassroots movement to stop the rapid price increases of cancer drugs in an article that will be published in the journal Mayo Clinic Proceedings tomorrow. “There is no relief in sight because drug companies keep challenging the market with even higher prices. This raises the question of whether current pricing of cancer drugs is based on reasonable expectation of return on investment or whether it is based on what prices the market can bear,” they wrote. Although the focus is cancer drugs, these problems apply to all prescription drugs.

Unsurprisingly, pharmaceutical and biotech companies are balking. You’ve heard the explanations: research and development is expensive, something has to cover the cost of all the drugs that don’t make it to market, and  drugs can lower health care spending in other areas. That’s not the whole story, of course. This anonymous comment from the director of a multiple sclerosis drug developer is telling: “We all look at each other and keep pace with each other. Honestly, there is no science to it.” There’s also the fact that Medicare is legally barred from negotiating drug prices—they must pay whatever drug companies charge.

I’m probably more sympathetic to pharmaceutical companies than many patients are. Drug development is expensive and some drugs have a narrow market limited by a small number of patients with a disease. Publicly traded companies have to earn profits.

And yet. How much of pricing is determined by the fact that the person recommending the drug and the one taking the drug usually don’t even know how much it costs? How much of it is price gouging simply for the sake that it can be done? This article only addresses brand name prescription drugs; generic drug prices are also ridiculously high (and rising).

The media has been covering high prescription drug prices with increasing alarm over the last few years. This coverage and awareness-raising are critical first steps, but what do we do next? How can patients fight back? We can sign this petition, which is focused on cancer drugs, and email our state and federal representatives. But what else? I want to DO something, not wait for lawmakers to maybe, hopefully fix the problem. Boycotting the drugs feels like our only potential source of power. Even the most principled of us are unlikely to forgo medication we need to function or live to make a point. I feel trapped and powerless… which, for pharmaceutical companies, is the perfect place for patients to be.


8 Ways to Manage Insurance Triptan Limits

insurance_triptan_limitsAs expected, none of you were surprised that people with migraine don’t take triptans for every attack. Although there are many reasons for this, insurance triptan limits keep most of you who commented from getting enough meds to last the month. If you’re in the group whose doctors would prescribe more*, but your insurance company won’t cover them, here are some ways you might be able to increase the number of triptans you get each month. The first four can be done at no additional cost to you; the last four will cost additional copays or have an out-of-pocket cost.

1. Try filling a higher quantity prescription: Not all insurance companies have limits. On an old insurance plan, I was able to get 60 tablets a month for the cost of two copays. Coverage like this appears to be more common with company insurance plans, rather than individual ones, but it’s always worth a try.

2. File an insurance appeal: Insurance companies have a process for doctors to request on override on medication limits. Call the company to find out exactly what information they need and provide it to your doctor. Your best bet is to only ask for a small increase in the number of meds each month. My doctor requested 30 and my insurance company told me they would probably have approved 12, but 30 was way too many.

3. Split pills: Some triptans can be split. Whether or not this will work for you depends on the drug itself, your dose, and your other health requirements. Do not do this without first consulting your doctor!

4. Use tablets: Injections, nasal sprays, and dissolving tablets cost insurance companies more than tablets and are often more limited in quantity. If triptan tablets work sufficiently quickly for you, check to see if your insurance company will allow you more tablets than other forms.

5. Double the copay: Ask your insurance company if you can get the same prescription twice with two different copays. If you normally get six triptans for $15, you might be able to get 12 for $30.

6. Use two different triptans: If you can’t get the same prescription twice, you might be able to get two different kinds of triptans with two copays. In my information survey, this seems to be the most common allowance that insurance companies make. (Talk to your doctor about dosing. Most say to not take two different triptans within a 24-hour period.)

7. Use two different delivery methods: A reader said that her insurance will cover prescriptions for both Zomig tablets and Zomig nasal spray each month. The same would work for others with multiple delivery methods, like Imitrex (sumatriptan) injection and tablets or Maxalt (rizatriptan) ODTs and tablets.

8. Pay cash (with a discount): If your insurance company won’t budge and it’s within your budget, you can pay cash for additional triptans. You pay per pill and price depends on which drug you get and which delivery method you use. I use a drug discount card (GoodRx) or go through for the lowest prices. Sumatriptan (Imitrex) tablets are by far the least expensive at $1.44 per pill on and $1.60 per pill through GoodRx (as of today, prices fluctuate). You can check prices for both online. Readers have also recommended Costco.

How do you manage insurance triptan limits?

*Medication overuse headache (a.k.a. rebound headache) is a serious risk that can increase attack frequency and make migraine even harder to treat. Only an extended period without the problematic medication and close consultation with a knowledgeable doctor can determine whether you are at risk.


Why People Don’t Take Triptans for Every Migraine Attack

triptans_to_takePeople with migraine do not treat an attack with triptans 43% of the time despite significantly more disability when they do not take a triptan than when they do. This finding, from a study presented at the American Headache Society conference in June, was not news to me and probably isn’t to you. Of course people with migraine don’t always take triptans—they’re expensive, we’re afraid of running out before the month is over, and we fear medication overuse (rebound) headache (and that’s excluding people for whom triptans are ineffective or contraindicated).

The surprising part was the clueless explanations Medscape offered for why we don’t take triptans for every attack. I was angry with the doctor they interviewed for the article before noticing that the direct quotes from the doctor are all technically correct (though perhaps a bit out of touch). It’s the information attributed to the doctor but not directly cited that’s particularly problematic. Having incorrect information published is never good, but I’m less angry about a reporter being clueless than a certified headache specialist being so. Here are some excerpts and quotes from the article and what I understand to be true for patients. If you have any additional thoughts, please leave a comment.

“[A]lthough formulary restrictions and/or insurance coverage may be playing a role in the nonadherence, the situation now is not nearly as bad as before many triptans became generic, when insurers would limit the number of allowable pills per month.” [excerpt from the article, not a quote from the doctor]

Insurers limit the number of generic triptans they’ll cover in exactly the same way they limit name-brand triptans. I’ve never heard a single person say they get a higher quantity of a generic triptan than of name-brand drugs. Do you get more triptans if you choose generic over name-brand?

“People will wake up at night with a screaming headache and, instead of getting out of the bed and taking their medication — which is what we tell them to do — will often lay there desperately trying to go to sleep for hours. I’ve often wondered if that isn’t some sort of confusional episode related to the migraine.” [direct quote from the doctor]

I have lain in bed and not taken medicine because it hurt too much to get up to get the pills or a glass of water. (I also wait to go to the bathroom until I’m on the verge of wetting the bed.) One of my most vivid migraine memories is dragging myself across the wood floor on my stomach to get to my medication in the next room. It took 45 minutes to go 20 feet because I had to stop to rest so frequently. Another possibility is that we’re told triptans aren’t as effective when the pain is already bad, so it seems like a waste of a precious triptan to take one when you awake with your head already screaming. The idea of a confusional episode being responsible is interesting, though. Do you think there’s merit to that idea?

“[Y]ou’d be surprised at how many patients wait to see how bad it’s going to get before they do anything. It’s almost like they’re hoping it won’t do what it did the last 50 times.” [direct quote from the doctor]

Triptans are expensive and we’re limited in the number we get each month. By using up this supply too early in the month, there’s always a risk of getting stuck with a horrendous migraine and not being able to treat it. We’re also warned of medication overuse (rebound) headache everywhere we turn—if we’re told taking medication could make our migraines worse, we’re going to be very careful about when we take the medication. And someone who has a lot of side effects from taking triptans is going to wait until it’s absolutely necessary to take the drug.

“Others may be trying to avoid a condition known as a ‘post-drome,’ Dr Ward said, in which taking a triptan at the first sign of a migraine can move the patient straight from pain to a feeling of sleepiness or unease.” [excerpt from the article, not a quote from the doctor]

What? I can’t make sense out of this one. Postdrome follows the pain phase of a migraine attack whether or not a person takes a triptan. Taking a triptan and jumping to postdrome is preferable to waiting through the pain phase to get there.

Did I miss anything? Are there other reasons you don’t take (or delay taking) triptans? I have an article pending for about rationing triptans, which I wrote before I knew about this study. If I’ve missed anything, I’ll add it to that article.


Tipsy Turbulent

While responding to a email about a post I was scheduled to do this month, I tried to say it was unlikely to happen because my health was still topsy turvy. My phone autocorrected to tipsy turbulent, which I may like even better. Though tipsy implies fun, which this has not been.

The short version: my migraines are different than they were before the infusions, but still come on every time I eat. I thought I had them figured out, then got a doozy. Then I thought I found a medication that helped, but it made things worse. I’m recovering from that medication now.

I move from optimistic to panicked to OK-maybe-I-can-figure-this-out, usually multiple times each day. I told a friend that I couldn’t get together because of a health crisis. This scared her. When I said it wasn’t life-threatening, she responded that she was glad it wasn’t serious. Except that it is. It’s not going to kill me, but it is serious. It could completely change what my days look like, moving me from writing and working and taking care of myself to a lump on the couch. It could mean that the freedom I enjoyed for a year will once again disappear. My drug-related freakout last Sunday made it all too clear that I’m terrified to go back there.

I told my doctor before the DHE infusions that if I got back to eating 40 foods without them triggering migraine attacks, I’d be thrilled. Now, I’d be thrilled to go back to being able to eat those 40 foods and controlling the ensuing migraine attacks with naratriptan and Midrin. It’s not a long-term solution, but it would be better than feeling like I’m in freefall.

So, yeah, things are topsy-turvy… tipsy turbulent… incredibly scary. I hope I’m headed in the right direction, but won’t know for at least a few more days.

P.S. Blurry vision is a new migraine symptom I developed this spring. It comes and goes; it has been in full force this week. I’m adding your 30 Things each day (we have more than 100 now! plus more on other blogs and, but that’s all the screen time I’m getting in. My spirit is with Migraine and Headache Awareness Month and I will highlight your stories, even if it’s long after June is over. Thank you all who have shared. I love learning about you and seeing your optimism, perseverance, and strength. If you haven’t had a chance to read these stories of fellow readers, please take a look at 30 Things. Want to share your story and enter to win a pair of TheraSpecs or a coaching session with me? Take a look at these instructions and be sure to submit before midnight Pacific time on June 29.