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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.

Adderall

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.)

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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 HealthWarehouse.com for the lowest prices. Sumatriptan (Imitrex) tablets are by far the least expensive at $1.44 per pill on HealthWarehouse.com 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.

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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 Migraine.com about rationing triptans, which I wrote before I knew about this study. If I’ve missed anything, I’ll add it to that article.

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Dietary Supplements: Does the Bottle Contain What the Label Says?

Do store brands of dietary supplements contain the ingredients the labels claim?, asked scientists from The New York attorney general’s office. In analysis of supplements from Walmart, Target, GNC, and Walgreens, they found that only 21% of the supplements did contain the ingredients listed and that “most” contained ingredients not included on the label. The resulting response has included furor over the attorney general’s testing methods as well as people claiming that these results support what they knew all along. Amid all the outrage, some interesting points have caught my eye. Here’s what I found most interesting:

How Not to Test a Dietary Supplement in The New Yorker examines whether DNA barcode testing is an accurate way to assess the ingredients of supplements. (Tammy Rome, an herbalist and writer for Migraine.com, argues that it is not.)

Your Vitamins May Be Lying to You: Why Big Herba is Out of Control, in Salon, carries important information far beyond the sensational headline: “The very same mega-companies with gigantic chemical labs that make drugs are cooking up vitamin and herbal supplements labeled with sunny terms like ‘natural’ and ‘wholesome.’ Pfizer, Unilever, Novartis, GlaxoSmithKline and other big pharmaceutical firms make or sell supplements. Procter & Gamble Co. and Arm & Hammer are also in on the action. Wall Street is getting in on the game, too: the Carlyle Group, a private-equity titan, owns NBTY (formerly Nature’s Bounty), whose brands include Nature’s Bounty, Sundown Naturals, Puritan’s Pride, and Vitamin World.”

People take herbs and supplements for a variety of reasons, only one of which is distrust of the pharmaceutical industry. Still, if that’s important to you, then you’ll want to do careful research to find out if you’re supporting Big Pharma when purchasing supplements. Other people will seek out supplements sold by pharmaceutical companies, assuming that they have more rigorous scientific and safety standards than smaller, less known companies.

In Be Careful Where You Buy Your Herbal Products!, headache specialist Alexander Mauskop, M.D., discusses the supplements he recommends and says that his preferred brand is Nature’s Way.

As so often happens, I’m left with no answers, just more questions. First, what about non-store brands? Does Nature’s Way, for example, contain the DNA of the listed ingredients? If so, it supports the idea that store brands could be lacking, though even that raises additional questions. If not, we’re still left to wonder if the testing methods were inaccurate or if all supplements or bogus or something in between. Also, if the pharmaceutical industry plays a large role in the supplement industry, does that make supplements more or less reliable, or does it make no difference? From my reading today, it appears that how you answer that question depends on your beliefs about Big Pharma. Finally, does this even matter? Will it change consumers’ purchasing behaviors? Will it just increase the divide between those who think supplements are the best and those who believe they’re hogwash? Will people become even more invested in their existing opinions, as studies have found happens when people who are anti-vaccination are shown pictures of children with the disease they aren’t vaccinating for?

What’s your reaction to the news? Will it change the way you think about supplements or where you buy them?

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Sensitivity to Drug Side Effects Increased by Migraine Attack

Nine days of dizziness following four days of migraine. That’s what I’ve been up to these last two weeks.

The migraines made sense. We had rainstorms that week and I’d blown off my diet a couple times. The dizziness, however, was surprising. Wellbutrin has been to blame every time I’ve been dizzy in the last 16 months, but it didn’t make sense. I haven’t changed my dose in a few months months. I’d eaten plenty before taking it each time and hadn’t missed a dose. Maybe I accidentally took too much one day? I skipped a dose intentionally, took it at different times, took 300 mg instead of 450 mg. When the dizziness did lessen, the reprieve never lasted long. It was as if the migraine attack had made me more sensitive to Wellbutrin’s side effects.

It seemed unlikely that one migraine attack would change how I reacted to medication I’ve been on for more than a year, but my headache specialist told me he’s seen it happen with other patients. As he put it, the brain you have after a migraine attacks is not the same brain as you had before it. Any medication that acts on the central nervous system, like antidepressants, could interact with this new brain in a different way than before, causing an increase in side effects. My dose hadn’t changed, my brain had.

The changes to your brain after an attack are not permanent, so please don’t let this scare you. It’s more like a storm with high winds came through and there’s still dirt and debris in the street. The street sweeper will get to it eventually, but it may take some time. (I live in a place with haboobs and dramatic thunderstorms. You can liken it to a snowstorm if that’s more familiar.)

I’ve been taking 300 mg of Wellbutrin for the last week. Today I can look at the computer without feeling like my head is melting as if in a psychedelic video, but I still have to be careful to minimize the chance of side effects whenever I take a dose. My fingers are crossed that this part of the change to my brain lasts and that I can keep the depression at bay on this lower dose.

My naturopath/therapist believes that my depression is directly tied to migraine attacks. Since I started seeing her almost two years ago, every increase in depression has followed a long migraine attack that didn’t respond to acute medications. This fits with my headache specialist’s explanation. I haven’t waited to see if the depression abates without medication, but I wonder if it would. Not enough to find out, but I will ponder it.

My fingers are crossed that I have the internal mess from this latest storm cleaned up. Now it’s time to attend to everything I haven’t been able to attend to while weathering it. I’m going to read and approve a slew of comments now, but it will take me a while to respond to all of them.