A Supplement Worth Trying

I wanted to write a follow-up to my last post on this complementary migraine treatment:

So, does it work? In a word, yes.  There is a reason that German physicians prescribe butterbur and feverfew to migraineurs.  It is effective.  Where have I seen its effectiveness the most thus far? Premenstrual migraines.

I take three prescription medications to prophylactically manage migraines.  I have three T2 lesions on my brain resulting from twelve years of almost unmanageable migraines.  I saw another doctor yesterday about migraine management, and he said, “You are doing everything imaginable nutritionally to try to prevent and heal yourself from migraines.”

I am not fooling around.

Enter butterbur and feverfew with niacin.  Would it work?

This treatment typically takes a month to be effective.  I’ve been using it for less than one month.  This month, however, I did not experience the premenstrual migraine phenomenon which always happens.  No matter what I do, I can’t seem to prevent them, and those events are painful in a special way.  They have a different flavor (and yes, I know about estrogen dominance).

So, anecdotally, I can confirm, along with a good portion of the European medical  community, that butterbur and feverfew work! The supplement that I recommend is Preventa.  The company even sends you a migraine calendar to chart your migraines.

If you struggle with migraines and would like to try an alternative treatment or augment your current one, give this a go.  I’m seeing good results, and, coming from me, that is a dramatic statement.

 

Complementary Treatments for Migraine

I’ve written here before about migraines.  Grace was plagued by migraines during the prodromal phase of the disease onset (that feels like a redundancy).  Migraines are the bane of my existence.  My neurologist jumps through whatever hoops neurologists jump through in order to try to keep mine in check.  I have a “migraineur’s brain” meaning that I have T2 lesions on my brain that show up on an MRI.  Migraines cause lesions on the brain.  Scary thought.  Neurologists call it “scar tissue”.  I don’t know about you, but I don’t want scar tissue on my brain.  I don’t want Grace having scar tissue on her brain.

What can we migraineurs do about it?

I’m on a shit ton of medication which works prophylactically to prevent migraines, and, even though I still get them, it works 50% of the time in a bad month when stress is sky high and 75% when life is holding.  That’s not bad.

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Could it be better? Sh’yeah!

I have reached a somewhat desperate state.  I went to the emergency room at 2 AM this morning because my migraine was beyond self-help.  It was at a 9 or 10 on the pain scale, and, once the barfing starts, it won’t stop.  The good people of my local ER were on it, and I was home by 5:30 AM sans any pain at all.

This is no way to live.  So, if you live with chronic migraine disease, what can you do? My neurologist puts me on prednisone from time to time in an attempt to arrest a migraine that might feel like sticking around.  That didn’t work this time.  I’m on prednisone now, and that is not a drug one wants to be on.  Side effects, anyone?

Let’s talk about an alternative treatment.  Butterbur and feverfew.

In 2012, the American Academy of Neurology (AAN) updated its guidelines on migraine prevention to include complementary treatments. Based on reviews of clinical studies, the AAN recommends:

  • Butterbur (Petasites hybridus). Butterbur is a traditional herbal remedy used for many types of ailments, including migraine. The AAN considers butterbur “effective” and recommends it be offered for migraine prevention. Butterbur was the only non-drug treatment ranked by the AAN as having the highest proof of evidence (Level A) for effectiveness. Butterbur may cause an allergic reaction in people who are sensitive to ragweed and related plants.
  • Feverfew. Feverfew is another well-studied herbal remedy for headaches. The AAN ranks feverfew as “probably effective” (Level B evidence) and recommends that it be considered for migraine prevention. Pregnant women should not take this herb as it may potentially harm the fetus.
  • Riboflavin (Vitamin B2) and Magnesium. Riboflavin and magnesium are the two vitamin and mineral supplments ranked by the AAN as “probably effective”. Vitamin B2 is generally safe, although some people taking high doses develop diarrhea. Magnesium helps relax blood vessels. Some studies have reported a higher rate of magnesium deficiencies in some patients with migraine..

German doctors have been using butterbur as a prophylactic treatment for migraine with great success since the 1980s.  It is a widely recommended and known treatment in Germany and other European countries.  My neurologist may not know about this nor has she recommended magnesium to me.  She has recommended vitamin D due to low vitamin D levels being linked to inflammation.

The thing to note about butterbur is a pesky alkaloid that is toxic to your liver–pyrrolizidine alkaloids.  They are indicated on butterbur supplements as PA, and all butterbur supplements should say “PA-free”.  I note this because there was a change in a German company’s manufacturing process a few years ago, and their butterbur supplement, Petadolex, suddenly became contaminated with those pesky alkaloids.  A review and subsequent testing of the supplement revealed that the hepatoxic alkaloid compounds were still present in the supplement, and Germany removed the supplement from the market; Switzerland banned the sale of all butterbur supplements altogether.  There are, however, other companies that produce butterbur supplements other than Weber and Weber, the German-based company who failed the investigation.  Oddly enough, you can still buy Weber and Weber’s butterbur supplement on Amazon, so beware.

This is a case of throwing out the baby with the bathwater (Switzerland, I am talking to you).  Everyone in the know is aware of hepatoxic alkaloids in butterbur.  Why the American Headache Society is attempting to formulate a stance on it is beyond me unless it just doesn’t want anyone taking butterbur at all to prevent litigious action.  In the end, you need to be smart.  If our doctors have us taking a plethora of drugs in an attempt to manage our pain, then why not look at butterbur as well? Have you read the side effects of these anticonvulsants, steroids, and triptans? Nothing is very good here.

In the meantime, here is an excellent butterbur supplement that is PA-free and also contains feverfew and magnesium.  It’s wheat-free, gluten-free, and even vegetarian.

Do some research for yourself if you struggle with migraines.  There are complementary treatments.  Sometimes we have to be the ones to find them.

Further Reading:

Preventing Migraine Pain with Butterbur (great article)

Migraine Preventative Butterbur has Safety Concerns

 

An Ontological Discussion

I’m back! Where was I? My precious laptop died.  The hard drive failed.  My Mac was sent off to the Genius Bar for an entire week.  O the pain! My husband was very pragmatic about it:

“You’ll be fine.  We have three iPads.  Just use one of those, or use your phone.  You’ve got a Smartphone.”

My response?

“…..”

I feel the need to defend our possession of three iPads.  My husband works in the IT field.  He was given all those iPads through occupational opportunities.  “Show up at this event and get a free iPad!” He once went to a Microsoft roundtable discussion and walked out with a free laptop.  I don’t understand how that world operates, but I do appreciate the swag.  He was even given the MacBook Pro I now call mine.

Anyway, I am not 25.  I cannot write blog posts from an iPad.  I’m one of those old people who requires a keyboard.  Even a tiny Bluetooth keyboard.  Something!

It’s not a bad thing to go silent for a while.  I was cut off from the Internet essentially, and I was more present because I didn’t have the distraction of my shiny laptop.  So, what have I learned in the brief time that I was offline?

Milly is finally seeing a pediatric psychiatrist.  When I step back and read this I shake my head.  I have three children seeing psychiatrists.  Good grief! Is that really necessary? Remember that neighbor down the street who was gossiping about my family with other neighbors? She yelled at me from her front steps and screamed “Munchausers!”  When she emailed me later to justify her behavior, she told me that she knew that all my children were medicated; she didn’t agree with that.  I must have “Munchausers” if I’m medicating all my children.

Her obvious ignorance regarding factitious disorders aside as well as the perpetuation of misinformation amongst the women down the block, there is a valid point hidden here.  Is it good to medicate children? Grace is medicated.  Eadaoin is medicated.  Milly is medicated.  Doireann is not.

I used to think like my neighbor.  I refused to take medication myself.  My mother took so many drugs.  I didn’t want to be like that.  I grew up around myriad pill bottles.  My mother had Multiple Sclerosis, and she had a pill for everything that ailed her.  In the early 80s, there weren’t a lot of treatment options.  She also struggled with a major depressive disorder in addition to a personality disorder.  I grew up around mental and physical illnesses.  I wanted to walk a different path.  I wanted to be my mother’s foil in every way.  So, when I got my first migraine at 27 years-old, I didn’t want to take medication for it.  Surely there was a better way to manage it.

I went to a homeopath.  I went to a naturopath.  I saw chiropractors.  And, I suffered.  Everyone had different opinions as to why I had migraines, and they were all adamant that they were right.  I tried to do everything that everyone told me to do.  I never improved.  Eventually, I began to experience 20 migraines a month, and my OB practically dragged me to a neurologist.  I needed medication and testing.  I was terrified.  I hated neurologists having been forced to see them when I was younger due to a seizure disorder.  I wanted to be done.  Thus began my journey into the weird world of the brain and better living through chemistry.

If epilepsy runs in your family, as it does in mine, you have almost double the risk for developing migraine with aura.  Oh.  Well, that sucks.  Maybe I should have visited a neurologist sooner for my migraines.  I have a seizure disorder.  Migraine with aura in women causes white matter lesions which can permanently alter brain structure.  Uh…that seems important.  So, taking Excedrin for Migraine and sleeping it off isn’t a sound practice? We should not be doing that? Why? Those structural changes can put you at risk for stroke later in life.  Add an autoimmune disease like SLE to the mix and the results can be even more serious.  A migraine is not a headache.  It’s a neurological event that requires the care of a neurologist.  Not the dude at Walgreen’s stocking the analgesic aisle.

I’ve made my point, right? I was an idiot to wait so long to see a neurologist, but I was afraid.  I was afraid because I’d been forced to see neurologists before, and they were all asshats.  That’s right.  All of ’em.  Neurologists, in general, tend to treat patients like walking brains.  They are known to have a terrible bedside manner largely because they are so smart.  Neurology is a very hard speciality, and it draws the clinically-minded physician who should probably be in a lab dissecting brains rather than interfacing with humans with pulses.  I wasn’t properly diagnosed with a seizure disorder for years because my seizures were idiopathic.  A brilliant neurologist finally diagnosed me based upon posturing in my left hand.  From that posturing she knew the type of seizures I had and predicted that my EEG would be “clean”.  Up until that moment,  I felt crazy, and I was weary of being examined and sent on my way with a clean bill of health even though I knew something was wrong.

But we keep trying.  We are tenacious.  We don’t give up just because we don’t like it or because we are scared or because it’s hard.

This is what it’s like with our kids and even ourselves when we talk about mental health.  There are some horrible mental health care providers out there.  Let’s just say it.  There are! I’ve met some really bad therapists and psychiatrists.  There’s a reason One Flew Over the Cuckoo’s Nest was written.  I’ve met my share of Nurse Ratcheds and sadistic psychiatrists.  Do we let them determine our progression in life or our choices? Do we abandon our path and camp out somewhere just because we’re afraid? Do I refuse to get help for my daughters because I’m afraid of what other people will think of me or even them? Do I cower or let my daughters shrink because a few women down the block gossip about us?

One day, medication may not be the right answer for Milly or Eadaoin, and I’m open to that.  I am, however, out there in the world banging on doors.  What is going to move them up the spectrum of functionality? Three weeks ago, Milly was crying every day, overwhelmed with fear and anxiety.  Today, she isn’t.  She’s able to try to take risks.  She has moved up the spectrum of functionality.  Can she self-regulate? Well, she tries.  It took her an hour to calm down last night after a disappointment, but she did calm down eventually.  She is able to talk about her feelings with more ease rather than hide under her desk in her room.  On a very basic level, this is why we use medication in terms of treating mental health issues.  We are attempting to augment a deficiency so that we become more functional in hopes that the side effect profile of said medication will not add to our deficiencies.  While the drug is in use, we take advantage of therapy in order to learn new skills that will compensate for our natural deficiencies so that when we stop using the drug we will not feel our deficiencies as much as we did before.  The drug is a buffer and a life preserver of sorts that allows us to learn to properly swim in whatever sort of sea characterizes our life.  If our life is like choppy waters, then we must acquire the skills to swim in that.  If our life is like that of a vast ocean, then we must acquire the skills to learn to swim in that.  If we live on an island with few resources, then we have to learn to live there.

Why would we deprive our children, ourselves, or anyone else from acquiring functionality or judge someone for attempting to engage in this growth process? Why should we fear? My neighbor judged me harshly because she insisted that schizophrenia was really just caused by a food allergy.  I was the stupid one for consulting a doctor.  I had “Munchausers”.  I should have been seeing a chiropractor who specialized in applied kinesiology.  She is entitled to her opinion but not her judgments.  None of us are.  I don’t walk in your shoes, and you don’t walk in mine.  I have no right to hold your decisions against you when I don’t even know how you arrived at the space in your life that you now occupy.  I’m not privy to your deepest desires or the movements of your heart.

What I do know is that it’s far easier to judge someone than to love someone or even come alongside someone who is suffering.  But, I think that goodness is the answer for what ails us.  It will always trump judgment.

I was at a conference last year, and a speaker pondered:

“What if the problem today isn’t drugs or terrorism, unemployment or poverty but rather the lack of goodness in the world?”

It’s an interesting question, and you don’t have to agree with the conclusion.  I, however, see more and more that cynicism, criticism, anger, and fear-mongering don’t bring lasting change in my life, the lives of my children, or even the world at large.  Goodness? Kindness? Moving away from always trying to be right to attempting to understand? You may not see change right away, but, on a foundational level, it feels like a better way to move through life.  It seems like a more appropriate response to life’s weightier circumstances.  It seems like a way through when we’d really just like to go around and avoid altogether.  Life, however, can’t be avoided, can it? We must all stand and be counted at some point.  And, if we have vulnerable people depending on us to care and advocate for them, then our reasons for standing up become that much more significant.  Defining ‘goodness’ isn’t easy, is it?

Take my laptop away for a week and this is what happens. Ontology strikes again.

 

Random Thoughts during A Spring Blizzard

In which MJ has a problem keeping her thoughts to herself

It has been a long week.  We are under a winter storm advisory during spring break.  Typical.

The girls have been little super heroes this week.  I have zero complaints about them.  In fact, I figured something out, y’all.  I figured out that I could delegate.  I could ask a few of them to sort the laundry and ask another one of them to start a load of laundry.  And, you know what? They did it! Milly likes to help me fold laundry so I actually conquered the mountain range in the basement.  Laundry is my nemesis.  I hate it.  Truly.  I would rather shave the cat or stick my tongue on a frozen flagpole than do laundry.  In fact, I have actually shaved a cat in lieu of doing laundry.  No lie.

I had my MRI and EEG on Monday, and I saw an eye doctor today.  The MRI was fine, and Gene did a good job injecting the dye into my arm.  It didn’t hurt at all.  Good job, Gene.  As I predicted, my EEG was clean.  They always are.  I haven’t had a seizure in ages.  My MRI was weird, and I’m irritated with my awesome neurologist.  While there was no visible inflammation of the optic nerve, there were white matter lesions.  She didn’t say how many.  Huh.  She then said that the lesions hadn’t changed since my 2009 scan.  I don’t recall her telling me in 2009 that I had lesions.  What the heck, awesome neurologist? She told me that my chronic migraines were the cause of my white matter lesions.  Great.  I now understand why she’s adamant that I keep them under control as if I don’t try to do that.  I get about twelve migraines a month.  In a good month, I’ll get about seven.  Without the Topamax, I’d get about twenty a month so the drug does something for me.  She told me that I had to see an eye doctor as soon as possible because she couldn’t rule out optic neuritis.

Fine.  Sigh.

I saw him this afternoon.  My favorite eye doctor retired.  He was great.  The dude I saw today was just…limp.  He had zero personality and a terrible bedside manner.  He should not be allowed to interact with humans.  He should be a neurologist.

I tried my best to be charming and charismatic which just really means that I unintentionally acted like a dumb housewife.  My left eye was throbbing so I was squinting and twitching a bit.  I had a migraine earlier in the day because, you know, the odds are about 50/50 that I will have one.  Zomig, the abortive drug used to stop migraines, gives me a bit of a slur.  My hair was braided, and I was wearing my retro grape Crush shirt with pink Converse.  I think I looked and acted like a stoner.  He didn’t say one word during the entire exam.  Normally, I don’t mind the silence, but this was really awkward.  He was holding my eye open with his fingers! To be honest, I am so glad that this man wasn’t a gynecologist.  Can you imagine?

“Scoot down.  A little more.  A little more.  A little more please.”

This man must be the caller at a spelling bee in his spare time.  He must make children cry.  He calls out the words with his stony voice and then stares the children down silently when they ask, “Could you use that in a sentence please?”

Anyway, after he thoroughly molested both my eyeballs, he declared that my eyes looked healthy.  He also said that I most likely had a bout of optic neuritis.  He then very directly said, “You know that optic neuritis is strongly associated with MS.”  I immediately thought to myself that this man was in the wrong field.  He should have been a process server! I really wanted to roll my eyes, but, unfortunately, I can’t.  My left eye won’t roll up right now.  What kind of justice is that? I’ve lost the ability to roll my eyes! Here, I’ll let Tina Fey do it for me:

I told him that I already knew that.  My mother has MS, and my awesome neurologist informed me of the risks associated with optic neuritis.  It’s why she sent me to see him.  She wanted his opinion.  Optic neuritis won’t necessarily show up on an MRI particularly after a run of prednisone.  He told me that the prednisone most likely calmed the inflammation down which is why it didn’t show up on the scan.  I have to go back in two weeks for a field vision test to see how much damage has been done to my nerve by the inflammation.  So far, color is a bit desaturated in my left eye.  Red is more orange, and I still can’t focus as well as I could before the inflammation occurred.  Apparently, this is normal after ON.  ON is often a recurring condition.  I had to ask him directly what to do should I wake up one morning with an exacerbation.  He flatly said, “Call your neurologist and get an MRI.”

I don’t like him.  He isn’t very helpful.  I had to drag the information out of him.  Thank God for the Internet.  I read up on ON a ton before I even saw him so I knew what to ask.  What if I didn’t know what to ask? What if I was scared or nervous or had no access to the Internet or had little experience with uptight doctors?

Can I just say this: I do NOT have time for this!!!! I need a working eye.  I don’t need or want trigeminal nerve pain.  I don’t need or want an inflamed optic nerve.

So, I’m going to see a functional internist.  She’s the one that diagnosed my celiac disease.  She looks at the why behind the symptoms.  She’ll know what to do.  She won’t just throw steroids at me.

In the meantime, I’m starting the Paleo diet.  It’s anti-inflammatory.  Good-bye, dairy and sugar (insert pouting face).  Hopefully, I’ll feel better so that I can get back to, you know, rolling my eyes and other important things.