Free my Brain from Migraine Pain

Migraine Prevention - Early Success

Shhh... I'm whispering so the Migraine monsters don't hear me and punish me... Oh yeah, that's kind  of like believing in ghosts. But I seem to be having some success with the topamax I'm on for Migraine prevention. I have a Migraine this evening, but I've been running six to eight days between Migraines, for the last three or four weeks. For a year and more before that I had been getting several Migraines a week. So the frequency is cut in half, which makes a big difference. These are early results - I've had good 3 or 4 week stretches before, so I can't predict whether this will continue. But I am hopeful! 

I'm still on the minimum topamax dosage. I would have increased it several weeks ago but for a switch in insurance carriers making it necessary to delay the glaucoma test Dr. Gerhardstein wants me to have before increasing the dosage. Now I am happy we have taken it so slowly. Clearly my body has had a chance to acclimate itself to the medication. I am not experiencing any of the side effects I had in the first couple of weeks, either.

The biggest surprise to me is that I have more energy generally. I am not exhausted in the afternoon and evening; I feel motivated and I am getting more done. The constant low level of head pain I lived with most of the time is just gone - it seems to me that pain may have been responsible for a lot of my fatigue in the last year. The last two weekends I have done yardwork and projects around the house that I have wanted to do for ages.

There is a downside, though. It's very easy to start feeling like Wonder Woman in contrast with how I felt before. So once again I need to practice what I preach! Along with my clients, and you dear readers, I need to find that middle ground! For over five years now I have known that to have balance and well-being, to keep my energy up and my Migraines minimized, I need to pace myself. I need frequent breaks, and shifts in focus. I need time off in the middle of the day where I truly rest. I need to pay attention when I feel myself getting wired, when my blood pressure goes up, when I start moving and talking fast, when I feel the muscles in my forehead and scalp begin to contract. These are danger signs for me. Not least because I enjoy them - I like that edgy feeling of moving fast and powering through. But that energy is inevitably followed by a Migraine crash.

A few energy management tips:

1. Take a break or shift your focus every 45 - 90 minutes. If you are at a computer get up, stretch and do something else for a few minutes.
2. Take "green breaks" where you go outdoors, look outdoors through a window, look at a green plant, or at the very least look at a picture of a green plant. 2 - 5 minutes can make a huge difference.
3. Take deep breaths to slow yourself down if you feel your energy or stress level mounting.
4. Be sure to take a real break in the middle of the day - don't work through lunch.

I failed at finding the middle ground today. I got a lot done, but there's a price and I'm paying it. And so I learn my lesson again. I'm grateful to have more energy and less pain, and I'm committed to maintaining my energy by using it wisely! Let me know how you're doing with your energy today!

- Megan   

Childrens' Health Insurance Plans Sometimes Cover Parents Too

If you saw my recent post on our family's Health Insurance Headaches you know I've been doing a lot of research into health insurance options lately.  I thought I'd pass on some information that might help some of you.  In the United States, every state and territory provides low or no cost medical insurance coverage to uninsured children under a federal initiative called the State Children's Health Insurance Program (SCHIP).  The program is paid for by both the Federal and State governments, but each state administers its own program, including (within Federal guidelines), determining eligibility, benefits, and payment levels. 

The program was originally designed only to cover children, but has been extended to the parents of eligible children by a number of states.  In my state parents of children 19 and younger can qualify for free coverage if they are under a certain income guideline, and for those earning slightly more there is a sliding scale of premiums.  Some other states may require the parents to be already receiving public assistance or Medicaid.  I mention it because it is worth checking your state's rules.  So many people are temporarily out of work or their business has declined or other factors leave them unable to afford the insurance they once could. 

I hope a few of you reading this are helped - or know someone else who could use this information.  I know it's no help to those of you who don't have children, or whose children are grown, or who earn too much but still can't afford good health insurance.  I hope we have a better system soon!  If you live outside the US, I hope you live in one of those sensible countries with universal health coverage!

- Megan 

                                Healthcare clinic image courtesy of Daniel Lobo.

Is the Economy Hurting your Head?

As you know from my recent posts, the costs of health care and our national tragedy of a broken health insurance system have been hitting me where I live lately. Of course I'm far from alone in this. In the current economic crisis, people are finding it harder than ever to afford the medications and health care they need.  In a study published on October 14, the National Headache Foundation (NHF) surveyed 270 headache sufferers on line recently, and found that more than three quarters of the respondents said they have cut back financially, and those cuts have impacted their headache treatment:

63 % admit they rely on prescribed medications for their headache.  However, since the economic decline, 29 % have either delayed or skipped filling prescriptions for headache medications due to financial set-backs.  Another 53 % switched to over-the-counter medication instead of their prescription medication to treat headache in an effort to save money.

Migraineurs are not alone in this, of course, the New York Times reported last week that prescription drug sales are down, and people are cutting back on life saving medications for many medical conditions.

The NHF’s survey also found that people were cutting back on certain types of food purchases, and were not sleeping as well and feeling more stress due to their economic situation.  Sleep disturbances, anxiety and dietary changes were all cited as triggering increased headaches.

Delaying or skipping filling prescriptions, or using over the counter medications as a substitute is a serious concern.  It’s easy for me to say to you – don’t cut back on prescription medications!  Find something else to cut back on!  If the choice is between snack foods and prescriptions, definitely give up the snack foods.  Unfortunately, many of my prescriptions have a $50 co-pay.  I could save a lot more money delaying a $50 co-pay than going without a $3.89 box of donuts.  Sometimes we are faced with real, terrible choices.  Sometimes we have to choose what to do without, and there may be no truly right answer.  I will not presume to advise you here - you must make your own choice.

Some economic insecurity is very real.  Some people lose their jobs, can't get loans, lose their investments, don't have health insurance, and have to make terrible choices.  Please ask yourself whether you really need to forgo this expense, or whether it is just anxiety and fear for the future that is making your decision for you. 

The NHF has some suggestions for ways to afford your prescriptions:  

• If you are unable to afford your medication, many pharmaceutical companies offer patient assistance programs. Talk to your doctor or visit the NHF Web site (www.headaches.org) and click on Headache Education-Tools for Sufferers for a list of available programs.
• Talk to your doctor about your financial situation; there may be a generic form of your prescription available.

Beyond the nuts and bolts of paying for the prescriptions, though, you need ways to manage your stress and anxiety.  I suggest snuggling a kitty if you can.  NHF has some good advice, picking up on some familiar themes here at Free my  Brain, they suggest you practice relaxation techniques and include exercise in your daily routine.   Suzanne Simons, NHF Executive Director, concludes with a great piece of advice: "remember that the financial turmoil we are currently experiencing is temporary. ...[T]he situation will get better and keeping a positive outlook may help lessen the emotional and physical impact of these volatile economic times."

Remember that economies are affected by attitudes.  Refuse to give in to despair.  Do whatever you can to make things better.  And get out and vote for change!

- Megan Oltman

                              

Hand on head image courtesy of Mr. Thomas/Christopher.

We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com

Migraine Preventive Medication: Move it on up Slowly

 Most medications in use for Migraine prevention have a number of side effects, and many, if not most, migraineurs are sensitive to medications and their side effects.  Topamax, which I am currently using, is used successfully by many and considered to have intolerable side effects by others.  Some months ago I read Teri Robert's report on Dr. Stephen Silberstein's (of the Jefferson Headache Center) recommendations for a gradual increase (titration) schedule on My Migraine Connection.  You can read Dr. Silberstein's Topamax Recommendations here, regarding how to slowly increase the dosage.  He observed that "proper dosage and titration (tapering up the dosage) is essential for successful use of Topamax." 

Being naturally rather suspicious of medications, I went into my headache specialist with this information, and asked that we titrate slowly.  I was pleased to discover that Dr. Gerhardstein takes an even more cautious approach than I do.  At this point I have been on the minimum dosage for about a month. I saw Dr. G in New Brunswick again this week and he wants me to have an eye exam to rule out glaucoma before increasing the dosage. I have that scheduled for next week. Assuming that exam result is okay (no reason to think it won't be), I will go to 50 mg daily after that.

I asked Dr. G about instituting an increase schedule after that point and he told me he doesn't want to go on a regular weekly or bi-weekly increase schedule because it is easy to "blow right past" the minimum effective dose that way. He said he thinks many incidents of intolerable side effects may be from being on too high a dosage. The plan is for me to try each increased dosage for about 3-4 weeks and then call him to discuss. He wants me to keep a detailed diary and stay very aware of my body's reactions.

I really like this approach. I know we are all impatient for results, no one wants to stay in pain and with the disruptions of frequent Migraines. But I think this way I can minimize side effects and have the most control and awareness over what is happening in my body.  If more side effects are experienced on higher dosages, and we could end up on a higher dosage than we need by not giving each level a  long enough try, maybe a very slow titration increases our chance of finding the level that is optimum for each of us, with the best balance of Migraine prevention to side effects.  In the meantime, we can be listening carefully to our bodies and observing their reactions.

- Megan Oltman 

                                Ocean daybreak image courtesy of Hideyuki Kamon.

We've moved! Come over to our new site www.freemybrain.com for new content on managing life with Migraines and chronic illness.

Testing for Medication Allergies

Long story ahead.  I've been trying to get tested to get more information about the specifics of my medication allergies.  I'm allergic to ibuprofen, likely all aspirin derivatives (NSAIDs) and possibly also acetominophen. Long story which you may have read here, 2 near-death anaphylactic reactions to Advil, hives from Tylenol, swollen lips from an aspirin-based product, yada-yada.

My allergist suggested at the time (nearly 6 years ago) that since all these reactions happened within a few months, when my system calmed down I might not be allergic to everything. But said allergist would not do challenge tests on me for the medications for fear of liability, and she was also a screaming nasty unprofessional person whose sorry butt got fired.

Lo, 5+ years of living without these meds later, my headache specialist would like me to get tested for aspirin and acetominophen to see if we can expand my available Migraine medication options. My primary doctor told me 6 months ago that he thought he could do such a test in his office. The idea would be that I would actually ingest a small controlled amount of the drug in question and the staff would stand by to save me if I started going into anaphylaxis. Sounds like fun, no?

So last week I went to talk to my primary doctor about doing said challenge tests in his office. He discussed it with me in more detail. He wanted to find a less dangerous way and proposed testing my blood for antibodies to the chemicals involved. This indicates whether there is a sensitivity, but I asked him, "Does having a sensitivity tell you whether the body would react anaphylactically?"  He went off to research it and concluded that no, it wouldn't. I just got a call back from his nurse saying there was no way to test except the "old-fashioned" challenge test, and they felt that could only be done in the hospital with a crash cart. So I should find an allergist who would admit me as an inpatient and do the test in the hospital.

Is this back to square one? I'm imagining calling allergists' offices and saying, "hi, I'm looking to make an appointment see if the doctor would be willing to put me in the hospital, give me something that might kill me and then stand by to save my life! Oh and by the way, I really am counting on my life being saved! Want to take me on as a patient?" The fact that I am about to switch insurance makes this all more complicated.

 I'm actually going to call Dr. G (headache specialist) and see if he might think an allergist associated with his hospital would do it. At least then it would be one doctor asking it of another instead of some crazy-sounding patient?

I'm not particularly upset here or anything, just kind of rolling my eyes. Nothing's ever simple, is it? It's a wonder any of us ever have time to do anything other than wade our way through our medical issues!

- Megan Oltman
Still living aspirin-free!

                                Aspirin image courtesy of Ritcharnd Moskow; magic pill image courtesy of [O*] 'BharaT; map-maze image courtesy of David Bleasdale.

Topamax Trials

Just a quick update on my trials of/on Topamax.  No tribulations so far, knock wood (picture me  knocking on my head.)  I've just finished my third week on the minimum dosage.  This is too soon to tell whether it is working as a preventive.  I have had 5 Migraines in those 3 weeks - which is on the low side of average for me, but three weeks is not a good sample - any given three week period could be better or worse.  More to the point I may need a higher dosage for full effectiveness, and the medication takes some time to build up in the system.  

Topamax is an anti-seizure medication, originally developed for the treatment of epilepsy.  Its Migraine preventive effect was discovered in some epileptic patients who were also Migraineurs.  It is currently one of very few medications actually approved by the FDA for Migraine prevention, all of them originally developed for other purposes.  There are 100 other medications that have been effectively used to prevent Migraines; Topamax is not the only game in town.  It may be the first some doctors try, since it is fairly well known, but unfortunately also has a high side-effect profile.  For people who are sensitive to medications, as are many Migraineurs, this is a dilemma.

Typically people feel tingling in their fingers and toes, less often in the lips and other places.  I emailed my doctor after about a week on the stuff when I was having intense itchy tingling in my lips and nose, tongue and TEETH (who ever heard of itching teeth?), top of my scalp, behind my ears, my kneecaps, elbows, ankles, tops of my fingers, outsides of my thighs, shoulder blades, upper eyelids. It kept waking me up one night.  I was worried that this might be an allergic reaction.  Dr. G emailed back that unless there was a rash, it was probably not a problem.  I had no rash and the tingling disappeared the next day. 

The other side effect I was most concerned about was mental cloudiness.  Some people have reported so much mental fog and forgetfulness that the drug has earned the nick-name Dopamax!  I've had a little trouble with finding the right words, but that seems to be passing.  I've found that my ability to multi-task, or keep a sequence in my mind is somewhat impaired.  I have to concentrate harder, write more lists since my ability to make a mental list is less than usual. 

 I've been pretty sparse with the posts here the last few weeks and I put that down to adjusting to the new medication.  I am lucky that I'm not spacier still.  After nearly 50 years you get used to the way your brain works, and to find your thinking change is a big adjustment.  It's like re-routing around road work.  I've always had a good internal GPS system, but these days I have to pull out a map.  And check it again every few minutes.      

- Megan

                                Block head image courtesy of Stefan; road work image courtesy of Hubbers.

We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com

Between a Rock and a Hard Place - How do We Choose?

The first in a series of posts on Migraineurs making choices for our health care and our lives.

How do we choose?  We are faced with choices on a daily basis. We lose sleep over them; they feel momentous, life-changing.  Rarely are they an Indiana Jones moment:

1. if I step on the wrong step it will crumble below me and hurl me into the rat/snake/cockroach infested pit, or
2. if I stake all on drinking from the gold cup my eyeballs will melt and I will desiccate into a human husk, so that the 2000 year-old crusader can say “he chose unwisely.” 

Most of our choices change our lives more gradually!

For those of us with Migraine disease and chronic illness, choices often revolve around

1. what treatments to try, and
2. how to manage to make our living.

Most choices in life are reversible; we can change our minds, have a chance to learn from our mistakes.  Usually there is no one clear right choice.  In medical situations we often wish there was one.  How about the doctor coming to us and saying, “Well, Ms. So and So, here’s the choice 

1. If you take this course of treatment it will cost you $2500 and you will feel worse for 2 months, 3 days and 16 hours, but then you will lose 30 pounds, become a natural blond, your Migraines will cease forever and you will never age another day.

 2. On the other hand if you don’t take the course of treatment your fingers will gradually turn to pretzel sticks and crumble away, your brain will become a giant chicken heart and eat Philadelphia, your best friend will never speak to you again, and you will have a Migraine every day forever.” 

I don’t know about you, but I’d go for the treatment.  And I don’t even want to be a blond!

Okay, I’m being extreme.  I hope I didn’t lose you there in all my silliness; there really is a point.  It is rarely given to us to know whether we are making the right choice, before, during, or after.  We have to weigh our options, but then we just have to choose. 

Before I had my first child I fell and herniated a disk in my low back, causing two years of back pain.  Then I had a difficult labor with an erratic pattern of contractions, wearing me out without making progress.  After 18 hours of labor, I chose to use pitocin, a synthetic hormone, to stimulate the labor, and the pitocin made the contractions strong and painful enough that I felt I needed anesthesia.  I had to choose between taking pain-killers and having an epidural (where anesthetic would be injected into the dura, or sack, around my spine).  With an epidural there was a chance that my disk problem could become worse, even to the point of permanent back pain.  With pain-killers, if I ended up with a cesarian section, I would need general anesthesia.  The choice was to be awake for my daughter’s birth and risk disabling back pain, or to risk being knocked out for her birth with no back complications.  I chose the epidural.  I did have a cesarian; I was awake; and I did not develop any back problems from it. 

My husband and I will never forget when I was lying in the birthing chair, pitocin-induced contractions sending me into ever higher spikes of pain and exertion, trying to make a choice in the panting moments between.  We were 31 years old, and we felt like we became adults in that moment.  If I had ended up with disabling back pain, I don’t know if I would have said it was the right choice.  To be awake and hold Rachel in the moment after she came into the world was a joy I did not want to miss.  That was what I chose.  But who can say if it was the right choice?   

The choice I made recently was to start on Migraine preventive medication.  I spent at least 6 months making that choice.  It was a choice I was considering for at least 4 years.  Sometimes a choice needs to stew on the back burner of our minds.  In that 6 months I:
•    Found a doctor I could trust (which took several tries and months of waiting for appointments);
•    Did a lot of on-line research, and read about other’s experiences with preventives;
•    Recommitted to my meditation and relaxation program;
•    Tried magnesium and B2 supplements;
•    Tracked my Migraine numbers; and
•    Talked about the decision with my friends on and off line, my husband, my family.

Eventually, the choice just felt clear. 

I will be returning to this subject of choosing in several more posts in the near future – if you’ve read all the way down here I’ve kept you too long already!  What I’ll leave you with today is to say that those times when you must make that life-changing decision right now are rare.  We usually have some time to make our choices.  Use that time.  Let things simmer on the back burner.  Let your subconscious mind do its job.  Will you make the right choice?  Nobody knows.  But you can make the choice with much less anxiety in the meantime.

- Megan Oltman

                                Pretzel sticks image coutesy of Windell Oskay; image of window at Mesa Verde is by me to illustrate being between a rock and a hard place - Mesa Verde is all rocks & hard places.  And amazing.

We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com

Blog Carnival - Improving Doctor Patient Communication

Just in time for my Migraine specialist visit next Tuesday, Diana Lee has posted the September Headache Blog Carnival - Tips for Improving Doctor Patient Communication over at Somebody Heal Me.  I'm going to have a lot of reading to do!

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on improving doctor patient communication.

- Megan Oltman

When is it Time to Use Migraine Preventive Medication?

When is it time to use Migraine preventive medications?  It has been a difficult decision for me, as it may be for many of you.  There are clear medical guidelines, and recent research that backs them up.  And yet it is not an easy step to take.

3 or more Migraine attacks per month

Headache specialists will generally prescribe Migraine preventives if you have 3 or more Migraine attacks per month.  My HA doctor told me his guideline is one per week, on average (which sounds very much like 3 or more per month).  If you think about it, a Migraine every week, or nearly every week, is a threshold level for having a serious disabling impact on your life.   Every week you will lose hours or a day or more to pain, photophobia, nausea, whatever package of symptoms you tend to have.  You will miss work, family time, social time.  You will waste hours in a darkened room.

Silent Brain Damage

There's more to it than the impact on our daily lives.  Recent research shows that Migraine attacks at a frequency of 3 or more per month, over an extended period of time, leads to brain damage.  The evidence is now very strong that Migraine is a progressive brain disease; it worsens over time.  The more frequent, and longer time since onset of Migraine attacks, the greater risk of damage.  The damage shows up as lesions in the white matter of the brain.  The researchers called it "silent brain damage" because there are no known effects of this damage - yet. 

Teri Robert, author of Living Well with Migraine Disease and Headaches, discussed the implications of this research in her recent article on My Migraine Connection,  "Yes, Migraines can Cause Brain Damage."  Teri gives us an excellent explanation of the research, concluding that:

Migraineurs who experience frequent Migraine attacks and / or have a long history of Migraines are at increased risk of "silent brain damage," brain damage that (so far) does not seem to cause any symptoms. This again shows that reducing the frequency of Migraine attacks (aka Migraine headaches) is critical. 

So why wouldn't you go on preventives?

I have averaged 7 Migraine attacks per month for the last 9 months.  I have been considering preventive medication for the last 8 months.  My hesitation comes from:

• a reluctance to take strong medications that will affect my central nervous system. 
• a history of being sensitive to medications and their side effects.
• a desire to take a natural approach to caring for my health.
• the fact that I had a 50% reduction in Migraines a few years ago from regular relaxation practice.
• the fact that there are no medications that were developed specifically for Migraine prevention, which seems to often lead to the need to try many different medications to find the one (or combination) that works for a particular person.
• the sense that it's easier to deal with the devil I know (Migraine attacks) than the devil I know not of (medications and their side effects).

I suspect that many of you who are reluctant to try preventives have some of the same reasons.  Please do leave a comment to share your thinking.

I will be starting preventive medication in less than two weeks when I next see my headache specialist.  I believe in a holistic approach to dealing with Migraines, including (among other things)  relaxation, meditation, rest, exercise, physical therapy, massage, diet, trigger-avoidance, and appropriate use of medications.   At this point, preventive medication is appropriate!  I need to stop losing 6 - 9 days a month to Migraines. 

I have my hesitations about the "better living by chemistry" theory.  I think there are inherent conflicts involved in our pharmaceutical production being governed by a profit motive.  However, that does not mean that drugs don't save lives and prevent or mitigate disability.  We need drugs available, and we need much better choices in drugs than we have now.  Holistic approaches can reduce Migraine frequency, they can help, but cannot change our inherent neurological make-up.  I use supplements and diet to care for my overall health, but if I got appendicitis you bet I would go willingly to that surgeon.  Knowing that I am at risk of brain damage, you bet I will take the drugs that reduce that risk. 

- Megan Oltman
Embarking on the pharmaceutical unknown.  Wish me luck!

                         Pill image courtesy of [O*] 'BharaT; brain image courtesy of Gaetan Lee.

We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com

Can Crying be Bad for You?

I believe firmly that it is good to express our emotions, rather than suppress them.  Sometimes we just need to cry.  Crying on a friend's shoulder.  Weeping at a funeral.  I've had several such completely appropriate crying occasions this summer.  Both times I got Migraines.  Today I have a sinus infection.   It's a crying shame!

I am speculating here, and make no claims to scientific accuracy in this post.  I'm wondering about the physiology of crying.  It's more than just salty water running down your face.  I don't know if anyone really cries like they do in the movies, or in literature, delicate trails of tears, without anything swelling, nothing disgusting.  I've certainly never been able to achieve that.  For me, crying involves swollen nasal passages, a red blotchy puffy face, a fountaining nose.  Altogether much yuck.  Crying is a well-known Migraine trigger.  I suspect the good old trigeminal nerve must be involved - it runs right through and controls all the regions involved in a sob-fest.  And then it must get irritated, and set those neurons on their merry way, doing their haywire Migraine thing.

I don't know if I can explain the sinus infection this way, but I'll try.  I'm not suggesting spontaneous generation - there must have been an infectious agent.  Who knows what rhinoviruses lurked at the airport, on the plane, in the rental cars, in the colleges and even friends' homes we visited.   But I suspect that my crying must have swollen passages and shut down my tiny sinus ducts, trapping some opportunistic organisms, backing things up and leading to infection.

Yesterday I attended a very sad memorial service.  A friend lost his wife - a bright, funny, lovely woman of 37.  Witnessing his pain, and the pain of her parents and siblings, all of her friends, his friends...  Well there was much weeping.  Completely appropriate weeping.  I felt knocked out for the rest of the day, and by evening I had a Migraine, my throat was sore and my sinuses were doing their nasty thing.  Today I think the weeping is still going on - just inside my head rather than on my face.

Like so many things that can trigger us, crying can't be avoided.  It's part of life.  Probably I would have gotten this infection anyway.   So I will remember LM from my bed today, drink lots of tea, take my vitamin C and zinc and magnesium, and hope this clears up soon.

- Megan

                                Crying clown face image courtesy of Prakhar Amba.

We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com