learning to ask for help

DF and I recently went on vacation to Charleston SC for a week, which marked the official start of our wedding planning. We had a great trip. The first half we spent with my mom and sister; after they left, we had three days to ourselves to play tourist. I actually felt fairly good during vacation. I still had the daily head pain from my Migraines and IIH, but I paced myself and practiced good self-care, and was able to enjoy our vacation - even if a lot of it was spent in the condo we stayed at.

When we came home last week, the real world seemed to crash back into place around us. All the stress we had been ignoring about unemployment, finances and everything else hit hard. I realized - on the plane ride home, in fact - how much my Anxiety has gotten out of control over the summer.

Like many Migraineurs, I struggle with a number of comorbid conditions: Migraines, IBS and mood disorders (namely Anxiety and Depression). I've struggled with bouts of Depression in the past, particularly during my third year of college when I first got sick. Even after my Migraines and IIH were successfully treated, the Depression stuck around for a long time.

It's no secret to me that this has been a difficult summer. DF and I have not been able to land "real" jobs after being laid off last November. Between our paychecks and unemployment checks, we're making ends meet and aren't in any immediate danger, but everything feels very precarious. My health has only just started to improve from the very low point of last year. I've been dealing with a triple whammy, in a sense, of my unemployment, DF's unemployment and my crummy health.

This summer has marked a vicious cycle of Anxiety-pain-Depression-Anxiety that I just cannot get out of. The Anxiety about all the life stresses feeds my pain, and the pain in turn feeds my Anxiety. While I'm having less pain overall (thanks to the acetazolamide for my IIH), I still have not had any break in my pain in several years, and I still have a long way to go to find an effective treatment regimen.

I saw Dr E for a follow-up appointment on October 1, the day after DF and I got home from vacation. As I sat in the waiting room writing down last minute questions, I wrote a note about my Anxiety. It was serendipitous that my appointment with Dr E was right after vacation, when I realized how much I've been struggling, so I was willing to bring up my concerns. Anxiety and Depression are hard things to talk about, even with a doctor whom I trust.

In fact, I have spoken with Dr E about this same issue in the past, which made it easier to bring up this time. When I saw him in February, we discussed my Anxiety as related to unemployment; at that point neither DF nor I had any job prospects on the horizon. Dr E prescribed a low dose of citalopram (Celexa), though I never started taking it since I did find a job not long after my appointment.

But now I find myself stuck in the same position. And it's just tiring to feel all this emotional upheaval on top of my regular physical symptoms. I feel so frustrated by the constant pain, the daily dizziness and nausea, that I often just want to scream. The longer all of this stretches on, the harder it becomes to cope.

Dr E wrote me a new scrip for the citalopram, leaving it up to me to fill it any time after the appointment if I felt ready for it. (He understands and respects my reluctance to try new medications after a series of really bad reactions.) I decided earlier this week to get it filled, and will be starting it next week. And I'm nervous about it.

It's so difficult to ask for help because it can be so difficult to admit to myself that I need help. I can't think myself out of my mood disruptions any more than I can think myself out of my Migraines. While I can do relaxation exercises and other non-drug therapies to mitigate my symptoms, they will not change the underlying chemical and neurological problems. So Monday evening, I will take my first dose of citalopram and hope for the best.

I'm learning, once again, how to ask for help when I need it, and trying not to feel like a failure for needing it.


Be well,
MJ

radio silence | part 1: another acronym, another diagnosis

Well, hello there, everyone. I'm hoping to get back into more regular updates, and in the meantime, I hope to catch you up a bit on what's been happening in my corner of the world.

When I saw Dr E in February, he prescribed a low dose of Celexa (citalopram) to help with the anxiety and depression I was dealing with because of life stressors (namely, unemployment) and my health. Celexa is also used as a Migraine preventive, so we were hoping it would help in the head pain arena, as well. I spent a few weeks trying to gather my courage enough to swallow that first pill, and in the meantime, found a part-time job, so I never did try it.

During my follow-up visit with Dr E in April, he asked me where I wanted to go with my treatment. I had seen some success with Dr P, and obviously I was feeling skittish about trying new prescription drugs. So I brought up an issue that had been simmering in the back of my mind for over a year - are my vague symptoms actually due to Idiopathic Intracranial Hypertension? I certainly have at least mild head pain every day, with dizziness; as well as unexplained Migraine attacks, nausea, shoulder and neck pain, and tinnitus. Dr E and I had discussed this when I first saw him in 2008, and we had decided to try a few other treatment ideas first before further exploring IIH.

When I brought up IIH again, Dr E agreed that we had come to a point in my treatment where it made sense to test for it. He scheduled me for a lumbar puncture at the end of April. The procedure itself was fairly straightforward (though massively anxiety-producing) and I found out that my pressure is higher than normal. I ended up with a truly terrible spinal headache after the LP that left me completely bed-bound for a week, but I was able to get a blood patch to treat the headache.

While I'm certainly not happy to have another thing wrong with me, getting diagnosed with IIH has opened up my treatment options. Dr E prescribed me a very low dose of Diamox (acetazolamide) to reduce my spinal fluid pressure. I've been taking it since May, and just increased my dose a month ago, and I'm already seeing some positive effects. I'm tolerating it better than the other prescription preventives I've tried, so all in all, the LP was worth it.

I still have a long way to go in finding an effective treatment regimen, but adding the Diamox to treat my IIH has been an important step. I'm having less overall head pain, fewer Migraines and less severe Migraines. Every little bit helps, so I'm glad I followed my instincts and discussed IIH with Dr E.

More to come...


Be well,
MJ

your help requested: Team Eye and Ear

I'll be going off the topic of Migraines today to raise awareness for another cause close to my heart.

Two of my family members are running the Boston Marathon this spring. They are fundraising for Team Eye and Ear, the charity team for Massachusetts Eye and Ear. So far, they've done an excellent job of raising money toward their goal, but I'm asking all of you dear readers to consider a donation to their team.

Why did they pick Team Eye and Ear? On their fundraising page, they explain:

Monica had sudden vision loss as a teenager caused by a degenerative cornea condition. Her doctor at the time told her she would eventually lose her sight in one eye and would need a cornea transplant. After moving to Massachusetts in 2001, Monica came to Mass. Eye and Ear to get a second opinion and transfer her care to our doctors. Her doctors and the staff at Mass. Eye and Ear gave her hope, telling her that she would not necessarily lose her vision and that there were things she could do to help prevent it. Monica explains, “Going to a world class institution and seeing the doctors who are really aware of and involved with cutting-edge research has made such a difference in the care I’ve received, and I want the opportunity to give back by raising funds to help continue that research.”

Please take a minute to check out their fundraising page and consider donating. Even $5 can make a difference!

Thanks, everyone!

More about Massachusetts Eye and Ear Infirmary.
More about the Boston Marathon.
Donate here.


Be well,
MJ

courage

I went to see Dr E on Thursday afternoon for a follow-up appointment, and even though there was some confusion (they had canceled my appointment but forgot to call me), Dr E and his PA worked me into the schedule since I was there.

The appointment went very well. We went over the success I've been having with Dr P's regimen. My pain levels are significantly lower than they were a few months ago, and December was actually a very good month. Unfortunately (and I explained this to Dr E) the stress of unemployment has hit me harder in the new year, so I'm back to frequent days where my pain is 5+; I went from 12 such days in December to 27 in January. I know that the stress and anxiety are exacerbating my Migraine pain/symptoms and IBS.

Dr E suggested I add a low dose of Celexa (citalopram) to my regimen to help deal with the anxiety and depression related to the unemployment situation, since the emotional upheaval is having such a negative effect on my head. He specifically suggested Celexa because it has a low side effect profile and has seen success with it in his patients (and few side effects). He remembers well the trouble I've had in the past, so he's starting me on a very low dose. He thinks that the Celexa will probably be a temporary thing to help me get through the unemployment stress, so I may try going off it when the job situation changes.

We also discussed my current triptan, Amerge, which usually works pretty well for me with few side effects, but can take 3 or 3.5 hours to work. I'm keeping that as an option, but he also gave me a scrip to try Axert.

Overall, it was a very good appointment.

I finally picked up my scrips for both drugs yesterday afternoon, but I hadn't quite worked up the courage to try the Celexa last night. Those of you dear readers who have followed my blog for a while may remember that I've had some very strange and severe reactions to meds, most recently Lyrica and even Botox. After my double reaction to the Lyrica and Botox last fall, I told Dr E I wanted a complete break from any prescription preventive meds for a while, which was when he referred me to Dr P. I feel I've made great progress with my new regimen so far, though I still have some way to go.

So tonight, I'm going to try the Celexa. I make it a point not to read the potential side effects on the pharmacy leaflet myself; instead, I read all of the other information and have DBF read about the side effects. This method has worked well for me in the past.

It's still scary, though. These are powerful drugs we take to try to address our Migraines, or, in this case, my anxiety and depression. I can say I would not be as ready to try the Celexa if not for Dr E; without even looking at my chart he remembered the severe reactions I've had in the past. (He once mentioned to me that I redefine medication sensitivity and he would have to be extra cautious in my case.) The headache specialist I saw before Dr E never would have understood this, or have been willing to individually tailor my treatment.

Chronic illness requires a lot of courage: courage to continue on through pain and sickness; courage to try new medications; courage to face the unknown, trial-and-error nature of our treatments. Tonight, I will screw my courage to the sticking-place and try a new drug. Hopefully, it will make a difference in my emotional state and help my head to calm down.


Be well,
MJ

reforming healthcare to make pain less invisible

When DBF and I were laid off at the beginning of November, one of our immediate first concerns was continuing to afford treatment for my Chronic Migraines. Any regular reader of my blog knows that I haven't yet found a successful treatment regimen to manage my Migraines, though I have been working hard for several years now.

I was very fortunate at my last job to have very good health insurance coverage. My former employer did not charge employees for the basic level of insurance (which included medical, dental and vision). Our prescription plan was only two-tier. Compared to many other chronic illness patients, I was incredibly fortunate to have such great coverage. Even still, it cost me hundreds of dollars a month out-of-pocket. Now, add the cost of my COBRA coverage, and a month's worth of unemployment checks just barely covers a month's worth of treatment costs.

It's no big secret that healthcare is in dire need of reform. Many of us particularly tied to the medical industry - whether we are healthcare providers, chronic illness patients or caregivers - perked up when soon-to-be President Obama emphasized the need for healthcare reform. Cynicism aside, it's reform our country desperately needs.

Before I go on, I do want to mention the importance of universal, affordable healthcare and an effective "cure" for the shortage of primary care physicians. These topics have been written about extensively across the blogosphere, so I won't dedicate much space to them here, other than to say that they are hugely important and difficult tasks to accomplish.

But, beyond these issues is another that cannot be ignored: effective treatment for chronic pain.

According to Rest Ministries, nearly one in two people in America live with chronic illness, and 96% of illness is invisible. Many of these chronic illnesses come with pain. Pain, by its very nature, is often impossible to ignore, extremely debilitating and invisible to those not experiencing it.

This invisibility is particularly problematic when it comes to medical treatment. A familiar story: a Migraineur who finds herself in Status Migrainous, after 72 hours of pain with no relief, dutifully goes to the ER to get the Migraine broken. She knows the increased risk of Stroke after a prolonged Migraine and, per her doctor's orders, goes to the ER. Despite her doctor's treatment protocol (well documented in her records), she is treated like a drug seeker and sent home without breaking the Migraine.

Unfortunately, it has fallen to Migraine (and other chronic pain patients) to address this problem. Teri Robert, a prominent advocate for Migraineurs, has developed and freely distributed a set of ER forms for Migraine patients, in an attempt to get around the dreaded drug seeker label. Many headache specialists will do what they can to help patients get around this obstacle to the care they desperately need. Yet Migraine support groups are full of stories of poor treatment at the ER.

Let me make it clear that I'm not blaming ER doctors for this very real issue. All too often, drug seekers do go to the ER to get narcotic hits. Because pain is invisible - at least in the case of most chronic illnesses - it's hard to tell just by looking at someone if they are, in fact, experiencing a severe pain flare. The drug addicts, DEA and "War on Drugs" have combined to put chronic pain patients in a difficult position. Doctors are reluctant to prescribe pain medications to patients who legitimately need them; those medications, if prescribed, are often underprescribed; and breakthrough pain is a very real problem that chronic pain patients dread. All too often, that puts us in the hands of ER doctors.

But what if it didn't have to be that way?

I ask the Obama administration to work with the healthcare industry to find a solution to these problems, specifically:

1. Better treatments for Migraines and other chronic pain;
   
2. Appropriate prescribing of existing and new treatments;
   
3. Individual treatment protocols for patients to address breakthrough pain; and
   
4. Access to necessary emergent care for breakthrough pain (and in the case of Migraines, Status Migrainous).

Not being a medical professional, I don't have good solutions to these problems. But I firmly believe that we have an unprecedented opportunity for doctors and patients to work together with the Obama administration to address these problems. More funding of the NIH for research into chronic conditions is an important first step. Beyond that, it is up to all of us with a stake in the medical industry to work together and develop a plan of action.

The skeptical side of me sees this much reform as impossible to achieve. But the optimistic side of me is reaching out to all of you. Patients can't do this alone. Doctors can't do this alone. Nurses can't do this alone. But together, just maybe, yes we can do it.


Be well,
MJ

returning to the complementary medicine fold

I posted earlier this month about the options that Dr E gave me regarding my treatment, mainly to try another Migraine preventive, or to go see an herbalist. I decided to take the referral to the herbalist, Dr P. I did not feel mentally ready to trial another preventive med, and I wanted to make sure I was getting the most out of my supplements before I add on prescription meds.

My appointment with Dr P went very well. She spent about an hour with me and gave me a lot of information and ideas.

She thinks that a lot of what's complicating things (and contributing to the strange med reactions) is emotional overload. She did not mean that Migraines are purely an emotional problem; more, she recognized the complex relationship between Migraines, Depression and Anxiety. She thinks a big issue for me is that I don't just allow myself to feel without analyzing - the curse of being a therapist's daughter. I'm very good at figuring out why I'm feeling the way I'm feeling, but not so good at just letting myself feel it. Instead I think about why I'm sad and figure out the reasons for it, but don't let myself just feel sad without the "why". I don't like showing emotions in public, especially at work, so I tend to keep that lid on all the time.

Her main recommendations are that I do some "bodywork" to help put myself more back in touch with my body. She also thinks I need some space to just express emotion without analyzing it. Specifically, she wants me to retry acupuncture, and add massage therapy and dance therapy. I tried acupuncture last year, and while I had some success with it, I felt dissatisfied. She mentioned that the success of acupuncture depends not only on the techniques, but also how the patient "clicks" with the practitioner. This makes a lot of sense, as it holds true for any doctor-patient relationship. Complementary medicine practitioners are no exception.

Dr P had specific referrals for both the acupuncture and dance therapy, and I have a place very close to my office that does medical massage therapy and takes my insurance. While the dance therapy idea seemed a bit strange to me at first, after thinking it over I'm willing to give it a try. When I was younger, I took dance classes (age 4-16) and it was a big part of my life. Dance was my main form of stress relief, and it was very effective. So getting back into dance makes sense, and why not try a more freeform kind. Dr P recommended I try Nia dance, so I'm working on finding a class nearby that works with my schedule. I love the whole philosophy of Nia, and it draws from several movement forms I've practiced in the past, including modern dance, yoga and tai chi, among others.

On top of that, she also changed up my supplements. She had a specific brand she wanted me to change to for my multi, C and B2, and replaced my chelated magnesium with calcium-magnesium. She also added CoQ10 and Petadolex, as well as a live culture form of acidophilus (Primadophilus Optima) for my IBS. She wrote down specific brands and dosages for all of them.

This sounds like a lot of changes at once, and it is, but she thinks I may be better served by doing this at once rather than one thing at a time. She explained that with the holistic therapies, often one thing won't work, or even a combination of five things won't work, but adding a sixth or seventh thing is what allows everything to work together. So by changing my supplements, and adding acupuncture, massage therapy and dance therapy, we're hoping to see some improvement. She (like me) doesn't expect a miracle cure, but hopes this will at least start improving things for me.

It was a lot to think about and absorb. I like Dr P a lot. She seems to have a good balance between western and eastern medicine, recognizing the benefits and flaws of both. I feel good about her recommendations, and like the idea of trying a more holistic approach before I go back to medications. I don't expect this treatment plan to be a magic fix, but I am optimistic that it will help. I see Dr P for a follow-up appointment in 2 months, right at the beginning of January.

I have started both the acupuncture and massage therapy and hope to try a Nia class on Saturday; I will post about all of these in the near future. I've only been following my new treatment plan for a few days, but I can already tell a slight difference in my energy level. I feel more optimistic about this than I have about anything health-related in a long time.

Be well,
MJ

a long-overdue update

I'm ba-ack!

It's been a truly difficult few weeks for me and I hadn't felt up to posting. But it feels like maybe things have leveled out a bit, so here I am.

I posted a few weeks ago about needing to recover after a combination of Botox and family visiting. I thought I was in the clear, but the past few weeks brought worse.

The Botox reaction lasted longer than a week, and combined with a bit of withdrawal from the Lyrica to make me pretty miserable. I started having some weird symptoms, namely irregular heartbeat and tremors, which prompted my headache specialist to send me back to my PCP. I saw the NP at my PCP's office, who ran a full panel of bloodwork and had me wear a 24-hour holter heart monitor to see if we could discover anything. The bloodwork came back normal, and the holter didn't find any "documentable correlation" between my symptoms and my (very regular) heartbeat.

All of the testing and results took about 2 weeks. During those 2 weeks, the Depression and Anxiety that have been creeping up on me started to take over my life. I hardly posted on the MMC forums. I withdrew from DBF. I became very moody and irritable. And I felt horribly sick the whole time.

This past week it all came to a head. My insomnia came back full force. I left work early on Monday to come home and rest. We've had company staying with us this week, friends from college, who don't know much about what's been going on with my health. DBF has been unusually stressed at work. I asked for accommodations at work when a better desk opened up on my team, and my boss gave the desk to someone else. I felt like no matter what I tried to do, nothing was helping me to get or even feel better. I did have an appointment with my new therapist on Wednesday, but having to go through my family history was painful and only made me feel worse. (Though, in the long run, talking about some past issues will undoubtedly help me.)

Once I got the results from the holter on Thursday, I gave my headache specialist a phone call yesterday to let him know everything turned out normal, and my irregular heartbeat had disappeared. The tremors seem to be a holdover from the Lyrica and come on when I've overexerted myself. He returned my call yesterday but I missed it; fortunately he was on-call this weekend and called me first thing this morning.

What a difference a 20-minute phone call can make!

A big part of my Anxiety was my contradictory feelings that one, I am not ready to try any new preventive medications because of my awful side effects with them; but two, I couldn't face sitting around and doing nothing. So therefore (I thought) I had to try a new preventive. Faulty logic, I know. Medication isn't the only treatment available for Migraine Disease.

When I called my doctor on Friday and spoke with his NP, I told her that I'm not ready to try the propranolol he prescribed for me, and wanted to talk about alternatives. When Dr E called me this morning, we went over the symptoms I had been having - irregular heartbeat and tremors - and he saw from my call in yesterday that they've cleared up. Well, the heartbeat has. I told him the tremors only seem to come on at night after I've overexerted myself.

I explained to him my reluctance to try any new preventive meds, because of all of the awful side effects I've been having. He seemed to understand that and we discussed it for a bit. He also asked about my stress at work (somewhat stressful but I don't take it home with me) and my general emotional state (not so good). He asked straight out about any Anxiety/Depression issues, both of which have been worsening as my Migraines continue. I was relieved he brought it up without making my Migraines/CDH into an emotional problem. He recognizes that they feed each other, a sort of chicken-and-egg problem.

I asked him about supplements as preventives (in particular, CoQ10) and any alternative treatments I could try (I've tried acupuncture and biofeedback/relaxation in the past). He's not convinced that any supplements will be enough for a complex chronic case like mine. He thinks I need the more aggressive meds, but recognizes that I then run into trouble because of my sensitivity to side effects. But he is willing to go that path if that's my preference.

He gave me the option of a referral to an internist in the area who also has a degree in herbology. He trusts her, and I like that she has a background in both eastern and western medicine and uses them together.

So, I have a few options. I can try the propranolol that he prescribed for me last month (very low dose). He's a bit hesitant about this because of the potential side effect of depression. He also suggested I try an SSRI (Celexa) at a low dose, instead of the propranolol, to help ease the Depression/Anxiety and hopefully work as a preventive as well. I have the option of taking a med holiday until I feel ready to try something new. I can also get the referral to the internist and try the supplementation route. If I decide to try acupuncture or biofeedback again, I'm sure he will help out with a referral for that as well.

What I'm going to do is sit on these options and think about them over the weekend. I feel much better after talking to him. He really seems to understand my reluctance about meds and didn't at all push any drugs on me. And I appreciate that he understands my need to think over all of these options before I decide what to do next.

I still have a long way to go treatment-wise. My Migraines are less severe with the Botox, but I still have Migraine/CDH pain constantly. I know it will take time to find a way to break the pain and get the frequency down. But I have confidence that Dr E can work with me to find a successful treatment regimen. When I got the call back from his NP telling me to see my PCP for the irregular heartbeat, I was worried I had been brushed off and he was giving up on me. I feel very relieved after my conversation with him this morning. It's obvious he genuinely wants to help me and is willing to work with a difficult case.

I hope to be posting more frequently again. Over the next few days I'll be catching up on everyone's posts. Hope all are AWAP!


Be well,
MJ

finally, a rescue (medication)

Since getting my first Botox injections two weeks ago, my pain levels overall have decreased, even though my ongoing migraine still hasn't quit. My base pain level is now a 2 out of 10, rather than 4. I still spike as high as an 8 weekly or so, but overall I'm feeling a bit better.

This weekend was not so great, between intense sunlight, gross smells from neighbors' apartments and a broken elevator, meaning 4 flights of stairs. Sunday afternoon, DBF and I went to run some errands and by the time I got home - climbing up all those stairs - my pain was at an 8 and holding steady. Ice packs weren't doing anything.

So I decided to try some Relpax, which was the third time I took it. Both times previously, it had made me more tingly on my left side and sort of woozy, but I was willing to try it again.

Once again, it made me tingly. Very tingly. And then part of my face went numb. *sigh*

So I called Dr E's office first thing on Monday morning to let him know I was having trouble. He called me back toward the end of the day, and after a 10-minute discussion, he called in scripts for Amerge - as a "gentler" triptan option if I'm not tingly - and Fioricet - as a rescue if I am tingly.

All I could think when I got off the phone was that finally I have a doctor willing to prescribe me a rescue medication. My last doctor's attitude was "pain pills don't work", end of story.

I tried the Fioricet last night, only a few hours after picking it up from the pharmacy. It brought my pain levels down pretty well, so I'm happy to add it to my arsenal. It's not likely something I can take at work, which still leaves me without something to take if I'm tingly and in pain and at work. I haven't tried the Amerge yet.

I'll be calling my doctor again next Monday, to give him an update on the Botox progress. I should be able to let him know how both the new meds work out for me, too. I'm happy to finally be making some progress; I just wish it didn't take so darned long.

*sigh*

I have much more to say, but it will have to wait for another evening. So, for now, check out June's Pain Blog Carnival.


Be well,
MJ

out with the Topamax, in with the botulism

Just a quick post tonight before I retire for the evening.

I saw Dr E on Monday for my first Botox treatment. Much to my surprise, my new insurance company approved my doctor's request for Botox on the first try, no appeals necessary. My last insurance company denied the Botox, which turned out to be a blessing in disguise since it helped me to realize my last doctor was a turkey, so I fired her.

The procedure itself really was not as bad as I thought it would be. I brought DBF with me for moral support. After talking to me a bit about Botox, Dr E gave me about 12 injections, in my forehead, brow, back of head, neck and shoulders. The injections burned, for sure, but the pain was nothing compared to the migraine I had while I was there.

He also gave me the go-ahead to discontinue the cursed Topamax. I felt it was only giving me side effects and no benefits, and he felt that since I was on such a low dose I could go ahead and stop it. So right now, the only preventives I'm taking are magnesium and vitamin B2 (riboflavin). Plus the Botox.

I should know in the next few days if it's going to work for me. The day after the procedure was wonderfully low-pain. Yesterday I overdid it and ended up with my pain at an 8 by the end of the day. Today is somewhere in between. I'm faithfully tracking everything in my migraine diary and trying to be patient.

Dr E wants me to call in in three weeks to let him know how I'm doing. By then we'll have a better idea of my frequency and severity, and can discuss a plan from there. I have a follow-up Botox appointment scheduled in three months, but he plans to do some phone consults with me before then, and have me come in sooner if I need to.

(Let me just say again, I am so happy I found this guy.)

So, I'm keeping my fingers firmly crossed that the Botox will help. I'm not expecting miracles, but I'm hoping it will reduce my pain enough to give other preventives a chance to start working. And maybe, just maybe, one day I'll be rid of this migraine.

Also, if you haven't seen it already, check out June's Migraine & Headache Blog Carnival, hosted by the Migraine Girl.

Be well,
MJ

grieving my past life

I'm going to say it right now: I resent migraine disease, and everything it has taken away from my life.

I graduated college two years ago, a carefree, optimistic, idealistic young woman, about to embark on a promising career in architecture. The economy at that time was much better than it is now, and the job market for new intern architects was excellent. I had my pick of where to work, so I chose a firm whose mission and vision seemed to echo my own goals. I packed up and moved clear across the country, taking a chance on a new life. What better time to do it?

My first neuro, who saw me all through college while I was on Topamax the first time, suggested I try titrating off to "see how I would do". The tapering schedule he gave me meant that I was finished with the Topa before I even got to the West Coast. Fitting, I thought. A new life, no longer a slave to the little Topa pill I hated so.

An immature view, I realize now. Now I know the necessity of good preventive medication. When I was in college, I knew nothing about chronic daily headache or about migraine disease. I just knew that my head hurt all the time, and taking 50 mg of Topa every day meant my head only bothered me about twice a semester, but it also meant I couldn't consume alcohol with the same carefree attitude of my friends.

But what I realize now, what I have realized over and over again in the two years since I came off the Topa, is that that stupid pill that I hated so much is what allowed me to finish college on time, with an honors diploma and double-minor. It gave me a life I wouldn't have had otherwise. There's no guarantee, of course, that staying on the Topa would have meant it would have kept working for me - and that's what I tell myself every day. Because now Topa doesn't do anything for me other than randomly give me new side effects and make me depressed if I take too much of it. I thought at one point that it may have been working, but I no longer have that delusion.

Within a month of titrating off the Topa, the ambiguous dizziness and nausea, that I now recognize as my primary symptoms of CDH, were back. I blamed this sickness on everything: homesickness, adjusting to my new life, allergies, an ongoing fight with my father. It took until December, six months later, to schedule an appointment with my PCP. She treated me for a sinus infection; those antibiotics did nothing, of course, to actually fix my head. By February 2007 I was referred to a neurologist.

Nine months I had already given to this disease, convincing myself it had to be something else. And during that time, I was trying to establish a new life for myself. The weak social ties I had started to forge over my first summer here had already fizzled out. I just didn't feel well enough to go out and drink on weekends. I didn't have enough energy to make plans with people, or join community groups. I did a brief stint, playing clarinet with a local university band, but after a year of that, I simply didn't have the energy anymore.

From February until now has been one preventive after another, in various combinations. Topamax, nortriptyline, cyproheptadine, verapamil, gabapentin, Topamax again. Meanwhile, my CDH and frequent migraines turned into weekly migraines, then daily migraines, and now an ongoing migraine since November that's only becoming harder and harder to treat.

It's not that I resent the time I've spent trying to treat my migraines. I understand the trial-and-error nature of migraine treatment. I resent everything I've had to give up.

I no longer can go shopping or run errands for the most part. Fluorescent lights are a huge trigger for me. Not only do they aggravate my migraine, but certain tints of fluorescents - the kind most retail stores use - trigger diarrhea within 15 minutes of going into a store. Not so conducive to shopping.

I no longer go to see movies in the movie theatre. Seeing movies, especially action movies, in the theatre is both one of my favorite pastimes and biggest triggers. Seeing Pirates 3 triggered one of the first acephalgic migraines that I identified as such.

I no longer drive, except on very rare occasions when I absolutely can't avoid it. I don't feel safe on the road, since I know my concentration is impacted from this ongoing migraine.

I no longer drink. Alcohol seems to be a stackable trigger. It interacts with almost every medication I take anyway.

I no longer eat gluten, dairy, caffeine, MSG, preservatives, artificial sweeteners, high fructose corn syrup, and have severely reduced my sugar and salt intake. MSG and artificial sweeteners are confirmed migraine triggers. The rest do bad things to my digestion so I've cut them out.

I hardly ever eat out, because of my strict diet and because I hardly ever feel up to it.

I no longer do my computer-based design work. Computer screens are a migraine trigger. Working in front of a computer at work is all I can tolerate most days.

I no longer use a desktop computer at home. This doesn't sound like it would be a big deal, but my desktop is much more suited to do most design work. Since I can't do it anyway, DBF and I decided to buy a new laptop for me to use in the living room.

I no longer go to the library. This one makes me very upset. But our gorgeous library has fluorescent lighting, so I can only stop by long enough to pick up books I have on hold. No more Saturday afternoons spent reading there.

I have almost no social life to speak of. Since my migraines have gotten progressively worse as I've tried to start a new life here, it's been hard to form new social ties. DBF and I are going to make more of an effort to have people over this summer, but we'll see if that actually pans out.

But most of all, I no longer just "do" things without considering their consequences. A coworker invites me out to lunch; is there something at the restaurant I can eat? What kind of lighting does the restaurant have? I have to buy a new pair of jeans; do I order them online and risk them not fitting or do I try to buy them in a store and risk fluorescent lighting? We're out of cat food; I have to ask DBF to go buy some - I can't drive to the store and I can't go in there once I've gotten there.

There is a lot about my life that is positive. DBF, for one. A girl could not ask for a more supportive boyfriend. Without him, there is no doubt I wouldn't have been able to make it this far. I would have already had to move back to the East Coast to ask my family for help.

My job, for another. It's been a huge struggle to keep a full-time schedule with my health in such bad shape, but my job has excellent health insurance and benefits, not to mention is a great way to start my career. My firm and my boss have been pretty understanding of my situation and have given me a lot of leeway.

And of course, there's my family. My mom and sister are both migraineurs, and while their migraines have never been as severe as mine, they understand my pain.

Last but not least is my doctor. Without a good doctor I surely would have lost hope by now. I've just started seeing him, but I feel more confident he can help me than the last doc I saw.

It is just so hard to nurture hope in the face of so much failure. Five preventives I've trialed; all have failed. While there are many more to try, it takes a lot of courage to keep trying. And while I've been trying, my migraines have only gotten worse.

And more and more, I find it hard to suppress the question in the back of my mind: what if this migraine never breaks? What if I am always stuck with this pain?

Today I don't have any answers, or any insight to wrap this post up with. So I'll leave you, instead, with a quote from a book I recently finished:

"What will you do, if it does not turn out how you expect?"
"I do not know. Nor shall I worry about it until it happens. I still have an action left to take; until I have exhausted it, I shall not despair." - Robin Hobb, Assassin's Quest

Be well,
MJ

the irony of National Headache Awareness Week

It's ironic that National Headache Awareness Week would be a bad head week for me, but so it goes. Had I been feeling better, I could have publicized it at the beginning of the week, and perhaps even watched the new NHF youtube channel videos.

Instead, I've spent the week absolutely miserable, with severe head pain and the whole list of my typical migraine symptoms: vertigo, nausea, stomach pain, diarrhea, phonophobia, photophobia, cutaneous allodynia, sensitivity to smell, depression, difficulty concentrating.

Part of the problem is that I finished a 10-day course of prednisone, which Dr E had prescribed for me in hopes of breaking my months-long migraine. I took a 5-day "burst" of the steroid, followed by a 5-day taper, and I had thought my body was dealing with the drug pretty well. I had some unpleasant side effects that were tolerable. But this week, after coming off of it, was terrible. I had horrid body aches and no energy, making me even more sympathetic to my fibro friends out there.

Oh yeah, and the prednisone didn't break my migraine. I did get five days of low pain, but as soon as I started tapering, my pain climbed right back to where it always is.

Add to that, I'm getting more side effects from the Topamax again, which I don't understand. I've been taking a 50 mg dose - a low dose, even for a migraineur - since March. Suddenly, I'm having stomach pains, worse nausea, tremors and dizziness again. And a new one: muscle spasms. My body is acting like I just started taking the Topa, even though I've been on it for several months now.

Luckily, I will be seeing Dr E on Monday. I'm scheduled for my first Botox treatment. I didn't get a phone call from his office today, so presumably my insurance has approved the treatment. (I will be calling first thing on Monday to double-check.) When I see him, I will let him know the trouble I've been having this week, and ask him about the reappearance of the Topa side effects.

So, in honor of NHAW, I've been more aware than ever of the impact migraine disease has on my life. All week I struggled to get through work, and couldn't in fact work a full 8-hour day any day this week. Today I called out; even though my head pain wasn't as bad as it had been earlier in the week, my stomach was in bad shape and I had severe menstrual cramps to boot. And I was just plain tired.

I plan to spend the weekend recuperating - just like I do every weekend. But after such a bad head week, it's even more important to refocus on my body's needs and take care of myself. Everything else will have to wait. Including those youtube videos.

Be well,
MJ

a thank you note to my new specialist

I went to see my new headache specialist about a week and a half ago, and the appointment went incredibly well. I posted about it on the MMC forums if you'd like to read the full story; I don't have the energy to recap it here again.

I was so impressed with the doctor and his staff that I wrote him a thank you card, which I will be dropping in the mail tomorrow. This is what I wrote to him:

Dear Dr Elliott,

On May 21, I came to your office for my first visit, in my ongoing search for treatment for my chronic migraines. You are the third doctor I've seen in the Seattle area since February 2007, but the first I have felt the need to thank.

From the first time I spoke on the phone with your office staff, I felt truly welcomed and respected as a patient and person. Everyone I have spoken to at Virginia Mason has been courteous, polite and caring - more so than I've seen anywhere else. At my appointment, your staff made me feel very comfortable in an otherwise anxiety-producing situation. And they smile!

You and I spent an hour discussing all of my history, symptoms and concerns during my appointment. You took the time to answer all of my questions and explain anything I didn't understand.

For the first time, I feel a renewed sense of hope that together, we can work to find an effective treatment regimen and I can live my life again.

So thank you for your thoughtfulness and compassion. It is all too rare to find a doctor willing to work with his patients as equal partners, and even rarer to find one with such an excellent staff.

While it still may take some time to find an effective treatment for my migraines, I now feel confident it is possible. Thank you for renewing my sense of hope, and please thank your staff for me as well.

Sincerely,
MJ

communication

I'm not one to normally post much migraine-related news, but I couldn't pass this one up.

Dr Alexander Mauskop over at Headache NewsBlog recently cited a study done by Dr Richard Lipton and his colleagues, showing that doctors often don't hear out their migraine patients. This may come as no surprise to many of us that there is this breakdown in communication between doctors and patients.

The problem seems to be (from my reading of his short blurb) that many doctors ask close-ended questions of the "yes or no" variety. More useful would be "open-ended" questions that would require a longer response from the patient, a chance to explain.

Unfortunately, the problem doesn't end there. The information the doctors did obtain from the patients was often incorrect, and tended to make the patient's disability to be less than it actually was. Meaning preventive medication was often not discussed or prescribed when it may have been appropriate.

So what is a migraine patient to do? Many of us know the frustration of having a doctor not listen to us. In fact, that is much of the reason I fired neuro #3.

First, I'll link you to a couple of great articles over at My Migraine Connection, courtesy of Teri Robert:

1. Migraineur's Guide to a Successful Doctor's Appointment
2. Coping With Busy Doctors
3. Is Your Doctor Right For You?

Next, I'll share a few techniques I've used, that I'm still in the process of developing. Many of these ideas are modified from suggestions I've gotten from my buddies over at the MMC forums, so I certainly can't take credit for their ideas. But I would like to share them with all of you in the interest of better health care for all of us.

What I bring with me to my appointment:

1. Bulleted list of my relevant health history, including approximate dates of diagnosis.
2. List of my typical migraine symptoms.
3. List of my migraine triggers: suspected, confirmed and stackable.
4. List of medications I've tried: including dates, dosage, results and side effects.
5. List of therapies I've tried: including dates and results.
6. List of lifestyle changes I've made: including dates and results.
7. List of all current medications and supplements I'm taking: both prescription and OTC, including dosages.
8. For my current preventives, a list of the side effects.
9. List of concerns and questions, typed, with space left between the questions so I can write my doctor's answers.
10. Headache diary. I keep a daily diary and summarize it onto a monthly sheet. I bring both to my appointment and give a copy of the monthly sheet to my doctor. On the summary sheet, I note days I had a migraine, when it started, migraine symptoms, pain and disability levels on a 0-10 scale, any change in medication, abortives I've taken and medication side effects. I also track my menstrual cycle on here, even though I don't seem to have menstrual migraines. I've developed some shorthand abbreviations for this information, so I note that on the bottom of each sheet.
    

I take two copies of all this paperwork with me to the appointment, one for myself and one for my doctor. I write my full name, birth date and the date updated on each page. Taking two copies of the question sheet is especially important; that way, I don't chicken out from asking any of my questions and the doctor can follow along with me. Then all of these pages get added to my medical record in the office, and I have a copy for my own records at home.

Another suggestion that's been made is to take a tape recorder and record the appointment. Inevitably, no matter how well-prepared you are or how well you listen and take notes, you're bound to miss something. By recording the appointment, you can go back later and listen through the appointment. I plan to try this at my appointment with my new specialist coming up soon.

Communication is a big challenge in any relationship. In a doctor-patient relationship, it is one of the biggest challenges and most important skills. Because our migraines can't really be "seen" or "measured" for the most part, it is up to us, the patients, to communicate as best as we can. Going into an appointment well-prepared is a great first step.

Obviously communication is a two-way street. Sometimes a patient just can't overcome a doctor's inability or unwillingness to listen, and that's when it is time to move on.

Do you have any other suggestions? Please comment - I would love to hear them and share them with the rest of the migraine community.

EDIT: Dr Lipton's original study can be found on PubMed. I haven't had a chance to take a look at it yet, but I'll post the links here for you folks. In Office Discussions of Migraine: Results from the American Migraine Communication Study. Thanks to Dr Mauskop for providing me with the link.

-MJ

photophobia and fluorescent lighting: a quest

Like many other migraineurs, I suffer from photophobia, a sensitivity to light. My photophobia is constant, and gets worse as my pain gets worse, but since I've been living with this particular migraine since November, the photophobia has been particularly stubborn as well.

Also like many other migraineurs, I cannot tolerate fluorescent lighting. Part of the issue is the color of the light itself: the fluorescents at my office are tinted a warmer yellow, which I can live with, as opposed to the horrendous (and cheaper) blue-white found in many stores. These fluorescents not only immediately worsen my migraine pain, dizziness and nausea, but also have an unpleasant tendency of sending me running to the nearest bathroom with soupey poopies within 15 minutes. If my office had this blue-white lighting, I would have had to leave my job already.

Unfortunately, the tint is not the entire story. The imperceptible flicker of fluorescents is enough to drive the sensitive migraine brain wacko. This makes it a particularly difficult problem to deal with. Many of us cope by wearing sunglasses, or tinted glasses, but this is not always a viable option for me since I work in a field where I regularly meet with clients and consultants, so wearing sunglasses to these meetings would not be appropriate. It also doesn't do anything for the flicker, really, just gives our eyes a break from the brightness of the lighting.

What is a migraineur to do?

Fortunately, the woman in charge of office services at my office is also a migraineur, so she was able to help me get the fixtures over my cube turned off. This makes it possible for me to get through a workday without being miserable. It does nothing, however, for the fluorescents in our conference rooms or in the rest of our office.

Some months ago, I came across mention of the use of Nike Maxsight tinted contact lenses as a way to ease light sensitivity in Dr Alexander Mauskop's Headache NewsBlog. This reference simmered in the back of my head for a while, and I have since come across other mentions of the use of contacts to address light sensitivity. The Migraine Girl asked in an entry about MigraLens and Irlen contacts specifically for combating fluorescent lighting sensitivity.

After much Googling, I finally scheduled an appointment with my ophthalmologist when I discovered that his office carries the Nike lenses. I'll also note here that Nike discontinued these lenses a few months ago, but I figured I could at least schedule the appointment and talk with the eye doc and see if he had any suggestions. Who knows, the Nike lenses could be my saviors, and I would just order them in bulk from an internet supplier.

I went in for my appointment two and a half weeks ago with my eye doc, and explained my problem. He thought for a few minutes, then came out with a surprising statement - he had a few ideas, and he wasn't sure what would work but he was willing to work with me until we found a reasonable solution. He specializes in contact lenses, so I felt somewhat confident in his statement. He had some trial Nike lenses at his other office that he would look through to see if he could find any for me, and he would also dig up some other trial tinted lenses - just regular cosmetic FreshLook lenses with a slight tint - for me to try.

By the end of that week, he had the Nike lenses ready for me. He scheduled a two-week follow-up appointment with me, to give me time to try out the lenses.

First reaction: they make me look like some sort of demonic beastie (migraine beastie, maybe?). The ones I tried are the grey-green tint, which actually wash my eyes out to black. A very strange effect, but one I would put up with if they solved the fluorescent lighting problem. I would even put up with the startled coworkers.

Unfortunately, I only made it a few days with the lenses. I discovered my brain started to freak out after wearing them for about six hours. The tinting in them was too strange a color for all-day wear. (Imagine the color of bug lights - that's what color these lenses made everything.) This tint was especially pronounced on cloudy days, and we have a lot of those here in the Pacific Northwest. I also had a run of several severe migraine days, which may or may not be related to the lenses. They did help out a lot with sunlight though, when worn under my regular sunglasses, so it wasn't a total loss.

I had my follow-up appointment with my eye doc today. He offered me another, much more expensive option, which is prosthetic lenses. With these custom lenses, he can control exactly how much light is allowed into my eye, and I will not see any sort of a tint. He took some measurements of my eyes for these lenses and told me my pupils seem to dilate more than they should (not surprising - they also dilate unevenly depending on the severity of my migraine).

I feel these are a better option for me than the Nike lenses, but custom = expensive. He's taking a look into pricing for me and his office will call before they order them. The price tag should come in somewhere under $1000 - I may be able to get some medical insurance coverage for this, but it's not likely. (My vision insurance is basically only enough to cover my annual exam.)

I will be seeing my new headache specialist in just under a month, and I plan to pick his brain about this, at least because I want to see if he'll write a letter of medical necessity. He may have some other ideas too, who knows. The nice thing about these lenses is that they will reduce the amount of light entering my eyes in the periphery, which I think may help quite a bit with the fluorescent lighting issue. It won't solve it - really, nothing short of avoidance or removal will - but it's something.

Before I make this much of an investment, I will be doing some thinking about this. A part of me had hoped that my migraines would resolve somewhat quickly so I wouldn't have to deal with the photophobia/fluorescent lighting issue. But that is not likely to happen, and I need to find some ways to make my life more livable in the meantime.

Crazy idea? Maybe. As a side note, more blog space will be devoted to the fluorescent lighting issue in the future, on the advocacy side of things. Stay tuned for updates.

terminology

The end of last year, when I was still seeing neurologist #2, I remember questioning the need for an accurate diagnosis. After all, chronic head pain is chronic head pain, and I need to find an effective preventive regimen regardless of what kind it is. It was about this time I began to wonder if I needed to consult with an actual headache specialist - someone who dedicated their practice to the study and treatment of headache and migraine - rather than just a neurologist. Since neuro #2 began to run out of ideas, I decided a fresh pair of eyes on my case wouldn't hurt, and I asked for a referral to a specialist, AKA neuro #3.

I was fortunate (I thought) to get in with neuro #3 in about two weeks. She was just coming back early from maternity leave since the other neurologist in her practice was leaving, and had not scheduled any patients yet, so I was at the top of the list. So I had virtually first pick of appointments and was able to schedule fairly quickly. The first appointment went well, and after looking at the list of five preventives I had trialed and failed, she wanted to try me on Botox, her main interest and area of research. If that didn't work out, we would retry me on Topamax, since I hadn't given it enough of a trial the year before.

After two months of waiting around, my insurance rejected the pre-authorization claim for Botox, labeling it "experimental". After a number of phone calls, she had finally agreed to write me a script for the Topamax, and once the insurance rejected the Botox I scheduled another appointment with her to discuss my options.

I had this appointment with her about a month ago. I went in well-prepared with a list of questions, and brought DBF with me in case he had any questions. For some reason, this appointment didn't seem to go as well as the first. Neuro #3 went over all my questions with me, but was completely unwilling to even discuss the possibility of rescue meds - saying simply that "they don't work" - and didn't want to discuss any treatment options for my daily migraine pain. When I asked her the difference between chronic daily headache and transformed migraine, she said they were different terms for the same diagnosis, and implied that my ongoing migraine is simply a headache - an implication I did not pick up on right away.

After the appointment, I had a weird sense of hopelessness I couldn't immediately pin down. The following week, my daily pain spiked again, so I decided to call in to try for an IV treatment, which neuro #3 had reluctantly offered to me as an option when I questioned her about it, with the caveat that it wouldn't do much for my "regular daily pain". It took me five days to get in for this treatment because of her irregular schedule: she typically only works three days a week. This scheduling mess, coupled with the feeling I couldn't shake that she had given up on me when the Botox was denied, finally pushed me to fire her. (My mom later pointed out to me that since I couldn't do the Botox, my doc had demoted me to her B-list of patients.)

Fast-forward to this past weekend, with all these strange symptoms I've been having. I called into the nurse's line early Monday morning to leave a message about the new symptoms that cropped up over the weekend. I got a call back - which I missed, of course, so the nurse left a message - saying that they would pass the message along to my doc on Tuesday when she was back in the office.

Tuesday (yesterday) afternoon, I finally got another call back - which I missed again, because they only ever call when I'm in a meeting at work - with a message from a different nurse. Neuro #3 said the symptoms were probably not from the latest IV treatment, and "may be" related to the "headache". If I still had some concerns, I could schedule an appointment with her nurse practitioner, and here is her phone number. Click.

Are you kidding me??

This short message confirms my instincts in firing this doctor's sorry butt were correct. She will not even call this migraine a migraine, only a headache. But now it makes more sense why she was so unwilling to offer any treatment for it, since she thinks it is only a headache, not worthy of any treatment.

So, it's on to neuro #4. I have an appointment scheduled with him on May 21, four weeks from today. I am much more encouraged by his office than by that of neuro #3. His staff is much more polite and helpful. I received my new patient information packet in the mail within a few days of my appointment being scheduled - rather than the day before my appointment - and the forms are much more detailed, including a depression screening form. I'm just very glad I didn't wait to move on to a new doctor and went with my instincts about neuro #3.

Now, I just need to get through the next few weeks.

betrayed by my own head

A few months ago, I read a book by Michael Stein, MD, called The Lonely Patient: How We Experience Illness. While much of this book is framed in the author's experience with terminal illness (not his own, but that in his family), he does speak to chronic pain throughout. He divides the book into four parts, corresponding to the four reactions he sees to chronic illness: betrayal, terror, loss and loneliness. Betrayal is certainly one of the emotional reactions I seem to revisit frequently on my journey toward acceptance of this disease.

This weekend - Saturday night, especially - was another visit of betrayal.

Over the past two years, my chronic daily headache has gradually become daily migraines, and now a continual migraine since about the end of November. On one hand, this has taken away the unexpected and often frustrating aspect of episodic migraine, which is you just never know when it might strike. I always know when it will strike, which is always. I wake up with the pain, I eat, breathe, work, think, walk, do and sleep with the pain. It's there, a constant resident in my brain, whether I like it or not. I'm doing what I can to dislodge it, but in the meantime, I'm stuck.

My brain decided to play a new trick on me Saturday night.

DBF and I were curled up on the couch after dinner, watching tv, when I had this weird wave of dizziness pass over me, followed by pins and needles all over and a sort of hot flash. Then the tingling settled in on just the left side of my body (arm and leg). After a few minutes, when it didn't pass, I started to get rather scared. Something isn't right, my instincts are telling me.

You see, a migraine that lasts longer than 72 hours, without at least a 4-hour break in pain while awake is status migrainous, considered a medical emergency because it puts the migraineur at increased risk of migrainous stroke. Having had this particular migraine since last November, I pay extra attention to new symptoms. And like any educated migraineur, I know the symptoms of a stroke.

So, I told DBF what was going on, that I was scared. We decided to call 911. He told the dispatcher what was going on, described my symptoms and told them how long my migraine had been going on. The paramedics got here relatively quickly - though it seemed like an eternity, of course - and checked my vitals while they asked me some questions about my symptoms. They left the decision up to me whether they would bring me into the hospital or not, but they saw nothing life-threatening that concerned them. They did remind me that they are only firemen, of course, not doctors. I decided not to go with them.

I did call the doctor on-call at my fired specialist's office to see if he thought I should seek emergency attention. He spoke with me for probably ten minutes, asked some questions about my symptoms, about my IV treatment on Friday, including which drugs they had given me, when, and if I had had them before; as well as if I had had these symptoms before. He also checked to see if I had had an MRI before (I had one a month ago that came back normal). He believes these new symptoms to be another manifestation of this ongoing migraine and described it as "complicated migraine", which is a descriptive term (not a standard diagnosis). He did not see any need for me to seek immediate care, but did encourage me to call my doctor today.

As unpredictable as this illness often is, we still expect it to follow a certain pattern. My pain is usually here, I usually have these symptoms, I usually get a migraine after encountering these triggers. Whenever our disease breaks the pattern, it's frightening for one thing, but we are also left with a sense of betrayal. Migraine beast, it's hard enough to cope with you on a normal day, but why do you have to change your pattern?

The tingling has not gone away since Saturday night, but I also have not developed any new symptoms. The doc on call told me some specific things to watch for that would indicate a need for immediate medical attention. I called into the nurse's line this morning and left a message about these new symptoms; I got a call back asking for some more information, and letting me know the message would be passed along to my (fired) specialist tomorrow since she was already gone for the day. (Another sign that I know I made the right choice in firing this doctor - unfortunately she's all I've got until May 21 when I see the new guy.)

The good news is, I know I can rely on DBF in case of emergency. He took me seriously and didn't question the need to call 911. He kept me calm while we were waiting for the medics and when it was all said and done, gave me a big hug when I started to cry. And cheered me up by making me laugh. Because this whole thing freaked me out.

So, a reminder to all of you fellow migraineurs out there: if any new, unexpected or worrisome symptoms crop up - even if they are just new symptoms - please check with your doctor at the very least. When we are dealing with brain issues, it is much better to just have things checked out.

-MJ

well, hello

I thought it was time I joined the blogging world, so hello, blogging world!

A brief introduction. I'm a 24-year-old chronic migraine sufferer. I've had migraines as far back as I can remember, but I wasn't diagnosed until I was 20. Before that, I thought I what I had were "sinus headaches", but I was mistaken.

I'm going through a particularly bad migraine cycle right now, which has been going on almost two years. Since last November, I've had constant pain 24/7, despite the effort of several doctors whom I've either fired or who have referred me elsewhere. I will be seeing a new headache specialist (neurologist #4) next month.

I do my best to cope with the constant pain, and would be lost without my DBF and fuzzy Madcat. I would be hopeless without the wonderful support and information on the MyMigraineConnection forums.

A brief explanation about migraine. Migraine is a genetic neurological disease, and is not just a headache. About 36 million Americans suffer from migraine, more than those who suffer from asthma, diabetes and coronary heart disease combined. Yet migraine remains underdiagnosed and undertreated. I'm fortunate that I have a diagnosis and some form of treatment, even though the treatment hasn't put so much as a dent in the pain.

Welcome again to my fledgling blog. Glad to have you here!

-MJ