Musings of a Marfan Mom

An ER Headache

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This is a post that is not a particularly cheery one, so be forewarned. Part of the purpose of this blog is to document the ins and outs of Marfan, and I feel that needs complete honesty.

I’ve spent the better part of 2 of the past 4 days in the Emergency Room. Saturday morning I woke with a migraine that turned into the worst headache of my entire life. Concerned it might be a brain bleed (even the illogical becomes logical with Marfan), Mark and I dropped Menininho off with friends and headed to the ER. Several hours later we learned I’d had my first cluster headache.

The good news? According to Wikipedia, cluster headaches “may be the most severe pain known to medical science.” That means I was TOTALLY justified when I called Mom on the way to the hospital and said something to the effect of “Mommy, I’m probably dying so I just wanted to tell you I love you and Mark’s taking me to the hospital.” The bad news? They’re kinda chronic. And when I called my Marfan cardiologist, he told me I was his first Marfan patient to have them (and he has hundreds of Marfan patients). Cluster headaches aren’t directly related to Marfan, but they’re related to migraines, which people with Marfan tend to get at a higher rate than the general population.

So, knowing that I’d be going to get more cluster headaches over the next few weeks, I was anxious to get ahold of some medication. My cardiologist approved a particular drug for me that we’ll call Q. My general practitioner (GP) called in the prescription for me last night, just in time for me to get the beginnings of another cluster headache. The medication worked like a dream, except for one thing. After about a half hour, my neck began to tighten. I got dizzy and couldn’t hold my head up. I was terrified.

Mark called the hospital and, to make a long story short, it turns out I was never supposed to be taking the medication! However, neither my doctor nor the nursing staff had bothered to make me aware of the late-in-the-day change of plans.

After a fitful night of sleep, I called my doctor’s office and complained. Because the pain woke me up 2 hours early, I had PLENTY of time to summon all my righteous anger and figure out exactly what I was going to say. There was a lot of blame shifting, but I feel like the issue was resolved as well as it’s going to be. I asked when I could expect my neck to start feeling better, and the nurse said she’d call me back.

When she did, she told me I needed to go to the ER right away because my GP was concerned I was having a vertebral artery dissection, which Q has occasionally caused in patients with Marfan. A dissection is a tearing of the artery and in Marfan it’s very rare to get dissections outside of the aorta, the main artery running from the heart. Any of my Marfan readers know what kinds of thoughts run through your mind when your doctor says “dissection.” They’re life threatening. There is a moment of panic (“Is this the Big One?”) and then you go into the Zone and get done what needs to be done.

“Mark!” I called from the bedroom. “Doc thinks one of the arteries in my neck dissected. Time to head to the ER. Call a sitter while I get dressed.” And looking back, we were efficient. In a matter of minutes we’d found a sitter for the baby, gotten all of us dressed, emailed my cardiologist to let him know what was going on, packed Menininho’s diaper bag, and rushed out the door.

Despite the nurse’s assurances that I would get in for a CT quickly, I found the ER to be mostly a waiting game. It took almost an hour for a doctor to see me (who told us he didn’t think I was having a dissection), and then another hour for him to page my cardiologist. It was decided I probably wouldn’t need a CT because I wasn’t actually having symptoms of an arterial dissection. My GP was totally wrong. But, it took another 3 hours of waiting and not being allowed to eat (“just in case”) before I was sent home. And of course my cardiologist came down and advised me that if I’d just called him directly in the first place, I could have bypassed the entire ER “experience.” (Which, by the way, included a neighbor with a gunshot-wound-infected-leg and a hypothermic drunk who was prone to shouting.)

My neck still hurts.

So, I don’t write this as a woe-is-me post. Please don’t take it that way. Most of the time I view Marfan as a blessing. If I had the opportunity for God or a magician or whoever to take it away and make me totally healthy, I’d turn them down. I am happy with the person that Marfan has made me and I am grateful for the opportunities that I’ve had working with this foundation. But Marfan IS a chronic, life threatening illness and some days really do SUCK. And I think it’s important to acknowledge both the good and the bad, and then try to turn the bad into a learning opportunity.

So, to my “Marfriends” and myself:
1) Have a better emergency plan than I did (or just use the NMF’s, which is useful even to those without Marfan).
2) When possible, consider bypassing the other doctors and go straight to your cardiologist whenever there is ANY remotely cardiac issue.

And to anyone who actually read this post to the end, go buy yourself some chocolate; you deserve it!!!

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17 Comments

  1. Off to the chocolate store … :-)

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  2. Hi Maya,
    I’m so sorry you had to go through so much. What a horrible mistake to make! I am glad that you didn’t have a dissection anywhere. I have Marfan and an aortic dissection and just hearing someone say the word “dissect” in a different context (I dissected a frog in Biology class) gives me chest pains. I hope your neck feels better soon and that you are given the right medication for your headaches.
    I definitely agree that having Marfan can be a blessing, but it can definitely suck sometimes, especially when having to go to the ER.

    Jen

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  3. Whew, Maya!!! Just had a Hershey kiss.

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  4. Woo hoo! I get chocolate. :)

    You are right… sometimes the lot we are dealt just sucks. But, like you said, it makes us who we are and we just need to wait out the sucky parts and let the good parts come.

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  5. Thanks again Maya! I am sorry that you had to go through so much but it sounds like you certainly learned from it, I know I did (I have a tendency to call the family doc when I know it is easy to get in touch with the cardiologist). Also I now understand why Lee doesnt want to let go of his diagnosis, it has been a huge part of who he is for the past 14 yrs – how do you just say “thats not me” after so long? It would be almost like dismissing himself.
    Hugs

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  6. So sorry for your pain. I always thought you were the well prepared one. You always have the right answers for Kari.

    She is doing better on her heart med and has gained 3 lbs. wow… Plus pt is helping rebuild her strength.

    Thank you for all you have done for her and me. From letting her know there were others like her, to conference, to sending us to ER in Aug. and just being an awesome person and friend.

    We love you. Hope your headaches are few and very far apart. Merry Christmas. Michelle from TN

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  7. Hi Maya
    I too get these awful headaches in clusters but haven’t any marfan specialists here so am putting up with them even though they leave me imobilised. Tend to come on in the evening. But you were right to go get checked. You never know with marfans but you do get sick of repeating yourself when in ER what marfans is and how it has effected you. It makes you feel like a hypercondriac……but being a dissection survivor myself you can never be too careful and if cardiac related speaking straight to your cardiologist is a good idea and bypasses all the middlemen and having to do an awful lot of explaining. I hope they headaches don’t come too often for you.
    Sue

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  8. oh my lordy, I read part of that cluster headaches article and I am SO SORRY. I’ve had some zingers in my day, but I don’t think they quite reached that level.
    I’m going to eat a double chocolate chip cookie now…

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  9. Hey Maya, so glad you’re okay after that mix-up. I get migraines quite often so i know hw bad cluster headaches can be, just hang in there.

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  10. Migraines and clusters are rampant in my family. I’m sorry you had to go through this. Your attitude is awesome!!

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  11. What a scary experience! I think it’s great that you”re using your blog to educate and inspire others. What an inspiration! I truly hope the cluster headaches settle down and that the new medication will help. Now let’s go get some chocolate!

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  12. Hi! I am a new reader to your blog. I heard about it through another marfan mom on facebook. My husband and 1 year old son, Sam, both have Marfan. I just wanted to tell you that we have had the same experience with the ER and the fear and the waiting and so on. Although it is not a “happy” post I am truly grateful to you for writing it. Sometimes I feel so alone when it comes to the fear about Marfan. It is nice to hear someone write about their experiences.
    We also feel blessed for Marfan even though it really can be scary. My husband and my son wouldn’t be who they are without it. So anyway I just wanted to tell you thank you for this blog. It makes me feel so reassured to hear someone else’s experiences.

    Rachel (rachelspeese@hotmail.com)

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  13. WOW! I’m sure you handled it all pretty well. I can’t believe the staff would do that and not tell you something that could potentially life threatening. You’re a trooper and I admire you greatly. I hope you got the right meds now.

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  14. Hi Maya,

    Hi, I’m stopping by from SITS! I just wanted to share a bit of comment l♥ve. I’m really glad I found your blog. I am living with Dysautonomia, which I believe some people with Marfans have also. Is that correct? Anyway, I can SO feel your pain when it comes to going to the ER and waiting forever, dealing with medication mix-ups and all the other hassles that come with having a life-altering, chronic illness. I’m SO sorry you are now also dealing with cluster headaches on top of it all. I know those are horrendous. However, please know there are lots of people out here who care. :0)

    I am going to read more of your blog when I get a chance and I will keep you in my prayers. I hope you will visit me sometime soon, too.

    Have a wonderful day!

    Teresa <

    http://toomanyheartbeats.blogspot.com

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  15. Dear Maya,

    I did this all backwards – I had chocolate birthday cake for breakfast before I saw your blog, so I HAD to read it to the end! In the few short weeks I have been following your blog and we have been corrresponding, I have grown to admire your compassion and advice for others; now I have come to admire your strength and courage. Thank you for sharing your story with us! I know that Precy and I will learn from your experience, and, from the comments, a lot of others will also. God Bless you and your family! Joe Smart

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  16. Hi! I saw your fb status and had to look. OW!! I’m so sorry for your ordeal-and what may come?! It sounds painful. I’m glad you were able to get it all together so nice and quickly. I’ll be checking back sooner than later. 😉

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  17. *munching on my chocolate* I dunno how do kept your patience. Im so not a fan of doctors and hospitals so I’m always hostile when I go. Having to keep going takes alot of strength.

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