Wednesday, March 03, 2010

Insane in the Membrane

So we've been having a bit of a rough patch over here. I had what appears to be three migraines in two weeks. Each one waking me from sleep at 3 AM and torturing me for the entire day. I had no aura or advanced notice that it was a migraine...only the left side of neck felt odd and swallowing felt difficult. I just assumed I was getting some sort of virus, but woke up instead feeling like my head and neck were being bludgeoned. The first one landed me willingly in the ER where the CT scan was thankfully normal, and meds were administered. They medicated me, then sent me home with an Rx for Compazine, if needed. I spent the entire next day on the sofa feeling like I had been hit by a truck.

The second migraine was like the aftershock and that arrived two days later. This time I made an appointment with a neurologist. He asked a lot of question and did some poking. To his surprise I could not feel the pin he was jabbing me with above my left knee. I explained that the numbness in that leg arrived after my unplanned c-section and 2 subsequent blood patches due to a loss of CSF from the epidural for C-Section. Even so, he ordered an MRI of the brain. It too, is thankfully normal. There were two small patchy areas noted. One, he explained, is typically seen in people who have suffered severe migraines. The other, is kind of like scarring, and likely the result of the migraine. Migraines are not headaches...migraines are so extreme that they cause damage. He prescribed Ultracet for pain, Skelaxin for the spasms in my neck.

When I got my energy back a few days later, I tried to get our neglected nest back in order... I cleaned the house, did the laundry etc. Then exactly two weeks later I got a third migraine. I told Satch he could watch tv, then phoned the Great Robinsky to come home, then took half the dose of Ultracet as I was afraid to be loopy when I was home alone with Satch. Robert called the neurologist and said that the doctor suggested I take Skelaxin, Ultracet and Compazine. I protested that it seemed like it was too much medicine to take all at once, but I did what was recommended. I just don't understand how meds are dosed the same for adults. Though I am 46 years old, my body is the size and weight of some 12 year old boys. Would you give a 12 year old and adult dose?

Some time after, I began feeling a very strong vibration in my toes and traveling up my body. It literally felt like someone was holding a buzzer to my body...and the next thing I knew my feet and hands twisted up in spasm and I couldn't turn my head. Robert offered to take me to the hospital, but I couldn't move. I suggested he call 911.

I don't know how many people were standing around my bed because I could hardly see. My left eye didn't seem to be working right and I couldn't move or turn my head to get a look. One of the medics asked, "are you having anxiety" and I said, "I wasn't before, but I'm scared right now". There were lots of hands and voices and I was hoisted downstairs like Shamu and placed on a stretcher where I proceeded to toss my cookies. Then I was in the back of an ambulance with oxygen and an IV. I think he said he was giving me Zofran for the nausea. I barely remember the ride to the hospital. I only have snippets of scenes in my head, but not a complete memory.

I was wheeled into the ER, and remember lots of questions from many faces, one of which was a very hostile nurse. I'll never forget her and how nasty she was. I actually remember saying to her, "Trust me, I don't want to be here any more than you want me here". Questions, lots of them, followed my snippy interjections by the hostile nurse, "ONE WORD ANSWER YES OR NO".
Then I heard the doctor say to Robert, "I can tell you EXACTLY what happened to her... after she took the Compazine... Dystonic...Dystonic... I heard this word over and over. Then the hostile nurse came to inject meds into my IV and I asked for the name of the mediation. She wouldn't tell me. She just kept saying, "it's an antidote that will stop the reaction you are having to all the meds". Then she came to inject another med and I asked again. She wouldn't answer. I said, "I need to know because I don't want narcotics...I want to know that you are not giving me a narcotic because I don't want to be spaced out". She said, "I don't think you could be anymore spaced out than you are right now". (Oh, she was so lovely) Robert chimed in and said, "My wife requests the name of the medication", and then the hostile nurse turned and said, "It's Methocarbamol, do you even know what that is?" Robert said, "Yes, actually I do...I practice judiciary law and read medical charts all day". Then sometime after that, she picked up Satch very abruptly and said curtly, "LOOK AT ME". He turned his whole body away from her. He did not want her to touch him (partly because of his tactile defensiveness and partly because of bad vibe). I tried to say something, but I was so out of it. I was hoping Robert would stop her, but I think all three of us were stunned into speechlessness as her actions were so inappropriate, aggressive and utterly shocking.

*Note to self, remind Satch that he can say no to anyone that he doesn't want touching him and we will insure that his boundaries are respected.

Shortly after the meds took affect, I had some relief but was completely out of it. I don't remember the ride home, but I do remember getting out of our car and barfing in our parking lot before finishing the walk to the house. I remember I had no shoes on because sidewalk was darn cold. I remember only snippets.

I had a follow up appt with my neurologist yesterday about the dystonic reaction that landed me in the ER. It turned out that he did not instruct Robert to give me Compazine because it was prescribed by the ER not him. Robert made a mistake. The neurologist told Robert to give me Skelaxin and Ultracet. I nearly broke down and cried, but kept it together because Satch was sitting beside me. I told my neurologist that feel exhausted and that my left arm, neck and back are extremely sore. He said that I should rest and that I may feel this way for up to a week after one migraine. I've had 3 in two weeks and I can tell you I feel pretty terrible....I'm exhausted, queasy and the left side of my body aches so badly that it's actually hard to keep my left arm up to type this.

I need to find out more about my headaches and how to stop them. The pain defies description. I had migraines as a child, but never had them as an adult. As an adult, I only had headaches and they would go away quickly after taking a Motrin. The migraines are quite different...they come out of nowhere and are intense and debilitating. I can't stand up. The left side of my body becomes weak with sort of a numb/tingly/achy sensation. It is horrific. I need to find the right treatment because I need to be functional for Satch, not doped up. I also need to find a babysitter who is loving, fun and trustworthy and would be willing to step in and watch Satch if I have another migraine.

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posted by Wendy at 5:38 AM

16 Comments:

Blogger Barbara Sandifer said...

Oh my - don't even know where to start with this e-mail!!! So very sorry to read about your ordeal! First I love love your website! Next, here is some info about migraines!! go to www.gottaheadache.com Went to Carol Foster for two years and truly found relief! Also I go to the Diamond Headache Clinic in Chicago and see Dr. Merle Diamond - she is WONDERFUL! Have surfered with migraines for over 20 years and I know you feel like you are going to die! Please please report the nurse - not just for what you went through but for those that follow after you and for your precious son! I would love to talk with you more. Will be praying for you and will look for more posts. You need to see a migraine specialist! Barbara

9:16 AM  
Blogger Wendy said...

Thanks, Barbara. I would love to talk with you also. Feel free to email me (wendyatwendycookdotcom) I will check out the link pronto.
Much love,
Wendy

10:10 AM  
Blogger Veronica TM said...

so sorry to hear this, wendy! the whole thing seems so unfair! i've had migraines for the last year, not as debilitating as yours, but still very painful and i cannot even imagine all that you've suffered.
that nurse made things even worse. i can't understand the attitude and that she gets away with it.
i am sending you a big, big hug. even though we never 'met', i really would like to be there to help you with anything you need, and fiona and satch would play together.
feel better soon, w!!

11:43 AM  
Blogger twolittlemagpies said...

Hi,

I feel your pain. I have had horrible migraines for 20 years. The only thing that I have found for myself that gives me relief in order to take care of my kids is a medication called "Imitrex". I too do not take medications lightly, but I need to be able to function. If I take one, lie down for 1/2 hour, most times I'm good to go, otherwise they can go on for 10 or more hours. I also recommend yoga and pilates. I find that some of those exercises can give me relief. Good thoughts that you find something that works for you.

1:42 PM  
Anonymous Anonymous said...

Yikes!! I am so sorry!! Hope you find a solution soon. Thinking of you.....Angela

3:13 PM  
Blogger happymom said...

Wow - what a bummer. I am amazed that you can suffer migraines, and still find the energy for Most Alive Mondays and crystals, and chocolate strawberries. You are an amazing person.

5:57 PM  
Blogger Wendy said...

Gee thanks, happymom. My migraines last approx 10 hours or so. The next day or two I feel pretty much like crap, but I can't exactly flop because I have a 4 1/2 year old son who wants to so stuff. Thankfully, crystals don't require any energy on my part, short of boiling some sugar syrup and pouring it into a jar. I can't take credit for evaporation. With regard to the chocolate covered strawberriesm, it seemed like a simple request and a moment of quiet, no? Melt some chocolate in the microwave, let cool and enjoy the hush while the wee boy is dipping berries.

The category "Most Alive Monday" serves as a reminder for me to notice the lovely in the ordinary and I try to do that weekly. I can cue them up to post with very little effort.

I hope that dispels any myths on how amazing I am.

Indeed, the 3 migraines I've had are a bummer, in fact, they down right sucked. But what sucked even more than the pain was not being able to enjoy my son.

6:35 PM  
Blogger Elise said...

Oh Wendy, I don't even know where to start. The first thing that comes to mind is that I am so sorry you have had to endure ALL of this.

How horrible to encounter that bitter nurse - why would you go into nursing if you don't have a compassionate bone in your body?

I wish I had some information that I could pass onto you about relieving your migraines.

You will be in my prayers and I hope you are able to talk to some health professionals that have the knowledge and wisdom to alleviate these recurring migraines.

Thinking of you and praying for you.

9:35 PM  
Anonymous Stacy (Mama-Om) said...

{{{hugs}}}

Wendy, what a huge challenge to come out of nowhere for you all. I am wishing you goodness, magic, and much support on your journey.

Warmly,
Stacy

11:31 PM  
Blogger Cheryn said...

It's no myth that you're an amazing mama- just the fact alone that the pain of disconnection is worse than the pain of the migraine...that is for sure an amazing mama, then to add in the activity treats, even simple as you may describe them.... :)

I love how despite the intensity of the story, it is titled with a humorous twist- insane in the membrane.

Wishing you calmness, clarity, wellness, and continued togetherness.

I had bought this supplement for my husband, although I can't report any result as he never took it (Grrrrr....not only health-wise, but it cost 30 bucks!) . Maybe worth looking into-
http://www.migrelief.com/prodinfo.htm

3:35 AM  
Anonymous Erin said...

I suffer from migraines as well. I got to age 33 without one migraine and now I get 2 a month like clockwork. I am told they are hormonal which I believe because my migraines went into overdrive when I was pregnant then went back to the 2 a month after I delivered. I had over 55 when pregnant.

Without getting too personal, Im told they can also start if you are pre-menopausal. Maybe yours are hormonal, as well? (My cat scan and MRI were normal, as well.)

My only saving grace is that I get an aura beforehand and can take my medication before it hits. The sooner I take the medication, the less pain there is.

Unfortunately there aren't many options as far as pain medication. Either you take something every day as a preventative or you can take something when they hit. (If you take a preventative, which I tried, be careful. They affect your blood pressure and since mine is naturally low, I got lots of dizzy spells.)

Ask your doctor about a drug called Fioricet. Thats what I take and even took it while pregnant. And Im told that narcotic pain relievers can cause rebound headaches if used too often. Fioricet is not a narcotic and does not make me loopy.

You can email me at ealmaleh@gmail.com if you wanna ask me about anything. Sorry for writing a book but I know the pain you are going through and it is awful. good luck!

Erin

3:21 PM  
Anonymous vickie said...

oh Wendy!!! i'm so sorry to hear what you've been going through. how horrible to be so debilitated and in pain and then for it to be made worse by this horrific nurse. and picking up your son...oh lord. she is lucky you were not able to intercede on his behalf.

i so pray that you'll be able to find someone realiable and trustworthy adn loving to help you with Satch and that you find an answer to these horrible migraines.

best

vickie

5:39 PM  
Anonymous allison said...

oh my! you've had a lot on your plate lately. big hugs to you friend and wishes for easier days just around the corner.

3:41 PM  
Anonymous paula said...

Wendy,
I sympathize with your ordeal. Though I have not had to deal with going to the hospital because of a migraine, I have had them since I was in college. I'm now going on 34and I still have them. I get them to the point of nausea (my sister has them too and can't even get out of bed). Unfortunatley, like you, I also have children (a 7yo boy and 1 yo girl) who depend on me so I have to bite the bullet until my DH comes home and takes over. I was told that it was due to stress from one doctor and another told me it might be the caffeine in my tea/coffee and chocolate (though apparently meds to help it have caffeine?) I switched to decaf and slowed down the chocolate consumption and it did seem to work. I just had one the other day and I couldn't move. Any slight movement, noise, light felt like someone was gouging my eye out and hitting the back of my head with a hammer. Unfortunaley I don't go the meds route right away b/c scared of them really but, I do try excedrin for migraine. My sister takes it so I finally gave in and have used it and they work. I used to get migraines almost every other day when I had a stressful commute from 2 jobs (before my son was born) but the week after I resigned from them, they stopped. I only get them once a month though now...Thank goodness. Anywho, sorry about your ordeal maybe the excedrin might work? Don't know, but feel better.
PS... I would report the nurse...horrible bed side manner to say the least...

3:42 AM  
Blogger Jessica Monte said...

Wendy, I can't believe how the nurse treated you! I have had good and very bad experiences at that same hospital (I'm assuming you went very local). In the future, I t hink I will drive a few miles further for better care elsewhere.

In any case, I am praying for you. I hope you do find good care for Satch and that your migraines will subside. If you need me, I am here. Seriously.

6:50 AM  
Blogger denise said...

oh my, what a horrific journey. i get migraines too. luckily not as often as i used to get them, but i cannot handle sound, light, smells, speaking. intense pain. i hate taking meds, and can only imagine how horrible that was. argh! hopefully you reported the nasty nurse.

i am sure you have thought of this already, but in the past i have found relief from acupuncture & acupressure in combination with traditional docs.

hugs.

12:43 PM  

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