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lexapro for chronic headache now unbelievable pain

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Posted 10/16/2012 4:53 AM (GMT 0)
My 16 year old daughter has complained of a constant headache since the age of 5. CT MRI allergy testing all negative. Brief trials of elavil then paxil caused dizziness and anxiety so eventually she swore off medication altogether and has managed her pain very honorably, setting high goals academically and physically. Staying active and social was her coping mechanism.
about 2 months ago she began having pain in her legs. She also has bilateral pars defects at L5 as a result of stress fractures from competitive cheerleading. Pediatrician mentioned pain management referral but then sent her to pediatric neurologist instead as well as neurosurgury consult for her back and leg pain. We saw the neurologist first who focused on her headache. He started her on lexapro 10mg. He said just try to get through the first couple of weeks of side effects and it should help. Within the first week she had frequent teeth chattering and said she felt shaky and had trouble saying what she wanted to say. By the end of the second week she was having major anxiety and panic attacks as well as sweating, dizziness, diarrhea, weird sensations in her head...like a curtain being pulled down stopping her brain for a second, difficulty thinking, and still shaking.
She was missing school at this point and after 3 weeks we decided no more lexapro. The neurologist didn't have her wean...actually said it would be out of her system in 3 days. Its been 2 weeks since her last dose and she continued to have anxiety and tremors until a couple of days ago but now she has a migraine-like severe headache. She is hyper-sensitive to sound, light, and smells.
In the midst of this she had a steroid injection in her back. (It hasn't helped at all but it hasn't been 2 weeks yet) She had valium for that procedure
and has taken a total of 7 mg klonopin when the anxiety was too much. The klonopin made her dizzy and zombie-like. She hasn't had any benzos for over a week now.
The neurologist says the lexapro is long gone and recommended a psych consult, however the pediatrician said side effects could last for 2 weeks.
So now we have started clinoril 200mg twice a day for headache and zofran as needed. Zofran blocks serotonin so I'm not sure that's a good idea right now. She's not really nauseaus just no appetite.
Sorry so long and I'm not sure I'm posting in the right forum since she was on an antidepressant. I'm just so tired of seeing my girl suffer and be so incapacitated...I want her to be herself again! I told the neurologist "This is not the same girl I brought to you a few weeks ago!"
Sad thing is...lexapro was keeping her headache at a lower level with fewer flare ups...so she kept taking it believing the doctor when he said the side effects would go away.
Lord, we sure could use a miracle right now!
Posted 10/16/2012 5:29 AM (GMT 0)
Hi worriedmomma, I have a two year old son, 3 next month, and it would tear me up if I had to watch him go through that. I just have a few quick questions for you, have you been to a childrens hospital yet, like St. Jude, or Shriners hospitals, they have specialists that are leaders in their fields, might be worth looking into. My brother is a shriner, I might be able to get you the locations of their different hospitals if you'd like, though I think that information is available online.

Has your daughter had DNA sequencing to check for genetic things like Chiari Malformation? That particular ilness would cause almost constant headaches, at an incredibly early age, doesn't show up on CT scans or MRIs.

I watched my mom go through very much the same issues with Lexapro, it really put her for a loop. I think it was almost 2 months or so before she got over the issues from that. I don't have any advice to offer on that, but we do have members here that have probably used it, and might have some insight for you; we also have a migraine forum, they might also have some insight for you.

I hope you and your daughter find some answers soon. Welcome to the forum, and I hope they're able to get her back to a normal teenage life. Take care, and God bless.
Posted 10/17/2012 2:10 AM (GMT 0)
Hi Matt and thanks for responding to my post.

We've not had genetic testing done...might be something to look into.
I'm comfortable with the neurosurgeon she is seeing for her back. I will ask him about the possibility of Chiari.
It's the psych med for her headache that has me wondering if the doctor knows what he's doing. Thankfully she made it to her afternoon classes today so hopefully the effects of lexapro are on their way out.
Unfortunately vicodin seems to be the only thing that gives her some relief from her back and head pain. Shes so afraid of becoming addicted that she will only take one a day...if that. Who wants their teenager on narcotics? But after seeing what lexapro did to her I wonder...

Thanks for letting me vent and for the suggestions. My girl may have a long road ahead of her. Today she said she thinks she has fibromyalgia...
Posted 10/17/2012 2:32 AM (GMT 0)
Hi Worriedmomma:

I just wanted to say I am so sorry that your daughter is suffering so bad. I have a daughter who will be 20 in Feb. She's had a difficult childhood with multiple health issues and 2 very major surgeries. One being surgery on her head/brain.

I know the agony that we go through when we see our kids in pain. We just want to trade places with them. Please come and vent whenever you need to. We all understand how hard it is to be in chronic pain, and we also understand how hard it is on the ones we love.

I hope they figure out something for her quick so that she can get to a point where she can enjoy life w/o pain.

Hugs,
Barbara
Posted 10/17/2012 2:33 AM (GMT 0)
When was the last steroid injection? Have you checked to see if she got the contaminated medication?
Some of those symptoms sound like meningitis is a possibility.

Once that is ruled out it may be time for another MRI of her head just to make sure nothing organic is going on.
Posted 10/17/2012 2:54 AM (GMT 0)
I took lexapro for a while for depression and the withdrawal is terrible. I didn't have issues while on it though. It is a med that needs to be SLOWLY titrated off of. It is so hard to watch our children in pain. I agree that genetic testing may be a good idea. I would definitely agree that a consult with a children's hospital would be a great idea. They know what they are doing. St Jude's or Children's in Philly are great. Most of the children's hospitals nationwide have great reputations - not sure where you live. Has she tried migraine meds such as cymbalta or depakote? They may help. It is so hard to not know what the problem is b/c then you don't even know which specialist to see! All in all, I have learned it is best to see specialists attached to major hospitals - preferably university hospitals rather than private physicians. They tend to have more credibility and oversight. Please keep us updated.
Posted 10/17/2012 3:40 AM (GMT 0)
Thanks so much for the love and concern!!!

We are in Indianapolis and going to IU Health for her back. Her neurosurgeon does pediatrics and adults and comes highly recommended.
She got her steroid injection the same day the news broke about the meningitis. IU says they did not purchase from that distributor. But believe me...it has crossed my mind!
Her headaches were initially evaluated by a pediatric neurologist at Riley children's hospital associated with IU several years ago. She reacted so poorly to elavil and paxil that she swore off any meds. She had just been managing her daily chronic headache by staying active and sheer willpower. It was a trip to the pediatrician for leg pain that started this 2 month medical saga. Pediatrician mentioned pain management dr but ended up referring her to pediatric neurologist...not assoc with IU but reputable large neurology practice in town, however I think we need another opinion on the headache.

She went to afternoon class today and stayed for swim practice...plans to go to 5:30am practice tomorrow and class all day. She is the strongest (most stubborn) person I know!
Posted 10/17/2012 8:57 AM (GMT 0)
Hello and welcome.

I am certainly no Dr and honestly have very little to guide the information that I am going to give (except personal experience), but I had some similar issues when I was in college with the headaches and the medication reactions. It wasn't found until much later that I was having serotonin syndrome and the migraine meds are generally messing with the serotonin so they were making things much much worse. It was as if the headaches were so bad I wanted to do anything to get rid of them, but then the medication made me feel like my heart would explode then like I was going crazy. I started to get "labled" then as having psychological issues because of anxiety attacks and the other things caused by the meds.

I now know that I cannot take any SSRI's or SNRI's or I will have these horrible reactions. Some are uncontrollable shaking, headaches, panic, general anxiety, rapid eye movemements, sleep issues, and many others. It took years to know exactly what was going on. The same thing happened with the allergy medicine Allegra (but nobody knows why) because it does not happen with other allergy meds.

I mention all of these things only because your daughter may be very very sensitive to medications (especially at her age) and it may take quite a while for the meds to get "out of her system". My headaches did eventually get better and are now quite rare (despite a few now and again when I accidentally eat MSG or something like that). Apparently they were an issue related to hormones and to proper blood flow that wasn't found until I had lost several children due to the blood flow issues. When we solved that problem, we solved the headaches.

The one thing I do now to keep them at bay is to take Magnesium daily. It is obviously over the counter as a suplement you ingest or can be absorbed into the body by using Epsom Salts baths. I am not giving medical advice in any way, but if your daughter's Dr has no objections to her using the suplement, then it may be worth a shot...... Besides, an Epsom Salts bath may help her poor aching muscles and back to feel a little better too. It has done wonders for my headaches and I have been told that I will always have to take calcium/magnisum daily forever.

I wish you all the best!!
Posted 10/17/2012 12:26 PM (GMT 0)
Hello Worried mom

No wonder you are worried about your daughter, no mum likes to see their child hurt and not be able to help in any way. I am on lexapro and have had no issues, although it did take a long time to get up to the recommended dosage as the side effects were awful. I think she is better without it though, what she went through sounds horrible. I am glad you didn't have a psych evaluation, her problems seem very real to me, and in a girl of that age it would seem to her that they didn't believe her. Kids that age need to be handled sensitively.

I can't offer any help, but just wanted to pass on my best wishes and hope that she gets her problems resolved soon.

Take care

Jane
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