I think that meds can be very useful. I also think that meds can create issues that were never there in the first place, and can cause one to end up chasing one's tail after each new issue... to the point that you become far removed from the original issue you took the meds for in the first place.
L is a fairly typical teen in that she has her mood swings. She's also very very sensitive, and very introspective. And she hates to be anything but perfect, or at least perceived as anything but perfect. She'll also probably be irked I am writing about this, but, hey, it's my damn blog so tough. :-) In this family we own our quirks and flaws just as much as the positives.
I've worried over the past years how everything has and will affect her. Her bio father's disappearance during her first concussion, the many MANY issues that followed in dealing with him, the emotions she HAS to have somewhere about that relationship, the surgeries, and typical teen stuff... all of it adds up. Chronic pain changes people. Feeling isolated or rejected or prevented from pursuing goals changes people. Eleven, twelve, thirteen year old kids, even fifteen year olds, are not equipped to process and handle everything she's been asked to deal with... and even though I feel good about how Matthew and I have supported, talked, listened, hugged, pointedly asserted and otherwise guided them through all of this, the reality is, none of us are equipped to deal with what we've faced as a family these past 6 years.
But, I think on the whole we've come through... THEY'VE come through... stronger, more self-aware, more resilient. And, theoretically, able to identify and address any unexpected emotional glitches or pre-dispositions that manifest down the road.
When L tried the amitryptaline after the first concussion, it was ugly. She was to take it before bed, and if she did not fall asleep before the med kicked in, it was like interacting with an argumentative drunk (you know how it is: they are 100% certain in the intelligence and accuracy of what they are saying, all the while they are making exactly zero sense... and there is no way to de-escalate the situation because if you don't talk they'll keep coming after you and if you DO try to reason with them their complete irrationality takes over). She'd wake up in the morning knowing she'd been really angry and trying to fight with me but having NO idea why or about what. It was awful, and it didn't help with the symptoms.
I've also heard, and personally seen, horror stories about people getting off of Zoloft.
So in thinking about the two options (propranolol and zoloft) and talking to M, my friend who is a pharmacist, my sister, and L's regular Mayo physician, I decided to go against what Dr. C recommended and go with the MD's original choice, and we started on the propranolol. I haven't told UPMC yet, as I am waiting to see what happens with it. Yesterday was her second full dose after a week of half dosage. She had some side effects a few days during the single dose, including feeling disconnected and unfocused one day with kind of racing thoughts... but it was better the next day.
Now, yesterday she had what I consider a more serious side effect in that she felt like her body wasn't getting enough oxygen while she was swimming, and felt extremely weak. Like, pass-out weak. This is definitely a side effect of the prop to be concerned about, as it is actually a banned performance enhancing drug used by archers etc to slow their heart rate during competitions. That may work well for such a calm sport, but us swimmers NEED the heart to crank it up when we exert ourselves, or our body won't get what it needs to keep going.
So we will give it another few days to see if the side effects fade and any positive effects kick in... and if not, then I will wean her off of it. We discussed trying the zoloft if this doesn't work, and she and I agreed we don't want to do that. She'd rather deal with the headaches. And we can pursue the biofeedback and some other relaxation techniques to help with her self-imposed pressure etc.
This puts us in the position of having chosen NOT to take the main recommendation of the foremost concussion guru. And not having told him yet that we are following our instincts instead of his. Awkward.
I deeply respect doctors, and I admire what these guys are doing. But, as with any doctor (or anyONE, really) I also believe that people bring a paradigm to the table that they seek to follow or confirm. Each time we have been to UPMC one focus of the questions has been whether L's thoughts are making her symptoms worse. I know that they strongly believe in the mental component of PCS... isolation, dark thoughts, anxiety, stress, etc. And I 100% agree that that is an important aspect. But, I also believe that we are more equipped than the average person to deal with those aspects externally, rather than through medication. Our relationship with L is not the typical parent-teen relationship, and I know a lot more about this psychological stuff than most other laymen do, unfortunately.
So, we are going to keep pushing with the vestibular and exertional rehab, and give the propranolol another week or so (unless the side effects get too bad first). L is making definite, albeit slow, progress. Her grades are slowly improving. Her headache levels are taking longer to rise, not getting AS high, and dropping faster. She is back in the pool on a limited basis, although the effects of the prop may limit it more than we had anticipated.
But we are going to pass on the Zoloft. And maybe that makes us undesirable patients. But I've got to be a mother first, and my mother compass emphatically says "NO".
On we go.
21 March 2015
UPMC trip #3
This is a little delayed. I blame C for having surgery on both feet lol.
We went to Pitt for the 3rd time last week, We arrived around midnight March 9th, Enjoyed a visit with my old (yes, in all senses of the word hahaha) friend from school and her husband (and adorable dog, but missed her equally adorable son, sadly), appointments in the afternoon on the 10th and the morning of the 11th, enjoyed a wonderful semi-surprise visit from my sister, b-i-l, and niece (10 hour round trip for 3 hours of face time... questionable sanity but major props for effort lol) and flew home, arriving after 11p.
This visit was a little less productive and kind of confusing, truth be told. L took the IMPACT test for the 4th time since december. We met with Dr. Pierce, the big gun's minion, and she gave us the results of the test and discussed L's symptoms and progress etc. L improved again in all measures of the test, and Dr. P told her that she was now in "normal" ranges. That was a bit of a surprise to L, who certainly does not feel normal and probably is not scoring "normally" for her (but alas we don't know what is normal for her, as we don't have a valid pre-concussion baseline). I could tell from the angle of Dr. P's questions where they were heading in terms of next treatment step, but decided to just listen and watch.
Next we met with the big guy, Dr. Collins, and Dr. Pierce together. He asked L a lot of questions about whether she was having trouble turning her thoughts off, or not focusing on her symptoms. He asked her how important swimming is to her on a scale of 1-10 --- "8" -- and then asked her if swimming is 8, what is 10. L cracked us all up by deadpanning "food". Collins told us that he believes that the headaches are being exacerbated by stress and tension and anxiety L is unwittingly putting on herself over academics and swimming etc. I think he is probably correct. I also think there can be an interesting chicken/egg debate on that, as the headaches are causing the stress, imo, and I think eliminating them eliminates the stress. Not so much vice-versa, imo.
Last visit we were told that L needed to back off. They wanted her to stop swimming and put her on Amantadine to try and break the migraine cycle. She probably only had a headache that crossed into PC migraine twice after that. Of course there is no way to know if it was the lack of swimming, the meds, time, or some combo of the three. Now this time Dr. C indicated that he believed L not swimming etc was part of the problem, and told her he wants her back in the pool. It was very confusing to L, who wasn't getting the difference and felt it was contradictory.
Worse, L took what Dr. C was saying about the headaches being exacerbated by her emotional state, as he perceived it, to mean that her symptoms are all in her head. This led to a very emotionally raw and angry L as we headed into the appointment with the MD. I tried to find Dr. C or Dr. P to ask them to explain what they meant, but they'd already zoomed on to the next patient.
Dr. C had told us, as we headed to the MD, that he thought there was a perfect second med to try in combo with the amantadine, and that he felt confident it would help a lot with the headaches under these circumstances. Dr. Woods, the MD, laid out three possible options (none of which, as it turned out, were the one Dr. C had been thinking of...): 1. meds used to treat ADD and ADHD, which she said don't affect kids without aDHD the same way. I'm thinking, if they turn HYPER kids into drugged zombies, WTF would they do to L? My NFW face shut that one down quickly. 2. Propranolol, which was originally designed for other stuff but has had success in cutting down on headaches in people with migraines and PCS. My sister tried it for her insanely awful chronic migraines but had to stop it because it lowered her already low BP and made her lightheaded and dizzy and pass-outy. 3. some sort of "tryptaline" that wasn't the one she'd been briefly on during PCS1 four years ago. An antidepressant that helped with sleep and had some effectiveness on PCS headaches.
She asked L a bunch of questions and we asked her what she would recommend for her own daughter. She said the Propranolol, and after we discussed side effects and withdrawal etc, we agreed that would be worth trying.
As we were leaving L ran into Dr. C while waiting for me, and he asked her what Dr. W had prescribed. When L told him, she said she could tell he wasn't happy. Interesting.
The next day we had appointments with Dr. Mucha ( the vestibular lady), and the exertion therapy doctor. Anne (Mucha) has to be one the nicest people we've met. She adjusted L's exercises and surprised her by finding an image of Channing Tatum and printing it out as L's eye target (instead of a boring X) for her. We saw her sandwiched between trips to the PT room, where L did treadmill and elliptical and some dryland assessments, and then was brought back to try "swimming"... in a very, very small 98' pool lol.
The exertion gal wrote up a return to swimming plan that didn't quite meet up with what Collins told L he wanted her to do (one was in the hundreds of yards, using a "paddle board" lol and one was "full speed ahead, but don't do too much too soon"). L was even more confused at this point.
We went back upstairs and met for the wrap up with Dr. C and Dr. P. I do believe Dr. C does really have a handle on L's emotional make-up and personality, and much of what he said, even 99%, is very valid and accurate. But. He told us that he'd talked to Dr. W and they were changing the med prescription to Zoloft. (At this point the prop had already been filled by M at home.) He said it would take up to 4 weeks to see results but that he felt it was the best med to address the anxiety and stress exacerbated headaches he believes L is experiencing.
He addressed L's concerns about the symptoms being "in her head" and explained what I had told her too -- that your thoughts and emotions can make the underlying issue worse, NOT that she is imagining the problem.
We talked some more, he encouraged L and told her he was confident this would all resolve, and we wrapped up.
When we got home we had a bottle of Propranolol and a bottle of Zoloft waiting for us, and a decision to make.
To be continued...
http://fycatd1.blogspot.com/2015/03/meds-meds-meds.html
We went to Pitt for the 3rd time last week, We arrived around midnight March 9th, Enjoyed a visit with my old (yes, in all senses of the word hahaha) friend from school and her husband (and adorable dog, but missed her equally adorable son, sadly), appointments in the afternoon on the 10th and the morning of the 11th, enjoyed a wonderful semi-surprise visit from my sister, b-i-l, and niece (10 hour round trip for 3 hours of face time... questionable sanity but major props for effort lol) and flew home, arriving after 11p.
This visit was a little less productive and kind of confusing, truth be told. L took the IMPACT test for the 4th time since december. We met with Dr. Pierce, the big gun's minion, and she gave us the results of the test and discussed L's symptoms and progress etc. L improved again in all measures of the test, and Dr. P told her that she was now in "normal" ranges. That was a bit of a surprise to L, who certainly does not feel normal and probably is not scoring "normally" for her (but alas we don't know what is normal for her, as we don't have a valid pre-concussion baseline). I could tell from the angle of Dr. P's questions where they were heading in terms of next treatment step, but decided to just listen and watch.
Next we met with the big guy, Dr. Collins, and Dr. Pierce together. He asked L a lot of questions about whether she was having trouble turning her thoughts off, or not focusing on her symptoms. He asked her how important swimming is to her on a scale of 1-10 --- "8" -- and then asked her if swimming is 8, what is 10. L cracked us all up by deadpanning "food". Collins told us that he believes that the headaches are being exacerbated by stress and tension and anxiety L is unwittingly putting on herself over academics and swimming etc. I think he is probably correct. I also think there can be an interesting chicken/egg debate on that, as the headaches are causing the stress, imo, and I think eliminating them eliminates the stress. Not so much vice-versa, imo.
Last visit we were told that L needed to back off. They wanted her to stop swimming and put her on Amantadine to try and break the migraine cycle. She probably only had a headache that crossed into PC migraine twice after that. Of course there is no way to know if it was the lack of swimming, the meds, time, or some combo of the three. Now this time Dr. C indicated that he believed L not swimming etc was part of the problem, and told her he wants her back in the pool. It was very confusing to L, who wasn't getting the difference and felt it was contradictory.
Worse, L took what Dr. C was saying about the headaches being exacerbated by her emotional state, as he perceived it, to mean that her symptoms are all in her head. This led to a very emotionally raw and angry L as we headed into the appointment with the MD. I tried to find Dr. C or Dr. P to ask them to explain what they meant, but they'd already zoomed on to the next patient.
Dr. C had told us, as we headed to the MD, that he thought there was a perfect second med to try in combo with the amantadine, and that he felt confident it would help a lot with the headaches under these circumstances. Dr. Woods, the MD, laid out three possible options (none of which, as it turned out, were the one Dr. C had been thinking of...): 1. meds used to treat ADD and ADHD, which she said don't affect kids without aDHD the same way. I'm thinking, if they turn HYPER kids into drugged zombies, WTF would they do to L? My NFW face shut that one down quickly. 2. Propranolol, which was originally designed for other stuff but has had success in cutting down on headaches in people with migraines and PCS. My sister tried it for her insanely awful chronic migraines but had to stop it because it lowered her already low BP and made her lightheaded and dizzy and pass-outy. 3. some sort of "tryptaline" that wasn't the one she'd been briefly on during PCS1 four years ago. An antidepressant that helped with sleep and had some effectiveness on PCS headaches.
She asked L a bunch of questions and we asked her what she would recommend for her own daughter. She said the Propranolol, and after we discussed side effects and withdrawal etc, we agreed that would be worth trying.
As we were leaving L ran into Dr. C while waiting for me, and he asked her what Dr. W had prescribed. When L told him, she said she could tell he wasn't happy. Interesting.
The next day we had appointments with Dr. Mucha ( the vestibular lady), and the exertion therapy doctor. Anne (Mucha) has to be one the nicest people we've met. She adjusted L's exercises and surprised her by finding an image of Channing Tatum and printing it out as L's eye target (instead of a boring X) for her. We saw her sandwiched between trips to the PT room, where L did treadmill and elliptical and some dryland assessments, and then was brought back to try "swimming"... in a very, very small 98' pool lol.
The exertion gal wrote up a return to swimming plan that didn't quite meet up with what Collins told L he wanted her to do (one was in the hundreds of yards, using a "paddle board" lol and one was "full speed ahead, but don't do too much too soon"). L was even more confused at this point.
We went back upstairs and met for the wrap up with Dr. C and Dr. P. I do believe Dr. C does really have a handle on L's emotional make-up and personality, and much of what he said, even 99%, is very valid and accurate. But. He told us that he'd talked to Dr. W and they were changing the med prescription to Zoloft. (At this point the prop had already been filled by M at home.) He said it would take up to 4 weeks to see results but that he felt it was the best med to address the anxiety and stress exacerbated headaches he believes L is experiencing.
He addressed L's concerns about the symptoms being "in her head" and explained what I had told her too -- that your thoughts and emotions can make the underlying issue worse, NOT that she is imagining the problem.
We talked some more, he encouraged L and told her he was confident this would all resolve, and we wrapped up.
When we got home we had a bottle of Propranolol and a bottle of Zoloft waiting for us, and a decision to make.
To be continued...
http://fycatd1.blogspot.com/2015/03/meds-meds-meds.html
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