We agreed I could try benadryl for sleep since it is a relative of the med my body wants to hold on to. We knew with some caution as it was used to attempt to calm my severe agitation in the hospital last year with akathesia and on the 2nd day it turned against me and further agitated me to the point I was on 1:1 just to stay on an activity. The first night it did nothing. The pill broke and maybe that had something to do with it. Last night I took it and was agitated for many hours. I finally got to sleep at 10:30 but I've been anxious all day and now it's 4 AM and I'm still anxious and not sleeping.
It's just such a mess. From what I've read there is one of the 3 choices that is closest to what I use now. The problem is that it is expensive and I don't qualify for assistance. The 2nd choice I do qualify for assistance and the 3rd one is cheap (ish). But the 2nd and 3rd have warnings that people with headaches shouldn't take it. I am hoping that my 3.5 years of being on an MAOI plus medical competency plus promising all kinds of monitoring will let me get around that, especially since we know these headaches started with increased hormonal changes. And in a controlled situation they are likely to try at least. But I don't know what happens if these fail or my migraines are too much to be allowed to try. I don't have other choices. So I could be facing a really miserable year. I don't think that will happen without a fight but there are just few options.
So I'm anxious and the benadryl feeling isn't wearing off. I'm assuming it's caused mania that I just have to wait out. Mania and anxiety are a bad combination.
I have all this stuff I need to get done that freaks me out too. I have to go to the DMV, I have 2 stops before I see Dr. Mind Monday, I have to get a new social security card which I think has to be done some distance from here. I have to return some jeans to Walmart. Etc.
Essentially I am EXTREMELY stressed and it has kind of paralyzed me. That's unusual for me but I am truly overwhelmed. Back to reading. Soon I'm going to have to sleep on the couch. I hate sleeping on the couch.
Signed,
A very grumpy Jen
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7 comments:
Oh so sorry about all this awful chemistry Jen!! I will pray especially hard for you today.
"Oh Lord, I ask for HEALING in Jesus' name! Only You can reach deep into Jen's body, soul, mind, will, emotions and spirit and carry her through to help and wholeness. Lord, please envelop her in peace and soothe her with Your comfort. May she feel You as the ultimate "weighted blanket," pressing in with a calm steadiness that blesses her in every way.
Lead Jen on the path to the right helpers. You have been so gracious to give her a wonderful team and we ask You to quicken their minds with the right medications and techniques to help at this time. Let Jen find each step to take and give her the ability to follow Your guidance and to have deeper trust both in You and in the competent people You have provided for her. Give her favor to get effective medications.
Help Jen to stay in this moment and to gain sufficient strength right now. Let her unwrap the gifts of the present and leave the future to You. Thank you for Jen's life and her deep commitment to You. Bring her through this troubling time, Lord Jesus, Heavenly Father and Holy Spirit. Amen"
Perhaps there is a different way of thinking about this- you have time to experiment with different medications. In hindsight, this is what my years on disability gave me- time to try different meds, even different diagnoses, different treatment approaches. The oral MAOI's are usually thought to be very effective, I think they are probably more effective than the patch in that they work on both A and B. It could be good a good change. It could be bad. It is an experiment. By the way, Parnate was my favorite antidepressant.
Jean-You're right. I think my problem mainly is that this is happening for no medical reason, no reason at all except that the set up for getting Medicare with SSDI is idiotic and while drug companies must offer assistance programs they are not required to meet any income standards. I am so barely over the line for Emsam that it's not funny, and they just told me where to get a $50/month discount---leaving me $625 per month to find. While I've not been stable (although the last few months have been reasonably so, just not at a well level) the Emsam hasn't been the issue. The depression last year went away as soon as the Mirena IUD was pulled and so it was working. What isn't working all that well is mood stabilizers and those just have no good possibilities left except Clozaril which is for emergencies. There's nothing new coming out soon so I'm waiting.
My dr. believes Emsam has so many benefits from not being oral that it is the best MAOI. However the best part of going to Cleveland Clinic is that there's an expert on everything and when I saw the MAOI expert once in the hospital he told me that he feels just as comfortable with the older ones and they are more cost effective. They are but they are still ridiculously expensive because of not being used much.
I am hoping that if nothing else this fixes sleep. That was the first sign that Emsam worked and I'm hoping that I might get back to having some kind of sleep pattern. At this moment, 8:15 pm I am exhausted because I was up until about 5, but I cannot go to sleep or I'll be awake at midnight. It would be nice to control that better. We had thought maybe topamax would help with that plus my migraines but now it's on hold until we know what else is happening so we don't have multiple reactions at once.
You have made me realize that part of why I'm so anxious is that right now is more about adjusting to what my future seems to hold and throwing a med change that is for only money into the mix is hard. I just stopped a long period of crying constantly while grieving and now things are going to change again, regardless of what is medically appropriate (which is what makes me mad. Changing is not medically advisable and I know my psychiatrist feels this strongly, because I've had so many bad reactions to changing things. Change for financial reasons is disturbing to me.)
I don't know. This is confusing and overwhelming and I just want to find out what is going to happen specifically.
You wrote "I JUST want to find out what is going to happen specifically." That's a huge demand. How can you know? Seems like you're forfeiting a lot of peace as you struggle to figure this out on your own. I re-read my prayer for you. Try it.
Thanks for the email. I KNOW you're anxious to get all the specifics about the new protocol but...yes...you have to wait. I hope you can wait with more peace and less anxiety.
Isn't this classic God Calling excellent?? It's the 12-12 entry and it's a reassuring but HARD word. I hope it builds your faith. Feel free to remind me to re-read it!!
Reminds me of this phrase "Oh Lord, help my words to be sweet and tender for tomorrow I may have to eat them." That is, I'll need to be reminded of these truths so be assured I am saying these things with tenderness. :)
In Christ's love, Michal
Care Free
Perfect love casteth out fear.
Love and fear cannot dwell together. By their very natures they cannot exist side by side. Evil is powerful, and fear is one of evil's most potent forces.
Therefore a weak vacillating love can be soon routed by fear, whereas a perfect Love, a trusting Love, is immediately the Conqueror, and fear, vanquished, flees in confusion.
But I am Love because God is Love, and I and the Father are one. So the only way to obtain this perfect Love, that dispels fear, is to have Me more and more in your lives. You can only banish fear by My Presence and My Name.
Fear of the future -- Jesus will be with us.
Fear of poverty -- Jesus will provide. (And so to all the temptations of fear.)
You must not allow fear to enter. Talk to Me. Think of Me. Talk of Me. Love Me. And that sense of My Power will so possess you that no fear can possess your mind. Be strong in this My Love.
"And it shall come to pass in the day that the Lord shall give thee rest from thy sorrow, and from thy fear, and from the hard bondage wherein thou wast made to serve."
Isaiah 14:3
Hi Jen,
Did I understand you to say that Benadryl was supposed to help you sleep and did the opposite? Just curious - are you certain it is the med you are weaning from that is causing lack of sleep? Whichever it is - TOO MANY changes and TOO MANY questions when calm, stable, and regulated is what works best. It's a rotten cycle (lack of sleep, increased anxiety causing lack of sleep, change, more anxiety, more loss of sleep etc etc etc) isn't it?
You've been in medication "pickles" before and Team Jen has found an answer. Yes, I understand that you now have additional financial limitations, but I still believe that Team Jen (your docs and you) will find a way around this. Yes, it IS a mess, and very difficult to be calm and patient while in the cycle... but try try and pray and try again, ok? And please remember you've been through MUCH worse@! You can do this.
One-thing-at-a-time. You can accomplish much one step at a time. Don't get ahead of yourself.
Also, the thing that stuck out for me in this post is when you wrote,
"Back to reading." Reading? This is pretty awesome, isn't it? Wasn't there a time when reading just wasn't something you could do? Correct me if I am wrong, but it sure seems that is something that has been given back (as opposed to taken away). Like I said, correct me if I am wrong.
I am gonna try to pass the word verification, and then go back to re-read and re-pray Michal's prayer for you.
One step at a time dear girl!
Becky
Becky-
Yeah, Benadryl agitates me. It does this to some small children as well. It didn't when I was a kid but during one of my hospitalizations last year they were trying anything to help me calm down and after 4 or 5 doses I was MORE agitated. So we stopped it and they told me I may or may not react like that again. It was safe enough to try. Sadly, my reaction must be permanent. I had it in the hospital and did fine but I also had been given anesthesia and lots of morphine those two days. (Funny thing, my face was terribly itchy. They figured it was morphine since that's common. Turned out it was my oxygen and as soon as it was removed I was itching from air escaping around my nose. I didn't think of it and should have what with asthma making me familiar but I need pediatrice tubing. I just didn't think I'd be on it that long but I think because my first dose of morphine put me pretty much under and then I needed a good bit of oxygen for a while it was left on.
We're pretty certain that my sleep changed when the other med was stopped. I'm taking a small dose now but it doesn't help.There's no way to know for sure.
I think that they'll do everything that they can. I just know that it's a really tough situation and it's hard to face that. I'm trying to remember I'm only 13 months away from Medicare and so at the very worst we hobble along for 13 months and then get me back on Emsam.
There's more that's hard right now that I didn't realize until about 2:30 AM. I'll write a post about that soon.
Thanks for all the support everyone.
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