Sunday, August 21, 2016

weaning off Lamictal, 2nd attempt. (nasty drug)

Blog entry #1003. Wow. That's a lot of writing. A lot of living.

When I woke up this morning, feeling the familiar dull pain behind my eyes that grows into a mild headache for the past week (or longer), I wondered WHY. It is so tiring and debilitating to live with a dull headache on an almost daily basis.

This round of headaches is most likely from the weaning I am doing from the Lamictal. I am supposed to wean off of it in order to start a daily migraine medicine. The irony of it all.

Last time I tried weaning from Lamictal, about five years ago, it was horrendous, and I couldn't go through with it. I had to go back on it. My body literally could not function on any normal basis without it. I was hallucinating, having horrific nightmares, vomiting, having anger that is like an out-of-body experience, and finally a sort of psychotic break that made me go to a specialist who told me not to go off it. Not yet.

I researched my blog to find a few posts about it, back in 2011:

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
November 30, 2011:

A few weeks ago I wrote about an awful day that I had regarding the wean off Lamictal. I am referring to this post.

Well, that particular day was hell.
I had what felt like a psychotic breakdown. I can't write all the details. I didn't have enough Lamictal in my system, and whatever it was that the Lamictal was stomping down, came up for air. Call it PTSD, but whatever you want to call it, it was deep, dark, and bad. It was triggered by a friend who was angry at me. I couldn't digest that anger like a regular person would be able to. It wasn't terrible anger, just your run-of-the-mill built-up anger from a friend to a friend. These things get worked out and pass in good friendships, like this particular one is. 

But that day, with the Lamictal at an all time low of 5mg (down from 150mg, mind you), I broke at the appearance of this friend's anger. It was a day that, before this phone call, I had been dealing with nausea, throwing-up, and hallucinations from the withdrawal. I later apologized to her for having my breakdown "on her".
The break was horrendous. I couldn't write about it then. Only yesterday, at my psychologist's (Lily, my once-every-two-weeks visit) office did it all come up again.
The next day after the psychotic break, as I am calling it, I went to a specialist; a psychiatrist who specializes in psych meds. He simply told me that: if it is awful on this low dose of Lamictal, than go to a higher dose. He explained to me that not everyone can go off medicines just-like-that. What about the contraindication with the Lyrica? Well, he said, on a low dose of the Lamictal, it isn't so bad. Is it *ideal*? No."But", he said, "is any of this ideal?"  Any other drugs he thought of to switch-to would have been, he said, much more toxic for me.
So I am now on a low dose of Lamictal-- 25mg. I am mostly stable, thank Gd.
But, I am more tired, and I am more depressed. That very well be because of going down so drastically on Lamictal. I haven't been depressed like this in a long time, you know? I'll make an appointment with my regular psychiatrist. It's just that I don't like her so much, but she is the drug decision-maker.
None of this is ideal. 

~My pain is, I'd say, 75% under control. The Fentanyl patches are at the right dose, thank Gd.
~The new cream seems to be the right one for Gapey's perma-rash... it is getting lighter and doesn't hurt/itch anymore. The graft is getting better....
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

There are many articles and blogs about withdrawing from Lamictal. It's pretty nasty stuff. Here is one of the more scientific ones:
For many years I have been taking 150 mg per day

I have been on it for NINE years. One attempt at going off, and I couldn't do it. I was on Fentanyl at the time, though, so that may have complicated things. I have had 150 mg of Lamictal in my system more or less for the 9 years since the PTSD came about.

I recently got to 50 am/50 pm, which is what I am supposed to be on in order to start the migraine medicine (Depilept). But as I am starting the migraine meds, I am supposed to keep weaning from the Lamictal until it is totally gone.

For a long time I have been convinced that I no longer need the Lamictal, but there is always too much going on in my life to randomly wean from such a strong drug. I have been through many weanings of hard drugs, we know that. It always sucks, we know that, too.

I am having some adverse effects from the Lamictal weaning, mainly headaches, which I have so often anyway that I don't know what to attribute them to. Yesterday and today, though, I had unbelievable tiredness. I basically slept all day today, but also needed analgesics to ward off a migraine. I took a sleeping pill in the middle of the day, which I never do, but I knew I needed deep sleep or the migraine would come on strong. My body literally forgot how to sleep deeply on it's own. I honestly do not know how I am ever going to go off the also 9 years of sleeping pills. It will probably be the next weaning. I am terrified of it.

Yesterday a friend came over. She has also had her share of horrendous medical things. But she went right back to work as soon as she could. She has been through a lot over the years since her medical crisis, but through it all she maintained her work. She told me very strongly that my biggest problem is that I never got back to work. I need to work, she says, in order to get back on my feet finally, and be back in life. I tried to explain to her why that is OK for her, but it hasn't been successful for me. She admitted that she doesn't have the medicine thing going on... she never had to take any hard drugs after her medical crisis. She also never needed another operation since that one. I've had 7 others, and lots of hard medicines. It's not a competition, but it is hard for me to come to terms, STILL, that I do not work. Especially because I miss my work, and know I'd be good at either of them (my careers) if I were to return. I tried to explain to her that I really cannot be responsible to someone else besides my family. That I can't always show up, no matter how important the expectations are. On my plate now is all I can handle. She says that if I had more on my plate, I'd handle it, too, it's just a matter of perspective.

But she doesn't have my particular set of circumstances. My problem is that I can't say that it's because of this (X) condition or disease that I am not working. I don't have any chronic diseases or illnesses. I don't have a label for why I am how I am. I just know that ever since I had necrotizing fasciitis in 2007 I have never been the same. Serious diseases and surgeries throughout the years, the medicine trials, going on then off them, the consistent pain, it all takes a terrible toll on one.

Oh, speaking about pain, my newest surgery on the right hip (not quite a year ago) is hurting a lot these days. I assume it is from the weaning. When I weaned from the migraine analgesics also the hip pain flared up.

And the restless leg syndrome is alive and kicking... also a result of weaning. Makes sleeping just that much harder. Nervous systems do not like weaning from drugs.

My fantasies of working again are ruminating in my head. I could do birth preparation courses... that is on my time, not answering to someone else's schedule. I built an awesome course years ago.
About playing music again, I feel it is too big of a job. Hard to get to a decent level again, and too many people to be answering to, too many people depending on you. But the question is, should I push  myself to work? I haven't yet. My kids are my work.... and it's quite full time.

My health is my work. I wish it wasn't. Maybe when I am off the Lamictal, and if the migraine medicine really works as a prophylactic, I may be available to work again. One day at a time. The hill before me is weaning off the Lamictal... and I foresee it being a very difficult climb. But when I get there, I will be so relieved. I came off of five years of Fentanyl... a class "a" narcotic. I can do this. I hope. It's scary, though, knowing what I know about this particular medicine.

I need to get back to the gym.

My mother passed away about 7 weeks ago, and I am still in shock, and at times a bit like paralyzed with that reality.

My house was robbed, and my gym clothes have mysteriously vanished. Completely vanished. The robbers stole many types of things that robbers steal, but my gym outfit? Yet, I cannot find it anywhere. I had to put back together my closets, one piece of clothing at a time after the robbery, I know exactly what is in there. I have checked everywhere. Really? Steal my gym clothes? Well, we'll put it on the insurance claim.

I can go back to the gym anyway, And go I must. It'll probably help the leg pain, too.

Friday, August 12, 2016

I gotta say, things are really rough

Definitely a rough patch over here.

Very rough.

Yes, I know things could be much worse, so having acknowledged that, let's proceed.

Cleaning up after the robbery has been awful for me. I had no idea how difficult it would be. Robert has been helping, too, of course. It seems easier for him. He said he kind of has a layer of teflon; things roll off him easier than they do me. In general he takes life with less angst than I do. Thankfully.

I have been going very slowly with these messes the robbers left around the house. Mostly concentrating on my bedroom, which got hit the worst. It's a huge bedroom with a lot of stuff stored, it is a lot of work. At this point, I miss my organized house more than I miss the things which were stolen. Organization in your outer world helps in organizing your inner world. It's so true for me.

Every mess I tackle comes with anger, sadness, and a kind of repulsion that the robbers disgusting hands were on all my stuff. That's what everyone means when they say it's a huge violation.
I've had a few bikes stolen in my life, but in all the numerous apartments I've lived in, including inner city Boston, the poor side of Cambridge, and inner city Manhattan, I've never been robbed. I guess I've been lucky until now.

It'll get done. We are almost there.
Then we have to make a claim to our insurance, get reimbursed, and move on.

I'll miss the silver kiddush cup we had under our wedding canopy for our marriage kiddush (which we used every week for 18 years to make kiddush every Shabbat), all the children's "bechers" (silver kiddush cups without stems) with their names engraved on them from when they were born; my parents bought each one of them when the kids were born. The set of cute small cups from my brother Peter we use every Passover, our havdallah spice container, the kiddush cup from Robert's aunt to his grandfather (also sentimentally engraved), I could go on. Everything that was stolen was sentimental. Well, not everything, but many things. I won't even go into my jewellery. I'm sad about two things especially... an antique locket with diamonds on it; a gift from my father for my 16th birthday, a gold chain I bought with the first hundred dollars I made as a waitress at my first job in Boston; a symbol of my independence. You get the idea.

Again, my mantra these days... you can't take it with you.
I just buried my mom... that mantra is very poignantly with me these days.

On the headache front:

Not good. Pain is never good, unless you are giving birth. Which I'm not.

I saw my neurologist a few days ago. The good news is that the "thing" that the MRI showed is nothing to worry about. It's not what is causing my migraines, that's for sure.

So, we move on to medicine trials. Joy. I hate playing around with meds, trying new things. No choice, though. I can't keep showing up to the ER with blinding migraines.

I am now starting to lower the dose of one of my meds, and when it gets to a certain dosage, I should start on the new prescription for migraine prevention meds. Weaning off a medicine, again. It's never easy. This particular one, though, I am pretty convinced I no longer need. It just hasn't been evaluated in a long time, I've been on it for eight years. Time to go off it anyway. I pray the withdrawal isn't too crazy. Pray with me, OK?

The proposed new migraine medicine is something I have taken before, and I don't remember why it didn't work out. My neurologist wants to take a chance on it because everything is different now that I am off the Fentanyl, and off the daily analgesics. How I reacted before, he feels, has little or no bearing on how it'll be for me now. We'll see. Another "lab rat" few months ahead of me.

For now, I am dealing with the third day of a nagging headache, but not a migraine. Nothing is working to take it away, though. I just took my SOS steroid pills, hoping it won't turn into the migraine it feels like it's turning into.

Yeah, I'd call this a rough patch.
In a way it makes sense with Tisha B'av in a few days. Doesn't make it easier, though.

For today, Shabbat Shalom. I mean it with all my heart. Shabbat Shalom.

Sunday, August 7, 2016

The storm after the storm... praying for calm

(this is not as up-to-date as today, but I'll catch up with more when I can. Life has been c r a z y.)

August 3rd

I'm presently in a lovely, quiet lounge at the airport in Munich. I have a few hours before my flight home. I've been away for five weeks. It's been a very intense five weeks.

I still can't believe that my mother is gone.

One thing that struck me strongly as I stood at the cemetery, tearfully shoveling dirt into her grave, was the old saying “you can't take it with you”. In the end, death is just between you and Gd.

I didn't know then that it would be a reminder I'd have to use in my very near future... when I found out this morning that our house was broken into while we were gone. Robert and the kids arrived home safely yesterday (thank the Good Lord for their safe flights), and found the house in shambles. Things were strewn everywhere, a large-scale robbery. Police were called, investigation happened already, under Robert's diligence.
The neighbors had no idea.

I don't yet know what damage to expect. Lots was stolen. I can't even think about it. Robert said my closet cannot even be entered (it's a walk-in), it's totally blocked with all my stuff everywhere. Can't say I am so looking forward to dealing with this.
(but yes, thank Gd we have insurance for everything)

I also am going on very, very little sleep. Like for about three nights now, I have barely slept... one night not even one minute. I just read a lot and listened to podcasts.
I ran out of my sleeping pills. I called my father's doctor to see if he would write me a prescription for them, but it turns out that that particular ingredient of sleeping pill is not used in America. He looked under generic categories as well as brand name, and it is manufactured and prescribed only in Israel. When we discussed the possibility of giving me a different type of sleeping pill, he was very uncomfortable with all the medication allergies I have. He said that it's not a good time to experiment. He's right of course. He gave me an anti-anxiety pill, but it doesn't work for me. No sleep. At all. My body literally forgot how to fall asleep. I just had an 8 hour flight, I took two of the anti-anxiety pills beforehand, but they did nothing. I watched a movie, read my book, walked around the plane, watched part of another movie, read more.... you get the idea. Now I don't know if I should stay off them and try to wean, or go back on them so I can get some real sleep. It's a very hard decision. Not as easy as you probably think. My body has been trained to sleep with these pills for NINE years. Every night. That's a *lot* of time. It's the longest time I've been dependent on any medicine. I want to be off them, but with what is happening now, not sleeping at all, I don't think I can take it. I don't know how to proceed.

Robert read on the internet that it could take years to wean off this particular sleeping pill, and be rid of side effects. What I know is that being off them for four days didn't do anything except make me not fall asleep. I don't know what to do.

Most of this trip, though, except for a few epic migraines, I've been very strong. I've surprised myself with my strength- both internal and external. Very minimal hip pain, too.

Mostly I am worried about my dad now. It's the first time since his wife of 58 years passed away, that he will be in the house without other family members. Me & my family stayed with him in the house for almost 4 weeks, and the week before that was the week of shiva, when my brothers and I stayed the whole time, and many people were in and out all day and evening.

My mother's aide, bless her heart, is staying with him, still living in the house.
I don't know how permanent or temporary that is. There are many unknowns. I hope he will come to Israel, and maybe even stay so we can be near him. He really thrived when we were around him a lot. I especially loved hearing him singing some of his old Yiddish songs to the kids.

It's going to be very hard on him with this transition. It was so hard for me to leave him this morning.

Things are rough all over, I guess.

It's our job to love, to give, and pray for health. All the other stuff? You can't take it with you.

Monday, July 25, 2016

Feeling kind of numb. Except for migraines.

Day 26 in New York.

My mom passed away 27 days ago.

I don't know how or what to write. I feel down most of the time. I can't pinpoint a specific emotion, but down kind of covers it. As down as I am, my father is a thousand times more down. Many things are forever changed in his life, and there is no map explaining how to proceed.

There actually is never a map for how to proceed. If life were "Waze" it would "recalculate" the route every 3 seconds.

I feel kind of numb.

I kind of lost my mother slowly over these past five years that she has been ill. I realized then, maybe about four years ago, that I no longer have her as a mother, in the definition we understand as mother, in our young years. She became another mother in my heart. Over time, she couldn't even hold a phone in her hand for more than a few minutes, and had no capacity for real conversation, at least over the phone, which is all we had.

Losing her body now, and looking at the last picture I have of her- the one of she & I together in her bed- it doesn't really register. When I look at the picture I posted in my blog, it doesn't even look like my mom. I almost don't recognize her. Her vibrancy was already gone by then.

So losing her physically now, well, I don't know. At the same time I say her vibrancy was already gone, this house is ghostly empty without her, even though she was living in only one room of the house for almost five years, without mobility whatsoever. Even though she slept most of the time, as long as she was alive and living here, this house was alive. Now it just seems like a bunch of old dusty things without sentiment. Every corner of the house is decorated by her. My dad walks around here lost and confused. Very confused. I'm worried about him.

I don't know how I feel about the fact that my mother just passed away. I don't know. I have no words, and almost no feelings. I am also just walking through the house, and trying to take care of my kids, and just going through the motions. I just want to sleep.

I miss my home. By home I mean Israel. I think my feelings are there. I'll probably find them there once I return. This trip is so, so long. I feel like I've been here for many months already. I'm tired emotionally and physically.

Wound up in the local hospital the other day. A migraine that speared through my head and made me see white and black at the same time behind my eyelids. After throwing up, I knew there was no way out. I took the pills that were at my disposal to try, but what I took, while it would have put an elephant to sleep, didn't give me any rest at all because I was in such intense, vicious pain.

We showed up at the ER in Glen Cove at about midnight. We left without my father or children knowing; everyone was blissfully asleep. My mother's nursing aide is still living in the house, for the time being, so I knew things would be OK if my father woke up.

We were taken care of pretty quickly. There were only like two or three other patients there, I think. I had my eye shades on, and was just rocking and moaning in pain, and Robert did the explaining. Within an hour I got my "cocktail" of IV meds that I know can rescue me from the pain. The ER doctor said she'd not usually give those meds to a migraine patient, but in my case, I knew it worked, I have a lot of allergies, and we were not discussing other options. Not at that moment, anyway. Robert had even brought a print-out of the evaluation of my recent brain MRI, just in case they gave us trouble, just to show that I am getting treated for the problem.

Anyway, I got relief, and even dozed a bit there in the ER when the meds kicked in.
We got back to my father's house (my parent's house...) at 3:30am. Not too bad.

I've had what I call migraine "remnants" since then. Not a headache, but soreness near my eyes.
I now have the "cocktail" meds in oral form, in case I need them. That's good, but I'm not sure if they will be effective going through the digestive system. I assume I'll report on that at some point.

Anyway, enough about me.

I have to muddle through the next 10 days before I'll get home.
Then, as soon as I get home, I'll be worried about being away from my dad.

Here is a random picture from my high school years, or early college years... we know that because of my big 80's hair. :)
The menorah in the forefront is from Jerusalem, made of Jerusalem stone. We had just bought it for them. My brother Peter brought it with him from Jerusalem at the time.

The copper coffee set, clay bowl and chess set are still on the same table in the living room, in the exact same positions. The more things change..... well, it's actually not the things that change at all. They do stay the same. The people change, though, a lot. So much.

(btw- this is my thousandth (1000th) post to this blog!)

Friday, July 15, 2016

All good things must come to an end

My days have been filled with vacationing, doing fun things, my family, my father.

And two migraines have ambushed me.

My nights are the worst, though. I've been having creepy dreams, then I wake up, and all the sadness comes to me in a big wave, overtakes me.

By day my father needs me to help him through his grief waves. My own can't coexist with his. He is so depressed to have to set out on life now without his wife of 58 years. I can't imagine. All I can do is offer support and make sure he knows we will not leave him living alone in his house. We are looking into options.

At night my sadness comes out to get attention. First in the disturbing dreams, then after I'm awake from that, all this stuff ruminates in my head. I no longer have a mother.
Thoughts of her alive and well dance around in my active imagination.

I have a very sick friend in the hospital in Israel (I'll call her S). She weighs heavily on my heart, too. She is getting worse. We pray that the doctor Rav Firer recommended can help her out if this mess. Please pray for Shoshana Chaya bat Bassie. Give it all you got.

We're leaving the Connecticut house today. It is presently dawn here, and I have half a mind to go down to the dock- a few meters away- and take out a kayak in the lake, and coast in the quiet. But we had a rainstorm last night and the day is overcast and humid. And I should try to get more sleep. I'll miss this lake, and the kayaks, canoe, and paddle board.

It was a good week.
I wish that my mother could be been with us, she would have loved it, and seeing the kids so happy and enthusiastic.

I miss her so much.

But right now, my dad's grief needs to be held and loved. None of this is easy.
I'm going to shut my eyes for a while before the busy day starts.
The anti anxiety pill is kicking in.

Shabbat shalom from me to all of you.


"blue" in the butterfly house in Norwalk aquarium