Jill44's long road

[Jill44]

FeelingAlone,

 

A friend of mine cleaned out her fridge and brought me grapes. I have strawberries and carrots. Today I'll eat those when I get hungry.

 

Yesterday I went out to do some editing on paper at Panera and oops! An orange-frosted scone in the middle of the day, and cream and sugar in my decaf. Just writing it makes me shudder.

 

Thinking more about the taper, I had a mood swing yesterday and it was ... lighter, somehow. Hard to explain.

 

It occurs to me that it's only folks like us who say things like "I had a mood swing yesterday." It's fun to be in like-minded company.

 

 

Jill

[Jill44]

I decided to remove 20 dots instead of 15 this morning, leaving 130mg. I feel good and I'm very glad to be doing this.

 

 

Jill

[Jill44]

Removed another five dots from each pill for this week. I had forgotten I was tapering until I looked at the calendar.

 

Items from a manicure set plus embossed scrapbooking paper make it easy and fun to count dots.

 

[Jill44]

After the last taper I was just a bit cockeyed for a week or two, no big deal. Now a week or so later I feel good, so yesterday I reduced the dose to 85 mg/day. My appetite is settling down as well, thank goodness.

 

I sort the pellets for a week at a time. I gotta say, counting out 65 dots and putting them into a separate capsule, even with my embossed cardstock to help divide them, is a royal pain.

 

My doctor is retiring, I saw her partner for the first (and last) time. I didn't tediously explain that I'm tapering, so script remains 150 mg/day. I'll explain to my new doc. (I have no shrink, can't afford one, my primary care doc refills my psych meds.)

 

At the Aging Expo yesterday I got a line on a terrific new-in-town family practice doc who is also a geriatrician. Wonder of wonders, she's located very near me (just like my old doc) and she's accepting new Medicare patients. Will get the name and phone number and call her today.

 

The retiring doc switched to computerized records only a couple of years ago. I want to have my old handwritten records in my own hot little hands when I change over. I'll have to pay for a copy, and the file is very thick, but I'll cross that bridge when I come to it.

 

And that's what's going on with me. Happy I am.

 

Jill

[Altostrata]

Stick with 150mg per day, and the same brand of drug -- the number of beads varies from manufacturer to manufacturer and dosage to dosage, which could complicate your taper.

[Jill44]

Starting second week of 85 mg Effexor/day. I just had a couple of emotional experiences of the best kind — joy! Still grinning. I take it as a good sign.

 

Here's a link to my Facebook page with Cmdr Hatfield and a video recording of burglars burgling in my home town.

 

—Jill

[Jill44]

Well, the geriatrician was a bust. I've taken a couple of names from a best doctors website. After I get a doc I'm going to see an orthopod, because I want a definite diagnosis for all the quirks in my muscles and bones. The oddness has descended to my right knee now. Sheesh!

 

Today starts my last week of 85 mg. My emotions and my sleep cycles have smoothed out and I feel fine. I can't wait to get to 75 mg, when I can just take half the dots out of the capsule, put them into another capsule, and have two doses ready.

 

And it took me all this time to learn to pour the dots onto the sticky strip of a black post-it laid on top of my embossed cardstock. If I line them up I can slide them right into the capsule, no wet finger. Double sheesh!

 

Hope you all have a splendid holiday weekend.

 

—Jill

[strawberry17]

Glad to hear it's going so well for you Jill, although counting out beads is something I'm thankful I never had to do, in the UK we have pill trays marked with the days of the week so you can sort out pills ahead, can you use one of those?

[Jill44]

It's not the pill, it's the milligrams. (You probably know this already, but here it is anyway).

 

I put my daily meds into a day sorter, 2 weeks at a time. For Effexor, I empty the 150-mg capsule; it only comes in capsules. I count out 1-mg beads, very tiny, think of the point of a pin, not the head of a pin.

 

Then I put the 85 beads back into a capsule, either the original or one of the ones that my cat's Cosequin comes in, since I empty the capsules onto her food every day. The remainder go into another capsule or into an old aspirin bottle labeled Effexor to be counted out later.

 

—Jill

[strawberry17]

OK I understand now, but you must need a magnifying glass to count out beads that minute!

[Altostrata]

What a great suggestion for bead-counting! Thanks, Jill.

[Jill44]

Well, damn. My right hip and leg are now totally wonky. I'm on pain relievers every day, sometimes 24 hrs a day. I struggle up and down stairs. The knee gives out on me; I don't fall, just sink slowly to the ground. The stress of all this is making me feel tired and tense. I have an appointment with an orthopedist on Tuesday.

 

I've been down to 85 mg of Venlafaxine for what, a month now? I don't think it has anything to do with how I feel, but there's no more taper until I know what's going on with my body and what to do about it.

 

My friend who's dedicated to the medical, and medication, model of mental illness hasn't said anything about it since I started reducing my dose. If she does, I'll deck her, of course. A tense person with a pronounced limp has a right to be a little grumpy.

 

—Jill

[Jill44]

I've decided to go down to 75 mg Effexor. Last night I divided the pellets and it was so easy just to scoop out 75 any old way and drop them into the capsule. Having them all the same and coming out even made a lot of difference.

 

I'm cool with the medical situation. I have a bad leg, that's all. Millions of people have them. I'm going to have a walking cane to help me balance. I have no problem with vanity, I'm looking forward to being more stable on uneven terrain or whenever I need it.

 

I'm going to order the Pretty Purple from FashionableCanes.com.

[Meimeiquest]

Would love to know you in real life, Jill!

[Jill44]

I'm down to 75mg Effexor. It took me six months to reduce the dosage by half, so I guess it will take a year to get off.
 
My diagnosis of spinal stenosis and having to get used to intermittent weakness and frequent pain in my right leg has complicated my situation a bit. Lifelong scoliosis has finally begun to crowd the nerves in my spine. I'm surprised it took this long to get serious.
 
My knee has simply collapsed under me a few times, very gently. It isn't an actual fall, I just find myself sitting on the floor unexpectedly. That's what drove me to see an orthopedist.
 
I'm learning how to exercise (and how not to!) to minimize the pain and weakness and how to handle the debilitating effects of this depressing condition. Everything I read on the medical websites says there isn't much that helps. During my conversation with the orthopod when we discussed treatment and lifestyle changes he kept saying "... but that won't do anything for the pain."
 
I have a cane, I can devise a stretching routine (please, somebody hang me by my feet so my vertebrae can breathe!), I can take pain relievers. I can't "limit activity" as they say to do; my activities are so limited by lack of money that I already feel like I'm under house arrest. But I'm reminding myself that I haven't started designing my lifestyle changes yet. "Progressive" doesn't mean "hopeless."
 
My other problem is this: My brain does not want to brain. I have the stupid. The other day I drove miles in circles looking for a place 3 miles from my house that I know well because I didn't connect the name with the place. I don't seem to be able to think things through, to go from point a to point b, c, d. As I type this, though, I see how much stress I've been under for the past month, what with daily pain and all. The Plan will help me get my thought processes back. Really. I'm sure it will.
 
As always, thanks for listening.
 
—Jill

Edited March 24, 2014 by Petu
fixed text

[Altostrata]

Hang in there, Jill. You'll figure out how to best take care of yourself.

 

I have a congenital spinal alignment problem also. I've managed it for years with Pilates, which strengthens the gut muscles. A good physical therapy program can help you.

[Jill44]

I'm doing much better. I've finally found the right kind of stretches and exercises. Oh hell, that's a lie. Truth is, I've finally started doing stretches and exercises, at least a little, instead of being totally lazy and then complaining later.

 

A few days ago I went to an exercise class called Ageless Grace in my neighborhood where you sit in a chair and move and stretch to cool old music. The teacher is a good-looking young black guy, and my gray-haired compadres seem to be having a good time. I enjoyed it; I'll go again this week.

[Jill44]

Well, today I apply for food  stamps. I have my paperwork ready and I leave for the appointment in 15 minutes. Oh, and did I mention my cat has cancer? She had her spleen removed last week. Happy times.

 

—Jill

[Rhiannon]

Oh, I'm sorry Jill.

 

It's been such a pleasure to read your posts. Your optimistic attitude lightens up my day. 

[Jill44]

Last week my dr. found my white count high, we found no infection, she started me on antibiotics. Weds I became very sniffly & Thursday I felt awful and threw up. By Friday I was fine, just a little tired, same as today. It seems that by total coincidence I had the blood work done just as my white blood cells were revving up to do battle. Amazing.

 

I've been tapering for eight months. My last dosage stayed the same for four weeks and I started another reduction last Monday. It seems that all this stress on my system had its effect today, when I had a meltdown at the grocery store. I went to four supermarkets looking for the food my cats eat. First one was for sale items, it and second one didn't have the catfood, third one I tried to buy it but it didn't check out at the sale price, I had grabbed the wrong size bag. Beginning to fray around the edges, I left without it.

 

Fourth store had the catfood but it was nearly noon and crowded. S L O O W W lines even at the self checkout, I waited, fidgeted, began to go mad. Finally checked out and the damn thing wouldn't take my cash. I descended into meltdown. It seems a new screen was asking how many bags I needed (we have a 5¢ tax), and then it went to ANOTHER NEW SCREEN so I could say I brought a bag and claim the 5¢ off my groceries. By this time I was shaking and mumbling and being helped by an employee. When I got outside two people asked if I was all right and I started blubbering, tears streaming, talking about the computer. I finally assured them I was all right. My humiliation was total.

 

I haven't had a meltdown like this for over a year. I thought it would never happen again. I realize I had three kinds of stress going, four if you count my constant financial panic.

 

I see Effexor as a scorpion with its claws into me, fighting to hold on, when things like this happen. And I will stick with this taper. I'm on a steady pace, down 2/3 dosage after 2/3 of the year. The symptoms will clear. The scorpion will not win this battle.

 

I'll get $16.00 a month in food stamps when they send my EBT card. I'm grateful for the assistance but I keep thinking of other people at my income level who have greater need and get the same amount. I wish them more, if not myself.

 

Sorry for the ramble. I'll be much better in a few days.

 

—Jill

[Rhiannon]

Jill--

 

I've been concerned all along for you about what seems to be a fairly rapid taper, particularly for one of us gifted-in-years type folks, particularly for anyone with a decades-long history on psych meds.

 

Please be careful about that. Don't fall into the trap of forcing your body to follow a calendar goal that you've made up your mind about. That gets people into so much trouble.

 

If you had broken a bone you wouldn't tell the bone it absolutely had to heal within exactly so many weeks or months, right? Well, your CNS is no different. It heals at the rate it heals at. It needs the time that it needs, to readjust its chemistry and regrow the necessary cells and cellular components, turn genes on and off, etc.

 

The only real guidance we have for taper rates is our symptoms. Meltdowns are a pretty reliable sign that it's time for a significant hold.

 

Please be careful.

 

--Rhi

[compsports]

Last week my dr. found my white count high, we found no infection, she started me on antibiotics. Weds I became very sniffly & Thursday I felt awful and threw up. By Friday I was fine, just a little tired, same as today. It seems that by total coincidence I had the blood work done just as my white blood cells were revving up to do battle. Amazing.

 

I've been tapering for eight months. My last dosage stayed the same for four weeks and I started another reduction last Monday. It seems that all this stress on my system had its effect today, when I had a meltdown at the grocery store. I went to four supermarkets looking for the food my cats eat. First one was for sale items, it and second one didn't have the catfood, third one I tried to buy it but it didn't check out at the sale price, I had grabbed the wrong size bag. Beginning to fray around the edges, I left without it.

 

Fourth store had the catfood but it was nearly noon and crowded. S L O O W W lines even at the self checkout, I waited, fidgeted, began to go mad. Finally checked out and the damn thing wouldn't take my cash. I descended into meltdown. It seems a new screen was asking how many bags I needed (we have a 5¢ tax), and then it went to ANOTHER NEW SCREEN so I could say I brought a bag and claim the 5¢ off my groceries. By this time I was shaking and mumbling and being helped by an employee. When I got outside two people asked if I was all right and I started blubbering, tears streaming, talking about the computer. I finally assured them I was all right. My humiliation was total.

 

I haven't had a meltdown like this for over a year. I thought it would never happen again. I realize I had three kinds of stress going, four if you count my constant financial panic.

 

I see Effexor as a scorpion with its claws into me, fighting to hold on, when things like this happen. And I will stick with this taper. I'm on a steady pace, down 2/3 dosage after 2/3 of the year. The symptoms will clear. The scorpion will not win this battle.

 

I'll get $16.00 a month in food stamps when they send my EBT card. I'm grateful for the assistance but I keep thinking of other people at my income level who have greater need and get the same amount. I wish them more, if not myself.

 

Sorry for the ramble. I'll be much better in a few days.

 

—Jill

Hi Jill,

 

As an FYI, some of my meltdowns have been at self checkout lines, particularly ones I haven't been through before where I can't seem to do the simplest task and there is no employee in the immediate vicinity to ask for assistance. I so relate to what you mentioned and I am sorry you experienced it.

 

Please heed Rhi's advice about tapering too quickly. 

 

Hope things get better.

 

CS

[Jill44]

I'm fine now. I'm not tapering too quickly. It seems that it wasn't the taper that caused the meltdown. I've determined other causes. Thanks for your concerns.

[Meimeiquest]

I wish we all could find other causes . Be well!

[Jill44]

Goood mornin' ev'ybuddy!
 
Let's see, where was I. Oh yes... I was at 50 mg Effexor and a friend pointed out I was having symptoms of depression. I added 10 mg, back to 60 mg, for a couple of weeks and then went back down to 50 mg. That worked out fine, no withdrawal or depression. 
 
I'm occasionally using .125mg Xanax (a half of a 1/4mg tablet) to even out my mood, but not often, and that works well. I've gone down to 40 mg now. 
 
Oh, by the way, I'm counting dots by rolling a light adhesive from a little roller onto red paper in 1/4" rows with space between. The dots stick to the stripes and I scoop them up into empty Cosequin capsules. 
 
I was thinking I started the taper in January but it was actually February 20. So it's been 8 months and if I'm done by 12/31 it will be about ten months. I think it will work out that the pills in the bottle will be my last. Lookin' forward to it.
 

 
Jill

[Altostrata]

Great! Thanks for updating us.

[Jill44]

Goood mornin' ev'ybuddy and happy Valentine's Day! It's a snow day Here Near DC.

 

I saw my new doc this week for a med check. We're reducing the dose of one blood pressure med later, changing to a more potassium-sparing diuretic now, and getting me off lamotrigine, of which she said "I never prescribe this!" Since I won't see a shrink, she agreed to call a psychiatrist she knows for advice on tapering the lamotrigine. He said to reduce the dose by 50% every two weeks, so that would be 50 mg for two weeks, 25 mg for two weeks, then none. The only side effect mentioned was the return of depression. I'm not too concerned over side effects, but I'll do the research and be watchful.

 

I like this doctor, so I'm willing to listen to her. She treated me like a queen after all the problems I've had with her colleague, Doctor Disaster (they're in the same 3-doc office), over the past year.

 

I'll let you know how it goes.

 

—Jill

[Jill44]

Wait... did I not post here when I got off Effexor for good on January 1, 2014? Anyway, December 31 was my last dose. Hallelujah!

[Jill44]

Did I mention that my back and leg pain went away entirely by itself a couple of months ago? It did.

[Altostrata]

Yay! Did you have any withdrawal symptoms when you were done with Effexor?

 

I would be more cautious than that schedule for going off lamotrigine. See http://survivingantidepressants.org/index.php?/topic/1122-tips-for-tapering-off-lamictal-lamotrigine/

[Jill44]

I went off Lamictal entirely on March 15. I'm learning about neuro-emotions... Zing! Pow! You're weird! Hmm... yep, this week I redlined my personal Wait, what?-o-meter, but nothing bad has happened. I'm cutting myself a lot of slack. Spring is here, sort of. Winter will be beaten back by the time baseball season starts next week. All's well.

[Petunia]

Hi Jill,

I just read through your thread.  Congratulations on getting off effexor, that one can be difficult for a lot of people.  Its wonderful that your leg and back pain went away, makes me realize just how much damage to our whole bodies these drugs can do.  Since finally being able to get off lexapro, many of my long term health issues have vanished, unfortunately, I'm in protracted withdrawal from tapering too fast.

 

It sounds like you may be having some withdrawal symptoms now from stopping Lamictal. Its possible they will subside, but its also possible that they may continue and even get worse.  Nervous system damage tends to be cumulative and yours may not have been as resilient as it was when you started your effexor taper. 

 

I hope I'm wrong, but if your symptoms persist, you might want to consider reinstating a small amount of lamictal and then continuing with a slower taper.  What dose were you on when you finally quit on March 15?

 

Petu.

[Jill44]

I've been off lamotrigine for about 12 days and I'm all over the map. I feel different every day, some days better, some worse. But I've lost some excess appetite, sugar craving gone, that's the good news.

 

I'm unpredictably irritable, scared, vague, detached, unfocused, angry. I do simple crossword-like puzzles and listen to audiobooks for hours at a time to keep from feeling like my mind is floating. Sometimes all I can do is curl up with one of the cats and watch the few TV shows I like. When I have work (writing/editing) at home I take half a Xanax (.125 out of .25 mg) and a 100 mg Adderall. That snaps me back to normal for a few hours.(Not often, it seems like a weird combo, but it does the job.)

 

Sometimes my cat wakes me about 5:00 in the morning and when that happens and I don't go back to sleep the whole next day is a loss. I can't focus on anything. That's how I am today. Exercise class this morning, then could barely figure out what to buy at the grocery store, came home and just flopped on the couch with Katie cat and watched TV.

 

I have a project I should be working on at home but it's a bear so didn't even try. No deadline, will wait till I'm able. Tomorrow I scan microfilm at the Library of Congress. Nothing like a good hunt for information to push aside the emotions and get the mind working!

 

After a week and a half drugfree I don't want to go back onto Lamictal even in tiny doses, but I might have to if I don't start to level off. I'm trying to keep an open mind.

 

Okay, I'm going back to my audiobook. No, kitties, it's not dinnertime yet. You'll just have to wait. Thanks for listening, guys.

[Jill44]

Petu,

I just read your message. I didn't realize you had posted on March 23, I don't visit here every day. I need to find out how to set up a notification when someone posts. 

 

I planned to take six weeks to taper but I just looked at the calendar and it was only four. I have a terrible sense of time, I really thought it had been longer.

[Jill44]

Now I know what I'm dealing with. It's very specific.

 

I feel like I'm in an undercurrent like that of the ocean shallows. It pushes me back and slows me down, preventing me from doing even the most ordinary things. It's a vague fear of the everyday. It's separate from my real fears and from the awful vulnerabilities that plague me.

 

I have a dozen true fears and dangers, but yet I feel compelled to lie on the couch instead of washing the dishes. I'm a paperwork person, I like to putter around my desk, but I feel like there's a kind of gray curtain between my and my to-do list that I can't penetrate.

 

As for the things that are truly awful, like my catastrophic financial problems and the possibility that my cat has cancer, the gray cloud doesn't distinguish between my dread of those things and my inability to get up and do the vacuuming.

 

Today I gave in and took my patented combo of .125 Xanax + 100 mg Adderall. The cloud has lifted and I'm able to... gasp! write a check and put together the package for my income tax! Write a check for the automatic camera speeding ticket that my town is using to generate revenue grrrr! But I can't exactly take that every day.

 

Now that I'm over the withdrawal and I have a handle on my baseline (familiar from the past, actually) I want to start over with a medication that's targeted and that doesn't fuzz my intellect, flatten my affect or make me sleepy.

[Jill44]

I saw my doctor this morning and she put me on Lexapro. Off to do the research!