☼ Mattinsmom: update

[Meimeiquest]

We need an Amy report! Remember, this is come-as-you-are

[Nikki]

"This up and down crazy thing is typical and normal for people going through psych drug withdrawal. You may not be able to see it yourself right now (when I am in your situation I never can) but it is clear to me that you are slowly stabilizing and healing. Stress knocks that all out of whack, which is typical and normal. Later, further along in healing, you will be able to tolerate more stress."

 

Rhi from your lips to God's ears   Amy this really jumped out at me.  From reading your posts I get the sense that you are healing.

 

Rhi is so right about not being able to see ourselves clearly.  Most of the time now I only have glimpses of being okay.

 

Part of the psych drug WD......

 

HUgs

[Wolfhound]

MM, just wanting to tell you I am thinking of you and I am here for you if I can be of any help virtually feel free to write me. You have always knew how to help me through writing ....

I sincerely hope that this wave will be short and will cease to bother you soon.

I also hope you are going to see glimpses of windows ...

I am sending you many hugs across the ocean.

w.

[mammaP]

Mamma hugs on the way too. This will pass Amy and the window will open again. 

Thinking of you and hope that you are coping. x

[mattinsmom]

I'm sorry

 

Did not mean to drop off the face of the earth. I'm ok. Random life stuff popping up that has to be dealt with, like finding pellets to heat my house, Oddly busy (?) Plus my mind is too busy and body can't keep up. By the time I hit a computer I'm exhausted and I can't see to to hit the keys. Long story (ies). I'm sure they will make it here soon.

 

Thank you all for checking up on me!

[Meimeiquest]

That we can live with...you disappearing, not.

[mammaP]

That is great to see Amy, that you are busy and coping with it all. It's understandable that you are

too exhausted to  get on the computer.  

[mattinsmom]

I've run out of steam. I thought I was juggling things ok but I'm just not. It is life, with stuff popping up everywhere but I am also trying to get ready for a trip. Its just too much. I've been eating, I've been exercising, Saw my therapist and my chiropractor, sleep is what it is, I spent yesterday sitting in the sun but couldn't hold onto that "good" feeling.  I am totally shutting down and I kinda don't care. 

 

My trip is already paid for, tickets booked, and I don't know that I even want to go. This is one of those life-changing, dream-come-true trips and suddenly I'm like " 'Eh - whatever".

 

This is what I felt like on the meds. This is why I wanted to stop taking them. Really wondering why I bother. Thinking I'm going to hibernate for a few. 

[Meimeiquest]

Can you get credit for the travel money if you reschedule? I, heavy sigh, just stayed home alone for a week while my family was in Florida. But for me, that's better than a come-apart as they say in TN.

[mattinsmom]

I'm sorry that you missed time with your family in Florida. I can't re-schedule my trip. This is a shamanic apprenticeship in Peru. 16-days of intensive training and personal healing sessions with Peruvian and Incan shamans. Its a really big deal. I'll go, and it will be profound, I just wish I was as excited about it as I was a month ago. I "know" this is exciting and something I want to do but I'm not feeling it at the moment. Then again, I'm feeling like the walk to the bathroom to pee will take too much effort. I'm about to find out how long I can hold it for.  

 

I know I'll be ok. But, I'm looking at a checkbook that needs to be balanced and money that needs figuring out. And I think I just told my best friend that I don't want to be friends anymore. And I think I might mean it. And this time she didn't do anything to deserve it except for getting over me faster than I am able to get over her. 

[Petunia]

I'm thinking about you Amy and hope you feel better soon.  Perhaps a few days of hibernation will do you good, sometimes that works for me.  I'm sure your trip will be wonderful, once you get there, its hard to get excited about anything when we are exhausted.

 

(hugs)

Petu.

[Wolfhound]

Hi, I know exactly what you mean...I know I should feel something because I have always felt it before my drug experience and I simply cannot, it´s not there, no more. I only remember what it felt like and it always brings tears in my eyes seeing myself so flat.

But I think that when you were looking forward to this incredible experience a months ago, even if you are not feeling it right now, you will find that positive feeling inside you. When it once was there, it will find its way through the sediment of tiredness and lack of emotions you may have now (well I don´t know it of course but I got the impression from your writing)

I wish you a wondeful, profound and life changing experience. w.

[mattinsmom]

The fact that I have 30 notification tells me that it has been too long since I have been here.

 

I'm doing ok, just really busy.

 

We've had a bizarre winter this year and ran out of wood pellets about a month ago. We went through 5-tons since October! Apparently everyone else has run-out as well because the stores cannot keep them in stock. People are only able to buy 10-bags of pellets every week - when they have them available. So, once a week I've been driving out to the store to pick up 10-bags. At the store there is a nice person with a lift who loads them into my car. There is no person or lift once I get them home and somehow I have yet to get home when my 2 big, strong, man-boys are here. The bags are 40lbs each so once a week I've been lugging 400 pounds of pellets into my house. By the time I'm on the 10th bag it feels more like momentum has taken over and I am running behind it. But, I've done it! 

 

I've been preparing for my trip. I can't believe I am leaving in 2-weeks. Every day I learn something new about the places I'll be staying that makes me question my logic. Yesterday I learned that bathroom facilities available on part of the trip will most likely be a hole in the ground with a little privacy wall around it. Ummm? Yup. I might have to buy the book Everybody Poops to get past knowing that everyone will know  

 

Preparing has taken a lot of time and thought, especially packing - I will be carrying everything I bring so I am trying to pack as lightly as possible. Generally speaking I have 2-types of clothes; really nice and things my boys have outgrown. Neither of those are appropriate for what I'll be doing. I went shopping and even tried things on before I bought them. (I hate shopping but found the cutest little hat). I need to go out again and look for just a couple of long-sleeved shirts and socks!!! I cannot find good socks!!!!  The weather will be between upper 30s and upper 70s depending on day and altitude. Long underwear and yoga pants will be my friends on this trip. Lightweight and easy to carry.

 

The water in Peru isn't safe for drinking so it all comes bottled. My oldest has a camel bladder (like a big rubber balloon with a hose/nozzle) that he is letting me borrow. It holds 100oz and fits in my backpack. I'll use the bottled water to fill that. This way I won't have to carry 8-10 bottles with me. It weighs roughly 10lbs when full so I have been walking around the house/climbing the stairs wearing it to get used to the extra weight.

 

My insurance company doesn't seem to care that I will need meds while I'm gone and won't fill scripts early. Only 1 of my prescriptions will technically need filled while I am gone. Luckily it is Omeprazole and is only $17.  I have enough of the rest of my meds squirreled away so I will take from there and re-stock when I get back. It is terrible the lengths we have to go for meds we don't want to take.

 

I've had some significant moody moments and I'm ok with that. I'm working through a lot of stuff and sometimes I just need to cry, yell, swear, laugh, whatever. It is what it is and it passes when it passes. I do try not to take my moods out on anyone and I think I've done alright with that. I was noticing that taking lorazapam in the afternoon made me really lethargic and my sleep was getting a little sketchy so I gradually moved that dose back up to bedtime. I'm sleeping about 6-hours a night - heaven! I'm guessing that moving the lorazapam is probably contributing to my moodiness but it will settle down. I didn't change the daily dose just the timing.

 

And now I'm tired. Tomorrow I have to do a bunch of research and prepare documents for a meeting at my son's school. Meeting is Thursday. He's not in trouble or anything. Its a special education plan meeting. People get weird because his "special need" isn't obvious so they question if there is one. Its neurological. We do this once a year but the big re-eval/determination is this year. I've presented so much information in easy terms over the years only to be asked "what is wrong with him" again and again. I've decided that this time I am going to hand out journal articles. F*** 'em. 1st, there is nothing "wrong" with him. 2ndly, I've tried to explain it nicely, now I'm going to go all medical terminology and literature review on them.

 

I'm feeling a little ornery too. One of the people attending is the psychologist who, when this whole school thing started, tried to refuse testing saying that it was a clear case of ADHD. After making her aware that I knew the law around her obligations she did the testing and found that there was no evidence of ADHD. DUH! He has a neurological issue. I know that she has completed new testing this past month (required since its been 3-years). I am not worried about his eligibility, he has a very clear need for special accommodations, but I am not particularly fond of this woman. I happen to keep my hair shaved pretty close to my head. I'm thinking of taking it down to skin the day before the meeting just to mess with her. They all know I do not have cancer but I am told it is uncomfortable to sit in a room with a bald woman. I planned on shaving before I go to Peru anyway (its a shaman thing). I suppose doing it early for shock value isn't very shamanic on my part but I am human and ornery just might win on this one.

 

Tomorrow I also want to get back on here and see how everyone else is doing. I think about you all so often. 

[mammaP]

Hi Amy. that is a very positive post and I am really pleased to see that you are doing so well.

You have come a long way since you joined and we are very proud of you for persevering 

through the darkest times.  What an experience you are going to have, can't wait to hear

about it and you haven't even left yet! I will be moving into my new home about the time

you go away, life changing stuff for both of us.

[Altostrata]

Wow, Amy, what an adventure you have ahead of you. I am happy you're feeling up to it.

 

I have trouble finding good socks, too. I like cotton. Try Hanes online.

[mattinsmom]

today sucked

 

it just sucked. 

 

tomorrow will be better, right?

[Petunia]

I'm sorry you had a bad day

tomorrow will be better, if not tomorrow, then the day after

[Rhiannon]

yep, there will be better days, for sure. Sorry this one sucked.

[mattinsmom]

Hello all

 

Sorry to have disappeared. SO much has happened. Mostly good. Some painful but that will just be a lesson down the road.

 

I am leaving for Peru in a few hours and should be asleep (plenty of time for that on the plane). I just wanted to say how amazing you have all been. I think about you every day, even when I don't make it to the posts. 

 

I'll be back in May!

[bubble]

that sounds great, Amy!

 

I've heard Peru is beautiful and I hope it will contribute to your further healing. Have a great time, thank you for checking in and  I look forward to reading from you again in May

[mattinsmom]

Hello all

 

I am newly home from Peru, the trip was life changing. I'm still getting my footing and hoping to be back and checking in with you this weekend!

 

Missed you guys

[mattinsmom]

Sorry for the triple post. Guess phone was slow and I should have waited before hitting the add reply button those extra times. :/

[bubble]

welcome back Amy triple times

[Petunia]

I was thinking about you this morning and thinking that you would probably be home from you trip soon, and here you are

Welcome home.

[mattinsmom]

Hi

 

Still catching my breath and processing my trip. My goal is to catch up on your lives this weekend. Just know that I haven't forgotten you. 

[bubble]

[Rhiannon]

Welcome back Amy!

[mammaP]

Great to have you back Amy, sounds like you had an amazing time 

[Wolfhound]

Hi and welcome. Hope things are settling at home and you are still full of new experience. I admire you! I wouldn´t be able to survivie such sojourn. Take care ! WH.

[mattinsmom]

Oh my F**********

 

I have spent the last 2-hours trying to write up everything that is going on when apparently I hit the wrong button and everything disappeared. AHHHHHH!!!

 

Still want to get it down, partially so people know why I haven't been around and partially for me so I remember. Now it's going to be short tho. 

 

Puru - amazing

Worked w/ shamans (many) all focused on my head, and then the last 2 got adamant about stopping my meds. "You, no more medicine, no depression medicine, you stop now, ok, no medicine depress". Long story there but it was a big deal. On April 21st I made a cut w/ Wellbutrin. 225 - 187. No side effects, w/d, nothing. Shamans still focused on my head and telling me to stop taking meds. I opted not to drop again while in Peru.

 

Came home on April 29th.

 

May 8th saw optometrist for follow-up. Vision keeps changing, peripheral keeps changing. It all changed again. This time my visual field changes have jumped eyes and quadrants. That's abnormal. Dr. is concerned because it means there is a neurological component happening. She schedules appointment with neurologist and ophthalmologist - specialist

 

May 9 meet neurologist. She thinks MS and orders MRI. She says we will talk about my meds after the MRI because some of my symptoms (confusion, brain fog, poor concentration, etc) are from Wellbutrin, she wants me to make a plan to talk about it, but she wants to see my brain 1st. 

 

May 13th, MRI

 

May 17th, (almost a month since last cut) I drop Wellbutrin from 187 to 168. One day of fatigue and one snarky dinner-making time but no other wd symptoms.

 

May 20th, review MRI. Not MS but there is a small, active lesion in my brain. It was not expected. Neurologist doesn't know what or why. She goes off about Wellbutrin. Says that it always causes neuro damage, that it should be illegal to sell, that dr's are careless, etc. She is concerned about how quickly my vision is tanking and some of the other increased symptoms (falling, banging into things etc) and cannot rule out Wellbutrin as a cause/contributor to the lesion. Long story...stop taking Wellbutrin asap. I immediately think of the twin shamans

 

Pertinent comments she made:

 

10% decreases is ideal in general (not for me this time), she wishes people would do that because it would stop a lot of rebound and people going back on meds. 

Rebound will always happen to some degree. It does not mean you have a disease.

Symptoms can be the same as or worse than what got you to take the meds in the first place. It is not proof of disease.

Symptoms will pass if you give them time

Remind yourself that what you are feeling/thinking etc is just the medicine and it will pass. 

If you do actually need meds, and absolutely no other intervention will help, you won't know for at least 6-weeks of being med free. 

 

And for me - No matter what, stop taking Wellbutrin. It is medically necessary for me to stop as fast as I safely can because there is reason to believe that it is causing more damage, that the damage may be becoming permanent, and it could be causing/contributing to lesion (possible future lesions). Also, she cannot look at other possible neurological causes for the lesion and symptoms because Wellbutrin mimics too many disorders. She is worried that there is something going on and that she can't tease it out w/ Wellbutrin involved. Her dc schedule is much more aggressive than 10%. She'd like me off within 6-weeks. She did say that if rebound symptoms are absolutely unbearable then I can pause/slow down.

 

Ummmmm.....ok?

 

May 23rd I see eye specialist. I have cataracts but nothing can be done about them until I fix my dry eyes. Its  not that my eyes are dry, use drops, its that my eyes are not making tears/lubrication and are leaving irritated areas, that come and go, that are probably the cause of the constant changes in my vision. Use two different medicated drops for a month so that all the irritated spots can heal and come back to see what is going on with the cataracts. Oh, and have I considered taking something other than Wellbutrin? Wellbutrin causes your eyes to dry out. 

 

Seriously.

 

May 24th, 1-week from previous drop, decrease Wellbutrin from 168 to 150. I had a headache next day, a little unsteady.

May 25th, hint of blood tinged pee. 

May 26th, trip to dr. Have a UTI that has progressed to my kidneys. Antibiotic.

Today - I'm exhausted. Still hurts to pee but no longer need to hold onto the walls and cry every time. Stopped peeing blood.

 

Antibiotic: ic sulfamethoxazole - tmp ds @ 1 tab per 12 hours for 7 days

Wellbutrin is the only psych med that I've made changes to. Current dose 150mg.

(Lamictal @ 325mg; Lorazapam @2mg; Omeprazole@ 40mg)

 

That is what is going on in my neck of the woods.  Whew! Pizza is here. Time for dinner

[Jemima]

Wow, what a shocker!  I thought Wellbutrin was one of the less harmful antidepressants, but it looks like I was wrong.  Of course you're justified in getting off of it ASAP under these circumstances. You neurologist sounds like one of the few doctors on the planet who has a good grasp of the antidepressant situation.

 

Good to hear from you, Amy, and the very best to you as you struggle with all these medical problems.

[mammaP]

It's great to 'see' you Amy but I'm sorry that you are having these problems,  that must have been a shock

for you! I agree with Jemima that your doctor has a good insight and knowledge of these drugs.

I'm glad she was the one you got to see and not one who is pro drugs. 

 

I hope the taper goes well for you and you don't suffer any more with withdrawal than you are suffering

already.   

[Rhiannon]

Wow, Amy! I'm sorry you've got so much going on. And really impressed with your neurologist. Overall, neurologists seem to be smarter about these drugs than psychiatrists. Maybe we should add her to our doctor list?

 

This is one of those situations where you may have to taper faster than we would suggest and risk more withdrawal symptoms. But you're down to 150 mg, yay! WTG!

 

Do remember those charts:http://survivingantidepressants.org/index.php?/topic/6036-why-taper-paper-demonstrates-importance-of-gradual-change-in-plasma-concentration/

 

so you have to go more slowly at lower doses. But the good news is, those are lower doses, so causing less damage and fewer side effects.

 

Hang in there and please keep us posted.

[Rhiannon]

Also, by the way, I took Wellbutrin for many years.  Yuck. Hope my brain's not too damaged, but oh well, can't change it now.

[mattinsmom]

While I am thrilled with my neurologist's honesty and willingness to call a med for what it is - a neurotoxin - she did sing the praises of Lamictal which gives me pause. She also said she knows nothing about withdrawal for psychiatric circumstances and would defer to a psychiatrist with the suggestion that the older drugs are safer (limited bipolar and lithium conversation) as a "last ditch drug". I asked her about bipolar and schizophrenia showing on mri tests since I'd found an article suggesting that they might and she rolled her eyes. She confirmed that no mental illness has been found on an mri and that what little schizophrenia connection is only that there seem to be common areas of damage but that common and causal are far from the same. And I digress...

 

Checking in and reminding myself that I want a new pic for my thumbnail and keep forgetting to try harder to find one.

 

My drop is going much better than I ever expected and it is not without its troubles. I certainly do not want to give anyone the impression that this is an ideal situation. With every drop I have experienced a deeper tiredness, headache, and body aches. They are progressing with the cuts. There is a correlation. My cuts are faster than I would ever suggest and only because of my neurologist pushing due to medical concerns. So truly, for anyone reading this, I DO NOT recommend decreasing medications at the rate I am decreasing.  

 

My Wellbutrin is at 112.5mg. I made a 37.5 mg cut (1/4 tablet) on Monday (June 2) which was only 9-days after my previous cut. I messed up and took the previous dose of 150mg on Tuesday, back to 112.5 yesterday and today. Its a significant drop and I'm feeling it more than the last couple. I think I will hold at this dose for longer. What I really want to do is stop taking it completely, the lesion is a scary thing, but I see that my urgency is my fear talking. I was told to slow down when the withdrawal symptoms become unbearable and/or disruptive to my life and while not technically unbearable, this last cut is disruptive. The most bothersome symptom is exhaustion. I still have a headache and body aches. I am dragging myself around and things aren't getting done. I also had a kidney infection last week and am healing from both the infection and the antibiotic. I don't think being easily distracted and forgetful has ever left  

 

Excellent news, I'm sleeping thru the night and I've put on 6 pounds. 

 

I still see my chiropractor regularly, We have an open-door agreement. I can go whenever, no appointment necessary, but at least 1x per week. He and chiropractics have been so influential in supporting my healing. My therapist is a God-send. My trip to Peru and work with so many Shamans brought great healing. I'm eating healthier (with the exception of soda). The summer weather helps, love the sunshine. I don't think I could do this without all of that in place. 

 

I think I am trying to write my experience while at the same time discourage other people from following in my footsteps with this particular drop pattern. I have extenuating circumstances and exceptional medical and community support.

 

Bottom line. I'm ok and don't drop the way I am.  

[Barbarannamated]

MM,

 

Your neurologist sounds very promising. I, too, have brain lesions as shown on 2 MRIs, but causation has been speculative. I never knew that an MRI could generate so many very different interpretations -- from "normal brain shrinkage/aging" to some very serious degenerative diseases. Scary stuff, indeed. No doctor has mentioned drug toxicity/ damage with me although I think many doctors would be reluctant to make that connection, even as speculation. How did your doctor determine that the lesion is related to Wellbutrin?

 

Also interesting that she feels Lamictal can be beneficial. I know a few people are using very low dose Lamictal during withdrawal.

 

I'm glad things are working out for you.