☼ Mattinsmom: update

[Rhiannon]

Amy, I'm glad to hear it's going okay. I support your idea of holding longer this time--cuts can have a "lag time" effect so you might want to give it time for things to play out. And keep in mind, you are at a much lower dose now, so the toxic side effects are also much lessened.

 

It's always tough to find that balance, when there's a toxic effect, between tapering so fast you're intolerably sick, and staying on meds that make you sick. In your case I'm going to encourage you to go a little bit slower than you want to, because of your complex history and your history of withdrawal symptoms in the past. If you take an extra couple of weeks now, at your current dose, in the long run I don't think it's going to harm you more than whatever's already happened, and it could make a big difference to how tolerable your taper is.  And the taper needs to be tolerable enough that you don't end up in the hospital and/or on a bunch more meds, so it matters to your brain's health.

 

Then again, my brain ain't working so great right now...

 

Hugs. I guess that's always safe.

[mattinsmom]

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.

My neurologist couldn't say that this specific lesion was caused by Wellbutrin. What she said was that no matter how the lesion came to be, Wellbutrin always causes brain changes and that the changes are progressive and can be permanent. Even if the Wellbutrin didn't directly cause the lesion it certainly isn't helping. The symptoms of my vision, gait, falling, word recall, muscle tone, etc are the symptoms that have the potential of being permanent. They are also the symptoms of so many other things that it is hard to tell. The biggest issue for me (re Wellbutrin) is that as long as it is in my brain we can't test/treat any other potential neurological disorders.

 

Have your doctors suggest MS to you? Multiple lesions must be scary.  

[Barbarannamated]

Amy,

 

Thanks for the clarification.

 

My first endocrinologist who ordered the MRI (code used "vasculitis/cerebritis") said that the lesions were similar to MS, but in a different pattern (both autoimmune). Treatment is high dose steroids (or chemo agents) which I didn't tolerate. Symptoms began with withdrawal, so I'm hoping things eventually settle.

 

The 2nd MRI (ordered by neurologist) didn't show worsening. Neurologist said "normal aging".

 

Yes, very scary.

[mammaP]

This is very scary stuff and I can't  think of anything to say that hasn't been said so

just going to send extra squishy hugs for both you and Barbs. xx

[mattinsmom]

Quick check in.

 

If I have stopped by your page and done a flyby hug, please know that I am trying to let you know that I care. I have skimmed, and probably not fully comprehended, what is going on for you but am too exhausted to respond. If I haven't gotten to you yet, it is only that I peter out pretty quickly these last few days. I still care about each and every one of you. 

 

Med drop is ok. I'm a bit teary. This weekend and yesterday were a little hard with the emotional stuff. All warranted but the depth more neuro I think. I stopped sleeping on Thursday, pulling only a couple of fitful hours. Noticed a change in lorazapam manufacturer. Wondering. Headache is mostly gone, have allergies so sometimes my sinuses get the better of me. Not shaky, eating ok, overall I'm alright. I'm going to sit with this dose for awhile. 

 

Rhi - if I haven't already said thank you - thank you for pointing out the degree of drop differences between therapeutic levels and 0. The chart was really helpful. Also, thank you for pointing out that less meds in my body automatically connects to it is causing less harm. I feel better about slowing down. When it comes to risk/benefit I probably have more to risk by dropping too fast now than I do from staying on the lower dose for a few extra weeks or so. Yes, I am at a point where I am comfortable with the idea of holding. Thank you for stepping in and pointing out the panic run I was making. 

 

Think I might need an iron boost, bruising way too easily, changing my eating to add more iron rich foods. 

 

And now I think I might actually be able to sleep. Fingers crossed. 

 

Blessing and gratitude to you all for sharing your stories, keeping me posted, checking in to see if I am ok, all that mushy stuff. 

[bubble]

Thanks a lot to you Amy for dropping on us! It's really so nice of you. Thinking about you too and hope you can get some sleep.

 

big hug,

bubble

[Petunia]

Thank you for updating and for stopping by my thread even though you are not feeling well.  Just do what you can, its difficult to try and keep up with everything we want to do.

 

Thinking of you and hoping for continued improvement.

 

(hugs)

Petu.

[Rhiannon]

I always love your flybys Amy, thank you. Glad to hear something I said was of use to you. :-)

 

Hang in there--thinking of you.

 

Hugs!

[mattinsmom]

I've been scattered lately. Really excellent moments, and really distracted ones. Nothing "bad". Things are just...different. 

 

My sleep has improved. With the temps outside going up my hot-flashes have increased in number. They really aren't all that terrible either. Very short-lived but for some reason they really piss me off. I get furious for the 2-5 minutes that they last. Seriously, it is ridiculous and I know it. It still happens every single time.

 

The weather (summer) has been a mixed blessing. Sunshine and being outdoors has always helped me to feel better. It is a dramatic difference. I'm noticing that I am having trouble with the heat tho and that isn't like me. One of my favorite places (vacation spots) was Calico, CA and it was 116* the day I was there. I was out weeding today and had to keep coming in. Its only in the upper 70* and its overcast.

 

I've intentionally kept myself very busy. I've a lot of yard work to do, and I've been making myself do it. I've also been really pushing myself to go out more. I've been out with friends a couple of times and even went to the movies and an art performance. I had breakfast with a friend today and am having breakfast with another new acquaintance tomorrow.

 

I see all this increased activity, involvement, even a little joy here and there. I know things are improving and yet, today, I'm not really too happy. Today my lesions, the idea of it, has the better of me.

 

The last couple of days I've been easily distracted, easily tired, uncoordinated and I keep hitting my head (accidentally). My vision tanked again. I'm waddling when I walk and I have a constant pressure/light pain in my head. So, withdrawal or lesion? I know that there isn't an easy answer but there is a part of me that truly believes I have something significant (maybe MS) happening neurologically and that it is just slowly progressing while I wait for the Wellbutrin to leave my body. I've had these symptoms before - when I wasn't doing any kind of med change - and had a friend suggest MS at the time. Then it mostly went away. Then it came back and I blamed meds. Now I wonder.

 

I am not saying that meds are innocent here. I most certainly think that the meds, and my recent decreases, are huge players in this situation. I'm not willing to do another drop yet, I need things to have time to heal a little more. I know that just the fact that I am in a process of w/d means that there are neurological changes happening. I know all this, I believe all this, and I have a lesion that it creeping me out.

 

I'm frustrated with the whole thing. I understand that there isn't a clear answer and never will be. Just venting I think.  

[WinningThrough]

Hi Amy. Just stopped by to say hello.

 

I've just read your thread and I read your story. Just ... Wow.

 

Your trip to Peru sounded amazing.

 

Wishing you continued healing.

[mattinsmom]

Excellent day! Love the sunshine! I spent the day outside working on an Earth shrine. It felt good to get my hands in the dirt.  

 

My sleep quality continues to improve. I've been sleeping about 6 hours a night and sometimes I am able to go back to sleep in the morning and grab another hour or so. I kinda feel bad for mentioning it because I know how many people here struggle with lack of sleep. 

 

I saw my eye specialist yesterday. I do need to have surgery tho. I have cataracts in both eyes that need to come out. The abrasions are changing the shape of my eyes (increasing astigmatism) and he has put me on 3 different kinds of drops that I use multiple times a day. He said that the abrasions are healing faster than he expected and said that cutting the Wellbutrin is a definite factor. Any way that I can limit/eliminate the antihistamine is important. My eyes are starting to clean themselves (I did not realize that eyes do that) and that is a good sign too.

 

All in all, things are good. 

[mattinsmom]

Thanks WT

[mattinsmom]

Just checking in. Things are still going well. I have been able to spend so much time outside. I can't even begin to explain how much good Momma Nature, ritual, and sunshine are for me.

 

I'm struggling with a decision/plan. Bearing in mind that my neurologist had told me to stop taking Wellbutrin as quickly as I can, my eye doctor would like me off it before my operations. Since my eyes are changing shapes my vision is continuing to worsen. I'm using 2 different eye drops, each 2x daily and another kind 4x a day to heal the abrasions and side effects of the Wellbutrin while I am still taking Wellbutrin. I'm taking two-steps forward, one step back. I know it is still 1-step forward.

 

I don't even know how to explain what is spinning in my head...lets try this again

 

Neurologist says I have to stop taking Wellbutrin as quickly as I can tolerate.

Eye dr says Wellbutrin is causing vision loss and changes in the shape of my eye - stop taking as quickly as I can tolerate.

Less changes/abrasions in my eyes will result in easier and more successful surgeries. 

If my eyes change shape too much between now and then I will have to have additional work done to reshape them and I'll have less vision restoration.

So that makes me want to suck it up and stop fast.

 

But,I get headaches and sleep problems when I make Wellbutrin cuts

But, my chiropractor can/will do a lot to correct those

But, I have mood swings in direct proportion to the cut

But, it is summer (best time for me) and I can see/talk with my therapist as much/often as I need. (She really rocks)

But, technically people take medications, including Wellbutrin, and have eye surgeries

But, I have to come off it anyway

But, I don't want to be miserable - especially during the summer

But, I am ready to be done with all this Wellbutrin BS

But, but, but, but, but....................................

 

At the moment I am toying with a 10% drop now, then 25mg cut every 2-weeks. I think that puts me at a 25%, 34%, 50%, 100%.

And I look at that and think I have lost my mind for even considering it.

And I still have to get off the meds as quickly as I can tolerate.  

 

Maybe I am just venting. 

[Rhiannon]

Well, vent away. You're in a difficult situation--it happens sometimes, people need to get off the med fast for significant health reasons, but they have to balance that with needing to go slow because of significant bad health reactions when they cut.

 

I notice that you're down from 300 mg in November (how many years on that?) to 112 mg, more than half.  And you sound much better, stronger, more stable, than when you first arrived here, and it sounds like you're not losing weight any more.

 

So I'm sort of thinking a couple of things--first, you've already reduced some of the risk associated with the drug by getting the dose down so far, and pretty soon you'll be down to an even smaller dose, so that's something to keep in mind--there actually is some gray area between "all" and "nothing." Toxic drug effects decrease as the dosage decreases. (Whether fast enough or not, that's another question.)

 

Second, your weight has been stable or at least not dropping for a little while, it sounds like, which means you may be able now to actually build some strength and repair some tissues, which may be something your body hasn't been able to afford to do for a while. I think a good solid nutritional status is a good thing to have going into surgery of any kind.

 

So in your algebra of risks and benefits, maybe toss those two things in also.

 

My opinion, which you didn't exactly ask for, but oh well: I'd start with the 10% cut and see what happens. You're almost down to 100 mg, which is a third of your original dose--very good. Don't try to plan out what happens after that, just try the 10% and wait three weeks and see what happens, and base your next decision on that. That's my suggestion.

 

I don't want to see you going back to that bad place you were in when we first met here, but I do understand that you may need to risk feeling pretty crappy, more than you would ordinarily. I just don't want to see you take a nosedive right off the cliff, you know? Try the 10%, see what happens. I'm crossing my fingers for you.

[mattinsmom]

Rhi, I always welcome your opinions!

 

Today I took 100mg. We will see what happens. 

 

I know that lower doses by nature cause less risk but any effects on my eyes is something that will have a direct impact of the surgery itself. Its messy. Meds are always messy. Going on them sucks, coming off of them sucks. But I am grateful that I have support no matter how it goes. 

[mattinsmom]

Check in

 

Decided to drop to 100mg. I'm very deliberate in my health routine, eating, going outside, exercising, seeing my chiro. I have to do this. It will work!!! (pep talk right there).

 

I cannot believe just how destructive the Wellbutrin has actually (is) been. All the times my Dr. told me it was the safest, Humph. Oh well. Now I know and now I am making the changes necessary to fix my brain and eyes. Yes, fix. I am determined to reverse the damages done. Positive thinking, positive attitude, and fingers crossed

 

I had trouble w sleep last night. I was so tired but crossing that line between exhaustion and sleep was far from pleasant. I was so hot. I'm having trouble with body temp management, thinking it is hormonal and summertime combo. I grabbed an ice pack and I fell to sleep around 3. I woke up at 4 with a splitting headache and, grabbed another ice pack. I considered staying up but crawled back into bed just in case. I did fall back to sleep. I tossed around a little, then slept until 10. I'll gratefully take it. And, my headache is gone. 

 

My weight is up to 104lbs. Now I have to be careful that what is going on is muscle and not blubber. I've been lax in the healthy eating department. I've fed into way too many cravings.

 

All in all, Things well. I know I won't feel the cut for awhile but every positive day is a step in the right direction. 

[Wolfhound]

Even if I don´t post much, I am reading your thread and I am sending hugs across the ocean.

[mattinsmom]

Feeling the hugs from across the ocean

[mattinsmom]

Checking in.

 

Feeling a little teary these last two days but we've had rain and I'm missing my son. He's having the summer of his life (newly licensed driver) but he's never home anymore. 

 

All in all tho I am feeling good. I'm in a good space. Physically ok. Sleeping and eating are good. Meditation is making my mornings go more smoothly. I am very GRATEFUL!

[mammaP]

Glad you are doing so well MM.  I know what you mean about missing your son, when my kids 

became independent it was quite a wrench and is a kind of grieving process. They can survive without us

and go out and about under their own steam. A kind of loneliness hits for a while until you adapt to the

changes.   Then you can start living your life, enjoy the ride! 

[mattinsmom]

Thanks mommaP. It is an adjustment. I talked with him and explained that his growing up and becoming a man is an adjustment for me too. That being the parent doesn't automatically make is easy or predictable and that no matter how "grown-up" he may think he is/be, he is always my baby. He seemed to understand. 

 

The sun is out tonight after several days of rain. I can breathe again. It will be a beautiful, blessed day for me today. Rain is so hard for me. 

 

Good luck sorting thru your things. 

[lexicon]

Hi Amy,

Stopping by to wish you continuous progress of well being and healing

I have rejoiced with your triumphs, and felt deep sorrow with your distress ..

Wishing you well ... Holding you in thought and prayer ❤️

Lexi

[mattinsmom]

Thanks Lexicon.

[mattinsmom]

My growing up son that I miss so much is driving me crazy. You know, he's not my first. He's my youngest but nothing at all like his brother. Exhausting. I think God makes your 1st one easier so that you'll have another

 

I'm doing ok. The weather is getting to me. Not a fan of rain/gloom and it is raining and gloomy.

 

Oh, my psychiatrist is retiring!  Yup. I'll see him one more time in October and then on to someone new. That should be fascinating.  

[bubble]

Hi Amy,

 

just wanted to stop by and let you know I enjoy your comments on other members' threads. It's like I don't need to post an update-just read from others and everything is applicable.

 

Wouldn't know about kids but your explanation sounds very logical. Just have a quite younger brother and can say that teenage upheavals do pass.

 

I should check up on my psychiatrist. Last time I called there was just a massage she was on a sick leave but also very near to her retirement so I'm actually worried about her. I would go just to see how she is doing, we never spoke about her retirement but I don't like the effects it would have on my budget since she has a private practice. Don't like the idea of a new psychiatrist at all

[mattinsmom]

Ut oh

It's 1:30 and I am wide awake. Not uncomfortable, just not sleepy. Not even a little bit.

 

I'm gonna give it another try. Fingers crossed.

[tezza]

Hi mm,

 

I'm glad you're feeling better than you were in June! I'm very glad you are sleeping better, even though last night wasn't so good; hopefully, it won't continue.

 

Rainy, gloomy days make me feel gloomy, too. I've known some people that enjoy that kind of weather, if we were all the same it would be a boring world.

 

I just heard Joyce Meyer say "I don't care how old your youngest is, they'll always be your baby". That is true!

 

I really like the fairly new thumbnail!

 

{{{hugs}}}

T

[mammaP]

Teenagers! Can't live with 'em, don't want them to go! They are a pain in the rear

Sometimes but morphing into mature adults. Mine drove me to distraction but all grew

Up into fine men and women I am proud of. I'm sure your young men vwill make you

very proud too :-)

[Petunia]

Teenagers! Can't live with 'em, don't want them to go!

 

Yup!  My daughter is back from Japan in a few weeks, I'm feeling relief and dread in equal measures.  I've missed her like crazy, but life has been less stressful.

 

I hope you managed to get to sleep last night (or the one before, these time differences make things a bit confusing)

[mattinsmom]

Hi

 

I did manage to catch some things and everything settled into its proper place. Thank you all for the support regarding teenagers. 

 

I'm doing well. I am so grateful that my sleep is pretty regular but it makes it hard to catch up with people here. I want to read and comment and support people but summer has brought a lot of work along with it. Think about you guys every day even if I don't make it to your pages. 

 

I'm holding a little longer than I had hoped for. I know, it is still too fast but the less Wellbutrin, the more successful the surgeries. Still. waiting a little longer. I've been having really bad headaches (it gradually moves from one smallish specific spot to another?). I am pretty sure it is mostly my sinuses. I also know that every time I cut Wellbutrin I get headaches. There is no sense in me making things any worse. Good/sucky thing is that whenever I see my chiropractor he gets rid of the headache. Good because the pain goes away, sucky because it is a temporary reprieve and I can't afford to see him every day. I'm going to see him this afternoon.

 

I'm doing a short fast. Hmmm - probably not helping the headache!  My body had been getting sicker since I've been back from Peru. I started having warm fuzzies that grew into after meal hot flashes that grew into uncontrollable, many times a day, hot flashes. Finally it progressed to tummy troubles too. My body was screaming - "Hey, how much more do we have to do to get your attention?"  I just didn't want to give up the easy processed foods. So, 2-days just water then slowly adding whole/raw/healthy foods back in. Little reset. 

 

Computer battery is dying. Time to go. 

[mattinsmom]

I didn't catch things...I caught sleep.

[mammaP]

Sleep is good, catch some for me next time you are out there 'fishing' 

[lobster]

Good morning :-) I'm glad you are sleeping through the night. And your trip to Peru was a good one. It sounds like you have a handle on your tapering and what is working for you. I wish you all the best.

[Rhiannon]

hugs...

[bubble]

nice reading you and yeah for sleep.

 

Headaches are really awful and so are gut issues but your resetting sounds like a great idea

 

hugs

[mattinsmom]

I'm still doing good. Today is a happy day. We've had mostly sunny days with wicked storms at night. I'll take that. I spent my day working outside on something I enjoy doing and the temperature was pretty awesome in the upper 80s. I like it hot so maybe not everyone was as happy about it as I was. It is about 10* cooler now with a nice breeze. I need to find a place with daily weather like this and move there!

 

I did see my chiro and he did take away my headache. I'm still feeling ok too. I've been outside every day and between working in my yard and walking I'm getting plenty of exercise. Slowly adding yoga back into my routine. Weeding (I like to call it vegetation meditation) let me know exactly how stiff my muscles have become. I taught yoga for years and am more than capable, I just dislike it. There isn't really a good reason either. I think that I worked with so many people who came for yoga, went home and ate canisters of Pringles and bags of chocolate, and then returned to inform me that what I was teaching them wasn't working that I developed a negative connection. 

 

I did fast and that seems to have brought my stomach back to functioning. However, the hot flashes are a nightmare! I read something on FB about people being prescribed AD for menopausal hot flashes and I started thinking...I had my hysterectomy 2-years ago with no major hot flashes until recently...until I started dropping my AD. I am most certainly NOT saying that prescribing an AD for a gynecological/hormonal problem is appropriate (jmo) but I am wondering if there is some connection. I hope not. These hot flashes suck. I know that salt and sugar get me every time but this is more than dietary. They pass.

 

My oldest turned in his resignation at work and I am so proud of him. He is a really good employee and the company has been taking advantage of him. He's only 21 and a college senior. He lives at home, has already paid for this years car insurance, this years tuition, and has money set aside for incidentals. There is absolutely no reason for him to work at a place that mistreats him. I wish I had learned that when I was his age. He wants to teach guitar lessons for extra cash while he's finishing up school. 

 

My youngest, well, he is adding to my greys. He's such a good kid just a handful sometimes. I wouldn't trade in either one of them for anything. His 17th birthday was yesterday so he has been out with his friends. Today they went tubing. He is coming home to sleep in his own bed tonight so I'll get to see him for a couple of minutes. I'll take it. I am glad he is having fun. 

 

Saturday night is my favorite night for the most ridiculous reason - Ghost Adventures and Dead Files are on tv. Yes. I live for ghost shows. It is the season finale of one and the season premiere of the other. I'm so excited I might even make popcorn. Not mature, but exciting  

 

I wish that I could take the happy that I feel right now and sprinkle it on everyone here like fairy dust.