72 replies to this topic

[fishinghat]

Hi Sharon

"Since my last post: Being off Metoprolol now for this period of time, my B/P has stabilized except during a PAT attack, especially if severe & prolonged. When my bpm are 120-130+, my B/P drops very, very low. This is happening 1-2X’s a day. Once under control, B/P goes back to normal. PAT attacks vary from quick, mild attacks that are more a nuisance than anything, to periods that are severe, painful & prolonged. I’ve been trying all my natural control techniques, nothing’s helping."

I have had PAT for over 55 years now. I use to take Atenolol (beta blocker) to treat it which helped but around 40 years ago I found a dr that taught me a simple breathing technique to control it. When a event occurs lay down right where you are at, take a deep breath and let it out slowly, and repeat as necessary. My worst episode was at 190 bpm for 45 minutes before I learned that technique. Now it is unusual to exceed 2 minutes in length. When I went through my various withdrawals over the years my PAT would flair up as well. Often times at the rate of 2 or 3 episodes a day. Normally it runs about 2 or 3 a month.

The low sodium levels due to Cymbalta is well documented in the medical journals and does continue into the withdrawal period even after being off of it completely. It often takes a month or two to see improvements in it after your last dose. There is details on that in the ebook.

These symptoms, including the liver issues, are not uncommon with Cymbalta. I understand your drs being concerned but these items should pass as you come off the Cymbalta for a month or so. Going cold turkey will probably increase the intensity of these issues but worrying about them causes more stress and increases them as well. Flip a coin.


May I ask what your last Alt and Ast were and how long ago that was. (Liver function test)? Also what was your last serum sodium level and how long ago was that?


There is no clear cut answer here. Going cold turkey may shorten the time of the off spec labs but may also make the labs worse in the short run. If sodium levels get to low it is common to develop seizures until they resolve. Once I know your blood results I would have a clearer picture of just how bad these things are and how vulnerable it would be for you to increase your withdrawal rate.


At what rate are you currently dropping?

[Overwhelmed]

Hi Hat. Thank you so much for your response. And thank you so, so much for the breathing technique tip. Earlier, just as I finished reading your post, a nasty episode hit. I immediately got down & followed your instructions. Because of the dizziness & pains being so intense, I didn’t stop at my cuff so I don’t know the bpm & they were beyond being able to count manually. It helped, it had to of, for being as bad as this one was, instead of the (at least) 50 to 60 minutes or much longer, it only lasted 35 minutes before easing. This will definitely be my “go to” technique when the bad ones hit. 

 

All I know about my liver function tests is I don’t know much at all. Just that I was told, after 3/2^nd labs, that they’d been slowly going up, then were elevated in January & more so the first of March. She was more concerned about my sodium levels, they’d been below normal for 18 months & hadn’t been addressed by previous doctor. I know I wrote down both my liver (Alt & Ast) & sodium results when I checked on MyChart last month but I can’t find that paper. I see I gave you the sodium but not the liver results, I know I had intended to. Now, with everything going on with the Coronavirus, I’m unable to get the information. Friday was the last day the clinic I go to was open, even for calls, all patients are now being routed to the main clinic in the city & appoints are for emergency only. I no longer have access to MyChart on-line, there was a security breach & we’re all locked out while it’s being investigated. So, my last labs were 3/2^nd, all I know is my sodium level, it was 22. When I talked to that (new to me) dr on the phone Friday (4/10^th), he was just “thinking” my sodium level was probably better. He based that on some of my symptoms (by far, not all) being somewhat better, after increasing salt/decreasing fluids & believing I was no longer on Cymbalta.

 

This past month, I’m sort of following a schedule with tapering. On March 16^th, I was at 24 beads, now I’m at 18 beads. So, I’ve dropped 6 beads in 26 days…averaging 1 bead drop, approx every 4-6 days. If I stay at, say every 5 days, that’s another 3 months. So when I finally do have my labs checked again, that’s 3 months of being on Cymbalta, that the dr(s) will think I haven’t been, so that won’t be taken into account when they review my results. Much like the dr last Friday, thinking the PAT would of been at least minimally improved, if Cymbalta was the cause, because he thought I’d been off for a month. I didn’t tell him different because he laughed when he seen tapering by bead counting in my chart. I ignored this because, like it or not, at the time he simply was my only option to speak to a dr. I have no idea how long it’ll be before I’ll have medical guidance (such as it is) with any of this again or labs.

 

I do realize, Hat, there’s not a magic or “one size fits all answer” but I do have such a deep respect for you & Iun’s opinions & the guidance y’all have given me. So, here’s me question…based on the situation I’m in & taking into account that compared to so many, I’ve been very fortunate as far as the severity of side-effects (yes, I know, that could change)…could I taper, still 1 bead, but every 2-3 days (holding longer if need be)? I have read about some people tapering by simply removing 1 bead a day, throughout their entire taper. I’ve always wondered how they do it, without problems. 

 

Well, I’ve done it again, another looong message. It seems I have no idea how to communicate without writing a book.  Thank you again for your patience, for always understanding & for always being a beacon of light. God Bless.

[fishinghat]

You will get better with time using the breathing technique.

 

I would continue at the one bead every 5 or 6 days as you have been handling that well. 3 Months isn't that long.

 

As far as the liver goes, if there is no sign of jaundice, nausea, vomitting or swelling of the legs I would think it is not too serious at this point but of course can not guarantee that. The low sodium can cause irritation but would also cause nausea, vomitting, headaches, cramps and even seizures. Keep a close out look for these symptoms until you can get off the Cymbalta and get new blood labs done. Have you noticed any of the above symptoms?

 

You hang in there and be patient. Please keep us informed of how you are doing and try not to worry too much. You are not alone.

[Overwhelmed]

Regarding those particular symptoms, no I haven’t. What they contributed to low sodium &/or hypotension and the bradycardia, was extreme fatigue, not being able to stay awake, confusion, dizziness etc. Now that I’m off the Metoprolol & B/P is closer to normal (except, of course, during PAT episode) & I’ve increased my salt intake etc, these symptoms are so much better. I don’t think my Ast & Alt were really that much over the “too high” threshold or she would of been equally concerned as with the sodium. I definitely will keep a watch on things though.

 

I so appreciate your breathing tip. I needed & used it again, during the night & this morning, it makes episodes so much more bearable. And again, shortened the length when compared to before. 

 

You’re so right, 3 months is really not long. Especially when considering the consequences of rushing something like tapering. I really don’t think seeing a dr or having labs done is going to happen anytime soon, so that should be the least of my concerns during this. I’m going to concentrate on what I need to do, to do this as safely as possible. So, I’ll continue tapering 1 bead every 5-6 days, holding longer if need be. 

 

Thank you, Hat, for your guidance & encouragement. And for always patiently listening. Ya’ll have been such a blessing, I definitely could not of done this well, with my CW, without y’all. 

 

Take Care and God Bless...Sharon

[invalidusername]

Hi Sharon,

 

Was obviously going to leave this one over to Hat as this is more his area of expertise, but from my perspective, never underestimate the withdrawal effects of a drug when the EFFECTS of the drug aren't even understood themselves.

 

It is also nice to read that the aforementioned primary didn't take offence to you taking advice from an online forum!

 

Wishing you well and God Bless

 

IUN

[Overwhelmed]

Thank you, IUN, such an excellent point about the effects of this nightmare drug. And one well taken.

 

Take Care, God Bless

 

 

 

[Overwhelmed]

Hi Hat and IUN,

 

It’s been almost 5 weeks (4/13th) since I talked with y’all, I’ve got updates (good & bad) & questions.

 

First, although I’ve tried to be really careful, I still made an error when I filled my capsules for 5 days on April 19th. Although I didn’t feel any different than after any other decrease, after 3 days I just suddenly had a gut feeling I counted the wrong amount. I opened the last 2 capsules, I had dropped more beads than I should have. I decided to con’t with the mistake & just keep counting down from there, 1 bead every 5 days. This is what we did when I made an error like this one other time. Because of it though, I’m down lower than I would/should of been. I’m now at 3 beads (vs 11 if I hadn’t made the error). I’m doing very well, extremely well, with the physical symptoms. Mid-afternoon, the day after a drop, like clock-work, for 14-16 hours I experience body tingling, headache, nausea & profuse sweating. Nothing severe, just enough to be bothersome, then no adverse symptoms until the next drop & the cycle repeats. I don’t understand how it can stay contained, so specifically, to just those hours, but it does. As lucky as I’ve been, I know all that could change…regardless of how long it does or doesn’t take, it’s not over until it’s over. But, with that said…

 

…I’m not doing well mentally/emotionally. I’m experiencing a type of depression (don’t know what else to call it) that I’ve never known. It feels bigger than just depression. At first, I assumed it’s the CW & my brain trying to adjust. But the longer it goes on, I’m sensing something more is happening. It started prior to my bead error. Nothing has changed in my life recently, well, except that episode of hypotension, PAT, low sodium etc back in March. PAT is stabilized now, the rare episodes are easily controlled, thanks to HAT. I’m not sure about the labs, haven’t been able to have them rechecked. I still believe that entire ordeal was due to CW. The only other thing different is my temporary (?) dr, whom I’ve never met, decreased my Baclofen (for Trigeminal Neuralgia) from 80mg dly to 20 mg over the course of the past 4 weeks. At one time, I was on 120mg of both Cymbalta & Baclofen. When I became completely dysfunctional, they reduced Baclofen to 80mg. Yesterday I came across a post where someone had made a comment about Baclofen, GABA & a connection with Cymbalta & CW. Lately, I’m not comprehending &/or retaining information (very frustrating), so I didn’t really grasp it. And because of a TN flare, couldn’t stay on here to try & figure it out. All I know is I’m on a rapid, down-hill spiral, on the verge of crashing. I’m showing signs of shutting down. In my mind, this compares to what people talk about experiencing when they stopped Cymbalta cold turkey at very high doses. Could the Baclofen have anything to do with this? Or am I confusing the whole GABA thing, and just grasping for answers?

 

Also, this same dr called & requested a TeleHealth visit with her last week. It’s like a triage deal they have going on because they’re not seeing patients. She asked what my main complaint would be if I was seen, I told her I was experiencing a strange depression. She suggested I start on Zoloft, I declined simply due to thoughts of going through another withdrawal. Out of desperation, I did ask about Prozac, she said I couldn’t take it due to my history of hypotension but said she might reconsider it. My personal feelings, due to so many health problems while on it & having tapered this far, going back up on Cymbalta is really not option I want to consider. Although, at this point, the way things are going, I believe I need something. I can’t believe those words just came out of my mouth…it’s desperation rearing it’s head because my thoughts are scaring me.

 

Thank you both, for reading this. I do sincerely apologize for the length, I just wanted to make sure I covered as much as I could. While I could. Any thoughts will be so appreciated but I feel like it’s a hopeless case of permanent brain damage.

 

With prayer…Sharon

[fishinghat]

Hi Sharon, glad to hear from you. That was too much of a drop in baclofen and too fast. Yes, baclofen works on the GABA receptors (see below)
https://www.ncbi.nlm...pubmed/15610924

As such it can play havoc with the mind. Gaba is a stabilizing neurotransmitter so with less baclofen in your system the brain will need time to adjust. It could take several weeks to 2 or 3 months.

P.S. - Not brain damage. lol

[Mxpro32]

Hi Sharon. I had some crazy depression with thoughts that scared me during cymbalta withdrawal too. I've been off completely for 7 months now and my depression never gets that severe any more. The depressed times typically involve lack of interest and motivation. At the worst times it's a little worse than that. Hang in there. Things get better, but it's painfully slow and non linear. I still get discouraged at times, but it helps to remember just how bad things used to be, and to not lose hope that I'm still improving (because I am, even when it doesn't feel like it). Keep up the good work, and don't let those thoughts convince you they are true.

[invalidusername]

Yes, its not over til it is over - thus meaning, the worst could be where you are at the moment at the very end - and for some this is often the case, for others the sting comes after the final bead. Unfortunately there is no way of knowing which way this will pan out.

 

Hat has got you covered with the Gaba, and yes, this will be a bit of a rough ride and it can honestly feel like your brain has been pulled apart at the seams. I went through something similar when the "geniuses" at the mental health place had me on and off pregabalin 3 weeks into my Cymbalta withdrawal. I know these feelings and there are times when you really think that your brain will not return to its homeostasis again. It is what LDN and I call "mental claustrophobia". It seems to be a fitting name.

 

Absolutely not brain damage, as Hat said. But it WILL make you think some crazy things. My research has me cover various aspect of neuroscience and I should know better, but even I, being educated about the brain, was still questioning sanity and so forth!

 

If you can, avoid the pull of any more drugs until you are a little more balanced. With the Baco drop and the bead count issue, it will be a bit of a 'mare. But each day is one closer to coming out the other end... and that IS there.... trust me my dear.

[Overwhelmed]

Thank you, Hat.

 

So I’m going through 2 withdrawal’s at the same time. That’s just great, but it’s my own fault. I read the info you sent me and I also read about GABA in your e-book this morning. I’m just having a really hard time comprehending & retaining info, that’s not normal for me. Like I’ve lost the ability to think, thus the reason for believing I have brain damage. But what I did understand while reading, does make sense for what’s happening.

 

Her reason for decreasing the Baclofen was based on previous notes from all these different Drs right now regarding stopping the Cymbalta. Her theory, it was Baclofen causing my problems, not Cymbalta. I did question if that drop was too rapid, that when going from 120mg to 80, it was done by reducing 10mg until I reached 100mg, then 5mg until I reached 80, and all over a much longer period of time. She said that wasn’t necessary, there must be another reason for doing so or they just didn’t know better or I’m confused. I’m so embarrassed for listening to her but I think somewhere in my mind, I simply wanted off these drugs, in hopes of feeling normal again. But yet, I’m bead counting to taper, so that thought didn’t make sense. So I knew, but did it anyway. Her ignorance was no excuse for mine & what I did. I did this to myself, no one to blame but my own stupid self. I just hate myself more now, another deep regret to add to the growing list that haunts me.

 

But regardless, I’m in trouble. It just happened so fast, like somebody suddenly flipped a switch. I’m not eating, showering, getting dressed…nothing. I spend as much time as possible in bed, just to pass the time. If I’m up, I sit in a chair in the dark & think about all the mistakes I’ve made in my life. Lost all interest in everything I enjoyed. I’ve shut everyone out. I’m having a hard time even praying, I don’t feel worthy enough for my God. I’m just cold & empty inside. When I have those hrs of CW symptoms, I almost welcome it because at least I’m feeling something. 

 

I’m wondering if I have any recourse, like maybe increasing the Baclofen again. Or just ride it out & hope. After doing something so stupid, I wouldn’t blame you Hat, if you just wrote me off. I would certainly understand & just remain forever grateful for all y’all have done, to get me this far. God bless you & IUN for all you’ve done for me and so many others. 

[fishinghat]

I had a botany teacher whose favorite word was interrelationships.  He said you can't do anything to a plant or animal without effecting something else. As we would go through class he would teach us about, say pesticides. after the lesson he would always ask "OK how would that effect …". Like sugar transport, stem length, leaf production, etc. One of the toughest courses I had and one that taught me more about complete consideration of all aspects of something. It seems like that is especially true about meds. Every thing effects every thing else.

[invalidusername]

Almost a Buddhist way of thinking there. Just as someone makes a cup of tea, the tea goes to the water, the water gets consumed, that then become water waste which is then back into the rivers which evaporate, then precipitate back onto the tea plant which makes more leaves grow...

 

Unfortunately, when meds come along it messes with the beautiful circle of nature and things go wrong.