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#31 Overwhelmed

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Posted 06 September 2019 - 12:40 PM

Hat and IUN...thank you both, for your responses. I was doing some wishful thinking, hoping it was just a nasty flu bug. I’ll order the Suntheanine to try & help these headaches, I’ll let you know if it helps. A friend brought me Pepto Bismal yesterday, it’s helped somewhat with the nausea. Also, had forgotten about the other forums here & the search box, so I’ll do some reading, too.

I’m going to try riding this out for now, without adding any beads yet, because I only had the 3 month prescription to taper with (was very lucky to even get that). So, as I continue to taper & this gets worse, I’m thinking I’ll probably need those extra beads later on, more than I do now. If that’s wonky thinking, please tell me. Because I’m getting scared of what’s to come, maybe I’m being overly afraid of running out of the extra beads? In IUN’s schedule for me, I will have “17-18 doses of 30 mgs” left, so maybe I am just being paranoid, I just don’t know. My brain is so scrambled, I’m questioning every thought I have. I’m sorry, I know I’m rambling.

Thank you again, for your input & advice, it’s so greatly appreciated. God Bless.

#32 fishinghat

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Posted 06 September 2019 - 01:08 PM

Hang in there overwhelmed. The most effective thing that members have found for the nausea was ginger. It helped nearly all that tried it.


#33 invalidusername

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Posted 06 September 2019 - 03:01 PM

Hi overwhelmed - first up - download a copy of our eBook here;

 

https://www.cymbalta...tion-the-ebook/

 

This is a 400-page book written by Hat and compiled by myself. There is all the information you need in there.

 

It is perfectly normal to have these fears and doubts during withdrawal. Your brain went through some very strange changes and now it has got to find a way back to where it came from. Expect your brain to come up with all manner of emotions as it needs to catalog them and the responses you have so it again, knows what is "normal". 

 

If you do get scared with the taper, don't hold it in, come back here and tell us and we will sort you out with the best way forward. You DO have enough beads, even if the going get a little touch. Don't think of it in 30mg doses as you will not be returning to that level. You might need to stop at a few doses along the way, but you WILL have enough to get you by - that is why I wrote the plan to ensure you had enough to cover such a scenario!!

 

Take care petal... and go get that eBook and have a good read - that Hat bloke really knows his stuff :)


#34 Overwhelmed

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Posted 13 September 2019 - 03:36 PM

Hat...Oh. My. Gosh. I downloaded the ebook & whenever I’m able to, I’ve been reading. And reading. Thank you so very, very much. I’m in absolute awe of you & your vast knowledge! And your generosity, for sharing that knowledge. IUN did such a wonderful job of putting it together, it’s so easy to find exactly what you’re looking for. This should be mandatory reading for every dr with a prescription pad BEFORE prescribing Cymbalta or giving willy-nilly tapering or cold turkey instructions.

I took your advice about trying ginger for the terrible nausea, that had become a bad case of dry heaves. I also read about it in the ebook & what members here were saying. I had a friend bring me a fresh ginger root (I’m housebound except for dr appoint’s) & have been making tea with it. I scrape the outer skin, chop off approx 1”, grate it & steep in boiling water. It really helps, I highly recommend it for anyone suffering nausea. Also, I had ordered Suntheanine from Amazon, to try for the headaches. They say it was delivered but I never received it, I’m trying to get that sorted out now. In the meantime, this is the 3rd day where it seems things are easing up a bit. Also, for the past 2 nights, that odd sensation in my legs is better, I can feel it but not nearly as intense. Due to IUN’s reassurance (again), about having extra beads when making my schedule, I’m not afraid now of running out of beads. I’m paying close attention to my body & will go up, if necessary. I know symptoms could change but if they continue to stay eased up, like the last 3 days, I feel like I’m ok where I’m at.

Thank you again, Hat, for the ebook, for your advice & encouragement, for everything. I wish I was able to be here more often but we don’t get to pick our health problems or the affect they have on our lives. It’s comforting to know that I can always come here, that y’all know what having CW added on, does. And I’m not down to the worst of it, yet. Saying “thank you” for everything y’all do, doesn’t begin to cover just how grateful I am. From the posts I’ve read, everyone who’s come here for help, feels that same gratitude. God bless.

#35 invalidusername

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Posted 13 September 2019 - 04:28 PM

What a lovely message Overwhelmed - thank you so much. I concur that Hat is truly a knowledge bank of information, and obviously I felt compelled to utilise my IT skills to create the book for people such as yourself. I am so glad you have found this useful.

 

You have definately got the hold of the ginger - works very well as you have already seen, and would be interested to hear how you get on with the Suntheanine once you have given it a fair trial. Some swear by it, and for others it doesn't do much - but for the sake of a few bucks, it is for sure worth it.

 

If there is anything else we can help with, just yell, but it sounds like things are on the straight and narrow for now. Look after yourself my dear.

 

God Bless

 

[edit] will share your message on the eBook thread!


#36 fishinghat

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Posted 13 September 2019 - 05:37 PM

God bless you for the kind words Overwhelmed. Sooooo many helped me when I went through this and I am more than happy to pass on all the help I can.

Thanks again and hang in there.

#37 Overwhelmed

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Posted 14 November 2019 - 10:54 PM

Hi, Hat and IUN. It’s been so very long since I’ve been able to check in. My health issues suddenly & rapidly progressed (not related to Cymbalta or withdrawal) and really caught me off guard. I could barely function, so being on my computer was impossible. Thanks to my neurologist (the one who recognizes CW & helped me get a script so I could slow taper), she has gotten me on my feet again.

 

I’m now on my 4th day of the 1st week of 10mg of Cymbalta. I’d be further along but had I to go slower due to everything else happening. I stayed at 15mg an extra week, then dropped to 12.5mg for a week prior to starting the10mg taper. As far as withdrawal, I really think I’m doing pretty fair...yet anyway. The “body tingling” and “pins & needles”  are uncomfortable but just come & go, so I’m able to tolerate them at this point. I do remember ya’ll telling me to be careful, as it can get a whole lot worse from here on. I’m still finding Ginger Tea to be the best at helping with nausea. I did reorder the Suntheanine for the headaches, I’m not finding that I get any relief by taking them.

 

 

I have a friend who came, stayed with me to help with my care (I live alone) & counted my beads for me during that time. A week ago, she discovered something quite disturbing when removing beads from the original capsules. In the very beginning, I found an average of 180 beads per each 30mg capsule. Due to insurance, I am only able to get a 30 day supply, of the 3 month prescription, at a time. Each refill has been from the same company, last week she picked up my 3rd one. When I received the 2nd refill, she randomly took 5 capsules from the bottle, counted the beads in each one & again, the average was 180 beads. She then continued as I had, by removing the appropriate amount of beads, saving them in my bottle for extra beads & I took the capsule. Three days prior to my starting 10mg dly, she had extra time so decided to count out beads (60) from each capsule for 3 days & start using the empty capsules I had ordered. And decided to make up a few capsules in this manner, so they’d be done. This is when she found what we think is disturbing. She’d remove 60 beads, put them in the empty capsule, repeated it for the 2nd capsule and then discovered anywhere from 20-60 (occasionally 61) beads remaining. So, even though there were 5 capsules randomly chosen from the first 2 refills & they both came out to the same average of 180 beads, this last bottle is really off. OR they were all off & I just happened to get lucky & pick out 5 capsules with the same bead count, give or take a bead. My friend called the Pharmacy to make sure, even though the bottle stated the same company name, they were in fact from the same company. The pharmacist verified they were. It’s not just disturbing, it makes me angry that this company can be SO irresponsible with the doses in their product. This means if I was taking them as is, without tapering, I’d have no idea that my daily dose would be so erratic. It’s no flipping wonder this drug created the horrid problems & side effects it has for its victims. 

 

I apologize for this message getting so long. I do have to get off here now, will check in when I can. I pray y’all are doing well. Even though I haven’t been here, your in my thoughts every day as my taper continues. May God bless you both for all you’re doing for so many of us. As always, thank you with all my heart.
 

With prayers to all for strength and courage...Sharon


#38 fishinghat

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Posted 15 November 2019 - 09:00 AM

Hi Sharon

 

You have done an excellent job in managing your withdrawal so far. Slowing down so you could manage your issue was a wise decision.

 

As far as the bead count is concerned, it is a very good thing your friend caught that. It sounds like a fill error. It is uncommon but sometimes the equipment will malfunction for a second and not put enough medicine in the capsule. I have found misshapened tablets a few times in prescription as well as over-the-counter drugs. Your friend deserves a big hug for finding that. lol


#39 invalidusername

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Posted 15 November 2019 - 09:32 AM

Great to hear back from you Sharon...

 

Exactly what Hat has said - your friend did an amazing job there. It pays to be vigilant, but you are right in that we shouldn't have to be in this day and age.

 

Regarding the headaches, what dose and frequency of the suntheanine are you on? If you are taking a suitable dose, then it is time to try something else. There are plenty of alternatives - but we also need to make sure that the suntheanine isn't keeping you stable in other respect such as stress or anxiety. I wouldn't want you to stop it only to find another symptoms is exacerbated...

 

IUN


#40 Overwhelmed

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Posted 16 November 2019 - 11:16 PM

Hat and IUN...thank you both, for your responses. You’re right about my friend, Tina & her fiancé are two of the dearest friends one could ever ask for. 
 

The dose of Suntheanine I’m taking is 400mg daily (2-200mg gel caps). I don’t feel stress is a problem but anxiety is, I’ve been managing it fairly well (so far) with relaxation & breathing techniques. But this headache, it’s a constant pressure, like my head could just explode. It gets so intense at times, that I have to lay back so my head is supported, any movement makes the pain worse. They’re the one thing that I just can’t seem to get under control. I honestly believe it’s the Cymbalta withdrawal causing it. If y’all have any further suggestions, I sure would appreciate it. Thank you both, so very much. 
 

*I hope I’m doing this right. I hit edit to add: These headaches definitely don’t feel anything like what others describe as “brain zaps” (thank heavens).


#41 invalidusername

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Posted 17 November 2019 - 08:04 AM

OK - so it is a fair trial of the Suntheanine. The safe/effective highest dose is 600mg/day, so you are not far from that. You could try this, but if you are not getting relief whatsoever from the 400mg, the I wouldn't expect a great deal more.

 

Brain zaps aren't headaches per se. They are like a brief second in time when your head seems as though it has been detached from the body - they are quite strange, and in frequent doses are very disturbing. But the giveaway is that they are split second things. I don't think anyone could cope with a zap lasting any longer - I shudder to think. There are so many different ways to describe it. Most also feel like a jolt of electricity going through the head too. Other call them reboots as it is like your head goes "offline" for a second, just like resetting a computer or phone. Whilst they can be accompanied by headaches, the headache itself isn't often an indication of the zaps, and it is not uncommon for people to go through an entire withdrawal with the zaps. In fact, headaches are more likely than the zaps....

 

I assume you have tried the standard pain killer route for these episodes?


#42 fishinghat

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Posted 17 November 2019 - 09:24 AM

Here are some of the things that members and medical research have brought to our attention...


1) Cymbalta withdrawal often causes low blood sugar which in turn can cause headaches. Next time you have a headache take a small amount of sugar and see if it helps. Don't get too carried away because too much sugar can make anxiety worse. Also, in my area many pharmacies will run a blood glucose test for free.


2) Meclizine, a common ingredient in some anti-dizziness medicine e, can often relieve these headaches.


3) Hyponatremia, low blood sodium, is frequently caused by Cymbalta withdrawal and contributes to headaches. If this is the case then a small amount of table salt should bring some relief in just a few minutes. As with sugar, do not get carried away as too much salt can make anxiety worse.

#43 Overwhelmed

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Posted 17 November 2019 - 10:31 PM

Hi IUN. Thank you very much for responding.

 

I agree about the Suntheanine. If I had obtained any relief at all, I’d go up to 600. If I can’t obtain relief with anything else though, I will.

 

I really appreciate your description of “brain zaps”. I haven’t experienced anything like this, I’m sad for those that have. But at least now I’ll have a better idea of what’s happening if they start. I do realize, thanks to y’all, a lot can happen between now (at 10mg) & the end of my tapering. Or even after. That’s one of the many things I really appreciate here, ya’ll’s honesty about what can happen. It helps me, I’m sure everyone else, too, be prepared and if I get lucky & it is doesn’t happen, then I just have more to be thankful for.

 

With prayers and gratefulness...Sharon


#44 Overwhelmed

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Posted 17 November 2019 - 11:25 PM

Hi Hat. I appreciate you responding.

 

Thank you so much for the tips! I just happened to have an unopened box of Meclizine. I had picked it up when the nausea started in the beginning, along with Dramamine & Pepto Bismal. About that same time, is when I also got the fresh ginger root  & started making ginger tea. I used the Dramamine a couple times, the Pepto a little more, but when I found the tea worked so well for me, I just stayed with that. Ginger tea made with fresh grated ginger root is definitely my “go to” for nausea. Anyway, after reading your message just now, I stopped & took 25mg of the Meclizine. It says 1-2 tablets, if 1 doesn’t help, I’ll take another one. I’ll also keep the sugar & the salt tip in mind & try those, too. I have dr appointments tomorrow but will let you know as soon as I can, if I get relief.

 

Thank you again, for your help. I feel so much gratitude to you & IUN. God bless...Sharon


#45 invalidusername

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Posted 18 November 2019 - 06:07 PM

Hi Sharon.

 

That's right - Hat and myself do not sugar-coat things I'm afraid... we say it like it is - in the best means possible of course.

 

And hey! You went with the ginger root tea! Marvellous - so glad that this helped... and so much cheaper than using 17 tea bags to make the same concentration :)

 

Hat is absolutely spot on. The difference a diet can make is substantially greater during a withdrawal, to the point that some need to chart all their intakes to ease some of the symptoms. It is a joke that these measures have to be taken for just a bit of relief, but this is, unfortunately, the reality...

 

God Bless

 

IUN


#46 Overwhelmed

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Posted 31 January 2020 - 05:30 PM

Hello, Hat and IUN. I simply have not been able to be here for far too long…again. Not being able to discuss concerns or anything else with ya’ll, has been difficult. I’m simply muddling through, at best. & losing ground with that. My last update was Nov 14th, 2019, I had just started the taper at 10mg. I’m now at Stage 2 of my schedule. Because of the worsening affects of even more health problems, my neurologist was able to give me another 30 days of the 30mg capsules, to use “just in case”. Her concern is these new issues, being so complicated, could cause even more of the already unpredictable effects of CW. She wanted me to be able to slow my taper, if need be. Although, from a neurological perspective, she’s very concerned about the effects the remaining Cymbalta might be having, she continues to recognize & stress the importance of tapering correctly. None of my other drs (10 specialists involved now) know that I’m tapering the Cymbalta.

 

So far, about the only change I’ve made in Stage 2 is, instead of going 1 week between each taper, I’ve been going 2 weeks. Using this “every 2 weeks vs. every week”, I started the 2nd week of 40 beads this past Sunday (01/26th), then will start 35 beads this coming Sunday (02/02nd). The physical withdrawal symptoms are very apparent the first 3 (maybe 4) days after I taper. By the end of the week, symptoms aren’t even noticeable. If they are there, they’re mild enough that other health problems are overriding them & I’m just not aware. I consider myself extremely lucky, although I do know this could change. The symptoms those first days are nausea/vomiting (still using ginger tea from fresh ginger root), very nasty headache (Meclizine does help), dizziness, intense full body tingling day & night, and restless legs at night. BUT I’ve been  on an emotional “roller coaster”. The trouble is, I don’t know if it’s due to the CW or due to the impact all the health problems are having on my life. Or maybe both. With these rare problems surfacing so rapidly now, it’s been impossible to find a balance, I’m in a constant state of turmoil. One of my adjustments is to the severity the Photophobia has now reached (due to corneal damage), light not only causes intense pain but also blindness. I wear special dark glasses in my home (I can control the light, keeping my environment dark) & black-out glasses to, from & at drs appointments, which is the only time I leave my house. Due to my health, I’m so isolated & not by choice, the combination of losses it’s caused, are immense. I’m not feeling self-pity or anger, I’ve just been so sad & scared, with extreme, crippling anxiety & stress. But then 4 days ago, I reached a point where I suddenly shut down emotionally, stopped feeling anything at all. As if my brain was on the verge of exploding & somebody hit the safety switch, just in the nick of time. It’s an empty feeling, I have no idea how long this will last or if I should try to be worried or just what to do. Although this time it’s much worse, this emotional numbness is reminiscent of the lack of feelings I experienced while on much higher doses, but had slowly gotten better with tapering. I had regained the ability to feel again, to laugh & cry etc. I had also experienced suicidal thoughts during the 120mg doses, which also passed with tapering & have not returned. I’m telling y’all these things so you can see why I can’t pinpoint what’s causing what. I just don’t know, I suspect there’s no way for anyone to really know. All I know is I’m lost. And confused about what’s happening in my brain.

 

So, I’m wondering if can please have your thoughts/opinion about: 

1) Going back to the way ya’ll had me tapering in the first place…dropping 5 beads every week. But if symptoms start lingering longer        than they have been, go 2 weeks or longer if need be, until they pass. 

2) Should I tell my other drs that I’m slow tapering the Cymbalta? 

3) My emotional problems, due to CW or as a result of the health problems? I know, y’all don’t have magic answers to this & I don’t mean to put you on the spot, so to speak. I’m just hoping you can maybe tell me if the CW could be the cause of these emotional problems, at this point in tapering, even if I didn’t have the other health issues. 

 

Thank you both, so very much for any insight you can possibly give me. I do apologize for such a lengthy post & for taking up so much of your time. I wanted to shorten this but was afraid if I did, I’d remove points that are maybe important, with my asking for advice. 

 

God Bless You Both...Sharon


#47 fishinghat

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Posted 31 January 2020 - 06:36 PM

Hello Sharon, I am glad to see you are doing well. Oh yea, well. At this stage of things I usually see people take a month or more to drop 5 beads. And your symptoms are bad but sort of standard for Cymbalta withdrawal. Yea, it is a horrible experience for sure. My suggestion would be to drop 1 bead every 2 weeks or longer. Dropping 5 beads at this stage of the situation is too fast.


#48 invalidusername

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Posted 01 February 2020 - 01:17 PM

Hi Sharon...

 

That is quite a lot to take in and I am really sorry for what you are presently going through. It will be very difficult to separate the symptoms from the withdrawal and the other factors, but this is just one of those things that can never be rectified, which is why we always tell people to try one supplement at a time so as to pinpoint the efficacy accordingly.

 

I think telling the other members of the medical community will only make things worse and that you will be pulled in every conceivable direction. 

 

Regarding the taper, I am with Hat, that considering the above, it is not so much the time scale as it is the drop. I think it will be easier to lower the drop to 1 or 2 beads rather than 5. Even at the same time frame this should yield an improvement... 


#49 Overwhelmed

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Posted 01 February 2020 - 07:53 PM

Hat & IUN...

Thank you both for your input. I will follow your advice, starting tonight, by dropping just 1 bead instead of 5, which will put my count at 39 beads. I’ll wait 2 weeks & then evaluate how I’m doing, before considering dropping another bead, and continue tapering at this slower rate. Got it. Having the extra 3 months of capsules, allows me to take as much time as I need, to safely reach the end. Both physically and emotionally. Also, I agree about not telling my other drs about tapering. I think I’m just questioning everything I’m thinking & simply needed to hear that, yes, I should keep my mouth shut. 

 

I’m embarrassed for dumping my situation on y’all like I did and apologize for doing so. Being here has been a blessing & a privilege, as y’all are a Godsend to myself & so many others. I’m truly sorry for pouring out information unrelated to CW. 
 

Thank you again, for your help, kindness & patience. With prayers and immense gratitude...Sharon


#50 invalidusername

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Posted 01 February 2020 - 08:17 PM

I think this is for sure the way to go. We are all aware of how difficult the patience can be to tolerate, but given the alternative, it is worth it in the long run.

 

And you have no reason to apologise for "dumping" anything on us. I am sure I speak for Hat as well in saying that we are only too happy to help. We'd much rather you be here where we can help you than not. Never hold back if you need anything Sharon - we mean that quite sincerely. Don't suffer in silence. You can mention what you will - CW related or otherwise - if it will help.

 

Be kind to yourself and take it slow and easy.

 

God Bless.

 

IUN


#51 fishinghat

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Posted 02 February 2020 - 09:32 AM

IUN reflects my feelings as well. I remember "dumping" on a lot of people when I went through my withdrawal so don't feel bad.


#52 Overwhelmed

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Posted 05 February 2020 - 09:30 AM

Both IUN and Hat... I cannot tell you what your understanding of my pouring everything going on to ya’ll means to me. Your kind words were just as helpful as your advice to slow the amount of beads for each drop. I have such a deep respect for you both, so to hear that you’ve also done this “pouring out & dumping” of your situation & feelings during dark hours, helps ease my quilt. Thank you so very much for your empathy & honesty. 
 

I will continue to check in when I can.

 

May God be with you both as you both continue your journey. Sent with prayers & unending gratefulness...Sharon


#53 fishinghat

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Posted 05 February 2020 - 09:50 AM

Sharon, I am speechless. I am also deeply honored by your comments. We will always be here when you need us.


#54 invalidusername

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Posted 05 February 2020 - 05:30 PM

...absolutely. Hat took the words there. Thank you so much Sharon.

 

Very tough day for me today, so your timing was impeccable.


#55 Overwhelmed

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Posted 16 March 2020 - 06:31 AM

Hat & Iun…I’m in a predicament, I need to ask for your guidance again (sigh). I’m so sorry for the long post, I just want y’all to have all the info you need.

 

I last talked to y’all the first of February. At that time, I was an emotional wreck. I truly believe now that the major cause was my best friend of years having a massive stroke. She’s doing better than expected with rehab & I’m emotionally stable again. Well, except for increased anxiety, which I’m sure, is due to the following…

 

First…on March 2nd I had a heath check. My B/P & pulse was very low & ECG was abnormal. B/P & heart rate continued to drop over the following days. Had a Chemical Stress Test last Wednesday. Heart is healthy but states at risk due to low B/P & heart rate. During all this, dr’s tapered me off the beta-blocker (Metoprolol 50mg) I’ve been on for years for Paroxysmal Atrial Tachycardia, hoping to bring B/P & heart rate up. Tachycardia had been well controlled, but last dose of 12.5 mg was this past Wed (11th). Now the atrial tachycardia is out of control, B/P dropping to 60/46 & pulse 110-120, goes up for short periods of time & immediately drops again. I’m experiencing all the nasty symptoms that go with it. Very weak, lightheaded & lethargic. Due to dizziness, last night crawled on hands & knees to go to the bathroom. Also, sodium levels have been steadily dropping below normal. And liver function tests are abnormal, the absolutely only risk factor applying to me for cause, is the Cymbalta. I’m having periods of confusion, can’t think straight. Dr’s assured me this will resolve as they get things straightened out, I’m simply not getting adequate oxygenated blood to my heart & brain right now (?). And saying low sodium also causing confusion. 

 

The problem…none of these dr’s know I’m tapering Cymbalta (except neurologist & she’s not involved in any of these latest events). They believe the prescription she gave me was to continue taking Cymbalta (not to use for tapering) versus stopping CT at 30mg, like my Primary wanted last July. I’m now seeing a new Primary who, after going thru my records & seeing my side effects, also wanted me off BUT disagreed with stopping CT, unless it was absolutely medically necessary. We were to discuss a slow taper plan in September but other (unrelated) health issues took over. I planned on discussing it with her again during this visit but this mess happened. All these drs now involved, believe Cymbalta has a lot, if not all, to do with what’s going on. They’re saying I’m in serious trouble health wise, so once again, I’m hearing I need to stop.

 

To make matters worse, with the mental confusion, I made a terrible mistake in my bead counting. I had already been at 34 beads for 7 days on March 8th & planned on holding there longer but on the 9th, I got it mixed up & realized this morning, I’ve only been taking 24 beads daily these past 6 days…a sudden 10 bead drop, which certainly could be adding to my problems this past week. So…

 

Should I add those 10 beads back in again, now that I caught my mistake? Maybe that’s what’s made the tachycardia even worse this week? I’m at a total loss as to handle this mistake. And are these new health issues are a circumstance where I maybe I should do a more rapid taper? If I do end up in the hospital for monitoring, I’m afraid they’re either going to do a CT or if they give me Cymbalta, it’ll be the 30 mg they think I’m on.

 

Again, I’m sorry this is so long. I just never know how much information is too much or not enough.

 

Thank you both, so much. God bless. 


#56 fishinghat

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Posted 16 March 2020 - 09:07 AM

OK, lets take thius one step at a time.

"ECG was abnormal. "

 

Where you given a medical diagnosis in how your ecg was abnormal. If not, please contact the drs office or get on your internet portaland find out the answer. This is important.

 

"During all this, dr’s tapered me off the beta-blocker (Metoprolol 50mg) I’ve been on for years for Paroxysmal Atrial Tachycardia, hoping to bring B/P & heart rate up."

 

I have suffered from PAT since childhood. I used to be on atenolol (beta blocker)to help control it but have since learned to control it myself. During normal periods I would have 1 to 3 episodes a month but during withdrawal I went to 4 to 5 per day. That all subsided as withdrawal went away.

"Tachycardia had been well controlled, but last dose of 12.5 mg was this past Wed (11th)."

What you are experiencing now is called rebound effect. It will last about 2 weeks before rapidly fading away.

"Now the atrial tachycardia is out of control, B/P dropping to 60/46 & pulse 110-120, goes up for short periods of time & immediately drops again. I’m experiencing all the nasty symptoms that go with it. Very weak, lightheaded & lethargic. Due to dizziness, last night crawled on hands & knees to go to the bathroom. "

 

This part concerns me. My wife and I have both been off and on beta blockers (hers is propranolol) several time and the blood pressure ALWAYS spikes upward for a couple weeks. Your symptoms are consistent with low blood pressure but that should not be happening at this point. That is why the ecg diagnosis is important.

"Also, sodium levels have been steadily dropping below normal. And liver function tests are abnormal, the absolutely only risk factor applying to me for cause, is the Cymbalta. "

 

Cymbalta is well known to cause low sodium and altered liver function test (ALT and AST) during use and during withdrawal. The low sodium may be one of the causes of your symptoms as well as recently stopping your beta blocker. I would like to know your sodium levels and AST and ALT values if you don't mind. Our ebook has a lot of medical journal articles on the sodium and some on the liver issues as well.

"I’m having periods of confusion, can’t think straight. Dr’s assured me this will resolve as they get things straightened out, I’m simply not getting adequate oxygenated blood to my heart & brain right now (?). And saying low sodium also causing confusion. "

 

Absolutely correct. Several of our members have experienced low sodium during withdrawal and had symptoms like yours. Sometimes the sodium would get so low as to set off seizures. All of this did fade with time and some did have to go on medication for a short time.

"The problem…none of these dr’s know I’m tapering Cymbalta (except neurologist & she’s not involved in any of these latest events). They believe the prescription she gave me was to continue taking Cymbalta (not to use for tapering) versus stopping CT at 30mg, like my Primary wanted last July. I’m now seeing a new Primary who, after going thru my records & seeing my side effects, also wanted me off BUT disagreed with stopping CT, unless it was absolutely medically necessary. We were to discuss a slow taper plan in September but other (unrelated) health issues took over. I planned on discussing it with her again during this visit but this mess happened. All these drs now involved, believe Cymbalta has a lot, if not all, to do with what’s going on. They’re saying I’m in serious trouble health wise, so once again, I’m hearing I need to stop."

 

I find this is also my opinion as well. Your other drs need to know you are still on a low dose Cymbalta. It is important they know that. Stopping cold turkey is not a recommended procedure but sometimes it has been necessary because of issues like this.
I would like to know the answer to the above questions before commenting further on the CT.

 

"To make matters worse, with the mental confusion, I made a terrible mistake in my bead counting. I had already been at 34 beads for 7 days on March 8th & planned on holding there longer but on the 9th, I got it mixed up & realized this morning, I’ve only been taking 24 beads daily these past 6 days…a sudden 10 bead drop, which certainly could be adding to my problems this past week."

 

I am sure that this has added to your anxiety symptoms but should have helped the bp issue for sure. This is sounding more and more like a low sodium issue and needs to be addressed. I look forward to seeing your lab sodium values.

 

"Should I add those 10 beads back in again, now that I caught my mistake? Maybe that’s what’s made the tachycardia even worse this week? I’m at a total loss as to handle this mistake. And are these new health issues are a circumstance where I maybe I should do a more rapid taper? If I do end up in the hospital for monitoring, I’m afraid they’re either going to do a CT or if they give me Cymbalta, it’ll be the 30 mg they think I’m on"

 

I would stay at the current dose of Cymbalta and not go back up the 10 beads as your drs may want you off it asap. Besides if you do go up the 10 beads it may drop your bp even more. After I get the information I requested above I may be asking you some more questions. Hang in there.

 

"Again, I’m sorry this is so long. I just never know how much information is too much or not enough."
No problem. I am sorry my answer was so long also. lol
 


#57 Overwhelmed

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Posted 16 March 2020 - 11:47 AM

Thank you so much, Hat. Just talking to someone who knows what I’m talking about, is such a relief. I just got back up again, feeling  so much better right now, not so weak & lightheaded, & feel like I’m thinking clearer. Headache is so much better, too. Just took B/P, it’s 140/84 & pulse is 98. Maybe this is starting to turn around? 

 

The ECG was showing Septal Infarct, age undetermined and also Bradycardia. The Stress Test proved the Septal Infarct to be an error, which I know can happen. 
 

I just went in & looked at past & now current labs. Sodium levels over course of past months...135, 130, 128, 128, 124 & latest from this past week was 120 . This last level was from the  new Primary checking, she’s upset they’ve been dropping & ignored. She’s had me increase my Sodium intake & reduce the high fluid intake I’ve been doing. I’m to check in with her at noon, I’m going to tell her that I’ve been tapering the Cymbalta & where I’m at with it. I will let you know what she says.

 

This week, I’ve been sweating profusely, I’m thinking from the accidental 10 bead drop? The tingling/prickly body sensations have been very minimal & no brain zaps etc. I know I’ve been so very lucky with CW symptoms. 
 

Thank you again, what a blessing you are to me. I hope I’ve covered the extra info you needed. 


#58 fishinghat

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Posted 16 March 2020 - 01:16 PM

"Just took B/P, it’s 140/84 & pulse is 98. Maybe this is starting to turn around?"

That is more like it.

Bradycardia is a slow heart rate and is not unexpected. That is a good sign.

"I just went in & looked at past & now current labs. Sodium levels over course of past months...135, 130, 128, 128, 124 & latest from this past week was 120 . This last level was from the new Primary checking, she’s upset they’ve been dropping & ignored. She’s had me increase my Sodium intake & reduce the high fluid intake I’ve been doing. I’m to check in with her at noon, I’m going to tell her that I’ve been tapering the Cymbalta & where I’m at with it. I will let you know what she says."

That sounds like a great idea. Stopping the extra liquids and upping your intake of sodium should help.

"This week, I’ve been sweating profusely, I’m thinking from the accidental 10 bead drop?"

Probably.

Yes, so far you have been very lucky. Lets hope it stays that way.

#59 invalidusername

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Posted 16 March 2020 - 04:21 PM

Hi Overwhelmed...
 
Looks like Hat has got you off to a good start there. I was already in agreement over the bead situation before I read Hat's response. I agree that staying put is the better of two evils. Time is what is required rather than change in these present circumstances.
 
Regarding the hospital not knowing... I am not sure how the health system works over the world, but in the UK hospital, the "pill lady" comes round in the morning with your dose and stays while you take them. I have been in a similar situation and I simply slip it under my tongue, swig some water and then take it back out after they have gone!! Then you can remove the beads and take your normal dose :)
 
Again, agree on the sweats front - more than likely a direct result from the drop. So once more, time will be the signs that are needed are more consistent data as that which you have shared thus far.
 
Any anomalies following a more consistent regimen would require looking at further, but suffice to say that you will monitor the drop more closely and thus, the symptoms should reflect that which has since shown to be favourable.
 
Keep us posted...
 
IUN

#60 Overwhelmed

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Posted 11 April 2020 - 06:35 PM

Hat and Iun, I’m so sorry I haven’t been back here to update ya’ll. A nasty TN flare put me out of commission for a while. And there’s been other situations thrown into the mix (mess), including being without a doctor now. First, I need to back up…

 

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 last spoke with my Primary 3/16, she again firmly stressed, I need to stop the Cymbalta. I told her I was tapering by bead counting (she’s the one who was going to discuss slow tapering months ago, but never had the opportunity), also told her I was receiving assistance through a Cymbalta Withdrawal Support Group. She was ok with everything I told her, was just disappointed that hadn’t notified her. At that time, I was still at 24 beads. In her opinion, with the dose that low, the negative effects of staying on it outweighed the side effects of just stopping without further tapering. She still believed it’s the probable cause of abnormal labs, & the tachycardia if it didn’t improve after the rebound period. So, I was to stop Cymbalta, contact her the following Monday.

 

Then things went wrong. First, I didn’t stop the Cymbalta (I got scared). Called her that Monday (3/23), was told she wasn’t seeing patients but would be returning at a time to be determined at a later date. Apparently, after speaking with her the 16th, she left the following day for 5 days in Florida. Due to possible Covid-19 exposure, she’s quarantined. Our State is now under a Stay at Home order, unless an emergency, appoints with the one remaining dr is done by phone, I finally was able to speak with him yesterday. I told him about the PAT still being out of control, he assumed I’d been off the Cymbalta for a month, so wants me to start 25mg of Metoprolol ER again because “obviously, Cymbalta wasn’t the cause” (his words). He also believes that my sodium (based on lingering symptoms), although may be better, is not where it should be & once again said “Obviously, Cymbalta wasn’t the cause there either”. Well, yeah, it could be, I’m not off it. I’m to follow up with my Primary when she returns but no one knows when that’ll be. 

 

Sooo… I don’t know what to do. I’ve still been tapering, I’m down to 18 beads. If that’s the cause of the tachycardia being so bad, I don’t want to start back on the Metoprolol. And then there’s the sodium deal, and who knows what my liver situation is. I’m frustrated with myself. My only CW symptoms have been mild, body prickling sensations & heavy night sweats. What I’m so, so scared of is, if I just suddenly stop, all hell will break lose & my brain will never heal. I’m not afraid of being miserable now, I’m afraid of future problems. So then I wondered if I dropped 1 bead every day, or every 2 days, would that work, or maybe not really be different then CT. The bottom line is, I have to stop, either CT or a whole lot faster than I am. I’m stuck & need to get unstuck. Now.

 

I’m sorry ya’ll, once again, this is a very long post. God bless you both for your patience...Sharon





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