221 replies to this topic

[fishinghat]

Thanks for the info. When did you first drop from 5 beads a day to 4 beads a day?

[invalidusername]

I needed to catch up here - and a really good read about the leaflet and so forth. I agree wholeheartedly with you Vin. Leaving the "1%" wording in place is like not issuing a recall on a batch found to be harmful. It can make all the difference to those who read it. I am very much partitioning blame on my doctors and NOT ONCE have I been warned of side effects of any of the meds I have taken. Would you buy a car knowing that it has a 50% chance of breaking down on the journey home? Statistics people! We need them to be accurate. What if the doctors only read the leaflet? No-one stands a damn chance...

 

Given your sensitivity Vin, I would say you have at least another couple of days to see a turnaround in the symptoms. My opinion for what it is worth... although speculation remains paramount in all such cases.

[Vinpin]

Thanks to you both.

 

FH: I think the drop from 5 beads to 4 was about 6 weeks ago. I remember being stable on the 4 beads for about two weeks, then made the drop from 4 to 3 on 2/10.

 

-VinPin

[fishinghat]

So it has been about 3 weeks since the last drop. You probably have a few more weeks to stabilize again.

[AliYogini]

Hi VinPin,
Been reading the above posts. Just want to tell you to hang in there. I completed a 15 mos withdrawal from 30mg this Jan and although the whole stretch was hard the end was the hardest. Now that I've been off I still have bad days but not every day. I do like to workout and I've noticed if I do a hard workout it brings a day of withdrawal symptoms right back. Body perceives it as stress and reacts accordingly. If I don't do any exercise I also feel bad. I have to find that happy medium. This is one very ugly drug.
Ali

[invalidusername]

"Body perceives it as stress and reacts accordingly."

 

Interesting observation Ali. Makes perfect sense.

[Vinpin]

Hi friends,

 

The latest from me is that I've attained some stability (thank goodness......). Been more stable for about one week now. Able to skip my afternoon nap and do various other activities - albeit not everything I want to do. Currently at 2 beads twice a day. The new enteric-coated capsules seem to be working out just fine (thank you FH & IUN).

 

Was thinking about a drop from 4 to 3 beads .... but wondering whether I should let myself ride the newly gained stability for one more week before dropping.

 

Ali: Thanks for your encouraging response. Your experiences sound very much "on par" with what others I have said, as well as what I'm experiencing so far. Can I ask you - how long did you take Cymbalta/Duloxetine for, before weaning off?

 

One of the hardest parts is to "live for another day" .... putting aside the things I so badly want to do, and instead just doing the bare minimum of keep up the household for the two of us, washing myself, keeping track of medicines, etc. I can do so much more with my life .... I look forward to the day my head is "on straight", and I can work toward greater life objectives. I hope that day will come.

 

-VinPin

[fishinghat]

If it were me I would wait at least 1 more week to give my body a chance to recover more.

[invalidusername]

Encouraging update Vin - thanks for sharing. 

 

I am in agreement with Hat in waiting at least another week. Enjoy a few more days while you are there...

[gail]

Hi Vinpin,

Oh my! For sure, enjoy your new found stability for a while. Four weeks?

Thanks for the update!

[Vinpin]

Hi friends,

 

Mixed news to report on my end ...

 

The good news is that I dropped to 3 beads eight days ago, and I've handled the drop fairly well so far. I had an anxious episode that lasted a few hours a couple of nights ago, but that's been it. Taking one bead every eight hours, like clockwork. The new enteric-coated capsules seem to be working well. I know my drop from 4 to 3 was a bit quick compared to what many of you suggested, but I SO NEED TO BE OVER THIS ordeal, and even at the pace I've chosen, I still have several drops to go. (even when I get to one bead a day, I'm not going to just drop completely from there - may go to a bead every 36 hours, every 48 hours, every 72 hours, etc.). At least I'm handling the 3 bead daily dosage fairly well.

 

The bad news is that I've come down with either a bad cold or the flu. It was inevitable in retrospect - we hosted my spouse's sister for 5 days, then were out last Thurs/Fri for March Madness action. Too many "hugs & kisses" from too many people - someone certainly "shared" something with me. On an antibiotic, but most likely it is a viral bug and will have to run its course. Because of my asthma, I need keep my lungs as clear as possible now - just started a regimen of Prednisone this morning, and hopeful that will help with my coughing, phlegm and labored breathing.

 

Now for some venting :

 

Ugh!!! When will I ever feel good enough to move on with my life??? It is so, so depressing to me - I just cannot get past all my health issues. I'm 54 years old - not too old to function in ways other than just taking care of my mind and body. Yet .... that's all I've effectively been doing to the last 15 months. And, that's not even taking into account the challenges of my hearing loss disability. Between the hearing loss, the Cymbalta discontinuation and now a possible respiratory infection, I feel I just can't win. Life should be so much more than this .....

 

End of venting......(-:

 

Thanks for listening ...........VinPin

[fishinghat]

"I'm not going to just drop completely from there - may go to a bead every 36 hours, every 48 hours, every 72 hours, etc.). At least I'm handling the 3 bead daily dosage fairly well."

After you stabilize at on e bead you might as well drop to zero as 87% will ne out of your system in 36 hours. If you take the 1 bead at 36 hours you will just repeat the 1 bead withdrawal all over.

"Life should be so much more than this ....."

Amen You are doing well and there is light at the end of the tunnel so hang in there.

[invalidusername]

Hi Vin,

 

Was going to say exactly the same as Hat there with the last bead - you might as well let it go as it could cause more harm than good with the spiking of the levels. It usually does. You just need to take the plunge.

 

Regarding your vent - you are certainly not alone. Since August last year, my notes are consistently reading, dizziness, nausea, cramps, agitation, seizure... there is no let up of physical symptoms. Also had flu a couple of weeks ago, and then doctor diagnosed me with labyrinthitis yesterday. Your words sum it up perfectly, life should be so much more. But I am trying to focus on the fact that despite all these issues, I have had a string of really good days which hasn't happened in a long time. I just don't like the aftermath when your system turns as says "OK, that's enough, I'm throwing the towel in" and your anx/dep kicks in. 

[Vinpin]

Thank you both FH & IUN.

 

OK, I will "take the plunge" once I get stable on one bead per day.

 

Very tough, scary week for me - had some sort of seizure, or just passed out, when I got up too quickly about a week ago. Then Monday .... was driving to an appt, when I got very disoriented and couldn't drive any longer. Made it to an ER, got triaged but decided to just have my husband drive me home without treatment. The episode had passed, and the ER was so incredibly backed up - it just was'nt worth it. But woke up Tuesday still very faint and unbalanced. Decided to go to the ER of a better local hospital. All checked out OK - nothing significant found on a head CT scan and a bunch of other tests. They prescribed Meclizine, but said I should follow-up with a Neurologist.

 

I have an appt with my PCP tomorrow, and will discuss. I'm still not quite right ..... but since they found nothing urgent, I am thinking this is just my head saying the withdrawal, the antibiotic medicine, the steroid shot, maybe some dehydration, and now peak springtime allergens here in Atlanta are all taking a toll.

 

If you guys have any opinions on this, let me know (I value your expertise). Also - do you recommend resorting to Meclizine at this point if the dizziness persists? I would hate to start another medicine ......

 

Best, VinPin

[fishinghat]

Seizures are fairly common as is dehydration and low bp. Do you usually get dizzy when standing?

[invalidusername]

Absolutely - you will read about many seizures in my thread Vin! 

 

Do you have a BP monitor at home? For the sake of $20 it might be a good investment to see any patterns that may emerge from the meds and fluids/food intake.

 

Was also at ER yesterday and walking through the car park and I hoping that it wouldn't be busy. Through the the doors and all seats full, people standing in the door way, people sitting on the floor. I just popped a valium and stayed where I was. I cannot stand crowded, airless places.. let alone a crowded, airless hospital!

[Vinpin]

Hi again .... sorry for being a stranger (on my own thread, no less .....)

 

First, I will answer the questions you guys posed:

 

FH: Yes, sometimes I get a little dizzy when standing up too quickly. My blood pressure has been normal in recent doctor visits .... but it may have been low that day. I do think dehydration was a factor that day; I have made it a point to drink more water .... but still feel at times like I may have a seizure or pass out (see my update below). FH, would a sports drink high in electrolytes help with dehydration more so than water???

 

IUN: No, I don't have a BP monitor. I will look into getting one. Is one more prone to seizing/passing out if your blood pressure is low? Also ... alarmed to hear that you made a trip to the ER in early April, even though you weren't seen. Hope you are hanging in there!

 

Update on me:

Recovered fully from the flu/lung infection I had (thankfully). Decided one week ago to drop from 3 beads a day to 2. By Wednesday and Thursday, was feeling more faint again ..... like my head was detached from my body, and I could seize at any time. Because springtime allergens are still running rampant here in Atlanta, I attributed this as at least a partial cause ..... but I've survived Atlanta's Spring allergy season in the past with minimal issues. Additionally, and interestingly, all of the lightedheadness is emanating from the left side of my head only - and this is always the case. There is a good reason for this .... back in 1996 I had Hodgkin's disease, and received radiation therapy on the left side of my face. This was intended to kill off any cancer cells in my lymph glands on that side of my face, but also had the unavoidable, negative effect of killing off my salivary glands on that side of my face. As a result, I always feel soreness on that side of my face when not dealing with withdrawal effects .... but now, that soreness is more of a deep pain, and it radiates upward toward the top of my head on the left side. And, in turn, I then feel faint and light headed throughout the day.

 

This one symptom is almost too intense to handle .... I'm trying to carry on with life, but the last few days have been so, so difficult. I'm on the L-Theanine (as FH advised), the Alprazolam and extra strength Tylenol .... but I'm not sure any of these are helping with this symptom. Do you guys think the Meclizine would help? Also .... I know there are some anti-seizure medicines available. Would those be worth a shot?

 

Finally - there's hope that this will subside on its own if I stay on the 2 beads long enough, right? And ...... is the drop from 3 beads to 2 typically a difficult one? These last few bead drops toward the end are the toughest to endure, correct?

 

Thanks in advance for your invaluable responses .........

 

Best, Vinpin

[fishinghat]

Hi Vinpin
 
Most sports drinks these days contain mostly sodium and some have potassium. The old days of isotonic solutions are gone. The sodium can actually make anxiety worse. I don't know of any sport drinks that currently contain sodium, potassium, calcium and magnesium in balance. If someone knows of one I would like to know about it.
 
Yes, low blood pressure can definitely make you pass out.
 
Meclizine would be a good thing to try. Also many have had good luck with seizures by taking Lamictal. IUN has had experiences with seizures and may be able to help you out as well. Low electrolytes may cause these dizzy feelings and even bring on seizures. I would suggest a banana when the dizziness occurs, drink lots of water, May be a little milk for calcium.

Yes, if you stay at 2 beads long enough you should stabilize and these last few beads are definitely really tough. You are doing fine just be patient.

[invalidusername]

Hmmm. These seizures need to be considered with everything else involved. If they have only started at this point I would say that the Cymbalta can be a very likely culprit, but it needs to be established whether they are psychogenic or epileptic. The former will not cause you to loose consciousness, although you have often not recall everything that happens during them. If this is the case then I can only inform you that a doctor would put you on an AD. Anti convulsants will not help these. They will pass once it gets our of your system. It has been about 6 weeks since my last one. I am hoping that this will be an end. 

 

So the question here is whether you maintain consciousness during an episode? The PIL is unclear as to what denotes a seizure as I had this argument with the first p-doc I saw. When I told him about PNES (psychogenic non epileptic seizures) - you have to be careful saying the abbreviation(!), he told me that I was not having seizures as I did not loose consciousness. So... why are they called "seizures" then smart-ass?! So the jury is still out on which type of seizure(s) Cymbalta withdrawal can cause - but I am proof of the PNES (sorry, moment to laugh...)

 

As for the remainder, that is Hats territory, but will weigh in on the mention of the medication. A lot of epileptic meds have a history of bringing about depressive symptoms in those prone. In my experience, pregabalin was just that. Pfizer really did a number on suggesting this as an off-label anxiety med I can tell you. Gabapentin has some mention, but not as much.

[fishinghat]

IUN, I don't think Vinpin has actually had a seizure it only feels like one will happen. Am I right Vibpin?

[Vinpin]

Thank you both.

 

I had a very bad day today ... have spent most of the day in bed. Very afraid of standing, let alone leave the house.

 

Seems like I may need a trip to a Neurologist, so he/she can recommend a direction - although I will heed the advice you've both made until then. I just can't bear seeing another doctor these days, but I have no choice I think.

 

FH: I have some Meclizine, but very little. Is it addictive?

 

FH & IUN: I had one episode of passing out several weeks ago, and it feels like it will happen again. Never had one before the recent episode. How can I know if that one episode was psychogenic or epileptic? I "blacked out" when I had it - remember the blackness, and some trembling ... but also I remember thinking "It's OK, It's OK". It last five seconds, and I bit the tip of my tongue such that it bled.....

 

Thanks, Vinpin

[fishinghat]

Not addictive Vinpin but after a few days usage your body gets use to it and it doesn't work again until you have been off it a few days.

My bad, I didn't realize you had actually had a seizure.

[invalidusername]

If you blacked out it suggests blood pressure/oxygenation - particularly if you are lightheaded. The problem is, the lightheadedness can be a result of the withdrawal - as you well know that it is not only the serotonin receptor that is affected when on these meds. Neighbouring receptors are affected which can be anything within the frontal cortex. The side effects that occur when you go on these things are the changes being made. They don't go back, your brain adjusts. It is like your spirit level (you know the things builders use to make sure something is flat) has been put off kilter, so the rest of the brain makes up for it. Now you have unscrambled that egg, this is what is occurring. It is anyone's guess what is going on up there.

 

However, I don't think this was a seizure - particularly if you did not have spasmodic movements through your limbs. 

 

My first port of call would be an O2 monitor and blood pressure monitor. You need to take reading at varying intervals when you feel good/bad/otherwise. If you still need to see a doctor, you will at least be well prepared when you go which will cut out a lot of the BS they try to fob you off with. 

[fishinghat]

I agree with IUN. Low bp probably.

[Vinpin]

Update on me:

 

Still feeling light-headed and unsure of myself on my feet .... but these feelings are slowly getting better. There have been no more fainting spells/seizures, just some lesser "brain zaps" (not the kind I had when I, ill-informed at the time, went cold turkey).

 

Unfortunately, my hyperacusis symptoms are still "through the roof" - no tolerance of noise at all. Hearing aids are exasperating the hyperacusis - everything is too loud and distorted, and as a result, very difficult to decipher speech with even just a bit of background noise. Hard to watch TV at all at this point - because I cannot make use of my hearing aids' telecoils. All noise beyond a low talking voice is not tolerable at this point. I've had the hyperacusis for 7 years - but its never been this bad. And plus, when I get a brain zap, it now triggers a wave of tinnitus that reverberates for a while (varies from a few minutes to a few hours).

 

It's been two weeks since I dropped from 3 beads to 2 ....I'm hopeful some more time on 2 beads per day will allow my brain and body to adjust accordingly, and that these are just withdrawal symptoms and they will subside.

 

Would appreciate anyone's comments on what they went through at the very end .... and why its tougher to get through these last few beads (that is the consensus, correct?????)

[fishinghat]

I don't really know why it is tougher on the last few beads but that has been a very consistent result for most people.

 

Personally, I think you are doing supper. just be patient and all should turn out well.

[invalidusername]

Zaps causing tinnitus - that is a new one on me - but can't say it is unexpected. Just figuring how the two parts of the brain can be linked - assuming that the brain zaps originate in the frontal cortex. But hey - what do we know about the brain! It is one for the creator, I don't think we will ever fathom it completely.

 

Unfortunately I was forced into a 10mg cold turkey so I cannot tell you about the last few beads. But if other symptoms are showing signs of improvement, then it is the old waiting game - and boy do we all know about that. 

 

Echoing Hat's sentiments - you have done so well with this all - a real feat of patience and determination.

[Vinpin]

Thanks FH & IUN for your encouragement.

 

When I get a zap, the electrocution/zap-like sensation sets off a loud "alarm" (for lack of a better term ....) in my head. After that split-second zap, the alarm-type sound my brain is registering remains, and then after about 3-5 seconds the sound quiets down some, but not completely. The remnant, softer alarm sound that remains is what I would call tinnitus - and like I said, that can persist for a few minutes or a few hours until it subsides.

 

So ...... I am explaining this for the purposes of chronicling my "journey" through this withdrawal on this forum. This forum is fantastic for a number of reasons. From an unselfish point-of-view, the intent is to educate others that might be experiencing the same symptoms, so that they might take solace in a "me too!" light bulb moment that is useful to them. But also, more selfishly on my part ..... I obtain invaluable knowledge from you guys on how to handle the tapering and managing my expectations. But also, my posts serve as a "journal" of tracking my symptoms, so I have a record of what I've felt when. I've gone back through the entire thread many times over ....

 

Thanks FH & IUN for all you do ......... 

 

-Vinpin

[invalidusername]

Interesting. Do you have any frequency loss at any point of these moments? Just trying to see if blood oxygen levels are at play here given your previous concerns of light headedness. 

[Vinpin]

Sorry, IUN - have been absent from the forum for a couple of weeks ....

 

Not sure what you mean by "frequency loss" - can you clarify?

 

-Vinpin