97 replies to this topic

[justsayno]

Hi everybody , my names Michael and I would like some advice please 

 

I have had two serious seizures now during the last three months and I think it could be down to Cymbalta.

 It really has been a living nightmare for me and my mum.  Almost destroyed us.  Never had any problems like this before and it's knocked me for six.  I believe it's called a ' Grand Mal ' All I recall when it happens is that my right side of my mouth locks tight and I'm powerless to do anything. I always make a loud scream and then wake up wherever and whenever.  My first seizure happened when I went to open the door.  It just took over me and I was powerless.  I woke up on the floor with two paramedics talking too me.  

 Three months later and I'm beginning to get over it , when all of a sudden , whilst watching an episode of the grand tour , another awful sense of de ja vu came.  My mouth locked up in the same place , felt I was being suffocated , an awful scream and I awoke with my mum holding me like I was a little baby again.  Looked around and saw bits of  half digested Pizza on the bed sheets and realised she just stopped me from choking. 

 The seizures are one thing but it's the bloody pain you have for days on end afterwards.  I found it hard to breath , it hurt when I coughed and I couldn't stand. 

 

Anyway , enough from me.   I had an EEG which came back with no abnormalities , my blood test and count was fine.  I'm still waiting on MRI.

From what I can gather from the Neurologists , they are going down the non epileptic route. 

 

Me and my mum though believe it's down too Yentreve / Cymbalta.  I've had problems with this stuff from the beginning which wasn't very long ago.  I was previously on Effexor but had to come off due to Anaphalaxis attack.

Thought Cymbalta would be a good choice . It didn't do anything for me initially , therefor increased it too 40 and I felt it was working. Stayed on this for a while and then I noticed my hives appearing again . They would always come up at the same time every night. I didn't want another attack again so I deiced to lower the dose and this is when the problem with seizures began.  Both seizures have now happened at almost the same time and at the same time as when the hives used to come up. 

 

One last thing if you don't mind. I don't get this but boy is it scary , I had the paramedics out on Sunday because of it and had an emergency appointment today.  I keep getting this weird feeling in the right side of my mouth. Exactly the same as when I would fit but now I'm aware of it. 

I feel my mouth stick but I can open it and I can hear the click when I prise it apart.  It feels so metallic like sometimes and numb.

Don't suppose anyone knows what that could be.  I cannot sleep nor eat because I'm terrified it will happen again !

 

Any advice would be great . Sorry I banged on a bit but me and mum are feeling very jittery at the moment. 

[fishinghat]

Seizures, including Grand Mal are only of the FDA warnings for Cymbalta withdrawal. I will check the medical journals and get back to you in a few minutes.

 

P.S. - Welcome JSN. 

[fishinghat]

Definitely a possibility.

 

https://www.ncbi.nlm...les/PMC3229538/
"Although the risk of seizures with antidepressants is generally very low, the association with overdose is well established [80]. However, the molecular mechanisms by which antidepressants cause seizures have not been clarified. GIRK2 knockout mice exhibit spontaneous seizures and are more susceptible to seizures induced by pentylenetetrazol than wild-type mice [37]. The risk of seizures in overdoses with sertraline, duloxetine, mianserin, and venlafaxine significantly increases [80]–[82], and amoxapine overdose is more likely to cause seizures [83]. "
80. Montgomery SA. Antidepressants and seizures: emphasis on newer agents and clinical implications. Int J Clin Pract. 2005;59:1435–1440. [PubMed]
81. Whyte IM, Dawson AH, Buckley NA. Relative toxicity of venlafaxine and selective serotonin reuptake inhibitors in overdose compared to tricyclic antidepressants. Q J Med. 2003;96:369–374. [PubMed]
82. Isbister GK, Bowe SJ, Dawson A, Whyte IM. Relative toxicity of selective serotonin reuptake inhibitors (SSRIs) in overdose. J Toxicol Clin Toxicol. 2004;42:277–285. [PubMed]
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https://www.ncbi.nlm...les/PMC4683813/
"Epilepsy is a serious condition which can profoundly affect an individual’s life. While there is some evidence to suggest an association between antidepressant use and epilepsy and seizures it is conflicting and not conclusive. "
"Conclusions
Risk of epilepsy/seizures is significantly increased for all classes of antidepressant. There is a need for individual risk-benefit assessments in patients being considered for antidepressant treatment, especially those with ongoing mild depression or with additional risk factors. Residual confounding and indication bias may influence our results, so confirmation may be required from additional studies."
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https://www.ncbi.nlm...pubmed/16534127
Neurology. 2006 Mar 14;66(5):773-4.
Duloxetine-induced syndrome of inappropriate antidiuretic hormone secretion and seizures.
Maramattom BV1.
"The syndrome of inappropriate antidiuretic hormone secretion (SIADH) and hyponatremia is a well known side effect of older selective serotonin reuptake inhibitors (SSRIs) such as paroxetine, sertraline, fluoxetine, citalopram, escitalopram, and fluvoxamine.1,2 The frequency of hyponatremia is around 8 per 1,000 among elderly women receiving fluoxetine.2 Although the second-generation dual blockers, selective serotonin–norepinephrine reuptake inhibitors (SNRIs) such as venlafaxine and duloxetine, are touted to have a wider therapeutic index, hyponatremia is encountered even with venlafaxine. To date, Medline searches do not reveal any reports of hyponatremia associated with duloxetine. We describe a woman who developed severe hyponatremia on exposure to duloxetine and recurrence on inadvertent rechallenge, suggesting the causative relationship of this drug to hyponatremia. "
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http://www.psychforu...topic69139.html
This is a thread about seizures and Cymbalta you might want to check out.
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http://pi.lilly.com/...ta-Medguide.pdf
Under side effects the manufacturer (Eli Lilley) lists seizures as a possibility.
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http://www.ehealthme...mbalta/seizure/
84,701 people reported to have side effects when taking Cymbalta.
Among them, 598 people (0.71%) have Seizure
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[justsayno]

Hi FishingHat , thanks for your reply and I'm sorry it's taking me a while to get back

 

The links you supplied where useful. Some interesting information

 

I do think though that now is the time for me to come a bit more cleaner about the whole situation ...

 I suffer with Multiple personality disorder and OCD and find it extremely hard sometimes to keep on top of things. This is evident in the case of my seizures. They both followed a very similar pattern.  I would be taken two 20 MG Yentreve and run out before ordering in more.   Previously I was only taking 20 , but I increased the dose myself without going back to the doctor.  They then obviously , would run out faster ......

 

When I did run out and it usually happened just before the weekend , I would have to wait for about 4 days and in the mean time , take 30 MG Cymbalta. 

Seizures would then happen.

 

I have a couple of questions I would like to ask you if that's okay. 

 

Do you think I caused the seizures by sudden withdrawal ?

Is there any difference between ' Yentreve ' and ' Cymbalta ' ?    

I read that one is for SUI and the other for anxiety / depression and the two shouldn't be mixed. It's probably nothing as I'm pretty sure it's the same drug and just marketed under different names. 

 

Anyway , I went to the doctors on Monday and I am now reducing this stuff. I'm currently back on my original 20 mg and I feel shit.  I just hope it doesn't cause another seizure !

 

 

Thanks

[fishinghat]

They both should be the same but, having said that, it also depends on the manufacturer as to bead size and quantity. Essentially it is then same medicine. In America it is approved for anxiety/depression and recently approved for SUI. Originally in Europe it was approves for SUI.

 

Going on and off the Y would make your risk of seizures greater. I agree with the dr. Get on just one medication and deal with it.

My sympathies about the multiple personality disorder. It can be difficult to deal with.

[justsayno]

Just a little update

 

I got my MRI results back this week. Normal scan apart from slight shrinkage in the Pituitary gland. 

 

I'm currently on 15 Mg .... Weaning it down about 5 MG at a time every 4 / 5 days

 

Stupid doctor told me at the beginning of the week that it's okay to take a 20  every other day ..... they seriously do not have a clue .... that can make things worse !

 

Maybe a total pain in the backside counting beads but it's the only safe way

[gail]

Hi Justsayno,

Just my opinion here, I do think that 5mg every 5 days is a lot. You know the drill, if it's too much just go slower for a while. Keep updating, we are here for you!

[justsayno]

I think it's more like 3 MG or so but not too sure .. lol

 

But yeah I'm keeping an eye on any untoward effects and thanks 

[justsayno]

Didn't know whether or not to start a new topic about my journey coming off this poison shit but I'll just do it here for now

 

I am so god damn angry and snappy with people at the moment , it is unreal . Paranoid as hell too

 

Think I may have jumped a little too quickly onto this dose 

 

Eli Lilly or whatever your name is + Doctors ....... Go to hell 

 

 

Edit *  I've literally just received a letter through the post from a psychiatrist who I was referred to by my GP asking me to come in for an appointment ...... my GP wanted to know what medication I can go on whilst coming off this crap ....... HA HA HA  ... they got me proper hook line and sinker now haven't they ....Throw more drugs at me , good answer. 

Makes my blood boil.  Maybe if this psychiatrist was around when I first started having mental health issues then maybe I wouldn't be in this situation now , but no , the waiting list for an initial consultation is six months.  So , in the mean time it's so much easier to just prescribe an AD.

Patient won't refuse though ...... He / She just wants to feel somewhat human again .... not their fault ..... no the fault lies at the door of these greedy leech sucking arsehole drug companies, who enjoy making money out of other peoples misery.

[fishinghat]

There are some drugs out there that can help ease the suffering that do not have withdrawal associated with them. Something to consider. 5 mg/4 or 5 days is way too fast. I would suggest no more than a 1% drop per day. A three month or so withdrawal or even SLOWER. The slower the better.

[justsayno]

Okay well I'll try that

 

Could I use pocket scales or something to weigh it out or just keep counting. It just gets a bit confusing at times

[gail]

Hello Justsayno,

Are you on Cymbalta or a generic?

Cymbalta has the same number of beads in each capsule. If so, open a capsule, take out two or three and throw them away. Then 4 or 6 and so on. The generic is another matter.

[justsayno]

Hey Gail

 

I'm from UK and take Yentreve

[fishinghat]

It should have a consistent number of beads. Yes you can weight them but will need a very accurate scale to measure down to 0.01 grams. You can get one on Amazon I am sure.

[justsayno]

It should have a consistent number of beads. Yes you can weight them but will need a very accurate scale to measure down to 0.01 grams. You can get one on Amazon I am sure.

 

Think I'll just continue counting them ;-)  Easier 

[gail]

Hi again,

Out of curiosity, how many beads in your 30mg Yentreve?

Sorry that I missed that info about Yentreve that you had given in a previous post.

[justsayno]

Hi again,

Out of curiosity, how many beads in your 30mg Yentreve?

Sorry that I missed that info about Yentreve that you had given in a previous post.

 

Hi Gail and FishingHat. Thank you both for helping me , it's nice to know you're here

 

My mum is my carer and she divides the beads up for me.  She counted approx 200 beads.  Also to avoid any confusion - I am in fact currently taking 16 MG. I drop 2mg every fives days or so and not the 5mg that I previously said.  

 

I got another thing to add if that's okay.  Since starting SNRI's in the beginning of 2016 I have had daily chronic urticaria and occasional Angeodema. These symptoms would always happen between 3 and 4 AM.  Same time as when I had the seizures. 

Do you think this could be due to the tablet effects wearing off ?   I take my tablets quite late in the day ( around 5 pm ) so the drug would of been in my system for a good 10 hours.

 

The last few days have been a bit weird though since being on 16mg.  My hives are now coming up a lot earlier ( around 10 ) even though I'm taking the tablets at the same time as before.  Is this because the dose is lower and the effects not as long lasting ?

 

I hope that made some kind of sense as I don't really know what I'm doing at the moment      For now though I'll stay on 16.  Got two upcoming appointments in the next few weeks. One with the psychiatrist and the other for a hormone blood test to check if my Pituitary Gland is not causing any problems. 

[fishinghat]

2 mg/week is a much better rate then 5mg.  And you are right to stay at your current dosage until you feel better.

"I got another thing to add if that's okay. Since starting SNRI's in the beginning of 2016 I have had daily chronic urticaria and occasional Angeodema. These symptoms would always happen between 3 and 4 AM. Same time as when I had the seizures.

Do you think this could be due to the tablet effects wearing off ? I take my tablets quite late in the day ( around 5 pm ) so the drug would of been in my system for a good 10 hours."

Unlikely as Cymbalta has a half life of 12 hours and a significant amount would still be in the blood system. I would think that given it started with your taking of snri that it is probably a side effect, especially the Angeodema which is a common one.

 

"The last few days have been a bit weird though since being on 16mg. My hives are now coming up a lot earlier ( around 10 ) even though I'm taking the tablets at the same time as before. Is this because the dose is lower and the effects not as long lasting ?"

 

I would agree with that.

 

Good luck with the dr appointments and I am going to do some checking in the medical journals on your situation and see if I can find anything on point. Be back later.
 

[fishinghat]

The FDA reports that about 0.79% of those people taking Cymbalta develop hives.

I could find no specific research on that subject.

https://dailymed.nlm...?archiveid=1526
This is the drug insert that comes with Cymbalta and the following section states...

"Adverse events reported rarely since market introduction that were temporally related to Cymbalta therapy include: hallucinations, rash, and urinary retention. The following adverse events were reported very rarely: alanine aminotransferase increased, alkaline phosphatase increased, anaphylactic reaction, angioneurotic edema, aspartate aminotransferase increased, bilirubin increased, extrapyramidal disorder, glaucoma, hepatitis, hyponatremia, jaundice, orthostatic hypotension (especially at the initiation of treatment), serotonin syndrome, Stevens-Johnson Syndrome, syncope (especially at initiation of treatment), syndrome of inappropriate antidiuretic hormone secretion (SIADH), and urticaria. "

 

Therefore these should fade as you come off the Cymbalta. It would also explain the change in appearance of this symptom as blood levels of cymbalta change.

[justsayno]

Thanks for that FishingHat

 

Now on 14 mg after being on 16 for a week

 

Had one or two brain zaps and my stomach is a bit iffy

 

I got a letter through from the neurologist the other day. He wants to put me on anti convulsion medication now. He's clearly not listened to a word I've said about it being the sudden withdrawal.  I'm not going on any other medication until I've had a second opinion. 

 

Anyone would think they want you on drugs for the rest of your life ................................................   

[fishinghat]

Thanks Justsayno

 

You are beginning to get down pretty low so don't be surprised if you have to slow down soon.

 

I have had drs actually tell me 'Why would you ever want off?" Of course that was the last time I saw that dr.

[gail]

Hi Justsayno,

My opinion is that an anti convulsion med is good for many illnesses.

It treats a lot of things besides epilepsy. Like depression, bipolar, anxiety(not proved yet)even schizophrenia. And more. I would chose that over an antidepressant anytime.

You know, some of us earthlings do need to be on medication to obtain a certain quality of life.

[justsayno]

I feel extremely low at the moment.  Had about an hours sleep in the past 24 hour 

 

Today is the day I'm suppose to drop another 2 mg but I don't think I can

 

My urticaria and angeodema has gotten worst this week ...  It's worse now than it was when I was on 40 mg     Really don't get that, I thought it's suppose to get better now I'm coming off.

 

Went doctors today to discuss anti convulsion med's which I've momentarily said no to but instead picked up some Valium to help me sleep

[fishinghat]

I think you made a good decision. Stop where you are until stable. With the symptoms you described that may take a few weeks. During that time I would expect your urticaria and angioedema to abate some albeit slowly. The increase in these two symptoms are both directly related to your body's the lack of control of serotonin right now. You need to give your body a chance to adapt.

 

I am a little disappointed in your drs choice of Valium for sleep. Most drs here are now not giving valium but hydroxyzine because it typically is effective for sleep and anxiety as valium and is not addictive. If the hydroxyzine failed to work they could immediately switch you to valium anyway. Just a thought.

[justsayno]

 

The increase in these two symptoms are both directly related to your body's the lack of control of serotonin right now. You need to give your body a chance to adapt.

 

 

Thanks Fishing Hat , that makes sense

 

The sleep is the worst though. I'm knackered but I just cannot switch off. 

[fishinghat]

Did you try Benadryl ?  It usually helps with the sleep and with the anxiety.

[justsayno]

CBD oil helping me with sleep at the moment 

[justsayno]

Well there goes another week.

 

Today I start 11.5 MG

 

Yay ................... 

[TryinginFL]

Nice going, jsn...

 

Hang in there - you can do this!!

[justsayno]

Thanks

 

I still finding it hard to convince medical people that these tablets where the cause of my seizures

 

I have also now surrendered my license. God knows when I'll be getting that back