Momof3: Intro - 25 months AD/benzo free - severe GI issues

[Momof3]

Hello.  New member here. I am currently 25 months post (long term) AD and (very short term) benzo withdrawal. I accidentally posted my intro and question in the benzo members forum yesterday. Instead of retyping another long post, I will copy and paste my post here to the main forum. It’s is extremely long and detailed. I appreciate any/all feedback. <3 

 

I have read this forum off and on for two years, after being thrown into hell from 13 years of Lexapro/tolerance withdrawal/being switched to two other antidepressants (Effexor and Prozac) in a matter of weeks and a CT off Prozac.  That was March of 2015 (details in signature) 

 

The first six weeks off meds was so good. I felt better than I had in years. Then the akathesia, light sensitivity, derealization, detachment, optical migraines, panic and several other symptoms hit. After six months of that - and completely unaware of discontinuation syndrome, I went back to the dr (in september ‘15) and told him I felt like I was losing my mind. 

 

I was given Wellbutrin. After one day of use, my heart rate was in the 140-160’s. The dr blamed anxiety. Fast forward through three weeks of that and three ER visits, the last ER dr told me to stop the medicine, as tachycardia was a side effect. 

 

Four days later (Oct 2015), I saw a psychiatrist who insisted all of my symptoms were out of control anxiety. He gave me Zoloft and Klonopin - and promised me I would feel better “tomorrow”. That is when the real hell began (as if the former wasn’t bad enough). For 4 weeks, I suffered the most horrific physical, mental and emotional symptoms you can fathom. Finally, in my near death state, my husband and I started digging online for any info we could find . I found this website and benzobuddies. I knew I had to get off the drugs. I was terrified that if I didn’t stop immediately I would die. So I CT’d off of Zoloft on Nov 1, 2015 and one week later, I CT’d off of Klonopin. I lived in absolute agony for 6 months. No windows, just 24/7 torture on every level imaginable. I had literally almost every symptom I have ever read on every withdrawal list I’ve ever found (save for maybe aching toe nails). Finally, in May, I seemed to emerge from the depths of Hell I had been living in - and I saw my first glimpse of “maybe I will live?”

 

 It was still really rough, but I felt like maybe I was finally seeing the light of day. 

 

Months 0-6 Absolute Hell (extreme tachycardia, pounding (like banging), skipping heart , orthostatic intolerance, extreme weakness, unable to sit, stand or walk alone, extreme heaviness in my whole body (felt like I was being sucked into the ground), akathesia, shaking/vibrating/buzzing inside and out, severe burning skin everywhere, rapid fire twitching all over body, touch sensitive, minute pupils, one pupil larger than the other, generally felt like I had been struck by lightening. Unbelievable mental torture, suicide ideation, the most extreme grief, which I am unable to put into words, panic, despair, PTSD, cried almost all day long, every single day. So many more symptoms that I have tried to forget. 

 

Months 6-10 - Finally able to function like a semi human. Still symptoms, but the worst seemed to be over and I had days without most symptoms. Definite waves and windows pattern and all old symptoms returned with less vengeance. Spent the summer with my amazing children at the pool and I felt, although things were far from perfect, the worst was hopefully over. Like I had escaped death.

 

Then Month 10.... 

 

Here is where the intent of this post (extreme stomach/digestive distress) comes into play. In late August, 2016, after I thought the worst of withdrawal was over, I suddenly developed severe stomach problems. It literally happened over night. I thought it was the result of a Z pack I had taken for a sinus infection. That was 16 months ago. 

 

My symptoms are extreme, bizarre and do not present in a way that is recognizable to me or the medical community. Which is why I’m beginning to wonder if this is also related to withdrawal. I could basically sum up my distress by saying that I feel like I have had a horrific stomach virus for the better part of 16 months, but I will attempt to list exact symptom:  

 

Severe burning in stomach (gastritis like),, severe bloating pain in upper abdomen (to the point where I felt my rib cage was being pushed up), horrible chest pressure, feeling food was stuck in my esophagus - even when I didn’t eat, feeling like stomach was being squeezed, severe diarrhea - yellow the first six months (6+ times a day), burning guts (the feeling of diarrhea all day long, not relieved by using the bathroom - usually only intensify’s after BM), nausea, a horrific scalding feeling in my throat, esophagus and stomach, feeling of fizzing/carbonation (as if I had drank a hot Coke) from mouth to rectum, burning/hot spicy mouth and tongue, feeling like I have a stomach flu, lost 15 lbs, unable to eat hardly anything. 

 

There are more, but that’s the gist. 

 

Months 10-20 (Late August 2016 - May 2017) were absolutely unbearable. I don’t know how I survived. I was down to 89 lbs. for all the absolute agony, the endoscopy I had in late October showed no sign of anything wrong. The pain in my chest was so severe, I thought for sure they would see a blockage. They found NOTHING. 

 

The only test that was off was my HIDA scan, which showed my gallbladder was not functioning correctly.  Nov. 2, 2016, I had surgery to remove my gallbladder. It did not help at all. 

 

The following week, I had developed thrush and intense mouth, throat and esophagus burning. I tried Nystatin, it flared up all the previous benzo symptoms so I tried desperately to kill the thrush naturally. The appearance of thrush was gone in a few weeks, however I was left with intense mouth, throat and esophagus burning. That remained severe until around March or 2017. 

 

In May 2017, I went to Cleveland Clinic. The Dr I saw suggested I may have bile reflux and bile acid malabsorption. She put me on a bile binder which did help the diarrhea, but has not resolved it (some days, it’s not helpful at all, while other days I think it is). 

 

Since May, I have seen some improvement - but like the original symptoms of withdrawal, my stomach issues have been persistent, with days or hours of improvement and a very similar symptom shifting and waves/windows pattern (although the windows are not clear and very short lived). I seem to be having another horrific wave of digestive distress over the last several weeks - with symptoms I have not had since early this year rating their ugly head again - maybe in the slightest bit less severe than previous. But still overwhelming. 

 

Has anyone here suffered such strange, persistent and severe symptoms in the digestive tract? Again these symptoms have affected me from my mouth to my intestines (and beyond). I will think things are getting better, then bam.... it all happens again. 

 

As far as the original set of symptoms (months 0-6), I still have waves of those too. They are less severe these days, but definitely still recognizable. Enough for me to say, “Oh yes. Another wave, just slightly different and less severe now”. 

 

The stomach situation, however, has me very confused and honestly - distraught. It throws me because it didn’t start until month 10. I honestly don’t have any idea if this is Withdrawal related or if it’s a completely separate problem. 

 

The fact that no test has found anything, the symptoms are so severe, so long standing, so bizarre and almost defy description - and the fact that they have not responded to anything I have tried,  leads me to question if this is another manifestation of withdrawal. Much like all the other symptoms, that were medically unexplainable after every test imaginable.  

 

Can anyone relate to ANY of these symptoms? If I could hear from other people that they have felt “that exact bizarre sensation” in withdrawal, I would feel some relief. Has anyone had stomach symptoms last this long in protracted withdrawal (16 months of stomach stuff now)? Can ANYONE assure me (based on experience) that this IS in fact likely withdrawal and will some day go away? 

 

I just passed my 2 year mark in November. If the stomach issues would resolve, I would feel about 75%- 80% recovered. 

 

Thanks a million for any and all help. <3

[TedDykle]

Hi momof3,  while not exactly like yours, I can say the GI problems are something that has plagued me during and after use of AD and benzos.  I'm about 14 months off lexapro and tapering off of klonopin.  The diarrhea and "something stuck in my throat" are things I have just embraced and learned to live with over the last 20 or so years.  Like you, no one can find a cause. The reflux, burning, and bloating are not something I've had to deal with so much, though I have experienced them from time to time.

 

Serotonin is a big part of the GI system from what I understand, so I can accept that SSRI use would have an impact on it. 

 

Sorry I can't offer any real help.  I'm on the same slow boat waiting for things to go back to some sort of normalcy.

 

 

 

[Momof3]

Thanks for weighing in Ted! It’s all so weird and so incredibly frustrating. It’s even more difficult for me to piece together because I have always had a fair amount of stomach issues. Although, up until my mid 20’s, it was very much IBS like along with occasional nausea and acid reflux.

 

I suspect bile reflux and bile acid malabsorption is part of my problem that I’ve had for a long time. I am now on a bile binder (as of May) for that. It does help some, but certainly not enough. But I can’t figure out the really weird stuff. The burning and scalding feelings, sometimes an extremely itchy feeling in my chest and esophagus, the bizarre extreme bloating and a few others... I’m wondering if the drugs significantly affected my GI system bc it’s always been a weak spot? The strange part of that theory, however, is that none of the GI issues were a part of the original spiral into adverse reaction and WD hell. The GI stuff happened just as I was starting to get my feet under me after an intense 0-9 months. 

 

Its helpful to hear that you have experienced some of the other symptoms though. Maybe the diarrhea is a part of the WD for me too. I just don’t know. As I said, I’ve had IBS symptoms the majority of my life but NOTHING like this. It was much more of an annoyance. Not a life altering thing. 

 

Thanks again for taking the time to share your experience with me! Wishing you speedy healing. 

[AliG]

Hi M. I'm sorry for what you have been through but glad you found us and shared your story. It's a familiar story and one that such a lot of us have experienced during withdrawal.

Unfortunately, there don't seem to be any easy answers ~ it seems to be one of those symptoms that is individual and can take some time to uncover and also recover from and then get to the cause and ultimately ~ a solution. I believe these drugs mess with pretty much every system in the body and this is yet another set of symptoms, that many seem to suffer from in withdrawal, but can often also be an effect. 

 

 

 

If you read around you will find many in the same boat ~ it's a common complaint. Have a read and then come back here to your thread to ask questions and journal progress. Please read through Symptoms and Self-Care as there is a wealth of information to be found there.

http://survivingantidepressants.org/forum/8-symptoms-and-self-care/

 

Let us know how we can help you ~ there is a lot of information and also support here for you.

Welcome to Surviving Antidepressants ( SA)

Ali

[Momof3]

Sorry it has taken me so long to respond. I did go through all the links provided. I really appreciate the support and the great info! I’m sure I will come up with more questions as I read back through some things today. 

 

Again, thank you so much for taking the time to be helpful!

[xXShatteredXx]

Bear with me a bit because I am also kind of mentally out of it so I will try to answer as clearly as possible... I haven't posted yet on this site, but plan to soon. I wanted to respond to you because something very similar happened to me

I obviously can't say for sure if it is or isn't part of the withdrawal, but I would say very likely. Serotoginic drugs also effect the gut and if you dig enough you will find that Zoloft and Lexapro both list serious GI issues under "rare" side effects. When I say serious I mean things like ulcerative colitis ect. You say you had an endoscopy, have you ever had a colonoscopy?. On zoloft I had diarrhea basically daily and like you I only had an endoscopy not a colonoscopy which would have made the most sense. I was just not taken seriously and told it was just "anxiety." I end up in a severe zoloft withdrawal and now I can barely use the bathroom at all. Finally my endo (who I saw because of crazy symptoms) gave me a CT and discovered I had colitis. The radiologist and my doctor tried to downplay it saying maybe it's from IBS. Well, IBS will NEVER cause colitis. Inflammation is caused from inflammatory bowel diseases.

I'm 100% sure it is zoloft related due to the drastic 360 my stomach took after getting the drug out of my system. I also lost 30 lbs because I can barely eat and when I do breakdown and eat a full meal I have the worst pain of my life. I also have a history of thrush and taking PPI drugs so I thought that was also interesting that you said that. What most doctors won't tell you is that Prilosec, Nexium, ect. also passes through the same CPY enzyme pathways in the liver as the SSRIs do. What this means is, that it increases the blood levels of both drugs and keeps them in your body longer because they all kind of jam up the path making it longer to pass through it so to speak. Therefore, you metabolize it much slower than you should. PPIs also increase the blood levels of SSRIs anywhere from 32-94% depending on which one specifically. So if you are taking 40 mg of Prilosec with 50 mg of zoloft you are in actuality getting doses of 100 mg of the Zoloft. I can see you did take an SSRI at the same time of your PPI which would explain to me your horrendous reaction during the time you were taking these drugs. 

Sorry I don't know an answer for a way out of this hell, just know that you are not crazy and you are not alone on this. If you would like to read more about SSRI and PPI interactions like I was describing to you can check out this study at NCBI https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4297217/