Suse: My story

[Suse]

I took Effexor from November of 2020 to July of 2021 and then switched to escitalopram from August 2021 until April of 2022.  I didn't really do a taper at all.  It took about 2 - 3 weeks starting with every other day and then half a pill every other day.  Far too quick, but the side effects of the escitalopram were so bad I just wanted off the medication. 

 

Effexor gave me oral thrush and vaginal yeast infections.  I decided to switch to escitalopram.  Well, I jumped from the frying pan into the fire.  The side effects were horrendous.  Some of them were back pain, sore dry mouth, burning mouth, burning tongue, a mouth full of ulcers, angular cheilitis, diarrhea and the list goes on.  Unfortunately, I was totally failed by my doctor througout my ordeal.  He couldn't figure out what was causing all my problems.  What was happening to me are all listed as possible side effects, but he didn't bother to look this infomation up.  I eventually figured it out through some research that I did on my own and I stopped the escitalopram.  The most tragic event that happened was that my doctor failed to inform me that a month after I started the escitalopram my lipase levels started to rise.  I only found out about my rising lipase levels 9 months later when I was finally able to get on-line to my health information.  I ended up in the hospital with acute pancreatitis.  Once again pancreatitis is listed as a possible side effect of most antidepressants. 

 

Since quitting I have experienced what so many others have.  Some of the withdrawal symptoms I am dealing with are muscle pain, excruciating heartburn and abdominal pain, diarrhea, chills, hopelessness, attacks of terror, sore extremely dry mouth and tongue that has caused gum and teeth issues, painful indigestion, suicidal thoughts, organ pain, etc.  I am very concerned about my pancreas.  The pancreas does not regenerate itself like the liver does.  My lipase evels remain high.  This is concerning to me because my mother died of pancreatic cancer.

 

My back pain was starting to get better until November when I faced a major setback that I am still dealing with.  Another withdrawal symptom is bladder problems.  I have bladder infection symptoms, but all the tests keep coming back negative.  I paid to have a different test done that shows that I do have an infection, but I have to wait until April to see my urologist.  I will be looking into getting a cystectomy.  I can't believe I haven't gone septic.  The setback because of this infection is excruciating abdominal pain, kidney pain, severe gastrointestinal pain, heartburn, suicidal thoughts, and crying all the time.  I really don't want to fight anymore.

 

I am hoping I will be able to write my success story one day.

 

 

Edited March 9, 2023 by Karma
Name update

[Onmyway]

Dear @Suse

welcome to Surviving Antidepressants. Your journey on these drugs sounds horrendous like many on this site. I am so glad that you found us and am looking forward to supporting you here. 

 

You can ask questions about your case here. We generally like to keep your history in one place so we may advise you better. 

You can see how people have dealt with various symptoms in the Symptoms and Care forum. 

 

To start off, can you please summarize your drug signature for us? There are instructions when you click on this link. 

 

 

Hope you are finding some respite, 

OMW

[Shep]

8 hours ago, Suse said:

ultra 718.  Thank you for your kind words.  I am currently struggling with a bladder infection that I have been suffering with for 5 months.  Regular c&s testing has come back negative 6 times.  I sent a test to the States for PCR testing which came back positive.  I have been hypersensitive to just about everything including simple Tylenol, so I am really afraid I will react badly to antibiotics.  My gut is such a mess as well.  I wish you all the best.  Take care.

 

@Suse I copied and pasted this post you put on Ultra718's thread in order to leave you some information in case you need to take an antibiotic. Many of us are sensitive to other drugs, so it's good to know more about them and the different options. Please see:

 

Cipro, Levaquin, Azithromycin (Z-Pack), and other antibiotics

[Suse]

I'm not sure if this is the correct area to post this question or not.  Has anybody had issues with dry mouth that has gotten worse over time instead of better?  I am in month 11 of PAWs and my mouth is definitely getting worse.  Thank you.

[Onmyway]

Hi @Suse

I found a thread where people talk about this. Have you had a test for Sjogren's syndrome? While AD dry mouth etc can mimic Sjogren so it might not be that at all, there are a couple of tests that can help you exclude Sjogren. I have a family member with this disease (not on ADs) and they have some of the symptoms that you describe. Again, it may not be that at all but you may receive some answers by getting the tests. 

 

 

[Suse]

Thank you.

[Suse]

I am in month 11 of my withdrawal and my gastrointestinal problems and heartburn are getting worse.  Has this happened to anybody else?  How long can it take for these symptoms to go away?  Are there any suggestions as to how to help alleviate these problems?  Thank you.

[Shep]

Have you tried any changes to your diet, such as an elimination diet to see which foods are aggravating your stomach? 

 

Please see these helpful links:

 

Digestive problems: nausea, diarrhoea, bloating, GERD

 

Food sensitivities

 

Histamine food intolerance

 

Eating as an activating factor (increasing anxiety or symptoms)

 

On 3/19/2023 at 9:46 PM, Suse said:

ultra 718.  Thank you for your kind words.  I am currently struggling with a bladder infection that I have been suffering with for 5 months.  Regular c&s testing has come back negative 6 times.  I sent a test to the States for PCR testing which came back positive.  I have been hypersensitive to just about everything including simple Tylenol, so I am really afraid I will react badly to antibiotics.  My gut is such a mess as well.  I wish you all the best.  Take care.

 

You mentioned a bladder infection over on ultra's thread. Are you currently taking any medication for this? 

[Suse]

I am not currently taking antibiotics for my bladder infection.  It is complicated as I also have interstitial cystitis.  The last time I had a bladder infection it lasted 3 years.  I have started some homeopathic remedies for my infection.  I have been having stomach issues and heartburn since the beginning of all this, but it is so much worse now.  I took a Tylenol about a week and a half ago and within less than an hour I was very agitated.  I can't serm to take anything and I am actually wondering if it is worth taking the homeopathic stuff either.  I am quite desperate. 

[Suse]

Does anyone know how long into protracted withdrawal someone should wait before having surgery where you would be under anaesthesia for 4 - 5 hours?

[Gridley]

11 minutes ago, Suse said:

Does anyone know how long into protracted withdrawal someone should wait before having surgery where you would be under anaesthesia for 4 - 5 hours?

Because there's no way to know how long protracted withdrawal is going to last, it's not a definite period with a known timeline (like the healing of a broken bone) where you could say, "Eleven months is X% finished with withdrawal."  So there's no way to answer your question.

 

In terms of surgery, you could weigh how your withdrawal symptoms are at present, how stable you've been with those symptoms, and the need for the surgery.   

[Suse]

Thanks for your response.  I was just wondering if anybody had any personal stories.  I appreciate you getting back to me.  

[Shep]

11 hours ago, Suse said:

Thanks for your response.  I was just wondering if anybody had any personal stories.  I appreciate you getting back to me.  

 

I just did a quick search for "surgery" in the introduction sections. Some of these may be for surgeries done before, during, or after withdrawal, so you'll have to weed through them, but they do give members' experiences. 

 

search results for "surgery" in introductions forum

[Suse]

Thank you.

[Suse]

Hi everyone.  Just here with an update about my bladder infection.  I was really afraid to take antibiotics because of the mess my gut is in.  On top of everything else I also have interstitial cystitis (for over 60 years) which makes having a bladder infection very scary.  It took 3 years to get rid of the last infection I had.  This may be a solution for those that do not want to take antibiotics orally.  I just saw my urologist today and I have learned to self-catheterize (it was not as difficult to learn as much as I thought it would) and I will be instilling the antibiotics directly into my bladder twice a day for a month and then we will reassess.  I may still eventually need a cystectomy, but for me right now I am hoping this will relieve my symptoms and might be an option for others as well.  Take care everyone and keep on keeping on.

 

Edited April 12, 2023 by Suse
Just forgot to say my urologist is amazing.

[LostInCanada]

@Susehave you gotten any relief from the reflux. I found some information stating DGL licorice root 75mg twice daily is as effective as PPIs. I have been taking it with success. Also I do not eat 3 hours before bed, take small sips of water during the evening, no citrus at all and I use a wedge pillow. Also an exercise for esophageal reflux is lying on the floor (supine position) and lifting your head for 60 seconds. I did this 2 times a day with success. Hope some of that helps.

[Suse]

Thank you so much.  I am definitely going to give that a try.

[Suse]

I am still struggling with my bladder infection (going on 7 months now) and am interested to know if anyone has tried fosfomycin.  I am scared to try anything right now.  Unfortunately my bladder instillations were a complete and utter failure, and caused me even more problems.

[Shep]

@Suse I did a site search for fosfomycin, but not a lot came up:

 

Site search for fosfomycin

 

Here is some information on this drug:

 

Drugs.com - fosfomycin

 

There is a warning listed:

 

Quote

This medicine has sodium in it. Your hydration and electrolytes will need to be watched closely while you take fosfomycin. You may need to follow a low-sodium diet while taking fosfomycin. Tell your doctor if you have any of these health problems: heart problems, high blood pressure, hyperaldosteronism, kidney or liver problems, high sodium levels, or fluid in the lungs. If you have questions, talk with your doctor.

 

If you're taking other medications, you may want to place them and this new drug in a drug interaction checker to make sure it's safe to take.

 

Drug Interaction Checker

[Suse]

Has anyone had failure or success with probiotics and/or homeopathy for gut issues?  Mine is actually worse than it was a year ago.  It is going to get worse as well as I am going for major abdominal surgery on the 25th.

[Shep]

@Suse Please work with your doctor to access if it's appropriate to start a probiotic or any other supplement or medication before your upcoming abdominal surgery. This is a site for tapering off psychiatric drugs. We aren't able to assist with other medical issues. 

[Suse]

Sorry, I definitely worded my question incorrectly.  I have noticed in some posts that people have said what supplements have helped with their gastrointestinal issues and I was just wondering if anybody had tried homeopathy or probiotics.  I really shouldn't have said anything about the surgery, as I wasn't asking advice about the surgery itself.  I guess I mentioned it because I thought I might need more supplementation afterwards.  Thank you for your response.

[Onmyway]

Hi @Suse,

there is no evidence that homeopathy works for anything. As for probiotics, they work for some things but we don't know that they help with withdrawal. They should not hurt you, at least in terms of withdrawal but not sure if they may have side effects that can create complications for your surgery so it might be better to check with your doctor to make sure that if you take probiotics for WD, it doesn't cause issues for your abdominal surgery.

 

Hope the surgery goes well and you get some respite from all of the stuff you have been dealing with. 

 

OMW

[Tigz91]

Hi @Susehow are you doing? I can relate to so many of your symptoms. 

[Suse]

Hi Tigz91,

 

I am hoping you will receive this reply.  I hope you are doing well.  I have decided not to continue on this platform.  I wish you all the best in your recovery.

 

Suse

[Tigz91]

Sorry to hear you're still struggling with some issues. Have you spoken to anyone about those thoughts? Remember how strong you are and that this is a slow process unfortunately. I'm not great either, I'm 12 months off and I have severe gastro issues. I worry a lot about my pancreas because I get severe upper additional pain and really bad constipation. I think it's also causing absorption issues and I am not able to absorb enough vitamins from my foods. I also react to food where I get hives and itchy skin. I'm here if you ever need to talk. 

[miomio]

On 3/7/2023 at 4:09 AM, Suse said:

my lipase levels started to rise.

HI Suse how does low high lipase detect? Need they search for that specific or do they find that in some other Tests?  Thanks Mirko. 

On 3/7/2023 at 4:09 AM, Suse said:

 

 

[Suse]

Hi Mirko,

 

High lipase levels are detected through a blood test for trycyglycerol lipase levels.  Please look up the results for yourself and see if they are within range.  The normal range will be on the report.  My doctor did not tell me about my rising lipase levels.  I only found out about them when I was able to go on-line to look them up myself.  You have to advocate for yourself.

 

Suse