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Minocycline Medication Caused DP/DR. Recovery/Help


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#1 LiveLife30

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Posted 03 January 2014 - 01:41 AM

Hi guys this is my first post on here and essentially I am doing this to spread information about the antibiotic minocycline and my experience with it. I took this antibiotic about 2 years ago for acne. I was prescribed 100mg tablets taken twice daily. Since then my life has changed completely. The side effects began with strong fever accompanied with vertigo (Severe dizziness). A few days after being on the medication I woke up and felt "different". I felt foggy, detached from my body, looking at my hands I didn't feel like they were mine, also sometimes didn't recognize myself in the mirror (Scariest moment of my life, kept staring at the mirror waiting for the person AKA my reflection to make a movement that wasn't done by myself...crazy). Also, my perception appeared to have altered in terms of things appearing farther away than they actually were, began to see eye floaters and what I can only describe as sparkling/shimmering dots on walls (best way I can describe it, almost like white blood cells jumping around my vision). Needless to say that sure was an eventful day haha. Since that morning my life has never been the same. To put it lightly, I went through a solid year and a half of hell before seeing improvement. My mindset was that the DP/DR was caused by the minocycline and if I stopped the medication, the DP that accompanied it would simultaneously disappear. Unfortunately this desired outcome was not achieved and the only thing that dissipated was the vertigo, the DP persisted.

 

My present day analysis of this is as follows: Upon stopping treatment and not seeing any improvement in my DP I began to create loads of anxiety for myself, asking the question of why hasn't this gone away, am I going to be like this forever etc etc. Undoubtedly this was very counterproductive in my recovery due to the fact that I am now 100% sure anxiety just prolonged my recovery process by making the DP worse. It was not until about a year and a half later, after talking to countless doctors, psychiatrist, physician, conducting an MRI and CAT scan (all inconclusive) that I began to look within for an answer.

 

The answer was so simple.... IT WAS ANXIETY. In terms of recovery, I personally feel eliminating anxiety in your life is the only real way to combat DP/DR and eliminate it completely. As my anxiety decreased, so did my DP/DR. Don't get me wrong, I am not saying it was easy to do this and that all of a sudden with a snap I eliminated my anxiety, it was an extremely difficult process even after I acknowledged anxiety as being the culprit. It all came down to keeping myself and my mind occupied, and, notably, not thinking about DP/DR (not as easy as it sounds). My main issue was every day when I woke up I would check to see if my DP was gone, as if somehow one morning I would miraculously snap back into reality. In reality, this is not going to happy for the majority of us and it is a long strenuous process. This only prolonged recovery as I was acknowledging the disorder every single morning right when I became conscious. You need to put it in the back of your mind. As the months went on I found myself thinking about it less and less as I got into the habit of keeping busy...and, as if by some sort of miracle, it began to fade. In present day I am (for the most part) anxiety free. By keeping busy, a strict healthy diet, regular exercise, I have successfully combated this seemingly impossible opponent. Therefore, I am also DP free. In terms of DR, it's a touchy subject. If I look for it chances are i'm going to find it. To put it more clearly, if I think about DR I begin to experience it to an extent (nowhere near as bad as its onset 2 years ago). It's hard if not impossible to erase that feeling and those experiences from your memory completely. But in present day, I rarely think about my DP/DR and anxiety. I went from thinking about it all day every day, to maybe 3 or 4 times a week, going days at a time DP/DR free and not even acknowledging it. Also now if I do have an onset of it, I know how to combat it by not stressing over it, focusing on it, or creating anxiety over it because I know it is going to go away when I forget about it. I did this without any prescription medication. DP/DR was the best/worst thing to ever happen to me. I don't take a single day for granted anymore. If i'm every having a bad day I just think back to how I felt 2 years ago and how far i've come and i'm just so appreciative. It does get better guys. Make life worth living.

 

I'm curious, has anyone else experienced an onset of DP or DR after the consumption of minocycline (Gives me shudders just to even type in the word minocycline). I talked to my doctor and psychiatrist about it and they all claimed it was not the medication that caused this onset, rather an underlying condition. Clearly this is a complete joke as I had no anxiety or really any issues prior to this, rather it was all caused by the medication. But then again they don't want to admit the medication could have been the cause as that would jeopardize the product and it's sales for the complete joke corporations paying doctors to hand out this garbage to innocent individuals when other alternatives are clearly a possibility (but that's another story). Let me know if minocycline affected you in this way and how you are doing now. 
 

Thank you for spending the time to read this. I felt it was important to reach out to individuals suffering from this as it was by far the worst/scariest 2 years of my life.



#2 xryan68

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Posted 05 December 2014 - 07:05 PM

Minocycline did this to me too. Two 100mg capsules a day for two months. I'm feeling a little better now, and it's been a month. That crap is evil man.

#3 *Dreamer*

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Posted 05 December 2014 - 10:39 PM

Glad you shared this, and very glad you are doing so much better.  Curious if either of you have told your doctor/dermatologist about this.  DP is a known side effect of minocycline.  Dermatologists MUST know this.  I have a research abstract below.  We have to TELL our doctors about these things.
And the anxiety angle is interesting.
For me, everything seemed to come in one bundle at one time as a child -- not sure which came first, depression, anxiety or DP/DR -- but all were present as far back as I can recall.  But note, a good number of people who have been on this med, go back to feeling completely normal ... (see article).  Some have to have some predisposition to have a more chronic reaction -- and that would be a greater ability to dissociate, and perhaps a greater tendency to be anxious.  Things fall on a spectrum and so many things factor in.

EDUCATE YOUR DOCTORS.  I've found it's about the only way I can get through to them!

Abstract.  This is old.  I should dig around for more current articles.  Also, you will find a number of other minocycline stories.  Plug the drug into the search engine here.

 

South Med J. 2004 Jan;97(1):70-3.
Medication-associated depersonalization symptoms: report of transient depersonalization symptoms induced by minocycline.
Cohen PR.

 

Source
University of Houston Health Center, Department of Dermatology, University of Texas-Houston Medical School, Houston, TX, USA. [email protected]

 

Abstract
Patients with depersonalization disorder experience episodes in which they have a feeling of detachment from themselves. Symptoms of depersonalization may occur in individuals who have other mental disorders, or who have various medical conditions, or who have taken certain medications.

 

A woman developed depersonalization symptoms after initiation of minocycline therapy. Her symptoms ceased after treatment was stopped and recurred when she restarted the drug.

 

Medications that have been associated with causing symptoms of depersonalization are presented and the postulated pathogenesis by which some of these drugs induced depersonalization symptoms is discussed. Medication-associated depersonalization symptoms typically resolve once the inducing drug has been withdrawn.

 

PMID:
14746427

 


Edited by *Dreamer*, 05 December 2014 - 10:50 PM.


#4 *Dreamer*

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Posted 05 December 2014 - 10:49 PM

Also, I just looked at all of the potential side effects of the drug.  There are MANY.  However I didn't see DP mentioned.  It may be a more "rare" side effect, but over the years I have heard quite a few individuals post about minocycline causing their DP onset.  Also, parents have come on this board asking for help.  I have received emails on my website about this.

 

Not a huge amount of people.  But my guess is few people report the symptoms as they are afraid or ashamed to or "think they are going crazy."  I'd like to go to every dermatologist's office and hand out this journal abstract.

OH, EDIT again.  I know of people who have gotten past DP/DR.  Once it is gone some of these people say they can't even remember what it felt like.  A few others have said, "It's gone.  I'm not afraid of it."  They may still have anxiety and depression (I know 2 such people -- in their 60s).  One says he might have a dream once a year where there is a touch of DR, but it is gone when he wakes up.  He doesn't freak out about it at all.  Another -- he has depression.  The DP/DR are not as much of a concern as his depression which can make him feel suicidal.

 

Chicken/egg ... a combination.  Everyone is unique.


Edited by *Dreamer*, 05 December 2014 - 10:53 PM.


#5 xryan68

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Posted 07 December 2014 - 06:02 PM

I checked the side effects of minocycline in the prescription package it came in. There was really only two side effects that got me bad while I was first taking it. That would be the tinnitus and the vertigo. I used to complain at work that I would get really dizzy all of the sudden, but I usually ignored the tinnitus. It wasn't until about two months into taking the drug that I started feeling the DP. And it was mad DP. Nowhere on the list of side effects, did it mention anything about it. Through googleing symptoms I found that minocycline can definitely cause it, and it's happened to many other people. I thought I was for sure going insane. I would have thoughts all day that I had deteriorating mental state. I thought I was gonna develop schizophrenia and every time I would hear people talking outside, I had to check to see if it really was people walking by and not me just hearing things. I would obsessively google my symptoms and I thought for sure this was it, I'm done for. I've come a long way from there. I stopped taking the drug about a month ago, and have abstained from weed and alcohol. (Not to say that my ingestion of LSD resulting in a traumatic trip could have caused this too). I can feel the symptoms lifting off of me. Instead of an all day every day thing, it's become more like a couple of hours in the day I'll feel it pretty bad. I'm learning not to fear it too, which is fantastic. It's still kind of hard to laugh at things like I used to, and it's been sort of difficult articulating my words in speech as before my onset, I was a great talker and could talk at great lengths about any given topic. I know that I'm not 100% Recovered, but I know for certain I'm getting there. And it feels great. I wish I knew how bad minocycline could be. I'd rather take a face that looks like a pizza than deal with this state of mind. All dermatologists should know what this drug can do. It should at least be listed on the side effects even if it is rare. It's definitely the worst one of them all. Peace and love to anyone going through this, but it's great to know that we're not alone. Just keep truckin'. "Sometimes the lights all shining on me, other times I can barely see, lately it's occurred to me, what a long strange trip it's been"

#6 Guest_Jeff_*

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Posted 07 December 2014 - 09:12 PM

I have taken antibiotics often and I notice whenever I'm in them I feel more drd, depending on the drug. Doxycycline, a sister of minocycline gives me pretty ramped up dr, however my worst experience is with cipro, I I'll omly take that if it's the only thing that will work.

#7 *Dreamer*

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Posted 08 December 2014 - 09:03 PM

Before my DP/DR hit HARD (around middle school) - it was preceded by dizzy spells that came out of the blue.  I also have vertigo.  (The dizzy spells passed with time as the DP/DR got worse).  Vertigo is "of undetermined origin" as an adult.  I also, under extreme stress have experienced terrible tinnitus. Thought I had lost my hearing in one ear.  But it passed after the stress passed.

 

Anxiety?  So many things going on here.  Overstimulation .. no clue.


I think this is a way for research to approach DP/DR from 2 separate specialties.

1.  Dermatology

2.  Ear, Nose and Throat specialists

 

We know that minocycline can bring on DP/DR in mentally healthy individuals

There are also studies that individuals with vestibular disorders -- vertigo, tinnitus, etc. -- happen to have more than average numbers of patients with DP/DR.

 

I realize this is not the CAUSE of DP/DR in every person.  And there are many reasons for onset.  However, if someone examined this ... why minocycline induces DP/DR, perhaps they could work on WHY -- understand the mechanism.

I think I have found a very simple focus.

I have been flailing around forever.  If Dr. Sierra and only a few others are researching from the neurological POV, these other specialties could contribute.  It seems a mail blast to specialists with compiled info, stories, etc. could help.

A LOT of work.  I have to think about this over the holidays.  A manageable project for 2015 maybe?
Just when I'm about to throw in the towel, I get another hare-brained idea, LOL.  It's worth a look.

 

I want to approach this thoughtfully and professionally.  But this is beyond coincidence.  As with all disorders, you hit them from all sides and sometimes luck out.

ALSO, SOME SORT OF EMAIL PETITION -- to the drug company that makes Minocycline -- add that to the side-effect list.  DOES ANYONE KNOW HOW TO SET THOSE PETITIONS UP?  Another idea.  I'll try anything.


Edited by *Dreamer*, 08 December 2014 - 09:14 PM.


#8 *Dreamer*

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Posted 08 December 2014 - 09:06 PM

J Nerv Ment Dis. 2013 Jul;201(7):629-35. doi: 10.1097/NMD.0b013e3182982995.
Depersonalization experiences are strongly associated with dizziness and vertigo symptoms leading to increased health care consumption in the German general population.
Tschan R, Wiltink J, Adler J, Beutel ME, Michal M.

Source
Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Mainz, Mainz, Germany.

Abstract
This study investigated the association of depersonalization (DP) experiences with dizziness and its impact on subjective impairment and health care use.

Trained interviewers surveyed a representative sample of 1287 persons using standardized self-rating questionnaires on dizziness, DP, and mental distress. Symptoms of dizziness were reported by 15.8% (n = 201). Thereof, 62.7% endorsed at least one symptom of DP, 40% reported impairment by symptoms of DP, and 8.5% reported clinically significant DP.

Regression analyses identified DP as a significant, independent predictor for dizziness symptom severity, health care use, and impairment by dizziness. With regard to the Vertigo Symptom Scale, DP explained 34.1% (p < 0.001) of the variance for severity of symptoms of dysfunction in the balance system. In conclusion, symptoms of DP, highly prevalent in patients complaining of dizziness and vertigo, were independently associated with increased impairment and health care use.

The presence of DP symptoms should actively be explored in patients complaining of dizziness.

PMID:
23817161
[PubMed - indexed for MEDLINE]

 

It figures this group is in Germany.  But there IS awareness.  There are a lot of pieces of the puzzle to pull together.



#9 *Dreamer*

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Posted 08 December 2014 - 09:10 PM

"Sometimes the lights all shining on me, other times I can barely see, lately it's occurred to me, what a long strange trip it's been"

 

My life in a nutshell.



#10 *Dreamer*

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Posted 08 December 2014 - 09:27 PM

Manufacturers to contact.  If anyone wants to explain your story to these manufacturers it can't help.  It is generic now.  I'd say send snail mail and email.  Say DP/DR should be listed as a side effect and to explain this to ... perhaps young people in particular? ... who are taking this.  This antibiotic is used for a lot of other things.

Got this off of drugs.com

 

1.-Ranbaxy Pharmaceuticals Inc.,
600 College Road East, Suite 2100, Princeton, NJ 08540
Contact Details
Phone: (609) 720-9200
Website: www.ranbaxyusa.com/

2.-Teva Pharmaceuticals ,
1090 Horsham Rd. P.O.B. 1090, North Wales, PA 19454
Contact Details
Phone: (888) 838-2872
Website:www.tevausa.com

3.-Medicis Pharmaceutical Corporation,
7720 North Dobson Road 
Scottsdale, AZ 85256
Contact Details
Phone: (602) 808-8800
Website:www.medicis.com

4.-Watson Pharmaceuticals, Inc. ,
311 Bonnie Circle 
Corona, California 92880
Contact Details
Phone: (951) 493-5300 
Website: www.watson.com/
Minocycline is a generic medication  It is also available under a number of brand names, such as:
Arestin


Dynacin


Minocin


Solodyn


Ximino

 



#11 dwy904

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Posted 12 April 2016 - 12:28 PM

Before my DP/DR hit HARD (around middle school) - it was preceded by dizzy spells that came out of the blue.  I also have vertigo.  (The dizzy spells passed with time as the DP/DR got worse).  Vertigo is "of undetermined origin" as an adult.  I also, under extreme stress have experienced terrible tinnitus. Thought I had lost my hearing in one ear.  But it passed after the stress passed.

 

Anxiety?  So many things going on here.  Overstimulation .. no clue.


I think this is a way for research to approach DP/DR from 2 separate specialties.

1.  Dermatology

2.  Ear, Nose and Throat specialists

 

We know that minocycline can bring on DP/DR in mentally healthy individuals

There are also studies that individuals with vestibular disorders -- vertigo, tinnitus, etc. -- happen to have more than average numbers of patients with DP/DR.

 

I realize this is not the CAUSE of DP/DR in every person.  And there are many reasons for onset.  However, if someone examined this ... why minocycline induces DP/DR, perhaps they could work on WHY -- understand the mechanism.

I think I have found a very simple focus.

I have been flailing around forever.  If Dr. Sierra and only a few others are researching from the neurological POV, these other specialties could contribute.  It seems a mail blast to specialists with compiled info, stories, etc. could help.

A LOT of work.  I have to think about this over the holidays.  A manageable project for 2015 maybe?
Just when I'm about to throw in the towel, I get another hare-brained idea, LOL.  It's worth a look.

 

I want to approach this thoughtfully and professionally.  But this is beyond coincidence.  As with all disorders, you hit them from all sides and sometimes luck out.

ALSO, SOME SORT OF EMAIL PETITION -- to the drug company that makes Minocycline -- add that to the side-effect list.  DOES ANYONE KNOW HOW TO SET THOSE PETITIONS UP?  Another idea.  I'll try anything.

 

did you ringing go away ?

I had minocycline for 1 month and 10 days (100mg twice a day)  and I felt the ringing in my ear then I stopped right away. The ringing was like motor sound in the beginning.  It reduces a lot over these four weeks but I can still hear a little bit now. During the fourth week the sound was like 'si si si si'. Its been four week since I stopped the medicine. Its been the 5th week since I stopped the med, the sound seems a little bit louder than the 4th week. I am worried.

I am so worried if it wont go away. I am just 22 years old  T_T....



#12 dwy904

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Posted 12 April 2016 - 06:50 PM

I checked the side effects of minocycline in the prescription package it came in. There was really only two side effects that got me bad while I was first taking it. That would be the tinnitus and the vertigo. I used to complain at work that I would get really dizzy all of the sudden, but I usually ignored the tinnitus. It wasn't until about two months into taking the drug that I started feeling the DP. And it was mad DP. Nowhere on the list of side effects, did it mention anything about it. Through googleing symptoms I found that minocycline can definitely cause it, and it's happened to many other people. I thought I was for sure going insane. I would have thoughts all day that I had deteriorating mental state. I thought I was gonna develop schizophrenia and every time I would hear people talking outside, I had to check to see if it really was people walking by and not me just hearing things. I would obsessively google my symptoms and I thought for sure this was it, I'm done for. I've come a long way from there. I stopped taking the drug about a month ago, and have abstained from weed and alcohol. (Not to say that my ingestion of LSD resulting in a traumatic trip could have caused this too). I can feel the symptoms lifting off of me. Instead of an all day every day thing, it's become more like a couple of hours in the day I'll feel it pretty bad. I'm learning not to fear it too, which is fantastic. It's still kind of hard to laugh at things like I used to, and it's been sort of difficult articulating my words in speech as before my onset, I was a great talker and could talk at great lengths about any given topic. I know that I'm not 100% Recovered, but I know for certain I'm getting there. And it feels great. I wish I knew how bad minocycline could be. I'd rather take a face that looks like a pizza than deal with this state of mind. All dermatologists should know what this drug can do. It should at least be listed on the side effects even if it is rare. It's definitely the worst one of them all. Peace and love to anyone going through this, but it's great to know that we're not alone. Just keep truckin'. "Sometimes the lights all shining on me, other times I can barely see, lately it's occurred to me, what a long strange trip it's been"

 

did you ringing go away ?

I had minocycline for 1 month and 10 days (100mg twice a day)  and I felt the ringing in my ear then I stopped right away. The ringing was like motor sound in the beginning.  It reduces a lot over these four weeks but I can still hear a little bit now. During the fourth week the sound was like 'si si si si'. Its been four week since I stopped the medicine. Its been the 5th week since I stopped the med, the sound seems a little bit louder than the 4th week. I am worried.

I am so worried if it wont go away. I am just 22 years old  T_T....






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