Kuda1988: 10 year of various drugs - finally learned about kindling - to late ?

[Kuda1988]

Hi I’m mark.
 

I spent an hour trying to make my signature , but it wouldn’t allow it because it was to long. Tried cutting it down significantly, still to long , gave up. Basically I’ve been on a million drugs on and off , and didn’t ween off any of the em correctly except lamictal and seroquil. I can make a extremely generalized timeline . Starting with cymbalta 16-17 years ago.

 

cynbalta -2007 1 year 2012 -1 month

wellbutrin-2007- a few days 

xanax-2012- 1mg, recreationally 10-15 doses

klonopin-2013 1year .25-1mg

lexapro-1-2 months 10mg

topamax-2weeks small dose

lamictal— 2015 7 years- doses(25-400mg)

Seroquil- 2015 5 years -15-100mg

ketamine-2019 -10 iv treatments 

gabapentin-2020- 300mg- 2 months 

litrhium-2020 1200mg-1 month 

ambien-2020 5-10 mg 3 months 

Propalanol-2023 10mg -2 weeks 

 

 

I’ve had several med trials for past 10 years trying to address symptoms that came out of nowwhere in 2013, which I now realize we’re most likely issues from taking cymbalta at an early age , not weening off then going into more rec drug use and Xanax .

 

past ten years of my life were terrible , Constant doctors , trying meds , psych ward visits from bad reactions , not knowing what was wrong , more meds  , even was convinced I had lymw and did antibiotic protocols , hyperbaric chamber , etc. also multiple shoulder surgeries from bad shoulders , one of which was a botch job and caused terrible nerve damage furthering my issues .

started realizing psych drugs were the problem in late 2021. Got off everything for about a year 

 

I got hit with a severe life threatening bout of insomnia in 2022 June , and after being off of drugs for nearly a year , had to resort back to trying things  , and things spiraled quickly . While I always have had the hypersensitive nervous system symptom, i I started developing this at a new level . super sensitive to sounds ( even not loud soundslike  fridge clicking on, car door in distance , anything etc). Can’t watch most movies emotions trigger symptoms . Constant tinnitus . Can’t exercise , sex release  , can’t go to the store without flare .) nighttime adrenal surges / jolting .

 

even then I STILL was seeing psych and trying meds because I was not familiar with kindling . How would I know ? I was member of benzo buddies and knew something was going on drug related but was suffering and didn’t know how else to try and fix it . Then I finally learned of kindling , and found this site . I’ve been off everything for 6-7 weeks .

 

I see people with exact symptom profiles and I see a lot of people that don’t seem to show improvement with the hyper arousal especially from sounds .

ive already suffered most of my life , and it’s been  ten years and I’m not even close to better , in fact way worse.

 I guess what I need is a success story, for people with similar countless (to long to list) drug trials , that had the hyper arousal from sounds , lights , emotions , etc and eventually showed improvement . 
 

I don’t want to break any rules by saying how I truly feel , but this basically isn’t doable . I saw one lady that said she has the auditory arousal issues seven years later .. what?????? No.. can’t, sorry, I’ve already been in hell for 10 plus years .

 

any success stories or other who had this issue and showed improvement WOULD help. I can’t really find any though .

 

 

thank you for allowing me in the group and for reading 

[getofflex]

Hello, and welcome to SA.  We are a volunteer-run community of people who have been or are getting off of psychiatric drugs.  I'm sorry for all of the pain you have been through.  Thank you for working so hard to give us your drug history.  

 

I went ahead and copied your drug history into your signature.  Can you please give us more specifics of drugs and supplements for just the past 1.5 to 2 years?  Also, what drugs are you currently on?  It would be especially helpful to have the details of your drugs in a concise vertical list (no symptoms), only specific dates, include the day (as best you can say for example early March if you don't recall the day), drug names, and dosages of each medication decrease or increase. Here is an example: 

 

March 12, ’22: Lexapro 5 mg, Xanax 0.5 mg, Trazodone 50 mg

March 29, ’22: Lexapro 4 mg, Xanax 0.5 mg, Trazodone 50 mg

April 17, ’22:  Lexapro 3.8 mg, Xanax 0.5 mg, Trazodone 50 mg

May 19, ’22:  Lexapro 3.8 mg, Xanax 0.5 mg, Trazodone 25 mg

 

Please read the link below for instructions.  This will allow us to give you the best guidance.  

 

How to List Your Drug History in Your Signature

 

Here is some important information about how these drugs actually work.  This explains why we get symptoms from going off of these medications, and why it's so important to taper slowly and carefully, and be very cautious about changing our doses: 

 

How Psychiatric Drugs Remodel Your Brain

 

 

This helps you understand what withdrawal syndrome is: 

 

Video on Recovery from Psych Drugs

 

Windows and Waves Pattern of Stabilization

 

 

Here is a link with checklists of common WD symptoms: 

 

Dr Joseph Glenmullen Withdrawal Symptom Checklists

 

 

Here are some techniques to cope with symptoms: 

 

Non Drug Ways to Cope with Withdrawal Symptoms

 

Stability is really important when we are tapering off psych meds.  Please read the link about stability:

 

Keep It Simple, Slow, and Stable

 

 

We don't suggest many supplements, but 2 that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how it affects you. 

Magnesium

Omega 3 Fish Oil

 

And, here is information about kindling.  

 

Hypersensitivity and Kindling

 

Post WD Nervous System Hypersensitivity, Hyper Reactivity, Kindling

 

This is a link to search results for - 

 

Success Stories Involving Kindling

 

 

Edited February 9, 2023 by getofflex

[Kuda1988]

Past 2 years is difficult to list exactly . Lots and lots of daily med changes / alterations/ stoppages  . Was hit with insomnia spell in June 2022 and was trying new things every night , various doses, some mixes  , then discontinue and trying something else , etc. Things got out of hand . Wasnt sleeping / losing job was desperate . definitely no tapers mostly reintroduced at lowest dose. Always tapered lamictal by the mainstream book though .

 

Months later ,consulted with the only psych who I felt had some understanding of what was going on with me , he always mentioned I have overactive glutamate / hypersensitivity/ increased nervous system signaling , and he sold me on taking lithium again ( tried it briefly previously in 2020 and thought it may have helped some things )

 

But here is best I can do summary wise 

 

Last 2 years 

 

December 2020- august 2021 no rx drugs

Marijuana and kratom near daily use

 

August 2021-bee venom therapy for shoulder pain led to adrenal/ cns  crash  -lamictal 25mg reintroduced

 

June 1st 2022-(Crazy insomnia spell starts) gabapentin 100mg -300 mg reintroduced -nighttime 

June 10th 2022- ambien 1-3mg reintroduced -nighttime

June 15th 2022- benedryl normal

Dose reintroduced -nighttime

Bad reaction from mixing benedryl / gabapentin / ambien / kratom. This is when adrenal surges / jolting started . Discontinued benedryl. Discontinued combinations .
 

The next month or so was a lot of trying to sleep without anything , but taking gabapentin. 100-300mg and 1-3 mg ambien if I got desperate . Also reintroduced seroquil some nights . So some nights seroquil various dose , some nights gabapentin , some night gabapentin and ambien , some nights nothing . Still on lamictal 25

July 1st 2022- seroquil 25-100 mg reintroduced - 

July 28 2022- discontinued seroquil, ambien

 

August 1 2022- start propalanol 10mg 3 times daily / gabapentin 100 mg 3 times daily .lamictal 25 3x per day

August 14 2022 discontinued propalaol, discontinued gabapentin

September 1 2022- reinstate lithium 900mg/ start Valproic acid ( low dose forget exactly) discontinued lamictal 

September 10 2022,- discontinued lithium,Valproic acid, reinstate lamictal 25mg, 

September 12 2022- reinstate gabapentin 100mg-200mg

November 25 2022- discontinue gabapentin , discontinue lamictal 

December 10 2022- reinstate lithium 900mg. Bad reaction . Discontinued 

December 12 2022- reinstate lithium 450mg

December 16 2022- lithium inc to 650 mg

December 24 2022- lithium inc to 900mg bad reaction

Discontinued lithium 

 

Clean since then once I learned about kindling  , no supplements either . Thank you for the information on kindling / hypersensitivity .

 

[getofflex]

Can you please condense the information, and put in in this format, and place it in your signature box?    Here is an example: 

On 2/9/2023 at 6:43 AM, getofflex said:

March 12, ’22: Lexapro 5 mg, Xanax 0.5 mg, Trazodone 50 mg

March 29, ’22: Lexapro 4 mg, Xanax 0.5 mg, Trazodone 50 mg

April 17, ’22:  Lexapro 3.8 mg, Xanax 0.5 mg, Trazodone 50 mg

May 19, ’22:  Lexapro 3.8 mg, Xanax 0.5 mg, Trazodone 25 mg

 Thank you.  One of us will get back to you with suggestions.  

Edited February 10, 2023 by getofflex

[Kuda1988]

Will do my best .  What about when the doses and meds changed everyday for weeks / months ?

 

 

 

Dec 1 ,21 -aug 1, 2021 no rx drugs

Marijuana and kratom near daily use

Aug 1, 21-bee venom therapy for shoulder pain led to adrenal/ cns  crash  -lamictal 25mg 

June 1st 22-(Crazy insomnia spell starts) gabapentin 100mg -300 mg lamictal 25

June 10th 2022- gabapentin 200mg, benedryl,lamictal 25

June 15th 2022- ambien 2mg,gabapentin 200mg,benedryl, lamictal 25mg

Bad reaction from mixing benedryl / gabapentin / ambien / kratom. This is when adrenal surges / jolting started. The next month a lot dose changes med changes daily -taking gabapentin. 100-300mg and 1-3 mg ambien . Seroquil 10-100mg. some nights seroquil various dose , some nights gabapentin , some night gabapentin and ambien , some nights nothing . lamictal 50mg

July 15, 22- lamictal 100mg

July 28 2022-lamictal 50

August 1 2022-  propalanol 30mg gabapentin 300mg lamictal 100mg

August 14 2022- lamictal 50

September 1 2022- lithium 900mg/ valproic acid 

September 10 2022,- lamictal 25mg, 

September 12 2022- gabapentin 200mg, lamictal 25mg

November 25 2022- nothing  

December 10 2022- lithium 900mg. 
december 11,2022-nothing 

December 12 2022- lithium 450mg

December 16 2022- lithium650 mg

December 24 2022- lithium 900mg

Bad reaction clean since 

 

 

 

 

 

will try this. It it always says to many lines used , even tried with the current amount in there now and wouldn’t let me do it . But admin was able 

 

 

edit: still won’t let me add it

[Altostrata]

Hello, @Kuda1988

 

What exactly are you taking now, at what times o'clock and dosages? And what is your tapering question?

 

Please do not make more drug changes while we're discussing this.

[Kuda1988]

I have been off of everything since lithium attempt  , December 25 2022.. approaching  2 months . I was never aware of kindling but now I am. 

I don’t have a question on tapering . I asked about hypersensitivity/ tinnitus/ auditory and light  sensitivity if there are any success stories of it going away. Was saying a success story of someone with similar background of countless med trials  as me would help, but I didn’t see anyone who claims they are better from auditory hypersensitivity /insomnia / tinnitus / jolting  one lady said 7 years and she isn’t better. 

[Altostrata]

When did the auditory hypersensitivity /insomnia / tinnitus / jolting start?

 

Do you drink alcohol, have you taken antibiotics in the last 2 years, or had covid?

 

Can you edit your signature and just put in the drug changes you've made in the last 6 months?

[Kuda1988]

The general hypersensitivity has been going for 10 years . My main symptoms (2013) at first we’re head pressure / stiff neck / headaches / hyper sensitivity to substances / drugs . Moderate insomnia began when I started getting RLS after a lexapro trial in 2015. Insomnia got unbelievably severe in March 2020- prob from coming off of seroquil / maybe from doing ketamine / who knows . I got through it with gabapentin / ambien which I discontinued months after.

 

June 2022, I got hit with another insane insomia spell ( along with my other classic symptoms head pressure / migraines / sensitivity to stress / emotions and panicked and went back to sleep drugs . ( I was off everything at this time except lamictal 25). Couldnt sleep for weeks / lost my job and at that point i was desperate .

The real bad symptoms started one night around this time ( June / July 2022)  , probably from mixing to many thjngs throughout the night .. gabapentin / ambien/ benedryl / kratom ). This is when I started getting auditory sensitivities / light sensitivities/ the nighttime jolting and adrenal surges  / and overall super intensification of symptoms .  I can’t even think of a cool scene in a movie whether it’s an emotional or touching scene / scary scene / cool action .. without flarimg symptoms.
 

way to sensitive to drink alcohol . I did for a month during winter 2020, when I was having a good spell . That was last time . And before that it was 2013 was the last time..( that was one of my intitial complaints.. all of a sudden I couldn’t tolerate alcohol / intensified symptoms ..

 

never had covid symptoms 

 

last abx were July 2019 following shoulder surgery 
 

I don’t understand why I’m having trouble with the signature . I even (just to test it )  omitted some text from the current one ( an admin put it there ) and it said “ taking up to many lines “ . 
I’ll keep trying though I understand a good signature is very important . 
Also, an accurate signature is super challenging for past year considering the span of months where I was trying new  stuff / doses every night .

[Altostrata]

15 hours ago, Kuda1988 said:

The real bad symptoms started one night around this time ( June / July 2022)  , probably from mixing to many thjngs throughout the night .. gabapentin / ambien/ benedryl / kratom ).

 

This is probably key to the condition of your nervous system.

 

What we see here is that a history of going on and off psychotropic drugs -- psychiatric, recreational, prescribed, non-prescribed, legal, illegal, gray market, alcohol, adaptogenics, etc. -- causes nervous systems to be hypersensitive to other drugs and sometimes even foods and supplements. Your symptoms are those of nervous system hypersensitivity.

 

If people don't interfere with the nervous system repairing itself, recovery is very gradual, over many months or years. See 

 

The Windows and Waves Pattern of Stabilization

 

The importance of recognizing you're feeling good

 

You have been going on and off psychotropics since 2007. The psychiatric drugs you've taken intermittently are only part of this.

 

I don't think we have any answers for you, and definitely not any drug recommendations. If I were you, I'd stop taking any psychotropics or drinking any alcohol for a good long time, maybe years, to let your nervous system settle down.

 

Develop a discipline of healthy habits: Regular sleep schedule, at least 1/2 hour of gentle exercise every day, eat fresh fruits and vegetables, be patient and take care of yourself. 

 

Many people find fish oil and magnesium supplements helpful, see

 

https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

 

https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

You might try a little bit of one at a time to see how it affects you. Please let us know how you’re doing.

[Kuda1988]

Thank you very much for the time spent and responses. 
Exercise is a huge trigger since this spiral which is a huge problem. Maybe just a short walk I can handle . 
been a big magnesium user this whole duration ( threonate / citrate / glycinate ) , I may experiment with not taking literally anything .. though I’m 7 weeks off literal everything and no better / perhaps worse. Maybe this is the “5 steps back “ part .

 

My diet is immaculate, I eat an organic lions mane mushroom salad all home cultivated and organic ground beef. And an organic banana / strawberry / coconut milk blend if still hungry in evening .  I try to stay in ketosis , there is something with this for gaba glutamate modulation I’ve read ? 🤷‍♂️
 

If any particular success stories that parallels my situation comes to mind  (34 year old male, countless drug trials , decade plus of suffering ( most of my life really , zero hope ) it would help because I basically am 100% certain I’m f*cked. 
 

again, thank you for all your work altostrata with this.. if only I had found this site / you sooner . 😕

[Altostrata]

On 2/8/2023 at 8:29 AM, Kuda1988 said:

I’ve been off everything for 6-7 weeks .

 

You've only been off psychoactive drugs for 6-7 weeks. Recovery from a long history of going on and off drugs might take a lot longer than that, counted in months, at least, rather than weeks.

 

How has your symptom pattern changed in the last 2 weeks?

[Kuda1988]

It has not changed really in 7weeks. Just shifts in severity . More severe with circumstantial events like .. a friend coming by to talk ( always flares me ) or a neighbor kid pounding on my door startling me playing ding dong ditch ,dad arguing with me high intensity over politics , etc.

 

 

I had gone stretches of 10-12 months off everything pharma .. but I guess still would use kratom / marijuana so that doesn’t count?

 

I understand it will take longer . Just kinda over it , one day of this is to much , it’s hard to visualize my road to recovery starting NOW rather than 10 years already passed of suffering , of which seem to have done nothing except make me worse .. from poor clinician / family advice .

 

[Altostrata]

Sorry you're going through this, but we cannot make it shorter for you. It's hard, but you'll need to learn how to surf it.

[getofflex]

On 2/10/2023 at 5:16 PM, Kuda1988 said:

edit: still won’t let me add it

It's taken care of. 

 

23 hours ago, Kuda1988 said:

I had gone stretches of 10-12 months off everything pharma .. but I guess still would use kratom / marijuana so that doesn’t count?

That stuff counts too.  I would stay away from this.  I would stay away from any and every substance that remotely affects your nervous system.  The only way we know to allow the nervous system to heal, is to completely stay off all things that affect the nervous system, and learn non drug coping techniques, and take very good care of yourself.  The keys to healing from this dilemma are time, patience, and staying off psychiatric/psychotropic drugs and substances.  

 

Increased Sensitivity to Light, Noise, Sounds, Exercise

 

Withdrawal Insomnia, With Tips to Help Sleep

 

Migraines, Headaches and Head Pressure

[Kuda1988]

Yes I concur

I think subconsciously I’ve always known this, but the problem with reintroduction always happens around a severe life altering  insomnia spell  I get desperate and try everything . But now I know it’s for sure Gonna be a set back further resorting to anything no matter how severe insomnia .

[Altostrata]

I changed the font in your signature to small. It's still pretty long.

[Kuda1988]

Thank you. 
yes long

[Altostrata]

Perhaps you might pursue non-drug healing methods rather than drug solutions to whatever is troubling you.

[Kuda1988]

Hoping that’s not condescension .. I’m sure it’s not .. but ya obviously I’ve tried tons of things , 10-11 years is a long time, I didn’t JUST try pharma  . I’ve tried plethora of non drug approaches.

heavy metals cutler protocol/ hyperbaric therapy / diets / herbal remedies / ayurveda / bvt / cBt and hypnosis etc
This whole decade has been me trying to get some sort of a life back

what I didnt have was knowledge of what is going on pharmacologically / neurologically /kindling,  in my brain, when I would revert back to trying psych pharma drugs after other approaches didnt work , and often treatment methods were going on simultaneously. 
I could Only speculate to what was wrong with me , and any hypothesis of it being pharma related was quickly shot down by highly regarded physicians , intelligent people ..in this circle . I stood no chance .
Now I know ,regardless of what they say ,  unfortunately it’s come very very late to me . I don’t see myself taking pharma ever again . And it seems the only road to recovery is refraining from any substance, and being as kind to my CNS as possibly  .... right ?

[Kuda1988]

Do you have suggestions for non drug healing methods ? I thought on here that’s generally not accepted , that the only path to healing is time , being healthy , tapering / getting off all drugs ?

[Altostrata]

32 minutes ago, Kuda1988 said:

And it seems the only road to recovery is refraining from any substance, and being as kind to my CNS as possibly  .... right ?

 

It's the only road we know of here, and it seems appropriate for you.

[getofflex]

On 2/13/2023 at 4:11 PM, Kuda1988 said:

Do you have suggestions for non drug healing methods ? I thought on here that’s generally not accepted , that the only path to healing is time , being healthy , tapering / getting off all drugs ?

 

No, but we have non drug coping methods for dealing with the symptoms..  We believe that our nervous system can and will heal itself, given proper natural self care, and loads of time and patience.  The success stories attest to that.  

 

Non Drug Ways to Cope with Withdrawal Symptoms

[Kuda1988]

Ya I thought so , wasnt sure why alto mentioned that .^^^

[Dee12h]

Did you try any of Amit’s supplements? How are feeling now?

[Kuda1988]

Yes , I don’t noticed any difference in fact I think they flare me if anything . I’m not well

[UnfoldingSky]

Hello, I just read your thread.  Just popping in to say I was extremely sensitive to noise and lights, and I did recover. I was given thirteen different kinds of pills, and also had kindling.   

 

For sleep I would recommend trying acupressure points. I don't think there is a risk to them at all, they just won't work if it's not meant to be.  Least risky means to try.  I find them helpful.  There are a bunch on the hand/wrist area.  You just press one for thirty seconds, and if it's going to work you should get a wave of relaxation.  If you wake up early still just do it again. 

 

 

[Kuda1988]

How long did it take ? How old were you when you started the drugs? What were your other symptoms ? I will look deeper into the pressure points for sleep 

[UnfoldingSky]

On 3/6/2024 at 11:50 AM, Kuda1988 said:

How long did it take ? How old were you when you started the drugs? What were your other symptoms ? I will look deeper into the pressure points for sleep 

 

I was in my early twenties when I started the drugs.  It took about three years to recover from the light and sound sensitivity to a degree that life was tolerable.  I still had some other symptoms though after this.

 

Symptom list was very long, among the most problematic complaints were akathisia, tardive dyskinesia, amnesia, light, sound and stress sensitivity, obsessive thinking, adrenaline rushes, extreme negative thinking.  Most of these cleared up completely though I retain some stress sensitivity and some memory loss. But I've improved a LOT from where I was.  Amnesia for past recollection was almost total, I went years not remembering almost anything about myself/my past. It was so bad that at times I even forgot how old I was.  I have a uni. education, studied at the top university in my country too.  I had near photographic recall for some subjects before I was harmed by psych drugs.  So at its worst the memory loss was pretty dramatic.