Survivor1: sleeping after trazodone (and benzo)

[Spideygsm]

2 hours ago, Survivor1 said:

 

but when I dropped Seroquel 18 months ago, I developed the worst anxiety and depression ever.  Did not think I would pull through, but reinstatement did the trick and I was  relatively fine after that.  

 

Not to make light of your situation, but do you think that many of your psychiatric issues could be caused by the drugs/high doses/combos you have been on and you are actually not bipolar?

I've had mental issues my entire life. I was put on Ritilin at 8 years old because I was so bad. All of my conditions existed prior to taking any meds. I don't know for a fact, but I think the worst medications out there for causing extreme anxiety and depression as well as INSOMNIA after discontinuation whether or not a person had these issues before taking the medication are all of the antipsychotic medicines. I'll use your situation. You had PPD many years ago but no other mental health issues. However now that you've been on the Seroquel for awhile, when you discontinue using it, you get depressed, anxiety, and depression. These are all just a few of the withdrawal symptoms that can develop after discontinuation of the antipsychotic whether or not you had these issues before taking one. Some get these issues during withdrawal, some get them later on. The WD symptoms can come and go for years (I've read where somebody still had issues 2 years off Zyprexa). I think it all depends on each person how strong and how long they last. In my case I've always had the Dep, Anx, and Insom before antipsychotic meds. I got some relief for these as well as other issues while on the antipsychotics. In the case of getting off Zyprexa, the intensity of these medications got extreme while withdrawing from the med. However, after about 9 weeks to present, all of the intense withdrawals have go back to what they were pre-Zyprexa. Only during the withdrawal did I experience anything new and the new symptoms are now gone.

 

I spent about 5 months of intense withdrawals and was ready to give up everyday. I was ready to go to the mental hospital.  I would have done anything. My Doctor told me to try Valium and Ambien. If they didn't work (which they didn't), there was nothing that could be done and I'd have to just ride it out so I did. I couldn't go back onto Zyprexa because of the side effects. Based on my experience (which is obviously different than others), I think that if somebody starts the process of tapering and can just stick it out long enough, eventually your body recovers. For me, it was literally overnight. One day I woke up at 1 am and the anxiety and all the other issues except the insomnia were nearly gone. The anxiety and insomnia were there but no where near as intense. I can live with it. I have before.

 

I'm gonna hold at my first drop of Trazodone and see how it goes. If it's going well, I'll taper. I just want to get Trazodone (I've been on Traz 5 weeks) off my hit list of meds and live on as few meds as possible.

 

I wish you all the luck. You've lived many years of hell. Be mentally strong and force yourself to exercise. Naturally release those endorphins and get your body tired.

[Carmie]

Hi survivor, 

 

Hope tomorrow is a better day for you. 

 

Just read some of your thread. Wow! You cold turkeyed off Seroquel. That must have really knocked you around. Glad the small reinstatement helped a little. Jumping off 0.5mg in February was quite a big step too.

 

I’ve been tapering off it for many years. I couldn’t jump off from 0.5mg as I’m so sensitive to every drop, that would be way too high for me.

 

Hope all goes well with tapering off your other meds and you have some good days💚

 

 

 

 

[Survivor1]

37 minutes ago, Spideygsm said:

I'm gonna hold at my first drop of Trazodone and see how it goes. If it's going well, I'll taper. I just want to get Trazodone (I've been on Traz 5 weeks) off my hit list of meds and live on as few meds as possible.

 

I completely understand.  Just listen to your body.  You have my support whatever you decide. Cheers!

[Survivor1]

3 minutes ago, Carmie said:

Hi survivor, 

 

Hope tomorrow is a better day for you. 

 

Just read some of your thread. Wow! You cold turkeyed off Seroquel. That must have really knocked you around. Glad the small reinstatement helped a little. Jumping off 0.5mg in February was quite a big step too.

 

I’ve been tapering off it for many years. I couldn’t jump off from 0.5mg as I’m so sensitive to every drop, that would be way too high for me.

 

Hope all goes well with tapering off your other meds and you have some good days💚

 

 

 

 

 

Hi Carmie, thanks for stopping by.  That cold turkey off seroquel was unintentional.  I was taking it on an as-needed basis (dr said that was fine, now I know it was not), but apparently used it enough to develop a dependence.  I simply stopped using one day, then WD - and hell - hit a few months later.  I was already on seroquel when I found SA.

 

You are doing it the best way; such patience!  No need to rush.  And don't be afraid to eventually jump off (at the dosage that is good for you) since you have been doing it the right way.  When I jumped at 0.5 mg , it was rough for about a month, the worst being insomnia, then I started to have large windows.  There may be some blips at the end but you'll be fine.

 

Seroquel is a nasty drug and I am glad I'm off it.  You'll get there too.

 

Take care.

[Carmie]

2 hours ago, Survivor1 said:

 

Hi Carmie, thanks for stopping by.  That cold turkey off seroquel was unintentional.  I was taking it on an as-needed basis (dr said that was fine, now I know it was not), but apparently used it enough to develop a dependence.  I simply stopped using one day, then WD - and hell - hit a few months later.  I was already on seroquel when I found SA.

 

You are doing it the best way; such patience!  No need to rush.  And don't be afraid to eventually jump off (at the dosage that is good for you) since you have been doing it the right way.  When I jumped at 0.5 mg , it was rough for about a month, the worst being insomnia, then I started to have large windows.  There may be some blips at the end but you'll be fine.

 

Seroquel is a nasty drug and I am glad I'm off it.  You'll get there too.

 

Take care.

 

Hey again, 

 

Yep, doctors don’t seem to know what they are doing. As-needed basis🙄. When I read here too of people that are told to take their meds every second day n taper that way I can’t believe it. They really have no clue.

 

That was good you only had a month of withdrawals after jumping off the Seroquel at the end. I’ve been on it for years now as it’s taking me a long time to taper off it so I may be a bit more dependent. That being said though I just take each day as it comes. No use worrying about the next day.

 

Take care Survivor 💚

 

 

[Survivor1]

Update:

 

Still in a bind.  I feel that I am somewhat over the lamictal screw-up, but I still have strong WD (at this point not sure from what, with all the d/c's and missteps lately).

 

Major symptoms: 

Strong alerting sensations when resting, preventing sleep; myoclonus and head noises continue but seeing some improvement in these two

Hot flashes/ sweating.

Several awakenings at night, usually in a sweat

Insomnia: these days getting 4-6 hours, broken

Body aches, unable to do any exercise the past month

Anxiety: seeing windows in this

 

Have numerous other symptoms, at least they are tolerable.

 

There really is no other option but to hunker down for the long haul.  I hope to at least get some improved sleep, as lack of it just amplifies the rest of WD.  Have been toying with the idea of increasing lamictal to 2.5 mg (from current 2).  Am waiting to see if sleep improves in the next few days.

 

I hope everyone is seeing some progress in their journey.

 

 

 

[megb]

Hi Survivor, 

 

Just catching up with your journey. I'm glad you are getting rest every night - man it's SO hard to get through with little sleep. Crazy how the most helpful thing to heal our bodies, sleep, eludes us when we need it the very most. Praying for 8 hours for you! 

 

Congrats on getting to such a low dose of Lamictal! I'm not very familiar with that drug, is it for bipolar? How do you taper that so minutely? 

 

Wishing you all the very best!

Meg

[Survivor1]

Another update:  Not so good

 

I am glad I did not updose on the Lamictal as I mentioned in my last post, as it seems I have to taper off it.

 

I have been developing skin issues such as peeling palms and feet, and the occasional blister.  I did not attribute this to lamictal at first but was speaking to my sister who is a nurse and she got worried.  I did some research and noted that many have had this reaction and were advised to get off.  I will be seeing my doctor, but I have decided to get off lamictal regardless of the outcome of that meeting.  

 

I have also had bleeding gums, and the insert on the lamictal warns of "unusual" bleeding.  I do not have gingivitis.  The skin issues I noticed about 3 weeks ago, and the bleeding about two weeks after starting lamictal.

 

All this makes me nervous as I am not yet stable.  Tonight I want to try a decrease of 0.1 mg to see how it goes.

 

Any advice from @Altostrata, or anyone knowledgeable about lamictal is appreciated.

[Happy2Heal]

this may or may not be helpful to you, as we are all so very different....

that said,  lamictal is not, in my experience, a very powerful drug, that is, in my experience and for many others I've known who took this drug, we've generally been able to get off it rather quickly without much problem. I always CTed off it when I took it, and just had a few days of feeling off balance and um, maybe a headache...? I forget. 

 

I have a hard time reading small print, is lamictal the only drug you are on now?

 

oh wait I see it now,  50mgs of trazadone and 2 mgs of lamictal. 

personally I don't think you'd have any problem if you stopped the full 2 mgs but that's only based off my experience and those of a handful of friends

 

 

wait to hear from others to see what they think, ok?

 

If you are super sensitive or sensitized, then it may be a whole different story ok

[Survivor1]

Hi @Happy2Heal,

 

Thank you for weighing in.  Unfortunately I have had a taste of going off lamictal.  I was dosing inconsistently (unintended) for about 1.5 months and went into acute withdrawal. Sky high anxiety and fatigue and all my alerting symptoms came back, so I do not think I could do the cold drop off.  

 

I am currently so unstable from my discontinuance of seroquel and the mess up with the lamictal.  So I am forced to go really slow.  If things get worse with regards to the skin issues, I may have to discontinue cold or make a large drop, but for now I am being careful.  

 

This is an unfortunate development because I have actually seen significant improvement on the lamictal.  The alerting sensations are way down, and the strong sweats are now mild hot flashes.  Even though my sleep is broken, I am getting enough to be functional.

 

Aargh!  Can't seem to catch a break...

 

How are you doing?  I hope your healing continues well.  Your story is inspirational.  All the best.

 

 

[Altostrata]

What was the Lamictal screw-up, when did it occur? Did the bleeding, peeling etc. start right afterward?

 

[Altostrata]

This is more or less your lamotrigine history:

 

On 3/24/2018 at 11:12 AM, Survivor1 said:

Started 1 mg Lamictal on March 19.  Immediately sleep improved to 4-5 hours with 2-3 awakenings per night.  Alerting sensations - head noises, myoclonus - reduced by 70%. 

 

Increased to 1.25 mg March 23.  Sleep improved to 6 hours (4 awakenings).  Alerting sensations still reduced.  Still feeling unrested despite 6 hours sleep, but much more functional than without Lamictal (2-3 hours broken sleep).  I do not plan on increasing the dosage.

 

Last two days, have been experiencing painful stomach cramps and diarrhea.  Looked up side effects of Lamictal and saw diarrhea as a one of them.  

 

On 4/26/2018 at 12:19 PM, Survivor1 said:

Three weeks ago, I increased it to 2mg.  I feel that I have seen an improvement in the particular cluster of symptoms of myoclonus, head noises and alerting sensations.  I have had one or a combo of these symptoms for over 18 months when I c/t'd seroquel, and were exacerbated by my remeron d/c.   Now, I have seen a definite reduction in their intensity.  It used to be that I couldn't lie down to nap as I would start jerking like a fish on deck. Now the jerks are faint.  I feel that Lamictal is of benefit to me.  I hope to not increase the dosage; if my symptoms continue to be as they are, I can manage them.

 

On 5/18/2018 at 5:48 AM, Survivor1 said:

Two months ago, I started lamictal.  I have been dissolving a 25 mg tablet in water and taking 2 mg out, and reusing the suspension for two additional days. Only this past week, I noticed that when I dump the remaining solution after the third usage, there was quite a bit of residue stuck to the bottom of the container.  (I use a regular plastic container.)  So, it seems that the first night I get 2 mg and the following two nights, less than 2.  This has been going on for the entire time I have been taking lamictal!  This situation really stinks because I had seen improvement when I first started lamictal.  From now on I will be making a fresh solution every night, and hoping I stabilize soon.  I don't know if anyone tapering has had this issue with lamictal, or it's just my container.

 

 

Did the blisters, peeling, etc. start in March-April or in May after you corrected your lamotrigine dosing?

 

Were you ever able to get 2mg or 5mg lamotrigine tablets?

[Survivor1]

Hello @Altostrata,

 

My lamictal screw-up was as follows:

 

Mar 19 - started lamictal.  Was making a fresh suspension every three days.  It appears that on the second and third day, residue was getting stuck to the bottom of my container so that on these days, I would get less than the appropriate dosage.  This inconsistency went on for 2 months!

 

May 18 - I started getting very strong WD.  Investigated and clued in what was happening and started to make a fresh batch of suspension everyday instead.

Have been taking a consistent dosage since May 18.  WD has eased but not gone.  

 

I had noticed the gum bleeding about two weeks after starting lamictal but did not make the connection.  It seemed to come and go, but has been here consistently for the past 3 weeks.  The peeling I noticed about 3 weeks ago.  I am having other unusual symptoms too: persistent cough, acne, acute hair loss (even worse than I had been experiencing before), occasional sharp pain in tummy and base of skull, neck stiffness.  None of these seem to be from WD from any other discontinuances as I had not had them before lamictal.

 

I would like to start tapering lamictal, but am nervous as I am not stable at the moment.

 

Please let me know what you think.  Thanks Alto.

 

[Survivor1]

14 minutes ago, Altostrata said:

Did the blisters, peeling, etc. start in March-April or in May after you corrected your lamotrigine dosing?

 

Were you ever able to get 2mg or 5mg lamotrigine tablets?

 

Hi Alto,

 

I noticed the peeling after I corrected the dosing.  Also, I have 25mg tablets that I dissolve in water to get my 2mg.  I never tried getting the 2 or 5mg tabs.

[Altostrata]

I don't know. It seems to me 2mg would not kick off a systemic allergic reaction, which is known to happen with higher doses of lamotrigine.

 

There could be some irregularity in your dosing such that you are getting more than 2mg. Are you able to get a prescription for the 2mg pediatric tablets? At the least, this would make it easier for you to taper.

[Survivor1]

Alto, I will try for the 2 mg tabs but I'm not optimistic, as I think my doctor has to call in for it every month from the manufacturer.

 

What do you think about my starting to taper while unstable?

[Carmie]

 

22 hours ago, Survivor1 said:

Hello @Altostrata,

 

My lamictal screw-up was as follows:

 

Mar 19 - started lamictal.  Was making a fresh suspension every three days.  It appears that on the second and third day, residue was getting stuck to the bottom of my container so that on these days, I would get less than the appropriate dosage.  This inconsistency went on for 2 months!

 

May 18 - I started getting very strong WD.  Investigated and clued in what was happening and started to make a fresh batch of suspension everyday instead.

Have been taking a consistent dosage since May 18.  WD has eased but not gone.  

 

I had noticed the gum bleeding about two weeks after starting lamictal but did not make the connection.  It seemed to come and go, but has been here consistently for the past 3 weeks.  The peeling I noticed about 3 weeks ago.  I am having other unusual symptoms too: persistent cough, acne, acute hair loss (even worse than I had been experiencing before), occasional sharp pain in tummy and base of skull, neck stiffness.  None of these seem to be from WD from any other discontinuances as I had not had them before lamictal.

 

I would like to start tapering lamictal, but am nervous as I am not stable at the moment.

 

Please let me know what you think.  Thanks Alto.

 

 

Hi Survivor, 

 

How are you faring?  Thanks for stopping by on my thread. I’m sorry about all the symptoms you have at the moment. Hope your gums are a bit better. We get so many weird symptoms, and everyone gets something different. Every time I get a new symptom now I just go: “It’s probably withdrawals.”  No matter how weird the symptom is I have learnt it could be withdrawals. 

 

With my water titration i always make a fresh batch every day. I’m using a 25mg tablet of Seroquel and just taking 7.5mg of it. I throw the rest of the water away and start afresh the next day with a new 25mg tablet. I’m sorry you had three months of inconsistency. I feel safer making it afresh every day. Water can evaporate too and we are so sensitive to every little change.

 

How has your brain fog been? Have you been able to do any reading? I’m too foggy in the brain to start reading a novel, but I hope  to some time in the future again.

 

Sending hugs😂💚

 

 

 

 

[Survivor1]

Update:

 

Saw Doc who thinks that my symptoms are not allergic reactions, but uncomfortable side effects. Whew!  For information sake, the explanation of bleeding gums when brushing is that lamictal causes disruptions in the mucus membranes of some people.  The brushing probably "injures" the sensitized gums, hence the bleeding.

 

I have decided to stay put for the moment hoping to stabilize, unless the side effects become unbearable.  I am amazed that such a low dose has such strong side effects for me.

 

Currently, taking a really long time to fall asleep, more than two hours.  I have decided to dose the lamictal in the morning instead, in case timing is a contribution factor.  Let's see how that goes.  I still have tachycardia random times of the day, but especially at night; some alerting at night when I relax, that "pull-from-the-edge feeling as I drift off; and waking up in a sweat at 4 am.  Also getting high anxiety during the day.  

 

@Carmie, thank you for checking in with me.  Yes I think the fog is lifting somewhat.  Now I hope I get some sleep so I can focus!

 

 

 

 

[Altostrata]

How are you doing now?

[Survivor1]

9 hours ago, Altostrata said:

How are you doing now?

 

Hi Alto,  I am doing better, thanks for asking. I am still not stable but symptoms are tolerable.  

 

Regarding the skin peeling, I am seeing improvement, so hopefully it is just my body adapting to the consistent dosing.

 

This lamictal is a double-edged sword:  It is definitely improving my sleep and all the alerting symptoms I complained about (myoclonic jerks, head wooshes and noises, inability to lie still without an alerting sensation) have been gone this past three days.  In fact, I feel that if I hadn't messed up my dosing, my sleep would be even more improved.

 

On the other hand, I have pretty strong side effects from this small dose: acne, hyper pigmentation, other skin issues, and quite a few others.

 

I am trying to tolerate the side effects, as I need to repair my sleep.  My plan for now is hold here for an extended period, and then taper off lamictal, then trazodone.

 

A question for you Alto: how long should I hold before I start tapering lamictal, to ensure the benefit from the lamictal sticks?

 

Thank you for your support and insight.

[Altostrata]

Lamotrigine has a short half-life, you might benefit from a divided dose, that may lessen side effects and spread the beneficial effects over 24 hours.

 

In other words, 1mg in the morning and 1mg in the evening. You'd accomplish this by moving 1mg to the evening, which may help your sleep.

 

Is it possible for you to get a compounded liquid? I am troubled by the side effects. I have an intuition that 2mg might be slightly too high for you. (But a divided dose might fix that, being easier on your metabolism.)

 

If you can get comfortable on lamotrigine, I would plan on staying on a stable dosage for at least 6 months. You'll have to see how it goes.

[Survivor1]

Hi Alto,

 

Thanks for the advice. I will take divided doses from now on.  I am still working on getting the 2 mg tabs, hopefully the doctor agrees; also will find out about the cost of compounding.   Just found out that compounding is possible but not covered by insurance so will be $45 out of pocket. I'm going to have to weigh the pros and cons of this.

 

If all else fails, I will wait until I am stable and try decreasing it to 1.5mg or even 1 if possible.  I feel stability is within sight, last two days were completely anxiety free and today I had it low at 4/10 until 2 pm.  I actually slept 7.5 hours the night before last with one awakening, with last night 5 hours.  I have mild foot pain 3/10 as my other significant symptom.

 

Regarding waiting 6 months, I'm Ok with that, but I am assuming I shouldn't be doing any other tapering (trazodone) in that time?

 

Thank you so much Alto.  I will update as things change.

[Survivor1]

Update:

 

Am in the process of splitting the lamictal dosage.  Too soon to tell if it is working.  But I have a feeling that a lot of what I am feeling is due to WD, and less due to lamictal side effects. At least I hope so, because I am in no position to start decreasing lamictal.

 

When I dc'd seroquel (and a small dose of trazodone) in Feb, I was not 100% symptom free from the dc of mirtazepine 8 months earlier.  Then two months ago I messed up my lamictal dosage which sent me into a tailspin.  So I have a lot to recover from.  I was very optimistic that stability was around the corner in my last post, but I think it is further away.  I plan to hold where I am indefinitely, until WD has diminished to minimal.

 

Major symptoms:  

Strong anxiety/shakiness: I do get breaks from it during the day.

Foot pain: kind of like fasciitis, numb spots on soles

Joint pain: some difficulty navigating stairs, and the like 

Sleep:  MUCH improved.  Still wake up occasionally during the night, but usually I can get 5-6, sometimes 7 hours sleep, which is good enough for me

Hangover/groggy feeling in morning:  Will see if it improves when I complete splitting the dose.

Hot flashes: mild, improved

Skin peeling:  improved

Hair loss: no improvement, but no longer dry and brittle

Rash on back: preceded lamictal, became worse after I dc'd seroquel and messed up on lamictal, seems to be improving

Acne:  No more breakouts, but face still oily, with lots of whiteheads.

Head pain: not really headaches, but occasional stabbing pain of short duration at base of skull

Tinnitus:  Worse, more shrill since the lamictal dosing mess.  Thankful that it is only one tone usually.  Am more accepting of it now than I was when it started. 

 

Major improvement:  The cluster of alerting symptoms I had earlier that led me to lamictal has abated significantly.  Have not had a myoclonic jerk in several days, head noises are minimal, and the "convulsions" I had when simply resting are 90% gone!  (Hence my sleep improvement!)

 

Overall, I am quite functional, thanks to the sleep.

 

 

[Survivor1]

Update:  Not good...

 

Despite posting last time that I was seeing some improvement in the skin peeling, I have to say that was short lived.  

 

Shortly after posting the last post, I looked into my mouth to see if I could determine why I was bleeding after brushing, and I noticed mouth ulcers!  My lips are also starting to peel.  This for me is a game changer.  I have made an appointment with a dermatologist, but I feel I need to get off lamictal ASAP.  I have been noticing eye discharge also that I never had before, but never drew a connection.

 

I do not have the typical rash or fever, but feel that I am in the early stages of Stevens Johnson Syndrome, as I have developed macules (skin discoloration).  According to the literature, macules can be a precursor to the rash.  There is no haemorrhageing , but the skin on my palms feel sensitive.  I also have a lot of mucus production and coughing.  Today I took no lamictal.  Now I have to deal with the recovery from this and from the WD.

 

I am crushed. I was given a taste of what lamictal WD feels like when I messed up the dosing earlier.  I am not prepared for it.  But I have no choice.  I will post as things change.  

 

[Altostrata]

I am sorry you're going through this. Perhaps if you decreased the lamotrigine gradually, the reaction might decrease.

[Survivor1]

Hi @Altostrata,

 

Thank you for your kind words.  

 

Sadly, I have had to discontinue the lamictal without tapering.  The day of my last post saw a dramatic turn for the worst.  The rash showed up and spread rapidly down one arm.  I was having elevated temperature (99 degrees), swollen lymph nodes and eye pain.  Decided to go the the ER where the allergic reaction was confirmed.  Because there was no haemorrhaging, I was not kept but told to return immediately if worsening symptoms occur.  Was sent home with antibiotic eye drops and mouthwash.

 

Thankfully within two days, I could see improvement (temp down, rash subsiding).  I have been off for 11 days now, and improvements continue (now no more eye discharge/conjunctivitis,  rash even more improved).  Was told it could take a few months to see complete recovery.  

 

I am actually in shock at how such a small amount of lamictal can have such a strong reaction, but I guess if your body does not agree with something, even a small amount will cause it to rebel.  

 

Now I am thick in WD. Will post again as things continue to improve.  

 

Thank you so much for your support.

[Altostrata]

I am sorry you had this allergic reaction to lamotrigine. This does not seem to be uncommon, but you are unusually sensitive to it.

 

Please try to stay as calm as possible while you recover. Even though you were on it for a short while, it's possible your nervous system has settled down a bit.

[Survivor1]

31 minutes ago, Altostrata said:

Even though you were on it for a short while, it's possible your nervous system has settled down a bit.

 

Funny you should say that ... two of the symptoms I was targeting with the lamictal - inability to lie still without "convulsing" and the myoclonic jerks seem gone!  I hope I do not jinx it, I should be able to say definitively so in another 2-3 weeks.  For now it appears that the 3.5 month usage did confer some benefit.

 

As always, Alto, thank you.

[Altostrata]

You're welcome. I wish I could do more.

[Survivor1]

Update:

 

Good:  WD from lamictal:  I think (hope!) I'm over the hump.  There are some residual symptoms but mostly things are tolerable.  Remaining symptoms are mild foot pain, some hot flashes, multiple wake ups but can get back to sleep because of the hypersomnia, switches from tachycardia to bradycardia, some GI issues. Overall, I feel OKish.

 

Bad:  Allergic reaction continues!!!  At this point I am wondering if Trazodone is causing this.  I am providing some background on this below.

 

I have been on trazodone for 2.5 years (since Oct 2015).  During this time I have had a mild back rash.  I never connected this rash to trazodone, because I was always discontinuing/reducing some drug (clonazepam, gabapentin and others), which always exacerbated my skin issues.  This rash continues to present day, but did not progress (it does worsen when I discontinue a drug or make large drops, but improves when I stabilize).  

 

When I started Lamictal, I noticed allergic reactions such as mouth ulcers, eye discharge, peeling palms and the like.  Now that I am off lamictal for 27 days, some symptoms remitted somewhat but not totally.  At this point I am having additional mouth ulcers, skin eruptions, itchy throat and cough, peeling palms (after having abated somewhat immediately discontinuing lamictal).  Temperature is creeping up again also.  I don't know if this reaction is simply related to lamictal and I have to give it more time to see complete cessation of the allergic reaction, but because the symptoms are worsening, I am becoming really triggered.

 

I am feeling very overwhelmed and vulnerable.  I am having visions of having to drop trazodone cold from 50mg, and it is sending me in a such a spiral downwards.  I don't know if I am capable going through that withdrawal, yet I may have to?

 

I made an appointment with an allergist in 2 weeks, hoping have a skin test to determine if trazodone is really causing an allergic reaction.  I have also asked my doctor to prescribe the brand name medicine in case I am allergic to fillers, etc.  (Don't even know if brand name exists as all pharmacies seem to carry the generic form from what I have found out.). I seems like I will have to continue with trazodone for at least another two weeks until I speak with the allergist.

 

Needless to say, remaining calm in the face of this is a challenge.

 

Any advice from Alto/moderators/others is appreciated.

 

 

[Carmie]

Hi Survivor, 

 

Just wondering how you’re doing?💚

[Survivor1]

Update ... this is a long post so bear with me.

 

So much has been going on that some days I do not know which way is up and which is down.  

 

Steven Johnsons Syndrom (SJS):  This condition affects the skin and mucus membranes; as a result I have had to be seen by multiple specialists for monitoring, since I have skin peeling in many areas such as the nasal passage and other mucus-membrane-heavy areas.  Without going into the details of all that afflicts me, the bottom line is that nothing can be done for this condition, any "treatment" is just for managing symptoms; time is the healer (haven't we heard this before!!).  Because it is a systemic condition, healing waxes and wanes, like that from AD withdrawal.  The good news is that I have been seeing small improvements, and I am no longer getting severely triggered by the symptoms.  

 

Steroids:  Five weeks after stopping lamictal, I was given a shot of Kenalog 60mg (equivalent to 80 mg prednisone) to arrest the skin peeling and rash.  Steroids are a first line treatment for SJS, but its efficacy is nebulous.  There are anecdotal stories of its helping, and others of no improvement.  For me, it only took the rash away.  But, in retrospect, this was the worst thing that could have been given to me.  

 

I am having a horrible reaction to the steroid.  The dosage is high enough to power a horse, and one week after the shot I started having horse-sized withdrawal from it.  It is worse than acute AD withdrawal (if such a thing exists).  Anxiety, stabbing abdominal pain, lightheadedness to the point where I could not feel my legs, and at least five other symptoms at 10/10, for a month NONSTOP.  I wanted to die. I am truly not one given to hyperbole, but this was easily one of the most horrible periods of my life.  This past week, I have been getting some windows, so I am hoping I have turned a corner.  But I still have a lot of healing left to do.  For anyone wondering, steroid WD feels EXACTLY like (acute) WD from psych drugs.  

 

The internet is rife with steroid WD stories, and I could have written many of them; many people have seen improvement in 3-4 months, so I have to hunker down for the long wait, as it had only been two months for me.  One symptom that was/is devastating is my developing glaucoma from the steroid.  Two days after the shot, I could barely see.   Went to ophthalmologist who diagnosed glaucoma.  He said steroid use is a culprit and it could possibly resolve in time.  More waiting again ...  To add insult to injury, some of my SJS symptoms were worsened because steroid WD causes severely dry skin and mucus membranes, causing them to peel !!!!! If I weren't in so much agony, I would almost laugh ...

 

Lamictal WD:  I went five weeks from discontinuing it to getting the steroid shot.  The WD was strong but manageable.  It then became subsumed by the reaction to the steroid.  

 

This whole experience is quite surreal.  Somehow though, I have been able to remain optimistic. Don't ask me how.  I had one day of intense anger/why-me/can't-catch-a-brake talk, but it was so draining that I had to stop it for my own sanity (acceptance?).  

 

Whew!

 

We are being deluged by non-stop rain today, but as I am writing, the rain is letting up.  I feel like this is metaphor for me right now.  I have been in a deluge, but I'll get dry again.

[Carmie]

Hi Survivor, 

 

Im so sorry to read about your illness and I was so sad to read how severe your reaction to the steroids were. That was the last thing you needed. Wow! Acute withdrawals! That must have been horrific. I’m glad you’re getting some windows now though, hope you continue to get more.

 

I’m glad you’re feeling optimistic though, not always easy. 

 

Hope you come out of the acute phase soon n the windows keep getting bigger💚

[megb]

Hi Survivor, how are you doing? Praying for you now.  I've had a HUGE setback, but trying to be hopeful. Really hope for good news for you!!!

[Survivor1]

Hi @megb, I sent you a PM.  take care.

[Survivor1]

Update.

 

Steroid shot: 3.5 months since the dastardly shot and I am slowly emerging from under the rock that I had retreated under.  I am nowhere near stable but at least I am now somewhat functional.  This was one of the worst experiences of my life and coming from someone with my drug history, that's saying a lot.  It wouldn't surprise me if this goes on for another 3-4 months.  

 

When the WD appeared, I called the dermatologist who administered the shot and asked if a taper was necessary.  He was sure that since "it's only a single shot" it is not necessary.  I have an appointment with him next week to enlighten him of what a single shot can do.  

 

To all reading this, please think twice about getting steroids for anything.  They are in many products that you do not think of: medicated shampoos, topical creams and even some skin treatments like moisturizers.  My own teenage daughter was prescribed clobetasol shampoo for dandruff (from the same dermatologist!).  Turns out it is 1,100 times more potent (not making this up) than hydrocortisone and can only be used for a week, otherwise the adrenals shut down.  He did not warn her about the one-week part.  However, it was on the insert and we read it.  She used it twice and "forgot" to continue (her teenage laziness came in handy for a change).  I trashed it. 

 

SJS:  Unsure of any improvements as the steroid WD really muddied the waters.  Both are very similar.  The most significant quality-of-life issue is constant phlegm production and clearing of my throat that is definitely SJS.  I will need to get an endoscopy done to investigate the cause but am waiting to stabilize from the steroid shot, otherwise I will need to be given a steroid cover during the procedure.  And I will not agree to that.

 

Overall, I am better than a month ago. 

 

PS.  How do I insert a link to an article?