☼ Callie: venlafaxine XR or Effexor XR - hoping to be well someday

[LilBit]

I forgot about that... I used that stuff too!  Seemed like it helped but not sure.

[Callie]

Okay, I'll try the vaporub route first as that seems to be the least harmful. If it doesn't work, I'll try low dose cold med or let it run its course. Thanks you two! Much appreciated!!

 

Callie

[Callie]

LilBit & Rachellynn, Hii!

 

Okay, I tried vaporub for the last two nights, and it did help somewhat. No more crazy runny nose. An annoying cough kept me up last night though, so I decided to go the medicine route. Thanks, LilBit, for bringing dosage amounts to my attention. I was thinking about that, and it dawned on me to get a children's formula. That's what I did. Being extra cautious, I took only half of the recommended dosage. Hopefully, it will help without adding to my WD symptoms. I'll let you know what happens.

 

Callie

[Callie]

I've been sick now for 10 days with a nasty head cold. Three days ago I tried a half dose of children's formula cough and cold medicine. Later that day, the skin on my arms went from the usual hypersensitive state to an extreme hypersensitive state. A little while ago, my arms suffered a severe hypersensitivity/parethesia attack so bad that it felt like 10,000 fire ants were crawling on them. I was crying. Could this be from the cold medicine I took? It's been about a year since I suffered so badly with this symptom. I'm also thinking that perhaps my body is trying hard to heal my cold that it's not working on healing my typical WD symptoms. Any thoughts from anyone?

 

As for my head cold, mucus has turned thick and white. I don't know if that's good or bad. I have a blood-red tissue burn under my nose that hurts like heck from constant blowing. My head feels as if it's going to implode and explode at the same time. This is a typical WD symptom of mine, but now it's more intense. My fever is gone though, but my temperature readings have dropped down into the 97-degree range. I will not entertain the thought of seeing doctor at this point. I'm terrified of what they may have in their bag of drugs.

 

Thanks,

 

Callie

[Callie]

Does anyone know if taking one half dose of children's formula cough and cold medicine could ramp up WD symptoms? Or could just fighting a head cold do the same? I'd certainly appreciate knowing if anyone has the answer.

 

Thanks,

 

Callie

[LilBit]

I would this it is definitely possible considering how sensitive our systems are in WD.  Even supplements and foods, environmental toxins and chemicals can ramp up symptoms in some people so I can see how cough medicine, even a small dose, could do the same.

[Callie]

Hello, Longroadhome!

Symptom Update:  31+ months AD WD

 

*Hot flashes (I prefer to call them heat surges. Two years ago I was having ~40 of these per day. Now it’s down to ~8 per day during a wave and ~3 during a window.)

*Head pressure, neck, and upper back pain/stiffness (I group these together as they are connected for me. I get immediate relief from this by pressing on trigger points in my skull, neck, and upper back. I work on trigger points daily whether symptomatic or not. See next symptom.)

*Knotted and ropey muscles in upper back and neck (Most of the knots, which were palpable, have disappeared. Still have some ropiness. I put two tennis balls in a sock and place them between my upper back and a wall. By rolling or pressing and holding on the tender spots, there’s immediate relief, even in my head. It’s all connected, you know. I use a trigger point massager on my neck. I also roll out my back with a foam roller.)

*Hair loss on scalp (This has stopped and waiting for hair to thicken back up.)

*Body hair loss (Lost most of the hair on my arms. Hair on legs grows s l o w l y. Don’t have to shave as often!!)

*Body shakes and tremors (These started in December 2017 and were pretty bad—rather violent shaking. Nowadays these happen toward the end of a wave and are very mild and short lived.)

*Chills (Get these occasionally and very mild.)

*Nasal congestion and sneezing (Happens only in evening and in morning just after getting up.)

*Throat clearing (still have this)

*Dry cough (still have this)

*Insomnia (Seems to be resolved since sleeping with white noise machine. I hear the crickets all night in my sleep!!)

*Extreme fatigue and lethargy (Days on end when I could not get out of bed. Also, sitting like a statue for hours just staring into space. Completely non-functioning. Homebound. Everything took enormous effort. This has resolved. Hope like heck it never comes back.)

*Stupor-like Attacks (Could only open eyes half way, if at all. Mouth dropped open and stayed that way. Extreme weakness. Was incapacitating. Must have looked like I was brain damaged. Could not stop moaning. Felt like I was dreaming but awake. Thought for sure that I was dying. Very weird. This has resolved for the most part. Very mild and short lived during waves now.)

*Head and chest throbbing sometimes. (Still have this but is mild compared to before when it was a hard pounding sensation.)

*Clicking sounds in both ears (Still get this occasionally. Tinnitus perhaps? Once read on a website that this indicates brain damage.)

*Creepy, bizarre, horrific, indescribable sensations throughout head and body (Still have these but not as debilitating as before. However, they do intensify during waves.)

*Gait (Sometimes appearing to be drunk as I cannot walk a straight line. Happens very rarely now.)

*Queasiness, lightheadedness, and dizziness (Occurs sometimes when getting out of bed in the morning.)

*Constipation (No longer a symptom. This stopped about 10 months ago.)

*No sensations for basic bodily needs (i.e. hunger, sleep, bathroom needs, or thirst. These have all returned. Thirst was the last one to come back.)

*Extreme weight loss/muscle loss (Literally was skin and bones. Now back to normal weight, so this has resolved.)

*Labored breathing or rapid, shallow breathing (Air hunger perhaps? Still have this during waves.)

*Biting inside of cheeks, tongue, and lips when eating (Deep wounds. I think this has to do with lack of coordination. Doesn’t happen anymore, so resolved.)

*Loss of sense of taste at times or hypersensitive to taste (Resolved)

*Yawning (Resolved)

*Sense of smell (Couldn’t tolerate fragrances of any kind. Resolved)

*Twitching (Mild around mouth and eyelids)

*Muscle cramps (Feet and lower legs)

*Weakness/impaired stamina (Still experience this when I overdo it.)

*Stabbing with knife sensations all over (These went away but now occasionally have sensation of being pricked with a few thick needles along my mid spine.)

*Pinching sensation on back of left arm (Was quite a nuisance, but now resolved)

*Urine output (Seems to be greater than liquids taken in. Still struggle with this.)

*Numbness in tip of little finger, left side (Still have this but it comes and goes.)

*Cold-to-the-touch patches of skin that migrate around my body (Still have this.)

*Skin issues as follows:

**Itching (Insatiable itching subsided months ago. Still have itching that comes in waves.)

**Sparking sensations on arms (Went away months ago.)

**Burning (Intensity has eased but still very uncomfortable, especially on arms.)

**Stinging (Intensity has eased but still very uncomfortable, especially on arms.)

**Feeling that arms are wrapped in cactus plants (Gone)

**Frozen to the bone (Felt this in my arms and hands. Now occasionally, only my hands. Use an electronic hand warmer to ease this symptom.)

**Light touches cause tickly sensation that goes directly into my head.

**Formication (Fire ants on skin sensation and worms crawling just beneath skin. No more of this. It’s resolved.)

**Hypersensitivity (Mostly affects fingers, hands, and arms. Extremely smooth, textureless things feel normal. Anything with the slightest texture feels like sandpaper, burlap, etc. It’s like my sense of touch is enormously amplified and distorted. That explains it better than the word “hypersensitivity”. Another way to describe it is like having no skin, just raw, exposed nerves. Sometimes I think that the tactile sensory filtering gates in my brain are always open.)

**Rashes/Skin Eruptions (Easing up on these. Hives. Single, itchy eruptions that look just like mosquito bites. Rash erupted in 2018 on skin that had received radiation therapy over 20 years ago. This rash completely disappeared but came back recently with less intensity. It’s disappearing again. Two very rough textured rashes. One on my arm is gone. One on leg is still there. These last for months.)

**Fingers are most often pruny looking

**Tight looking skin on palms of hands

**Dermatographia

**Some things like dental floss and eating utensils leave red indents on my fingers and palms that last for hours.

 

I have and have had more symptoms than these. I just can’t remember or think of them all. Regarding emotional symptoms, I remember having anxiety early in WD. That went away. I do not have depression either. I’m doing okay emotionally.

 

I still experience waves and windows. I am nowhere near healed, but I know I’m getting there. It’s like there’s this thick veil between me and total recovery. There are a lot of tiny holes in that veil though; and someday that veil will completely disintegrate. I’m sure of it. I have hope. Patience, perseverance, acceptance, and time will help us all heal.

 

Callie

[Longroadhome]

Can’t remember if I have replied to this post already but thanks for taking the time to  detail all of your symptoms Callie it really helps. 

Great that you are healing you have been through so much and show great strength of character . 

It really does seem that people see marked difference from two years onward if they don’t mess with meds. 

You had sooooo many symptoms do you think this was because of fast taper ? 

Why did you change meds from 2004 to 20017 was it due to poop out ? 

Keep in touch

LRH 

[Callie]

Hello, Longroadhome!

 

I apologize for my late response.

 

On 12/1/2019 at 8:32 AM, Longroadhome said:

You had sooooo many symptoms do you think this was because of fast taper ? 

 

Yes, I’m pretty sure that’s the reason, plus Venlafaxine XR (Effexor) is one of the worst to be on and really hard to get off of due to its short half-life. At least, that’s what I’ve read. Here’s how the doctor tapered me off:

 

            Trazodone 100 mg. (Had taken for 13 years, 2004-2017):  No taper, cold turkey

            Buspirone 30 mg. (Had taken for 13 years, 2004-2017):  2-week taper

            Lexapro 20 mg. (Had taken for 6 years, 2004-2010) Cold turkey?

            Abilify 5 mg. (Had taken for 7 years to boost effects of Venlafaxine XR, 2010-2017):  No taper, cold turkey

            Venlafaxine XR 225 mg. (Had taken for 7 years, 2010-2017):  7-week taper

 

I was off all drugs in less than two months. I found out too late about proper tapering, so I could not go back on them and do it the right way. I don't know if it would have made a difference anyway.

 

 

On 12/1/2019 at 8:32 AM, Longroadhome said:

Why did you change meds from 2004 to 20017 was it due to poop out ? 

 

Yes, it was most likely poop out. I was being bullied at work and wasn’t coping with it well enough, so my doctor changed my prescription in 2010. It was an abrupt switch from Lexapro to Venlafaxine XR and Abilify.

 

Longroadhome, how are you doing? Please let me know.

 

Callie

(aka dupedbydoctors)

[Guest]

On 2/12/2018 at 11:58 PM, JanCarol said:

Hey Callie - 

 

While I was here I just reviewed your thread - and really - really - really - 

 

You went off 4 drugs just 9 months ago.  Two of which - Effexor and Abilify - are absolute demons.  These and the Trazadone hit multiple receptors, so - it's no wonder your system is in an uproar.

 

So this is to encourage you - an "uproar" is quite normal for recovering this drugging and rapid withdrawal (Really, cold turkey, or fast taper).

 

All of the symptoms you report - are not nutritional deficiencies, they are normal withdrawal.  It's sad, but true.  These things you are experiencing - many others have experienced before you!  

 

There is a Delayed Onset of Withdrawal Symptoms - so 9 months out is perfectly normal.  (notice I'm using the word "normal" a lot?)

 

Try this video, it explains the way that your systems repair...

Healing from Antidepressants - Patterns of Recovery (by Toxic Antidepressants)  (just 4 minutes long)

 

What happens is - your endocrine, digestion, muscular, and nervous systems have all been discombobulated (that's a technical term).  When you are having symptoms, it means that system is repairing.  So when you are having hot flushes, or numbness, or muscular disruption, digestive troubles - any number of body symptoms and emotional symptoms too - this is your body repairing that system.

 

You can say, "I am having symptoms," or you can say, "I am healing."  Which do you prefer?

Many people are helped by seeing a list of possible symptoms. Additionally, you can print out several of these to track your progress over the weeks.  When I was fully drugged, I had 29 of these symptoms, and at last check it's down to about 12.  Here is the list:  Dr. Joseph Glenmullen's Most Common symptoms of Withdrawal

 

* * *
Later - I thought of you as my "what's next" took over this post, and I had to abandon it.

 

I took my walk.  I went 20 minutes!  And a big hill!  Next, I got into a cool mag bath (remember it's stinking hot here), and soaked for 20 minutes.

While I was there, I thought - what's next? and washed my hair.

After getting out of the mag bath - omg - back feels better!  When I woke up today I thought - no way was I going to make it through the day without pain drugs - but - here I am, almost dinner time, and drug free.  I even felt well enough to make a fresh juice as a digestive before dinner!

 

Having a large tool kit helps with "what's next."

True confessions:  As I was in the bath, I resented it.  (I'm being honest here).  I kept thinking about things I wanted to say to you, to this friend and that friend - I wanted to be in here, in the cool office talking to you.  But that wasn't on my "what's next" plan.  So I told myself "Later," and here I am writing to you again!

 

That's another key to "what's next," is sometimes things have to be told, "LATER."  In telling a thing that it's "Later," then you can settle back into the present moment, and "what's next."

 

* * *

The other thing I want to ask - even though all of your symptoms are normal for withdrawal - is how your doc checked thyroid.  99% of docs just check TSH and then say, "You're fine," but there are a number of conditions which show up in a more detailed profile, including Free T3, Free T4, Reverse T3.  TSH is measuring a pituitary hormone, and is not measuring the thyroid at all.  I'm not suggesting you have a thyroid problem - I don't think you do.  I believe you have withdrawal.

What I am suggesting is - when you get labs done - get a copy of your lab reports and start a file at home so that you can track your own bloodwork.  You can use your labs to start educating yourself about your health.  While you are in withdrawal, these numbers may be all over the place - but as you start moving into health, getting your labs and learning about them is a key piece to taking charge of your own health.  It annoys doctors,  they don't want you to be the expert about yourself - but some doctors appreciate that you are making an effort to get informed.  This practice has come in handy for me this past year, as I have started tracking cardiology reports, labs and performance.

 

Okay!  What's next?  Supper's on!

I hope you see the sun today!

 

He doesn’t mention skin problems in his withdrawals oddly enough

[JanCarol]

9 minutes ago, Ryguy said:

He doesn’t mention skin problems in his withdrawals oddly enough

 

Glenmullen's list is by no means complete or comprehensive.  It is a list of the most common symptoms.

Skin symptoms are extremely common - from severe cystic acne, to dry flaky skin, to itchy skin. . . it, too, is another system which needs to re-regulate.

[Guest]

1 hour ago, JanCarol said:

 

Glenmullen's list is by no means complete or comprehensive.  It is a list of the most common symptoms.

Skin symptoms are extremely common - from severe cystic acne, to dry flaky skin, to itchy skin. . . it, too, is another system which needs to re-regulate.

Thanks for the prompt reply and thanks for confirming that , appreciate it , he should add that in since it’s not only common but very distressing 

[sunnysideup69]

14 hours ago, JanCarol said:

 

Glenmullen's list is by no means complete or comprehensive.  It is a list of the most common symptoms.

Skin symptoms are extremely common - from severe cystic acne, to dry flaky skin, to itchy skin. . . it, too, is another system which needs to re-regulate.

 

Hi, just popping in here to say, thanks @JanCarol. This is helpful. I like Ruyguy was noticing that skin symptoms are not on Glenmullens list, so this is helpful to know. I did a cold switch from Cit to Ven last year and, 3 months after quitting the Cit, my skin went bonkers. I've gone from clear skinned to spotty faced with eczema. Pretty sure it's from cessation of the Cit as it started to happen bang on three months after stopping it. Guess it's another case of accepting and letting time pass.

[Longroadhome]

On 12/7/2019 at 2:32 PM, Callie said:

Hello, Longroadhome!

 

I apologize for my late response.

 

 

Yes, I’m pretty sure that’s the reason, plus Venlafaxine XR (Effexor) is one of the worst to be on and really hard to get off of due to its short half-life. At least, that’s what I’ve read. Here’s how the doctor tapered me off:

 

            Trazodone 100 mg. (Had taken for 13 years, 2004-2017):  No taper, cold turkey

            Buspirone 30 mg. (Had taken for 13 years, 2004-2017):  2-week taper

            Lexapro 20 mg. (Had taken for 6 years, 2004-2010) Cold turkey?

            Abilify 5 mg. (Had taken for 7 years to boost effects of Venlafaxine XR, 2010-2017):  No taper, cold turkey

            Venlafaxine XR 225 mg. (Had taken for 7 years, 2010-2017):  7-week taper

 

I was off all drugs in less than two months. I found out too late about proper tapering, so I could not go back on them and do it the right way. I don't know if it would have made a difference anyway.

 

 

 

Yes, it was most likely poop out. I was being bullied at work and wasn’t coping with it well enough, so my doctor changed my prescription in 2010. It was an abrupt switch from Lexapro to Venlafaxine XR and Abilify.

 

Longroadhome, how are you doing? Please let me know.

 

Callie

(aka dupedbydoctors)

Hi Callie 

how are you doing ? 
I’ve  just read all of your thread and glad I have as I see for many many months you felt you were getting worse . 
well that’s how I feel at the moment and I’m still on a low dose of two meds . The pregabalin was given to help with the side affects of tapering of Paxil. 
I’m  thinking of starting to taper slowly as I think my symptoms will remain throughout anyway as I started off in poop out . 
my hives are still with me. Though more tolerable and not as bad some days . However I’m getting lots of head pressure really weird dizzy sensations that don’t go away even when I lie down . It lasts all day every day did you have this ?
Thank you for your reply in December and a belated 

Happy New Year to you !!!  
 

you’re really starting to heal Callie I can see that from reading through your thread 

that’s fantastic well done you show so much courage ! 

 

did you have support from family and friends ? 
 

take care 

LRH 
 

[Callie]

Hello, Longroadhome!

And a belated Happy New Year to you as well! Almost time to say Happy Valentine’s Day!

You mentioned that you’re thinking of tapering slowly. Have you gone ahead with it? From my experience, I know that a fast taper sends a person right into torturous hell, so I would recommend to anyone to go as slow as molasses, a turtle, a snail. If I had known 34 months ago what I know now and could have found a knowledgeable doctor, I’d still be tapering today. I do read a lot about people suffering through their tapers, so the only thing I can conclude about that is perhaps the reduction schedule is incorrect. I could be wrong about that; I’m no expert on this, for sure.

You mention three symptoms that you are struggling with, among others, I’m sure:  Hives, head pressure, and dizziness. It’s taken so long for me to respond to you—and I do apologize for that—that those symptoms may have already decreased in intensity for you or have vanished completely, which I do hope the latter. As for hives, I had them, too. They’d pop up and then disappear in 12-hours time. I can’t remember the last time I had an episode of them, so I’m hoping it’s safe to say that I’m done with that symptom. Because it resolved for me, it will definitely resolve for you and for anyone else that’s experiencing them. I only had them once in my life before—long before having taken ADs—and that was the day after I had gotten a tetanus shot. I, therefore, can conclude that the hives I had gotten after stopping ADs, were definitely related to AD WD. Just be patient. They’ll go away.

Regarding head pressure…Yes, me, too. I worked on that for months and hopefully can say that that’s pretty much in my past as well. I don’t understand how or why, but these drugs/chemicals do affect muscles. However, within the muscles are trigger points, pressure points, nerve bundles, tender spots, whatever you want to call them. For me, it was those in the scalp/skull, face, neck, and upper back (shoulders and shoulder blades) that were associated with my head pressure. The muscles in the aforementioned areas spasm or tighten like a vice. I would just feel around my head, face, etc. for tender spots—in the skull and face often found in divots —and press on them for a minute or two or roll a couple of tennis balls in a sock between my upper back and a wall. The head pressure would be relieved immediately. It would always come back after a while, but I was persistent in pressing the spots all over my upper body, often three or four times daily. Knock on wood, I haven’t had head pressure for some time now. I still experience only lower left neck and left upper shoulder pain on occasion. Luckily, I found the spots that affect those areas and press on them or massage them. That would be the scalene muscles in the neck and the area just below and along the left collar bone. So I must say that for me, muscle spasms were the cause of my head pressure. I don’t know if that is the case for you or anyone else. Whatever helps, I certainly hope that you and anyone else that suffers from that debilitating symptom finds a coping mechanism and, in turn, quick relief.

Dizziness, well, yes, dizziness… I had dizziness and nausea early on and it just resurfaced a couple of months ago. I have it now sometimes upon getting out of bed in the morning. It’s like having morning sickness, but no, I’m too old for that! It doesn’t last long at all. Sometimes I get dizzy, too, if I change positions too quickly. I recover from it fast though. The only thing I can think is that our inner ears must be affected at times in WD. This is just another symptom that will resolve in time, I'm sure. I must say that I am sorry to hear that you have it most often during the day and hope with all my heart that you recover from it quickly.

You had asked if I get support. With the exception of my husband, yes, everyone in my life is extremely understanding and kind. I hope those that surround you are just as supportive. Remember, you have everyone here on SA, too.

Well, I’ll let your eyes rest for now! You take care of yourself, LRH!! I’ll be thinking of you.

Callie

(aka dupedbydoctors)

[Guest]

On 1/22/2020 at 7:21 AM, JanCarol said:

 

Glenmullen's list is by no means complete or comprehensive.  It is a list of the most common symptoms.

Skin symptoms are extremely common - from severe cystic acne, to dry flaky skin, to itchy skin. . . it, too, is another system which needs to re-regulate.

You say “extremely common”, which i believe must be true if im going through these skin issues during withdrawal, but there doesnt seem to be any mentioning of it on this site, not as much as i would think, where did you get that data from? 

[JanCarol]

Hey RyGuy - 

 

2 hours ago, Ryguy said:

where did you get that data from? 

 

It's spattered here and there over the site.

The people I've seen having trouble are the ones who are on drugs which hit multiple receptors, especially H1 (histamine).  These are the neuroleptics like Seroquel and Zyprexa.  Can also occur with others which are multi-receptor drugs.

But Effexor - hits on SSRI and SNRI and has a cascade which is similar to Seroquel in that, at different doses it has different effects.  Strangely, I haven't heard about this with Pristiq, which is Effexor's granddaughter. (desvenlafaxine) - maybe it's the "time release" preparations which help it a bit?

There's one member in particular, in NZ, who suffered from severe skin distress as he lowered his Effexor dose.  

  

And he's not the only one, just a prominant one.  There was little we could do to soothe his skin as he withdrew, and I haven't checked in with him in awhile to see how he's going. . . 

I hope you see the sun today!

[Rozon1]

@Callie if you don't mind me asking, how is your quality of life now compared to 30 months + ago? Are you better than you were? Could use some words of encouragement! 

[Guest]

53 minutes ago, JanCarol said:

Hey RyGuy - 

 

 

It's spattered here and there over the site.

The people I've seen having trouble are the ones who are on drugs which hit multiple receptors, especially H1 (histamine).  These are the neuroleptics like Seroquel and Zyprexa.  Can also occur with others which are multi-receptor drugs.

But Effexor - hits on SSRI and SNRI and has a cascade which is similar to Seroquel in that, at different doses it has different effects.  Strangely, I haven't heard about this with Pristiq, which is Effexor's granddaughter. (desvenlafaxine) - maybe it's the "time release" preparations which help it a bit?

There's one member in particular, in NZ, who suffered from severe skin distress as he lowered his Effexor dose.  

  

And he's not the only one, just a prominant one.  There was little we could do to soothe his skin as he withdrew, and I haven't checked in with him in awhile to see how he's going. . . 

I hope you see the sun today!

Interesting, yeah mines been bad for the entire 7 years of withdrawal....

[Rozon1]

oops, can a mod delete this post as its a second post? Sorry

[Callie]

Hi, Ryguy!

 

 

14 hours ago, Ryguy said:

You say “extremely common”, which i believe must be true if im going through these skin issues during withdrawal, but there doesnt seem to be any mentioning of it on this site, not as much as i would think

 

You'll find a whole heck of a lot about skin issues on this site that might be helpful to you. Try this:

 

Go to Google (other search engines don't seem to work for this). Key in:   site:survivingantidepressants.org skin

 

I found this is the best way to find specific information here. Good luck with it, and I hope you find something pertinent to your symptoms that will be of help to you.

 

Callie

[Guest]

11 hours ago, Callie said:

Hi, Ryguy!

 

 

 

You'll find a whole heck of a lot about skin issues on this site that might be helpful to you. Try this:

 

Go to Google (other search engines don't seem to work for this). Key in:   site:survivingantidepressants.org skin

 

I found this is the best way to find specific information here. Good luck with it, and I hope you find something pertinent to your symptoms that will be of help to you.

 

Callie

Thanks!!

[Altostrata]

Hello, @Callie, how are you doing?

[Longroadhome]

@Callie

 

hi there it’s Longroadhome 

how are you you haven’t posted in a while and I was wondering how you are doing ? 
Your posts have helped me  over time and I’m really hoping you are continuing to improve x 

[Callie]

Hello, Altostrata and Longroadhome!

 

I am doing well, and thank you for asking! I expect to be fully recovered in a couple more years and so look forward to the day when I can write my success story. Meanwhile, I still work on tolerating daily the few symptoms I have left. The most predominant is tactile hypersensitivity of arms and hands. It used to feel like my sense of touch was magnified a gazillion trillion times but now only about a million times normal, so I'm getting there.

 

I don't post often because I am so busy now catching up on lost time. I was totally non-functional at one point and for quite a while. Today I am just so grateful for the miracle of healing and to be functioning at a normal level.

 

So again, thank you for your concern and best wishes to both of you and to all SA members.

 

Callie

[Longroadhome]

That’s great news Callie and proof everyone heals despite how we come off these drugs and how many we were on. 
 

Happy healing I look forward to reading your success story in the near future . 

[arbor]

All my best to you, @CallieWhat an odyssey!  I hope you're continuing to feel better.

Best wishes,

Arbor

[Callie]

Hello, Arbor!

 

Thank you so much for your kind message!

 

Yes, from being totally home-bound and practically bed-ridden with indescribably horrid neuro sensations and incredibly extreme beyond-belief skin hypersensitivity and paresthesia--just to mention a couple of unrelenting symptoms I struggled with among the dozens.

 

Four years ago I actually believed I was dying from the fast taper off of the drugs. I was in a neurologically destitute state that was beyond pain. If it was pain, it was something I never, ever felt in my body in my entire life. Still can't describe what I was going through. Anyway...Here I am now, practically totally healed.

 

I hope you are doing well, too, Arbor. But if you are still in the thick of it, or anyone else that happens to see this post, please know in the core of your being, without a doubt, you will heal from this. It may take a long time, but this too shall pass.

 

I know how hard that is to believe if you're in the constant grip of WD hell or in a nasty, unrelenting wave. You might even think you're the exception to healing. Hey, no way is that true! And don't compare yourself to others who have healed in lickity-split time. Remember our individual biological differences and the many other variables that were involved, like what drug or combination of drugs you took, how much, how often, how long, etc., etc., etc. The only thing we all have in common, no matter what, is that we will be well again for sure.

 

Breathe, pray when you're suffering so. Please trust, hold on to hope, and have faith! And most of all, have patience.

 

Hang in there!

 

Callie

[Glosmom]

What a lovely post! Thank you, @Callie for coming back and offering hope to all those who are still in need of reassurance!  Best wishes to you! Glosmom

[freeaway]

@Callie I just read through all the hell experience you went through and how you made it through and gave me such tears in my eyes.

You are such a brave person and amazing fighter going through such horrific experience.

I am so sorry you had to go through such thing.

My heart and love goes out to you. 

My prayers for you and your family.

 

 

[Altostrata]

Thank you for that lovely post, @Callie

[arbor]

Thank you so much for this response @Callie!!!!  It is so good of you and means so much to me.  I'm printing out your words and keeping them near me.  Wow, you really have come the distance. 

 

Let's celebrate with "Here comes the sun!"

[arbor]

Because you're feeling better, I added our cheerful "here comes the sun" symbol ☼ to the title of your Intro topic, to show you're recovering.

 

Please continue to let us know how you're doing. I hope you will add your story to our Recovery Success Stories eventually!

[Callie]

Hello to Arbor, Glosmom, Freaway, and Altostrata!

 

Wow! I never expected any comments back really, but they touched me, such wonderfully kind words from all of you. I must say both thank you and you’re welcome! And thank you so much for the ☼!!! Always loved that Beatles song, too, since the day it was released and I heard it on my transistor radio. One of my all-time favorites, and now it has a special meaning for me and will for all SAer’s in time, too. So thank you again!

 

Yes, I will be back when I’m a 100%er to tell my success story. I still have a little more healing to do, but the worst is over. Please know that I’ve been very grateful for this website over the years.

 

Anyway, in the meanwhile—and I can’t say it enough—getting well is a given. Just be patient!

 

Callie

[tsranga]

@Callie  Thank you so much for detailing your withdrawal journey - it has been very useful to me in my withdrawal that is nearing almost 3 years.

 

I hope you don't mind answering a few questions about your symptoms in relation to what I am experiencing -

 

After a lot of observations, it appears that changes in abdominal pressure  triggers most of my symptoms, and it is worse with a drastic temperature change, when I am in rest/digest state, when I over exercise the pelvic region, or when I have gas/bloat from food intolerance. It can also be triggered by spending too much time flat on my belly, or on my back or wearing tight clothes.. (anything that heats up or cools down my pelvis region). This morning, I had worn tighter track pants to go outside and then as I lay down on my belly a little too long, I had chills, temp fluctuations in different parts of the body and high BP (145/90).. fortunately I was able to quickly recover by switching to loose pants and diaphragmatic breathing..

 

This can trigger a flare that can involve additional areas -

GI motility - slow/fast gut movement - when it's hotter, I have more reflux, burping and when it's colder, I have more flatulence, BMs..

Extremities - Temperature variations in different parts of my body, feet and calf paresthesia, hand numbness/dryness, stiff hands and legs, (especially from elbow/knee),  head and sinus pressure, tactile hypersensitivity (it's an exercise in patience and tolerance to switch clothing or shower),

Mental - Blurry vision, brain fog, anxiety, fear, low mood etc.

Sensory hypersensitivity -  light (dusk and shadows in the home can cause agitation for a while), sound (repetitive sounds), smells (strong smells can trigger a fight/flight response)

 

I can't do much about the weather/temperature shifts, and the drafts of cool/hot air from HVAC systems, or  ambient air temperature shifts based on season changes, but I am trying to adapt the best I can under the circumstances. This means trying to control the internal temperature as much as possible to avoid extreme shifts from outdoor/indoor, AM/PM, wearing just one type of fabric, one type of dress for the warmer and colder months, and one for daytime / nightime.  But I find that the hypersensitivity can still get me sometimes. 

 

Questions about hypersensitivity - 

1. Did you have issues switching fabrics (cotton to polyester), switching between shorts and pants, socks / no socks, flannel to cotton bedsheets ? 

It takes me a lot of courage and tolerance to make the switch as I get into a fight/flight response because of the hypersensitivity.  I have to be extremely careful about how much heat / cold is in play based on ambient air temperature, activity etc, as things escalate pretty quickly with paresthesia, hot flushes or chills.  

2. How did you narrow down the choice of fabric, coverings, dresses to minimize the hypersensitivity?   

I try to wear the same fabric for the same periods of day or season, but the most challenging times are when the daytime and nighttime temperatures vary dramatically, or when there is a cold or hot spell in the middle of summer/winter.  I find that I do much better dressing up/down when I am outdoors dealing with the heat/cold versus indoors, and the wakeup and bedtimes are the most challenging, due to the variation in heat/cold between extremities and core, and also because that's when BP and HR variations are higher until the body settles down for the day or night. 

3. How frequent were your flares from hypersensitivity? 

In my case, it appears to be mainly when there is a drastic change in weather (dip/spike in temp or humidity), and it takes a couple of days to stabilize/adapt.

 

[Callie]

Hello, tsranga,

 

I want you to know that I saw your post earlier this week, yet I have not been able to devote the time and effort to responding to your questions as thoughtfully as I would like and in a way you deserve. Please forgive me.

 

My elderly mother-in-law is gravely ill, and I have spent just about every waking moment over the last 2 weeks helping my husband attend to her needs. She will be placed in hospice today, so please know that by no means have I carelessly ignored you. Your concerns have been on my mind since I saw your post, and I only regret that I didn't drop a quick note like this earlier in the week. So please, again, forgive me.

 

I will definitely get back to you and answer your questions as best as I can. In the meanwhile, please know that I do care very much about you; so hang in there!!!

 

Callie