New 12-18 Month Buddy Group

Dear Buddies,

 

I'm hoping we can form a tight buddy group of support for those who are 12-18 months out to give and receive reassurance and encouragement during these tough times we thought would be over by now.

 

I am currently experiencing chemical storms in my brain that cause high anxiety and panic.  I get cortisol surges, heart racing, heart palps, agoraphobia, body vibrations and chills.  I have no appetite, have lost 40 lbs and I continue to lose weight, no matter how much I eat.  I feel so sick all the time that I spend 95% of my time some days in bed clutching my pillow in the fetal position.

 

I live alone and I'm frightened to death that I won't heal.  I just don't see an end in sight.

 

Are there any battle fatigued buddies who want to get together for mutual support, share information, console each other and, basically, stick closely together for the next six months or so until this hopefully ends? 

 

Love, Sofa

I've pulled over my blog below, written when I felt better one day, which highlights these past twelve months of my withdrawal journey.  Would anyone like to share theirs?

 

I am 12 months off all meds and haven't had a window yet.  I've noticed some improvements over the past year, especially compared to how I was feeling during months 1-8.  I used to have 16 symptoms.  I am now down to 5.

 

I was in tolerance for a year (almost all of 2014) with 24/7 nausea before jumping CT.  Three ER visits, three endoscopies.  I was diagnosed with one pinprick ulcer, then no ulcers, then 2 surface ulcers.  Put on PPIs and Sucralfate.  All the doctors I saw told me the opiates I was taking for my spinal stenosis pain were causing my nausea.  I lost 40 lbs. in 6 months.  I checked myself into a detox facility August 1, 2014 and was CT'd off the opiates.  Came home after 2 weeks still nauseous and unable to eat.  I had severe constipation to boot which had been going on for two years.

 

The only other meds I was taking were 900 mg Gabapentin for back pain and 4mg Zofran for nausea.  My pain doc told me to stop taking the Gabapentin.  The next day I ended up in the ER a fourth time so out of it I was drooling, falling over and incoherent.  They did an ultrasound which revealed 2 gallstones.  The doctor at the ER told me to reinstate the Gabapentin. 

 

The doctor who would perform my gallbladder surgery prescribed Ativan, which I took for three months prior to surgery because I was so frail and the Ativan relaxed me enough to eat a little.  I went for gallbladder surgery September 2, 2014 and coded on the operating table.  They saved my life, but didn't remove my gallbladder.  I developed a huge liver biloma due to the surgeon tearing a liver bile duct trying to resuscitate me and I had to have a drain inserted.  Two months later I had my gallbladder removed--no gallstones were found.  I came home after three days and I was still nauseous 24/7.

 

I was still so sick.  My family and I thought it had to be the Gabapentin.  We had exhausted all the other possibilities.  I was on 900mg and I kept cutting down the Gabapentin, 100 mg a day.  I hadn't found this site or anything on the internet about how slow you were supposed to taper and my pain doc said he never tapered any of his patients.  Gabapentin didn't need to be tapered he said.  I was sick taking the drug, I was sick tapering the drug, so my family and I decided I should just stop taking it. 

 

Welcome to withdrawal hell, Judy.  Come on in and set a spell.  That's if you can sit at all with the roaring tinnitus, akathisia, cortisol/adrenaline surging, anxiety, panic attacks, looping intrusive thoughts that come out of Satan's butthole, back pain, nausea, insomnia, horror show nightmares, vertigo, constant pacing, DP/DR, constipation, anal spasms, gut pain, drunk/drugged LSD tripping, cog fog, internal vibrations like I was laying on a vibrating bed, etc.  It was like being on a cheap carnival ride after you've eaten a whole spool of pink cotton candy. 

 

The first three months was a steady stream of life on Elm Street with Freddy Krueger leading the parade.  A real sh*t show X 1000.  The next five months, if you can believe it, were even worse!  Every symptom seemed to take on a life of its own.  I was helpless,  my white knuckles hanging onto the rollercoaster roll bar with no seat belt doing upside down loop-de-loops all day long.

 

At 3 months out, the cog fog and vertigo went away.  And here's the real kicker.  My back pain, which was the reason I was prescribed all these meds in the first place, COMPLETELY GONE.  It turns out that the opiates and the Gabapentin were CAUSING my back pain.  The spinal fusion surgery I had in September 2013 was actually a stunning success.  I have not had any back pain since.

 

At 4 months out, the 24/7 nausea went away.  Then I started taking 200mg of magnesium at night.  The constipation went away.  I still had some gut issues, but these two babies were pure hell.

 

At 7.5 months out, I was walking in my backyard in the wee hours--walking, not pacing frantically.  Oh my God, the akathisia is gone!  I started bawling.  I rolled back and forth on the carpet, I howled at the moon.  I got down on my knees and prayed, thanking God, Jesus, the Holy Spirit, all my dead relatives, Elvis, Mother Teresa, my guardian angel, Ghandi, Frank Sinatra, Lassie, Buddha, my spirit guide (yes, I've read up on and tried everything on this journey) and anyone else I could think of who may have had something to do with lifting this horrible symptom from my body and brain.  My dirty bathrobe, caked with oatmeal and bits of fried egg, was now soaked with my tears.  I could lay on my back in bed for more than 5 minutes without popping back up to run outside and pace my backyard in a panic.

 

At 8.5 months out, I was "strolling" in my backyard in the wee hour darkness and I noticed my roaring pulsatile tinnitus and internal head whooshing was quieter.  It was not like getting tossed around in a washing machine of crashing waves.  It was more like what you hear when you put a conch shell up to your ear, but with a resuscitator machine attached to it (my heartbeat).  The whooshing was lighter, like a whisper of what it used to be.  I began to bawl again and thank a litany of other dead people I forgot to mention when the akathisia went away the month before.  I knew in my heart who was really responsible, but I'll leave that for the faith board.

 

At 9.5 months out, all my gut issues went away.  I get occasional heartburn like everybody does once in awhile, I pop a couple of Tums 1000 and I get immediate relief.  I still get the anal spasm thingie once a month if I have a lower intestine gas bubble, but I fart and I'm good to go.

 

At 10.5 months out, the insomnia got better.  I always get at least 5 hours of sleep most nights.  Sometimes I still have trouble getting to sleep.  I used to take half a Unisom doxy about once or twice a week for a couple of months, when I could not fall asleep due to looping intrusive thoughts, but I read somewhere that it may cause Alzheimer's or some other dementia, so I quit, since I don't need that crap to complicate or interrupt my lovely withdrawal adventure.

 

At 11.5 months out, the symptoms started alternating, morphing, jumping around a bit.  I started having some pretty gnarly waves that would last a week.  A real Wheel of Misfortune potpourri.  A new symptom started too.  Fever-like chills coursing through my body that last about an hour.  Weird.  The internal vibrating bed symptom only happens once a month and goes away in about 15 seconds, so I'm not counting it.  I also get occasional little squealies of tinnitus, but they go away in 5 seconds, so I don't count them either.

 

As of November 8, 2015, at 12 months out, I am left with the following symptoms:  4am cortisol adrenaline glutamate (or whatever you want to call it) alarm clock, racing heart beat, heart palps, anxiety and fear, overstimulation (still can't watch TV or listen to music), intrusive thoughts, hyper-sensitivity to good and bad stressors, drugged/drunk veil that drapes me.  I guess that's more than five, but who's counting?

 

I know Who is going to pull me out of this one day.  I will be forever grateful when that day arrives and, before that day comes, I'll keep reminding myself of many things, like my beautiful family, a roof over my head, my beloved pug Opie and my health, for which I am already grateful.

 

You know we will all heal. It just takes a long time. We will heal and this will be a foggy memory (no, not withdrawal foggy memory).  Until then, we will continue to spin the Wheel of Misfortune, we will pace and rock and cry, we will put heat and ice on what hurts, we will have intrusive thoughts that we will never heal, we will be constipated (magnesium set me free), we will have diarrhea (bananas and brown rice and protein are good pluggers), we will get revved up using our computers and cell phones, we will run to the doctors when new health issues blow our minds (because, of course, we are dying), we will try to distract, breathe deeply, do yoga, meditate and exercise and nothing will work, we will have nightmares that would make Stephen King cringe, we will TRY EVERYTHING but, at the end of the day, we will rest up for the onslaught of tomorrow because nothing will heal us but TIME.

 

I hope others will share their journey over this past year.  What symptoms have left, what's improved, new symptoms that have popped in, things you did that helped, things you did that you wish you hadn't done, words of wisdom, words of sympathy, words of humor (yeah the last one is hard, I know, nothing funny about this).

 

Please join me.  I need company.

 

Love and healing energy to everyone, Sofa

Are there any buddies out there who can talk about how much they improved during or after the first year?

I'm already 3.5+ years out, Sofa, but just wanted to say that I read your post and found it wonderfully well written (gives me away as a teacher, doesn't it?) and the humor was perfect!

 

I don't remember much about my first year of healing.  Most of the physical symptoms went away within a year except for fatigue.  I do remember seeing the first noticeable healing around 15-18 months.  I could feel it happening, whereas in the first year I could only see progress by looking waaaaaay back.

 

Chal

Challis,

 

Thank you so much for your encouragement.  I am really suffering with the chemical anxiety now and, like you, most of my physical symptoms have gone away this past year too.  Boy, this chemical anxiety FEELS really physical though, doesn't it?  I can't catch my breath with the crushing anxiety.

 

Thanks for stopping by.  I hope I wasn't so long-winded that I scared people away.

 

Love, Sofa

Hi Sofa,

you haven't scared me away. I agree with Challis that your writing is wonderfully creative.

I'm fourteen months off and I've seen some improvement--my gut problems persist,

along with other symptoms.

Hell of a journey, eh?

Be back tomorrow--

take care of you,

Iggy 

Thanks for stopping by, Iggy.  Please come back soon when you have the time to chat.  Yes, this journey is not for the faint of heart.  I never thought of myself as a strong person.  I feel like a weak mess now.  Hopefully, I look back someday and give myself credit for enduring all this.

 

Love, Sofa

Hi Sofa

I am almost 16months off.

 

Have chemical anxiety, chest pain, palps, and fast heart rate as my worst symptoms.

 

I have just stopped the beta blocker so think this is why my resting heart rate has decided to increase.. usually around 60-64 Tonight it is staying around 85... doesn't feel good... lots of head pressure...

 

Hope we are all through with this soon

Nomne

 

 

Oh my gosh, nomne, you don't know how good you made me feel!  We have the exact same symptoms!  Oh thank you thank you for telling me this!

 

This is what I have suffered from every single day since I jumped a year ago.  I got a doctor to give me a beta blocker a month ago, but my blood pressure is so low, I only too a half a pill and haven't taken one since.

 

My heart rate is always in the 80s.  I can't exercise.  I'm bedridden most of the day.  I am tempted to try the bb again to try to get my heart rate down.

 

Does all this anxiety feel really chemical to you?  Do you have Windows, or days where you're not so amped up?  Did you improve somewhat after the one year mark?

 

Sorry for all the questions.  Can you tell I'm clinging onto you for dear life?  Ha!

 

Love you, Sofa

Nomne,

 

We also took benzos for about the same amount of time too.  I was on Gabapentin for 3 years.  The Ativan was prescribed in the last 3 months of those 3 years.  I don't know which is causing me the withdrawal because I CT'd both at the same time.

 

I hope we see the end of this withdrawal soon.

 

Love, Sofa

Also, do you get relief in the evening?  I most always do.  How is your sleep?

Sofa,

I had good days bad days till month 11 then had one really great month.. thought I was done with this then fell into the pits of hell and it has taken most of the last four months to claw my way back..

 

Most of that 4 months was spent in bed, almost none of the first 11were...

 

Right at my one year mark I  had some huge stresses... death  illness etc...

 

I tried the propranolol for palps, was having a hundred or two a day... it  was terrible for me.. a buddy told me about atenolol and I tried it and liked it, the palps are now very very few.. ... I think the atenolol may make me nervous... could also just be withdrawal....so decided a couple days ago to stop it and see how I am.... hope my hr settles soon. 

 

With both the propranolol and atenolol I could only take a quarter of a pill.. atenolol an eighth (3mg) took my hr right down... if I took more it would slow my hr so much to compensate my blood pressure would skyrocket and give me brutal chest pain.. took three er visits to figure out what was happening..

 

I started hiking again 10days ago and have gone every day since, I don't go far, my heart rate is usually in the 130s while hiking but I think after so much time in bed it just has to readjust to being up..... of course I have no idea if that's right....

 

I should have listed health fears as one of my last symptoms...I have been on the verge of death a thousand times

 

We will all get through this,  one day at a time

Nomne

Yes, evenings are so much better, mornings are real rough

Nomne

Your first 11 months sounded manageable.  So sorry your pattern changed on you and you had those additional stressors.  Isn't it weird that all our recovery patterns are so different?  My symptoms have been over the top every day for a year.  It makes it hard to imagine that my body can take much more of this.

Sofa as you know our timing is the same and our symptoms are the same, the anxiety feels SO chemical to me, there are no anxious thoughts but my body is just permanently in that state of shock comparable to when you've just been in a car accident?

 

Evenings used to be a bit easier but the last few weeks it's just been hell 24/7, even the sound of someone closing a door make my body jump 

 

As you know i wrote the below in the 18 month + thread last night but i thought i'd post it here in your new group in case anyone wants to add any of their thoughts

 

Looking forward to helping each other through this next period, need to let go of the disappointment of not feeling any better at 12 months, and try and focus on the fact that lots of people say they saw healing happen between 12-18 months

 

***

 

Hey just reached my one year anniversary but seen the 12-18 month group is no more? Which was a bit of an anti-climax LOL

 

Is it ok to post in here? Just like the day i turned 6 months, i'm finding today extremely depressing because i had such high hopes for being a year off this poison.

 

A little bit about me, i realise now that i definitely kindled, i stopped and started so many times over the two years because my doctor told me i could take Xanax as and when so that's what i did, sometimes i took it every day for a few weeks then i wouldn't take it for a few weeks, i realise now i was literally in tolerance/withdrawal the whole time not only because of when i took it but because i also refused to up my dosage.

 

I have been completely housebound for a year now, literally the day i went cold turkey my life just fell apart. I remember a few days after i stopped i tried to watch TV and my nervous system just couldnt handle it, and i'm still like that 12 months off I honestly don't know how i've got myself through these 12 months without even being able to have TV as a distraction, i'll tell you how a load of spa music!?!

 

I am so exhausted the whole time that i can't even go for a walk. I've made myself a few times over the last year just to try and stay sane, but each time i crash hard for doing it. It's not agoraphobia, it's not that i'm afraid of going for a walk, there's nothing i'd like to do more that go for a nice walk, but literally my withdrawal symptoms stop me from being able to

 

I guess it would be amazing to hear from someone who was as bad as i am at 12 months but then they saw some improvement. I mean could anyone else still not even watch TV at 12 months? I'm not even focused on making a full recovery i just want to be semi-functional again for my family.

 

I am yet to experience any windows, i'm either at a 5-10% baseline or i'm in a nasty wave, the wave i'm in at the moment is quite possibly my worst one yet, started about a week ago, just in time for my one year anniversary

 

- Toxic Energy

- Insomnia

- Inner Vibrations

- Benzo Belly

- Anxiety

- Nightmares

- Leg Pains

 

Hope to hear back from some of you

 

Keep up the good fight

Yes, Stuck, we are definitely on a similar journey with this withdrawal.  This chemical anxiety is the pits.  Yesterday I was in bed all day clutching my pillow, under the covers.  Completely toxified.  Today it's more of the same.

 

I think the main reason I get so discouraged is that, unlike many people, symptoms don't change up throughout the day, or change day to day.  It makes me feel "stuck."  I used to talk to myself all day, trying to convince myself I was getting better.  So much time has passed now with the same relentless symptoms, I've lost hope.  That's when it gets really bad.

 

Like you said, though, many people see improvements 12-18 months out.  Let's just stick together and breathe through each day as best we can.  Maybe we can focus on a few things that have gotten a tiny bit better.  There must be something that's improved a little if we are indeed healing.

 

Love, Sofa

In terms of improvement this is the best i can do i'm afraid

 

- used to spend all day in bed, now i spend my day mixed between my bedroom and sitting on the sofa in the lounge, can't wait until i can watch TV!?!?!?! 

- on a really good day at night i can now walk to the end of the garden, but even that requires some pushing through, i don't actually feel like i have the real energy needed to do it, legs are like jelly etc. but i don't feel worse for doing it so i see that as a good enough reason to make myself do it.

- my stool has improved a lot, for months i never had one solid stool where as now they're always solid, sorry i know we've only just met

- i can listen to easy listening music like chill out music as long as the drums aren't too loud!

 

Nomne,

 

I think the reason we get relief at night is due to the over-firing of too much glutamate and not enough gaba during the day that, eventually, by evening time nears the end of the gaba/glutamate cycle.  Does that make sense?  The fact that it picks up again at 4am and the cycle just restarts seems to validate my theory.

 

Stuck,

 

I know the improvements are almost imperceptible, which is discouraging.  I have a theory about that too.  (I'm chock full of theories due to my constant ruminating thoughts.  Grrr.)  As I read different threads on BB, I see people suffering terribly with many excruciating symptoms I don't have.  I have tossed around the idea in my head that many of these people experience Windows as some of their many intense symptoms decrease or disappear.  Maybe that's why I don't feel windows, per se, because I don't have as many symptoms to begin with as others.  What do you think?

I'm certainly not downplaying the excruciating symptoms we have.  I'm just trying to figure out why no windows.

I'd like to think if either of us had a window we'd know about it! People talk about them as if you actually feel like your old self? I've never had anything close to that. I consider my windows any days i don't have the horrible 'toxic energy' i still feel like an absolute basket case but it's still amazing not to have all that cortisol/adrenaline or whatever rushing around my body!

 

I have read of people on here who didn't have any windows but still saw significant healing between 12-18 months, pray that be our destiny too!

I pray every day, Stuck.  Whenever you run across stories of people who never had windows and healed, could you post the link here?  I don't know how to post links.  Very link-impaired, I guess.  Ha!

Sofa,

 

I don't know anything about gaba or glutamate  or that stuff.. just know since 12 months my day starts around 4:30. And mornings are rough, it is almost 10 here and I am in bed in tears ....hopefully by four or five it will lessen

 

When I had Windows ..before a year off, I felt 100% normal..they usually lasted for a week or so..

 

I have seen improvements... no longer have pain in left shoulder and neck, no longer have needles sticking me all over, shakes are gone, jelly legs are mostly gone.

 

If I could get this heart rate thing under control I would feel so much better.. of course did you ever notice it's always something... I thought if the palps left I would. Be good .. they did but were replaced with the fast hr..I can remember thinking if I could just get rid of the shoulder pain... that left but was replaced with other stuff....

 

Someday this will all end.. it has to

Nomne

Oh my gosh, Nomne, I do the exact same thing!  The "if only X would leave, I'd be home free..."

 

Then "X" would leave and I found myself focusing on another debilitating symptom and I'd say the same "if only" mantra again.  This has gone on for twelve months and I guess when you start out with 20 symptoms, even if one falls off each month, you have a ways to go. 

 

It's so interesting that you felt pretty normal the first 11 months, then got hit pretty hard.  We're all so different, as are our diverse healing patterns.  They are all over the place!

 

We will heal in these next few months, Nomne.  If not fully healed, we will be functional.

 

Love, Sofa

How is everyone doing today?

 

I took a new probiotic and it sent me over the moon with racing heartbeat over 100 and low blood sugar of 72.  I took 1/4 pill of beta blocker.  It brought my heart rate down to 81.  I can never seem to get it much below that.  I ate some cottage cheese with pineapple and my glucose is now safely at 84.  Man oh man.  No more supplements for me.  I was doing well on a different probiotic, but tried a new one and Bam!  I should reorder the other probiotic, but now I'm chicken.

 

Oh well, I hope everyone is doing well. 

 

Sofa

Definitely having my worst wave yet at exactly a year off, didn't think it could get worse, currently accompanied by some kind of throat/ear infection, doc wanted to put me on anti biotics but I didn't want to take them as I've heard they can make withdrawal worse.

 

Chemical anxiety is just RELENTLESS, no let up at all, it's just there permanently all night and day waking up every day at 4am and then can't get back to sleep and too revved up to nap during the day.

 

The WORST thing I can do believe it or not is try to meditate, OMG trying to just sit with this chemical anxiety at the moment is like taking speed and then trying to relax HORRENDOUS

 

Sorry just needed to get all that off my chest, I'm a 35 year old man who used to do mixed martial arts for fun and now I'm spending most of the day in bed hugging a pillow