thelegend: hoping to get there

[thelegend]

Hey guys, I really just don’t know what to do anymore. I am more than 7 months into a hold with really no improvement. All symptoms are back and bad as ever, I get no windows (even my evenings aren’t great anymore). I feel like this torture is all just too much, I am feeling really hopeless!

[thelegend]

@brassmonkey - does everyone really stabilize eventually? Feels like I am just not making any progress!

[Gem92]

Hello. I too am waiting for improvement on a hold. I hope you start seeing some windows soon! 

[Lynnardgirl]

It’s tough, my anxiety is back and worse than before! I guess all we can do is hurry up and wait! 
So sorry thelegend you are not getting any long windows hopefully soon

[Len189]

1 hour ago, thelegend said:

@brassmonkey - does everyone really stabilize eventually? Feels like I am just not making any progress!

 

In the Ashton Manual for benzo withdrawal it says "Cold turkey is the largest cut of all and the shock caused by such an abrupt withdrawal is so severe that even after resumption of your drug at the previous dose, it may take weeks or months to "stabilise", and in some cases, you may never stabilise from a cold turkey withdrawal until after you have completed your taper." (https://www.benzo.org.uk/FAQ1.1.htm "15. OK, IF I AM GOING TO TAPER MY BENZODIAZEPINE, HOW SHOULD I STRUCTURE THE TAPER?"). Maybe the same goes for SSRIs? That if the shock to the CNS is sufficiently big, a reinstatement does not always result in stability over time?

 

Just a thought, hope I haven't misunderstood something. Feel free to delete this post if so.

 

So sorry to hear about your struggles. I really hope the reinstatement works out eventually!

[Giulietta]

4 hours ago, thelegend said:

Hey guys, I really just don’t know what to do anymore. I am more than 7 months into a hold with really no improvement. All symptoms are back and bad as ever, I get no windows (even my evenings aren’t great anymore). I feel like this torture is all just too much, I am feeling really hopeless!

 

Hello TL,

 

It is unfair and cruel, what has happened to us. I have been at this for 12 months - and my gosh - I am still awaiting a window.  The best I can get is one or two days over the past more than a month. Are you tracking your decent days (how I look at them) vs the days that have a lot of symptoms that affect your days?

 

If so, do you bother to look at them? I do not. I find the prospect an unpleasant one.

 

I write mine down in a log - every day. I am really happy when I can write 'decent day!' - and not so pleased when I look at the litany of symptoms.

 

Hang in there,

Giuilietta

[RachelSusan]

TL,

 

Sorry to hear it is so bad.  It takes so long for this stuff to settle it really is shocking.  I hope that you get some relief soon.

 

Warm wishes.

[thelegend]

Anyone with any ideas as to why when I wake in the morning at 4am I have ZERO anxiety, like totally and completely normal? Then when I wake at 7 anxiety is crazy high and coursing through me? It is really the strangest thing!

[RachelSusan]

I didn't write this,  I googled it, but maybe this might be the reason?  If not, maybe someone else has a better answer???

 

Cortisol spike in the morning

• In general, cortisol levels are highest in the morning and they generally taper off throughout the day.

ALSO THIS:

 (on Wikipedia)

Shortly after awakening, a sharp 38–75% (average 50%) increase occurs in the blood level of cortisol in about 77%^[2] of healthy people of all ages.^[3] The average level of salivary cortisol upon waking is roughly 15 nmol/l; 30 minutes later it may be 23 nmol/l, though there are wide variations.^[2] The cortisol awakening response reaches a maximum approximately 30 minutes after awakening though it may still be heightened by 34% an hour after waking.^[2] The pattern of this response to waking is relatively stable for any individual.^[2][4]Twin studies show its pattern is largely genetically determined since there is a heritability of 0.40 for the mean cortisol increase after awakening and 0.48 for the area under the cortisol rise curve.^[5]

Normally, the highest cortisol secretion happens in the second half of the night with peak cortisol production occurring in the early morning. Following this, cortisol levels decline throughout the day with lowest levels during the first half of the night.^[6] Cortisol awakening response is independent of this circadian variation in HPA axis activity; it is superimposed upon the daily rhythm of HPA axis activity; and it seems to be linked specifically to the event of awakening.^[7]

Cortisol awakening response provides an easy measure of the reactivity capacity of the HPA axis.^[8]

Sleep factors

• Waking up earlier in the morning increases the response.^[9]

 

[Giulietta]

Hello there,

 

5 hours ago, thelegend said:

Anyone with any ideas as to why when I wake in the morning at 4am I have ZERO anxiety, like totally and completely normal? Then when I wake at 7 anxiety is crazy high and coursing through me?

 

This is known as a cortisol spike - many of us wake up at 4 a.m., or 3 a.m.  I may wake up with anxiety and my body temperature has risen - we are I think 'hyper responders' .

 

4 hours ago, RachelSusan said:

Normally, the highest cortisol secretion happens in the second half of the night with peak cortisol production occurring in the early morning

 

Thank you for posting.  I don't know why waking up at 4 a.m. is inconsistent though.

 

Giuliietta

 

[thelegend]

Good info @RachelSusan and @Guilietta. It is the weirdest thing. I know what time it is based on the anxiety I feel when I wake. If there is none, I know it is earlier than say 5 or 5:30. If the anxiety if there I know it is probably 6 or later. So weird! Had a decent day yesterday after a frustrating morning. Today has been pretty tough as well. Still waiting for a full day window.

[thelegend]

22 hours ago, Len189 said:

 

In the Ashton Manual for benzo withdrawal it says "Cold turkey is the largest cut of all and the shock caused by such an abrupt withdrawal is so severe that even after resumption of your drug at the previous dose, it may take weeks or months to "stabilise", and in some cases, you may never stabilise from a cold turkey withdrawal until after you have completed your taper." (https://www.benzo.org.uk/FAQ1.1.htm "15. OK, IF I AM GOING TO TAPER MY BENZODIAZEPINE, HOW SHOULD I STRUCTURE THE TAPER?"). Maybe the same goes for SSRIs? That if the shock to the CNS is sufficiently big, a reinstatement does not always result in stability over time?

 

Just a thought, hope I haven't misunderstood something. Feel free to delete this post if so.

 

So sorry to hear about your struggles. I really hope the reinstatement works out eventually!

thanks for your post, does this mean I will never stabilize? Not sure I should really consider a taper while so unstable, does it happen where some people don’t stabilize?

[Giulietta]

50 minutes ago, thelegend said:

and in some cases, you may never stabilise from a cold turkey withdrawal until after you have completed your taper."

 

50 minutes ago, thelegend said:

Maybe the same goes for SSRIs? That if the shock to the CNS is sufficiently big, a reinstatement does not always result in stability over time?

 

Hello @Len189 and @thelegend I don't believe this is the case that we will recover. I believe that after a CT WD for an SNRI or SSRI it can take well over a year or more than 2.    I have read someplace that if one is also taking a benzo - stablization may take longer.

 

Given our CT's - I have no idea what to say for any of us.   There is no undoing this. We didn't do this because we wanted to make ourselves miserable. some were advised by medical professionals.

 

@thelegend who is your mod?

 

[thelegend]

@Guilietta, I have been getting comments from @brassmonkeyand @Gridley I believe. Not sure who are actually mods that I have been talking to.

[Giulietta]

My assumption - sorry - I work most closely with Moderator Gridley so I assumed you may work with  one moderator most of the time.

 

 

 

 

 

 

 

[Gridley]

1 hour ago, thelegend said:

does this mean I will never stabilize? Not sure I should really consider a taper while so unstable, does it happen where some people don’t stabilize?

It is very rare that someone doesn't;t stabilize eventually.  It can take a long time but it will happen.

 

If you are very unstable you should hold where you are and not taper.

[RachelSusan]

I always had Cortisol Spikes starting about 3 a.m. that would continuously wake me up, however and this is a BIG however, at 6 a.m. I always got slammed with the biggest spikes ever.  It was brutal waking up into this crap. I took knew what time it was whan I got that huge surge that jolted me awake. It did eventually go away. I really feel for you Legend, but I think with time, if you continue to hold, it will work it's self out.

[Giulietta]

1 hour ago, RachelSusan said:

It was brutal waking up into this crap. I took knew what time it was whan I got that huge surge that jolted me awake

 

I'm laughing. It is so true. It is a brutal wake up and you know what time it is....usually. 😂

[thelegend]

Thanks @RachelSusan @Gridley and @Guilietta. It is good to hear that it really does get better when we feel it is never ending. Not sure if it is battle fatigue or I am just getting worse (hoping for the former) but I am finding myself being a little more apt to avoid things (like work). Again I am hoping this is just the toll of the last two years weighting on me and not a sign that I am just getting worse and worse. Hoping for an evening window as I got one two nights ago, but not last night.

[Giulietta]

7 minutes ago, thelegend said:

Again I am hoping this is just the toll of the last two years weighting on me and not a sign that I am just getting worse and worse. Hoping for an evening window as I got one two nights ago, but not last night.

 

Hi again!

 

Does evening window mean a decent's night sleep? Or that you don't wake up with a cortisol shock (or both)?

 

I hope you have a window as well.  I slept like a log last night but awoke to a cortisol spike this morning if that is any consolation.

 

37 minutes ago, thelegend said:

battle fatigue

 

This is an apt expression - we are winning battles - on the road to winning the war. Like the allies in WW2, they weren't sure when they would win but they were sure they would prevail.

 

G

[thelegend]

1 hour ago, Guilietta said:

 

Does evening window mean a decent's night sleep? Or that you don't wake up with a cortisol shock (or both)?

I pretty much always wake to a cortisol shock (except for Saturdays and vacations). Evening window in that often times the anxiety will totally shut off and I will feel like my normal self for a few hours  (sometimes starting at like 4-5PM sometimes not til like 9-10PM) Two nights ago it was great, shut off at like 4PM, last night I got almost no relief, until maybe at like 11 right before bed. Already 3:30 and no end in sight for anxiety...not looking too good!

[Giulietta]

15 minutes ago, thelegend said:

 (sometimes starting at like 4-5PM sometimes not til like 9-10PM) Two nights ago it was great, shut off at like 4PM, last night I got almost no relief, until maybe at like 11 right before bed. Already 3:30 and no end in sight for anxiety...not looking too good!

 

Really intersting and sorry to hear this. I had similar experience (and still do but not all the time) - I may have a cortisol spike in the morning, it subsided - then like a light went on - anxiety and loud tinnitis started promptly at 3 or 4 p.m.  It may subside by bed time.

 

Have you tried a weighted blanket? They are an enormous anxiety/stress reliever. Since I started sleeping with one, my sleep improved.  They can be warm. You can also use them if you are sitting watching TV, at a desk, etc.  There is a brand on amazon -YnL something like that. Ask if you want more info.

 

Do you have a routine at night where you relax, etc.?

 

I have had another day of anxiety - some responding to big life changes and trouble coping - and some because of a heightened WD anxiety response. Thinking of you. 

 

[thelegend]

12 minutes ago, Guilietta said:

Have you tried a weighted blanket? They are an enormous anxiety/stress reliever. Since I started sleeping with one, my sleep improved.  They can be warm. You can also use them if you are sitting watching TV, at a desk, etc.  There is a brand on amazon -YnL something like that. Ask if you want more info.

 

Do you have a routine at night where you relax, etc.?

 

I have had another day of anxiety - some responding to big life changes and trouble coping - and some because of a heightened WD anxiety response. Thinking of you. 

 

my wife had a weighted blanket, I haven’t ever really used it. Sleep is actually the one thing that is really good, I usually am asleep by 11 and if I wake in the night I have ZERO anxiety, almost enjoy being awoken in the night due to this. Then when about 6AM rolls around the cortisol spike happens and then I pretty much have extreme anxiety from that point on in my day until then next night. 
 

[RachelSusan]

2 hours ago, Guilietta said:

they weren't sure when they would win but they were sure they would prevail.

Hi both Guilietta and Legend. I really like what Guiletta wrote, which is quoted above. It's awesome. I have to be truthful and admit that during my worst days I was convinced that I was stuck the way I was. I was convinced there was no recovery. I just felt too awful. With time and a few little windows, my litter glimmers of  hope, I was able to change my thinking and eventually I knew I would prevail.  Going through the darkest hour is so very difficult. So very difficult to believe there is something better.  But there is!!!!!!!!! Truly there is. I am leading close to a normal life these days. It will happen for you. 

[Giulietta]

27 minutes ago, RachelSusan said:

I am leading close to a normal life these days. It will happen for you. 

 

This is great news. I hope it stays this way for you. Legend and I will get there sooner rather than later I hope. 

 

You have made great progress down to 2 mg (on Pearl Harbor Day!). How long did your (prolonged) WD last?  I see you like me take a high dose of gabapentin. I hope this helps with your anxiety.

 

[thelegend]

@RachelSusan that is so good to hear that there is something better...I needed that tonight. I have pretty much stopped having evening windows...that was the one hope I had to hang onto to get through the day. Tonight it seems like it isn’t going to happen, more often than not it doesn’t the last week or so...not sure why that has changed but it really sucks!

[thelegend]

So...just came down with the stomach flu. I tried to time my nighttime Zyprexa right after throwing up so it would be likely to have a few hours to settle. Any standard as to what you do if you vomit up a dose?

[thelegend]

Well I made it a little over 2 hours after my dose. What do you guys think, should I retake my Zyprexa dose?!?

[sunnysideup69]

4 minutes ago, thelegend said:

Well I made it a little over 2 hours after my dose. What do you guys think, should I retake my Zyprexa dose?!?

I'm sure a moderator would be along to help you soon. It's a good question, have wondered about it myself. If I vomited 2 hours after dosing, personally I wouldn't redose, but that's just personal opinion, I'd be too nervous. I'd probably just cope with any bumps that might come from not having digested all of my dose. pS wishing you better

[Giulietta]

9 hours ago, thelegend said:

Any standard as to what you do if you vomit up a dose?

 

7 hours ago, sunnysideup69 said:

If I vomited 2 hours after dosing, personally I wouldn't redose, but that's just personal opinion,

 

7 hours ago, sunnysideup69 said:

I'm sure a moderator would be along to help you soon.

 

Hello Legend,

 

Really sorry about vomiting and now being in a quandary about what to do.  A moderator will be able to help.

 

With epilepsy meds (my only case) I call the MD. Depending on the cause (double dose/toxic level - which is usually the cause) - I don't redose. I hold off for a few hours and take a partial dose - or just skip the dose I vomited. This is for gabapentin.

 

Good luck

 

G.

 

 

[thelegend]

Wel I didn’t redose, hoping that doesn’t throw me off. I find myself so worried about everything. Like I had to take some Tylenol for body aches and it really bothered me that maybe it would ramp up symptoms. Oh well, some day it will be better...right?

[Gridley]

25 minutes ago, thelegend said:

hoping that doesn’t throw me off.

Missed doses are a common event and any problem from the missed dose generally resolves fairly quickly.  That is to say, no big deal.

 

Everyone is different, but I find I can't take Paracetamol.  It increases my symptoms.  Our systems are so sensitized in WD that they can react strongly to these drugs.

 

Yes, it will get better.

[Edmunds]

With my psych's advice, I tapered way too fast off Effexor/venlafaxine last May and off Wellbutrin/bupropion two months later. The same doctor and I decided to switch me from Effexor to Prozac. And I have stayed on 20 mg of Prozac on the advice of SA. The daily ebb and flow, mostly flow, of anxiety started building up in June. My wife and I flew to Japan in early August for 12 days. That was a tough trip--professional responsibilities, extreme heat and humidity, and of course multiple time zone changes out and back. All this involved stressors, to say the least. SA and my good therapist (an ACT specialist) helped me keep going in the absence of almost any windows. But from nearly six months after I stopped the Effexor, the anxiety symptoms, along with cortisol spikes on waking and crying jags almost every morning, started to recede quite fast and as of now, mid December, have remained much less disturbing. This has greatly helped me deal with the continuing symptoms, principally heavy derealization fogginess, blurry vision, mental fatigue, and relatively low-levels bouts of anxiety, which occur some days.

 

Dear leLegend, that's of course my experience, but you will start to see a pattern of recovery, and as others have said four months of little change is not uncommon. In my case it was six months. My neoplastic brain continues to heal itself, and I now understand that the continuing disturbances I have are part of that process.

 

I'm thinking of you, since we don't live very far from each other!

[thelegend]

3 hours ago, Edmunds said:

Dear leLegend, that's of course my experience, but you will start to see a pattern of recovery, and as others have said four months of little change is not uncommon. In my case it was six months. My neoplastic brain continues to heal itself, and I now understand that the continuing disturbances I have are part of that process.

 

I'm thinking of you, since we don't live very far from each other!

Thanks @Edmunds! I really appreciate you sharing your story and the hope that it will get better. Unfortunately I am actually 7 months in not 4, but hopefully that doesn’t mean that it won’t get better.

[sunnysideup69]

4 hours ago, thelegend said:

Thanks @Edmunds! I really appreciate you sharing your story and the hope that it will get better. Unfortunately I am actually 7 months in not 4, but hopefully that doesn’t mean that it won’t get better.

It doesn't mean that at all. I've been wobbling around for a year and a half, and over the last two months have started to see some better improvements. Hold steady  I'm working and am finally just creeping out into socialising again. You will feel better, it's just so gradual.

[Giulietta]

13 hours ago, sunnysideup69 said:

I've been wobbling around for a year and a half, and over the last two months have started to see some better improvements. Hold steady  

 

Hello Legend,

 

21 hours ago, Gridley said:

Yes, it will get better.

 

Improvement is on the horizon - it takes longer than we'd like. Keep truckin' as 'they' say