☼ Maybe

[Maybe]

Thank you all so very much for reassuring me again and again. I don't know what I would do without all of you. I am glad that someone invented the internet before I took the pills

 

Today is better again and I hope the weekend will release some more stress. Going to take a nice walk tomorrow.

[Altostrata]

You're sounding better, Maybe. Yes, recovery is very up and down.

 

Good idea -- focus on reducing stress. That will help a lot.

[Maybe]

Thanks Surviving.

 

I have a question about a symptom though. Did anyone ever get symptoms from using a headset? I get weird head feelings and a bit dizziness when I use one. Seems that my nerves are somehow affected by it, but I do not know why, because I have no problem when I hear loud music or so. And I even get the symptoms when the headset pressure is only very light. So weird...

[Healing]

Is it the kind of headset that seals sound in? I've heard it's better for your ears to use the open kind of headphones. It sort of allows your ears to pick and choose better what they want to take in. How's that for highly technical lingo?!

[Maybe]

I already use open headphones, because the closed ones made it much worse. Maybe it is because of a slight vibrating of the headset, which arouses the nerves around the ear? Unbelievable, there are myriads of weird symptoms one has to endure...

[Maybe]

Being in a bad wave again, though it varies strongly from day to day and hour to hour. So on the whole it is endurable and I can still work. When I was in hospital we exercised every morning for 15 minutes and after those 3 months, besides some anxiety symptoms (no fear, just weird head symptoms) for 2 weeks after I left it, i felt better and better until I was back to normal. Then came the two acupuncture sessions which made everything worse, though in a slightly different way. Everything now feels more "hard", more physical. I know I have asked this again and again, but can it not be that the acupuncture sessions damaged my cns, because it still was in a labil state? Is that even repairable?

 

I cannot comprehend that I felt much better for 3 months (and this was not the gap between phase I and II, I had this as well and felt normal for 2 months when I was hit hard again), even being back to normal. Those sessions are now 11 months in the past and there is no significant improvement.

 

When I went walking for 15 minutes yesterday before work, the day turned out to be a bad one. Head pressure, dizziness etc. The weird thing is all symptoms, it does not matter how bad they are, are gone when I wake up the next day. Always. That does not mean that I feel better, I can still feel bad, but it is always different. I have the feeling that my cns is out of control, which could be going on for ages, just because I harmed my cns with acupuncture when I was on the road of healing. This is so unbelievable stupid, I could kick myself for it. And there is nothing I can do to help myself, when even walking makes me feel worse.

[Altostrata]

Maybe, since exercise helped before, are you getting some exercise every day?

 

Walking for at least a half-hour each day can really help -- it increases neurogenesis, improves mood, regularizes autonomic function, exposes you to natural light, and gives you something else to think about.

[Maybe]

I am currently trying to do much more. Walk every morning for 30 minutes before work and maybe doing some sit-ups etc. Havent done anything besides walking now and then since I am out of hospital for 12 months or so....

[Altostrata]

That's excellent. Maybe it took a little while for that activity to help. This doesn't mean more is better -- don't push yourself if you don't feel well after exertion.

 

Please focus on the fact that your symptoms are changing and sometimes you have windows of relief. This is a very good sign that your nervous system is healing.

[Neuroplastic]

Indeed, the vital thing is to go the middle way and listen to your body. There's a good chance you may turn the corner quite soon.

[Maybe]

I will try slow 15 minutes maybe 3 or 4 times a week. We will see.

 

The weird thing is, that I had those windows from the beginning. But in the mid of 2010 they were much longer and better than they are now, because I sometimes felt 95 to 100% recovered. I am maybe at 60% to 80% now, but for the last 11 months...

[Healing]

I've done the same thing, where I think, "If only I hadn't gone up/down on that supplement." Or, "If only that stressor hadn't occurred." Then I'd be fine right now. I think it's a red herring. We go into a pre-wave state where we don't know we're pre-wave yet, but anything -- anything -- that happens next will push us over the edge into the wave. Eating a rice cake would trigger a wave.

 

Also, unless you're doing something egregious to yourself -- and two sessions of acupuncture is not egregious -- then you haven't done anything to bring on a wave -- even a long-lasting one. It's just that neurological repair is infamously non-linear.

 

Sending soothing energy.

[Altostrata]

That is true, Maybe. It may have been a coincidence that you had acupuncture at the time a bad spell started -- correlation, not causation.

[Maybe]

I would think so as well, if it hadnt been that obvious that the acupuncture worsened my condition dramatically.

When I had my first session, I felt 100% back to normal. No more symptoms for over 2 or 3 weeks. After the session, my symptoms got worse every day with the 3rd being the worst (This 3 day pattern occured quite often in my w/d). The stupid thing was, that on the 4th day, I had another acupuncture, not relating the first session to the worsening of my symptoms, because I thought that being home where everything started increased my anxiety.

After the 2nd appointment the symptoms got worse again during the following days. But this time the 3rd night was one of the worst of my whole w/d. Only had 3 or 4 days without any symptoms in the past 11 months since then.

[Healing]

What I'm saying is -- the acupuncture might have triggered the wave, but if it hadn't been the acupuncture, it would have been something else. A Vitamin C pill. A heavy meal. You were "ripe" for triggering.

 

Acupuncture is not this powerful. When it works for people, it's because they take a long course of it, or even have maintenance treatment forever.

 

Yes, an acupuncture session can trigger a bad reaction. But the only reason a bad reaction would last such a long time, is that you have a vulnerable, healing nervous system. And when you have a vulnerable, healing nervous system, you cannot avoid *something* triggering it. Even if you wrapped yourself in cotton and stayed in bed, a *thought* could trigger an adrenaline dump, and thus a wave.

 

We can't avoid waves. Man, I wish we could. And I will continue to brainstorm how we might. But, so far, we can't.

[Maybe]

Well, you are surely right. I would have had no bad reaction, if my nervous system was healed already. What makes me wonder, though, is, that since then I had only a few 100% days when I had 2 or 3 weeks before.

 

Ah well....I will try to exercise more and more and see how everything developes...as always.

[Maybe]

Just a short update.

 

Today i hit the 21st month mark.

Still dealing with all the nice symptoms and ups and downs. Overall life is endurable, but still far from how it was before the meds. I hope that the coming months will be more up than down.

 

Thank you all for helping me keeping the faith in recovery!

 

Remaining symptoms:

 

- Tinnitus

- Movement sensitivity, especially when moving "slightly" and when stopping the car (very weird)

- IBS sometimes resulting in a kind of body dizziness

- Dizziness

- Weird leg feelings

- Light to med headaches

- General feeling not normal yet, sometimes I feel ill, but have no illness

 

All those symptoms vary in intensity and can come and go from hour to hour and day to day.

[Maybe]

Is it normal to feel exhausted 21 months out? After I worked out a bit yesterday and taking a longer walk (around 45 mins) I had a bad bed time with strong symptoms around my neck (hot, dizzy). And now today I feel completely exhausted, have weird pains in my neck now and then and just feel like crap. What have those pills done to our bodies. I just cannot comprehend that...

[Maybe]

Ok, I came to the conclusion that I have to refrain from visiting the ad forums as I used to. The stories of ongoing w/d even after such a long time is bringing me down, i am losing hope of ever being able to recover from just having taken 4 pills. They destroyed my current life. My fear has risen again tremendously of even getting worse that far out like Punar has.

 

If I am not healed at 24 months, I aim at 30, 36 and on and on until when? There was not a single improvement after I have had the acupuncture and that is close to 12 months ago. When I see that many with a much more severe wd experience recovered after some months or a year, i am devastated.

 

I thank you all for having helped me so far, but I cannot cope with this situation anymore.

[stan]

hi Maybe,

 

i have your symptoms you describe but much more severe and many others, but i am 60 and have taken 13 years(it plays)

reading testimonies or not, frequent a forum or many or not, for me do not add or worse

it is similar as to say that an alcoholic who frequent AAnonymous association would be worse, it is not the case because it helps him to better resist in drinking again

all your damages have been chemical pills(not by thinking patterns), act on thinking cannot heal(example leave forums)

time given to chemical healing can heal (it is proven)

but if you have no pleasure to go to a forum or in the street and it hurts you, so do not do this

but for me you will not heal quicker

i read testimonies from people who come rarely on forum and other frequently, i do not see a significant difference

i read some people disappear 6 months, one year, and reappear with many problems, and often they disappear more long time,

i cannot give names but i have a lot

since three years i have read around testimonies to find answers on my questions (it was not hurting me)

i will say you a sentence i read : do what you think is best for you

[Maybe]

Hi Stan,

 

Thanks for your answer.

It is just that when I read about years of prolonged wd, my anxiety goes up twentyfold and my mood crumbles. Especially when I do not feel good myself. And I doubt that this is positive for my cns or helping me to heal.

The people here and on the other forums helped me a lot to understand my situation and support me. But now all that is left is a call for perserverance, a small glimp of hope that someday one may recover. But nothing is for sure.

[stan]

i understand, you are not a long termer, and fear with these hard histories, it is life,

you are young, it will go

[Punarbhava]

Ok, I came to the conclusion that I have to refrain from visiting the ad forums as I used to. The stories of ongoing w/d even after such a long time is bringing me down, i am losing hope of ever being able to recover from just having taken 4 pills. They destroyed my current life. My fear has risen again tremendously of even getting worse that far out like Punar has.

 

Maybe..........many times members feel that they need to walk away from the forums for awhile for the very reasons you have stated. It's okay and you will be okay. IMHO it's not good to read scary stories day in and day out especially when one's CNS is still fragile. In fact, it does do you more harm whem fears are regularly ignited.

 

 

As for my situation............yes, I've had a really rough month however, you are unaware of the stressors that have played out during this time. No doubt I got hit with a wave on top of my regular ongoing cycling symptoms but I truly believe this wave was made worse due to some unrelenting stressors. The stressors were not of minor proportions but rather, major. I don't share this to complain but rather, so you can put my situtation into context.

 

I've had to place in context myself. My advice is to keep your life as calm as possible (mentally, physically, emotionally and spiritually). If that means avoiding the forums then that's what you need to do at this stage of WD.

 

If I am not healed at 24 months, I aim at 30, 36 and on and on until when?

 

 

This is what we all have to do but keep in mind, I don't know of one person who is in agony at 3 years off. In fact, not even at 30 months off (as long as they have remained drug/alcohol, supplement and herb-free). Yes, you and I may still have symptoms at the 30 month mark but we won't be suffering to the degree that we are now. Life will become easier.

 

Hopeful posted a response to me in one of STan's threads and she stated that her recovery become more linear in nature at the 2 1/2 year mark. My xanax recovery at one point, symptoms started to drop off more quickly and recovery became more linear. Hopeful's post reminded me of all this.

 

I know exactly how you feel. I had it real rough at the same stage you are at but then, I had about a 2 week window where I seriously thought I was turning the corner. I wasn't completely symptom free but let me tell you, it was the best I had felt since being off the drug and I felt life in my mind, body and soul.

 

Then I experienced a lot of stress and the cumulative effect didnt't help and I believe this really set off my CNS is a very bad way. Yesterday and today, I'm starting to feel so much better than what I was.

 

I'm going to keep my life quiet and calm and eliminate all stressors, as much as possible, so I can navigate through the next few months.

 

There was not a single improvement after I have had the acupuncture and that is close to 12 months ago.

 

If acupuncture was that effective people would go for a couple of visits and be cured for a least a good year afterward. Acupuncture is not the cause of your suffering. The course of your recovery is typical for many people. The first couple of months are known as "the honeymoon phase". WD kicks in big time about the 3rd month for many people.

 

When I see that many with a much more severe wd experience recovered after some months or a year, i am devastated.

 

I understand Maybe. I feel the same. lt just isn't fair nor is there any rhyme or reason. Everyone is different.

 

BTW, it's not wise to compare your recovery to mine. You must know that I've been through multiple psyche drug C/T, cold switches, tolerance WD ect and so, it may take me longer to recover than you since, my brain has been assaulted many times over. Not to mention, I'm much older than yourself.

 

As STan mentioned, you're young. You WILL bounce back.

 

I thank you all for having helped me so far, but I cannot cope with this situation anymore.

 

Just know that we will be thinking of you ......only wishing you the best. We will always be here for you should you decide to return.

 

 

Whether you return or not, one thing is for certain,........ You WILL RECOVER. You're going through rough phases right now, as I have, but we will reap the benefits in the very near future. We just have to hang in there, keep calm and keep the faith. BTW, it's more than okay to have meltdowns about all this. I have them myself but I have to pick myself back up, realign my expectations and keep focused on reality recovery time-lines to get my emotions back on track.

 

I won't deny that I'm disappointed, discouraged etc. since, I really was hoping to turn the corner on my birthday (2 year mark), especially because my financial situation becomes scarier the longer this goes on. It was a horrible, disappointing day but I'm not going give up, even though at times, I can't see the forest for the trees.

 

 

Splendid Healing IS Happening Right Now Maybe. It sure doesn't feel like it but make no mistake..............healing is indeed occuring. You're going to be OKAY!

 

Punarbhava

 

[Punarbhava]

The following is a post by Neuro.......

 

 

You may try doing things you can do - exercises, going out, interacting with people, etc., but, at the same time, keep learning the limits to which you can do them. "Too much" in your state may be interpreted as "not enough" by the healthy ones, but the "compass" of what is "too much" is in yourself. I know how cliche it sounds, but, really, the "middle-way" is always the best. There're days you may feel good enough to do more things, and that is great, but there're days when any pushing is absolutely counter-productive and literaly wreaks havoc on the system.

 

One thing is certain; you will heal no matter what.

 

 

Neuro...........

 

I'm trying to get caught up on many posts but in the process, I have recalled your advice to Maybe and thus, I very much wish to comment.

 

 

I believe your above post should be a thread of it's own, (maybe even a stickie of some kind) under the symptoms category, so others can obtain easy access, to what I believe is important guidance.

 

 

I couldn't agree more with everything you have written.

 

 

Anyway, just my humble Punar opinion.

 

 

Punar

[Neuroplastic]

Thank you, Pun. You know my story - the extreme double c/t, in which I still have had to go to work. Something that can never be described with words, though I'm trying to do my best. In my case, this "pushing" thing was more like "I have NO other choice" life-wise. Nobody pushed me, telling me what I should or should not do. It was life that decided for me. But in case of many, it's their families, friends, therapists (who know *nothing* about WD, by the way) that tell them to pull themselves together, to go out, to do this or that. But you can't push the already "pushed-to-the-limits-and-beyond" living system, as some would want. Healing takes time. Yes, we can assist it by slowly doing more and more. But there's no rush.

 

To Maybe, your feeling worse than several months ago is one of WD-patterns. It's obnoxiously counter-logic. Yet, it always ends the same way - you heal.

[Maybe]

And here I am again. Good days, bad days. No day without symptoms.

 

I took a walk yesterday morning and it seems this was a bad decision. Felt weird after some time (walked too fast?), which settled down after I was done, but I felt much worse in the evening when I lay down to sleep...as always. And today is a bad day as well. Tingling/burning skin, headaches....and so on. I am so worn out, I cannot describe it. I could cry all day, because I have no power to take those waves anymore. Nothing that can help to ease them and they did not change for 12 months. I feel so alone and helpless....

[Healing]

I'm so sorry you're having a hard time, Maybe. It will absolutely come to an end. Sending you healing wishes!

[Maybe]

Thank you very much Healing. I just wonder why there is no real change in intensity when in a wave. The only thing that has gotten better, at least I think so, are the digestive problems. The rest is the same or sometimes even worse.

[Maybe]

Btw...I just found out that acupuncture stimulates the release of serotonin and endorphine. So when my system was in an already weak state, I harmed it again with the two acupuncture sessions. I believe that this was even a bigger failure than taking the 4 pills. If I had not done this, I maybe would be recovered by now. Bad luck.

[angie007]

Hey maybe,

 

How are you doing buddy??

 

Pun;-

I read your wonderful response to maybe,

but i cant help feeling a bit scared, you mentioned the first few months being known as the honeymoon period,

and wd really ramps up at month 3 on wards, omg, how much worse can it get?? its been bad enough all ready,

and if it gets worse i fear i may not be able to do this after all.

The thought of a 56month taper, and wd since, and the thought that all of this ive been through is known

as the honeymoon stage, leaves me fearing whats to come now.

[Maybe]

Hey Angie,

 

Not too well right now, but overall mediocre.

 

It is not said that you will have an even worse phase after 3 or 4 months. It is possible that you will be through the mess after this period.

I had this so called "phase two" as well, but it was not worse, but different. Do not get anxious about things that might never come. I know easier said than done....

[Maybe]

I am in need of some objective reassurement. Currently I just do not know what I should "believe" or not. I read about people who recovered after a horrid w/d. Other people still have symptoms even 7 or 8 years out. As far as I know only very few have had troubles after a small dose like me. I only heard about one woman that recovered after 2 years having taken only 10 pills. Some others on PP have taken a small dose but did not have waves and windows.

 

Could anyone please give me an objective estimation, how likely it is (or not) if I will recover based on your experiences and information? I need something to grab, something that gives me back hope or a sense of "reality" when it is unlikly that I will recover. Not empty rhetoric like, but something valid, if you understand me. I know no one can know it for sure, but just some tendency based on some valid data...I don't know. I just feel lost. My parents are there for me, but they have no clue of course. They do not know what to say anymore.

 

Please anyone?

[Maybe]

I am sorry. I have read your previous positive postings. There is nothing more you could write to reassure me I guess. I just need to hope that some day the waves will end and I will be able to enjoy life again.

 

I am just so worn out by all of this, sometimes it is just hard to cope.

 

Thank you all for your support! I do not know where I would be without it!

[Punarbhava]

 

Pun;-

I read your wonderful response to maybe,

but i cant help feeling a bit scared, you mentioned the first few months being known as the honeymoon period,

and wd really ramps up at month 3 on wards, omg, how much worse can it get?? its been bad enough all ready,

and if it gets worse i fear i may not be able to do this after all.

The thought of a 56month taper, and wd since, and the thought that all of this ive been through is known

as the honeymoon stage, leaves me fearing whats to come now.

 

Hi Angie.......

 

I'm sorry my post to Maybe caused you distress. Sometimes, trying to assist one member lands up scaring another.

 

 

BTW, some people feel better once off the drug If they were in severe tolerance WD state), others will feel no different than when they were tapering and yet others will feel worse once the jump off their last dose. So, everyone is different and there's no way to predict how any one person's post taper will play out.

 

 

With all this said, SO many people recover within a month, two months and even at the 3 month mark after stopping the drug. So, do keep this in mind. The odds are even more in your favor because you did a very slow taper.

 

In regard to fear: fear will not prevent anything anyway. This is what I told myself and continue to remind myself. You could be worrying unnecessarily. Please try to focus and in fact, anticipate a quick recovery. Having this positive mind-set will allow you to more fully engage in life in the present.

 

I hope this is of some help. BTW, you've done a fabulous job of tapering.....it took a lot of commitment and determination and remember the fear you had of stopping the last bit completely? Well, You felt the fear and you did it anyway and now look at you! You are completely drug free and you are able to go out and shop etc. and still engage in life on some levels. This is wonderful!

 

You've accomplished too much to allow anymore fear to ruin even one more second of your freedom. Keep the faith, distract via activities that you can comfortably engage in, stay calm, eliminate as much stress as possible, fit in a lot of quiet/rest time to nurture your CNS, manage your current symptoms as best as you can and allow a bit more time to pass.

 

 

You're going to be fine.

 

Much More Healing to You and Complete Recovery!

 

Punar

[Punarbhava]

I am sorry. I have read your previous positive postings. There is nothing more you could write to reassure me I guess.

 

It's true, unfortunately, there is little more that we can write. If we had definitive answers we'd all able to predict our own recovery time-frame. Being as I can't even predict my own (lol), I'm unable to predict yours or anyone else's. I sure wish I could but that's not possible. I understand that it's frustrating not-knowing WHEN full recovery will occur but ......

 

 

All we can do is give general estimated recovery time-lines, based on recovery stories, observation of thousands of people who have travelled through various WD forums over the years, as well as drawing upon Ashton's manual, and published papers by a few doctors who have studied and/or observed WD syndrome.

 

I just need to hope that some day the waves will end and I will be able to enjoy life again.

 

Yes, you do need to hope. Only you can provide this to yourself by beginning to focus on those who have recovered rather than focusing on how you feel in this moment and/or how you've been feeling up until now. Your past and current state is not indicative of how you will feel 4 months, 6 months from now.

 

Remenber the first chunk of this journey is ttruly the hardest. You're nearing the end of the hardest and longest phases and the remainder will be so much easier. BTW, I have to remind myself as well, so I don't become seduced into believing that my current state is a never-ending sentence.

 

BTW, I'm now 2 years and 16 days AD free, have come out of a bad and lengthy wave a couple of weeks ago and I'm feeling the best that I've felt since this whole unbelievable nightmare began.

 

I am just so worn out by all of this, sometimes it is just hard to cope.

 

Again, I do understand. I was where you currently are............long, long, never-ending months of seeing hardly any progress, only punctuated by very brief windows (day or two at a time), daily cycling of a multitude of symptoms and then being hit with long waves, on top of the regular suffering. It's discouraging however, keep in mind that there is a positive pay-off for enduring the storm.

 

All this CNS activity is indication that healing is occuring.

 

 

Thank you all for your support! I do not know where I would be without it!

 

We're passing along to you what was given to us, by others, in our darkest hours.

 

 

Hang in there Maybe. A rainbow is on your horizon and I believe it's closer than you think.

 

Much More Healing to You and Full Recovery in the Near Future!

 

 

Punar

 

BTW, Angie if you read this post please know that I did a very rapid taper.

[Maybe]

Thanks again Pun

My main "mood" problem is that I have never had any big problems with my health before taking the pills. So feeling bad is bringing me down rather quickly. I guess my postings seem sniveling and self-pitying a lot of the time, but that's just the way I can release some of the stress.

 

And I am very glad to hear that:

"BTW, I'm now 2 years and 16 days AD free, have come out of a bad and lengthy wave a couple of weeks ago and I'm feeling the best that I've felt since this whole unbelievable nightmare began."

 

I hope that your cns and body stay on the course and the worst is now behind you!