Did I screw myself up

[Guest [Pf...]]

I went into a bad situation about a week ago.  I am not even sure it is benzo withdrawal.  After months of steady improvement and then a backslide at 9 months through 10th month (March 5 anniversary), I ended up at the ER with such muscle cramps in head and neck that I thought that I might actually break a bone or rip a muscle, including my eye muscles.

 

Eventually, with things going downhill with no sleep and all of this going on, I used Klonopin for two days (about 1.5 mg per day) which did bring some relief.  But have since stopped.

 

I still have the bad muscle cramps.  I have also unexpectedly lost 15 pounds in the last months, which may mean something else is going on.  Did my temporary use set me back to square one?

 

I am now going through a series of tests b/c of the weight loss and muscle issues.  My muscle enzymes were elevated, but that may be the result (as opposed to the cause) of the tightening.

 

I am close to deciding to reinstate so that I can get on with life.  I have become the least functional ever, after having about 4 or 5 months of steady improvement to the point of being highly functional.

[[KR...]]

Whats Up Pfeff. Don't get down on yourself for taking a rescue dose to get you through a bad situation. You did what you had to do at that time to get you through that particular ordeal. Its done and in the past so just look forward and move on. These words I'm telling you came from a friend of mine Jaso19 on here. The reason I'm telling them to you is because I thought I royally screwed myself up when I reinstated 90 days after my cold turkey. I got really sick from it and had to taper off the reinstatement rather quickly. Once you reinstate and it doesn't work your stuck with a new problem of getting the drug out of your body again. However it may work for you. Who really knows. After I tapered off my reinstatement I went into this self pity mode that I made myself a whole lot worse and that I would be alot further along if I didn't do it. Well that may be the case. But I did what I had to do at that time in my life to survive this ordeal. I had to be told this by Jaso19 over and over because I got so down on myself for doing it. I still bring it up to her today and she tells me whats done is done. Shes right. This is very serious business and only you know what your breaking point is. No one will ever judge you for what you had to do. But you need to proceed with caution and know that you might create a bigger problem than you already have. Take care and I'm sorry your still dealing with this crap. At the end of the day you have to ask yourself "Is this the life I want to live going back on pills again?" You have to look at your life ahead of you and see if you want to live that life with or without drugs. If you choose pills. No biggie. I'm not anti drug at all. But if you choose to be pill free, now is a crucial time in your withdrawl to have a strong conviction to see this through.

 

Take Care, Rock

[[pi...]]

Hello Pfeff,

 

I would not put any more thought into what you needed to do at the time you took the klonopin, just move forward from there.  Perhaps now you should just wait until all the results of your tests are in. Since you have lost a significant amount of weight there could be something else going on. I also have bad muscle cramping in the same area as you.  I did bike ride last week and I think I am paying for it now, I guess I'm just not ready for that yet.

 

I know others are in a bad wave at about 9 months out. Who knows why this happens after having some pretty good weeks or months.  You will make the right decision for yourself.  I hope and wish for you to have relief from the pain.

 

pianogirl

[[re...]]

Only you can decide what is right for you, but please think through reinstating. You know you cant stay on these drugs for the rest of your life. You will have to increase dose to the point of losing your personality etc. Do you want to go through another withdrawal?

 

I know it is hard, but you have 10 months of healing under your belt. Your muscles WILL heal soon enough.

 

I hate to see you go back on that poison.

 

Is there some way you can cope with the cramping? Is there anything else you can take to help that wont interact with your GABA?

 

Hope you feel better soon.

[[ra...]]

I have lost 27 lbs had all kinds of blood work done MRI stool samples and for me it's all wthdrwal

[[su...]]

Hello Pfeff,

 

 

I saw your question and put together some information that may be helpful.

 

 

Question from benzo.org.uk on reinstating From TRAP the reference link is:

 

http://www.non-benzodiazepines.org.uk/benzo-faq.html#Question16

 

 

.

(16) Question: I am in protracted withdrawal and I am considering reinstating, should I?

 

Answer: Reinstating or "going back on" after being off benzos for more than a couple of weeks is fairly unpredictable and is generally advised against unless the person is severely suicidal. The results from reinstating for protracted withdrawal are very unpredictable. It seems a lot of people find the pills don't work the way they did before they came off. Some people do get relief of withdrawal effects by reinstating for protracted withdrawal but often people either get no relief or only a few days of relief before feeling like they are back in withdrawal again even on a stable dose. Occasionally people actually feel worse, sometimes developing severe paradoxical reactions when reinstating for protracted withdrawal. When you come off the pills your benzodiazepine brain receptors switch states and there are all sorts of complex chemical and physiological changes involving gene transcription coding when you go into the post withdrawal phase and thus going back on pills has unpredictable effects in a lot of people. Some people from reinstating for protracted withdrawal do get relief but for many others they get little or no relief and for some they even feel worse and go paradoxical. In laymans terms you shouldn't generally interupt the delicate healing process of the central nervous system once it has begun. Another problem is to use the medical terminology, is the kindling effect, the kindling effect is where multiple withdrawals, putting the body into withdrawal and out of withdrawal multiple times can cause a hypersensitisation of the receptor systems and thus causing the nervous system to be hypersensitised which can lead people to not being able to stabalise on their benzos as well as they used to and as well as to feeling toxic on the drugs and as well as finding that each withdrawal is worse than the previous. In simple laymans terms it is often but not always harder the 2nd time around and even harder the 3rd time around at withdrawal, in people who have completely withdrawn and then went back on. This does not seem to be the case for people who have partially tapered down their dosage and then upped dose. It seems only the case for those who have completely withdrawn for more than a couple of weeks and then went back on multiple times.

 

 

 

 

 

2011 Supplement to the Ashton Manual.  Here is the link:

 

http://www.benzo.org.uk/ashsupp11.htm

 

This statement is from the Supplement:

 

Reinstatement, updosing

 

A dilemma faced by some people in the process of benzodiazepine withdrawal, or after withdrawal, is what to do if they have intolerable symptoms which do not lessen after many weeks. If they are still taking benzodiazepines, should they increase the dose? If they have already withdrawn, should they reinstate benzodiazepines and start the withdrawal process again? This is a difficult situation which, like all benzodiazepine problems, depends to some degree on the circumstances and the individual, and there are no hard and fast rules.

 

Reinstatement after withdrawal? Many benzodiazepine users who find themselves in this position have withdrawn too quickly; some have undergone 'cold turkey'. They think that if they go back on benzodiazepines and start over again on a slower schedule they will be more successful. Unfortunately, things are not so simple. For reasons that are not clear, (but perhaps because the original experience of withdrawal has already sensitised the nervous system and heightened the level of anxiety) the original benzodiazepine dose often does not work the second time round. Some may find that only a higher dose partially alleviates their symptoms, and then they still have to go through a long withdrawal process again, which again may not be symptom-free.

 

 

I hope this is helpful,

 

Summer

 

[[Fl...]]

I seriously doubt two days worth of K is going to have a huge impact on your recovery. Sucks you are having to go through this. It's good that you are getting it checked out and not assuming it is 100% positive wd symptoms. Having a foggy head or other mental/cognitive symptoms is one thing but severe muscle cramps and weight loss are another. Hope you start to feel better soon.

[[Pe...]]

Pfeff,

 

I had a horrible wave that lasted from the middle of month 8 until just about the end of month 11...after it let up I had my biggest improvement ever.  It is very common to get hit at this stage with a long hard wave, but it generally is a good indication that you are nearing the final stage of the game.

 

I would do like Pianogirl said and don't look back...just move on.

 

I also agree with Floridaguy that 2 days most likely will not have a big impact on your recovery...but if you reinstate your health will only most likely decay over time due to the effects on the neuropeptides in the brain, the continued down regulation of GABA, the decrease in other neurotransmitters and increase in glutamate....

 

And next time around the WD sx's could be much worse due to kindling.

 

I lost so much weight from tolerance and WD my doctor tested me for cancer and AIDS.  My weight has since come back..

 

I have seen at least one other member who had elevated enzymes...which may be due to all of the muscle involvement during the recovery process.

 

I wish you the best Pfeff...think long and hard about this one buddy....you could be getting close to the end if you hang in there based on the pattern of waves other people who have written success stories experienced.

[Guest [Pf...]]

I have never felt this bad during the entire withdrawal process.  And it is all focused on the eye and neck muscles.  It seems like everything else cleared up, so I wonder if there is something else going on.  Or if I can take something else.

t a

My doctor came me the muscle relaxent selaxan/mitaxilor, which supposedly does not touch gaba receptors.

 

I cannot imagine that withdrawal would get this bad this far out after never being close to this.  Prior to this, the only really bad time was at 3-4 months, where I was bedridden for about a week.  Even then it was just very uncomfortable.  The rest of the time, all symptoms were only set off by overdoing it, or certain types of lighting and activities.  Now I feel in excruciating pain 24/7. 

 

I have not heard anyone else on here in withdrawal that followed that pattern.  I would say from the day I stopped through the first 7 months, I was at 60% to 90% of myself.  Month 8 was about 75%, but always fine if I was just sitting home and relaxing.  Month 10 has turned into about 10% -- totally non-functional due to physical symptoms and four trips to the ER.  I do not see any end in sight -- things are going down hill.

 

Also, the only weight loss I had in the past was when I started to feel good and really focused on diet and exercise.  Then I entereed the beginning of the recent down period -- less exercise, and less motivated to eat well.  And I have lost about 15 pounds.  I am almost hoping they find somethign else which can be corrected.  If it is withdrawal and is getting worse and worse, my gaba system must be so screwed up there is no telling how bad it might get.

[[re...]]

You may want to rule out lyme disease. It can cause weight loss and severe neck pain. Just a thought. But hopefully it is just wd and you will soon be past this.

 

Keep us posted.

 

[[...]]

Hi Pfeff -

 

I am really sorry to hear of your recent struggles.  Just so you know, I am just over 10 months off and am also having a very difficult time, primarily with physical symptoms.  I continue to experience muscle wasting, my gums are receding, my bite is way off, I have pain in several joints, back and legs, etc.  I've had my blood drawn several times over the past 6 months and my muscle enzymes (creatine kinase) have always been high.  My neurologist said that is due to muscle damage, and I expect that damage is from using wasted, weak muscles due to w/d.  I was able to work out pretty hard during the first 7 months of w/d, but now I cannot. 

 

So (although I was miserable in the earlier months) similar to you, my physical symptoms now are the worst.  I did recently discover that my thyroid isn't functioning properly (hypothyroid) and that may be why I am feeling so much worse of late.  Hopefully your doctor will run a wide variety of blood tests, including thyroid. 

 

Please keep us posted as to the results from your doctor visits, etc.

 

Rico

[[re...]]

Pfeff, can you think of anything that might have caused this backslide? Any supplements you took? Any new stress?

 

I can understand how you might be thinking about going back on the K. But of course, you can't stay on it forever. You'll have to taper off again, and it might be even harder next time.

 

Still, if you do decide to reinstate, I think you should take the lowest possible dose, just enough to make your symptoms tolerable, and then start a long, slow taper right away. Don't get too comfortable on it.

 

I know that's grim advice. I wouldn't try to sweeten it up for someone as sharp as you.

Good luck. I'm pulling for you.

Evan

[[Pe...]]

I have never felt this bad during the entire withdrawal process.  And it is all focused on the eye and neck muscles.  It seems like everything else cleared up, so I wonder if there is something else going on.  Or if I can take something else.

t a

My doctor came me the muscle relaxent selaxan/mitaxilor, which supposedly does not touch gaba receptors.

 

I cannot imagine that withdrawal would get this bad this far out after never being close to this.  Prior to this, the only really bad time was at 3-4 months, where I was bedridden for about a week.  Even then it was just very uncomfortable.  The rest of the time, all symptoms were only set off by overdoing it, or certain types of lighting and activities.  Now I feel in excruciating pain 24/7. 

 

I have not heard anyone else on here in withdrawal that followed that pattern.  I would say from the day I stopped through the first 7 months, I was at 60% to 90% of myself.  Month 8 was about 75%, but always fine if I was just sitting home and relaxing.  Month 10 has turned into about 10% -- totally non-functional due to physical symptoms and four trips to the ER.  I do not see any end in sight -- things are going down hill.

 

Also, the only weight loss I had in the past was when I started to feel good and really focused on diet and exercise.  Then I entereed the beginning of the recent down period -- less exercise, and less motivated to eat well.  And I have lost about 15 pounds.  I am almost hoping they find somethign else which can be corrected.  If it is withdrawal and is getting worse and worse, my gaba system must be so screwed up there is no telling how bad it might get.

 

Thanks for coming back and clarifying your situation Pfeff.  I realize looking back that I did not encourage you to investigate these things further with your doctor...I was surprised I forgot to add that...and esp now that I see your weight loss started so late in the recovery it is a concern and should be investigated.  I had a lot going on yesterday and apologize for that.

 

I know that myself, Linder, Bradley (from another benzo forum), and Bliss Johns (who wrote "Benzo Wise") all experienced a worsening of sx's just before we began to feel better.  While scouring through the posting history of other members who wrote success stories I was able to find two others...I think one was BYBYMatrix...I am sorry I cannot recall the other members name...Linder and I were talking about it once so perhaps I can ask her if she remembers.  I did this because these types of details are not always written in their success stories.

 

Linder and I were talking about it because we were both hit hard at about the same time frame as you are at with new and more intense sx's which puzzled us too...and we were trying to figure out what the heck was going on as well.  Bradley told Helpme123, who was also stopping by my blog, that he felt like the recovery was even moving backwards at times...which was exactly how we felt.

 

I was deeply struck by your situation as you have fought so hard this time around and had come so far.  I am really routing for you and have a deep hope and concern you will make it out of this mess.

 

By all means you should follow up with your doctor on this and make sure nothing else is going on...IMO that is the responsible thing to do for sure.

 

I never had nerve pain or muscle spasms in my mid-back until almost my 9th month...and when they came on the discomfort was really a shock being that I was so far out and it was so intense.  I even remember saying to my husband I now understood why some people reinstate so far out as this was truly miserable.

 

But I am so thankful that I did not give in and hung in there...which was really hard as the increased sx's intensity truly brought me to my knees.  Because of my own experience, having such a difficult period for month 8-11 your situation really moved me...because I felt the desperation creeping in when I was where you are at now.

 

I also remember saying I would gladly volunteer to play guinea pig in a trial for one of the new treatments on the horizon because I just couldn't take one more second of one more minute...truly words of desperation.  I never said anything like that in the months prior...

 

I don't normally make statements without the proof to back them up but I hope this information will help fill in the blanks I left out in my previous post.

 

This journey can really throw us some curve balls.  I truly hope you make it Pfeff and wish you all the best no matter which way you decide to go.