Stroke like symptoms

[[Ma...]]

Left side is either spasming and stiff or weak and heavy but it is always a sensation as if it’s dragged down as if my left part of body  is non existing Falling of of me. 
someone has this?

[[Bu...]]

Hey @[Ma...],

I have experienced these sensations often both while taking clonazepam and during my taper.  It has lessened somewhat since being off but still flairs up.  It is also accompanied by a lot of pressure in the left side of my head.  Do you have the connection to your head, too?  When did it start for you?

 

[[Ma...]]

I have for 27 months now. 13 months off. No improvements…:(

I have pressure everywhere squeezed pulled turning into stone

[[WU...]]

Totally right-sided affliction for me.  Its strange how one or other side is affected. 

[[ns...]]

4 hours ago, [[M...] said:

Left side is either spasming and stiff or weak and heavy but it is always a sensation as if it’s dragged down as if my left part of body  is non existing Falling of of me. 
someone has this?

Sorry your going thru this!

I have this on my right side! Has to be withdrawal symptoms.  My arm, leg, body feel heavy, stinging, tingling, hyperactivity,spasms weak, jerky uncontrollable body movements, hypersensitivity bad for couple days now. Just trying to keep my mind and hands busy, my face and head is stinging right side for days now. Actually l over my body.nerves in my belly are jumping!

Waiting to stabilize so I can cut! 

Try not to focus, stay as busy as you can, don't panic, breathe thru your nose/mouth and slowly out your mouth.

I hope you feel better soon!

[[ns...]]

Mascha44444 

So glad your staying in touch

I'm so sorry for what your going through. You know it sounds a lot like the withdrawal symptoms I'm going through. I have.to lsy down in the fetal position also, have had to do this for 3 yrs now. I can lay on my back but not too long. I can't stand ir walk without my belly jumping inside. I'm stinging everywhere but I'm finding it happens mostly after I ear breakfast and lunch so it seems to be connected to food. I know you have covid, but you said your fever is gone that's great news. If your eating pay attention to what your eating ok. In withdrawal we have sensitivity to foods ND many other things. I'm not discounting that you are suffering from the effects of covid. I had covid and everything changed in my body and the way I reacted to many things. So covid seems to heighten symptoms, and this makes it so much harder in us. 

Om hoping I will start to notice feeling better each day but you really need to try to keep as calm as you can, by not getting to stressed. This only adds to the intensity of the symptoms right. I'm so sorry hun, I know your suffering terribly. It's so unfair. We try to do everything right and here we are, but we must stay strong and try not give these symptoms our focus. Your children will need you when you are well so ficus on that ok, if you can lay on your back, turn your head to the side that's not as jerky.breath deep and soften your eyes, let your eyes go out of focus as look at whatever your looking at.  Let your eyes soften, relax yourself. This will help u relax, then close your eyes and try to sleep ok, 

I do this often, sometimes it helps me, especially at night. But if your in bed, do this throughout the day. If u have tv in your room, distract yourself ok

Im.so sorry,  I hope this helps u,.I will pray for u, I just did.

Try to Rest now ok

Keep. In touch 

Ns

[[Mu...]]

Hi mascha

Sorry to hear you are still suffering. After 4 years 4 months then so free I'm still having the lower abdominal pain and tightness on the right side that I have had for 4 years now. Much worse when I'm sitting if I'm standing or lying all is well. Hang in there the only thing we can do is Ride This Out. Years ago when I joined benzo buddies we all talked of how we were going to heal at 16 months or 2 years and so optimistic. My optimism is playing out music 60

[[aa...]]

On 20/01/2024 at 22:57, [[M...] said:

Left side is either spasming and stiff or weak and heavy but it is always a sensation as if it’s dragged down as if my left part of body  is non existing Falling of of me. 
someone has this?

Mascha I am having this 24/7. Left side stuck up or seized.  Can't take it everyday.

[[Ma...]]

On 20/01/2024 at 21:11, [[B...] said:

Hey @[Ma...],

I have experienced these sensations often both while taking clonazepam and during my taper.  It has lessened somewhat since being off but still flairs up.  It is also accompanied by a lot of pressure in the left side of my head.  Do you have the connection to your head, too?  When did it start for you?

Yes my left head feels like pressure and as if it’s turning in stone same for the whole left side of body incl chest arms and shoulders 

[[Ma...]]

On 30/01/2024 at 02:37, [[M...] said:

Hi mascha

Sorry to hear you are still suffering. After 4 years 4 months then so free I'm still having the lower abdominal pain and tightness on the right side that I have had for 4 years now. Much worse when I'm sitting if I'm standing or lying all is well. Hang in there the only thing we can do is Ride This Out. Years ago when I joined benzo buddies we all talked of how we were going to heal at 16 months or 2 years and so optimistic. My optimism is playing out music 60

Same and baylissa keeps on telling everyone they will heal but most people I talk to even those who are 7- till 10 years off still have this

i have it head to toe now first was only left now complete body and it makes me disabled completely 

so I don’t know why I am alive if I don’t heal as no one does from this sxs 

[[Co...]]

On 06/03/2024 at 11:15, [[M...] said:

Same and baylissa keeps on telling everyone they will heal but most people I talk to even those who are 7- till 10 years off still have this

i have it head to toe now first was only left now complete body and it makes me disabled completely 

so I don’t know why I am alive if I don’t heal as no one does from this sxs 

A recent post of mine mentioned this and some related matters - I do not think it sensible to glibly advise people 'that everyone heals'. I do think, however, that even in extreme cases, there is potential (and there usually is) room for great improvement.

On 06/04/2024 at 14:32, [[C...] said:

Hi all,

@[Na...] has already provided you all with some much needed perspective. I'll try to add a few specifics and thoughts which might help too.

First of all, BB tries its best to be a broad church for those dealing with problems caused by benzodiazepines. This requires us to make some compromises about the content we will allow, sometimes letting minor infractions of the rules go unchallenged, but also adding some restrictions for the good of the whole community.

Swearing:

The actual rule -

Note how it is worded. We generally do not strictly enforce the rule. Moderators will make a judgement call, and there will be some variability in what various moderators find acceptable. (We are not too concerned about trying nail down full consistency in how this rule is enforced. Frankly, it is not worth the effort.) But we generally let minor infrequent profanity go unchallenged, and will sometimes let more serious (infrequent) examples go unchallenged depending upon the circumstances (if the member is particularly upset, for example). But the reality is that if we did not have the rule, a small number of members would habitually post profanity-laden content and many other members would find this unacceptable. Compromise is necessary.

Negative Content:

I posted about this just a few weeks ago. And @[Pa...] started thread about it last summer.

@[Pa...]'s thread:

Positivity:

We've had a few members in the past post about 'toxic positivity'. I am not at all a fan of the phrase. But we surely understand what it means. I touched upon this the post of mine I linked above. Sometimes members need to vent a bit (and this is OK within reasonable limits), and they might be looking for either reassurance or acknowledgment (or both). My advise is to respond in the way which seems most appropriate to the post.

Personal Comments:

Please avoid using personal comments when arguing with other members. Forcefully arguing your corner is generally fine - BB is a discussion space after all - but if it gets into name calling, it has gone too far. Even mild name calling works against constructive discourse.

The nature of Benzodiazepine Withdrawal:

The reality is that benzo use and withdrawal negatively affects how we interact with people. Most people here are not operating at their best and for very understandable reasons. But we all remain responsible for our actions. And how we interact with other members (who might well find even mild confrontation difficult) is important. Ultimately, although we understand that many members are impacted by benzodiazepine use or withdrawal and this sometimes negatively affects how they interact and behave, practical reality requires that members adhere to certain standards for the good of the wider community. We all sometimes need to compromise.

Do we all Heal?

There is no simple answer to this. It is not known (for certain) if benzodiazepine use causes permanent changes in some people. Practically, we do not know, for example, if an individual suffers from other medical or psychological problems which could be the cause of their problems. They could be a long time user of benzodiazepines and compare their benzodiazepine-free self to how they were, perhaps, 25 years earlier (before benzos) - comparing our older self with our younger self is not a good comparison. They could be traumatized by withdrawal, and this is the cause of their protracted difficulties. Irrespective, even if there are permanent changes for some people, this does not preclude improvement and better management of their symptoms.

Reports/Flagging:

If you feel that another member posts or responses are inappropriate, you should report them. We do not actively monitor content - we generally rely upon members to report problems. Whilst we do not wish to encourage frivolous reporting, if you feel a post is wrong for some reason, you should report it. (Click the 'meatball' menu (...) top-right of the offending post, select 'report', and add a comment.) We would rather have posts reported in error than problem posts going unreported.

Coaches:

I do not believe that coaches/counsellors should provide blanket 'everyone heals' messages. About a month ago, there was even a team discussion about how we should avoid doing this. Firstly, it is a trite message. Secondly, we do not know if it is true. If the client does not improve, this will eat away at trust. However, of course a counsellor should try to be a positive force in their client's life; and help them more forward and reframe their problems.

If your counsellor is an unqualified 'coach', I expect they will regularly fall into all kinds of traps. I strongly recommend that members do not make use of unqualified 'coaches'. And if you feel that your qualified counsellor is lacklustre in performance or is just not a good fit for you (it happens), find another one. A good counsellor (even if not a good fit for you) will understand this and (if possible) will even help you find someone else.

Finally:

Try to step back when you get into an argument at BB (or similar places). Most here are struggling, and we each have differing perspectives. Compromise, and understand that participating at and operating a support space like BB involves many compromises from all of us. BB is not my personal ideal of a discussion space either. Rather, the rules and policies reflect what I think is in the best interests of our wider membership. I must compromise too.

Some of you might find that whole thread interesting. And @[Na...] posted another topic relating to these matters; here's his introductory post - it is well worth a read.

 

On 08/04/2024 at 05:59, [[N...] said:

It's been noticed that the Long Hauler's Group has become more negative as of late. I've gotten a few PMs complaining about that and I don't disagree with the sentiment. Here's a reply I made earlier tonight to one of those emails:

There is an inherent conflict in the Long Hauler's Group - how do we have honesty about the reality that people are dealing with in their struggle with post benzo issues without things getting too negative?

I don't have an easy answer to this.

If I start censoring or shutting down people that are in despair then at some point I feel like I'm sugar coating the situation. On the other hand, all the negativity doesn't help anyone. 

I made a reply this evening in that thread to give my opinion, but it's just that - my opinion. I don't feel like I have any special insight.

The only thing I can do is to encourage people with a more positive outlook to make their voice heard. And I'll tell you from experience that if you try to convince others to be more positive you will find that your own positivity will increase as well.

I don't think there is a long term solution to this conflict in this particular group - I think it will always be here. You've got a lot of people here that have been ill a long time and long term illness breeds negativity. But I agree things have swung too far in a negative direction and that we all need to improve our outlook as best as we can.

I mean that part about there being an inherent struggle in this group. We want to be honest about what we are dealing with. And for some people what they are dealing with is not pretty at all. 

But, relentless negativity will only drag you and possibly others further down. It will help no one. In fact, right at this moment it's probably the worst thing you can possibly do. 

So what do I do? Do I start censoring the group to make this a "safe space"? That just isn't in my nature. I don't feel like that would be honest.

But, we are getting more negative than this group should be and I know that some people are hurting themselves with the negativity and probably hurting other members as well.

So I'm just going to ask everyone to try to curb their negative posts. It'll be better for all of us. I understand there will be times when we need to vent - but let's try to get out of the habit of relentless negativity. 

Feel free to talk about ideas or thoughts on this situation you might have in this thread.