Head pressure

[[Jd...]]

The last time we had this conversation you specifically said I have to say … well exactly what is right here.      
 

I ask you again.   Are you here to help people or just be here and listen to them suffer.  Maybe our agendas are different.   I am mostly healed and am here to HELP OTHERS.   I’m not here to be a shoulder to cry on I’m here to help if I’m able to 

[[Na...]]

@[Jd...] I would like nothing more than if what you suggest turns out to be true and all of us are helped. Most definitely including me.

All I'm doing is reminding people that what you are suggesting is a theory. And we have had no end of theories about what causes our problems and how to fix them. But so far none of them have really panned out. So I'm just reminding people to keep that and everything else in mind. And as all of us that have been here awhile knows, what helps someone might not help someone else. And it might even cause them problems.

There literally is no other agenda than to put that out as a reminder. It is not an attack on you in any way.

 

[[Jd...]]

I really hate to screen shot a private message but I did take their name out.   I don’t claim I know how to fix ALL of the symptoms I only claim I THINK I see something with the head pressure one. That’s if it’s a certain criteria of head pressure.    Here is a message from one of your very own protracted members.   Had skull crushing pressure.  She has suffered for years and now that symptom is down by 50% since just summer.    She is only 1/3rd of the way to the target ferretin level too and I have no idea if the other symptoms will disappear or not. Just felt the head pressure was connected and I what do you know 50% reduction in THAT symptom since summer and still has a long way to go.   
 

are we here to help people or not?

 

[[Co...]]

1 minute ago, [[J...] said:

I never claim to be a dr.   I am a nurse. I am a nurse I am a nurse.  
i 

am 

a

Nurse (they are not the same )

everyone is an individual and this idea that ANY advice given should be stopped because what if.     If someone has a headache and you tell them to take two Tylenol.   There is a chance they may die from it.  Rather low but it’s out there.

The rules, which I understand @[Na...] has sent to you via PM, makes no distinction between doctors and nurses. And, specifically states that the rules apply to medical professionals too.

Quote

Please adopt a non-prescriptive writing style. Relating your experiences, stating options, or posting suggestions of what other members might do are all welcome. However, advising members of what they should or must do is against the ethos of the BenzoBuddies Community. Nor should you attempt to 'diagnose' medical problems or suggest medical treatments to other members. This policy also applies to members with medical qualifications. A more detailed explanation of this policy can be found in our Guidelines Regarding the Giving of Medical Advice document.

I expect that the vast majority of doctors would be ordinarily very careful in the words they would use at BB and similar websites. But too often, we have seen some nurses not be as careful as they should be. I suspect this is because of differences in training, where diagnoses and treatment outside of clinal practice is drummed into doctors as inappropriate. Maybe this is not the case with nurses, or failures in ongoing training for older nurses as the internet has developed. I do not know the cause - it is just an observation.

Irrespective, the rule applies to all members, and all members who are medical professionals.

1 minute ago, [[J...] said:

nathan you took b12 injection and you felt a bad reaction from it.   It’s a shame you didn’t have someone to help you and say.   Well what kind of b12 was it.  Was it cyanocobalmin was it methylcobalmin or was it hydroxycobalmin.   If only there was a dr or even a 🤔 nurse who could explain that there are several types of vitamin b12 injections.   Some of which are well known to cause increase in anxiety.   You probably don’t know what kind you took.  You probably don’t know your genetic mutation status. Are you mthfr positive.  I bet you don’t really know those details and yes do they do matter. But as with Anything the body does work in mysterious ways. Someone can be vitamin d deficient and you tell them to go maybe get some extra sunlight and they either over do it and get burnt and skin cancer or are the oddball that is allergic to the sun.  That is a thing ya know.

Those topics are entirely allowable under our rules. Nearly any topic might be discussed at BB, but we codify 'prescriptive language' - this is not allowed.

1 minute ago, [[J...] said:

The reality is THIS BOARD IS ABOUT HARD FROM A MEDICINE.

I have no idea what that means. A typo, I guess.

1 minute ago, [[J...] said:

It’s rooted in healthcare advice.

No, it is not. BenzoBuddies is a peer-support community. It is not about imparting 'advice' from moderator-to-member, or from member-to-member, or even from healthcare professionals to members. Yours is a basic misunderstanding of what BB and peer-support is about.

1 minute ago, [[J...] said:

 we advise people to not follow their drs orders and taper by a deceased drs manual - isn’t that dispensing ?

No, we do not. Yes, members are sometimes not as careful in the language they use as they should be. And we all might slip up from time to time. But few members do this wilfully, and they almost always acknowledge the fault and the reasons for the policy when we point it out to them. They then usually go on to post less prescriptively.

1 minute ago, [[J...] said:

 Who on here has the credentials behind their name to say “do not taper as fast as your psychologist says.  Follow MY advice”.  No one does

Same as my previous comments.

1 minute ago, [[J...] said:

My advise is about getting blood work.  And educating WHAT each “symbol” means.  Simply knowing what a rdw is does not mean I’m pretending to be a dr.   Nurses are expected to know this.  Maybe not lpn but register nurses like I have been for 17 years.  This is expected knowledge

Avoid giving 'advice'. Carefully worded suggestions are OK. As is relating your personal experiences. Just avoid language which is suggestive of you acting as a de facto doctor.

1 minute ago, [[J...] said:

what’s weird is I SPECIFICALLY told that person to don’t believe me.  Double check what I’m saying.  Make sure I’m accurate.  I mean I know for a fact I’m right but that’s not the point the person I’m speaking to SHOULD NOT be taking my advice nor anyone’s advice as if it’s written in stone.

We do not allow for posts which are prescriptive in nature and then for this to be undone simply by adding 'a disclaimer'. The very nature of the post must be non-prescriptive.

1 minute ago, [[J...] said:

I personally feel you just feel intimidated when someone knows more about a subject than you.  I’m not sure why you’re struggling with this so hard.   This is my job.  I’m expected to know more about this than you.    If you were a mechanic I would expect you know more than me about even my car that I own

Again and again, @[Na...], I, and other others here advise members to discuss with their doctors any ideas discussed at BB. This is because we understand that their doctor is the professional, and maybe the doctor will know specifics about the patient we do not hold anyway. We discuss ideas - we do not issue medical advice.

1 minute ago, [[J...] said:

This advice is about vitamin b12.   Literally over the counter vitamin it’s like giving Tylenol advice.   I don’t care how long you look you can’t find me a death caused by vitamin b12 overdose but Tylenol you can.   I have heard of people dying from drinking too much WATER because it depleted their potassium but never have I ever heard of a b12 overdose.   Most 8 year olds can walk into a store and buy b12 without the person batting an eye

You are being way too defensive. If you would instead post like any other member (that is, like a peer), the problem goes away.

1 minute ago, [[J...] said:

it’s a shame that you would have people suffer and take advice from someone in healthcare just because the things I speak about are above your education level.

We do not vet members, so we cannot know your qualifications. And if we were to verify your identity and qualifications, there is an argument that I would be duty-bound to report you for practicing medicine on random people on a message board.

And before you ask, we have no interest in verifying your credentials, as BenzoBuddies is a peer-support community.

1 minute ago, [[J...] said:

Is this board about helping others or just a place to complain?   I may have some symptoms left but I’m working again. I work full time +. I go on vacations I’m not 100 healed however I have for the most part returned back to a normal life.     I come here to help others achieve that goal as well.    It appears as though you are more concerned with saving face than saving people 

Most members understand very well how to help each other without directing members in their medical care. Your unverified nursing license is not a get out of jail free card.

[[Co...]]

2 hours ago, [[J...] said:

I really hate to screen shot a private message but I did take their name out.   I don’t claim I know how to fix ALL of the symptoms I only claim I THINK I see something with the head pressure one. That’s if it’s a certain criteria of head pressure.    Here is a message from one of your very own protracted members.   Had skull crushing pressure.  She has suffered for years and now that symptom is down by 50% since just summer.    She is only 1/3rd of the way to the target ferretin level too and I have no idea if the other symptoms will disappear or not. Just felt the head pressure was connected and I what do you know 50% reduction in THAT symptom since summer and still has a long way to go.   
 

are we here to help people or not?

Our rules expressly prohibit withdrawal, taper, and medical discussion via the PM system. All such support must occur via threads on the open forums. When you receive such a request for help, you should report it. And you certainly should not respond with 'advice'.

I expect that you received the PM seeking help/advice because you habitually flash your 'I'm a nurse' credentials around and post in prescriptive manner. Seriously - this must stop now.

[[Co...]]

19 minutes ago, [[J...] said:

The last time we had this conversation you specifically said I have to say … well exactly what is right here.      
 

I ask you again.   Are you here to help people or just be here and listen to them suffer.  Maybe our agendas are different.   I am mostly healed and am here to HELP OTHERS.   I’m not here to be a shoulder to cry on I’m here to help if I’m able to 

And what is that, "not advising you what to do though  wink wink", comment. Of course it means the exact opposite.

[[Jd...]]

I feel it’s hypocritical because we all here know we source the Ashton method and we all “help” those tapering by parroting this advice which OFTEN contradicts what their own physician says to do.    You can claim members don’t give advice but it’s just your reluctance to admit that it happens daily / hourly on here.   The Ashton method and how to do liquid tapers and etc etc etc is all dispensing advice and that is just tapering.     People come in her complaining of many many symptoms and they are given advice that it is normal in wd but what if that person was having a heart attack or stroke ?  You literally just told them their symptom is normal and prob will go away in a YEAR and it’s normal.   So you can say that’s not giving medical advice all you want.  But it’s only from your skewed and biased opinion.   I guess it is justified in your opinion because it everyone on here is fairly well versed in withdrawal symptoms but there really isn’t anyone else on here than can confirm nor deny it my advice on b12 is correct. There isn’t anyone else on here that may know is a 160 b12 level really low? Like this guy claims or is he talking out his a””.   But when we give advice like “taper 10 percent of your dose and cut every 2 -4 weeks” it’s the same information that’s been parroted a thousand times. So it’s the norm.  But don’t get it confused as not being medical advice.   It’s just the normal medical advice given.     My advice is not normal because I’m telling people to heaven forbid first rule out medical problems before assuming it’s withdrawal.   Terrible advice 

[[Jd...]]

Me “flashing” my credentials is only meant to indicate.  There is a reason I may understand the relationship between as example a b12 level and a folate level.   Or it’s to explain how I came upon knowing that sometimes a ferretin will look normal when the level is elevated when it’s just inflammation. 
 

and Colin sorry that my private message helped this person pain level decrease by half.      Just think had I realized we can’t give advice via o private message that person would STILL be in excruciating pain

So glad we have you to look out for us all and make sure no one finds any relief 😅 

 

[[Jd...]]

Seriously I had no idea you ALSO can’t give advice in private messages either 

I hate to admit this but I’m did the same 3 other times and those 3 also have much much less symptoms 

should I feel ashamed for doing this?  Broke a rule and now people are in less pain returning to work feeling hopeful and happy and confident again.    
I feel so terrible for doing that 

do you sense the sarcasm ?

[[Co...]]

1 hour ago, [[J...] said:

Me “flashing” my credentials is only meant to indicate.  There is a reason I may understand the relationship between as example a b12 level and a folate level.   Or it’s to explain how I came upon knowing that sometimes a ferretin will look normal when the level is elevated when it’s just inflammation. 
 

and Colin sorry that my private message helped this person pain level decrease by half.      Just think had I realized we can’t give advice via o private message that person would STILL be in excruciating pain

So glad we have you to look out for us all and make sure no one finds any relief 😅 

I receive messages seeking advice quite often. I advise the member to post to the open forum and if they send me a link, I'll take a look. I also remind them of the rules about seeking medical support via the PM system. It is not hard.

[[Jd...]]

Right I get that.   I’m asking you a specific question.   Let’s just use the one I quoted.   She says that pain that she has is HALF of what it’s been for the last several years.   A 50 percent reduction since summer!!!! 
 

are you upset that I gave the very advice that has eased SOME of her suffering  or do you wish i had never opened my mouth?   I really doubt you can answer that question honestly and directly because if you’re glad that I gave the advice you acknowledge that it helped her and the person suffering being lower trumps all other bs we are talking about 

but if you answer you wish I had kept my moth shut you literally admit you care less about the people and helping them ease their suffering than your biased set of rules that only allow dispensing advice that’s typical of advice given here 

[[Co...]]

1 hour ago, [[J...] said:

Seriously I had no idea you ALSO can’t give advice in private messages either 

I hate to admit this but I’m did the same 3 other times and those 3 also have much much less symptoms 

should I feel ashamed for doing this?  Broke a rule and now people are in less pain returning to work feeling hopeful and happy and confident again.    
I feel so terrible for doing that 

do you sense the sarcasm ?

Try this. Go to legal at wherever you work, and inform them that you provide medical advice to anonymous people on the internet as 'a nurse', and do so in private. Oh, and take your union rep with you too, because I think you will have some trouble.

No. You cannot provide medical advice via PM. You cannot provide 'advice', full stop. You can provide support via the open forum spaces.

[[Jd...]]

I ask you Colin.  Do you wish I had never given that girl any advice? Do yo Wish I had followed the rules and only given Ashton manual advice or water taper advice instead of blood work related advice to this girl ?

I sense a reluctance to answer that question with a yes or no

do you wish I had never given her any advice

[[Co...]]

3 minutes ago, [[J...] said:

Right I get that.   I’m asking you a specific question.   Let’s just use the one I quoted.   She says that pain that she has is HALF of what it’s been for the last several years.   A 50 percent reduction since summer!!!! 
 

are you upset that I gave the very advice that has eased SOME of her suffering  or do you wish i had never opened my mouth?   I really doubt you can answer that question honestly and directly because if you’re glad that I gave the advice you acknowledge that it helped her and the person suffering being lower trumps all other bs we are talking about 

but if you answer you wish I had kept my moth shut you literally admit you care less about the people and helping them ease their suffering than your biased set of rules that only allow dispensing advice that’s typical of advice given here 

No, I am 'upset' that you are providing medical advice to anonymous people on the internet who are not your patient. Stop it! Further, you do it in private so that it cannot be scrutinised by others. We have other medical professionals here - they generally do not behave like you.

[[Jd...]]

FYI the lady in charge of my hr dept came to me to ask me for advice for her daughter so bad example

[[Jd...]]

Well at least you answered directly to which I’m shocked.  
you are mad at me for giving this girl the very advice that eased her pain by 50% 

 

let that sink in guys.   Colin is upset that the advice I gave. WORKED

i really have nothing else to add 

[[Co...]]

1 minute ago, [[J...] said:

FYI the lady in charge of my hr dept came to me to ask me for advice for her daughter so bad example

If you are so confident, go to legal and tell them what you have been doing here.

[[Jd...]]

Colin.   Literally when given the choice between helping this girl out and decreasing her pain OR letting her suffer you choose let her suffer 

you and I just are the same.     It’s why you are the profession you are and I feel it’s my obligation and duty to help ease pain and suffering. 

we aren’t the same 

[[Jd...]]

Why don’t you just make it more transparent and make the rule very very plain 

“do not help anyone ..  alll you can do is listen to their pain and suffering and do not offer any advice what so ever because we don’t give advice (even if it would help them just let them lie there suffering)”

Edited December 2, 2023 by [Jd...]

[[Jd...]]

Scoobie it’s quite obvious I’m on the fast track to being blocked.   I do want to help you though.  And I cannot guarantee you this will work but given the risk / benefit of the risk of your arm falling off while getting blood work I do feel the risk vs reward is in your favor for benign advice like vitb12 or iron or folate supplementation.    When blocked from this site by these twats I’ll reach out from a different handle in private message but you’ll know it’s me.   Take care and get those labs talk to you soon

 

—- Dr joe 🙄🤣

jk hr department I never claimed to be a dr that is obvious sarcasm 

 

Edited December 2, 2023 by [Jd...]

[[Co...]]

14 minutes ago, [[J...] said:

Scoobie it’s quite obvious I’m on the fast track to being blocked.   I do want to help you though.  And I cannot guarantee you this will work but given the risk / benefit of the risk of your arm falling off while getting blood work I do feel the risk vs reward is in your favor for benign advice like vitb12 or iron or folate supplementation.    When blocked from this site by these twats I’ll reach out from a different handle in private message but you’ll know it’s me.   Take care and get those labs talk to you soon

—- Dr joe 🙄🤣

jk hr department I never claimed to be a dr that is obvious sarcasm 

Oh dear.

[[Jd...]]

Colin.   It’s quite obvious you are VERY dedicated to ensuring no one gets any advice other than the typical “just sit and wait and wait and wait some more.  If it’s been 10 years who knows it might take 10 more.  Don’t do anything besides wait. 
and anyone who suggests anything other than that it’s obvious you will make sure to silence them. even if it’s.  ADVICE like sceen yourself to make sure you don’t have an iron b12 or folate deficiency 

you already proven you would have preferred that girl to suffer than for me to give the very advise they took away pain 

And in your world you think I need to re evaluate MYSELF 

[[Jd...]]

I’m actually a little ashamed now to even be a part of this group that would choose to allow a person to suffer just so we can all claim to not give advice.    And you think that I should be ashamed to have helped her out smh

i think you need to re evaluate what your priorities.  Are they truly to help others 

mine are 

[[pi...]]

1 minute ago, [[J...] said:

I’m actually a little ashamed now to even be a part of this group that would choose to allow a person to suffer just so we can all claim to not give advice.    And you think that I should be ashamed to have helped her out smh

i think you need to re evaluate what your priorities.  Are they truly to help others 

mine are 

I would be more ashamed if one of our members was injured following the advice of an unknown person on an Internet forum, doctor, nurse or any other person who promotes themselves as a medical expert. 

[[Jd...]]

But what if piano girl that advice didn’t hurt.  What if.   Well let’s stop with the hypothetical.    It indeed DID help.   It helped decrease someone’s pain who has had this pain for many years and in 3 months time it was cut in half.    Should we not be entertaining the possibility that this may be a real thing?