Head pressure

[[Jd...]]

Heaven forbid anyone have any hope. You can “what if” this to death.   There is no what if

its past tense.  It did help!

but let’s squash it quickly before anyone even gets an ounce of hope 

smh terrible 

[[Jd...]]

And see.  As expected.   I’ve checked and now I can’t send emails.  Colin literally just restricted the use of my emails to help the very girl who’s pain has now been decreased by halfway 

It’s already been established that my advice not only didn’t harm her but it helped her.   And he wants to ensure I can’t help her anymore 

call me paranoid but Colin??? How much big pharma payin you these days?

or is it you get any financial incentive through advertising that warrant silencing anyone that may offer some people a way out and to help them heal ? 
seems awful suspicious to silence a person who has a proven track record of helping SOME very specific members

colin / big pharma I’ll just make another account 

[[pi...]]

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

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? 

No and no. There are many medical providers in our family, and our friend group also has medical professionals in it. Their suggestion would urge the person to see a physician or care provider. There are ethics involved here, I’m sure the board would not look highly on your behavior here on the forum. You are lucky you can remain anonymous.

 

[[Jd...]]

Telling sick people to investigate their blood work and not rule out a medical diagnosis is not beyond my scope of practice.  I am NOT prohibited from giving advice.  I am not allowed to tell people to change the doseage on their prescription medication ie benzo tapering advice like commonly seen on here.   But what I am allowed to do is if I hear someone suffering from symtoms to suggest diagnostic testing. Ie bloodwork    I am fully allow to suggest they ask their dr for an iron panel or b12 or folate test.     You do realize that lab tests do require a dr order right ?

so when I say “I think you should get an iron tibc iron sat and ferretin”.  You HAVE to have a conversation with your dr because he or she HAS to order it 

so I’m glad that you THINK you know what my scope of practice is but you don’t.   
you have never seen me tell someone to discontinue their remeron or benzo etc etc 

my advice is over the counter stuff as well as diagnostic stuff.   
Stick to your greys anatomy research

[[Jd...]]

Piano girl.    I wanna test your integrity with this question.    If someone gave you advice that DID decrease your suffering would you be happy about it ?     Just an honest question  wondering if you can answer honewtly

if someone gave you advice you then followed it and it did indeed work and decrease your suffering   Would you be happy about it?

[[Na...]]

1 minute 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!!!! 
 

JDoe, I'll drop in to say that I hope to god that she's found something that helps her. Fantastic.

But I'll tell you from my own personal experience and that gleamed from the forum for a decade that the placebo effect is real. That's why the medical research community does RCTs (randomized controlled trials) where ideally both the patient and the doctor are blinded as to whether they are getting the active compound and there is a control group.

I can't tell you how many times I've fooled myself into thinking some treatment I've attempted was working. It held for a time. And if you look around the site you'll see all sorts of declarations of "Eureka! I've found it!" where someone think they have found the solution. But, if you check back 6 months later they are still searching for help because whatever they thought was working didn't work long term. I've done it myself. I know there are post I made years back in the Alternative Treatment forums where I said "Hey, I've been trying this and I think it's working". Only that didn't turn out to be true because I'm still here trying to get better. And I've had people come back to me that found those posts years later where I had to disappoint them by telling them that whatever I was doing didn't ultimately turn out.

It got to the point that I've created a rule for myself that I won't discuss some treatment in the forums that I think is working until several months have pasted because I don't want to get people's hopes up only to have them dashed. It's not fair to them. Unfortunately since creating that personal rule I don't think I've really talked much about anything because nothing I tried passed the test.

So you can't use a single instance of a positive result as evidence that what you're suggesting works. It is a type of evidence, but you really need to look at it long term and even then you have no idea if that person was destined to get better no matter what was attempted. Hence the reason behind those RCTs.

 

 

[[Na...]]

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

Heaven forbid anyone have any hope. You can “what if” this to death.   There is no what if

its past tense.  It did help!

but let’s squash it quickly before anyone even gets an ounce of hope 

smh terrible 

 

That's a hell of a thing to say. This forum was created by someone (Colin) that's been through this and he built the site to try to help others out.  All the other mods have been through benzo withdrawal. I personally have been looking for a solution for almost 9 years now. If someone found something that worked I'd be shouting it from the rooftops.

But it doesn't occur to you that maybe people that have been here for awhile have seen a lot of things attempted over the years and how they worked out and they are doing their level best to manage the site in a way that helps the most and does the least harm. Maybe they or I get it wrong every now and them, but there certainly is every intention to do what is best.

You really need to take this less personally. All that has been asked of you is to change the tone of your posts. That doesn't seem to be a lot to ask.

[[wa...]]

OK -- I haven't been on in awhile and just scrolled through this.  JDoe -- I am sorry you have a need to post in a prescriptive manner and for some reason need to make demands of the admin and mods without a genuine desire for clarification.  Colin and Nathan have done their best at making you apprised of the rules and I find that they were very patient and courteous.  I encourage you to take a break, regroup and see this forum as a resource for yourself.  I have licenses and creds, too, but know BB is not the place to assert expertise whether I think I have it or not.  Prescriptive advice is dangerous here.  Perhaps you can ask yourself if you can you just be a peer.

 

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

[[Co...]]

54 minutes ago, [[w...] said:

OK -- I haven't been on in awhile and just scrolled through this.  JDoe -- I am sorry but it that you have a need to post in a prescriptive manner and for some reason need to make demands of the admin and mods without a genuine desire for clarification.  Colin and Nathan have done their best at making you apprised of the rules and I find that they were very patient and courteous.  I encourage you to take a break, regroup and see this forum as a resource for yourself.  I have licenses and creds, too, but know BB is not the place to assert expertise whether I think I have it or not.  Prescriptive advice is dangerous here.  Perhaps you can ask yourself if you can you just be a peer.

Thank you, @[wa...]

This is basic stuff, really. It should not need to be explained to a medical professional, and the normal reaction if called out on this should be a mea culpa and an unequivocal offer to not behave similarly in future.

I think BB is more careful than many other sites dealing with medical matters and illness. We try to provide a platform where people share information, ideas, experiences, or even carefully worded suggestions on occasion. But providing medical advice, even if the member is medical professional, is plain wrong for several reasons: it is almost always a professional or ethical violation; we do not vet members for the authenticity of claimed expertise; it is against our rules. And to do this via the PM system is worse, as this means the advice is not even subject to review by other members.

[[Co...]]

I also wished to add that @[Na...] was extremely patient and politic in how he addressed this matter with @[Jd...] - much more so that I probably would have been. That Nathan was ignored and his points rubbished is why I responded. I am almost entirely recovered from my use of benzodiazepines, and have been for very many years. Nathan's struggles continue ,and yet he took on the responsibility of operating this important group. He deserves more respect and appreciation than he received from @[Jd...] - I do not mean as group leader or as a moderator, but as another member still in the thick of it and helping others anyway.

[[pi...]]

13 hours ago, [[C...] said:

I also wished to add that @[Na...] was extremely patient and politic in how he addressed this matter with @[Jd...] - much more so that I probably would have been. That Nathan was ignored and his points rubbished is why I responded. I am almost entirely recovered from my use of benzodiazepines, and have been for very many years. Nathan's struggles continue ,and yet he took on the responsibility of operating this important group. He deserves more respect and appreciation than he received from @[Jd...] - I do not mean as group leader or as a moderator, but as another member still in the think of it and helping others anyway.

Well said Colin!

[[Sc...]]

On 06/11/2023 at 22:00, [[j...] said:

I’ve had this since my very first reaction to the antibiotic in 2020 and it has persisted through my benzo injury and subsequent withdrawal and protracted wd. 
 

mine seems to be exacerbated by heat or any heavy lifting or over exertion. Oftentimes it’s random. Sometimes it feels like pressure, squeezing, other times head, stabbing/knives/drilling. I also get brain waves or shudders and extreme vice like tightness Around my head, neck, shoulders and back I get the similar burning and vice like tightness. 
 

the soles of my feet ache too and sometimes I get hip issues and sciatica. 

lately my migraine with auras are back too!

I’m only 32 and my body feels so disabled and decrepit some days. I’ve had these symptoms now for 3.5 years. Have people healed from them? What causes them?! Is there still some chance they can get better after all this time. I am 29 months benzo free now. 18 months since an antibiotic setback. 
 

Does yours come and go or is it constant?. Are you able to work/function?. Does it feel like the muscle squeezing your head?.

[[jo...]]

@[Sc...] mine come and goes but it comes multiple times a week if not daily. Usually by the end of the day. I can’t work. I function like a deeply sick person. Most things are hard. It feels like squeezing, knives, nerve pain all mixed into one 

[[mr...]]

I have never had a headache in my life until i started doing benzos I have the same haed pressure you are talking about its ruining my quality of life for sure.

TWO YEARS SINCE I DONE ANY BENZO PILLS

I just wish it would go away,

[[Co...]]

On 08/12/2023 at 14:54, [[m...] said:

I have never had a headache in my life until i started doing benzos I have the same haed pressure you are talking about its ruining my quality of life for sure.

TWO YEARS SINCE I DONE ANY BENZO PILLS

I just wish it would go away,

It would be sensible to have this checked out - there are numerous possible causes of headaches of course.

I suffered from headaches post withdrawal for many years. (I did see my GP to make sure there was nothing else going on). I was eventually prescribed co-codamol, which helped. But as with any kind of opiate, habitual use can develop into its own dependency. (This was not a problem for me - I could stick to occasional use - but it might be a problem for others). And Co-codamol will become ineffective if taken regularly.

[[mr...]]

11 hours ago, [[C...] said:

It would be sensible to have this checked out - there are numerous possible causes of headaches of course.

I suffered from headaches post withdrawal for many years. (I did see my GP to make sure there was nothing else going on). I was eventually prescribed co-codamol, which helped. But any kind of opiate, habitual use can develop into its own dependency. (This was not a problem for me - I could stick to occasional use - but it might be a problem for others). And Co-codamol will become ineffective if taken regularly.

for sure doing this, but i never had headaches at all until i tried benzos.

[[Sc...]]

I went to acupuncture today it did nothing. What a waste of money. These head symptoms are drug torture, probably designed that way to damage peoples brains for more profits.