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It's a shame we don't have medical professionals checking in here


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It's very odd that there are apparently so few doctors that check in here.

 

I used to be a chronic pain patient (I'm one of the few that got better btw).  That's how I ended up on lunesta.  I used to frequent chronic pain forums.  There were usually several pain doctors that frequented those forums and they were quite helpful.

 

There seems to be a total absence of doctors here.

 

We did have Perseverance, who was apparently some sort of medical professional (I'm not sure of the details).  She came here because of her own ordeal with benzos, but she was so helpful to so many here as evidenced by all the pinned topics she was responsible for at the top of this forum.  Thankfully she seems to have healed and moved on, but she's left a hole that no one else has filled.

 

It almost feels like the medical profession has deserted us, which is a bit cruel given that they were in most cases the ones that gave us these drugs in the first place.

 

 

 

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We still have a few medical doctors on here, but some choose not to identify themselves as such, they are here for support.
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I think my doctor looks at this forum because I mentioned it to her. But she wants me off of it, probably because it made clear to me how much damage benzos did to me and how she utterly failed to recognize the side effects I was experiencing and when I hit tolerance. Early in my taper, as my body went haywire with symptoms, my doctor kept telling me that the symptoms were not part of withdrawal, even though they were typical of the symptoms I was reading about on this forum. Many doctors don't like BB because it exposes their incompetence.

It's very odd that there are apparently so few doctors that check in here.

 

I used to be a chronic pain patient (I'm one of the few that got better btw).  That's how I ended up on lunesta.  I used to frequent chronic pain forums.  There were usually several pain doctors that frequented those forums and they were quite helpful.

 

There seems to be a total absence of doctors here.

 

We did have Perseverance, who was apparently some sort of medical professional (I'm not sure of the details).  She came here because of her own ordeal with benzos, but she was so helpful to so many here as evidenced by all the pinned topics she was responsible for at the top of this forum.  Thankfully she seems to have healed and moved on, but she's left a hole that no one else has filled.

 

It almost feels like the medical profession has deserted us, which is a bit cruel given that they were in most cases the ones that gave us these drugs in the first place.

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It's very odd that there are apparently so few doctors that check in here.

 

I used to be a chronic pain patient (I'm one of the few that got better btw).  That's how I ended up on lunesta.  I used to frequent chronic pain forums.  There were usually several pain doctors that frequented those forums and they were quite helpful.

 

There seems to be a total absence of doctors here.

 

We did have Perseverance, who was apparently some sort of medical professional (I'm not sure of the details).  She came here because of her own ordeal with benzos, but she was so helpful to so many here as evidenced by all the pinned topics she was responsible for at the top of this forum.  Thankfully she seems to have healed and moved on, but she's left a hole that no one else has filled.

 

It almost feels like the medical profession has deserted us, which is a bit cruel given that they were in most cases the ones that gave us these drugs in the first place.

 

Clearly most of the Medical Professionals are in complete denial that there is a problem at all.  The only people who have clear unadulterated knowledge are the ones like us who have experienced the horror of it all  :thumbsup:

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We still have a few medical doctors on here, but some choose not to identify themselves as such, they are here for support.

 

I appreciate that they wouldn't want to identify themselves, but there are people here with questions that the average layperson can not easily answer.

 

There are people here with unusual symptoms (even more unusual than the average withdrawal symptom) like myself.  We are slowly churning through the medial system getting increasingly expensive and more invasive tests.  Many, maybe most, of these tests are unnecessary because whatever issue they are trying to track down are ultimately withdrawal related.  But, because we just don't know we go through the process.

 

If you had a doctor that has seen a fair number of benzo/z-drug withdrawals he might say "I don't know what is causing your symptoms, but I can tell you that I have (or have not) seen similar symptoms that ultimately resolved themselves which I attribute to the withdrawal process". 

 

Absent that, we either take the risk of missing something important or we continue to move through the clinical process, burning up resources and even subjecting ourselves to unpleasant or even somewhat risky procedures. 

 

The medical profession has done a frankly lousy job of informing us of the consequences of the use of these medications and their withdrawal.

 

 

 

 

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Why would a doctor come here unless they are sick themselves? Most of them don't even acknowledge this is a real thing.
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Why would a doctor come here unless they are sick themselves? Most of them don't even acknowledge this is a real thing.

 

You are right, there's no need for them to come here unless they are sick themselves. I've met several docs on the boards, nurses, etc, including myself who were unaware just how dangerous these drugs really are. It's not taught in medical school that the withdrawal syndrome can be so severe. Otherwise I wouldn't be on this board. I personally don't try to hide or advertise the fact that I am a doc. I'm just another person in the trenches with you guys looking for support. I don't want to give out medical advice to people I've never physically examined, and neither should any other doctor (plus it is against forum rules). Honestly I would be leery of a healthy doc that showed up on a board like this as they just might be trolling for patients to build their practice. If you want to read my story and thoughts, here it is:

 

http://www.benzoinfo.com/single-post/2016/10/15/An-Open-Letter-Cardiologist-and-Cancer-Survivor-Speaks-Out-on-Dangers-of-Benzodiazepines-and-Her-Personal-Withdrawal-Story

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Thank you for sharing the link, Hope.  I'm so sorry you've had to suffer this way - this is terrible for all of us.  Thank you for being brave enough to put a human face on the medical community.  I was angry at my MD at first, but realize that she meant me no harm, she really didn't know.  I can't blame her any more than I can blame my own ignorance.  I hope that by shining the light, others can avoid this suffering.  I'm sure there are appropriate circumstances and uses for benzos, but none of us should have been given prescriptions for these drugs month after month, and year after year. 
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Every time I have a session with my pdoc, we log onto BB and he reads some of the stories to get a better understanding of what WE are going through as he told me he can't fully understand because he has not gone through this process like we are. Good for him! :thumbsup:
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Every time I have a session with my pdoc, we log onto BB and he reads some of the stories to get a better understanding of what WE are going through as he told me he can't fully understand because he has not gone through this process like we are. Good for him! :thumbsup:

 

That is awesome Bets! I have mentioned this site to my pdoc but I'm pretty sure he's never been on it. I'm going to attempt to educate him more once I'm done tapering, but for now I need my scripts to taper and don't want to tick him off.

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Every time I have a session with my pdoc, we log onto BB and he reads some of the stories to get a better understanding of what WE are going through as he told me he can't fully understand because he has not gone through this process like we are. Good for him! :thumbsup:

 

That is awesome Bets! I have mentioned this site to my pdoc but I'm pretty sure he's never been on it. I'm going to attempt to educate him more once I'm done tapering, but for now I need my scripts to taper and don't want to tick him off.

 

I agree. Perhaps later you get get him to see some messages here. My pdoc was reluctant until he was not reluctant...Now he knows a lot more. BB is better than any seminar.

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Why would a doctor come here unless they are sick themselves? Most of them don't even acknowledge this is a real thing.

 

You are right, there's no need for them to come here unless they are sick themselves. I've met several docs on the boards, nurses, etc, including myself who were unaware just how dangerous these drugs really are. It's not taught in medical school that the withdrawal syndrome can be so severe. Otherwise I wouldn't be on this board. I personally don't try to hide or advertise the fact that I am a doc. I'm just another person in the trenches with you guys looking for support. I don't want to give out medical advice to people I've never physically examined, and neither should any other doctor (plus it is against forum rules). Honestly I would be leery of a healthy doc that showed up on a board like this as they just might be trolling for patients to build their practice. If you want to read my story and thoughts, here it is:

 

http://www.benzoinfo.com/single-post/2016/10/15/An-Open-Letter-Cardiologist-and-Cancer-Survivor-Speaks-Out-on-Dangers-of-Benzodiazepines-and-Her-Personal-Withdrawal-Story

 

 

What a powerful story.  Truly sorry you had to go through that - breast cancer and benzo withdrawal at the same time ..... horrible.

 

What is interesting to me is that you, with your medical degree and prestigious specialty *still* got some of the dismissive attitude that the vast majority of us get when we bring up these issues with our doctors.

 

The other day I was in my hematologist's office.  We've been trying to chase down the reason why my hemoglobin suddenly went high since the beginning of last year.  I've had thousands of dollars of genetic tests looking for primary polycythemia vera - all so far negative.  Scores of other blood tests - when I go into this office they normally take about six vials before I get to see the doctor.  Now he's setting me up for a sleep study in spite of the fact I'm not over weight, my wife says I don't snore (I sleep on my stomach), and I don't have any other symptoms of apnea.  If *this* test comes out negative he wants to repeat the genetic PV tests but this time on bone marrow because there is a very small chance it might give him a different answer than the blood test.

 

So, I *really* don't want a bone marrow biopsy. I steel myself .... I'm gonna bring it up.  I'm going to ask him - could it be the lunesta that I stopped right before this showed up?

 

I do it.  He looks at me like I'm from Mars.  "No, it can't be that. You've been off it more than long enough to get it out of your system".  But I say, I've talked to other people that have seen their hemoglobin go high after jumping off this and similar drugs and likewise their doctors couldn't find any reason for it.  "What, did you get this off some sort of blog?" he says dismissively ... almost contemptuously. 

 

And the worst part of this is this causes me to question everything.  Could this still be the effect of withdrawal so long (20 months) after quitting?  Maybe I'm just crazy or neurotic.  Maybe this is some other really serious thing going on with my hemoglobin.  If this isn't the withdrawal, what other horrible thing can this be.  Maybe I'm just a broken screwed up person that has fooled himself into believing this is the result of a drug I quit taking almost 2 years ago.

 

And the attitude .... he clearly thinks I'm some sort of idiot for even asking the question.

 

 

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I've had the same response from a doctor, Nathan. When I was put on pills I wasn't used to, my platelets suddenly went up to 1.8 million, when the previous test showed them at something like 698,000. When I mentioned that it could have been all the drugs I was put on causing it, he looked at me like I was crazy and said an emphatic no. This from a Stanford medical doctor. My platelets went down as those pills went out of my system. It took awhile, though, and the last time they were 550,000.

 

I've discovered during this process that some of us have "highly reactive blood," probably as a result of benzos. So some pills will cause this.

 

This is all my opinion from what I've gone through.

 

I think your hemoglobin will naturally come down, but doctors want to do extra tests, not believing that the body is just trying to balance itself out.

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Bets, that is wonderful about your doctor!! You did it, though, you're schooling him. Good for you!!! :thumbsup: :thumbsup:
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Bets, that is wonderful about your doctor!! You did it, though, you're schooling him. Good for you!!! :thumbsup: :thumbsup:

 

Thanks. But he already knew a lot, but not about BB. He tells me to keep logging on here and report back some of the strange symptoms I have seen here. :) He does find some of them odd, but then again so do I. ;)

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Are the older doctors worse than the younger ones ?

 

In my experience the opposite.

 

This is an issue of arrogance.  Arrogance and youth tend to travel together.  Age and experience tend to humble many (but not all) of us up.

 

What little luck I've had talking about this with doctors (and I've only tried three) I had more success with an older doctor (late 60s).

 

The hematologist I talked to about this the other day is the youngest and I probably got the most dismissive response from him.

 

 

 

 

 

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Are the older doctors worse than the younger ones ?

 

I think the older ones are better. Hands on learning is much more important than any book. Mine is 71 years old and I love him. He's seen it all.

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(locally) I read that in modern medical eduction students/doctors in training were taught more about discontinuing prescription drugs, and problems with prescription drugs.

 

I'm not sure what that's worth.

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We did have Perseverance, who was apparently some sort of medical professional (I'm not sure of the details).  She came here because of her own ordeal with benzos, but she was so helpful to so many here as evidenced by all the pinned topics she was responsible for at the top of this forum.  Thankfully she seems to have healed and moved on, but she's left a hole that no one else has filled.

 

 

Perseverance wasn't a medico, she was an Electrical Engineer.  :) 

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(locally) I read that in modern medical eduction students/doctors in training were taught more about discontinuing prescription drugs, and problems with prescription drugs.

 

I'm not sure what that's worth.

 

I have a friend who is a rather new MD. Went to an Ivy League School. I asked him is there was a class that talked about benzo tapering and he said no. The only thing other doctors told him (he's an ER doc) was that if a patient asks for a benzo, give it to him. If you don't it's considered bad medicine. ::)

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I wasn't even talking about tapering benzos, more about risks of drugs given to patients and taking that into account.

 

'The only thing other doctors told him (he's an ER doc) was that if a patient asks for a benzo, give it to him.' Are you sure you understood ? It doesn't make any sense. Give everyone who asks for a benzo a benzo ? If there is a medical indication that's one thing ...

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