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(04-21-2019, 04:14 PM)Satin Scene Wrote: (04-07-2019, 08:36 AM)invisiblejungle Wrote: (03-22-2019, 08:17 PM)Satin Scene Wrote: This recently came to my attn also as I am struggling hard after 4 months off a certain B mag from a vendor no longer present but one we all know . I went to this vendor for a very tough taper for some years. I am now 100% disabled, will be in a wheelchair for life , my autonomous nervous system is broken so if I stand my heart can no longer pump blood from the lower part of my body to my head so my heart will now beat up to 168 bpm to try , It goes back to nearly normal now sitting and laying and when I walk it will range from 45-113 but I cannot walk all over all of the time .. At first I could not even sit up . My heart rate stayed over 113 for 2 months straight. I can now swallow again also , and I have started to eat food again as it completely stopped my digestion but it is slow going, my bladder failed and I have to be straight cathed by my nurse husband as I cannot eliminate at all , BP has been very low at 80/50 but is trying to stabilize at 98-102/70 now ..usually . I lost 40 lbs without trying and my hair which was down past my waist and thick came out by the handful's . The suffering is horrendous . I did the taper correctly VERY slow and still I am destroyed . The taper ended in Nov and we are finding out about this now and I am certainly wondering . My GP says this is one of the worst cases of B poisoning he has ever seen in his career .So I don't know. I'd be hard pressed to take a baby aspirin after this . I wondered if this had been talked about here and I see that it has . Sorry for the TMI but yeah , I'd say get a kit and make sure , I wish I had .
Hi Satin, so very sorry to hear about your condition. I can somewhat understand since I've been disabled for over 10 years, and autonomic dysfunction is one of my issues.
Do you mind me asking about your situation? It sounds like you have post-orthostatic tachycardia syndrome. Did your symptoms begin during the taper or only after you were completely off? When you say "B mag," are you referring to benzos or something else? Just wondering because I take benzos for my health condition, and someday I hope to be able to get off them, so I try to gather as much info as possible.
Feel free to PM me if you'd rather not discuss it publicly.
Oh it is ok , I just have been so sick that I am off and on , I came here today to check so that I would not seem rude .
My wheelchair came this week , pearl white and custom , it is a sports wheelchair so it is very sleek and not scary looking and I decorate it with colored push rims and spoke skins .. and We are finally leaving this small town where my husband had a temp nurses job and I got so sick we couldn't go anywhere . ZERO medical care here , one GP told me I was going to have to go back to civilization to be able to find someone knowledgeable in what is going on with me and I pretty much knew this but am SO GLAD to be going back home .
Thank you invisible , I am still just taking it day but day . Yes I do have POTS. It had been fair during the day at 80-101 standing nd I thought I was better until yesterday when standing it was just insane 120-148 again . I am so tired of this . Almost 5 months now . 80-90 sitting up . Today it is a but lower . My normal was 65 -67. I know the range is 60-100 but that is not my range . My stomach issues are still very difficult and I was having shortness of breath yesterday with the POTS also . In answer to your question yes it was the beast of the benzos klonopin . If you look around the recovery forums you will see that most of us with this issue have been on that benzo. A GP mis prescribed it when my gall bladder burst years ago ,many years . and the phenergen stopped working . Such a HUGE dose that I could not find any MD to help me with a taper so I had to do it myself . 5 years long and this happened the day after my last dose . It just trashed my autonomous nervous system. This seems t happen to those of us that have been on too high an rx for way too long . I did not have a clue about this F issue .
@Noel I should have started testing last year when a co worker of my husbands ran out and had to borrow one of mine to keep from getting sick and he became very ill the next day . I was just so sick in tolerance that I could not have been able to tell the difference .
Oh my god, you tapered for 5 years and this still happened?? Ugh, that is unbelievable. You did everything right... Do you mind me asking exactly how much Klonopin you were taking?
I'm very familiar with POTS, since autonomic dysfunction is one of my main issues. If you haven't already, I recommend reading this short guide by Dr. Peter Rowe, a dysautonomia specialist:
http://www.dysautonomiainternational.org...ummary.pdf
It lists many treatments that most doctors are not aware of.
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(05-03-2019, 05:50 PM)invisiblejungle Wrote: (04-21-2019, 04:14 PM)Satin Scene Wrote: (04-07-2019, 08:36 AM)invisiblejungle Wrote: (03-22-2019, 08:17 PM)Satin Scene Wrote: This recently came to my attn also as I am struggling hard after 4 months off a certain B mag from a vendor no longer present but one we all know . I went to this vendor for a very tough taper for some years. I am now 100% disabled, will be in a wheelchair for life , my autonomous nervous system is broken so if I stand my heart can no longer pump blood from the lower part of my body to my head so my heart will now beat up to 168 bpm to try , It goes back to nearly normal now sitting and laying and when I walk it will range from 45-113 but I cannot walk all over all of the time .. At first I could not even sit up . My heart rate stayed over 113 for 2 months straight. I can now swallow again also , and I have started to eat food again as it completely stopped my digestion but it is slow going, my bladder failed and I have to be straight cathed by my nurse husband as I cannot eliminate at all , BP has been very low at 80/50 but is trying to stabilize at 98-102/70 now ..usually . I lost 40 lbs without trying and my hair which was down past my waist and thick came out by the handful's . The suffering is horrendous . I did the taper correctly VERY slow and still I am destroyed . The taper ended in Nov and we are finding out about this now and I am certainly wondering . My GP says this is one of the worst cases of B poisoning he has ever seen in his career .So I don't know. I'd be hard pressed to take a baby aspirin after this . I wondered if this had been talked about here and I see that it has . Sorry for the TMI but yeah , I'd say get a kit and make sure , I wish I had .
Hi Satin, so very sorry to hear about your condition. I can somewhat understand since I've been disabled for over 10 years, and autonomic dysfunction is one of my issues.
Do you mind me asking about your situation? It sounds like you have post-orthostatic tachycardia syndrome. Did your symptoms begin during the taper or only after you were completely off? When you say "B mag," are you referring to benzos or something else? Just wondering because I take benzos for my health condition, and someday I hope to be able to get off them, so I try to gather as much info as possible.
Feel free to PM me if you'd rather not discuss it publicly.
Oh it is ok , I just have been so sick that I am off and on , I came here today to check so that I would not seem rude .
My wheelchair came this week , pearl white and custom , it is a sports wheelchair so it is very sleek and not scary looking and I decorate it with colored push rims and spoke skins .. and We are finally leaving this small town where my husband had a temp nurses job and I got so sick we couldn't go anywhere . ZERO medical care here , one GP told me I was going to have to go back to civilization to be able to find someone knowledgeable in what is going on with me and I pretty much knew this but am SO GLAD to be going back home .
Thank you invisible , I am still just taking it day but day . Yes I do have POTS. It had been fair during the day at 80-101 standing nd I thought I was better until yesterday when standing it was just insane 120-148 again . I am so tired of this . Almost 5 months now . 80-90 sitting up . Today it is a but lower . My normal was 65 -67. I know the range is 60-100 but that is not my range . My stomach issues are still very difficult and I was having shortness of breath yesterday with the POTS also . In answer to your question yes it was the beast of the benzos klonopin . If you look around the recovery forums you will see that most of us with this issue have been on that benzo. A GP mis prescribed it when my gall bladder burst years ago ,many years . and the phenergen stopped working . Such a HUGE dose that I could not find any MD to help me with a taper so I had to do it myself . 5 years long and this happened the day after my last dose . It just trashed my autonomous nervous system. This seems t happen to those of us that have been on too high an rx for way too long . I did not have a clue about this F issue .
@Noel I should have started testing last year when a co worker of my husbands ran out and had to borrow one of mine to keep from getting sick and he became very ill the next day . I was just so sick in tolerance that I could not have been able to tell the difference .
Oh my god, you tapered for 5 years and this still happened?? Ugh, that is unbelievable. You did everything right... Do you mind me asking exactly how much Klonopin you were taking?
I'm very familiar with POTS, since autonomic dysfunction is one of my main issues. If you haven't already, I recommend reading this short guide by Dr. Peter Rowe, a dysautonomia specialist:
http://www.dysautonomiainternational.org...ummary.pdf
It lists many treatments that most doctors are not aware of.
Checking in again to see if anyone had any questions. It was hot here yesterday and that is unusual , when I tried to walk my HR went to 148. I had to sit down and it struggled to stay under 90 . Until I got home in the ac and reclined/laid down.
I had been placed on X after my surgery . I CT'ed it in 05 . Became deathly ill and went back to the Dr, He said this was not W/D but MS or maybe even a nervous breakdown ( it was W/D ) . I had no mental issues before . So he put me on a gradually escalating dose of X and the Klonopin up to finally 8 mgs a day for the last 10 years .
Five of those were in taper and I am 5 months out . The dr here wonders if I am going to have to be put back on Valium to be able to live halfway normal . I do the salt and water treatment but that does absolutely nothing and I am not drinking a gallon of water a day . 2 liters is overwhelming . Id rather just stay in my wheelchair . My gut is awful too . I had severe ibs-c before and had to take rx lax's but now have to take 4-10-15 of them instead of 3 . I am dead on the inside . Nothing works .Bladder sort of works now . I will be glad to read the link . When I get back they have a dysautomnia clinic at UCLA where hopefully someone can see this is not panic . I do NOT want to go on V but if they force it or I get much worse I will be on for life . I will not be doing this again, I am too old and it has been the most horrible experience of lifetime . I thought I was going to improve my life , not trash it . I am terrified of everything including rooms of the house and food and other things . It is just stupid the fear you have when you stop this class . Very terrified of my apt .
Thank you Charon , I am still hanging in , less than a month to go . I think I will improve by getting out of here . I am very depressed here .
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I am so sorry for the hell that was caused in your life.
hold on precious. get back to civilization and get help.
can u try to listen to music to calm down in ur apt?
I am so sorry and I pray u do get out soon and get the appropriate care.
I shall just look this up so i have some knowledge of it. i focused on cancers and autoimmunes.
Hold on, precious. It is about to all work out well for u both. God bless you. May He grant you total respite from fear and pain and ur body refusing to cooperate with u.
 It is Well with My Soul
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05-20-2019, 04:31 PM
(This post was last modified: 05-20-2019, 05:01 PM by Charon.)
I recently watched a special regarding fake drugs which were manufactured with fent in them. Prince was taking what he thought was perc, but the pills had fent in them instead. They said it was an overdose of fent that killed him. In addition, there was a college student, who never used drugs, who took .25 mg of X to help him sleep for one of his final tests at school. He also died. They described how some guy in Florida bought a pill press and bogus plates to stamp the pill identifier on them. He was manufacturing all sorts of fake drugs which did not include the marked ingredient, but fent instead. When you buy off the streets, you never know what your are getting.
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You will find threads on here regarding testing kits for this issue.
Lets not put the full name of med in open forum. Use abbreviations please. Search engines will post what u just said.
Everything we say is read. We must not bring attention to our wee family forum.
But Yes you will find many news reports on this matter. Repeat clients are not needed we read. They are making a fortune. At the same time regular doctors told their patients I am cutting you off your meds. So, it is tragedy that has been happening and is continuing.
We have a thread on test kits for people whom do order meds.
 It is Well with My Soul
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CHARON thank heavens for people like you. The amount of time and effort and empathy you give to people amazes me to no extent. And I simply don’t understand how a few doctors don’t read some of these threads, as even though they are doctors, This is what they do for a living. you can never know too much about your profession, which in this case; mainly features patients and medication. And the board sets such a good example and shows empathy can go such a long way. and I have never seen anyone falsely claim to be a doctor, and example; C always makes that 100% clear that your best option is to first check with your doctor. that is if you trust your doctor.
I don’t understand why, why the system says your health insurance will cover it, only to get a bill for thousands later. Why they prescribe you something and then treat you like a criminal after they’ve prescribed. Or the look pharmacist might give people. Luckily I’ve use the same pharmacy for years. unfortunately there seems to be a negative vibes in this country, and a lot of it starts online. So when you see a board like this and you read all the great posts, well it starts with the mods, and even though I haven’t been in the lounge much lately, I love the music, and I’m getting off topic but my main point is we are very lucky to have this place.
bottom line thank you Charon. You are the real deal. And that goes for all the mods on this board. Much of the Internet brings out the worst in people, but this board brings out the best in people. so thanks to everyone from the mods to the newbies; we will get by wewill survive.
And just so I’m staying on topic, even though the logistics can be a bit complicated, although within reason as it does take a little effort, but nothing comes for free, your best bet on testing what is in a medication it is the organization dance safe. Go to their website and follow their directions. I know I am repeating what others have said, but as long as you give it time; Dance safe will give you the answer.
ps please excuse any typos as it’s late and I’m tired thank you
(05-20-2019, 05:05 PM)Charon Wrote: You will find threads on here regarding testing kits for this issue.
Lets not put the full name of med in open forum. Use abbreviations please. Search engines will post what u just said.
Everything we say is read. We must not bring attention to our wee family forum.
But Yes you will find many news reports on this matter. Repeat clients are not needed we read. They are making a fortune. At the same time regular doctors told their patients I am cutting you off your meds. So, it is tragedy that has been happening and is continuing.
We have a thread on test kits for people whom do order meds.
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This new Fntylnl craze is horrible, it's what happens when the previous system that worked was shut down by the powers that be. Of course lower grade materials are going to swoop in to take the space of the actual quality med before it. This is what is happening now. The huge stroke of shutting so many things down with various operations has caused these backyard street hustlers to come in and create a dangerous environment. Really, the gov is the reason this industry is in the state it's in. Just like prohibition, quality and proof were horrible for liver and kidneys. Now, in this day and age, medication is a money maker and the bottom of the barrel who care nothing of your lives have stepped in and caused this horrible epidemic. I really think there would have been problems either way, but this is why so many are in actual dangerous situations now. Take away more and more reputable establishments, you get dangerous thugs in return. It's a shame.
" The Intuitive Mind Is a Sacred Gift and the Rational Mind Is a Faithful Servant " AE
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08-21-2019, 10:23 PM
(This post was last modified: 08-21-2019, 10:42 PM by Charon.)
They're putting fent in EVERYTHING. Uppers, downers, fake prescription drugs, recreational drugs, you name it.
They've even found carfent in fake oxy pills. Anyone making that stuff is pure evil.
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Let us not name things with such specificity. it will be the headline on google.
We speak in a cryptic fashion to avoid search engines. Both the good guys and the bad people do google searches.
And, even if one deletes the letter they were writing, i read google still keeps a copy. so does facebook.
But, see how we speak. Lets keep such HOT WORDS off the forum. okie dokie?
 It is Well with My Soul
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oh: 5/20 i just addressed the words to use:
Charon Wrote:
You will find threads on here regarding testing kits for this issue.
Lets not put the full name of med in open forum. Use abbreviations please. Search engines will post what u just said.
Everything we say is read. We must not bring attention to our wee family forum.
But Yes you will find many news reports on this matter. Repeat clients are not needed we read. They are making a fortune. At the same time regular doctors told their patients I am cutting you off your meds. So, it is tragedy that has been happening and is continuing.
We have a thread on test kits for people whom do order meds.
 It is Well with My Soul
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