Dr. in Texas denied my referral.

[CallieAndToby]

On 12/18/2020 at 5:57 PM, Rexie said:

For IC there is now prescription Elmiron my urologist was excited about. My insurance covered it and CVS had it but not knowing what it would do to me (how it works to heal the bladder wall) I got it but haven't tried it. My guy retired and I haven't been back to query the replacement. I have autoantibodies (ANA and to striated muscles) and am so drug sensitive new stuff is sometimes scary. The Prelief, diet, and CystoProtek seem enough for a pain-free bladder for me. Lots of new stuff coming down the pike for all kinds of things - sweet! 

Elmiron is under lawsuit for causing vision problems and blindness. It's one of the first things I tried when I was a kid and after years, did not help. The thing helping the most is a muscle relaxant, I'm quite confident that my bladder muscles are very very tight and that's why I can't empty; hence the rapaflo being the main thing to help me. 

[Rexie]

You wrote: "Elmiron is under lawsuit for causing vision problems and blindness. " 

Thanks! Good to know about the Elmiron – glad I skipped it. I have enough autonomic vision issues and really do like to see even if it is off-kilter sometimes.  
My herb program includes herbal muscle relaxants that help IC, too.

You do know that Rapaflo (silodosin), is a selective alpha-1 adrenergic receptor antagonist and may lower blood pressure and cause other side effects: https://www.rapaflo.com/ 
Keeping blood pressure up and reducing fatigue are two of my main worries now after solving pain issues, so for me, Rapoflo would not be right. 

[CallieAndToby]

I know it lowers blood pressure. But it is literally the ONLY thing that has helped my bladder and I've been in misery since six years of age. It relaxes specific bladder muscles and the urethra. It also takes away my ptsd nightmares. A lot of people use flomax. My hope is Northera will increase my my blood pressure enough that I can take rapaflo. Nothing else in 30 years has helped, nothing except generic muscle relaxant kind of helps. When injecting botox they just inject where in the bladder and it has not been successful. 

[CallieAndToby]

In 30 years I have tried everything. After getting more testing done in Jacksonville, I could not even urinate (b/c I was irritated from all the catheters) until they gave me a muscle relaxant. All I have for pain is a heating pad. I too have done medical research my entire life since this started at age 6. I took rapaflo for only 2 weeks but I could actually go to the bathroom and feel empty, it was miraculous, otherwise checking with ultrasound I was not fully emptying. They won't give me anything for pain........ it's odd b/c in high school they were throwing narcs at me left and right. 

[Guest KiminOrlando]

29 minutes ago, CallieAndToby22 said:

They won't give me anything for pain........ it's odd b/c in high school they were throwing narcs at me left and right. 

Florida won't give opiods for ANYTHING. I woke up from surgery with throbbing pain where they had just cut me and they gave me 2 regular tylenol in the recovery room. I'm not kidding. I will NEVER do that again. I will need narcotics or at least long acting numbing if they are going to cut me again. Florida is the WORST.

[CallieAndToby]

5 hours ago, KiminOrlando said:

Florida won't give opiods for ANYTHING. I woke up from surgery with throbbing pain where they had just cut me and they gave me 2 regular tylenol in the recovery room. I'm not kidding. I will NEVER do that again. I will need narcotics or at least long acting numbing if they are going to cut me again. Florida is the WORST.

You don't have to tell me twice. And that is horrible!!!! Tylenol for surgery???????? I have Ic/painful bladder syndrome and it's considered the 3rd most painful disease on the planet and they won't do ANYTHING. Horrifying pain. How am I SUPPOSED TO SLEEP? I'm sorry you went through that. Welcome to the new America. Man in high school I had bladder pain, bone pain, all kinds of pain, they put me on Percocet, Vioxx, and cortisone shots. Now I took myself off of Percocet b/c it made me sleep through school but the Vioxx was great, until it got taken off the market for giving people heart attacks!!!!!! 

[Pistol]

@CallieAndToby22 - since all other measures have failed for the IC - have you ever considered the nerve stimulator that gets implanted in the bladder? I think they do that in cases that do not respond to medical treatment and are considered severe. 

[Rexie]

I’ve taken Himalaya Bacopa since 9-14-20 starting with ½ tab (500 mg whole plant powder and 250 mg whole plant extract per tab) with amazing pain relief results – covers both CRPS and IC. Just ½ tab the first day made an evening walk the most muscle-loose, pleasant walk I’ve had since encephalitis in 2012. I stopped for 5 days to try a script of tramadol courtesy of a new PCP but quit both the PCP and the tramadol and returned to Bacopa which is on par with tramadol without the narcotic undertone. I now have good pain coverage using ½ tab morning, afternoon, and before sleep at night. I have also routinely taken Himalaya Ashwagandha since 2016 for muscle stiffness and agitation and it is a great help in IC, too (3-4 tabs a day; each tab contains 380 mg root powder, 280 mg root extract, and 10 mg supercritical CO extract). All my endocrine and standard labs are excellent and better than before Ashwagandha. Both herbs have good safety records. Haven’t had a nasty IC flare since starting Bacopa and put in a new garden area and run my business happily with better focus and concentration. My only regret is that I need to keep taking the herbs. But all things considered, I am grateful for both herbs and the feeling of normalcy they allow me. 

My older EDS friend who fractured her pelvis had stopped communicating and I found out she was dealing with intractable, all-consuming pain. I recommended Bacopa to her and she has had remarkable success with pain management, too. I had missed her – glad she’s “back”. 

For herbs, source is important with regards to standardization, guarantee that the product is what it is suppose to be, and the product remains consistent and reliable over the years.  

For IC I do still use Prelief (calcium glycerophosphate) and CystoProtek. 

Documented actions of Bacopa: 
The Molecular Links of Re-Emerging Therapy: A Review of Evidence of Brahmi (Bacopa monniera), 
Deepali Mathur, Kritika Goyal, Veena Koul, and Akshay Anand, Front. Pharmacol.; 2016: 
https://www.frontiersin.org/articles/10.3389/fphar.2016.00044/full 

Pain management with Bacopa: 
Preclinical Profile of Bacopasides From Bacopa monnieri (BM) As An Emerging Class of Therapeutics for Management of Chronic Pains, Rauf, Khalid & Subhan, Fazal & AM, Al-Othman & I, Khan & Zarrelli, Armando & MR, Shah, Current Medicinal Chemistry, Vol. 20, 2012:  
https://www.researchgate.net/publication/233842854_Preclinical_Profile_of_Bacopasides_From_Bacopa_monnieri_BM_As_An_Emerging_Class_of_Therapeutics_for_Management_of_Chronic_Pains 

Minimal side effects: 
The chronic effects of an extract of Bacopa monniera (Brahmi) on cognitive function in healthy human Subjects, C. Stough  J. Lloyd, J. Clarke, L. Downey, C.W. Hutchison, T. Rodgers, P.J. Nathan, Psychopharmacology; 2001: 
https://www.gwern.net/docs/nootropics/2001-stough-2.pdf 

Constituents and actions: 
Neurocognitive Effect of Nootropic Drug Brahmi (Bacopa monnieri) in Alzheimer's Disease, Kaustubh S. Chaudhari, Nishant R. Tiwari, Rakesh R, Tiwari, and Rohan S. Sharma, Ann Neurosci., Vol. 24(2), pp.  111–122; 2017:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5448442/ 

Edited December 27, 2020 by Rexie
addition

[CallieAndToby]

On 12/27/2020 at 5:08 AM, Pistol said:

@CallieAndToby22 - since all other measures have failed for the IC - have you ever considered the nerve stimulator that gets implanted in the bladder? I think they do that in cases that do not respond to medical treatment and are considered severe. 

I have the interstim, it was placed about 5 years ago. 

 

On 12/27/2020 at 9:28 AM, Rexie said:

I’ve taken Himalaya Bacopa since 9-14-20 starting with ½ tab (500 mg whole plant powder and 250 mg whole plant extract per tab) with amazing pain relief results – covers both CRPS and IC. Just ½ tab the first day made an evening walk the most muscle-loose, pleasant walk I’ve had since encephalitis in 2012. I stopped for 5 days to try a script of tramadol courtesy of a new PCP but quit both the PCP and the tramadol and returned to Bacopa which is on par with tramadol without the narcotic undertone. I now have good pain coverage using ½ tab morning, afternoon, and before sleep at night. I have also routinely taken Himalaya Ashwagandha since 2016 for muscle stiffness and agitation and it is a great help in IC, too (3-4 tabs a day; each tab contains 380 mg root powder, 280 mg root extract, and 10 mg supercritical CO extract). All my endocrine and standard labs are excellent and better than before Ashwagandha. Both herbs have good safety records. Haven’t had a nasty IC flare since starting Bacopa and put in a new garden area and run my business happily with better focus and concentration. My only regret is that I need to keep taking the herbs. But all things considered, I am grateful for both herbs and the feeling of normalcy they allow me. 

My older EDS friend who fractured her pelvis had stopped communicating and I found out she was dealing with intractable, all-consuming pain. I recommended Bacopa to her and she has had remarkable success with pain management, too. I had missed her – glad she’s “back”. 

For herbs, source is important with regards to standardization, guarantee that the product is what it is suppose to be, and the product remains consistent and reliable over the years.  

For IC I do still use Prelief (calcium glycerophosphate) and CystoProtek. 

Documented actions of Bacopa: 
The Molecular Links of Re-Emerging Therapy: A Review of Evidence of Brahmi (Bacopa monniera), 
Deepali Mathur, Kritika Goyal, Veena Koul, and Akshay Anand, Front. Pharmacol.; 2016: 
https://www.frontiersin.org/articles/10.3389/fphar.2016.00044/full 

Pain management with Bacopa: 
Preclinical Profile of Bacopasides From Bacopa monnieri (BM) As An Emerging Class of Therapeutics for Management of Chronic Pains, Rauf, Khalid & Subhan, Fazal & AM, Al-Othman & I, Khan & Zarrelli, Armando & MR, Shah, Current Medicinal Chemistry, Vol. 20, 2012:  
https://www.researchgate.net/publication/233842854_Preclinical_Profile_of_Bacopasides_From_Bacopa_monnieri_BM_As_An_Emerging_Class_of_Therapeutics_for_Management_of_Chronic_Pains 

Minimal side effects: 
The chronic effects of an extract of Bacopa monniera (Brahmi) on cognitive function in healthy human Subjects, C. Stough  J. Lloyd, J. Clarke, L. Downey, C.W. Hutchison, T. Rodgers, P.J. Nathan, Psychopharmacology; 2001: 
https://www.gwern.net/docs/nootropics/2001-stough-2.pdf 

Constituents and actions: 
Neurocognitive Effect of Nootropic Drug Brahmi (Bacopa monnieri) in Alzheimer's Disease, Kaustubh S. Chaudhari, Nishant R. Tiwari, Rakesh R, Tiwari, and Rohan S. Sharma, Ann Neurosci., Vol. 24(2), pp.  111–122; 2017:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5448442/ 

Thank you! I'm very tired now but I see this is valuable information. 

[Rexie]

You are most welcome! You remind me of me when I was totally head-spun with pain and misery. 

Since adding bacopa to my herb program I have been able to enjoy life and come to terms with my special needs and certain limitations (an on-going process).  My cats and dog even respond to me in a more relaxed, un-worried way. I don't have a significant other and no family with expectations but I have actually explored a couple of new relationships (non-contact due to covid) and find that I can be more present to people and new situations. 

I do believe there is an answer for all of us. Onward into 2021! Hope it's better for all of us!