Rexie

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!

For interstitial cystitis I watch my diet and like Prelief (calcium glycerophosphate) before coffee, other drinks (especially acidic ones), and certain foods. I recently added CystoProtek, a multi-agent dietary supplement formulated to help heal the bladder wall. Even one gel capsule per day has worked wonders coupled with the other things I take to calm the parasympathetic nervous system. I hope the moderators will leave these standard brand name products in this post since they are widely used by interstitial cystitis patients and recommended by their urologists. I just added a low dose of stimulant to my personal herbal response and treatment of CRPS – phenylephrine (found in some decongestants). Low plasma norepinephrine and metanephrine concentrations are often found in patients with chronic pain. I feel surprisingly and joyfully almost normal. It is awesome! I’m 68 and have had a time of it in life (Lyme disease for 161/2 years; herpes simplex I encephalitis in 2012; and autonomic issues since 2016; and now a diagnosis of CRPS). The stimulant helps keep blood pressure up and reduces fatigue. I do have a B.S. in chemistry and a genius level IQ, so research is fairly easy for me – hence the self-treatment which has been a life saver. I also pray a lot and get lead to some great solutions to issues. A friend of mine (aged 76) with EDS now has a physiatrist who has undertaken to help her with chronic pain post pelvic bone fractures and is pleased with this alternative to pain management clinics. Perhaps one might help you. I have an appt. in Jan. with both a new PCP who actually knows something about CRPS and is herb friendly, as well as my UTSW-Dallas autonomic nervous system specialist, so I will have continued medical support. Perhaps you should concentrate on your cancer, blood pressure, and pain issues from interstitial cystitis and see how the rest of yourself might come into harmony. It’s all interconnected. Divine Love has always met every human need. ‘Tis the season. Love is universal in its adaptations and bestowals, so I know you will find just what you need. Dust off and keep seeking…

Seek long enough and you can have some truly Kafkaesque experiences... Be of good courage!

Pistol, for me, acute pain, as in kidney stones, a torn muscle, the beginning of an interstitial cystitis flair, jacks blood pressure up briefly (record high being 137 systolic; heart rate 105-110 max). However, continuing pain from these sources or CRPS makes my blood pressure fall and stay there without a little help. In general, I do best calming the parasympathetic system. Everyone is different. I should have made my statement you quoted less general and more specific to me. The literature is resplendent in examples for both types of responses to pain. I've always had, since childhood, an often paradoxical reaction to certain drugs and conditions. A nurse use to pass out valium in the dorm at music school at solo concert time - zippity-doo-dah for me (not calming).

An older, wiser Texas native once told me a long time ago: “You better sit low in the saddle, you’re in for a long, slow ride”. You might have hit a definitional snag in your quest for better health. The sciences and medicine are getting very specific now as to how they classify different but similar diseases and disorders, and how they train and deploy their professionals. Those making these decisions also impact patient care – our care – through their policies, stated and assumed. For example (not saying you do), you could be experiencing all the symptoms of dysautonomia but have chronic regional pain syndrome (CRPS diffuse, type 2 – confirmed nerve damage). Couple this to the fact that diagnostic criteria for CRPS is purely clinical (there are no specific diagnostic tests for CRPS which can reliably confirm or exclude the diagnosis) and there is a problem – what to do with you. And furthermore, does a practitioner even want to label you with such a weird and challenging diagnosis? CRPS is associated with autonomic, trophic, and motor function changes. In some neurology departments, a dysautonomia specialist may not wish to include you as a patient (for your own good – CRPS is not their “thing” and you might be bettered served elsewhere). Technically, an autonomic specialist might be the umbrella under which you could shelter. Some might take you on, some may not be up to the task (but they’d never give that as a reason – it’s just human nature). Some neurology depts. might actually have CRPS specialists, and in that case it is all good, except for the fact there no universal great treatments for CRPS. The point is – there are a number of causes for autonomic problems and not all are included in the work that dysautonomia specialists undertake within an increasingly narrowed classification in some circles. And, as others have mentioned, neurologists in general are increasing overwhelmed by COVID patients in crisis. But in the end, here we all are, a diverse group of humans with special needs and issues. Some have a specific diagnosis, some don’t and may never. Whatever the case, the goal is to stay alive, with or without help from professionals. Also, to be a little bit happy along the way. Like you, I have frequent trouble with low blood pressure. And it is scary and dangerous sometimes – here one minute, gone the next. Ideally you should have some help keeping the blood pressure up or that helps you function at lower blood pressure levels (4,600 mg pressed powder ashwagandha 2-4 times per day does this for me – at 70/43 I’m still doing chores but feel wonky. It also helps the over-excited parasympathetic nervous system eliminating the seizure-like sensation of frizzled nerves). For a low blood pressure fix you might turn to a trusted PCP, your cardiologist, or an endocrinologist. Hydrocortisone (or prednisone) is a quick and effective fix for low blood pressure crashes. Or you might treat yourself with herbs, OTC meds, or find a good, well-trained, alternative health care professional/practitioner. Back at home though, although you may have learned something interesting or been given something that actually works while you were out questing after and chatting up various professionals, so much of how you feel and perform is up to you. Sure I have to be careful and take more care as things change throughout the day, often minute-by-minute, but it’s worth it to me. Everything we do, everything we eat or drink, everything we take, prescribed or not, the many things we apply to skin or inhale, is going to affect each of us differently. You need to find those things that work for you, including developing some sort of coping method (a spiritual program, a psychological approach, etc. – some sort of sustaining belief system). Pain causes the parasympathetic nervous system to become overexcited which can lead to dangerous drops in blood pressure. Where possible and practical I like to limit the sensation of pain. I also have interstitial cystitis and manage that through diet and supplements. If foods, drinks, prescription and non-prescription drugs, herbs, topicals, inhalants, people, doctors, and activities don’t work for you, you need to eliminate them and move on. Kind of like getting a new saddle for your horse or a new horse entirely. Wishing you more peace and joy!

Thanks for the visuals! I grew up in Virginia and spent half my life there. Miss the Blue Ridge Mountains. Glad you had a wonderful experience! If you did it once you can do it again and each time will help retrain the brain so that post event crashes become less and less. Since starting a small dose of bacopa almost three months ago for CRPS and associated dysautonomia I have had a wonderful time with increased activity and joy and fewer periods of down time afterwards. Each success helps make this good more and more real. So keep being brave when you can and hold tight to the good. 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

Hi Knellie! You might like to try using lavender essential oil (Lavandula spp.) either inhaled or as a topical. I've used it for years as a topical for muscles spasms and aches as well as for migraines in the early stage when applied to temples and neck. Unfortunately for me now it works too well and crashes my already low blood pressure so I have to give it up. But for you folks with high blood pressure it might be a nice tools for relaxing; it reduced both systolic and diastolic pressures. Lavender Oil Reduces Depressive Mood in Healthy Individuals and Enhances the Activity of Single Oxytocin Neurons of the Hypothalamus Isolated from Mice: A Preliminary Study, Keizaburo Ogata, Koji Ataka, Hajime Suzuki, Takakazu Yagi, Ayumi Okawa, Takamasa Fukumoto, Boyang Zhang, Masanori Nakata, Toshihiko Yada, and Akihiro Asakawa, Evidence-Based Complementary and Alternative Medicine, Vol. 2020, Article ID 5418586, 9 pages, 2020: https://www.hindawi.com/journals/ecam/2020/5418586/ Lavender and the nervous system. Evidence-based complementary and alternative medicine, Koulivand, P. H., Khaleghi Ghadiri, M., & Gorji, A. 2013: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3612440/

After encephalitis in 2012 I had all of these horrible problems. In 2016 when CRPS got bad I started ashwagandha (Withania somnifera) which helps greatly and works in as soon as 10 minutes. If things are real bad after a busy, active day (overdone) or mental stress I'll add a capsule of Passion flower (Passiflora incamata). A few months ago I started Bacopa (Bacopa monnieri) herb and with the ashwagandha that put an end to these pesky unpleasant muscle fasciculations, tremors, spasms, jerking, writhings, etc. I don't take prescription drugs other than an occasional hydrocortisone as a fix to low blood pressure so I'm not sure how these herbs might react with some of the stuff some of you take. All three herbs have great safety ratings. They help increase GABA and balance the nervous system components. Cannabis-derived products (CBD, hemp drink, other) are also nice additions. Alternatively, 25 mg of tramadol (Ultram) once per day provides smooth sailing for me but in America requires too much government oversight for my taste. With self-pacing I have a pretty good although often seemingly limited life but many of the "why me?" feelings have subsided and pain is manageable. I'm actually consistently happy for the first time in years. Everyone is different so be proactive and find things that work for you as an individual. Back when I had Lyme disease (1989-2006) I tried lots of prescriptions commonly mentioned on this forum and none really worked well and many had unpleasant and dangerous side effects.

I do best eating foods low in histamines. Here's a good list of "good" and "bad" foods: https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf On high pollen days here just a half Benadryl tab (12.5 mg diphynhydramine) is helpful without being drying or causing undue drowsiness.

Hi Roamer1! I began my journey at UTSW Dallas neurology last Feb. Thus far, allowing for cancellations due to COVID, I've seen Dr. Steven Vernino, Dr. Kyle Blackburn, Dr. Elizabeth Golden for autonomic nervous system testing, and have Dr. Lauren Phillips on my case now running some more labs to see why my nervous system is "moderately dysfunctional". All these UTSW Dallas doctors seem quite competent and compassionate and my experiences have all been positive. I've been taking ashwagandha (Withania somnifera) for pain and stiffness, hydrocortisone as a rescue for low blood pressure (I'm so glad it's cooler here now in the DFW area since hot weather made blood pressure plummet). For extreme pain moments I'll add passion flower (Passiflora incamata), cannabinoids, and Benadryl as a sleep aid. This week I have been trying a low dose of Bacopa (Bacopa monnieri, also called Brahmi, of the family Scrophulariaceae), a safe plant used in Ayurveda for neurological rejuvenation which I am really liking for better movement and increased pain management. Lemon verbena (verveine) tea is quite relaxing: https://www.harney.com/products/verveine?variant=1517655490566 It was nice to find DINET - some journeys are more fun than others and this one is just plain strange and has been for me for a long time. All the best to you and other members!