Sharing the medications that you see working over time and what conditions they can help with is extremely helpful to those that don’t have knowledgeable physicians working with them. Sadly most physicians are overwhelmed and just don’t have time or interest in this disease. My daughter, in her teens suffered heart issues which now we know was PoTS. Now the connective tissue issues along with numerous other associated complications play a daily role. Bless those fighting with this disease and the doctors taking the time to help.
That is precisely why I am sharing this information and why I host my podcast, Bendy Bodies. Unfortunately, I get messages like yours on a daily basis. People are suffering and doctors either don’t know how to help, don’t care to, or don’t have enough time. For the patient, it doesn’t really matter which of these is the case, as the end result is the same. They go on to believe that their symptoms are either their fault, all of their head, made up, etc.
I started this Substack newsletter for a few reasons. One, it allows for much longer responses and posts than traditional social media platforms. Two, as popular as the podcast is, not everyone learns well by listening or watching (it’s available on video on YouTube and Spotify). Some people learn better through reading. Lastly, Substack is turning out to be a fabulous way to connect with people like yourself. ❤️🩹
I have hEDS, MCAS, dysautonomia, Sjogrens and a long, long list of other issues. I also have an amazing group of Seattle based specialists.
I took ketotifen for a while but stopped it and several other meds (naltrexone, Gabapentin, prednisone) because of the drowsiness, uncontrolled weight gain, a bleeding ulcer and the counter effects on Sjogrens. I started taking high doses of curcumin (2500 mg/day) and quercetin (2000 mg/day) plus PEA and NAC (1800 mg/day). My cholesterol normalized, inflammation reduced, energy increased and brain fog receded. This is not medical advice. I’m not a doctor. It’s just a testimonial from a person lucky enough to find great doctors knowledgeable in these complex issues and some workable alternatives. I’ve had limited success with progesterone, testosterone and cromolyn sodium.
Thank you so much for sharing that fascinating information. I don’t know if you have ever listened to my podcast, Bendy Bodies, but on one of the episodes recently (Dr Theoharides) we discussed nutraceuticals like quercetin, curcumin, NAC, etc.
I have EDS and MCAS and I'm also a health coaching (USA based FMCA grad). Your content and podcast is something I readily refer EDSrs to. It's great to have a licensed provider supplying this info... especially on off label Rx use or compounded Rx Tx's.
Oral ketotifen has been my personal "friend" for quite a while. I've recently noticed in my area (Boston), pre-op anesthesia folks seemingly are more comfortable with it. It REALLY helps when a patient can refer to your blog post during medical encounters.
I was especially blown away on how spot on.... and confirming for me... you were in you podcast about preparing for an OV. With EDSrs, I also do patient navigation and educate on how to optimize medical encounters & get best use of a doctor's expertise. That podcast makes it easier for me to help them plan preparation. So thank you for the topics you cover and the depth.
As for the cromolyn (inhaled), both my daughter and I have long gotten relief pretty immediately when using it with albuterol. I know it is not supposed to work that fast. And admittedly it works better over time. I am wondering if this is another quirk in EDSrs with MCAS. It is difficult sometimes to convince general MDs to prescribe it for nebulizing. I used to get the hand held from CA.
Thank you for the kind words. I am so glad you find my podcast, Bendy Bodies, helpful. Preparing for office visits is so important, especially for people with complex, systemic (yet underappreciated) illnesses like hEDS, HSD, POTS, MCAS, ME/CFS etc.
I also appreciate you commenting on the ketotifen newsletter and would love to hear more if you are willing to share more details.
Lastly, be sure you are subscribed as I feel confident you will enjoy part 3 of my favorite medications to prescribe.🫶🦓🧬🎙
I have EDS and MCAS and taken 1mg of Ketotifen at night. I also take rupetidine, sodium chromoglicate, famotidine and cetirizine as a rescue medication. I am in the UK. One of the hardest issues here is to be diagnosed with MCAS - things should start improving now that the National health service recognises the condition.
I have EDS and MCAS and taken 1mg of Ketotifen at night. I also take rupetidine, sodium chromoglicate, famotidine and cetirizine as a rescue medication. I am in the UK. One of the hardest issues here is to be diagnosed with MCAS - things should start improving now that the National health service recognises the condition.
Yes, the diagnostic process for MCAS is a huge part of the problem. I have mentioned on my podcast, Bendy Bodies, but I think MCAS should be renamed as mast cell activation SPECTRUM! Or at the very least, we need to make sure that people who have symptoms consistent with mast cell activation disorders, but do not have an elevated tryptase get a diagnosis of mast cell activation, unspecified. We know and they know that there is something wrong with them so they need a diagnosis. They deserve one! It is important for validation, serves as an explanation for one’s suffering, and allows access to services.❤️🩹
Sharing the medications that you see working over time and what conditions they can help with is extremely helpful to those that don’t have knowledgeable physicians working with them. Sadly most physicians are overwhelmed and just don’t have time or interest in this disease. My daughter, in her teens suffered heart issues which now we know was PoTS. Now the connective tissue issues along with numerous other associated complications play a daily role. Bless those fighting with this disease and the doctors taking the time to help.
That is precisely why I am sharing this information and why I host my podcast, Bendy Bodies. Unfortunately, I get messages like yours on a daily basis. People are suffering and doctors either don’t know how to help, don’t care to, or don’t have enough time. For the patient, it doesn’t really matter which of these is the case, as the end result is the same. They go on to believe that their symptoms are either their fault, all of their head, made up, etc.
I started this Substack newsletter for a few reasons. One, it allows for much longer responses and posts than traditional social media platforms. Two, as popular as the podcast is, not everyone learns well by listening or watching (it’s available on video on YouTube and Spotify). Some people learn better through reading. Lastly, Substack is turning out to be a fabulous way to connect with people like yourself. ❤️🩹
I have hEDS, MCAS, dysautonomia, Sjogrens and a long, long list of other issues. I also have an amazing group of Seattle based specialists.
I took ketotifen for a while but stopped it and several other meds (naltrexone, Gabapentin, prednisone) because of the drowsiness, uncontrolled weight gain, a bleeding ulcer and the counter effects on Sjogrens. I started taking high doses of curcumin (2500 mg/day) and quercetin (2000 mg/day) plus PEA and NAC (1800 mg/day). My cholesterol normalized, inflammation reduced, energy increased and brain fog receded. This is not medical advice. I’m not a doctor. It’s just a testimonial from a person lucky enough to find great doctors knowledgeable in these complex issues and some workable alternatives. I’ve had limited success with progesterone, testosterone and cromolyn sodium.
Thank you so much for sharing that fascinating information. I don’t know if you have ever listened to my podcast, Bendy Bodies, but on one of the episodes recently (Dr Theoharides) we discussed nutraceuticals like quercetin, curcumin, NAC, etc.
https://www.bendybodiespodcast.com/hidden-histamine-threats-with-dr-theoharis-theoharides-ep-139/
I will listen. Thank you. My newest exploration is into the world of peptides. Too early to say how that will work out.
I have a spreadsheet of all my current and recent meds and supplements as well as my providers. I’m happy to share it if you’re interested.
I have EDS and MCAS and I'm also a health coaching (USA based FMCA grad). Your content and podcast is something I readily refer EDSrs to. It's great to have a licensed provider supplying this info... especially on off label Rx use or compounded Rx Tx's.
Oral ketotifen has been my personal "friend" for quite a while. I've recently noticed in my area (Boston), pre-op anesthesia folks seemingly are more comfortable with it. It REALLY helps when a patient can refer to your blog post during medical encounters.
I was especially blown away on how spot on.... and confirming for me... you were in you podcast about preparing for an OV. With EDSrs, I also do patient navigation and educate on how to optimize medical encounters & get best use of a doctor's expertise. That podcast makes it easier for me to help them plan preparation. So thank you for the topics you cover and the depth.
As for the cromolyn (inhaled), both my daughter and I have long gotten relief pretty immediately when using it with albuterol. I know it is not supposed to work that fast. And admittedly it works better over time. I am wondering if this is another quirk in EDSrs with MCAS. It is difficult sometimes to convince general MDs to prescribe it for nebulizing. I used to get the hand held from CA.
Thanks for all you are doing!!!
Thank you for the kind words. I am so glad you find my podcast, Bendy Bodies, helpful. Preparing for office visits is so important, especially for people with complex, systemic (yet underappreciated) illnesses like hEDS, HSD, POTS, MCAS, ME/CFS etc.
I also appreciate you commenting on the ketotifen newsletter and would love to hear more if you are willing to share more details.
Lastly, be sure you are subscribed as I feel confident you will enjoy part 3 of my favorite medications to prescribe.🫶🦓🧬🎙
I have EDS and MCAS and taken 1mg of Ketotifen at night. I also take rupetidine, sodium chromoglicate, famotidine and cetirizine as a rescue medication. I am in the UK. One of the hardest issues here is to be diagnosed with MCAS - things should start improving now that the National health service recognises the condition.
I hope you subscribed and we’ll watch for the next post. It is on cromolyn! ❤️🩹
I have EDS and MCAS and taken 1mg of Ketotifen at night. I also take rupetidine, sodium chromoglicate, famotidine and cetirizine as a rescue medication. I am in the UK. One of the hardest issues here is to be diagnosed with MCAS - things should start improving now that the National health service recognises the condition.
Yes, the diagnostic process for MCAS is a huge part of the problem. I have mentioned on my podcast, Bendy Bodies, but I think MCAS should be renamed as mast cell activation SPECTRUM! Or at the very least, we need to make sure that people who have symptoms consistent with mast cell activation disorders, but do not have an elevated tryptase get a diagnosis of mast cell activation, unspecified. We know and they know that there is something wrong with them so they need a diagnosis. They deserve one! It is important for validation, serves as an explanation for one’s suffering, and allows access to services.❤️🩹
Dr B how do we get these meds? I cannot find anyone to treat the MCAS although told by gastro I had it!? Help!