My daughter has Ehlers Danlos Syndrome and Mast Cell Activation Syndrome. She is concerned about her ability to use opiates after surgery as they often cause nausea and paradoxical reactions and/or she often needs larger quantities which then increase her constipation. Has anyone come across a medication for nerve and surgical pain that “sensitives” can use? Many thanks
I don’t have the answer you’re looking for re: pain meds @mogulmama, however, I am wondering if your daughter is able to take stool softener & laxative meds to help alleviate the constipation caused by Rx pain meds. I found CALM (Magnesium citrate powder) worked best for me as I could increase & decrease my dose as needed. It comes in several flavors & works quite well but needs to be started several days prior to surgery to help one establish a baseline dose that’s helpful & so it can be increased from there as needed. It can cause diarrhea if too much is used.
Thanks, Wendy! She has terrible problems with constipation even without pain meds, but I don’t know if she has tried Calm.
This Mast Cell thing is such a problem, too! And, to top it off, she metabolized drugs differently than most people. We’ll figure it out…
Best,
Jane
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Hi @mogulmama - I also metabolize meds differently and have EDS and MCAS. Opioids have zero effect on any pain for me just severe side effects. For surgeries I have only been able to use IV acetaminophen and IV magnesium while in the hospital for pain. Also low dose benzo sprinkled in for pain but I rarely used that as I didn’t want to risk a rebound when I left the hospital. IV acetaminophen hits differently than oral tylenol and laughed when IV acetaminophen was initially suggested but they were right and it helped me get through, same with the IV Mag. I now make sure I discuss with my surgeons and anesthesiologists to confirm that those meds will be immediately available to me while in the hospital since they are not commonly used. I also now ask what has helped their patients when opioids are ineffective in case I come across any new options. I hope your daughter’s surgery goes well.
Edit: Sorry I see your posted requested after surgery meds. After getting home from surgeries I only had the option of oral tylenol which wasn’t ideal. It’s a tough situation and I hope others who have experienced similar will have ideas.
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Brilliant. Thank you, ButterflyWishes!
Once you are home what do you use?
< sent in transit >
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@mogulmama I edited my reply above after I sent it since I reread your post and thought you might be asking about once people were home! Unfortunately, I only had the option of oral tylenol which wasn’t very helpful in the beginning days but it did eventually help to take the edge off and I used dissolvable tylenol around the clock so I didn’t have the long wait to break down a tablet. With these surgeries I also used lots of ice.
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Thanks so much! I hope your surgeries were successful. This is such a daunting event for anyone, but with EDS and MCAS it is terrifying.
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Have you had genetic tests? I have no Cyp2d6. Clinical pharmacologist told me fentanyl and morphine would work on me. Oxy does nothing.
I highly suggest people try asking questions to an AI program . I use Elon musk’s Grok . When I plugged in the info for this poster it gave answers as to what might work and why . After surgery is more complicated . I need a different major surgery and have been putting it off. I can’t use fentanyl for 90 days because it seems likely I would get addicted .
I haven’t run that question through for me yet although I did ask it how missing this enzyme might cause problems with toxins building in my head since my drainage is compromised. Gave me thorough answer
Grok did say that people with mcas may have heightened pain perception and those people may need multi modal approach . Gave a lot of info that you have to tailor to ones personal situation as you ask the questions
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Thanks, Jugular Eagle. Will look into AI and testing!
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Testing is hard to get but you have a reason to test. The way I did it was use a service like Nebula and get all genes tested. Then I uploaded to genetic genie . AI can help decipher results
If you are near a city you should look to see what they have available to help. Indianapolis In has a precision clinic that people can go to who have problems with meds
So I found the problem then got an official test
Don’t expect this to be easy. Most of the Doctors I have seen don’t have a clue. They will say I have heard about but that is all they know .
Grok can help analyze situation and then help write a letter to convince Dr you need testing. Insurance doesn’t like to pay for it but I think you have a good case to try.
grok can also analyze images. I haven’t done it with MRI yet but it was good with CTA and orbital CT.
To get a basic understanding look up the Flockhart table but do it on computer not phone when you first do it . Then find the meds you have a problem with to see possible issues and conflicts . Keep in mind these are not ones that are still emerging
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Cool! Thank you so much! You’ve figured out so much!
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I am the same way. After styloidectamy last October, i had to be hospitalized from the reactions to the meds. Took 15 medications to get it under control.
One of the things that may help her, if she can tolerate it, is phenergan suppositories. They work really well for nausea, but a lot of hospitals don’t use it. Won’t do much for constipation, but would help stop the nausea. I am on cromolyn sodium and ketotifen for MCAS, but it isn’t working, as nothing does.
Praying for her and you.
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@harrisonboy - Thank you for your input for @mogulmama. I’m sorry to hear you’re not getting any results from Cromolyn or Ketotifen yet. I’ve heard it can take quite a number of months of being on those before MCAS symptoms begin to reduce. How long have you been taking those medications? Was anything else suggested for future treatment if those don’t help? Are you working w/ a local doctor now or someone out of state?
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3 months, things are much worse. Hepworth actually prescribed them but not really seeing him any longer. As you know he wanted me to get stints, but odds were around 30% for success. My neurologist told me last week that it was a mistake to have the styloid surgery. He is telling me to get my kidney removed, possible spine surgery, MCAS and now EDS.
This is a hopeless situation with all of the issues. Still praying for tou and asking JESUS to touch all.
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I’m so sorry to hear this, Harrisonboy. We have often felt the same way on this journey of dominoes. There will always be a Next Thing for hope.
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Even though the outcome from your styloidectomy wasn’t what we hoped, you had to start somewhere in trying to find out how to relieve your terrible symptoms. I’m so, so sorry that the styloid removal made you worse.
I’m glad you have a neurologist who’s working with you, I’m sorry he felt it necessary to state the obvious about your styloidectomy rather than giving you encouragement that something else might help you more. Does he think you need a kidney removed because of Nutcracker Syndrome? If so, why not a stent instead as that could potentially save your kidney.
Doctors are beginning to see a link between MCAS & hEDS as more & more of our members w/ hEDS also are being diagnosed w/ MCAS. It would be great to find what the link between the two is.
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Hi @mogulmama - I too had problems with opiates, the first time I was given oral morphine, I had violent vomiting and hallucinations and was knocked out nearly all day. I cannot take the gabapeninoids or carbamazepine either. The secret I think, is to start very low with the mild to moderate opiates and increase the doses slowly. For me, I take dihydrocodeine and tramadol alternatively (tramadol is less strong). Add your paracetamol to both. Constipation is inevitable and must be managed on a regular basis. It’s no good just increasing fibre as opiates relax smooth muscle thereby slowing peristalsis. Over here, doctors like Movicol or equivalent or you may need a magnesium or senna - senna is a stimulant and could be unpredictable sometimes!
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Thank you so much!
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I would bet money you have genetic issues. P450 aren’t the only ones that can cause problems with Drugs
It would be worth investigating. Given your really bad reactions insurance might pay for the testing…or you could start with a whole genome test yourself to get the ball rolling . Grok has been really helpful in deciphering my variants and also what variants to look for
For example, Grok had me looking at UGT pathways. I advocate strongly for people figuring out their genetic issues to drugs for when and if your situation really hits the fan like cancer or an ER type of situation . Just watch a few episodes of the show ER or the new one called THe Pitt and it hits home just how chaotic it can get and why it is important to know those genetic issues.
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@harrisonboy I’m so sorry that the ES surgery hasn’t helped at all, but I second what @Isaiah_40_31 has said, that you had to start somewhere in trying to get your issues resolved, like peeling the layers of an onion as others say, & given the vascular compressions you had it did seem a logical place to start…praying that you find some further treatments to help you 
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