Posting on behalf of my aunt with her full consent. Looking for solutions, remedies, any ideas to make her feel better.
First spinal stroke at age 22, left with digestive issues that were constant but manageable.
Second major spinal stroke at 29, left with hyperactivity throughout body, trouble staying asleep with many sleep disruptions, & new digestion issues. Diagnosed with AVM inside spinal cord at 35 years old at C2 through C4 levels. Had laminectomy surgery to remove bone spurs and tissues in spine, which unfortunately caused her since-lasting hemiplegia. She is restricted to a wheelchair & has been in & out of PT. Over the past 15ish years since then, her paralysis has worsened - extremely little mobility of legs & left arm to navigate her wheel chair, right arm very weak, leans over in chair a lot. Over the past 2-4 years, things have really taken a nose-dive. Her digestive issues got so bad that her weight was too low for a while. Things got better, but she is back to where eating causes intense pain in stomach that feels like muscle cramping & like there is gas trapped but can’t pass the gas. She is in so much pain that she can’t fall asleep & lies in agony; when starting to fall asleep, her body alerts in panic & spasms/jerks awake & goes in cycles. Now, gets into deep sleep & dreams but then legs spasm & can’t move muscles, waking up in full paralysis. Finally can move pain is so intense. Then full anxious feeling (which has also increased exponentially since the surgery. She has a lot of hyperactivity in body & recent hyper audio sensitivity.
She is on a whole slew of medications for all of her ailments. I do not know all of the drugs and dosages, but we are seeking for any sort of remedy to help her with these digestion and sleep issues. There are a lot of problems she has that need solved, but the extreme pain caused by eating and the sleep issues have taken an extreme toll on her mental health since they worsened a few years ago. Is there anyone out there who has experienced these effects & found some sort of relief?
Thank you all so much for reading & potentially responding. I can dig for more information if needed, but appreciate this platform so so much.
@ray_ne hello and welcome to group . Wonderful that you are trying to help your aunt.
There is a wonderful dr in NYC Dr Anne Maitland she specializes in mast cell issues, which are histamines, we have 4 types in our bodies.
What can happen is your histamines go haywire and go out of control, they don’t know when to turn off. It can impact our lungs, tummy, and skin.
Dr Maitland suggests Doxepin which is an antidepressant that doesn’t work that well for depression but seems to help mast cell issues injunction with allergy meds.
My sister is on this cocktail she has mast cell issues her are skin related.
Another medication that can help for ibs pain and sleep is Low Dose Naltrexone, or LDN 4,5 mg. You have to get it from a compounding pharmacy I get it from Belmar pharmacy in Colorado and have it shipped.
I always suggest starting one drug at time for two weeks before starting anything else to know if it works or if you have a reaction.
Welcome, and thanks so much for joining us, its great you’re helping your Aunt. I hope we can provide some suggestions that may help her, she has had a tough go of it for sure. I’m a brain AVM guy so can’t speak to her condition from an experience based perspective. I do have to revert to my go to “advice” ad apologize for not being innovative. My suggestion would be, if possible, to seek out further medical opinion from other experts. I know a number of places will provide opinions based on being forwarded the patients file with all the scans etc., there might be an “ah ha” moment out there. I know for brain matters, Barrows and UCLA are two top suggestions, not sure about spine etc.
In Canada we have pain clinics that help manage pain in a variety of ways, natural included with the usual pharmaceutical means. I hate to hear of someone being in pain, and would seek opinion in that area as well.
You may have tried these options, the result may be the same but one never knows. Take Care, John
Thanks so much for the suggestions!! I’m not sure about all the medications she has tried and is currently on, but I will pass those ones along to see if her doctors have considered those.
Thanks for your advice! I know it’s difficult for her to go to doctor’s appointments, but it’s good to know that some are willing to look at patients’ files & offer their professional opinion. I will pass all of this along to her.