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Diamox and gastroparesis
I have gastroparesis of unlnown cause but I noticed everything started after my use of Diamox for intracranial hypertension,my neurologist finally said it may have caused this.I’m now in refractory stage,I tried Reglan but that’s a max of three months,Mirtazipine made me restless and agitated and sleepy,my Dr. offered Pyridostigmine but I can’t take that because of my asthma,I’m at the end of my rope,hard to eat and drink since always full and nauseous,I’m with UCLA Westwood,they’re suppose to be the best but slow progress,multiple hospital visits,I’m going to ask my Dr. for oral enteral diet like they use for tube feed and IV hydration,I would like to consult Dr’s for botox injections in the stomach and below,I have a problem with defecation too,uncoordinated pelvic muscles,I hope these doctors hear me out,if anybody is in a similar situation,pls.give feedback,I am a nurse and I’m about to lose my job of 25 years if I don’t go back in 7 weeks because I’m maxed out on my leave.
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Hey there @truthfinder, I also deal with Gastroparesis and I'm so sorry to hear this! I also have a friend who's 10x layers deeper than I am in this, and his battle with it has been horrendous. Mine, thankfully, is not to that extent. He's gone thru everything in the books and always gone thru Duke in NC. I've been thru a lot myself, but have just decided to "deal with it" until it gets any worse. My friend once had an internal stimulator, but I cannot vouch for that because I am not a candidate for one, as I already have one of a different sort. For him, it worked temporarily, but he wanted it taken out. Idk if that's something worth asking about on your end, maybe? I'm so sorry you're dealing with this, I wish you all the best in your journey to find answers and relief.
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1 ReactionHi @truthfinder, you’ve been working so hard to find relief, and I can only imagine how difficult it is to have the uncertainty about returning to work added to everything else.
Your mention of pelvic floor dysfunction caught my attention because of my own experience. I have several health conditions with overlapping symptoms, including digestive and pelvic floor problems. At one point, I was told that other treatments were unlikely to provide lasting improvement until I addressed the pelvic floor dysfunction. My care team described it as working from the bottom up.
It’s been a long journey, and I continue to make progress. Pelvic floor physical therapy has become a foundational part of managing my health, even though it hasn’t resolved all my other conditions.
I’ve also learned that not all pelvic floor physical therapy is the same. I’ve worked with different providers, and what has helped most is having someone who can identify my particular areas of dysfunction and guide me in addressing them.
I’m wondering what your experience has been with pelvic floor physical therapy, if you’ve had an opportunity to try it.
@rivermaya34
Thank you for your kind words,I am looking into maybe pyloric botox for the stomach or the pelvic floor if I am a candidate and my doctor agrees,it’s unfortunate that only Reglan is FDA approved drug for gastroparesis and has a safe limit of 12 weeks.
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3 Reactions@jlharsh
I’ve gone through pelvic therapy and external biofeedback for 4 months and 3 sessions of internal biofeedback,the breathing techniques are good tools however if you are on prokinetics to move your intestines and laxatives like me it’s like you don’t even have a chance to use your tools but you need these meds for things to move.Thank you,I’m sure therapy works for most.
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1 ReactionOh @truthfinder, thank you for sharing more about your experience. I can understand how challenging it must be when the medications you need make it difficult to use what you’ve learned in therapy.
I should clarify something about my own experience. The most helpful part for me has been the daily practice over several years, learning to recognize and coordinate specific muscles. As my care team has addressed different symptoms and problems, my pelvic floor exercises and techniques have changed, too. It’s been an ongoing process of learning, practicing, and adjusting, rather than just the therapy appointments themselves.
I also saw your comment about exploring Botox treatment and your earlier mention of discussing enteral nutrition with your doctor. You’ve been considering several different approaches to managing these challenges. What feels like your biggest obstacle right now, and what would be most helpful to hear from others here on Connect?
The biggest obstacle is being heard by your doctors and letting you choose your options.Health is wealth but we all have to make a living.It is empowering to hear from other gastroparesis patients even if its not me,this forum is a great help,thank you.
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2 Reactions@truthfinder I agree. They tried Reglan with me also, and it simply didn't work, so I stopped way before the 12 weeks was up. I never tried botox, so I'm interested to hear if that works for you! Crossing my fingers that you'll be accepted!! Keep being an advocate for yourself - you're doing the right thing - and don't give up!
I have tried so many meds for Gastroparesis with NO relief. Recently (2 weeks ago) I started on Caricol( a supplement found on Amazon). It is basically a papaya seed preparation made in Austria and it has helped my constipation/gas/pain about 75% after about5 days. I am still in disbelief but this supplement was actually reviewed on MediSearch, medical AI site. I highly recommend it and it has no negative side effects.