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I know I have posted about this before,but i’m having to make some tough choices now when it comes to treatment. None of the nausea meds are working. And i’ve tried EVERYTHING! Phenergan, Zofran, Sancuso patch, Benadryl,Domperidone, you name it. Nothing is working and the nausea is just horrible. I thought my illness couldn’t get worse. I was wrong! Now my only two options are have the gastric stimulator put in, or try botox. Well, obviously I am going to try the botox first before I jump to such drastic measures. I have heard horror stories from people with the stimulator, especially those who have idiopathic gastroparesis. So I guess i’m wondering how many others are dealing witht this, and have any of you done the botox? Has it helped? I just pray that Dr. Diana can “figure” all this out for us. ha! No pressure, right?? 😉
Firstly, just a thought but, after having a caesarian abdominal operation, my digestive system stopped for 5 days (OOuucchh!) They kept coming in each day and listening to my tummy – no joy. Then a midwife in her senior years said, you need an abdominal binder – which strangely enough, stopped the pain and worked, yey! My daughter being born the day of the caesarian will be 30 next year, so this happened long before I knew I had POTS but, I’m just wondering, as an abdominal binder is one of the treatments for POTS, whether this might help.
Secondly, I know that nausea can also be a sign of brainstem compression, have you tried wearing a rigid philadelphia neck collar ? It might reduce the nausea, if it’s being caused either by a chiari malformation, or by cranio-cervical instability, both of which are relatively more common amongst us, than in the general population.
Regards
Barbara
(UK)I have found relief from nausea that i have suffered with for many years from mast cell treatment. Benadryl is helping at last! Another one of the hundreds that i did try was called Resolor and it speeds up motility mostly in the lower bowel, but can help upper GI problems too. It did help slightly. I am also looking at options next month for a gastric pace maker, but i am trying Dr Driscolls meds before i commit to anything that drastic, although drastic measures are needed!
Hello, my friends, If there is ANY way you can put off any “drastic” measures, I think you’ll find it worth your while. I humbly believe I’ve figured this out, and am working with attorneys now to patent the inexpensive “fix”. If you lean toward diarrhea, definitely try Zyrtec, Zantac. Two days of double dose ZZ meds STOPPED my 8 WEEKS of horrible diarrhea.
Then I went right into gastroparesis/constipation. Gastroparesis was one of my very first signs of illness, actually. It is also VERY common in other “autoimmune” and “neurodegenerative” conditions, so I knew I had to research it. I am working just as quickly as I can to get this to you, OK? Getting rid of this horrible symptom is such a relief. After 9 years of gastroparesis, constipation with some horrible bouts of diarrhea, I never even think about it any more. It is actually kind of strange to have “normal” bathroom habits with no prescriptions needed. My kids, and heck, even my mom (also affected) also don’t have these issues any more. I pray it will be life-changing for you, too. (Betcha’ it will be). 😉 Big hug…Dr.dianna are you a god? XD because you are truely saving lives. This will be a huge relief to me since i was born, ive had constipation mostly my whole life. I cant wait for the big reveal. :3
Dr.dianna are you a god? XD because you are truely saving lives. This will be a huge relief to me since i was born, ive had constipation mostly my whole life. I cant wait for the big reveal. :3
Haha. That’s funny…. Certainly no God (CERTAINLY), but rather a crazed researcher!! Discussing this with an MD/PhD who is also a patient (and under strict confidentiality at the moment), we reminisced about how our moms gave us enemas when we were kids. Gads. (It’s not just you!) You’ll be happy to know that my kids also have no GI issues any more. I remember when everyday was a mystery — what would my bathroom habits be today? Usually, I was bloated, constipated — ugh. Sometimes the diarrhea was so bad, I wondered if I’d need to wear a diaper. Well, it is nice to have ONE symptom out of the way!! It took me just a bit of time to get the recipe just right. You’ll laugh when I get to tell you about some of the “corrections” needed! I hope that by donating my body, I was able to speed up what would have normally taken scientists YEARS to work out. I truly believe this will be worth the wait for you. 😉
Yep, that was me, I remember all of the suffering. I also remember the warm water soapy enema’s (Lux soap flakes, I believe) delivered through a funnel down a long rubber tube – it seemed like every couple of weeks – by the district nurse, who came around on her bike, all those years ago. I was told I had a ‘lazy bowel’. Strangely I was also told to keep away from oranges (ooeer lack of vitamin C – so I’d be lacking in one of the vital ingredients for making good collagen!)
The bowel problems only happened in childhood though. I had a dermoid ovarian cyst removed when I was around 10 or 11 and I don’t remember having much trouble after that (until all this trouble started in my late forties, after my fall). As a child, I’d had pain caused by the cyst for years, which got so bad I passed out, yet had said nothing because I thought it was normal to have abdominal pain.
I have looked through my medical notes and a consultant suggested ‘Hirchsprungs’ for the bowel trouble but I never had any surgery to correct this, if it was.
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!I am scheduled to have a botox injection next monday. I had to FIGHT for this and FIGHT against the gastric pacer. I just don’t know what to do . And it seems like my POTS symptoms have gotten worse lately. UGH I have 2 children under 6, and I have been dealing with this stuff for over 5 years now. Its just getting worse. I have tried the ZZ double dose for 2 weeks now and have not noticed a dramatic difference. Does that mean your treatment isn’t going to help me, Dr. Diana??? I don’t know what to do in the meantime to hold of the ocean with a broom. Where do I go next? I know you are working so hard to get us answers, but I just fear that I can’t hold off much longer living like this. I’m willing to try anything at this point. Where would I get a soft neck collar? I could give that a shot. I have had an adjustable bed for years. I can’t sleep flat anymore because when I do my heart rate is so bad! Sometimes, I even have to sleep in the recliner bc the bed’s angle just isn’t enough. I get over heated SO easily! I do notice when I lay flat on my back my symptoms are worse. I feel dizzy, feel like all the air is getting sucked out of me (if that makes sense) and just feel a weird pressure sensation. I was tested for a chiari (sp?)malformation a long time ago and it was negative. What meds do I need to be asking my primary doc to try??? What tests do
I need to have done to pinpoint this possible low lying pressure/mast cell? I feel like i’m missing pieces of the puzzle and i’m ALMOST THERE in terms of figuring this out.. this is ruining my life and my family’s life. And i’m sure, like everyone else on here, I just want my life back!! oh one last thing, I tried the “exercise” route for POTS and did that for a few months. I felt horrible!!!! They kept saying push through it and it will get better, but it never did. Now i can’t exercise at all. But the nausea/gastric problems are the main problems right now. Sorry for ranting, just need to know what to do next!! I guess the botox is a simple bandaid until I can get some answers. Definately NOT wanting the gastric pacer if I can avoid it!I have had to sleep sitting up at 90 degrees, for the last 10+ years, in a sloping bed, in order to help alleviate some of the symptoms. A rigid neck collar (Philadelphia) has been the best treatment I’ve had so far, showing immediate improvements of several symptoms, for my ‘version’ of the condition (acquired by a head and neck injury – which releases cytokines and starts the cascade). Send me a private message and we’ll discuss the neck collar further.
I’ve been taking the Zyrtec (Cetirizine) Zantac (Ranitidine) regularly, + Diamox (Acetazolamide) tentatively, for a few months now and personally didn’t see any dramatic improvements (other than relief from the GERD symptoms) but analysis, between the start of taking it and now, shows several improvements that have occurred over time in a more subtle fashion.
Regards
Barbara (UK)I am scheduled to have a botox injection next monday. I had to FIGHT for this and FIGHT against the gastric pacer. I just don’t know what to do . And it seems like my POTS symptoms have gotten worse lately. UGH I have 2 children under 6, and I have been dealing with this stuff for over 5 years now. Its just getting worse. I have tried the ZZ double dose for 2 weeks now and have not noticed a dramatic difference. Does that mean your treatment isn’t going to help me, Dr. Diana??? I don’t know what to do in the meantime to hold of the ocean with a broom. Where do I go next? I know you are working so hard to get us answers, but I just fear that I can’t hold off much longer living like this. I’m willing to try anything at this point. Where would I get a soft neck collar? I could give that a shot. I have had an adjustable bed for years. I can’t sleep flat anymore because when I do my heart rate is so bad! Sometimes, I even have to sleep in the recliner bc the bed’s angle just isn’t enough. I get over heated SO easily! I do notice when I lay flat on my back my symptoms are worse. I feel dizzy, feel like all the air is getting sucked out of me (if that makes sense) and just feel a weird pressure sensation. I was tested for a chiari (sp?)malformation a long time ago and it was negative. What meds do I need to be asking my primary doc to try??? What tests do
I need to have done to pinpoint this possible low lying pressure/mast cell? I feel like i’m missing pieces of the puzzle and i’m ALMOST THERE in terms of figuring this out.. this is ruining my life and my family’s life. And i’m sure, like everyone else on here, I just want my life back!! oh one last thing, I tried the “exercise” route for POTS and did that for a few months. I felt horrible!!!! They kept saying push through it and it will get better, but it never did. Now i can’t exercise at all. But the nausea/gastric problems are the main problems right now. Sorry for ranting, just need to know what to do next!! I guess the botox is a simple bandaid until I can get some answers. Definately NOT wanting the gastric pacer if I can avoid it!Oh, How I hate to hear this… 🙁 Usually the ZZ drugs help with diarrhea, but then the constipation/gastroparesis sets in. Was that your experience. Most of us have vascular abnormalities that can mean we don’t drain blood well from our heads when we lie flat. Just as you’ve found, elevation of your head is important. My son and I have fibrosed valves at the base of our internal jugular veins. That is irreversible, so we elevate. HUGE HELP. The soft cervical collars are on the “store” through Amazon (on prettyill) or you can buy one at most drug stores. They really help, especially if you have to elevate your head.If you respond to antihistamines, you likely won’t exercise well without degranulating — that’s a real problem for us. Nausea was constant for me until I relieved my high intracranial pressure with Diamox. Did you try that, perchance? The nausea went away immediately. If gastroparesis is the cause of your nausea, I think I’ve figured that out. I’m working as fast as I can to get that to you, OK? I know it’s a race against the clock for so many. Big hug…
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