Potsie1990

My childhood episodes consisted of of shaking, nausea, urgent bowel movements (during episode) feeling faint, trouble breathing, blacking our and dizziness upon standing, passed out completely once (lol they were like, she just dropped and fell asleep... she must be tired! They never took me to a doctor. Thank god I didn’t actually die) vasovagal response, cold clammy hands, a need to lie down. They just said I was a nervous kid. Lol I kept telling EVERYONE something wasn’t right. Finally when I was in my teens, it got so bad I once mentioned I wanted to die. Not like I was going to kill myself, but because I was ridiculed my whole life and I was constantly pushing myself to be normal and I couldn’t do it anymore. As a result of that delightful comment I made that one time, my parents admitted me to a inpatient psychiatric facility where I spent 2 weeks being forcibly doped up and observed. So imagine having undiagnosed dysautonomia and being forced to take a cocktail of drugs that made it 10x worse. Also, they said My dysautonomic episodes were a result of bipolar disorder, panic disorder, schizophrenia, adhd and anxiety. Lol mind you, I was an only child of a mother and father who were at the time... a little incompetent... but that’s another story. I am still convinced they just wanted to get rid of me. when I was 17 I moved out and haven’t taken a psychiatric drug since. Then I eventually assumed everyone lives this way and I must be a weakling, or as my family put it, loved to complain for attention. Didn’t pursue treatment for 10 years until I landed in the hospital for extreme chest pain, and later that year I was finally diagnosed. long story short, I am a normal 27 year old married woman who lives a wonderful life and who had a successful career (I am a domestic goddess now aka stay at home housewife) and currently does not have any mental disorders. Not to say they are in any way wrong, but for me, was just misdiagnosed and mistreated.

When I feel like there is food just sitting in my stomach and it’s making me nauseous, I take a peppermint oil beadlet from Doterra. It’s very refreshing and actually soothes the digestive tract in a very cooling way. The big guns for me are zofran. I try not to take it often because it’s the only thing I can take for nausea and I don’t ever want it to stop working. Depending on how your stomach reacts to fiber, I started making whole fruit juices (like blending half a watermelon with some water and stevia or making blender pineapple ginger and orange OJ, whatever combo you like), and adopting a low fat high raw vegan diet. It doesn’t have to be fully vegan. Some people eat nutritarian, where it’s mostly vegan with the occasional meat or their last meal of the day is whatever they prefer. For myself, I was high fruit and vegetables and my stomach and body was LOVING it! I was able to get my body the nutrients it needed (I would PACK my blender with greens and fruits for smoothies) and my stomach was able to actually digest it quickly and I could move on to my next meal. For the first time in years I woke up hungry and not with a feeling of food still in my stomach. It was great. You’ll have to add your sodium as needed but regardless of diet, getting your body the nutrients in the most efficient way would be beneficial. It’s so hard when your nauseous but I’d recommend maybe trying cold and refreshing things... you will naturally get enough fiber from real sources your body can process and it will help over time. Just go slowly and don’t over do it. Also, fresh apple juice can help with constipation. There is a brand of probiotics I use, and it’s the only one I can use in conjunction with zofran to combat the constipation. It’s called probiotic pearls digestive health (formally Pearls IC) and it works like a charm. There is also a tea called “get regular” tea by Yogi. It contains senna. It’s very gentle and effective. Check with your meds to make sure you can take it. For me, it works. My last resort is a saline enema, but that’s for when I am desperate! Lol If I can help in any way please message me.

Thanks for the reply. Yes, now that you mention it, I forgot famotodine gives me heart Palps too. Yay. Lol You know, personally, I am aware that some diets work differently for people. And I’ve always understood that diet is very personal and is absolutely not a one size fits all. With my mild gastroparesis meat specifically gives me a rotten feeling in my stomach and takes forever to digest so it’s an easy thing for me to give up. Veggies and fruits with low fat anything digests much faster and will actually clear out of my stomach to where I can feel hungry again after eating. I felt my best when I went high raw vegan for a few months and actually nearly fully recovered until my thyroid meds were adjusted and triggered another major episode (sent me into hyperT) I still have not come out of. I went back to eating normal vegetarian and vegan cooked foods and introduced processed high sodium things and don’t feel good at all. But, for others veggies and added fiber may not be good, so it’s about finding what works for you. Let me know how you’re double crutches work for you. I actually just ordered two canes, one foldable to keep in my car and another for walking at home. It is what it is. If it will help us, screw what anyone else thinks. And yes, I’ve learned how horrible people can be. I actually distanced myself from a lot of “friends” and family because I found out who they really were when I needed them the most. Oh well. Maybe I’ll get the courage to try the midodrine. Do you take it when you have things to do? Or do you just take it and sit up while laying down? Thanks and and I hope you feel better. Sounds like a rough day

Hello everyone! I would like to get some insight and see if there is anyone else out there like myself. My POTS/dys is being exasperated by the current heatwave here in Los Angeles. I’ve had pots and dys symptoms my whole life and was finally recently diagnosed last April after an extemely bad recurrence. But unfortunately, the doctors can just tell me I have it, but can’t tell why or what type or give me any real insight on what I can do. anyway: my entire life, I have not been able to take certain drugs. Please excuse my formatting and typing. I am so weak but I’m trying my hardest to type. Please bare with me. I am new to this. I knew i had something my whole life but I am just learning the tips and tricks for Dys/pots life Reglan, Phenergran, Benadryl, Tylenol PM, NyQuil, Alka seltzer cold meds, basically anything that has a sedative, decongestant etc causes extreme shaking and vasovagal response. Anxiety, nausea, vomiting, diarrhea, shortness of breath, tachy. Etc. even some anti anxiety meds will cause restlessness instead of calming me. It’s so beyond exhausting. Coffee used to stimulate me, and now it just turns me into a sedated zombie. I can’t sleep, it will make my mind restless but my body will be sedated. Like I will just lay there with my eyes open and unable to really do anything. The only thing I can take during an episode is 4mg of Mylan Odansetron (the only manufacturer I can tolerate) and .5mg Ativan. It’s the only anti anxiety med I can tolerate as well but gives me horrible pots the next day. But this is only during a shaking/nauseous episode, not low BP weakness episode. I am so weak, dizzy and feeling so bad, my BP is 87/58 when laying down (I’m symptomatic below 95) and when I’m up I’m lucky these days to hit 95-100 sys. Even the last few nights, I get a horrible sensation in my body where it’s restless and I have to keep moving. It’s so annoying because I’m so tired and I want to sleep but my body just feels squirmy. My doctor who wasn’t the most knowledgeable on POTS and my reactions to meds (he just wrote me off like I didn’t know my body) gave me midodrine. Basically he threw it at me and told me that’s all he can do. now luckily for me I already hit my deductible, but I’m like 90% sure the midodrine is going to give me the same horrible response since it’s a vasoconstrictor. It’s not so much I don’t want to end up in the hopistal, because my lovely basic pots educated ER doctor who suspected POTS in the first place would most likely be there or on call... but I just don’t want to go through another episode right now. I’m exhausted beyond belief. My family was just here staying with us and my dad forced me to watch a Netflix documentary called the magic pill where they basically say a ketogenic diet will cure you of your disease and cancer. While watching this, he was drunk and had the nerve to tell me that I did this to myself by recently adopting a “‘more” vegetarian/vegan lifestyle. (My blood tests show no deficiencies other than the common Vit D btw and I’ve been sick my whole life, even while eating “normal”). He is not mentally stable and has ptsd from Iraq and Afghanistan war so I know to take it with a grain of salt, but he said while yelling at me “THEN HOW COME ITS JUST YOU! Your mom is fine, I’m fine, we are all fine. It’s just YOU!” & The funny part is, low blood pressure runs in his family and he never told me until a few months ago after I told him what the doctor found. So actually, it could be genetic. Lol but I spent days crying because it hit me right in the part of my soul that is still healing from my childhood. That’s a whole other can of worms, but let me just tell you I am physically and mentally exhausted. Sorry about the rant! Lol i tried calling around to see if anyone would give me an IV at an urgent care and they said no because of my condition. Lol GREAT. Im drinking fluids, increasing salt, wearing compression stockings. Any advice would be appreciated, or if you can share your experience I’d love to know what you do. I’m so exhausted. I was supposed to go to dinner tonight but now I can’t. I’m so upset. Im literally about to order a cane and a scooter on amazon right now. I don’t care. Lol I’m so done. I’m exhausted.

Hugs

You know, I get the same effect, except everything that has a sedative gives me a paradoxical effect and it’s a tachy panic filled nightmare. Anyway, just wanted to add...There is one brand of odansetron (zofran) by the manufacturer Mylan. Does not make you sleepy and is ODT. Maybe ask your doctor if you can try it. I also take peppermint beadlets by Doterra from amazon. It’s a life saver along with having a little peppermint oil on a tissue and holding it under your nose. I get a gross feeling in my stomach when my food doesn’t want to digest so it helps give you a refreshing feeling. Hope that helps. It’s no fun!

Hi love, not sure I can add much advice but what I do is keep my essential oils in hand. When I’m having an episode and feel short of breath and nauseous, I put a little peppermint oil in my between my hands, rub them together and then cup my mouth and nose and take a deep breath. The chill and fragrance help “bring you down” and it’s an invigorating way to calm your breathing. It helps with nausea if you get that as well. Honestly, it sucks so bad but there’s really no choice but to ride it out. A cold wet cloth on the forehead and a fan will help cool and calm your body down. I even carry a bottle of facial mist and spritz it on my face during an episode. I have a ritual, and it’s all non invasive and helps it go by a little smoother. Maybe sip on some ice cold water too if you can. That will help with your body freaking out.