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Everything posted by Dystasysta

  1. I’m so sorry your going thru all this it brings back memories for me . I was declared disabled in2010 ish but was rejected first time no one even knew what an autonomic system was ( nor myself much and I was working on medical at that time in coding abd patient advocacy a late in life change of career plan. What is that old saying I think it’s from the old testament Man plans and God smiles. I’m not sure where you live as far as country or state but I hear more and more people are learning about how debilitating autonomic dysfunction can be and the underlying conditionThe Cannes company yet can your doctors write it up differently sometimes a rose by any other name gets approved.
  2. Hello I was reading some of the past posts on MCAS and I noticed some thing a pain specialist who helped me get approved for the cannabis program in my state mentioned me to consider this LDN. I have pain throughout my body I don’t even know which thing it’s related to first it was fibromyalgia then it was myofascial pain syndrome then it was complex regional pain then they said it was connected to the dysautonomia in the Mast Cell at this point I just know it’s pain and sometimes it’s like neuropathy in other times different form I have been on the cannabis program for a couple years now the difficulty is my body does not tolerate cannabis unless the ratio is very low like 20 CBD to one THC which is very hard to find at the dispensary so I’m pretty much stuck with topical. Can anyone tell me their experiences with this LDN I was very leery because I thought the ldn drug was for people recovering from addiction so I was confused and leery . being hyper Pots have to contend with my blood pressure going very highOr the ability to drop it low and the same goes for my stomach anything can constipate me seriously and most over-the-counter remedies will give me the runs. I feel like I am a swinging clock hand. Thank you and God bless.
  3. I can’t seem to eat dairy anymore so I have found yogurt alternative with coconut milk or almond milk there’s one brand called so delicious it seems not to affect me to negatively. My protein is from chicken I probably clucking don’t even know it anymore i’m not sure if my Mast Cell I was confused issues regarding what I can eat but I know my IBS has. I get confused at this point about increasing fiber eating bread but not eating weed I have found sourdough seems to be OK. As I got older he suggestions from the doctors seems to be less I know that sounds somewhat jaded but I do think that in some aspects “the thrill is gone“ trying to come up with treatment plans add a certain age unless you really Are lucky to hook up with doctors who are very interested in your specific case.I take Gastro Crom for the MCAD and the beta blocker and Norvasc for the Cardiac blood pressure situation they want me to take small Jose is just of Ativan which I do but I’m not the most compliant as those drugs scare me and with a history of being what they call idiosyncratic reactions I’ve become more leery of drugs. I can’t tolerate any pain meds so you can find me walking around with lidocaine patches for the somewhat unexplained body pain that changes places I think it’s fibromyalgia and they call it neuropathy and I think it becomes a vicious cycle you can’t exercise and then that makes you more deconditioned which makes you worse as I have found a few years ago I was doingMuch better when I was more mobile.All in any chicken recipes and suggestions for breakfast are more than welcome I can tolerate egg whites just not the eggs
  4. First I just want to thank you so much for reading what I post let alone responding I’d say you have no idea but I’m sure you do that it means so much to me. Yes I am on very high amounts of beta blockers 80 mg of Korra rag with a calcium channel blocker I think Norvasc. The problem seems to be like you mentioned that I have combination things going so some of the medication can make other things worse. I really related to what she said about stopping what you’re doing and laying down getting away from stimulation even if it’s something as simple as a phone call our music that was soothing two minutes ago. I think by now 10+ years later I would except that I don’t have control in regard to when do you see the text happen but there’s part of me that still keeps on thinking what did I do wrong eat wrong touch wrong etc. etc. Right now I just want them to give me a date for the admit two get the scopes done. I think being in an environment I’m not familiar with as it’s a different hospital and the unknown of how this will be handled versus 12 years ago in my own home in my own bathroom and set up as comfortable as I could be is unnerving me. I am i embarrassed to be like this at this age. I live in the north east there is no lack of medical facilities and it’s still boggles my mind how little they seem to know about the autonomic system. Pistol I want to thank you again and please know you’re in my prayers you youngster with a 🙂
  5. When first finally diagnosed they said it was done form of Pots possibly progressive and thst hyoer word which explained to them why I had more dudes with very high bp but swings to low at anytime so walk fine line with meds etc. question while it’s Neuro yet my neurologist I see less than I do all my other specialist like my cardio my G.I. and my Mast Cell and that’s always confounded me. The explanation is though it’s my autonomic nervous system the only way to treat it is the symptoms as they affect each organ. Has anyone had issues that as the day goes on my legs become like spaghetti and I can’t walk properly and I need to put the compression hose on yet my blood pressure is not super low. It’s like I’m getting some type of electrical current rushes throughout my body same time usually my eyes get very blurry and I know it’s time for meTo set myself up in my bedroom for the rest of the day or night. No one has really explains so many things to me and this is going on 10 plus years now. When I do have these major autonomic type events it doesn’t seem like anything particular will trigger it more than something else I could just be standing in my kitchen and suddenly from my head down to my feet I get these weird sensations like my body wants to explode and my blood pressure is either going very high or dropping I get a rash all over my body usually just on one side though and my vision blurryAnd I need to use the ladies room right then and there or else not much control does this sound familiar to any of you.
  6. I would do anything to gain weight been thin all my life but without being able to exercise and being older thin isn’t the same as when young. So I’m an old lady now with a belly from the ibs and bloating and rest of me thin . I used to be able to tolerate ensure etc but last few years it was just too seeet . My duet is repetitive chicken bake potatoes and oatmeal rinse and repeat LOL
  7. Can you add propel powder the sugar free it gives you the benefit of electrolytes which is what we need . If you buy the Powder it’s much more economical and you can take packets with you if you are out
  8. Thanks yes I am fully vaccinated . The dr is thinking my IBS maybe micro colitis and I guess only way to know is to be in there . She is a neurogastroenterologist who I met after being diagnosed with on and off gastroperisus . I guess my bottom doesn’t get the messages right with my brain for muscles to work correct down there . I have had ibs forever but they stopped doing scopes on me when my autonomic became issue . As we all know not all roads lead to dysautonomia but they tend to assume sometimes . I got diagnosed with MCDA few years ago but the Gastrocrom has helped with some those symptoms of hives and burning sensations . Anyone on that .Hod bless you all for being here .
  9. Thank you for the dishes snd input I’m second guessing myself while I wait for insurance to approve and get a date . Am I putting self in more danger with covig still and my drs for years have told he avoid hospital less no choice like my severe autonomic attacks cause my immune system not very good etc I’m praying but can’t figure out what I’m being led to . My last scope was just endoscopy ( they didn’t want prep ordeal ) and I was ok but I was much healthier then . I was never such a chicken had colonoscopy few times before this autonomic h*** came to visit and set up housekeeping . I suffer from severe sensory overload past two years have to wear dark glasses can’t drive on highway sudden movement affects me bright lights etc . I have acclimated to my new norm and that’s what I drs thought has made me lil stable but now this . If I could convince somone to stay at my apt while I prep abd drink a lot propel I wTer and Gatorade and have it done by a regular gi as outpatient would I be safer . I can’t imagine wearing a face mask for three hour days straight durring prep . I became so isolated I don’t know what’s best anymore .I left my f account years ago too much stimulation and o thought o would get better that if I took a deep breath and put on my bug girl panties it would dissaoeae. It didn’t only I did to many lovely people who did know what was happening to me and eventually those that didn’t got tired of me not being who I was having to go day by day fir plans and not enjoying what we used to share . Sorry long pist think I’m getting nervous and concerns as I e been in my local hospital enough times and while didn’t like it was never really scared .
  10. Hello nice to meet you yes my motility G.I. is a Neuro gastroenterologist ? She wants to admit me to the hospital and monitor me for a day or two before and after the procedure they think that’s the safest way to do it to prevent me from getting too dehydrated I guess the concern is even though I am on a lot of medicine for my labile blood-pressure which during a tax usually goes very high when dehydrated I can go very low and I am highly allergic to an awful lot of medicines so they can have someone from Cardiac watching over the anesthesia? I wish it was 20 years ago before I got sick and you could just put the TV in your bathroom and be at home miserable but safe but they don’t think that’s a good idea so you have gone through being admitted and having the procedures done there? I’m just hoping it’s not bed pans after prep that would be horrible thought. You’re 54 you’re still just a Youngin with a 🙂
  11. I guess my Siri that I would grow out of this wasn’t true. I was diagnosed in my mid to late 50s was sent to Nashville and Ohio and when I came back home like many of you there was no one doctor for this but each one worked on their own part. For me that was a cardio and an EP and A few G.I. and motility specialist. Over the years other things were added MCAD abnormal gene defect in my connective tissue and so forth. I learned to advocate for myself and sometimes found myself telling the doctors what to doAnd that worked for a long time until the past few months when this ride decided to change up it’s ways. This illness can be very isolating and lonely at any age but especially as we get older I am finding out. So today I just wanted to say hello again there are many faces names I bet that I recall from when I used to be on Facebook and was active in many of the discussion groups which I I had to stop due to some thing called sensory overload when I was on the computer something about pixels same sensory overload which is taken over my life in regard to driving reading my book clubs anymore I’m going to many places are used to enjoy. I just wanted to reach out I have some questions for those Who have had colonoscopies as all my doctors have wanted to avoid it for many years and now pairs it is necessary to rule out and he thinks serious and to help explain some changes. It’s alwaysBeen IBS and Gastro paresis until the MCAT got involved and I hope that I’m doing led to making some right choices. But for now tonight I just wanted to say hello and to wall my prayer of Tikkun Olam .. heal Repair the inner and outer world ,
  12. Hello, there appears to be no support groups in Ct, I' myself live on Shoreline , new haven county area . My drs ie EP , Cardio and Gastro think its great idea and as they ate noticing increase in patients with some ANS issues they are I believe just seeing tip if iceberg. My dilemma is this I can't post signs in their office or at the hospital where been admitted dozens of times.. Why don't know but asked.. Told we don't do that and can't hand out my phone number so how do I get word out. I know I need this as much as those out in my area whom I think I could help if just with comraderie and info. . I even have local library that said be glad to give me a room monthly to utilize,right now its me and my shadow .. So that's two broken ANS lol.. Our humors one best meds but right up there is one another's sharing if everything from tips, to experiences,
  13. Hello, there appears to be no support groups in Ct, I' myself live on Shoreline , new haven county area . My drs ie EP , Cardio and Gastro think its great idea and as they ate noticing increase in patients with some ANS issues they are I believe just seeing tip if iceberg. My dilemma is this I can't post signs in their office or at the hospital where been admitted dozens of times.. Why don't know but asked.. Told we don't do that and can't hand out my phone number so how do I get word out. I know I need this as much as those out in my area whom I think I could help if just with comraderie and info. . I even have local library that said be glad to give me a room monthly to utilize,right now its me and my shadow .. So that's two broken ANS lol.. Our humors one best meds but right up there is one another.
  14. In myearly sixth decade, i face different issues in making new friends while dealing with this "condition'. I wasnt diagnosed propelyr;u until my late 50s and by then i was unable to return to work or socialize in the way i had and the many ways people find freinds , work peers, PTA all my kids very grown and dispersed thru out fe states. the gym, going out to large socical functions,that include foot cant eat, crowds and stimulation my ANS just cant handle well anymore .... At my age feiends have moved, passed some and others very involved with grand kids ect( wish but none yet lol) . Its hard enough for our familises to grasy this condition trying to meet new folks with your ahem best compressed stocking foot forward and carrying tem bollets of gatorade just very difficult seems. Bowling is out lolo .. I would so appreicate any hints ideas as how to beat or at least hold at bay this symptom or maybe better worded result of the POTs, Hyperadrenergic syndrome, NCS , Gastroparesis with bynch of other stuff thtorwn in for good measure. There seems to be n onone in the strate of Ct. least in New haven county , shoreline etc area i can connect with. Just to have a freindly voice once a week that really gets it or ocsional cup of tea or if really really doing well catch a local movie thats on its way out so auditorium is empty be a true blessingI have spoken to local library that even offered a room for monlthy meeting if i could start one, and my Ep and other drs think its so needed in the area but i cant post anythingin the ir hospiutal or offices, Not sure why maybe privacy rules. So im not looking that grandeur a dream and rightn ow reaching out to anyone local. Im older but im young at heart and am told have the sickeest no pun intended sense of humor id love to share with a local dysta systa or bredren. I love and appreicate the few that i have met a;beit they are states and sates away from ,e they have been my salvation.Anyone with suggestons. . Blessings to you and your familiesand all touched by this unpredictable thing!
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