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KiminOrlando

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Posts posted by KiminOrlando

  1. Anybody else getting reviewed absolutely every year on the dot? I feel like I barely get past one before the next one comes. It causes alot of stress which makes me flare. I have multiple, incurable, progressive diseases. Why is this hard to grasp? They denied me at every turn initially. I had to take my case to a judge to get approved. It has been 18 years. 18. What do they think has changed? 

    Is there a trick to make this stop?

  2. I may not be able to stay on these then. Two OTC Xyzal (H1) and 1 Hydroxyzine (H2) and I can barely walk. This can't continue. Even the increased Fludrocortisone didn't help. I guess I have to contact the Mast Cell doctor. I think the meds are working for Mast Cells though. I had color put on my hair with no reaction. I had a Kosher hotdog with no reaction (maybe Kosher fixed that). I had a plum and so far, I'm still ok. Tomorrow I try watermelon again. 🍉 

    I just can't walk across the house.

  3. For 'leaky' Mast Cells, but not MCAS or MCAD.  I have POTS and NCS. They recently upped my fludrocortisone to .15 MG from .1mg. I can barely stand up without being lightheaded and feeling like I'm going to faint. I take 2 Xyzal and 1 Hydroxyzine in addition to LDN, Singulair, Quercetin. Could all these antihistamines be causing this? I can't not take Mast Cell meds because I will stay in a constant state of hives, swollen lips, swollen tongue, and runny nose. How do the rest of you deal with this or is it unrelated? Thanks.

  4. I have flown with my wheelchair. When I get to the airport, the check in always asks if I need assistance getting to the gate. I say yes and someone gets paged to take me to the gate. I always tip them a few dollars depending on how much walking it takes depending on the airport. At the gate, I get priority boarding. They check my wheelchair at the gate. I am the last to get off the plane because they have to bring my wheelchair up from under the plane. The flight attendants know this. They call ahead to make sure someone is there to take me to baggage claim. You may have to wait, and I tip that person too. Inspect your wheelchair to make sure nothing got broken like arm rests, foot rests, etc. The airline will not be responsible for it once you leave the airport. Southwest broke my arm rest. 

    The process is slower, but it can be done. They will not let you sit in an emergency exit seat, but that is probably a good thing.

  5. Didn't they have some kind of pill camera that you swallow and it takes pictures? Of course, he wants biopsies, so I know I am not getting out of this. He read that the POTS patient drank something called 'Drip Drop' and they were able to do it. I'm worried about my ANS overreacting and going into a spasm again, but he seems to have totally skipped over that. That is why I was in the ER.

  6. I have not taken this med and I haven't used it for its intended purpose, but my neurologist just prescribed a drug for me very similar to this, Venlafaxine 25mg. It is supposed to have an off label use to treat POTS patients. I haven't had a chance to try it yet. Too many other variables in my life right now. 

    He just tried several SSRIs and all were a complete disaster for me. I could barely walk 10 steps without fainting. He finally decided that class of drug would not work for me and moved on to Venlafaxine. I wish Valium wasn't so hard to get because I know that works for me, but, instead I have to try all of these other meds.

    All I can tell you is that it may make his POTS worse. You will have to monitor that, but if he needs it for the intended purpose, you may not have many options. Just stay in contact with all of his doctors. Maybe keep a BP log. I used to keep morning, lunch and night; sitting, standing and flat on my back. You might want to add standing after 5 or 8 minutes, so you can show a negative difference if it turns into that kind of situation. I think there are several meds they can try if this doesn't work for him. Then if he fails this class of meds, there still may be more options.

    Hang in there. 

  7. Just saw the actual Gastro today, not his nurse practitioner. He wants to do a colonoscopy again and an endoscopy. He wants me to do research. My insurance will not pay for in patient prep. I have not had a successful colonoscopy since 2007. He says my immunosuppressive drugs and my family history of polyps (and being over 50 now) means I need to be checked. Now they are also going to be doing biopsies looking for mast cells. He also said I will need to go on a liquid diet for 3 days because my last endoscopy I still had food in my stomach because of the gastroparesis. 

    Has anyone had to be on Valium or some other med to keep your autonomic nervous system from freaking out? 

    And my Dysautonomia doctor retired, so I am waiting to get in with a new one. I'm flying blind. 

  8. I had this problem. Or I would eat and 30 minutes later feel hungry when logically I knew I could not possibly need more food. I have gastroparesis. I think there is some kind of signal issue, but I don't know. In the last 6 months I decided to run an experiment since I always felt hungry anyway, I decided to start intermittent fasting. I realized I feel better fasting. I am less hungry. This makes no sense, but I can go all day and be fine, then just eat a little and be fine. I'm still hungry after I eat, but I just ignore it. I'm not hungry when I wake up in the mornings. I'm more hungry an hour after I eat. It is totally nonsensical. It is also not for everyone for a multitude of reasons, but it works for me. I have lost 30 pounds. Maybe play around with measuring and weighing out food portions then stop to see how that makes you feel. Do you feel more hungry than you do eating what you currently eat? If not, then maybe stick with portion control or speak with your doctor about intermittent fasting. I found that having my stomach empty stopped the false signals. I do not understand why.

    I know this is a frustrating problem. The doctors then blame the weight for your illness by calling it 'deconditioning' but it is these crazy signals creating chaos that makes it worse and you feel like you just keep slipping deeper into a hole. It feels kind of hopeless, especially when their advice is to exercise. 

    I hope you figure it out and find a solution that works for you.

  9. They suspect I have SFN, but decided not to do a biopsy because it 'didn't matter'. My doctors said it didn't matter because there was no treatment that would be approved for it. The doctors decided it wasn't worth putting me through the procedure and the co-pay just to say, 'Yep, she has it.' I already had disability based on other diagnostic criteria. I'm curious if there actually is treatment that works, but insurance doesn't allow for it or if there really isn't treatment. Sometimes a treatment is classified as 'experimental', but it is commonplace to use it that way. I'm wondering if that is what you are up against. I'm sorry you have SFN and I'm sorry you are unable to get the treatment your physician recommended. 

  10. On 5/21/2022 at 6:46 AM, MikeO said:

    It was also brought up that there is evidence that certain beta-blockers also act as a primer by lowering your epinephrine levels which is what keeps things (Mast Cells) in check.  

    Interesting. I'm on Beta Blockers, but that med was not mentioned. I will ask if I am on other meds that could keep me on this loop and see what happens. It could lead to another interesting conversation.

  11. Saw Mast Cell specialist at Vanderbilt this week. This is what I got from my visit.

    I don't have Mast Cell Activation Syndrome or MCAD, but he said Mast Cell issue should be looked at like a spectrum very similar to the way autism is looked at. I am on the Mast Cell spectrum. Once you are on it, you aren't necessarily on it forever. You can get caught in a Mast Cell loop. NSAIDs lower the threshold and create an opening for Mast cells to overreact. Mast Cells are like water balloons full of histamines and mine are leaking. They are dropping histamines in strange places causing all kinds of problems. They are still learning everything leaky Mast cells can do. The plan for me is to be on meds to block the histamines and see if I am able to get out of the loop and off the Mast Cell spectrum. 

    I was lucky enough for them to ask about my full case and about my Dysautonomia, so they have put in an internal referral to Vanderbilt's Autonomic Clinic and their Rheumatology department. It looks like my case may be fully moved to Nashville by the end of the year.

  12. No. Explain that it matters where you are when you get diagnosed. First, she has tons of money, got diagnosed quickly, got the best of everything, and had a treatment plan within weeks. Mine took 30 years. Second, I was in a downward spiral and was basically bedridden when I got diagnosed. She performs, has personal trainers and is paid to work out for hours EVERY DAY. She started in a much better position. What was your job before you got sick? I sat at a desk in front of a computer 50 hours a week. Doesn't bode well for fighting this disease. Third, she likely had a nutritionist and a personal chef on staff that immediately pivoted to cater to her needs. We had to struggle to figure it out. She had an entire team behind her to support her needs. We had our own families questioning our diagnosis and not understanding our special dietary needs which ends up sometimes sabatoging us.

    We had to beg insurance company for referrals and to cover test. She likely did not. We are not the same. She started at 30,000 feet and fell 5,000 feet. We started at 5,000 feet and fell 5,000 feet. 

  13. This is going to sound odd, but, hey, that's our life, right? 

    My pharmacy switched fludrocortisone manufacturers from Teva (yellow oval pill) to Amneal (white round pill). The Teva pill works. It is what I have been on for almost 15 years. This is the 2nd time I have gotten the Amneal generic. (Both are the generic for Florinef.) This Amneal doesn't work for me. It is like I'm not taking it at all. Have any of you noticed a difference in how effective your fludrocortisone is depending on the manufacturer? If I get the Teva pill, everything rights itself within 24 hours both times. When I start taking the Amneal after being on Teva for a while, it is a gradual drop, so the change isn't sudden.

    This is so annoying. 

  14. I have gastroparesis. I was lucky to find a doctor willing to put me on a drug called Domperidone. It is not FDA approved in the US, so it isn't covered by insurance and must be compounded, but has changed my life. It is used in Canada and overseas. My doctor trained in the UK and they use it over there. In fact, I think it used to be OTC over there.  Before this drug, I was sick on the toilet and vomiting in a garbage can simultaneously. It totally changed my life.

  15. On 4/11/2022 at 7:27 AM, RecipeForDisaster said:

    Oh yes, I’m always hearing nosy people watching me eat say "OMG SALT IS SO BAD FOR YOU!!!". In those cases, I might tell them I’m on a high salt diet and that I have low BP. I do sometimes have to admit I "pass out" if it’s coming. I put salt on ice cream, and everything else, so people notice. I do crave it to an extreme. I carry it everywhere and pretty much don’t eat anything without it. Mind your business! I could tell you some other things you are eating that might be bad for you, but I don’t know your medical history, nosy people!

    I can't tell you how many times people argue with me over my salt. The local hospital forces a low sodium diet on you when you are in there. I finally just tell people that my Cardiologist has written me a prescription for salt pills and that stops it cold, but the hospital still will not give me salt.

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