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KiminOrlando

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Everything posted by KiminOrlando

  1. So when my nose runs like someone turned on a water faucet when I bend over, is that CSF or normal?
  2. I was told to quit my job and get married. It is just a thing bad doctors do instead of admitting that they don't know what is wrong with us. Keep searching.
  3. Yes, I take it early and drink a gatorade first thing. Then salt pills and water. Then another gatorade. I felt better within 48 hours.
  4. Mine said that I was flat and suffering from extreme fatigue and pain. Just walk in there and show them what is happening.
  5. An SSDI case worker is the one that represents the government. They gather paperwork and may even make recommendations about approval. I don't know how much authority they have, but they have input. They are not on your side. Nobody from the government is on your side.
  6. That sounds great! Yes, it would be MUCH easier. I'm very interested in this info.
  7. @MTRJ75 I'm on those pills. Here's the scoop as it was told to me by my doctor. It only comes in 50mg pills because it isn't meant to be used this way. We are using it off label. They don't have approval to make it in our dosage. You can have it compounded by a full compounding pharmacy. Walgreens etc are not full compounding pharmacies despite the fact they say they compound. Your insurance company may not cover it if you have it compounded. It will be more expensive even if they do. OR What I do is to cut the pill in half. Then split each half in half again so I have quarters. Then I split the quarters in half. It is inexact dosing and I talked with my Immunologist about it. He said it evened out because every 4 days he knew I was getting 25 mg. So far it is mostly workng. He said we would never be able to fully stop it. I'm surprised your doctor wants to start you on such a large dose. Also you need to know that even a quarter of a pill made me pass out. It did something, I don't know. I'm not sure if it works on neurotransmitters that dropped my blood pressure or what happened. You may want to ask some more questions on exactly how this med works and talk through how it would likely affect you.
  8. Try Aquaphor for your lips. I keep Aveeno moisturizer on my face. And I exfoliate.
  9. There is a good chance with craniocervical instability that it could be putting pressure on your brain stem somehow. I had a similar problem. Did they diagnose you with a standing MRI with flexion?
  10. I started at .1mg and stayed at .1mg except when I have to go under anesthesia. Then we increase to .2mg the day before and for 3 days after. I split a pill and do .15mg for the next 2 days, then go back to my .1mg.
  11. My H1 is Xyzal. My H2 is Hydroxyzine. Then I take Quercetin, Singulair and LDN. I wouldn't give up on MCAS until you load up. We changed my H1 and H2 a few times. Curious how pepcid was picked as the H2.
  12. There is still more. They can change H1 and H2 blockers. They can add Singulair. They can add low dose Naltrexone. I'm sure there is even more. Does your Neurologist specialize in MCAS? I ended up at an Immunologist to get treatment. He seemed pretty well versed in things to try once he decided MCAS may really be what we were dealing with. Hang in there. It takes a while to find something. I still have flares, but the every day stuff is better.
  13. You may have POTS. Try doing a poor man's tilt table test. Write down your blood pressure and pulse. Keep a diary. When you feel bad, take your bp and pulse while standing. If you have POTS, your heart monitor and stress tests will be normal. It is basically an electrical issue with your heart, brain and blood vessels. Only some doctors treat it, but many say they do. A POTS doctor will do a real tilt table test and collect real data, including blood work, but this will at least give you an idea. Ironically, Toporol is often used to treat it. I take it. The theory is that it keeps your heart from beating too fast and causing your heart to not have time to fill with blood before it pumps. If it can't fill full, your bp drops, which triggers your heart to beat faster, which lets your heart fill even less. Toporol or other beta blockers help break that cycle. Google poor man's tilt table test or use the search feature on this site. I hope you find answers for your situation. I can't tell you the number of times I have been sitting in aisles of stores. The shoe department at Walmart is my safe space. The mega pack of toilet paper makes a great foot rest. POTS is a type of Dysautonomia so you may very well have googled your way into answers.
  14. I had Moderna and had no problems. I will say it is not uncommon to have dysautonomia and an autoimmune disease or multiple autoimmune diseases. It may just be a progression of your dysautonomia or it could have been the vax. It would be good feedback for Moderna and it may be many years before they can compile and interpret the data. The vax is still considered experimental. Are they able to put you on autoimmune meds to control this? Will the follicles grow back? I hope they can do something. It is just something else you shouldn't have to deal with.
  15. I can't lose weight to save my life. I gain.
  16. Yes. My Ear, Nose and Throat doctor checked my hearing, said it was fine and that was it. Drives me nuts.
  17. @MTRJ75 This is a fact. There should be a way we can work when we can even if it is through a temp agency. You are correct. The system needs to be fixed. Once you have a chronic illness designation you shouldn't have to requalify.
  18. Ok, so I have SSDI? I have the one where nobody cares about my assets. I can't earn over a certain dollar amount per year. My attorney warned me not to try to go back to work unless I was certain I could do it because I would have to requalify with credits within a 5 year time frame, I think. She said it is better not to try if you have a chronic illness because you aren't cured and it can flare up or progress at any time without warning.
  19. I think you have them reversed, but otherwise correct. I am on SSI.
  20. I have been on it for 15 years and it changed my life for the better. I have minimal to no side effects (weight gain). My doctor did not stop it for my COVID shot or flu or shingles. It may be different for you, but I would certainly encourage you to try it if your doctor is recommending it. All of these meds list dire consequences if you read the warnings. You can also get struck by lightning or, technically, your heart could stop when you faint. Life isn't riskless. I would educate yourself to know what to look for, but don't let anxiety bring on symptoms. Go in thinking, "This is the med that will give me my life back" and it just might. I hope this is the one for you. Good luck.
  21. In the meantime, seek out doctors knowledgeable in dysautonomia to get additional documentation. I was re-reviewed and had to re-qualify. They will send out routine paperwork every year or two, but a real review is HUGE. It is like filling out the paperwork all over again, this time without an attorney. I re-qualified, but it was very stressful. Be sure to read and understand the reasons you were approved so you can stress the continuation of those things in addition to any new issues. Changing issues would be a new approval, which would be harder. Photocopy everything you send them and try to use very similar explanations. Everything is so different from day to day with us that we may stress one thing one day and something else another. This muddles the issue. Keep continuity. Our situation is so complicated even doctors don't understand it well.
  22. I was put through a bunch of diagnostic testing and put on meds that made my life much better. My doctor was Dr. David Robertson who is now retired. He took his time and looked at everything. I hope you get a good one and they can help you like they helped me.
  23. @CallieAndToby22 Thanks for the info. My family lives within a couple of hours of UAB so maybe one day I will make an appointment. I have been toying with looking in to a Dysautonomia doctor there or Vandy. UAB seems to have a good autoimmune disease department as well, so I am tempted to go there despite Vandy's reputation. My doctor at Vandy retired so I would be starting over.
  24. @NinThere was no test other than what you had. Mine was negative. He made a clinical diagnosis which means he decided I have it without any positive tests based on my symptoms and my response to the meds used to treat MCAS. I'm hoping the PFT results will give his diagnosis some kind of scientific credibility instead of being an educated guess.
  25. Nosebleeds are common with many autoimmune diseases which is often part of dysautonomia. I have this. I also have 'lupus nose' where the inside middle has a large hole in the septum. Curious if that has anything to do with it.
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