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Everything posted by KiminOrlando

  1. I drink fluids and it goes right through me. The same with IVs. I wish I knew how to keep fluids too. I take florinef and salt pills.
  2. Good vent. You are not wrong. People who aren't sick much more than an occasional cold cannot comprehend life altering illness. I think well people get caught up in their routines to the point that they just can't deviate or everything falls apart. They over schedule themselves in an effort to compete with friends to appear successful. We build in so much flexibility because our bodies aren't dependable. We don't look sick. It is interesting that none of them stepped up to fill the job you used to do. Are you on disability? I am, so people who are supposed to be knowledgeable have adjudicated me 'sick'. I have taken family with me to doctors. I have passed out on them and messed up their schedule. Nobody really thought much about it until my Uncle got cancer and went on chemo. I take a low dose chemo for autoimmune diseases, so I started talking to him about Oncologists, ports, nausea meds, and white blood cell counts. Everybody was shocked I had been dealing with it for 10 years. I think they think we are just tired. Until they learn. I had to write up what my typical day is like for a disability review. Despite doing very little, it was 4 typed pages. I sent it to some family and 2 close friends to proofread. They were stunned. STUNNED. I think what we go through is just beyond most people's comprehension. Very few people even realize what the autonomic nervous system controls. Hang in there. At least you have a good husband. Maybe they will start to see what you really do all day.
  3. @Pistol Nobody else smells it. They think I am loosing my mind. If it is some kind of new Migraine, can they last for a week? I have had this happen before for 10 minutes or whatever, but never worried about it. Now it hasn't gone away. @Hen's Teeth Stress response, hmmm.... I guess that is possible. Although my stress level has been elevated for the last 18 months. Now that you mention it, my symptoms seem to have progressed in other areas in the last 18 months.
  4. What meds are you on? Meds helped me. I still get fatigue. I still rest a lot. I no longer work. There was a time that eating was too exhausting. I know that feeling.
  5. @JimL I do have Hashimoto's hypothyroidism. Curious how that can interact with smell. Sounds like I may need to book a check up with my ENT and send an email to my endocrinologist. I already have an appointment in August. They book 6 months out, unless you convince them it is an emergency. @toomanyproblems Glad to know it has the possibility of going away. Maybe next time if I could smell flowers or lemons instead of smoke this new trick would have been better received. It would be nice if just once one of these quirks would be fun or enriching. At this point, I would settle for convenient.
  6. No. No infections or colds. No increase in frequency of my normal headaches. I do have chronic nosebleeds and have since I was a child. No increase in frequency or severity since this started. The cartilage dividing the inside of my nostrils is missing due to an autoimmune disease. My ENT called it 'lupus nose'. Can't imagine that has anything to do with it, but I also didn't imagine there was such a thing as 'lupus nose' either. I will look up olfactory hallucinations. This does not sound like a fun adventure. Thanks.
  7. Ok. Weird question which is saying quite a bit in this group, but... I have started constantly smelling smoke. There is no smoke around me and it has been going on for days. I can smell other stuff too that are real, like bacon or lemons, etc, but only when they are there. The smoke persists around the clock. Is the autonomic nervous system involved in smell? At this point I am pretty sure my brain is tricking me, but why? I have intermittent headaches, but not migraine level so far, although I do get migraines. I also suffer from ocular migraines, but haven't had one with this yet. Any ideas? I have been spraying Febreze and opening Renuzit air fresheners. Now it just smells like Ocean Breeze and smoke. Thanks.
  8. Then I would trust your primary. Especially if you are trying to get disability. He sounds like he has some experience with this.
  9. I think all of us are that. Challenging as in they don't know what to do yet. By the time we get to Vandy, Mayo, Cleveland Clinic, etc, we have been through quite a bit and think we are someplace where we can get answers. I know I go in armed with a list of questions. Pretty sure many docs would prefer that I just sleepwalk and blindly follow, but I look at it as a collaboration. Just smile and think, 'Yes, I'm a challenge. Hope you're up for it.'
  10. I got sick with POTS before ever getting the flu vaccine. Since getting POTS and autoimmune diseases I have started flu vaccines for 15 years. No problems.
  11. Then I am out of ideas since you already chased down autoimmune too. I hope you figure it out.
  12. Look up small fiber neuropathy and see if this is what you are feeling.
  13. You have TERRIBLE timing. MUSC in Charleston was in the process of opening a POTS Clinic, but the physician has had to decrease his workload due to personal reasons. They are looking for a replacement currently. I don't think they are taking new patients. The original doctor is VERY good and will be VERY picky about his replacement. He will still be involved in the operations and research side. Hoping they have answers soon. You can call them and see if they have someone they would recommend unless they have found a doc since I last spoke to them. Call their Cardiology department and ask the scheduler about the status of the POTS clinic.
  14. I have many of these too including breaking ribs by coughing. My cardiologist says I almost meet the criteria for EDS, but not quite. He also told me IF I had EDS, it would be type 3 which is not detected by a geneticist. He isn't pursuing it. He said they would only be able to treat the symptoms anyway, so it really didn't matter, but I think it does. My insurance company cares because diagnoses are used to determine what is covered. Does your doctor think you have one of the EDS types seen on genetic testing or the other kind? EDS Type 3 can also run in families, I think. I hate to say it, but you sound like you fall in that nebulous category that many of us fall into and are still waiting for answers. I hope you are the exception and get some.
  15. A little off topic, but are they willing to try Domperidone for her gastroparesis? It is not FDA approved and would have to be compounded, but it helps me tremendously. It would only treat symptoms until they figure something else out. It sounds like you have a good doctor. Please keep us posted.
  16. What are your standing norepinephrine levels (bloodwork)? They may not have run this test. If not, ask why. It will tell you what they are focusing on. This is some of the bloodwork they do on the TTT. You can also do it by simply standing without moving for 10 minutes. If you pass out, it invalidates the results. If your norepinephrine is low, ask if there is something that they can do to increase it.
  17. I also have an autoimmune disease so that in combination with dysautonomia and Hashimoto's thyroiditis is what did it. I just had to requalify with a full and complete re-evaluation process. It was an 8 month process and I was slated to see a Social Security doctor for an examination.
  18. My doc does this every visit. Poor man's TTT. Wants to know how your BP and HR respond.
  19. Hey, @Derek1987. We have the same job! Tedious, isn't it? And I have yet to get paid. Where is HR? I would like to complain.
  20. I had to completely give up working. What else can you do skill wise and medically? I can see how it would be dangerous to continue welding.
  21. I have night terrors. I actually dream that I fall asleep in the bed and room where I actually am, wearing what I am wearing and am terrorized by things going on around me. I wake up screaming, but can't tell if I am awake because it is all exactly the same as the dream except I don't know if there is an intruder in the house. It has been happening for decades. Even when I stay in a hotel, the dream is about the hotel room. It is amazing the detail I don't even know I can remember. If you ask me those details when I am awake, I wouldn't remember them.
  22. When I was the kind of tired you are talking about, I had untreated pernicious anemia. Not sure that is what is happening with you, but nobody thought to check with me.
  23. That is great news! Let us know how the new doctor is. We NEED some good ones in Florida. Hopefully this new treatment will work and get fast tracked with the FDA.
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