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Everything posted by songcanary

  1. I loved your question. My situation was similar. For 25 years I did not cook with or add salt because my husband was hypertensive. My serum sodium was always normal. But when I finally got diagnosed after three miserable years, my doctor told me to drink salt water every day. With the very first sip I could actually feel it tingle as it traveled through my body. It was such a great feeling because I knew it was going to help me. I had been salt deprived all that time and didn't know it. I wouldn't use the word 'cure', but I can say that in my case, salt was a major factor in my recovery. I recently stopped drinking salt water after eight years because my blood pressure was actually going a little too high. Who knew lol? Now I am at a normal pressure and I feel fine. Best to you!
  2. My starting dose of Zoloft was 25 mg. and I have stayed there.
  3. My story is similar to Pistol's. I started Zoloft one year ago and it has changed my life. I had to stop working because of increasing panic attacks and I really felt hopeless and helpless. I am on a very small dose - 25 mg - but what a difference. I have held a part time job since November with no panic attacks at all. It has been such a relief. Hang in there, it can get better.
  4. Yes. That is when I knew something was really wrong. I was in PT walking very slowly on a treadmill when it started. I couldn't stop and they laid me down, but I was shaking so hard for so long they called an ambulance. Resolved on its own by the time I got to the hospital. I do what the above posters do, cover up and rest. They are scary, though. They didn't kill me, and that is what is important to know. Just our crazy bodies acting badly!
  5. I agree with everything above. But what stood out for me in your post was that you are married to a great husband. I did not have that kind of support, and believe me, it was rough. I still have nightmares about it. This is a great place to vent and I did plenty lol. Plus, I learned so much from others. Hang in there!
  6. I am so happy to read your post. It is such a good feeling to be cared about and it can change everything. Similar thing happened to me many years ago and I cried happy tears, too! Sending you my best wishes.
  7. Same thing happens to me. I can't tolerate it. Even tried calcium citrate recently and got bad reflux. In the past I have had your same reaction. Citrus for me only in very small amounts! But I am ok if I follow a rotation diet so at least I can eat a clementine every few days. I do tolerate vit c 60 mg in my multivitamin every day.
  8. I loved keeping fish. Recently I downsized and did not take my tanks with me. A former neighbor took them thank goodness. But I had a male Betta that really was quite a sweet pet. I wonder if you could do that for just awhile? My Betta was easy to keep and was company. I have had dysautonomia for many years and it got better for me in time. So there is hope. Take care.
  9. Thank you for posting. I am so much better without gluten. Two celiac tests were negative, one biopsy and one blood test. Many of us are on the cusp and that is why we can't get definitive diagnoses. Hope you continue to improve! Love to hear success stories.
  10. I was diagnosed there and they were very helpful. All the diagnostics and then some. I honestly think they saved my life because I went undiagnosed for three years and was failing fast. But my physician has since retired. I would not hesitate to see the doctor(s) who replaced her. It is a top notch facility, at least it was for me in 2010.
  11. Hi Teriann, Doing better now although still not working full time. But I'm getting there. I remember trying LDN after my fibro specialist recommended it. He is a physiatrist. I was a medical mess at that time and thought what have I got to lose? After I took the first dose I had this nice feeling of well being so I continued it. No side effects at all. During that time I was also treated for hypothyroidism and dysautonomia, plus I was in perimenopause. So when those things slowly started stabilizing, I wanted to take as few meds as possible. I think I stopped cold turkey but I could be mistaken. Anyway, no withdrawal etc. so it makes me wonder if it was really doing anything lol. But I am glad I tried it. Marsha
  12. Hi Kim, I understand what you are going through. I would recommend Michael Waickman MD in Akron OH. Patients travel hours to see him. He is an allergist/immunologist and is top notch. But it does take about eight weeks to see him as a new patient. He literally saved my life several years ago and I still see him today. He is thorough and really cares. I am fortunate to live in Akron but I would drive from anywhere if I moved!
  13. Thank you for posting this. I have always made my own because the commercial stuff I have seen either contains corn syrup or preservatives. So nice that this is so pure! I have many allergies and my choices are so limited. Good find!
  14. Angelloz, I am in the same boat right now. Was doing pretty well until March when I started having occasional anxiety-like symptoms. At that point I assumed it was anxiety. (My husband committed suicide in Oct 2015) Now this week I have been nauseous, headachy and very fatigued. And I don't know if it is anxiety or a dysautonomia flare, because I don't really feel anxious about anything in particular, but when I feel physically sick I do tend to get anxious. I live alone and have a house & pets to take care of. Usually when this happens it only lasts a day, maybe two. But four days in a row is beginning to worry me. I do have a history of anxiety but have never been on meds for that. So I understand what you are going through. I think stress can be a contributor, but I don't think it is the only one. Those of us with dysautonomia have such delicate systems that it seems like it doesn't take much to tip the balance and cause symptoms. Hope this makes some sense lol.
  15. I get hives too, from food allergies. Just had some last night and I am not totally sure what even caused them, ugh! And I am pretty hip to the food allergy game. I had to laugh when I saw you mention that you ate hot dogs. OMG I would be one giant hive if I ate even ONE of those! Turns out I have multiple food allergies and I have to eat totally clean; no preservatives, mostly organic etc. I wonder if this could be part of your problem.
  16. So nice to hear from you. I saw my gp today and he thinks it is my dysautonomia acting up. So I will make a trip to Cleveland to see my specialist there. You make a good point about being stressed but not necessarily feeling stressed. It will probably take a few weeks to get in but I think it is a good idea. Thanks so much for you input, I really appreciate it!
  17. Hi everyone, I am back. Posted not long ago about panic attacks and elevated b/p while taking Buspar so I stopped it and got better. However, it didn't last and I have had spells nearly every two weeks lately of sudden onset blood pressure spikes, tachycardia, mild headache, sweating, nausea and heart palpitations. Just like what I thought were panic attacks. It happens completely out of the blue. I was blaming myself for not handling stress well but now I feel that is not the problem. Something else is wrong. So I searched the site for pheo and read all the posts. I will call my pcp in the morning. But wanted to ask if anyone has had these symptoms and been diagnosed with pheo? I understand that hyper pots and pheo share many symptoms. Any info appreciated! I have been struggling for at least a year with never feeling entirely well but can never put my finger on it. Also, can anyone tell me how to edit my signature info. I am no longer taking Florinef and LDN.
  18. I am thrilled for you! And please give your rock star husband an extra hug. I never had support like that. I am experiencing a relapse after two years feeling well, but hopefully it is just temporary. Stories like yours are so nice to read and thank you so much for posting!!!
  19. When I had this problem I used a cold pack around my neck and it helped a ton. You could even disguise it under a pretty scarf!
  20. Hi Altruism, I have been where you are. When I read your post, it does seem like you have a lot on your plate. All good stuff, but a lot. I wish I could be as active as I was before this illness, but the truth is, I can't. I had to learn to prioritize and moderate my activities. And in my case, pushing through does not work, it makes me worse. I need a certain amount of rest and recovery balanced with activity. I learned it by trial and error. I think also as the others say, that you recovered once and will again. Just be kind to yourself.
  21. Yogini, B/P is back to normal after stopping Buspar and salt water. I am pretty sure the Buspar is the culprit because I keep records and my pressure rose when I started the drug, it just never got dangerously high until recently. So in my case I think the high b/p brought on the panic and my dr kept increasing the Buspar which increased the b/p which made the panic worse! So glad it is ok now. Thanks again for your insight.
  22. Without the salt water and Buspar, my blood pressure steadily decreased yesterday right back to normal. And this morning it is good, too. So the question remains, was it the Buspar or the salt water? Well, I keep a log of pressures that goes back years and I can see that it started to rise when I started the drug. It never got into the danger zone so I didn't think much of it until this recent series of events. Btw, I had also been having blurry vision and a very mild headache with the latest dose increase. So, duh! I would say to anyone taking Buspar to watch for hypertension. It is not a listed side effect but there are a few patient reviews who mentioned it so it has happened to others.
  23. Thank you both. This is such a mystery. But today I am not using salt or taking the Buspar and will see how I respond. I appreciate your comments.
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