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Jan

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About Jan

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    Minnesota

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  1. I started on .1 for a month. Went to .2 for a month. Then went to .3 where I felt crummy so went back down to .2 and have been on that for over 10 years. I have to take the med with food or milk or I get stomach pain. I switched to taking the full .2 ONCE a day rather than twice and didn't notice a difference. I take them a few hours before I get out of bed so it is working when I get up. The med can cause sleep difficulty in some people, so it was recommended to me to avoid taking it close to bedtime. It seemed like it took a long time for it to really help, like months and
  2. I like the advice to go in the winter vs summer. The only advice I can add is to stay on the Disney Campus. When I went with my family, I was able to hop on the Disney transportation system and meet up with them later in the morning, return to our room when I was tired, meet up with them for dinner at Epcot etc. I loved that place.
  3. I tell people I have low blood pressure and alcohol is a vaso-dilator and it drops my blood pressure and makes me feel like I am going to faint. No one has ever tried to push it on me after that. It doesn't actually make me faint, but no one wants someone they are partying with to faint so it is easier to say than say going into details about my medical issues.
  4. Correlation does not prove causation. When I was first diagnosed, and desperate to find a cause for symptoms, I came to this forum and found many people reported food triggers. I started giving up everything people on this forum found to be triggers. Potatoes, tomatoes, carbs, veggies, dairy, fruit, you name it, I felt sick after eating it. Eventually there was nothing left to eat. What I eventually found was that symptoms would flair unrelated to what I ate. Sometimes symptoms are just worse than others and I found tying it to the last meal killed my quality of life and incr
  5. How are our high heart rates different from an aerobic work out? I like to just pretend standing up is my workout.
  6. Is she lying flat when she rests? If so, maybe sitting upright in a recliner would help. I am always more symptomatic after lying flat.
  7. I have taken Florinef for almost 20 years and take Motrin on a pretty regular basis and haven't had any problems yet. I always take the Florinef with milk or food or I get stomach pain.
  8. I buy a bracelet that has a compartment in it that you can put a tiny sheet of paper in. I put my name and emergency contacts, my medial conditions, my meds, my doctor and my allergies in tiny print on a piece of paper. They have some bracelets with a medical symbol on them and others with just ID for people who want to have ID on them or their kids. I have included a link below. I am not affiliated with the company, I am just including the link because it is the one I use and it is reasonably priced and you can change your info as often as you like. I cover my info in clear packing tape s
  9. Even if you were perfectly healthy, you would lose the ability to walk, stand and sit up if you stay in bed. That is part of the reason they get people walking right after surgery. My suggestion is to get out of bed every day. Take a shower and get dressed even if you need assistance. Lay on the couch instead of bed. Elevate your head. A recliner is good. A doctor at the Mayo told me I had to "retrain" my body to be upright. Anything up right is good. When I started on my recumbent bike, I had it on low tension and could only do a couple of minutes at first and increased it very
  10. i should clarify that when I was on the pill, I took it without the 7 day break and didn't get a period. Once in awhile I would get break through bleeding and the only way I could get it to stop was to go off for the 7 days and get a period. I would have to schedule the break for a week when I had nothing important to do because it was truly a horrible week with a migraine and POTS symptoms that were really bad. You can take any oral contraceptive without the break if you want to avoid the hormone fluctuation and not get a period. You don't have to take one that is marketed that way.
  11. I stayed on the pill until menopause. It really helped. Menopause also really helped, I highly recommend it. Hot flashes are cake compared to migraines and POTS symptoms.
  12. Stress definitely causes my POTS to get worse and can bring on symptoms that you describe. I can relate to all your symptoms except maybe hallucinating. I used to take Lorazapam, a benzodiazepine, when I was experiencing an incident of anxiety. I found anxiety/panic feeds on itself and if I could take the medication, I could get a handle on the anxiety before it took control. Having it available made me feel safe. It kicks in within 20 minutes so works great when the anxiety starts to take hold. I found it helped with other symptoms too, like my racing heart, and brain fog.
  13. I don't have Autism but when I was first diagnosed with POTS I had a terrible time with emotions, mood swings, severe sadness and anger. I am ashamed of some of the times I blew up at my young kids. I started to give myself time outs when I felt the emotions coming on. It wasn't med related. I don't know if it was psychological due to dealing with symptoms, or if was medical due to the illness but it got better and went away within the first year. I did have severe feelings of anxiety which may have contributed to the emotional break downs, but the anxiety continued long after I stopped los
  14. I have been on it for almost 20 years. People with Addison's disease are on it for life. I have assumed I would be on it for life. I have never heard of a time limit.
  15. I was taking 1 mg in the AM and 1mg in the evening of Lorazapam for over 10 years. I went down 1/4 pill in the AM for a month. Then another 1/4 pill so now I take 1/2 in the AM and 1 at night. How is that for slow? I plan to reduce 1/4 a month until I am down to one a day. If I do OK, I will do the same with the evening pill. But it seems like the evening pill really helps when I get overstimulated, which might be as simple as going to a potluck. I hope to get to "as needed" at some point.
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