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Everything posted by Jan

  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 months. I am not sure if that is typical, but if it is, I wouldn't give up too soon.
  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 increased my anxiety. And I was wrong. What I did find, was thinking a food would be a trigger turned it into a trigger. And yes, that was a psychological problem for me. As much as I love this forum, and it probably saved my sanity most of the time, there are times when I have to be cautious and remember that what applies to one person, does not apply to me. I suggest an elimination diet. Find a couple of foods you aren't afraid of and eat them. If you are symptomatic, change it to a couple of other foods. If you find food you can tolerate without symptoms, add another food, one at a time. If you have symptoms no matter what you eat, your symptoms may not be related to diet. That said, very large meals are not a good idea for anyone.
  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 so it is water protected. I buy new ones every so often because I lose mine or I get paint on it or something. I am paranoid that if I was to have a medical crisis I might not have my purse with me, or my purse would not be near me or by the time it takes the medical people find my info in it, it will be too late. I find wearing it gives me a sense of security. http://www.idonme.com/
  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 slowly. You could try one minute, a number of times a day. I had a PT who designed exercises I could do lying on my back. I had some weights I put on my ankles after I was able to do the exercises with no weights. Stand up right for as long as you can stand it and then add a minute each day. Or 30 seconds if that is all you can add. Stand next to your bed so you can fall over if you have to. Maybe keep a journal so you can see your progress because it is hard to notice. Once you can start to walk, walk a few more steps each day. I told the Mayo doctor I could manage my dizziness by only walking short distances at home holding on to furniture and not going any where. She told me that was not a good plan. She said I had to push my self or I would not get better. I went from bed bound to going out, driving, walking, being able to take care of myself. I had young kids at the time I was bed bound and HAD to help them. I would crawl if I had to. I believe if I hadn't had my kids, I would have crawled into bed, pulled the covers over my head and never gotten out. I really do understand how hard it is to get out of bed when you feel so bad. Most important is you need hope. The body is an amazing thing. You can train it. You are a team. Cheer yourself on. Believe that you can get better. I have known many people with POTS who are 95%. Those people aren't on message boards because they are back to living their lives.
  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. My OB/GYN also researched pills and prescribed one that was more likely to raise blood pressure, which in my case, was what I wanted.
  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. I had a bad reaction to SSRI's and they take weeks to kick in so they weren't what I was looking for. I think it is a miracle we all don't have social anxiety since going out can be so difficult. The Mayo clinic told me the way to be able to stand and be upright more, is to retrain your body. Sit in a recliner rather than lying down. Walk short distances and try to increase the distant a few steps a day. A recumbent exercise bike or swimming will help. Go to a Physical Therapist and get leg strengthening exercises you can do while lying on your back. I have gotten much better over time, but it took years. Try not to lose hope. The body has an amazing ability to repair and adjust.
  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 losing my temper. I felt really bad after the emotions settled down. I would be exhausted after losing my temper. It was difficult to describe what was happening to me. I don't have any advice other than maybe encourage him to take a time out when he feels it coming on and comfort him. I found the loss of control over my emotions to be really frightening.
  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.
  16. Good question, I am tapering off Lorazapam and so far so good but going super slow.
  17. I don't think you are supposed to lie down on Midodrine? I ended up in ER getting a shot of pain killer in my buns the headaches were so bad on that drug.
  18. I have had my Schwinn for many years and am totally satisfied. Got it at a bike store 15 years ago. Still works great.
  19. Florinef is similar to a steroid that is naturally released in the body in the morning and it is usually recommended that it be taken in the AM and not at night because it has a tendency to disrupt sleep. I take .2 mg each morning. When trying to find the right dose, at one time I took .3 mg and felt worse. You may just need to keep adjusting your dosage until you find the right dose for you. I take it to raise my BP which in turn lowers my heart rate. I am surprised it raised your heart rate.
  20. Is it possible to get a port put in the day before so when they need to draw blood the opening is already there or would having a port in your arm for a day be too much to deal with? Not sure if it is the act of breaking the skin or the idea of a needle in your skin that sets off the anxiety.
  21. Blacking out is not unusual for low blood pressure. If you haven't gone to an eye doctor, I would highly recommend it. You may have eye issues unrelated to POTS. There are many eye conditions that can cause an increase in floaters that should be addressed by your eye doc.
  22. I would smoke if I thought it would help me and I could tolerate smoking. As with any medication, you have to weigh the pros with the cons. Smoking raises blood pressure, and reduces pain. I considered it when nothing else was working. Honestly, the side effects of some of the meds I take are scarier than smoking, especially if you are not a heavy smoker. Perhaps doctors don't recommend it to us, even though it might help, because they would get their medical license taken away for prescribing it.
  23. Just before sneezing, most people take a deep breath. This increases pressure in the chest and briefly inhibits the flow of blood to the heart, which can lower blood pressure and increase the heart rate. But as you exhale, your blood pressure increases and heart rate, in turn, goes down. At the same time, sneezing stimulates the vagus nerve, which runs from the brain through the abdomen. In general, any time the vagus nerve is stimulated, the body’s response is to reduce the heart rate. The effect of this is minimal, however, slowing the heart perhaps only a single beat. For most people this goes unnoticed. But in extremely rare cases, sneezing can slow the heart rate or lower blood pressure to such an extent that it causes a person to pass out. In the medical literature, this is known as sneeze syncope. Some people may also have an exaggerated response to a sneeze or cough if they have a congenital heart abnormality, or if they are taking medications that affect their heart rate, like beta blockers. So....if sneezing lowered my BP, my HR would increase due to my POTS reaction.
  24. Mine got better as I got the POTS symptoms better controlled. I still fatigue easier than most people, need 10 hours of sleep a day, and can't function in the mornings, but I do a lot more during the day. I look "normal" during most days. If I over do it during the day, I can crash suddenly at night but I appreciate every day I am not bed bound.
  25. Could it be the Ivabradine causing the headaches?
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