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Jan

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Everything posted by Jan

  1. Two more suggestions for people who react to chemical smells: The Shark cleans floors with just water and it steams them so they are sanitary as well as clean. Magic erase pads clean with just water and work better than any cleaning product I have ever used. I too find smells make me dizzier than usual.
  2. I know where every bathroom is located in the entire metro area. I also know how to get to my own bathroom at night without even opening my eyes. I have tried to limit my liquid intake before bed and slept really well, then woke up to feel awful the whole next day. Or if I limit liquids during the day, I feel terrible. If you drink a lot, you have to either retain it and blow up like a balloon, or pee a lot. It is the law of physics. The hope is to find a middle ground where you retain enough to keep you upright but not balloon out. I take Florinef and it seems to help without puffing up. But I do pee a lot. I guess the solution is to find the amount you can drink where you feel the best and deal with the consequences.
  3. I am super biased and opinionated so take what I say with a grain of salt. I think the grain of salt will help more than SSRI's. lol
  4. I HATE SSRI's, they worsen my symptoms and give me severe anxiety attacks like I have never had. I LOVE Benzodiazepine's, they make all my symptoms milder, I believe by calming my nervous symptom, Got rid of anxiety attacks and racing heart. Doctors are under a lot of pressure to prescribe SSRI's, and NOT prescribe Benzo's. I think this was due to thinking Benzo's caused dependency but we all know now that SSRI's can be hard to withdraw from also. There is a lot of advertising that claims SSRI's are miracle drugs. I think it is false advertising because there is tons of money to be made off of them by drug companies. I have done a lot of research on SSRI's, mostly related to depression,( which I don't have) but it is what they have researched. There are studies that show placebos work better than SSRI's. Many years ago, Newsweek had a whole issue on SSRI's and how they show NO benefit when compared to placeos, or even St. John;s Wart, I personally feel that their usefulness is questionable and their side effects minimized by the drug companies. If you talk to ANYONE who has used SSRI's they will tell you of multiple side effects they have had. I am terribly biased here because I have seen people's lives destroyed by personality changes caused by SSRI's.
  5. I am taking Florinef which is acually a corticosteroid so I am not sure if I was supposed to answer this. I don't know what medications are considered glucocorticoids.
  6. I used to only walk around the house and had a handicapped sticker so i could even run into a store for something, I had a cane chair so I could sit when I needed to. A doctor at the Mayo said I needed to retrain my body to walk and that by avoiding walking I was making myself worse. This may not be true for everyone but it was life changing for me. I started very slow and now I can walk for up to an hour on a good day, depending on the temperature and where I am and how fast I walk. Standing in one place is still the hardest thing for me so check out lines can be a little difficult.
  7. I think the Mayo must get some kind of money that requires them to produce a paper now and then. I find most of what the Mayo spits out is old info, in a new paper. And it usually just discusses what we all know and they have no new ideas on cause, or treatment. My pet peeve is I really hate the word deconditioning, used like we were so out of shape we ended up with POTS. I know some pretty athletic people who ended up bed bound for years after a viral onset. And I agree with all the above posts.
  8. I have a friend who just got Botox for this after years of trying other treatments and she is now pain free.
  9. Actually, Florinef is affected by oral contraceptives, not the other way around. Estrogens, including oral contraceptives: Fludrocortisone half-life and concentration may be increased and clearance decreased. A reduction in fludrocortisone dosage may be required when estrogen therapy is initiated, and an increase required when estrogen is stopped.
  10. When I first got POTS I often felt like I was dying. It was the only way I could explain how I felt. One time I told my doctor "I feel like my life light is flickering and about to go out." I believe that what was causing the feeling was really low blood pressure and all the symptoms that come with that. My blood pressure rarely gets as low as it did now that I am on Florinef, so I rarely feel like I am dying anymore. I am really sorry you have to experience this, it was horrible, I hope you find some relief.
  11. Any oral contraceptive can be used like Seasonique, you just skip the one week of fake pills. My doctor looked up which oral contraceptive was most likely to raise blood pressure and prescribe that for me, and I took them non stop without the placebos and didn't get a period. I mainly did it for migraines. It got rid of the "week from ****" I had right before my period started and got rid of the menstrual migraines. I think it also kept my blood pressure higher which was good for me. Once in awhile I had break through bleeding and had to go off it for a week to get a period and it always made me so grateful to be on them, I was on them for years and have nothing but positive things to say about them. I took them right up to menopause, stopped the pill, and went into menopause. I really love menopause...no up or downs, no week from ****, no period. Love it.
  12. I was house bound due to anxiety. It feeds on it's self and just gets worse if you can't get it under control. When I worried that I would get anxiety, it triggered anxiety. Anti-depressants, especially SSRI's made it worse for me. I spend hours meditating and "relaxing" with no luck. I started to take Lorazapam "as needed" and went to counseling. The counselor suggested taking it in the AM and PM and that changed my life. It stopped the cycle. When I took it "as needed" I was still experiencing anxiety, but then controlling it by taking the med. By taking the meds 2 X a day, it warded it off. And if I am feeling ill, and start to get a racing heart, I don't get the panic at all anymore There are people who are against long term use of the benzo group of drugs because they can be addictive for some people. I have not increased my dose in 10 years and it still helps. It is a miracle drug for me. I also adopted the Mantra 'This won't kill me" which I repeat to myself when ever I an feeling particularly ill and feeling dizzy.
  13. I took it once at night. It got rid of my migraine but I thought I was having a heart attack. Fast hard beats, sweating, panic etc. I was up all night in a sweat wishing I could untake it.
  14. Hey CharmedLInz, are you a red head? I have read that red heads need more sedation. I am red, or used to be before the gray came, and I have always needed more pain killers than others.
  15. I haven't ever had anesthesia but I have to say the stuff they gave me for my colonsocopy was great. I didn't go all the way under, I babbled the whole time but I have no idea what I was babbling about. At one point I said it hurt and they upped the stuff. Afterwards, they gave me some animal crackers that I was playing with. My 22 year son was there for me, and he couldn't believe how goofy I was acting. I asked for extra crackers because I was playing, "Who will win, the giraffe or the lion" and eating the loser. I was sorry it wore off that afternoon. As for the prep, I honestly didn't find it as bad as the flu or normal diarrhea. With the flu you have a fever and achy and don't feel well, but this is just a lot of trips to the bathroom. Just drink a lot. I ate green jello to the point that the liquid coming out was lime green. Pretty odd.
  16. I found the Mayo in Rochester to be good at diagnosis and poor at follow up. They refused to contact my referring doctor and even when he contacted them he got a one paragraph summary, no future recommendations. When I didn't improve I called the doctor I saw at Mayo and he did not return my calls. I had a friend who went there and he got sent to PT and a cardiologist when he was there and they worked with his PT back home on exercises that would help, and also his assigned doctor referred him to the POTS clinic and who ever he got worked with his home town doctor. Totally different experience than mine. I never got a referral to PT at all, They have a specific autonomic disorder clinic, that specializes in POTS. If you go to the Mayo, have your doctor refer you to them directly. I was referred to Internal Medicine and even though they have this specialty area of the Mayo, the arrogant doctor I was assigned to said he knew as much as they did about POTS and wouldn't refer me to them, and I couldn't go there without a referral.
  17. My vitals don't reflect how I feel. I sometimes think it is the variation in vitals that makes me feel dizzy and not the individual reading. I stopped taking my BP and pulse because sometimes the readings were bad when I felt good and I would find my self questioning if I really felt well. When my BP is really low I feel horrible, but other than that, they don't usually reflect how I am feeling.
  18. Lily, I had to go to a SS doctor and he said he didn't know anything about POTS but could see I was disabled and he wouldn't disagree with my primary doctor. They are supposed to be independent. I think the primary purpose of sending people to SS doctors is to discourage people and make them give up. (I know, I am so cynical) I also had to see an SS shrink. I don't know what he said but he must not have said I was a hypochondriac. lol
  19. Jen, The whole LTD thing is crooked in my opinion. When you are healthy, it seems like this great deal, you get some percentage of your income if you get disabled and then when you do, they MAKE YOU apply for SSDI which is also determined by your salary, so LTD never really has to lose any money at all. It probably varies by policy but I think mine was exactly like yours. One thing is the LTD company does not have access to what you get in SSDI. If you get approved they will ask you how much you are getting and if you refuse to tell them they will estimate it. They also may not know if you have kids. I wouldn't volunteer that info if you can help it although I am sure they will ask. If you didn't have custody of your kids, it is very possible another person, like an ex-spouse could be rep payee and get the money yet they still count it against you. Seems illegal. I get $50 a month from LTD because that is the minimum payment they have to send. They have even made me go to their doctor after I had been on it for years, to see if I was still disabled. I think they figured I would just not go, that it wouldn't be worth the effort, but I'll be darned if I didn't go. I am sure that visit and all the paper work involved cost them more than they paid me that year. If you ever lose SSDI, then LTD will kick back in so they want you to let it drop. Don't fall for that if that is how it works for you. One thing about SSDI vs LTD is there are rate increases (at least there usually are) for SSDI where LTD stays the same until you die. Good luck. I know how you feel about not wanting to apply. There are only so many papers I want to fill out where I explain how pathetic my life is. When I got SSDI someone said, I guess that is the good news/bad news. And it is true, yipee, I get SSDI, oh wait, yipee I am disabled. Not such a happy thing when you think about it. And don't even get me started on how I think it is such a racket that there are lawyers who make their whole living representing people to get SSDI and then they take all the back pay. And SS pays the attorneys out of your money before you get it. If SS wasn't so backed up, that whole branch of attorney's probably wouldn't exist because no one could pay them.
  20. SSDI can be way more than $900 a month. It is determined by your years of work and salary. The amount you get for dependents is 1/2 of what you receive. For example, if you get $1600 a month, and you have two kids, each of your kids will get $400 a month. When one turns 18, the other one will get $800 until that one graduates from high school or turns 18. So having lots of kids doesn't get you more money. Just lots more smaller checks. You usually act as the rep payee for the kids in order to use the money. As far as LTD, I found that much much easier to get than SSDI. And then when I got SSDI my LTD wanted me to pay back ALL the money i got from SS as back payment. And they wanted to include what I got for the kids. That money is in your kids name. You are legally required to use the money you get FOR the kids and have to do a yearly accounting of it. So I called the state insurance licensing people and they called the LTD company and they backed off on me giving them the kids money. My LTD company was a jerk through the whole thing.
  21. OMG, what a nightmare. I am so glad you pursued it and won.
  22. I found Lorazapam to be especially helpful for my racing heart.
  23. I would suggest you check with your doctor about increasing the dose and go have some chicken soup, and tomato juice, and then a pickle and some olives and lots of liquids. I edited this to include checking with your doctor. I am not a doctor, nor do I play one on TV and should never give out medical advice.
  24. I have a friend who has gotten over it almost completely. Just has to be careful not to get over heated, but that is true of most people. . One doctor at the Mayo clinic said he knew people who were back to normal. Those people aren't going to be coming to a board like this.
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