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Anoj

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Everything posted by Anoj

  1. i don't understand neuropathy or what should be done to treat it. all that i have seen addresses the symptoms and not what can actually repair. when i get up in the morning, my arch feels tight when i take my first steps. is that neuropathy?
  2. thank you for your compassion. i agree with what seattle said earlier about trying to remain employed and that filing for disability is risky. i was able to get it a few times through my employee disability insurance, but i have seen many others struggle with getting SSDI. but that is my personal preference and opinion. i was too afraid to explain a gap in my work history. sometimes your resume won't even make it past HR. explaining the gap because of a serious medical condition (that isn't gone, by the way!) didn't seem like a good idea. requesting accommodations didn't seem fun, either. after the way i was treated at my job, i was not confident that going to a new place with all sorts of problems would have been well-received. employers don't seem too keen on people working from home, in my experience, even with all of the technology we have today. i might be late for work in the mornings. i might not be able to drive in on some days. every day is different with dysautonomia, and that was the hardest thing for them to understand. they pinned me down to a schedule eventually. i worked from home on tuesdays & thursdays. it was a tremendous help and kept that paycheck rolling in, which was all that mattered. incidentally, i was very good at getting my job done while working from home. in fact, i may have even worked harder. and like rama said earlier, spent less time feeling crappy and trying not to faint. was more productive at home. but nothing i did was right. every little tiny thing i did was scrutinized. they drove me crazy. i looked for work-from-home jobs, but none of them paid enough. i am in the perfect field for it, but i didn't know how to find those jobs that naomi mentioned earlier. i am working half-time now and thinking about buying a private disability insurance policy through our mortgage insurer. i am not sure if that is what was being discussed earlier in this thread with mortgage disability? one other excuse for me will always be parenthood, lol. if necessary, i will say i worked part-time to spend more time with my kids. i know there are laws against discrimination, but people don't always follow them. oh! one more thing ... at one point i did consult an employment lawyer becs of some of the things being done to me, but that experience wasn't the best, either. when he learned of the company i work for, he said, "XX, that is a good company." i worked for a prestigious company in my state that politically was improper to criticize in some circles. another thing was the lawyer rarely returned my calls. i realized that lawyers want to make money, and that helping little clients like me weren't very motivating. btw, this was a good site that i consulted often: http://www.eeoc.gov/facts/telework.html
  3. does exercise help with pooling, as well as tachy? i usually see it in reference to tachy but not pooling. i commend you on your protocol, jangle. exercise has always helped with my energy level. i have been enrolled in an rx exercise program off and on for the past 2 yrs. have just renewed my membership after a long break.
  4. thanks, chaos. feeling great is relative. you are right, wouldn't it be nice for everything to be all better. i rarely think this way (wishing it would stop or being disappointed). i have had an attitude of acceptance, becs i had faith eventually this would go away. i will have to work on a new level of acceptance that maybe it won't. as for the zoloft, i had the same attitude until i realized the weight gain wasn't going to stop. i would be 330 lbs. by 2015. i can't wear my wedding ring or buckle shoes, and obesity comes with other health problems. i have thought about getting off long enough to lose some weight and maybe getting on again later when i get tired of suffering.
  5. Anoj, my doctor says that most of her Hashi's patients do not do well on Armour. I think it has to do with the body attacking the thyroid more because of the natural T3 and T4 hormones from Armour in the system. She has me on Synthroid and Cyotmel. We try to keep the TSH down between 0.5 and 2.0 or else I feel lousy. I have not been on stopthethryroidmadness yet to see if this has been mentioned, but from my understanding you better MAKE SURE YOU GET THE NAME BRAND hormones! Generics only have to be 70% of the actual stated levels of medication and this is horrible for hormones! It's more expensive, but you can't afford to have aberrant fluctuations in your thyroid levels causing more complications. interesting about the armour ... endo mentioned adding cytomel last time i was there. it's a possibility for the future. i take brand-name synthroid. we too try to keep me at well below 2 to keep the goiter/nodules under control. it's always been difficult for me to take the meds, though, so i'm only on the lowest dose.
  6. i have hashi's. i have trouble upping my synthroid, though i know i should. my TSH is relatively high for me (in the 2.5 range). any stimulant, including synthroid, makes me too dizzy to function. however, i am thinking of upping it anyway and just white-knuckling it until my body adjusts, which i hope it will. my goiter is larger, and still have nodules. doc mentioned adding T3 last time i was there. altho my endo isn't fully convinced of many of the things discussed in this thread and on the stop the madness site, he was willing to listen and experiment. i tried the golden answer (armour), and it didn't help. of course, i didn't stick with it for long. upping my synthroid is on my iist of things to do, after i finish weaning off of zoloft (if i can ever get there).
  7. keeping my high-intensity, full-time job was one of the most difficult things i did post-POTS. i am now working part-time, in my field, and immensely happier. it's scary, though, because i don't have disability insurance anymore. my husband is doing his best to take care of us. i am now making a third of what i was before. honestly, we are doing OK money-wise! we save a lot by not eating out, and i cook lots, now that i am home more. the discrimination and treatment i faced at my previous job was terrible. i've written about this on this board before, if you want to search. i chose to ask for a reasonable accommodation under ADA - working from home. they simply had to comply becs it is the law. i was treated horribly, though. my office was given to someone else, and i was pushed into a cubicle. i was taken out of leadership meetings. i was taken off of projects that reaped bonuses for others who took over my work. i was told not to discuss my illness with anyone. i was told not to complain to anyone if i felt sick. etc., etc. it was a terrible environment, and i am eternally grateful that i am not there anymore. before i left, i told the HR manager EVERYTHING in my exit interview. i was hoping they would fire the witch, but she is still there and continually climbing up the ladder. it was very important to me to keep working and not have a gap on my resume. i was worried about qualifying for disability, based on others' struggles. i'm glad everything worked out the way it did for me (for now). i have never hated anyone more than my previous boss. i still wish she would get what she deserves, but sadly people like her often are the ones who get ahead.
  8. that's good to hear, angela. did you stop feeling dizzy or like your brain was stuck? i can't remember how you described it earlier ...
  9. I'm down to half a dose of Zoloft, and pooling like CRAZY. I was feeling great before i started weaning off. I thought my body was healing, but now it just seems the progress was artificial from taking meds. Disappointed Becs I thought I was getting better.
  10. Adderrall was also shown to help hyper POTS. Seems contrary Becs it's a stimulant, but that's what has been shown. Sometimes these things don't make sense.
  11. Florinef gave me BP surges, but they went away after my body adjusted. I took the lowest effective dose, which for me was .5 every other day.
  12. This drug helps my dysautonomia immensely. But everyone is different. Good luck!
  13. How is it going? Please keep us posted. I am interested in your outcome. I tried this before unsuccessfully but am interested in trying again. I got zombie/freeze feeling but wondered if it would eventually go away if I were more patient.
  14. Does he perform testing (Ttt) to dx, or does he just review your previous records?
  15. i get plenty of sleep, rest up in bed during the morning, and go on with my day around noon. helps me a lot to ease into the day slowly.
  16. tapering off anything seems smart to me, imo. buspar has been shown to not be very effective for anxiety clinically. i don't think doctors prescribe it much anymore.
  17. when i hear you talk about "relapse" and "second relapse," it really scares me.
  18. thank you for saying all this; i should print it out for inspiration as a reminder that exercise changes our chemistry in some way - it's not just as simple as "getting things moving."
  19. i don't think most people gain as much as i did. weight gain is a common side effect; however, they say that different meds cause different side effects, and i've heard of people switching from one to another and having success mitigating their side effects. for me, every one i've tried caused weight gain. i've tried 2 different SSRIs (zoloft, celexa) and one SNRI (effexor). supposedly you are less likely to gain on an SNRI, but i gained on effexor! the withdrawal from effexor was pure HE-double-L, and i don't want to put my fragile brain thru anything like that again. i ended up being allergic to celexa and becs it is related to lexapro, i can't take either of those. the only SSRIs i haven't tried are paxil and prozac. i have heard horror stories about weaning from paxil becs of the short half-life and also weight gain with that one. i have heard that prozac is supposed to be weight-neutral, so if i ever decide to go the SSRI route again, i will probably pick that one. for me it is all about appetite. i see people say that they aren't eating more and they think the weight gain from SSRIs is related to metabolism, but SSRIs have always made me hungry 24/7, and i KNOW i eat too much. i mean, i pig out, but i can't help it! i even DREAM about food. i remember being upset when i gained 20 lbs. i wish i could go back to feeling like that, becs now i have about 80-90 extra. i went from a size 6-8 to a size 20. sorry to ramble about this, but it's been a very upsetting situation. i look at pictures of myself and can't believe what i see. add to that trouble walking and getting thru the day, and sometimes i just feel like a big fat loser! when i look at myself from 3 yrs ago, it's definitely a feeling of grief at the person i used to be, not just in the way i felt but also the way i looked. was it worth taking the SSRI, though? ... i would say yes, becs i got to live a lot more of my life while on the drug. i am only trying to get off now becs i feel my body has reached a point where it may be strong enough, and i also am not working as much so i have time to deal with the withdrawal. ANYWAY, sorry again to ramble. it's nice to be able to talk. i'll move along now. BTW, did you know buspar is not an SNRI? that may be one of the reasons it wasn't too hard to wean off of. speaking of buspar, there is another drug (vibryd) that is a combo SSRI + buspar-like drug that is supposed to not cause weight gain. i have trouble buying that, though.
  20. It is really hard to articulate in words, but for me it just makes everything better. I'm not as shaky, not as fatigued, don't pool blood, not as dizzy ... just overall better and more normal. it really ***** that it caused so much weight gain for me, becs I would have stayed on it!
  21. Well, we decided not to switch me to Clonadine. He said it's a lot trickier becs it has a tendency to lower BP further than BBs. He prescribed a small dose of Midodrine to hopefully make up for the pooling resulting from getting off of Zoloft. He was open to the idea to Clonadine, though, so I know if I want to switch later he will agree. The other weird thing was he prescribed Levsin becs he said I have a poor vagus reaction (whatever that means). Apparently, he did some studies a while back that said this drug reduces the vagus response that causes fainting. I don't have more info than that, other than he said he was the one who performed the studies, so he claims to know. The funny thing is, my first cardio mentioned Levsin but called it an "old wive's tale," if I remember correctly. Seeing how I'm not fainting anymore and suffering more from the pooling, I'm not sure I will even take it. Bu I did get it filled just in case. I have a feeling this may draw some comments here. Not sure what any of you know about Levsin. Kinda strange, imo! You'd think if it worked so well, everyone would be on it. Overall, I'm more pleased with the visit than I thought I would be. He did stress exercise but seemed more open to the idea that "DECONDITIONING" is not my problem. I think this is becs I complied with every one of his tests, and they all came out negative for the other things he suspected (sleep apnea, diabetes). I think my compliance in ruling these other things out has helped the doctor/patient relationship and is helping for him to take me seriously. He is the best I have here, so I feel I'm doing the best I can locally with what I have. Thanks for listening.
  22. I know! Here's the link to the treatment plan: http://circ.ahajournals.org/content/117/21/2814/T2.expansion.html what does PD and H mean in this study?
  23. you sound so similar to me. i just woke up in the middle of last night feeling "low." but i am hyper. don't know what to make of that.
  24. btw, i think i am finally in a position to start switching meds, as i have a new part-time job where i can rest more at home and have more "me" time for a med adjustment!
  25. i have low thyroid. i need to up my synthroid, but i haven't been able to due to dysautonomia symptoms.
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