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  1. Hi. Does anyone have experience with the Long Covid clinic affiliated with Emory? I read that they are doing treatment of POTS and chronic fatigue. Thanks.
  2. Thank you both. My blood sugars have been normal. I appreciate the counceling point. I was thinking about the overall emotional state and severe chronic fatigue at first, but after the last episode (when I was feeling relatively well) I'm pretty sure it is not the fundamental issue, like the final straw sending me over the top. It is only ever triggered by frustration and is triggered every time I am frustrated. I am pretty sure this is a mis-fire of the fight-or-flight response to a stressor.
  3. Hello, Everyone. I know this thread is old and there are others like it, but I have questions for those who have sudden rage triggered by an event as opposed to those who are dealing with more general irritability or unexpected mood swings. I am having frequent (1-2 times per week) uncontrollable outbursts in response to mild frustration. That is, anyone would find the situation frustrating, but I redline immediately at the slightest frustration with no warning resulting in yelling, throwing things, flailing my arms and sometimes uncontrollable sobbing after. A response by far disproportionate to the stressor. I can see and hear myself doing this, but in the moment, I have minimal control over my actions. (I was able to throw the remote at the wall instead of the tv when I couldn’t enter my password, but I could not stop myself from throwing the remote, yelling, cussing up a storm) The outbursts last up to 5 minutes, afterwards I am exhausted even through the next day. The last time it happened, I was actually feeling a bit better than usual and was in a relatively good mood, then a slight frustration for not being called on in class to clarify something I had said that had been misquoted and *bam*. Redline. I threw my notebook, my arms were flailing, I was yelling. I did manage to leave the room before the episode ran its course. After I stopped bawling outside, I returned to my seat and apologized to everyone and was okay for the last few minutes of class. After this, I was totally drained and did nothing but sleep the next day. This makes me think it is much more due to something related to a sympathetic nervous system misfire than the result of an emotional overload or over fatigue. I was diagnosed with POTS two years ago, but the outbursts only started last year. At first, they only included short fits of yelling, were no more than a minute in duration, and were months between episodes. Now it is much more frequent, severe, and damaging to relationships, not to mention humiliating. Qs: I have a competent POTS doctor who is an electrophysiologist. Is that the right kind of doctor to go to for something like this? Is neurology or psychology the better place to go? Does anyone have any clues as to how to get to the bottom of this, like things to look at or questions to ask the doctor? Does anyone have any experience in overcoming this type of uncontrollable outburst by getting to the root of the problem, not just skills in how to cope when it happens? I really appreciate any insights anyone might have. Thanks, Meg
  4. You are on to a good start with making your lists afterwards. It is not clear from your comments whether you are struggling with speech disfluency or, for lack of a better term, initiative in speaking up. Speech tharapists can help with fluency and with workarounds. Having some questions written down before you go into an appointment might help. If you are having trouble with initiative, raising your hand before you speak (like in school) might help you get that extra beat of time to formulate what you want to say. That way you can interject with your body, not just your voice. You can also take a notebook with you and write down your question before you say it. If possible, it may also help to take someone you are familiar with to your appontments. No matter how nice the medical professional is, we are always under pressure at appointments because we have such a limited time. You might find it helpful keep a journal of every time this happens so you can look back and see if there are any patterns. Take note of anything you did that helped a little and be sure celebrate any small victories.
  5. I can see in the example you site where that would be the case. I can also see in a situation like a production line where if one person isn't there the whole line stops. In my case there are other people who do the same job who work part time and only work 3 days per week. I have never seen the job description, but if they are allowing part-time for other workers can they deny it for me based on "job description"?
  6. Thank you for sharing, Pistol. I can easily do all of the essential functions of my job while I am there. That is why I am trying so hard to keep it. I just can't do 8-hour days, which the employer is claiming to be an essential part of my job. I also know my health will deteriorate faster if I am not working, both from the lack of an active schedule and from the lack of medical care/food/ housing. I appreciate all your help. Meg
  7. Hi, All. I am confused about the FMLA form and ADA. The FMLA employee form states: "An employee who must be absent from work to receive medical treatment(s), such as scheduled medical visits, for a serious health condition is considered to be not able to perform the essential job functions of the position during the absence for treatment(s)." Yet ADA states "An individual with a disability must also be qualified to perform the essential functions of the job with or without reasonable accommodation, in order to be protected by the ADA." If I fill out an FMLA form that states that I am unable to perform the essential functions of my job due to needed appointments or reduced schedule, how can I keep that position and be covered by the ADA??? How does a reduced schedule accommodation fit into ADA when FMLA says that you can't perform the essential functions of your job? By law FMLA must be applied for ongoing medical absences. Has anyone dealt with this particular conflict before? It has come up where I work. Thanks Meg
  8. Thanks, Pistol. I just don't know why they would process this when I have not asked for any time off for my husband in months. If they filed forms for FMLA, am I required to get his doctors to fill out more forms even though I don't need time off for him at this moment? I get the impression that the company is trying to force me to quit. Is there any way that doing this can be used against me? If I have FMLA for myself for a medical condition, if I get sick with something else, does that also count for FMLA?
  9. My employer has tried to force me to apply for FMLA for my husband. I never requested it. They called me in to a meeting to discuss my work schedule and started with "we understand that you sometimes have to take care of your husband. Is this true?" to which I said "yes." I clearly stated that I had no intention of filing for FMLA for him and have not needed to have time off to help him in the last year. They said that because they "have now been informed of the need" they must start the process of paperwork for this. I don't know what they gain by doing this or how it would affect me if I did not turn in paperwork for an FMLA relating to him. The only time he has come up has been in the context of turning down offered overtime. I do know that the company is not happy with me working less than 8 hours per day, even though they know that my reduced work schedule is based on my own health concerns, not those of my husband. I did sign a document stating that I would work overtime if offered and I have not been able to do that based on my own health. Does anyone have any thoughts on this? When they hand the paperwork to me can I just write something like "I am not requesting FMLA based on my husband's illness at this time"? I just don't see why they would do this. I do think they are trying to force me on to a 40-hour per week schedule or force me to leave, but I don't see how this could possibly fit in to their plan. Thanks. Meg
  10. I have been working 7-hour days for the past 6 months due to POTS. I requested an ADA accommodation and it was granted. There has been no problem until HR resigned, new management came in and they found that there is nothing on my record stating anything about an ADA accommodation. They are also saying that they don't have to do this accommodation as long as they find a different way to accommodate me. I asked for the accommodation so I can go to doctor's appintments and have time to consult with doctors during business hours. In addition to that, the reality is that I am really pusing it to be able to work 7 hours and I can't imagine trying to work more than 7 hours per day, mostly due to chronic fatigue related to POTS and to long COVID. My employer is trying to say that working 40 hours per week is an integral part of my work assignment and that doing anything different from that would pose an undue hardship on the company. Reality is that most of the year there is not enough work for everyone there and we make up things to do just to keep busy. Anyone can step in and do anybody else's work and no position is dependant on the next like a moving production line would be structured. This claim does not hold water, but it would mean a legal fight that I don't want to be forced into. I know there are different roads I can take, but I don't know what to do to protect best protect my job, including my ability to do my job. 1. I could get a doctor's note restricting me to 7 hours per day, 5 days per week. I know getting the note would not be a problem, but I don't know how long I can use that without getting fired, given their argument noted above. 2. I could continue to pursue the ADA line as far as I can take it and see what alternative they come up with. I don't know if I should add physical limitation of hours to the need for doctors appointments or how best to approach this. 3. I don't know where FMLA fits in to this picture. I have never used it before. I know a lot of people on this forum have had experience with this and I would appreciate any insights anyone can provide as I try to figure out how to approach this question. Thank you. Meg
  11. I have a condition that has similar symptoms to Meniere's, called Superior Canal Dehiscence Syndrome. So here's the thing. If the aural fullness is caused by fluid in the inner ear (the balance canals), the remedy to this is actually the opposite of what is needed for POTS. To get the fluid moving in the ear, the first plan of action is a low sodium diet. I was limited to 1500mg/day. The improvement was almost immediate. I was doing well on that diet for 5 years until I developed symptoms of POTS following a COVID infection. Now, with a POTS diagnosis, I am ingesting almost 10 times that sodium and my ear is all messed up again. Because the remedy for each seems to be the opposite of what is needed for the other, probably your best bet is to decide which condition is causing you the most problems. Get that condition under control first, then find ways of addressing the other. If you decide to treat the POTS first you should expect that your ear condition will not improve and it may even get worse. There are options for treating either condition. Once one is under control you will have a better idea of how remedies for the other are working out for you overall. I wish you all the best on this journey.
  12. Yes, I tried it. It was worth trying, but for me it raised my heartrate and I quit taking it. I am still working on what to do next. I would suggest going to a good ENT that deals with dizziness and balance issues. It is entirely possible that your ear problem is caused by a condition other than dysautonomia. My ear problem is a different condition, but it is exacerbated with having to take in a lot of salt.
  13. Okay, with a 30-day free trial, I tried the Walk'n'chair. It really is the right option for me. The seat height is not adjustable, but it was exactly right for my size. What I most like about it is that either the small wheels or the large wheels can go in front. The seat is easily reversable. I also like that I am essentially sitting on a firm bench instead of on a padded seat. I get the right height, angle, and leverage to propel myself easily with my legs. When I put the large wheels in front, I don't have to worry about the spinning smaller wheels running over my toes and the large wheels are sitting a little in front of me at a good angle to get some added power to go over doorway thresholds. The footrests are detachable. It felt well-balanced facing either direction. The larger wheels going first did very well on rough terrain. The overall width was about the width of the doorways, but because the wheels sit at an angle, my fingers were never in danger of being pinched. It folds up easily and fits in the trunk of my car. It is a bit on the heavy side, but it does have quick-release wheels so they can be removed for a lighter lift. A lot of attention went into the design of this product. Where I appreciate where GasconAlex is coming from on getting a well-fitting wheelchair, I think this product may fill a need for some who need more of a combination device. It really does well as both a walker and a wheelchair. I know I tend to be a bit self-conscious at times, but I like the fact that I can walk while pushing this and I know no one will wonder who my imaginary friend is.
  14. Thanks for the replies. I find my success in travel depends on advanced planning. I have used airport wheelchairs for years, but I had no idea on this question and could not find any information online.
  15. Yeah, I know the storage is not a problem. At worst it would go with the strollers, best it would be stored in the wheelchair slot in the cabin. I just know that I can only go a short distance on my own and I would need someone to push me. I just don't know if they can push a wheelchair that is not property of the airport (or the contracting agency that does the wheelchairs). Then, if they can't push mine and I need to use theirs, would I need to check mine as I go in the airport or can I gate check it even if I am using a borrowed chair to get there?
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