MeAgain...

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.

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"?

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

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

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?

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

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

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.

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.

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.

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.

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?

Hi, Everyone. I just got a wheelchair/walker device and I am flying home with it. My concern is that I don't have the stamina to get from the door to the gate with my own power and I am wondering what my options are before I get to the airport. Can I get an airport worker to push my personal chair? Do I need to check the wheelchair in order to get someone to push me in a transport chair at the airport? If the workers at the airport have to use their chairs, can I still take my chair with me to the gate? Does anyone know? Thanks

https://www.fda.gov/consumers/consumer-updates/why-you-should-not-use-ivermectin-treat-or-prevent-covid-19 https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2789362

Thank you for posting this! It was very helpful. I was vaccinated with two shots of an mRNA vaccine and I was boosted. Then came Omicron. I had a relatively mild infection. Where I may have had some orthostatic intolerance prior to covid, I came out of the illness with debilitating symptoms and a clear diagnosis of POTS. I am aware of my heart beating on a level I have never experienced before. But guess what, being aware of my heart beating means that I am alive. I would much rather live with this debilitating condition than not live at all. Even if I knew beforehand that POTS or worsening POTS could be a result of the vaccine I would 100% get the vaccine. Covid can kill you. This is nothing to mess around with.

That's a great story about Walmart. I mean, sorry you collapsed, but quick thinking for the reply. I like the blood pressure idea. It is something people can understand without freaking out. At the airport, I always use a wheelchair. I found that carrying a folding cane with me helps make an invisible disability more visible. I also laminated a TSA disability card with "BALANCE DISORDER" typed on it. (https://www.tsa.gov/sites/default/files/disability_notification_card_508.pdf) With the cane and the card, I have never been questioned. Telling them that I cannot take off my shoes prevents the pre-syncope of putting them back on. Then they do the "pat-down," swab my shoes, and I'm good to go. On rare occasion I get an overzealous frisk, but never incredulous looks or rude comments.

I can relate to the brain fog moments. That is me trying to clean the house every week. I just wander from room to room doing something with half-completed tasks I had forgotten about until I complete them all. Then, just when I think I am done, the dryer buzzes. It never really ends. My one-liner for people who who are nibby: "a form of gravitational intolerance" For TSA at the airport: balance disorder, and no I can't stand up. That keeps me out of the body scanner without being treated like a criminal or having my fitness to fly questioned. I thought about using balance disorder at the hospital, but I know I really looked like I was about to pass out. The lady there would have gotten a doctor anyway.

Thanks, MikeO. Sorry you are hurting. That is a bit of a mouthfull when I already am feeling bad. Most people without an autonomic nervous system disorder don't know what the autonomic nervous system is. Part of it being autonomic, I guess. Got anything simpler? Just a few words that are easy to say and easy for the average person to understand? Thanks

Has anyone found a way to explain POTS in a short, concise way without causing alarm? Anything with the phrase "heart condition," apparently sets people off. I had a recent experience at a hospital where I was going for some testing. Valet has been closed since the pandemic began. Although I parked right next to the elevator in the garage, it was about a full city block away from the lobby. After waiting in line for my health screening, another line for hospital security, and then over to the self-check-in kiosks I was in rough shape. I had my flip stick with me and took a lot of breaks on the way in, but I still had to keep moving to get to my apponitment. The kiosk check-in was so complicated that I needed help with the system. I called for help from the woman working the area. When she came over, she was concerned about my health. She had never heard of POTS, or dysautonomia, and didn't know what tachycardia was. When I said "a sort of heart condition," she started to run off to get a doctor. I called her back and said it was really a blood volume problem and I was okay, but needed to sit and needed help checking in. Finally, I just said that I was okay, that when I stand my heart goes wackadoodle, when I'm sitting I'm okay, "can I please just sit here on my cane and have you help me check in"? I have answers for nibby acquaintances with whom I don't particularly want to have a discussion. I have answers for friends who are genuinely interested. But it never occured to me I would need to explain something like this in a concise way to a stranger who needed to know enough to understand I was not having a medical emergency. I have found some discussions in the forum on what to say to friends and family, but nothing quite addresses this. Any ideas? Thanks

A picture can say a thousand words. One of the sensations I get is capured perfectly well in Hitchcock's Vertigo. If you can't explain it in words, show a clip. https://www.wired.com/2014/08/***-just-happened-vertigo-effect/ I also saw somebody posted this picture online. I wish I could credit the creator. I related to it so well that I am taking it in to my next appointment.

First, I can totally relate to not being able to explain to others what I am feeling. I have that problem all of the time. I get one sensation which I think is due to vestibular migraine where for a moment it looks like everything is moving away from me and a little to the left. It is not a tru vertigo sensation of spinning. I used to get the trap door feeling like Pistol describes. I had a very minor ear surgery and I have not felt that sensation since I woke up from the surgery several years ago. It is hard for anyone to say what is causing you to feel the way you feel. Finding the right doctor or doctors is not the easiest thing to do, but it can get you started in finding a solution to the problem. If not a cure, than at least know what is causing it and how to work around it. Just keep in mind that it is entirely possible to have a couple of different medical issues causing what appears to be a cluster of symptoms. It is also possible to have treatment for an issue causing other problems like side effects of medication. For problems with balance it might be helpful for you to see an otolaryngologist experienced in diagnosing vestibular disorders.

Thank you for the suggestions. I am finding th electrolyte drink mixes challenging as I have to avoid artificial sweeteners and colors due to a different medical condition. Same goes for "natural flavor" which can be another name for MSG. Lately I have been adding salt to natural apple sauce, but I am still not getting enough.

I am wondering if that holds true for drinking as well. I have a tendancy to guzzle water. I am going to try to slow down while drinking and see if that makes any difference.

I would think that adding a saline drip before a TTT would impact the results, but maybe it is not enough fluid to matter. I think they gave me about 800ml before the second round. They wanted 1,000, but it was taking a long time. The change in heart rate after the fluids still would have qualified for a POTS diagnosis, but it was a smaller difference than the first time by about 10bpm and overall much lower.

Wow, very interesting, guys. I wonder if it is because our bodies aren't processing salt properly. Not much processing when it goes directly to the blood stream. I did not even know that an iv regimen like that was an option. I will have to ask my doctor what he recommends when I see him. That won't be for another month. I am sorry you guys are going through this, but it is nice to know I am not alone and it is nice to get feedback on these questions that just can't be asked of others. The process of trial and error can be very frustrating. I also thought the tilt table test was interesting. He did the first part which is pretty much as others have described here in the forum. Then he said with the results he saw, he wanted to see what effect loading me up on sodium and fluids would do. At first he said that was to rule out a false positive, later he said that it was to make sure I can be treated for this condition with salt and fluids. After all of this effort with no result, I am really glad that he did that. I guess now I just have to find a way to get that stuff into the bloodstream.