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statesof

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About statesof

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  • Birthday 03/22/1988

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  1. Hi scout I as well have a wheelchair; I use a powered wheelchair because my symptoms are related to physical exertion in general so a regular wheelchair would be as bad as walking for me. Mines the Lite Rider Envy by Golden Technologies, it doesn't really look cool but it was the slimmest one I could find and had a long range cause it uses 2 batteries. With new good batteries its good for like 2-3 hours of driving straight, so if your going to a place and then sitting for a while it can last all day. For my case of POTS I wish I had gotten it sooner just cause I can actually do stuff now that is completely impossible otherwise. It can break into 4 pieces to be put into a car but some of the parts are heavier so you might need a non-POTS person to do it, for me I have like an automatic hitch lift thing.
  2. My experience may be different from others, but I found that I would have to do at least a moderate amount of cardio time (15-30 minutes) for exercise to not make me feel awful afterwards. When I would try the stationary bike for 5 minutes lets say, it was extremely hard on my brain and body, when I just decided to do 15 just to see how I would feel, it seemed to be sustainable and I actually felt much better afterwards. Everyone's body is probably different.
  3. I'm on calcium channel blockers as well; they have no effect on my POTS but do help with chest pain/ pressure. Beta blockers made me feel more lightheaded, and almost like I was less aware of things.
  4. Right on. Earlier in my illness when I was still doing the circuit of doctors and waiting for 'the one' that would actually find the exact thing to fix in me and make me back to normal again, I only had one person in my life that said 'you keep waiting, but you might never get better' and I think at the time I needed that because I, and everyone else around me, was looking for 'the answer' and in all of the doing it felt like that was my version of trying to live -- but your right I was pushing a pause button while everyone else continued to live around me. And though I think that having that pause may be necessary in the beginning because I had to learn the limitations of my new body and feel awful because of it, it is easy to exist in a chronic illness instead of live. Jump 5 years later and I never got better; I have been able to find some physical things I was not aware I could do at the beginning of my illness so it feels like I've got that back, and I was able to get a wheelchair that allows me to do more than I did in the 4 years before when I got sick -- going out with friends, taking my dog to the park, going to the botanical gardens, traveling within the US. Many of these things were dead simple and took no effort at all when I was well but they were impossible for me to do when I got sick, or somewhat possible but always included a lot of physical suffering. And now even though life is quite a bit different, it can still be quite good.
  5. Hi @CFrampsMom I'll try and give my experience to your questions, I suffer from POTS myself, and it is really difficult for people to understand (even close family and friends) because you physically don't look any different and most people have no experience suffering from a chronic illness/ condition like POTS. There is not much leeway to 'just push through' with POTS, if I do I know I will be paying for it. 1. How do I best support her? This one I really couldn't say as I think it would be different for each person. If I was to tell MY own parents what they could have done differently towards my illness (again this is only for me personally, and probably doesn't apply to others' here who also have POTS), I would say 1. Don't put the expectation on him to be able to do what he was able to do before, and understand that he knows more about his body and his condition that you will. 2. Look for practical solutions so that he can live a 'normal' life again, and be completely brutally honest about it. <-- those first 2 have to be balanced. Having POTS can mean the life you expected to live and continue in while you were well is just never going to happen; change of careers, daily activities, having to take days where your basically just resting/ recuperating, doing less on a normal basis, having to say no to certain 'normal' activities, having some friends go away and others become closer friends, always having people who just 'can't get' what is wrong with you has all been parts of the POTS life for me. Luckily I've only had a few bad doctors and my family does finally understand better now than they once did. Your question kind of reminds me of Jordan Peterson (I think he's a teacher/ lecturer) when he talks about his daughter who had a pretty serious health issues and they way he talks about the conversations he had with his daughter about her condition makes me think that that is how I would want a parent to talk to me, because it was brutally honest and he knew he couldn't never suffer or feel what she was going through but he cared very strongly. 2. How do I explain what she is going through so that others understand? It took me forever to find a 10 second answer to tell people what was wrong with me, but I came come with this: I have an autonomic nervous system disorder, so basically for me when I go to walk around or do something physical my heart doesn't pump enough blood-flow to my brain and it makes me symptomatic/ feel really sick and I can basically be in bed for days from it. -- most people don't have time for a more in depth answer, but they might say something like 'oh so it makes you dizzy or headaches?' 3. What suggestions do you have in regards to school? Outings? Honestly with this disorder any 'special occasion' or outings was something that I would completely dread, because my comfortable/ non-symptom provoking walking distance is about nothing (maybe 10-12 feet or so, then I need to stop for a few seconds and then I can walk another 10-12). Then you have to think about how many times do I have to go from sitting to standing? Are people going to expect me to carry anything? -- Even going to a doctor's appointment at a hospital was a problem, if they didn't have valet parking like they do at many hospitals now I wouldn't be able to make it from the parking lot to the front door. So for me (and I wish I did think 5 years ago) I ended up getting a powered wheelchair; which brings it's own hassle of having to explain to everyone you meet why you have it and for me at least having family members that were more uncomfortable than I was about it. But honestly I've done more in a year with it then the prior 5 years, your daughter may not be at that level of need (many/ most POTS patients will not need it) but for me I needed it. Prior to that, I wish I had said 'no' to more things because I would often put other people's expectations or not understanding ahead of what I know my body physically needed. I think it is important for any POTS patient to realize that this illness can come with non-negotiable limitations, for me mostly what I could do physically. So going to a small restaurant could be fine, but going to have dinner at a massive hotel would be h***. 4. Does anyone in the Boston area have a neurolog´╗┐ist that they would recommend? Some Massachusettes physicians on this page: https://www.dinet.org/physicians/
  6. I used to get something that may be similar, if I lay down flat I would get a weird vertigo type feeling. It would only occur if I was completely flat or if my head was lower than the rest of my body.
  7. Hi @Aida A, I've experienced a few different types of vertigo over the years with my POTS and migraine. My POTS related vertigo makes me feel like my head is all over the place and is directly related to a physical thing that I have done (walking, lifting something, going from laying to standing, etc.) and it affects my overall level of consciousness. Then I have what I think of as my migraine associated vertigo, and these are episodic and can come in clusters, and they're always random. I can be working on the computer and then suddenly it feels like everything just tilted off axis or on bad ones I can get a sudden feeling in my head like I just rolled over backwards or something. These ones usually don't affect my level of consciousness at all but they can be either mild or quite strong, and often happen when I'm just sitting and looking at a computer for too long, or if the weather is off.
  8. OCD as well, though I've had that much longer than my POTS. I don't see them both as being related in my case, but as was mentioned anxiety can worsen my POTS symptoms.
  9. Hi @Derek1987 I don't know the full nature of what you can and cannot do physically as part of a job, but what I had to do was get a powered wheelchair because the walking around the office was too much for me and my meds only partly helped for that, having this device has allowed me to not have to worry about my POTS symptoms limiting me (for the most part) when I need to work around our office. There are also just certain career options I would love to do but cannot simply because my physical limitations, so I pretty much have to do a job where I sit at a computer. I had to just think tactically about what I can do, and where am I limited? And how can I utilize a technology or medication so that I can work sustainably. Hope some of this helps.
  10. Hi @green I'm on 15mg of the regular mestinon and sometimes I got up to 30mg if I will have to do walking or a lot of ups and downs during a given day. For me personally, mestinon didn't give me any negative symptoms. The first few weeks it made me feel like I was on amphetamines or something; had this 'on drugs' type feeling to it, but then that went away. Also, I've been on it for a couple of years now, I do notice that if I move up to 30mg for a number of days in a row the effectiveness of it goes away pretty quickly (for me I noticed it already becoming less effective on day 5). I do think that it helps my POTS symptoms a bit, but overall is not a cure or anything like that. It has been a 5-10% help in my case.
  11. Hi @lieze I'm sorry your going through this and I can only share my personal experience around family members and my illness, since our situations are quite different. For me it took at least a year or so for my family to start to get that I was pretty ill, the main issue I believe is that I physically look fine. So for a while I was still asked to lift heavy things around the house, expected to go to family events or grocery shopping at large stores and to be able to do all the physical stuff I was capable of before. After a while, and it took a number of sit down talks and going to doctor's appointments, and my asking to be dropped off rather than walk, they started to get that I could not do what I was capable of before. More recently I got a powered wheelchair so I can do the things my body just can't any more, and even with this I had to introduce the fact that I needed this, and really explain to my family and friends why so that they could understand. And I still had a little judgment with my parents around not wanting for me to rely on it. But here is the thing, what my parents did not understand is that accepting my limitation and not always physically overdoing it for their sake means that my quality of life goes way up, and I don't have to feel physically and mentally like garbage everyday - but you wouldn't notice this by just looking at me which is the only point of view they have. The other side of family and friends accepting/ understanding my condition was that I actually stopped doing the things that made me sick. So I can't walk far or lift anything heavy, so when my family/ friends etc. ask me to do so I have to let them know I cannot and then I actually don't do it, even if it makes me feel bad about it because it used to be something so easy for me. But every time today that I choose to not say something and do it anyways, for the sake of either awkwardness or living up to someone else's prior expectation of me, I have to know that I am choosing to feel sick because no one can make me do anything. This all being said, once my family/ friends understood my limitations and I was able to give them a name for it (POTS), I found that they were fine with it and having to do some extra stuff to help me out like drop me off and then park a car or anything like that was not anything that they weren't gladly willing to help out with.
  12. Hi @kkirsten I used to and from time to time get the 'crushing/ tight' feeling in my chest that you have mentioned. Because of it (and it could be episodic or last days/ weeks at a time) I did do a lot of the cardiac tests; month long holter monitor, stress test with echo, and echo bubble test. The only stuff they found on the was a PFO but nothing that would explain my symptoms so my doctor said its probably related in some way to my POTS. That being said I am on verapamil now that keeps me from having the chest pain, and this I basically just asked my GP if I could try since I read somewhere else on the forum it helping someone else, and it has helped immensely for my chest pressure.
  13. The only way I have found that I 'overdo' something physically or do something that my body cannot do is the symptoms I get after doing it, and their usually pretty severe. As far as exercise, and this is kind of different from most with POTS, I have found that if I try to do something 'lightly' or go easy on exercise and only do a few minutes then it is immediately horrible for my body, but if I do a cardio exercise where I keep my bp up the whole time and go for at least a moderate amount of time (15-25 minutes) then I feel pretty okay afterwards and can do it sustainably. I can't do any exercise routine that has breaks in it, and cannot do anything with weights. With my body I'm pretty much either sitting or jogging/ bicycling with not much room in between.
  14. Hi @RaniNightOwl I had the simialir fear related to taking new meds because neither my doctors nor me knew how they would affect my body; I've found for myself that desperation or just being irritated at my progress was the thing that made me say 'screw it' and try different meds, I also start with much lower doses of any med just so the potential 'side effects' would be less severe, and my body is really sensitive to many meds. As far as anxiety/ fear, similar to stayathomemom I do the meditation thing, that and over time getting used to the repeat symptoms of this condition and trying to live a normal life while applying solutions to mitigate those symptoms in my everyday life. Not everything is in my control, but I do know if I do x, y or z I will always feel bad so finding a workable solution around those is where a lot of my mental time goes to.
  15. I'm in Illinois, there is also Dr. Janice Gilden in the Chicago area as well as Barboi. I believe Milwaukee, Wisconsin also has some POTS knowledgeable doctors. You can also check the physicians list here: https://www.dinet.org/physicians/
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