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statesof

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About statesof

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  • Birthday 03/22/1988

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  1. I have POTS and have been prescribed xanax extended release. For me it only can help with chest pressure, when aspirin and my cc blocker doesn't fully work. I take it very sparingly because its a benzo, and I haven't felt it make much of a difference with my POTS symptoms in general.
  2. Hi guys, I haven't seen many posts about this but was a topic that I wanted to bring up to see how other people are approaching it. I have POTS as well as an unknown possible complication from POTS which hasn't been able to be fully diagnosed or had any light shed on it by doctors, it is typically the 'well its not migraine' or 'well its not POTS' or 'it could be a combination of many things, but we can't at this point know with medicine being where it is'. I wanted to see how do you guys view your long term personal finances when it comes to things like retirement and things like that? I know for myself I try to keep savings specifically for medical expenses that would be larger than a healthy person my age, or savings for if health wise anything came up that would keep me from being able to do my current job, but I don't know how to view retirement. I hope that I would be able to make it to retirement age with hopefully the same quality of health that I have current, but there are some days where symptoms are so bad or even weird and unusual at times that I really can't see myself living to 65 without some serious health complication related to my current conditions. I know we all have different levels of disability from POTS/ autonomic conditions and co-morbid conditions but just wanted to see how you guys view these things in your life.
  3. Hi @Scout, as others have said I think it is difficult to, in a short office appointment with a doctor who may or may not be the best communicator, to help them to understand your condition, current issues and what has worked/ hasn't worked and get to a place where something beneficial comes out of the appointment. I've typically had the doctor either not really hear me when I speak to them or have no idea about POTS but are sure that all my symptoms must be that and so I should go back to a POTS specialist (who are also without full answers). What I have found that helps is create yourself a plan prior to the appointment prioritizing the most pressing issues, something like this: 1. Here is my diagnosis 2: Here are the symptoms I need helped for a better quality of life 3. These are the things that have/ have not worked 4. How can we best treat those today? 5. Is there other testing that will better allow us to treat those? And practice your delivery of what your going to say with time and understanding being the biggest hurdles for the appointment. I know for me trying to give a 10 year medical history with many ups and downs and question marks throughout it is impossible to adequately give to a doctor only has 10-15 minutes to get caught up. And then also being realistic; there is no general 'cure' for POTS and research and understanding on this illness is still in its infancy, but different symptoms can be managed sometimes well sometimes not depending on the person and their particular reaction to a medication -- what works for one of us may do nothing for another. All these are just based on my own experience and struggles communicating with doctors, some good some bad, so don't see this as in any way professional advice.
  4. I'm on 15mg and have been on that from the beginning since my body is really sensitive to meds since having POTS. I found that within the first day I could tell it was having an effect on me, kind of had a 'drug high' type feeling for the first week, but I also noticed I could walk around a bit further and my body would recover faster from it. 30mg is the most I've done and I can definitely tell when I'm on that dose, can walk further/ recover faster but it causes too much of a feeling of head pressure for me. The one downside I've felt with the drug is that my body gets used to it really quickly (the medication does have a short halflife), so I don't feel the same positive effects I felt the first few weeks I was on it. It just makes things maybe 5-10% better for me overall.
  5. I'm currently going through the process of relocating mostly because I'm trying to get out of an area with snow -- with a wheelchair it just adds extra limits for almost half the year. But the few factors I was trying to think about other than cost were weather patter changes (potential increase my migraines), heat (not sure how 90+ summers would affect my POTS body), and elevation changes which my body really does not like.
  6. Here's how I approached jobs/ work. My biggest problems were 1. That I couldn't do any real physical tasks (walking, lifting, etc.) and 2. I was not sure how I would feel from day to day, and was not fully accepting my limitations. First I started doing freelance graphic design on some of the freelance websites and sound design work for about two years neither of which afforded me a livable income. Then I was able to get a computer based kind of coding type of job where I could work remotely but I still had to go into the office for training and the mestinon that I was on which would allow me to do a little more as far as walking goes was already by the end of the week becoming almost ineffective. So I ended up getting a powered wheelchair which basically allows me to go into the office when I need to and just allows me to do much more in life overall -- I would have no life without it. With my condition sitting upright for long periods of time doesn't bother me at all, and I saw my only option for work as being somehow computer based. Also I had to learn how to be better with money, which kind of doing the Dave Ramsey stuff helped me with. This I just add in because just like with my health and work, I feel like I needed to approach finances from a more tactical perspective. I'm going to have higher medical costs than the 'normal' person throughout my whole life; medications, wheelchair batteries, more doctors appointments. For all of these areas it was just a process of doing what I could, with what I had at my disposal, where I was at.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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 neurologist that they would recommend? Some Massachusettes physicians on this page: https://www.dinet.org/physicians/
  12. 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.
  13. 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.
  14. 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.
  15. 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.
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