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statesof

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About statesof

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  • Birthday 03/22/1988

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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/
  9. I take amitriptyline as a migraine preventative on a low dose, because higher doses make orthostatic hypotension worse. I'm also on verapamil which is a migraine preventative but I take it for chest pain. For me the amitriptyline is the one medication that has worked with no side effects, though with some people it tends to cause some.
  10. I tried Atenolol but for me it just made me feel like I was mentally cloudy all day, some of my symptoms were better but I had that similar lethargy type feeling and I think its because it lowered my BP. I think for my case, since my BP was never a problem beta blockers probably just aren't a treatment that would do me any good, though others have found benefits from them.
  11. Hi Nan, I was not on disability, but was able to come back to a normal job this past year. Before I was doing freelance work based around a computer so that I could work around my illness. Since coming back to a real 40 hour work week, I did have to find a job that allowed me to do what I'm capable of which means working on a computer; I would have no ability to do physical work or anything where I would have to carry stuff, get up and down a lot, or walk much. I also used a powered wheelchair when I go into the office because it is in a big building. So for me it was finding if I was capable of actually doing the job sustainable (doing as much research as I could before I took the job) and then just seeing how it went. The worst case scenario would be that I could try it, and make any adjustments necessary to do it successfully, and if it didn't work I would just have to find a new one where I could work on a weekly basis sustainably.
  12. Hi Jeff, similar to the above ^ I also find it occurs every time I stand, sometimes it is worse than others and doesn't matter if I'm standing up from a chair or from lying down; typically from lying down flat the heart rate jump is a bit worse. I also can get tachycardia randomly throughout the day, to me it just feels like my heart can just become tachycardia very easily - anxiety, and various types of psychological stress and I can just feel my heart rate reacting more so than the rest of my body.
  13. I've had this as well as WinterSown mentioned, it typically feels like sensory overload with a little bit of vertigo for me. Loud music, plus lots of people, different lighting in the room can often give me this 'out of it'/ 'drunk' feeling. It was much worse at the beginning of my illness because it would bring on a lot of anxiety but nowadays if its there it just feels like a normal reaction my brain has. I also have depersonalization disorder as well, so that can make things feel daydream like or fake or make me feel detached from my surroundings. Often times new places or lots of stimulation (sounds, lights, people, cars, etc.) can make it a bit worse.
  14. Hi @sheal if you can do exercise without feeling too bad afterwards then that's pretty awesome; it took me 4 years before I was able to find anything exercise related that I could do sustainable. But here's how I got started after basically doing nothing really physical for all those years. - Start small: as others said the stationary bike (often recommended is the recumbent) is a good starting point. I began with just 5 minutes a day, and it was important that I did it every morning. I found for me that I actually feel much better if I do a longer distance/ time so I moved it up to 15 minutes a day and began from there. After a while it just became natural to add more time, up till where I could workout on the bike for over an hour. - Find what works for your body: I can only do cardio exercises for medium to long stretches of time, I cannot do weights and doing cardio for too little of time makes me feel horrible. Doing the exercise everyday for me is much better than if I skip days in between. - all this I had to test through an uncomfortable trail and error.
  15. Hi @aaronh819 when I first got sick (this is way before POTS or anything autonomic was even considered) most my symptoms were cognitive and visual. My eyes were fine but the parts of my brain that deal with visual perception had the problem. I had terrible brainfog, it was extreme; it would be hard to remember what I was going to say next in a sentence, I would drop words randomly, I would just feel like I was never all the way there. Visually I had that 'shutter' effect at times like when you move your head from left to right you feel like your seeing frames rather than a normal smooth visual, sensitivity to light, trails after moving objects, afterimages from everything, visual snow, camera flashes and certain lights get that 'burned in' afterimage effect you mentioned, tons of small visual trails when looking at the sky they kind look like little strings moving around all over, it takes my vision a longer time to adjust when going from light to dark. I can completely related to a lot of what you experience. - most of the visual stuff was more related to depersonalization disorder in my case, and same with the brain fog, though I'll get a different type of cognitive disfunction/ brain fog that is more directly related to POTS and the blood flow to my head.
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