hlt4275 Posted March 20, 2011 Report Share Posted March 20, 2011 I know that many of us deal with the overwhelming fatigue of POTS. I'm wondering of those who do, have you found anything that really helps? Are there any with POTS that don't experience fatigue?My doc started me on Nuvigil a couple of weeks ago to help with fatigue, and while it does provide mental alertness, and the ability to "push through" the fatigue on a mild- moderate day, it doesn't actually remove the feeling of fatigue from your body. I was happy with at least being able to push through (and I'm not talking a full day of activity, or working outside the home here), and I was hopeful that things would slowly improve.Now though, I'm just plain irritated and angry with the fatigue of POTS. Friday I spent a few hours preparing for my son's birthday celebration that occurred yesterday and although I was fatigued and tired I was hoping Saturday (his party) would be okay. I made it through, but hit that brick wall, and of course I'm paying for it today with horrible fatigue that isn't helped at all by the Nuvigil--it is keeping me awake, but that is about all. I was really hoping that I would find that with the med I could at least be moderately active without ramifications, but obviously that isn't the case. Granted it is better than I'm sure I would have fared without, but I'm starting to wonder if this is as good as it will ever get. There are so many things that I want to do in life, and so many things I want to do with and for my kids, and I am so darn angry bout it today!****Edited to ask....Has anyone found that if they are able to get the HR/orthostatic symptoms under control that they gradually get energy back? I asked this of my Neuro, and he said that no one knows because they are still learning about POTS, but hopefully would have more/better answers soon. I figure that you guys would be good ones to ask this same question to as I am really kind of hoping that there is merit to this thought.What does everyone else do when they hit this point and see the reality of the situation? I will never stop looking for something to help, but right now I'm having a difficult time with all of this. Thanks for letting me vent! Any thoughts, wisdom, or encouragement would be VERY appreciated! Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted March 20, 2011 Report Share Posted March 20, 2011 I think the exhaustion level varries depending on your underlyng cause of your dysautonomia. Mine happens to be mitochondrial disease, I'm not sure if any studies have been done to compare subgroups. For me nothing helps, I'm awake about 12 hours a day and I'm sitting, reclining or laying down 11 of those hours. The heavy arms and legs and feeling like I'm walking through water never leaves. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 20, 2011 Report Share Posted March 20, 2011 I tried Provigil, but had such rebound fatigue and chest pain after it wore off. I have constant fatigue which varies in intensity. When my heartrate and BP are really wonky, then the fatigue is worse. But sometimes it's just worse for apparently no physiological reason. Also, whenever I undergo a significantly stressful event, I notice an increase in fatigue which can last from days to months. Once the fatigue wears off then I start to feel as if a cloud is lifting. Still, I never feel normal. Quote Link to comment Share on other sites More sharing options...
runningshoe Posted March 20, 2011 Report Share Posted March 20, 2011 I hardly come to website anymore...so tired of pots...but did today and saw your post...I have found nothing helps the fatigue - it comes and goes. However it is true for me that my tachycardia and bp can be well controlled and I can still feel terrible. The blood flow issues are still there - headache or fuzzy head, cold extremities, bloated belly etc. Florinef and salt of course help but it doesn't solve all my problems. I logged on today because I am feeling sorry for myself and this marathon headache I have! I don't give in totally to the exhaustion. I do some form of exercise several days a week (walk, lift a few weights or some yoga) and I have 3 kids and a very part time job and a house to take care of etc. so compared to some I am quite active. However for me, and the way I lived before pots, I do soooo much less. Most of my exhaustion feel like my head is tired. I just want to put it down! My friends see me drive through town with my head up against the window. I also feel mentally tired - noise, too much chatter, reading,....those things can be hard. But I have learned to ride the low tide because a wave of energy will come again at some point.....Hang in there.I say to myself all the time: this too shall pass. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted March 22, 2011 Report Share Posted March 22, 2011 in all honestly the ONLY thing that cure my fatigue was chain smoking. Of course its a trade off by having a killer addiction, but i felt the best i have when i smoked. I quit since i had my daughter and the fatigue is horrible right now. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted March 22, 2011 Report Share Posted March 22, 2011 If you have a doctor that knows how supplements can help you can ask about DRibose, B12, CoQ10, etc. I have CFS and POTS, fatigue is rarely a problem with my supplements. Our bodies need so many things, we have to figure out what they need. Quote Link to comment Share on other sites More sharing options...
dianne.fraser Posted March 22, 2011 Report Share Posted March 22, 2011 There are a lot of elements to my fatigue - I have no thirst and didn't drink much for most of my life, so I guess I used to be permanently dehydrated (which would be expected to cause fatigue) - my fatigue levels dropped when I started scheduling fluids, and drinking them down even if it made me gag; I'm much more fatigued if I eat too many carbohydrates, but it took a long time to work out I needed to cut them back a LONG way - again, my fatigue levels dropped when my diet was adjusted; my gut never worked well, but improved out-of-sight on a much lower-carb diet - this also seemed to reduce my fatigue levels; when my coat-hanger pain is untreated, my fatigue levels are off the charts - when it returns, I see my physio and osteopath as quickly as possible. My fatigue levels go through the roof if I fail to rest enough or if I do too much physical activity or if I eat the wrong thing. If my fatige levels are too high for too long, and I'm cold and forgetful, I usually have the anaemia of chronic disease - for me it resolves with bedrest.In general, my fatigue levels stay low as long as I'm avoiding things that aggravate my illness, doing the things that soothe my illness and treating the symptoms that are treatable.Dianne Quote Link to comment Share on other sites More sharing options...
targs66 Posted March 23, 2011 Report Share Posted March 23, 2011 The fatigue is the worst symptom for me. I have neurally mediated hypotension, not POTS. I have been told I have chronic fatigue syndrome for about 20 years. It's just gotten worse as I've gotten older. I've tried a regime of thyroid meds, with and without adrenal support and found that the meds made me much worse. I also saw Dr. Myhill in Wales - she is a wonderful, caring doctor who has helped many people, but her protocol of supplements did not help me. Many of them (Ribose, B3, magnesium, co-q10) were intolerable and made my symptoms worse.I am so frustrated at what this fatigue takes from me. I am continually amazed at how my husband can function - a typical weekend day after a busy work week is get up at 8.30, go for a walk with a friend, run errands/grocery shop, do some gardening, and then meet friends at night with no effort at all. I can do one of those things on a good day, and I will probably pay for it the next, and i don't even work anymore. I am sitting here typing feeling exhausted and glad that I can go to bed for a nap shortly - missing out on another sunny spring day.Sorry to vent; I am just so sad at the life I lead. I hope we all find some help soon.***I'm just adding this line after re-reading what I posted above- sorry to be so negative. There ARE people who get better; as others here have noted, we don't hear from them very often because they are out living their lives. I take hope in the fact that people do recover enough to live enjoyable lives. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted March 23, 2011 Report Share Posted March 23, 2011 I have improved so much with my supplements. We do have to find the right doctors right doses etc of everything. Supporting our body with various things it needs is important for healing. The right blood tests are important too. It takes a lot of work but I have been doing great, from not being able to lift my head from the pillow to now walking and doing things, it is wonderful. Lipoic Supreme has been a huge help. When we are ill, we get depleted of many nutrients. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted March 24, 2011 Report Share Posted March 24, 2011 I think the exhaustion level varries depending on your underlyng cause of your dysautonomia. Mine happens to be mitochondrial disease, I'm not sure if any studies have been done to compare subgroups. For me nothing helps, I'm awake about 12 hours a day and I'm sitting, reclining or laying down 11 of those hours. The heavy arms and legs and feeling like I'm walking through water never leaves.I feel like this all the time, and "walking through water" is EXACTLY how I describe the feeling! As of yet, though, haven't found anything that works long-term, and very few effective short-term solutions...Sandy Quote Link to comment Share on other sites More sharing options...
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