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From my own experience I would suggest that you are able to explain to your doctors how you feel on your worst days, and what symptoms/ problems you are hoping to resolve with a treatment plan. One of my doctors asked me to list the top 5 symptoms that were bothering me most so we could focus on how to resolve them.

What does the acupuncture mat do exactly? Have you found it help in any area, other than just POTS symptoms?

Hi Sam, I used to have very bad brain fog issues, I wouldn't say they were concentration based - more like I was in a fog and when I read a chapter of something I couldn't really tell if I was retaining it or not. For me personally amitriptyline helped my brainfog immensely, almost like it was countering the mechanism that caused my brainfog, that being said I also have significant migraine issues and depersonalization disorder, and amitriptyline was prescribed to me for migraine headaches, not any of my other symptoms, I just got lucky that it helped in more than one area. I'm still never as clear headed as the normal healthy person but I've found that just reading more has helped my brain get used to it. Sort of like when people start exercising and then over time it gets easier. Oh and amitriptyline can make POTS worse, I have to be on a low does or my head rushes get more prevalent.

I'm currently applying for jobs in a city, the hardest part for me is my physical limitations; not being able to walk more than about a block at a time unless I do it slowly. So a lot of public transportation is a problem and having to find a job in a not so huge building. I've been looking for work from home/ wireless jobs, or some part time jobs. It is difficult though since I really want to work and if I just had to sit at a computer all day it would be great, but definately has altered my possibility for employment.

Has anyone tried using one of those acupuncture mats? They look like yoga mats with tons of little spikes on it, but I guess it's meant to work similairly to what acupuncture is doing.

I actually just add salt to my water, but you have to be careful because it's a fine line between not enough and Whoa! That's salty. And you get used to the saltiness over time.

I too am trying to find out a way out of this exercise intolerance, but in the past few years I haven't really been able to make much ground. If my physical exertions are too slow I get symptoms almost immediately, if I dive right into to it then I can keep it up for a short while. Walking, running, and lifting weights are kind of out of the question for me. What I have been doing is some floor leg exercises, yoga starting at 10 minutes and trying to do that everyday for a few weeks then add another minute and continue, balance exercises like standing with one foot in front of the other with my eyes closed and try and hold that for about a minute and I'll maybe do it 8 times. And I've begun doing some flat on my back bicycling in the air with leg weights on but I can only do it for about a minute, and like you I tend to feel worse after my exercise, so usually 20-30 minutes after I feel bad and get continuously worse for a few hours and am just very fragile the rest of the day.

I was able to get a colonoscopy pretty quickly with a new gastro doctor prior to having a first time appointment with him, but I was referred by my general practitioner and it was when I was having some blood in my stool, so it warranted getting in quickly, luckily it was just an infection that was healing. I'm not sure how else you might be able to speed up the process, maybe you could ask your doctor if there is any possibility of doing it earlier since your symptoms are so bad?

I typically for myself have only noticed blood pooling in my hands or feet, especially if I've been standing for a while or showering. But I have not experienced any noticeable pooling other than that.

I definitely struggle with the physical limitations because they are more rigid where with my cognitive symptoms I can usually just push through it. Sometimes environments will be too noise or bright or just to active for me mentally and it kinda messes with how I'm feeling cognitively but I've learned to take it easier on those days and work with the better ones I have, though I do feel like I'm always working with a bit of a cloud around me. With the physical symptoms, since they are much more severe, they set a limitation on me not being able to do things I once loved to do; like exercise or go on hikes, or even just walk. And I'm not sure that I'll ever get any of that back, even just being able to walk around for a few minutes would expand my world hugely, but its a struggle to continually try and just work up through some yoga and floor leg exercises.

Do you currently have a CFS specialist? Since you have already been diagnosed with CFS is might be worth going to an autonomic specialist to see if they believe you have POTS which would be diagnosed via tilt table test and your patient history. Have you already had a tilt table test before? As far as things you can do in the mean time, are you able to do exercise at all? Doing the recumbent bike each day (if you can without a worsening of symptoms) has been recommended to try and retrain the autonomic nervous system. You can also wear compression stockings and see if they help your OI related symptoms. Or leg exercises, like doing leg lifting machines if you can, or just simple floor exercises for your legs. I think it would be hard to say, but I believe your doctors hope that resolving the OI will have some beneficial impact on your fatigue.

How long have you been on the beta blocker? Have you asked your doctor about possibly skipping a dose for a day (if they advise this as an option), or maybe taking a half dose one day just to see if it has any affect on the flushing and itching? Since they believe mast cell might be a problem have they advised you to do anything to treat symptoms for this?

I have a dog as well, I got her before most of my POTS stuff got worse so we used to be able to go hiking and go to huge open dog parks where she could really run around and explore. Now I can't even really take her on walks, but I have found a dog park near by that is smaller so on good weeks I can take her 3-5 days there. I do sometimes feel guilty that I can't give her as much as I want to especially when I see healthy people walking and running with their dogs all over, but if I stay out of the comparison game then I can focus more on ways we can do more together, even if its just sitting outside on our front steps. I think its also important to not feel like you have to do it all by yourself; for example there is this dog beach by me that is huge and I wouldn't be able to take my dog there alone, but I've gone with a friend, where I am more or less just a spectator, but my dog gets to enjoy that experience and I still get to see her happiness. So definitely using my community of friends or family to help is something that I think opens up my and my dog's life. As far as expenses I think it it just important to have your own monthly budget (something I've recently started) so I know where all my money is going, and then I can save and plan for the annual shots or any random medical problems my dog, or I might have.

My doctor recommended eating dried apricots like 4-8 a day, it's not perfect but I do think it helps.

I have POTS as well as generalized anxiety/ panic disorder. For me since my POTS symptoms worsened it is like by body over reacts very easily, so if I am anxious my heart rate is one of the first things that flares up, and one of the last things to settle down. Overall my POTS just makes my anxiety disorder more of what it already is. I don't take medications for anxiety but am on a cc blocker for chest pain; it has no other affect on my mood or POTS symptoms. I become anxious more easily since having POTS so I find I'm constantly having to push outside my mental/ emotional boundaries so that I stay ahead of the anxiety and don't get overly comfortable.

My vision often gets "hazy", it's not blurry but it just feels like I'm in a cloud or something. And the rocking on a boat feeling I get as well from time to time, that's what my vertigo tends to feel like.

So before I had my major POTS symptoms I used to love being outdoors; long distance running, hiking, going to bigger dog parks, and walking around. Since having POTS my life has been made much smaller and I really can't do many of the things I used to. The best I've been able to do lately is go to a smaller dog park (fenced in square block) and take my dog there for an hour a few days a week. Luckily they have benches too in case just the walking around there is a little much. But I still yearn for the days I used to be able to go to forest preserves and hike for hours. I'm wondering what other people are doing to get outdoors more? Part of me would love to go camping, I'm trying to see if there's a place around me where you can park close to your camp site.

I do not get headaches like these, but do you know if aspirine can be taken safely with florinef? I believe ibrofen has the ability to increase your bp further, I just personally fine aspirin to be the only non-prescription medication that helps my headaches of any kind. Typically I get the classic migraines.

my body isn't great when I tend to be dealing with stress, I can pretty instantly feel my hr being reactive to anxiety, irritability, or anger. I have found mediation and mindfullness to be helpful but they more help me to sit with what is happening and not mentally get as involved in it so the stress reaction for me mentally doesn't quite last as long, that being said it is a daily practice and not one that shows results over night. Otherwise I just try to do stuff like get out of the house and got to the dog park, which has a calming effect on me, or just eating a lot and doing something mindless like watch tv; not the most healthy thing but it works. One of the main things is identifying your stress triggers and limiting your exposure to them on days you find yourself more symptomatic.

I don't know anything about epileptic vertigo, were your daughters diagnosed with epilepsy? I personally get migraine associated vertigo, and sometimes with POTS my senses can be really sensitive to lights and sounds that I feel a sense of disorientation from it.

I did a second one just because it was done at another clinic and I think they wanted to have their own set of results in their system.

I have a lot of trouble with this, the few things that I have found that helped are getting up earlier in the morning and mindfullness, really just watching my thoughts at night and trying not to participate in them, and doing slow breathing techniques untill I feel a sense of my thoughts slowing down. Typically my mind always seems to run at night so that has been my main focus to slow those thoughts down.

My body does not tolerate dairy well, but it's more of the digestive symptoms (bloating, discomfort) that I get rather than POTS specific. I did not have problems with diary prior to my POTS stuff though.

Hey navyblue, I had said I did not have chiropractic experience, but I've had other symptoms since having POTS that sometimes stayed for weeks until things got back to normal, sometimes caused by physical things I did that pushed my body too far. Sometimes I had weird migraine like aura/ brainfog episodes for a few weeks, vision issues for a few weeks, odd bloated sensations in my head for a few weeks, fatigue problems, etc.

Hey Emma I have not had an angio, but I think the treadmill test is helpful because they look at your heart at rest and as your hr is increased. I think the hardest thing for me was that even though all my tests came out "normal" other than the pfo, it didn't change my symptoms. And for me once the chest pressure comes back it does seem to take an effort to help it normalize, I'm on verapamil which I take everyday regardless of how I feel, but I'll do the aspirin and possibly Xanax thing as well if I'm feeling that badly. It is really difficult though because on my bad days it felt absolutely horrible I wouldn't even want to get up and see people, because the chest pressure was so bad. Sometimes doing something like a minute leg floor exercise periodically throughout the day would help, and just resting, drinking a lot of water, and compression stockings and just waiting it out. My chest pressure also too sometimes seems to manifest with nausea or an overall abdominal discomfort/ tightness, it can be strange.