statesof

Hi momandmore, its been a while since I was able to exercise so I wouldn't know what my current hr's are like when exercising, but it may be good to ask your doctor about this and see if he feels it is a problem. I know for me when I could run my hr would get pretty high and always after exercise it would stay high for a little while until my POTS body would slowly bring it down.

As far as tilt table test related experiences; I've done two seperately and an ekg laying/ standing, and all three of the times it showed I had POTS and I felt symptom-wise differently on each different day. That being said I don't think you can know for sure ahead of time how your symptoms will be expressed on your test results, with other testing like mri's and hr monitoring I may have felt terrible and the tests came out as normal.

Welcome to the forum Lucy! Hope you are doing well, feel free to ask questions and search for answers in the forum.

Just wanted to share this radio spot on POTS/ Dysautonomia: http://www.wbcl.org/archives/2016/09/08/mid-morning-p-o-t-s-or-postural-orthostatic-tachycardia-syndrome/. It is about an hour long and they feature a pediatric doctor who specializes with POTS/ Dysautonomia speaking about the disorder and its manifestations. A lot of good information in the show.

I have not, what is FCT exactly?

One autonomic specialist I saw had me start at 120 and say the next multiple of nine backwards as fast as I could (120,108, 96...etc) while he would keep telling me to go quicker. He was taking my pulse the whole time during this, it was a non-scientific way to create a stress situation, but he could tell by doing this that my heart rate could jump very easily. So yes talking, stress, even the littlest things can get my heart rate running - it's like it is very easily reactive.

I'm had chest pain/ pressure that lasted weeks at a time, probably the longest going on 6-7 weeks, and it would fluctuate a bit daily but always be there and noticeable uncomfortable. I never had shortness of breath associated with it however. All my heart tests ended up being normal other than a PFO which would not have been a cause for my symptoms, and I'm on a daily cc blocker to control my chest pressure.

Hi astraboy, you mentioned hypermobility, has anyone diagnosed you with Ehlers-Danlos?

Hey green, I'm not sure about how much meditation can alter our autonomic system, but I do find it to be beneficial enough for myself that I do it every day. It seems like there is nothing but beneficial value to daily mediation, at least from studies I've read, but they typically will deal more with anxiety or depression and things like that. I personally do about 20 minutes of meditation twice a day, and found that the 20 minute point for me is where I actually notice a cognitive difference afterwards, more so in feeling more "in the moment", but I have not noticed it making a huge difference in my POTS symptoms.

Hey pun, other members can chime in here, but I believe that individuals with MCAS can also be suffering from POTS. Have you had a tilt table test done? It might be worth you asking your doctor about it; it is the one way that POTS is definitively diagnosed and from the heart rate changes you took it looks as if you would qualify.

I've used atenolol which is a different drug, but also a beta blocker. It did bring my bp and hr down but I never felt "good" on it; it made me feel less bad whenever I would overdue it physically but I would never feel as good or alert as I didn when I was off it. It ended up being a medication I didn't stick with.

Hey Sean, I've also see Dr. Barboi but he did not have any specific recommendations for me at the time. I've also seen Dr. Janice Gilden who works over at the Saint Mary and Elizabeth hospital, she is not a neurologist but she deals with many POTS patients and is pretty thorough in testing. And I believe his name is Dr. Chelimsky in Milwalkie, I was not able to get my case accepted but I believe some other members have seen him. Then out of area there is also Mayo clinic or the Vanderbilt clinic depending on your insurance and costs.

Hi Margaret welcome to the forum. As far as diagnostics it may help you to get a tilt table test done if it is important for your doctors to have evidence of POTS. I can only share my own experience, after getting diagnosed with POTS some of my other doctors also looked to rule out anything else that could be causing some of my varied symptoms. For me it was helpful to find doctors knowledgable about POTS, so that they weren't just combing in the dark. As far as combating deconditioning you will know your body better than anyone, but your may want to look up some of POTS specific recommendations that aim to allow POTS patients to exercise while mitigating the negative bloodflow and heart rate issues that POTS causes. I find it helpful to start doing a couple of things daily so I can know my body's physical limits, and then slowly building up or adding on, which helps me to not overdo it.

I'm slowly testing how the Mestinon affects my ability to do things physically, I think it gives me more stamina but tomorrow in going to actually do some leg weight stuff. I have noticed though that Mestinon kind of makes me feel like I'm under the influence of something, not exactly like alcohol but it shares some of the qualities. I'm not sure if that's an adjusting to the medication thing or not, I as well am just doing the 1 does a day but it seems to last pretty long, does anyone know if peridostygmine br is the extended release version?

Has anyone else had personality changes while on Mestinon? Things like motivations, changes in anxiety, or of the like?

So I finally got up the courage to try mestinon, I'm on a low dose of 15mg because I'm usually very sensative to medications, I honestly can't tell if it helped my POTS symptoms at all today but did notice some effects: Mestinon pretty much took away my anxiety, better so than Xanax except I don't have the tiredness I get with the Xanax. It also made me feel a strong urge to do things that are mentally engaging like reading, versus watching tv which is typically what I do throughout the day when I'm first starting a new medication so I can monitor how my body reacts. I also feel like my minds making connections it normally wouldn't, for some reason in some respects it is like this medication is having an almost adderall-like effect on me. It also makes me feel less aware overall and made me feel more faint-like throughout the day, I had to keep "snapping" myself out of it kind of like if you feel like your going to fall asleep while driving; I've only ever felt fail on this medication and beta blockers. As far as POTS symptoms it's really hard to say if it is doing anything, I don't like feeling less aware, almost like I'm in this cloud, but my brain bloodflow feels a bit more stable. I think I may try this again tomorrow but if it doesn't give me the mental clarity that I usually have I think I'll probably stop.

I find that my light sensitivity has a strong effect on the way I feel physically, it definately can change things in my body on a physiological level.

Hey Goodr I was on atenolol for a short while, my bp is not affected by my POTS; I found it to make me feel more "pass out-ish", I just felt like I was in a cloud the whole time on it and found it impossible to concentrate on more than one thing at a time. It lowered my bp a bit but not an extreme amount, for me it was not a helpful medication, but I never had hr's as high as yours that you mentioned.

I have experienced the ringing in ears type of tinnitus, and a few times the "wooshing" type, typically on more symptomatic days, but I associated it more with my migraines than POTS.

Hi jknh9, like Lily said, it sounds like your anxiety is taking your fear of the unknown and running with it. Nothing you can think inside your head has anything to do with reality, recognize that having anxiety is in itself fine, we all have it, especially when it comes to health concerns. It sounds like the amount of time and headspace your anxiety/ fear is taking up is not unintentionall, like most our emotions, it might be worth asking yourself how much of your time do you feel you need to worry about this until you will be okay? If it is two hours then mark it down in your calendar and sit and worry for those two hours, you'll probably get bored and stop after a few minutes, but at least you will be intentional about it. Often for me anxiety is more troubling when I let it sit in my life for days completely unintentionally, without asking myself exactly how long do I want to do this before I let it go?

I have not personally been on florinef so I cannot comment on the idea of side effects, but did you notice if the being on your feet for 5 hours at a time had any affect on your symptoms? I only mention this because I know if I am on my feet for too long I typically will start to feel worse over time.

Just looking up a quick query on pubmed, it looks as though autonomic symptoms may be common with individuals with sjogrens (http://www.ncbi.nlm.nih.gov/pubmed/22562982). It may be that she is experiencing some of the autonomic symptoms, it could be worth asking your doctor's about this.

Hey imapumpkin, what I'm hearing from your story is that your bfm is speaking to you in a way that makes you feel at best uncomfortable and at worst defensive about your health, and from what you said it sounds like she feels as though she needs to help you. It sounds like there is a bit of a boundary issues; of your bfm's not understanding that you have everything you need to take care of yourself. Have you told her specifically what is is that you need from her? Which in this case may be, your needing her to understand that you can take care of yourself, or that her current approach, although coming from a supportive place, makes you feel uncomfortable? Just some thoughts.

Welcome to the forum, I guess if I were in your position and my insurance covered it, I would try and go to someplace like Mayo clinic where all the specialists are under the same system, can see all the tests results and would possibly allow you to see all your doctors within a week or two's time; since some of your symptoms are quite severe in nature.

I'm not sure if there is a way to stop one once it is coming, though if there was a way it would be helpful to know how. That being said I do a bit of what you do; regulate my sleep pattern, move to more consistent eating habits and avoid all trigger foods. I believe both magnesium and b2 are in studies that show how they may improve migraines, I also try and rest more, I see my own migraines as sometimes triggered by overstimulation visually, or by large changes in my sleep patterns, so getting enough rest and downtime for my eyes, which might mean not sitting on my computer for long stretches, is sometimes helpful for me.