statesof

Yes, I used to try and get at least 9 hours of sleep at night, sometimes I would get more when I was feeling really bad, but I noticed it would make me feel worse throughout the day; more tired, unrefreshed, more fatigue. Now I get up earlier around 7:45 each day, and though I can feel completely exhausted for the first 20-30 minutes, I typically feel much better throughout each day.

Haha, sorry just reread your post, I think I read through it too quickly.

Here is the physicians list by state: http://dinet.org/index.php/physician-list , looks like there is quite a few in Ohio.

I've had panic attack like episodes like that that would last about 15 minutes; antsy/ nervous, heat flash, nauseas, feel like I'm dying, but they wouldn't proceed with anxiety so idk if they were more related to the autonomic stuff or not.

Hey Erin, I don't have anything to add other than the part about eating twizzlers and running around the office screaming had me laughing out loud. Good luck with the rest of your tests, and hope for the best.

For me having a diagnosis has been a good thing, if I was aware of my POTS earlier then I could have maintained more cardio exercise, increases water intake, and not overly push myself like I used it. I feel like knowing the diagnosis earlier would have helped me from getting to the place I am at now. That being said knowing my diagnosis doesn't mean I have to constantly be thinking and worrying about the prognosis, but it does help me bring a daily awareness to my body's needs which has been helpful for my overall quality of life, though I can see how over thinking could make things worse.

Hey Jacquie, I'm currently on verapamil for chest pain/ pressure, which it has helped to keep under control. I don't believe that it has much of an affect on my bp or hr, though I'm on a low dose because I'm so sensitive to medications. When I was trying a beta blocker I constantly felt less aware and sort of in a cloud throughout the day probably because of the lowered bp, fortunately I have not had that side effect with the verapamil.

That's awesome Chrissy, I think it's good news for all of us!

Hi Sylvie, in my life I've found that I only have a few friends who I can speak openly about my POTS struggles with. With most people I tend to lose them when I begin explaining what POTS means, or what the autonomic nervous system is. And I do find it difficult because most people can't really understand how this affects my life, some of my friends just seem to see it as not being able to do exercise or drink anymore. That being said I actually haven't really found someone who I could just be completely honest with and say I'm really struggling with this or that today, most the conversations about my POTS tend to be a bit more superficial, or more geared towards what I'm doing about it. So I think that probably opening up and just being completely honest is something I may need to try more just to see how receptive people are about it, that being said on my worst days I usually find myself laying down on my couch and not seeing friends so maybe I need to strike a better balance.

Have you asked to the Mayo specialists what they thought about your three cases? It would be interesting to see if anyone would do a case study to find if there were similair causes or if it is all just coincidence as hard as that would seem to believe.

Hey navyblue, thanks for sharing your experience it I can definately relate to the not wanting every conversation in a relationship to be about how sick you/we feel, but at the same time I find there are only select people who can really empathize, or even just listen in a way that makes me feel heard so it's a bit of a conundrum. I found it difficult to find a doctor who could understand all my symptoms, even neurologists and autonomic specialists who are quite good still can't explain some of them. But I have been able to find doctors who have run all the usual tests and then some, so a few of the concerning options are out the window yet for those remaining symptoms that don't make sense I always carry a bit of concern in the back of my mind.

The tilt table test is one of the few tests that can show doctors that there is a problem by statistical data, as well as with the valsalva and sweat part of the test they typically run with the tilt table test. That is why it is seen as the current "standard". However your numbers on the ttt are not necessarily an indication of how bad your symptoms are, though sometimes it can be. The trouble is that doctors do not know exactly what POTS is, as far as what specific problem in the body is causing it, and how everything in your body is affected by it. And there are not many other tests that can accurately show there is a problem, that is why many of us have perfect blood tests, mris, etc. a full patient history taken by an autonomic specialist is just as important to a ttt, in getting a diagnosis. Many times they can be some of the only doctors who understand this condition well enough to make a accurate diagnosis, as well we all have a slightly different set of symptoms while sharing the same condition.

Also don't be afraid to make other appointments with an autonomic specialists/ doctor that you may be able to see sooner. If you find the help you need, you can always cancel those far off appointments.

When I was first sick I found certain mental activity very difficult, like they felt as though they were much more mentally strenuous than they actually were. I remember doing a small puzzle with my cousin and we were seeing who would finish first and even though it was a simple kids puzzle I felt like doing it was just as strenuous as taking a four hour test where you just feel mentally drained afterwards. Another thing I notice which may be a bit more similair is when I would begin to practice piano I would get an onset of nausea. Not clue why but it used to happen almost everytime I would begin, I felt like it had something to do with using different parts of my brain maybe?

I really like this book called The Unteathered Soul, by Michael Singer. It's a book about the practice of mindfulness which my psychologist is a big fan of, but it wasn't until I read this book that it started to make sense for me. It's written in a very simple relatable form that I found really helpful, I do mindfullness for anxiety and depression.

Hey DizzyGirls, I've had various spells of vertigo both migraine and POTS related as well as some of the nystagmus you mentioned. Unfortunately I have not found a way to make the vertigo better I typically have to just lie down and let it come down on its own, usually in my experience it becomes less intense after a few days, but at times it can be a little grueling. In the long run you might look at physical therapy for vertigo, my brother just completed this, he had an inner ear thing that was causing him bad vertigo episodes that would basically make him feel sick and have to lie down. It has helped him a lot but there are still daily 10-20 minute exercises he does weekly, I'm actually going to try them myself just to see if it helps me as well.

Hi navyblue welcome to the forum, you seem to have a lot of unanswered questions that would probably be best answered by diagnostic tests (tilt table, Lyme test, ect). I think it is very difficult for us to make sense of our symptoms, why a specific onset or group of symptoms manifests at one particular time. In my own case my symptoms seem to defy logic, something that is a constant frustration to me and a difficulty for my doctors in understanding ways in which they can help. Just try and find a doctor who listens and is understaning, push for the tests that can help rule things out and further your diagnoses. The "it's just anxiety" answer is something I think most of us have had to deal with until we saw an autonomic specialist or doctor who has a better ability to understand our symptoms as a whole.

Hey Mike, thought I'd share a bit of my experience since some of the symptoms are comparable to yours as well as outofadream's. I have POTS, but I also have migraine with aura, and something called deprrsonalization disorder. I do tie some of my visual/ perceptual symptoms to each of these specific disorders, however there is also some overlap where I don't know which symptoms are cause by which disorder since their all brain related. Here's some of my symypoms: Deprrsonalization disorder: the visual experience of my life looks as though I'm watching it as if it were a movie, there is a feeling of "detachment" and not being in the moment like I'm walking in a constant cloud. Also, and this symptoms better now, the world will like kind of daydream/ picture like, I used to get sort of Alice and wonderland like perceptual changes when going to new places, accompanied my major brain fog. Other times if I'm in a crowded place or a place with brigh lights it can feel mentally disorienting and it seems like when people walk by they kind of blur together like when you look out the window while driving (hard to explain). Migraine - I'll get those like you said quick moments where I feel like either the floor is moving under my feet, or suddenly the world feels like it tilts on its side quickly, I've also had strong vertigo hit me quite quickly and heavily leaving me disoriented for a few days, it's like you get the sudden tumbling over sensation in your brain even though you are sitting still. POTS - sometimes my visual perception will get this hazy feel to it as though I'm seeing through a fog, it's pretty difficult to push through depending on the situations but I notice this can easily be brought on by walking to far or over exerting myself in the limited capacity I still can. Other symptoms that I see as somewhat related are I have a harder time visually going from very light to dark, like it takes my eyes longer to adjust. My visual system is also very sensitive to changes so i don't wear glasses but if I look through a camera lense only for a few seconds my vision can feel off for 10-15 minutes afterwards, and I get after images a lot and flashes of lights can cause after images that stick around in my vision for a while.

I have pretty much constant sleep issues as far as felling asleep which could take me annywhere from 30 minutes to 2 hours most nights, though I get enough hours of sleep each night once I can fall asleep. I found waking up earlier helps and reading before bed. Not really a cure in any way but it makes it manageable. Do you have any insight into whether your diazepam is making your sleep problems worse? I only ask that because I think with most sleep/ tranquilizer medications they can worsen insomnia in the long run.

Well you certainly have a number of symptoms there some fit for dysautonomia but I think your doctors need to do more testing to rule things out. Have you gone to an autonomic specialist or had a tilt table test done? They at least may be able to help you figure out if you in fact have POTS, and direct you to medications that may be of some help. When I first started having symptoms they gradually got worse and snowballed for the first three to five months, my symptoms are quite different from yours but I also have migraine and deprrsonalization disorder in the mix. Just try and schedule appointments with doctors and bring the list of symptoms and your back story I think you summarized it rather well. In the mean time you could try salt and water loading as well as compression stockings to see if that helps, as well as some stationary bike exercise if you could manage it; but don't be afraid to take things slow. Since you mentioned SSRI's have you read about SSRI discontinuation syndrome? It can cause a number of long lasting neurological symptoms, I know it is certainly a trigger for deprrsonalization disorder, though I'm not sure if it relates to dysautonomia in any way.

Hey samip28, first off welcome to the forum, getting diagnosed was the beginning of the journey for me I still had a tough 2 years of trail and error with meds and finding what I couldn't do anymore physically before I felt like I had a better grasp on this condition. I think family is always in a difficult spot because it is hard for them to understand how someone who looks healthy could feel so poorly. Some things that helped me were pacing myself and listening to my body first, not over pushing it even when I wanted to. Doing the whole water and salt loading, and being willing to try low doses of medications so that I could figure out how it would affect my body and this helped me in avoiding unwanted side effects; I've tried some have help some that didn't. And patience always helps, but it's much easier said than done.

I find there are some things that don't go well with my POTS/ migraine body, namely milk, anything with caffeine even decaf drinks, anything with msg makes me feel really ill, chocolate, foods with nitrates in them, no alcohol, and that's all I can recall at the moment. Typically though I'll eat a pretty plain healthy diet, so a lot of vegetables and fruit, chicken, and then like pasta and fish. My POTS doctor said to eat less carbs and more protein and vegetables and stuff, but I think it's pretty particular from one individual to the next. It's very much about just trying to avoid the foods that make your symptoms worse and see how you feel from there.

If you do find that particular foods make it worse it would be worth a try to eliminate them from your diet and see how you do then. The only think that helped my brain fog is amotriptyline, no clue why though, I am actually taking it for migraines but it has significantly reduced my brain fog and has been doing so for years now. Compression stockings may also help you, I find they can be sometimes helpful.

I too have had on and off sleep problems since my symptoms became worse. This past year alone I think I've had 4 or 5 different nights where I couldn't not fall asleep. I find what makes it worse is when your having trouble falling asleep and then you start to over focus on it and then the irritability comes in, it creates a viscous cycle for me. I have found that waking up earlier and taking my meds on a scheduled time frame tends to help a bit.

I get some of these symptoms as well; if I'm in too hot or humid of an environment I suddenly start feeling like I'm running a fever. Brain fog and feeling mentally cloudy is a daily thing for me though most days are pretty tolerable while others really feel as though I'm in a fog. And random nausea can hit anytime I'm up for too long or overly hot.