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I have this as well, and I've had it long before symptoms. At least in my case doctors have told me it is not really that big of a deal, typically the chance of any complications becasue of it throughout my life are pretty small.

For you does it feel more like a POTS thing where the way you feel is more episodic and maybe you feel fine one hour and worse the next, or does the way you feel act more like a triggered response to whatever your doing physically? Because I used to get episodic fatigue and stuff like that, which would just sort of come over me without any specific cause I would notice, but now my feeling bad always is triggered by a specific physical even where I can tell the exact moment I did something bad for my head, and then the other symptoms sort of come in after that.

The title pretty much sums up my current problems. I've had POTS since 2009, along with migraine and depersonalizatio disorder. I would have daily/ weekly headrushes, feel out of it for 30 minutes after exercise, and have random points of fatigue or episodes of feeling somewhat faint-ish but I was able to do exercise normally and didn't really have many other autonomic problems. Then two years ago I had one specific headrush that sort of changed everythign from that moment forward, if I did exercise i would get really bad vertigo for hours, along with a strong hangover feeling for days, and my head would have the most awful feeling in one particular area, my arms would feel weak and shaking, and it felt like my brain was recovering from an injury. So the last two years I've retriggerd this brain thing over and over again spending 4-6 days a week in bed recovering each time. It changed from being triggered by doing light exercise, to being triggered by walking only a block, or standing up and sitting down to many times in a short duration, or like this week even just standing up from a chair and bending down to quickly after satnding, which sort of feels like I'm bending down at the same moment the delayed heart rate response is rushing blood back up to my head. The short episodes basically make my head feel awful for days and force me into bed, not feeling my head is well enough to sit up or stand for more than 20-30 minutes at a time. All my doctors have been stumped, and the POTS specialist I saw at mayo said this long lasting effect is not a part of POTS, but since all my test are normal other than TTT, they don't have an answer. Anyways just wanted to see if anyone else could relate to this, and just to add; I never feel crappy like this unless its triggered by a physical event, like sitting outside in heat, or standing for a while, or just sitting around I will never feel this way, or have anyone of these episodes.

I find myself in the same boat, I do have POTS but feel very strong that I have something else going on, however it seems very difficult to find a doctor who can definatively say which symptoms are clearly POTS and which aren't as typical of this disorder. I've either run into neurologists who just don't really have a clue what is going on with my symptoms and aren't very knowledgable about ans disorders, or docts who are POTS specialists and either clump all the symptoms into that diagnosis because the disorder can be so varied, or are able to tell me what symptoms aren't indicative of POTS but also don't have a clue of what could be causing the other symptoms because my tests were normal. Its a bit of a viscous cyle.

Hey futurehope can you explain in a bit more detail, if you don't mind, what your chest pressure would feel like? as well as what sort of duration/ onset? if it was everyday or just on occasion. Also did your chest pressure ever migrate either to your arm, shoulder, or middle abdomen or anything like that? thanks.

I'm with everybody else, I think clarification on if you do or don't have a tumor should probably be the first priority and then it will be easier to figure out what is what after that. But yes I do knww the feeling of doctors not knowing what to do with you, I'm currently having that issue with 3 neurologists telling me they don't think they would be able to help me, but you just have to keep trying until you find the right doctor who listens but also is willing to investigate, and is qualified to deal with your symptoms.

Hey guys just had a question to see where everyone else falls with this. I have very bad reactions to walking too far/ carrying heavy things/ any other real physical exertion. The only thing I can really do is yoga and some non weight leg exercises. I notice though that its not like I ever feel like the physical exertion that triggers my bad symptoms is phsycially difficult for me in any way, my bp and heartrate are always fine, I never feel tachycardic, I also never feel lightheaded or like I'm going to pass out. It really feels like my brain is the only place there is a problem; my initial symptoms is always this sort of darkening type feeling with my vision, not like tunnel vision but just feeling like everything is a bit cloudy, and feeling like bloodflow in my head gets weird like my brain feels like its underwater or something. The rest of my body always feels completely normal. Is this typical for anyone else?

I get this off and on, when its on it lasts for days-weeks, sometime changing in severity. Mine usually feels like pressure or tightness, and then when its starting to calm donw a bit turns into aching. My cc blocker seems to help, but if its really severe I also take a small aspirin and possibly xanax. I find doing some yoga and leg exercises helps it some but other than that its just resting and waiting until it starts to go away, still no answers for this yet.

Hey I was just wondering if anyone has had one of these and how they reacted to it? My cardio wants me to take this test because I can't actually do any exercise (I have a very terrible and long lasting brain response to anything physical), and this is the only way to get my heartrate up to where they can observe it. Anyone have any experiences?

yea i was going to say yours sounds like hemiplegic migraine as well

I am pretty much completely intolerant to exercise, I can do yoga with a few easy leg exercises in between stretches but that's about it. If I do anything even remotely physical I'm in bed for days with my brain feeling like its completely washed out and inflamed, vision and cognitive problems, and even laying down feels pretty crappy. My doctors don't feel that my excessive long reaction to physical exertion is a symptom of POTS, but they do see POTS as a triggering factor. Still trying to find answers. I think the hardest thing is one day of overdoing it forces me to basically start from zero all over again.

Hey Ebo, just out of interest, because i'm actually going back to my first neuro at Rush this week, what types of medication did you discuss? And what other specialized tests did they do? Cause like I said i have had alot of different blood work and mri's, eegs, to rule things out prior to seeing Barbio so maybe thats why no further testing was done, but I'm always interested in knowing what else is out there that might help my doctors figure out the cause of my symptoms.

gjenson, for me the cc blockers took a little while to really stop the chest pressure symptoms of mine. I think like after 2-3 days i could tell that it was helping those sympomts, but it wasn't until after a few weeks that the chest pressure was for the most part controlled. Now i still get breakthroughs of chest pressure from time to time, but most days its pretty controlled by the cc blockers.

He did my TTT, before I was a patient for him, but when I did see him he didnt suggest any medications, or other tests (though i've had all sorts of blood tests and mri's in the past), and couldn't really definatively tell me anything about my symptoms; like which symptoms fit for POTS, and which clearly arent (I have more than one neurological disorder). Though you shouldn't take this as a personal critique just about him, because for the most part all of the doctors i've seen seem to be at a loss for being able to figure out my symptoms, or definatively say ok these symptoms are not POTS, lets try and figure out what they are. So for me he wasn't helpful other than giving me a diagnosis of POTS, but neither were neurologists i've seen at mayo clinic, so i think it depends really on your symptoms and if you have more than one thing wrong with you and how well your symptoms fit into the norm for this disorder, mine tend to not.

Have you been to him? I saw him for one appointment, after my neurologist there diagnosed me with POTS, since he was there autonomic specialist, but he didn't really have any suggestions for me other than the basic drink water, intake salt, and don't overdue things.

Yea its kinda hard to explain them but when things are bad i get the sever mood swings, and sort of being thrown into a simialir type of state as when i'm getting a panic attack, not exactly the i feel like i'm dying feeling, but the werid sort of "my body feels off and I cant just feel all over the place" kind of a feeling. I always think of like the meters you have in your car for fuel, if on one extreme you have panic attack, and the other you have complete calm, when i get the symptoms your describing i feel like the meteres just jumping all over the place, or is foggy and hard to tell where it sits.

I'm on verapamil also, I'm on a 40mg dose, I've been on it for 6 months +. I tolerate it pretty well and don't notice a real change in bp or hr. Some days, and definately when I first started I would notice my hands and feet were freezing which felt like they weren't getting alot of bloodflow, but that happens pretty rarely now. And its the only thing that would help my chest tightness, so thats a huge plus for me, other than that I don't even notice I'm taking it. Also I could not tolerate beta blockers at all, like i was on 12.5mg (bascially 25mg cut in half), of atenolol and I just felt like I was more set back in a cloud all day, so I'm very sensative to different meds, but verapamil has been one of the few that has been positive for me, but everyone's different.

These things have happened to me before when I was sick, its like it just makes all my symptoms worse, especially with anxiety and feeling like things are all over the place mentally. Alot of weird mood swings, like from feeling normal to a panic state and back, as you feel better from the flu the symptoms should get better.

Yea i've never had the standing norepinephrine test, just a few TTT. Right after i get these episodes of what feels like a sudden influx of blood to my brain i realize that i usually stood up or bent down, or a combination of the two, too quickly for my body. And yes I have POTS, but dysautonomia is probalby a better fit because i have alot more symptoms than just orthostatic related issues, thanks for the replys.

yea, i notice if i stand up from sitting, and then bend down to the ground i can easily get that surge type feeling, really hate it because it seems to take a while to recover from

Hey everyone, I just wanted to see if anyone else gets this; I'll have times, usually when I'm just getting up to stand from stitting for a while, or grabing something off the ground, or if I stand up quickly to grab something near by and then sit back down, I get where it almost feels like there's too much blood to my head for a few seconds, and my head really does not like it becasue I feel weird afterwards. Like just now I was sitting at my computer and I got up to grab my phone off my dresser and I sat back down, and its ilke my bodys normal delayed response to getting blood to my brain surged up just as I was sitting down at a point where I no longer needed that blood and my brain just felt very full for a few seconds and then went down, but it almost feels like a bit of a shock for my brain, like I image my blood vessels having not enough blood and then constricting, and then getting this big surge of it once my heart kicks in, more than they were expecting. And just for informations sake my TTT, showed that instead of adjusting to changes is posture immediatly my heart waits and then jumps that +35 points, but I'm sure this is common for most of us.

I get this alot, the only thing that helps for me is time, and just make sure your eating and drinking alot so your brain recovers more quickly, but yes i get this to some degree each day, or really bad episodes triggered by caffiene, or any sort of physical activity.

I'd say 90% of my symptoms are only affecting my head or as i see it my brain: cognitive functioning issues, some form of visual perception problems either with sensitivity to light or just sensitivity to my vision in general, up and down or slow shiftying feelings in my head, just overall not feeling with it, even having points where its like my inner mind goes away, sensitivity to sound or activity, even weird like flare up type feelings in my head brought on by anxiety but its like a weird longer lasting physical reaction that goes along with it. Its pretty much just been seen as POTS symptoms, but it is hard to describe some of these symptoms to drs. who have never felt anything like it before. On my worst days, which usually are triggered by one event and then stick around for a week or two, my brain is just completely messed up, i'm actually suprised it recovers each time. On a scale from 1-10, 10 being the worst, my bad days i find myself at a 9, where i would see a 10 as either me loosing consciousenss, loosing a bodily function, having sever head pain, or dying, none of which have happened yet thankfully, but it still feels like death, and throughout my bad days i feel like i need to go to the hospital often, but i know it wouldn't help; laying down alot and just eating and drinking alot seem to help somewhat, but alot of it i just have to wait it out and after 7-14 days i start feeling more normal agian.

Hey Rachel, i also have lots of migraine issues that are more persistent outside of the typical headache with aura that i get from time to time. I'm on amitriptyline which is the only thing that stopped my headaches but things like sensativity to light, vertigo/ head dizziness, and sensory overload (with both sounds and vision) are more persistent from day to day. I will say that when i do get a full on migraine headache it usually takes me a week for my vision to calm down and mentally feel normal, i even feel really emotionally all over the place days after a headache, all of this i see as part of my headache "postdrome" (think thats what they call it). Alot of it with me I just have to go with the flow and over time things get better, regulating my sleep cycle is huge for me and eating stuff with magnesium which i think you mentioned. I can't do exercise now but that usually tends to help my body recover/ regulate itself. And if nitrates are not a known trigger to you i would look at that their basiclaly in any pork or ham type products, and sometimes in sausage, soups, italian beef, bacon, beets, idk alot of stuff that you wouldn't normally think. Basically just try and eat fresh food, nothing premade or prepared, it tends to lead to less headaches for me.

Hey everyone, so for the last two weeks i've pretty much had somewhat consistent chest pressure everyday. The first few days it felt like tighness in my chest like my heart was being squeezed and like my upper abdomen had a tight band around it, and also heaviness like someone was sitting on my chest. And i've had this issue pretty much everyday, though today its not as bad as it was originally, and it will also turn into what feels like sunburn under my skin over my whole abdomen, and sometimes it just feels like my chest and abdomen are just messed up and blaahh feeling, like my chest has a bad hangover. Anyways, i've had some of this in the past not usuallly lasting this long, sometimes its just random and stuff like anxiety and stress will make it worse, other times it seems to be triggered by sex. I also get a feeling like i have way too much adrenaline, like a few of the mornings during the first week my hands would feel a bit shakey, and it seems like my whole body is overactive like anxiety or worrying about things, or being in a room with alot of people and noise, just seems to make the pressure worse at times, so its been reall reactive to that, and also i get these periods where its like my body shivers but i'm not cold, i assume its some sorte of adrenaline or hormone or chemical response to something in my body. But i'm on a beta blocker but that doesnt seem to help, i've tried xanax a few days and thats ok, but doesnt seem to solve the problem. Also tried eating a bunch of beets last night because they are filled with nitrates which dilate blood vessels, that seemed to change the feeling but not exactly for the better. Anyways just wanted to see if anyone has had stuff like this, or if they found anything that has helped. It seems like its just one of those everlong episodes i just have to wait out, but since it feels like my heart its a bit disconcerning. Also have had ekg's all fine, holter monitor all fine but i think i'm going to make an appointment with my old cardiologist just to make sure.