margiebee

I do have a couple other symptoms of CFS, namely the sleep issues and constantly swollen lymph nodes, but I've never been diagnosed with it. I am usually not super low energy at all (adrenaline surges abound), so I'm not sure if I quite fit the profile. I do remember the doctor writing something about accomidation down, probably the same thing. I have severe vision problems pertaining to glaucoma all throughout my family so I think that was her main concern, but I don't show any signs of that yet. Since there seems to be some overlap between CFS and dysautonomia, I wonder if its just all part of that web.

I get severe symptoms (dizzyness, tunnel vision, fainting) in situations where my ears "pop" such as driving on hills, elevators, swimming deep into a swimming pool, carnival rides etc. I know some of this could be related to rapid changes in elevation, but even driving on small hills where my ears just "pop" slightly it happens. I wonder if this is a similar concept?

My eyes do get dry frequently, which I chalk up to hypovolemia. I am pretty young so my eyes being in the state they are in isn't really normal at all, but my eye doctor seemed to really think it could be an autonomic nerve thing. I have heard some POTS meds can mess with vision as well, I think beta blockers might affect it? I could be remembering incorrectly.

That sounds like POTS definitely but you'll want to eliminate some other possibilities as well (I had tests related to my kidneys, adrenals, etc). I am so sorry about your situation though, I hope things start looking up for you.

I have almost the same exact blood pressure and heart rate generally. I currently am only taking clorazepate, a benzo drug, which lowers my heart rate and doesn't mess too much with my BP but I have to go off of it because of the risk of dependecy. Lethargic Smiles, I am going to my doctor soon and will start on some actual "POTS meds", and I think those two are actually the ones he had in mind. It is reassuring that they have worked for you, especially the midodrine because I have been somewhat skeptical of that one. Seems like it would make me a jittery mess

I had a routine eye doctor appointment recently, and as usual the doctor pointed out that my eyes have trouble refocusing, like when I look at something far away and then close up they don't refocus very quickly. I have had this problem since the onset of my symptoms and the doctor has always pointed it out, but now I explained dysautonomia to her and she said it sounds like it could be part of it. The problem is, I have bifocal glasses to try to help with this but it doesn't really do much because my eyes are still refocusing slowly no matter what. The eye doctor said that she wasn't sure what else she could do, but I was wondering if anyone else here had this issue and if you have found anything that can treat it. It becomes somewhat problematic in class when I have to look at a chalkboard across the room and then my notebook back and forth constantly.

Your story sounds very similar to mine, and we are also close in age, and I am also somewhat new to my diagnosis after almost 10 years of symptoms. I also have to monitor my fiber intake very closely, my doctor thinks that my previously diagnosed IBS is just part of dysautonomia. You will find that a lot of people on here can be very helpful with answering any questions you might have, and if you're like me you will certainly have a lot. Its amazing how many issues and symptoms many of us share. Also I think it is vital now to push for more testing to discover the cause of your dysautonomia, from what I've been finding out there are several possibilities. This is the stage I am at now.

I have Obsessive Compulsive Disorder that mainly manifests as skin picking and disruptive thoughts, but none of this has ever seemed at all related to my POTS symptoms. I suppose my symptoms may "appear" like a panic attack, but I actually do not get panic attacks. I get POTS flares. An observant doctor was very bothered by the fact that I kept saying that no psychological issue actually triggered these "panic attacks", which is how I got a referral to be tested for POTS after experiencing my symptoms for so long. I would be perfectly content just standing around and suddenly would feel like fainting and have a racing heart. I think more doctors need to realize a panic attack doesn't happen completely at random. It complicates things that I do have a diagnosed mental illness, but I think its just a random coincidence that I have both. That being said, stress does make me feel much worse, probably just because my body can't keep up due to the stress that is already put on it from being completely out of sync all the time.

I get chest pain from time to time and have been told it is a normal symptom of POTS by my doctor. He actually was surprised by how infrequently I experience it compared to other patients. Just keep in mind that if the tests were is normal it is likely just your POTS acting up, that helps me deal with it a lot! I mistakenly went to the ER once for my chest pain before my diagnosis, only thing they found was an elevated heart rate, big surprise and quite an expensive mistake on my part.

My brother has pretty obvious symptoms but hasn't been tested, my father had obvious symptoms as well but they went away as he got older (a glimmer of hope for me). I am the only living female in my family that has it but we think it is a gene from my father's side and I don't have any sisters. My grandma on that side also likely had POTS, so there seems to be a strong genetic aspect for me.

I've been treated for anxiety disorder, conversion disorder, psychosomatic illness, and all of that treatment did absolutely nothing for me. I would get to the point were they'd say "what's triggering your anxiety" and I'd have absolutely no answer because my symptoms are not provoked by a psychological trigger. That's actually one of the reasons why my doctors started looking into other things such as POTS. If that isn't proof enough I don't know what is. Not to mention my brother has POTS as well and he has no history of mental illness or deconditioning, he was a cross country runner until recently when he started getting more sick. I just don't know why the deconditioning issue is still being discussed, it seems to be the vast minority of cases and over-represented in literature like this.

At my house we vacuum daily in order to get all the allergens out for me. Luckily my mom is here to help out though, I don't know if I'd have the energy to keep up with that on my own. I also incorporate local honey into some foods that I make which seems to have helped over the long-term

Abbyw, trying gluten free also ramped up my symptoms, I think that I just have too sensitive of a system to make extreme dietary changes right now. I also get very wild swings in blood sugar if I don't eat regularly so that becomes a problem, I pretty much have to have access to food all the time. I carry around snacks with me everywhere.

I don't know what kind of POTS I have (I have some characteristics of hyper POTS), but I cannot tolerate caffeine at all. I think perhaps I am just extra sensitive to it, because even the amount in chocolate or decaf gives me a "buzz" similar to what a normal person would experience with a cup of coffee. Caffeine does increase my BP which is generally good as my BP is normally in the 85/50 range, but it makes my tachy go absolutely insane.

I felt pretty bad for several days after it has happened, sort of like a "hangover" effect. My heart rate goes down but I just feel very tired and sick after these episodes. But after several days I usually go back to normal.

Yes, this has happened to me probably three or four times. One of the times I was at my doctor's office and they also observed my BP spiking as well which it normally never does.

I'm similar to what other people have said, my system is honestly just too sensitive to make drastic restrictive changes like full-on veganism or paleo right now. I tried eating a clean vegan diet for about two months and I just lost a lot of weight and felt very low energy, along with gaining even worse digestive issues. Currently I try to eat whole-foods based vegan things when I can, but I supplement that with white meats for added protein. I eliminated all soda, high fructose corn syrup, caffeine, tomato sauces (huge trigger for me), processed packaged foods and fast food and it did improve my health slightly. I do salt load and always have by some kind of strange instinct, and I have to actually monitor my calorie intake so to not lose weight. I eat around 3000 calories a day to stay at a healthy weight, not sure if anyone here has this problem haha. Have been thinking about lowering my sugar intake but I am scared if I do I will drop too much weight.

I also have a diagnosis of both POTS and mental illness (obsessive compulsive disorder). I was originally diagnosed with OCD with panic disorder but my doctor and psychologist concluded that the panic disorder is not psychological at all and entirely POTS related. It is definitely difficult to distinguish, especially when mental illness can indeed have a profound impact on physical health. I also think that POTS is an extremely anxiety-inducing illness, with all the uncertainty and stress involved. I think its less about seperating the two out and more about just getting healthy, no matter what it takes. My current med for example, which I am currently tapering off of, helps with both my POTS and OCD. Unfortunately it is a benzodiazepine drug and not recommended for longtime daily use. Basically what I am getting at is, it is difficult to find a psychiatric drug that works with POTS in my experience. But I think that if you can it is vital to get your doctor and therapist/psychologist/psychiatrist to work together on this. You very well may have both issues happening simultaneously, and the meds for anxiety can be a disastrous combination with POTS. I find that it works best to limit medication as much as possible, my doctor often laughs at how often I turn down meds. But I am sensitive to all medications, and I find it much easier to find natural remedies for both issues that work for me (aromatherapy for anxiety, compression and salt loading for POTS, lifestyle changes and herbal remedies for both) and to chip away at what's left with low doses of medications. I too have difficult reactions to meds, whether real or imagined, and for me it is a trigger I try to basically avoid if possible. Don't let anyone discount your discomfort just because they think it isn't a "real" reaction, if you're uncomfortable you're uncomfortable.

I can't believe someone else has had the "waking up gasping" thing! I never remember or am aware of it when it happens but my boyfriend has informed me of several times when I have shot right up and been wheezing and gasping for breath, and described it as "terrifying". I take this more as a possible hyper episode than sleep apnea itself, but I suppose it could go either way. Only reason I suspect it to be POTS related rather than sleep apnea is I also wake up in the middle of the night sweating with an extremely high heart rate sometimes, and I lack other apnea related symptoms.

Carrie, the way you word it makes me wonder if its just another aspect of dysautonomia in some way, perhaps my adrenals just aren't being regulated properly as well. I have always been very sensitive to stress for as long as I remember, and that is probably my biggest trigger. I only experience syncope when I am stressed. So perhaps it is adrenal related but all under the dysautonomia umbrella? I do need to take care of myself more, but I am a college student so I have constant pressure to "keep moving" and in general I can manage it but I feel it is taking a toll, wearing my adrenals down pretty badly.

I have definitely been taking steps lately to de-stress as much as I can, I am curious as to what dietary changes you made? That is the part where the information seems to vary a bit.

I know this is likely somewhat of a touchy topic because there is mixed evidence about this condition, but I was just wondering anyone here's opinions and/or experience on Adrenal Fatigue? I am asking because I was recently looking through some of my blood tests I had done and I noticed that my cortisol was on the low-normal side, within the normal range but just barely. Nobody really explained to me why this could be, only that my doctor at the time was looking for Addison's disease and this disqualified that theory. I am also taking/coming off of a benzodiazepine which I know has been pinpointed by some to be a potential cause for this so called "adrenal fatigue". I have symptoms of Addison's which is why I was tested, which seem to be similar to the symptoms of this condition, without the darkened skin which I do not have. Has anyone on here ever looked into this phenomenon as I'll call it? Any believers or non-believers in it? Has anyone been treated for this? I am just curious about this being a potential (but somewhat controversial) cause to some of my issues.

Did you ever recognize having a tick bite or do you think you got it some other way? Reason I'm asking is the possibility of Lyme always sticks in my brain because when I was very young my parents took a tick off of my head, but it was not embedded in my skin or anything and it was not a "deer tick". Also that was quite a long time ago before I became very symptomatic but I do wonder about Lyme, although the testing would be too expensive for me currently I think

I was wondering about Pheo recently as well, I was wondering whether high blood pressure is one of those symptoms where everyone has it, because the articles were somewhat unclear. In other words, if I have some of the other symptoms (headache, pale skin, abdominal pain) is it worth looking into even if I have normal to low BP?

I experience this regularly and have been told that it is part of the lightheadedness I experience due to POTS. This has always been my primary symptom. When I experience it while laying in bed I usually try to drink a glass of water or two (I keep glasses of water next to my bed) and this usually helps enough to get me up and moving. Also, medications that have affected me poorly almost always cause this symptom, so if you have been taking any new meds that could possibly be the root cause. Even antibiotics that I can't tolerate cause me dizzyness and lightheadedness, even though it isn't even a listed side effect for them.