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I understand the feeling of "getting through" an activity rather than enjoying it, anxiety alone can make things intolerable. I would just make sure you are doing all the things you need to control your autonomic symptoms. I typically bring an extra verapamil if my hr/ chest pressure comes up a bit, I make sure I don't have to do a lot of walking so as to not set off my symptoms, I make sure to drink plenty of water during the meal even if I'm not particularly thirsty, and I usually bring a Xanax just in case but typically don't have to take it. I think having POTS just forces us to have to do some pre-planning for any family or group events, for me it's less about having to make sure the night goes perfectly, and more about setting myself up so that things can go well enough so that my autonomic symptoms don't control the night for me. Sometimes even taking a second car just in case I need to go home early and lie down makes me feel more comfortable.

I basically woke up one day with a bunch of symptoms following a migraine. Previously that year I had an increase in my migraine headache frequency and anxiety was worse for some reason. The first three to four months things basically just got continually worse with symptoms being added on and on. Four years later my autonomic symptoms got much worse following one specific head rush, no clue why.

Rich I don't have anything useful to add, but wanted to say thanks for sharing your story and please update us as your treatments continue. Hopin for the best!

Hey everybody I've been having some pressure/ discomfort/ just odd feelings in the back of my neck for a couple weeks. I believe I've gotten this on and off before but just wanted to see if anyone gets similair symptoms. Sometimes it feels like a dull aching, other times just like something's there in my neck (as a posed to not noticing a feeling again all), and other times like a faint pressure. Never pain or anything like that though.

I don't think you are alone in having a narcissistic parent, though I don't believe it has to do with your developing dysautonomia. That sort of upbringing could cause continual anxiety, doubt, fear which all may not play nicely with dysautonomia symptoms, but I wouldn't see it as the cause.

I've had chest pain that comes quickly and goes away, but more typically with me I will have chest tightness that can last hours to days. I'm on a calcium channel blocker which in my case has helped a lot, sometimes I will take an extra dose if my chest pain/ pressure gets bad. I notice the chest discomfort can sometimes become more regular once it gets started.

I as well had some difficulty with the dilation, everything was just really bright for a few hours even with sunglasses on, and vision felt a bit weird, but it wore off.

Yes this drug works in your brain. From reading the Wikipedia page, it is supposed to inhibit your sympathetic nervous system which works similair to clonodine, but also inhibits production of norepinephrine/ epinephrine so maybe that is what helps the hyperadreniergic side of your POTS. It looks like this drug has the opposite effect on dopamine transmitters in your brain than your ADD meds would, I'd obviously ask your doctors about this though

Alcohol also raises your blood pressure, I at one point found if I drank very moderately at night I would make up feeling more refreshed from sleep than I typically do, but it didn't last for very long. I'm assuming it had something to do with increased bp, maybe also because it is a depressant, not sure though.

Water and Gatorade, and don't feel bad about having to sit when your body is telling you it needs to.

Thanks dancer65, good luck on your TT!, It's never as bad you think it will be.

Hi Nova, welcome to the forum, glad to have you.

Hey Tyler, I've been to doctors in illinois as well as mayo, for autonomic specialists in illinois there is Dr. Janis Gilden she is an internal medicine doctor who has sees, and I believe has done studies with POTS patients. She was not able to help me but my symptoms were a bit more neurological. She is very thorough and on your first appointment with here it is basically a whole day of testing. http://www.healthgrades.com/physician/dr-janice-gilden-ylgcm There is also Dr. Barboi he is a neurologist, he did my first tilt table test indicating that I had POTS and has helped other members on this forum. http://www.northshore.org/newsroom/press-releases/alexandru-barboi-md-to-lead-the-new-autonomic-laboratory-/ There is also Rush, which has a decent neurology clinic.

Amitriptyline helped my brain fog, no clue why though.

Hey Mike, for me the sleep issues are always a bit of a battle, I found that typically it will take me anywhere from 30 minutes to 2 hours to fall asleep each night. This has been the norm for me for years. Things like overworrying or putting too much attention toward the fact that your not falling asleep quickly always seems to exacerbate it for me personally. The only thing that has helped my sleep cycle has been to start waking up earlier, so I used to wake up around 9:30 - 11:00 am, and now I have an alarm set for 8:00 am. I'm actually getting less sleep than before and I'm more tired the first half hour I wake up, but overall I sleep more soundly and feel better throughout the day oddly enough. If I'm sleeping more than 9 hours a day I actually feel worse. As for your GI issues, it might be good to try and see a gastroenterologist just to make sure there is nothing else going on with your weight loss; it is always good to rule things out.

Hey Mike, just wanted to chip in as well. Dysautonomia can cause a lot of the tired/ exhaustion, and brain fog symptoms. GI symptoms are aslo quite common, as is trouble exercising. I have personally found that my sleep cycle is a bit more tempermental, which can lead to even more cognitive issues during the day. And the way dysautonomia makes you feel phsyically and cognitively can be pretty scary at times. Do you have a doctor who specializes in CFS? From what I understand there can be flareups with that particular condition. It might be good to see a doctor, possibly a neurologist or specialist, who can help you to figure out which of your newer symptoms may be linked to your CFS, or to test if you also have an autonomic nervous system disorder as well. And a GI doctor may be able to help you find what is causing your digestion and weightloss troubles.

Yea I would bring all those up to your doctor, it actually helps when you list them out like this and then read it back to them so that you give them a thorough idea of your symptoms but also present them in a clear manner so they feel like they have too much information to focus on at once. I would just always make sure that your doctor knows the whole scope of your problems.

Hey jcad, just wanted to chime in as well, when my neurological and autonomic stuff started I had probably more symptoms than you but the ones we share include: fatigue (would come and go and was terrible on somedays), brainfrog (also could be terrible), not feeling refreshed from sleep (typically I will feel anywhere from tired to exhausted even with a full nights sleep), brain feeling inflamed, digestive issues (told i have ibs), panic/ anxiety episodes coming in during non-anxious situations, headrushes almost everytime i stand up, mood swings, overstimulated easily by too much light and sounds (grocery store lighting is the worst). I do not have lyme disease but was tested, as well as for autoimmune. Lyme can present with a lot of different nerological symptoms. I would probably consult with your lyme specialist to see which symptoms they would attribute to your lyme disease, and which may not fit. Since some of your symptoms do seem autonomic in nature (exercise intolerance, headrushes when standing, fatigue) you could always try and see an autonomic specialist or see if your current doctor would do a tilt table test to see if orthostatic intolerance is another issue for you.

I have a PFO which my doctors didn't seem to feel had much to do with my POTS, but kinda like what Katybug said, my migraine specialist said there seems to be some causal relationship with PFO's and migraine, however he also told me that he wouldn't recommend surgery and individuals who have had their PFO's fixed still tend to continue having migraines. I think its still early in those areas of study.

Like what katybug said, I am under the impression that there is no minimum hr level that must be reached, it is more about how much of a jump you get when you go from laying/ sitting to standing. In your case going over 50 hr increments, I believe that is consistent with POTS.

Hey jingles1987, I have not personally been put on ssri's but just thought I would add that when I started amitriptyline (tricylic antidepressent), to avoid some of the side effects since I'm so sensative to meds, instead of upping the dose every week or two weeks I took a whole month, and this for me help drastically with the side effects. I think for my system titrating doses really has to be done a lot slower than the average person, if might be worth asking your doctor about especially if you have a lot of side effects.

I actaully have never heard of dumping syndrome, but I was tested for delayed gastric emptying which showed negative on the nuclear egg type test, but positive from an endoscopy. Have you seen a gastroenterologist? If you haven't it might be a good start, as I know there is a number of tests they could run that might help diagnose your symptoms. Other things to look at might be doing a food diary to see if there are specific foods that always seem to trigger your symptoms (as you said carbs and sugars), then you can always try eliminating those things from your diet and see if it helps. From my experience gastroenterologists seems to like to know that sort of information anyways.

Hey leea190, that sounds pretty awful especially with the co-workers complaining. I guess a good thing would just be making sure your eating three decent meals a day, fluid loading, the vitamin C always seems to be good. Maybe drink tea during the day if you could handle the caffiene. I would also just talk to your doctor, maybe they would want to give you an antibiodic, as you said you've been sick quite often and maybe there is something else going on. POTS definately can make being sick even more misrable than it is.

I can't tolerate caffiene at all even decaf tea/ coffee has too much caffiene for me. It might be worth while to try decaf first because it still has some caffiene and then move over to regular tea if you tolerate it well.

Hey Jackiemxoxo, I do not have any personal experience with the medication you mentioned though I'm pretty sensative to all medications myself, so I would just say maybe give it a try, even take half a dose if that is ok with you doctor, so then you can at least see if it is something that might help you, and not have to worry as much about the side effects. I typically always do the lowest possible dose of any medication, sometimes even taking half of the lowest dose, and my doctor is pretty aware of my sensativities.