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I typically have two different extremes with temperature, if it is cold outside I am often freezing especially my hands and feet, but when it is hot I can feel overheated quite easily. I just have to bundle up in the cold, and blast the ac when its hot out.

Hey Cleo I used to have acid reflux alot, what I found that helped it was drinking apple cider vinegar mixed with water; so like a teaspoon of apple cider vinegar in a glass of water. Medications for me only helped while I was on them, so it didn't really fix anything so I pretty much just changed my diet eating less stuff with tomatoes, not drinking gatorade too close to when I was going to bed, things like that.

Welcome to the forum, let us know if you have any questions.

Angelloz, do you know what ingrediant it is in those sports drinks that triggers migraines for you? I've been fine with gatorade but my brain doesn't seem to like other drinks with alot of potassium: certain vitamin water, coconut water.

I found that a lot of the time POTS tends to make me more thirsty, especially if it is hot or humid and I've been standing a lot I almost start craving water. That being said, I had to start drinking more water than I originally was just on my doctor's recomendation, he told me that first thing in the morning I should be drinking like 2-3 glasses of water because you loose a lot of hydration during your sleep. 2-3 glasses first thing in the morning feels like a lot when you drink it too.

Hi Tania78, have you thought of maybe trying to get into places like Mayo Clinic, Cleveland Clinic, or Jons Hopkins? What I personally liked about Mayo is that over the course of a week you can get done what would take 3-6 months going to other places, though their autonomic speciallist can take a while to get into. I've known a few friends/ family who have gone to their gasto doctors after having all the usual tests done and they have been able to help get them a diagnosis.

I take xanax if I have really bad chest pressure but combined with an extra verapamil, I typically try not to use it very much just because its not really great for you, but on those days where my symptoms are too out of control it is nice to have. It doesn't really effect my hr or bp very much. I think its effect on your symptoms will be different person to person, I don't take xanax enough to go through withdrawal, but have read of other members not realizing it worsened their symptoms until getting off it it, and other members still whos symptom's were more controlled by taking benzos. Overall its not exactly a good drug to be on long term, so maybe going over different medication options that might be able to help your specific symptoms might be something to discuss with your doctor.

Hey ks42 I too have had longstanding issues with insomnia, for me I have the type where it is difficult to fall asleep so it can take me anywhere from 30 minitues to 3 hours. I am on amatriptyline for my migraines but it is supposed to help with some peoples' sleep cycles. I didn't feel like it helped mine at all, but have now found that if I miss my nightly dose of amatriptyline I will not be able to fall asleep that night.

I find that I go through cycles of chest pain/ pressure on and off. Typically it could last hours or days in my case without really being triggered by any specific physical exertion or by standing, though I've had ekgs, tilt tables, treadmill test, and holter monitor tests and they all came out fine. It is still a particularly alarming symptom when it comes though, its really quite awful. For me though verapamil has been able to help this symptom and keep it in check.

Hey imapumpkin, I also have found I am particularly sensitive to strong food smells it tends to make my vision seem more light sensative so I always thought it was possibly something that affected my migraine brain, not sure if it is more related to migraines or POTS though.

Hey Lynnie22 I don't really have much to add to help with your current symptoms, but wanted to share this article I read a while back about this author Laura Hillenbrand (Unbroken, Seabiscuit) struggling through CFS and it mentions different ups and downs where she basically could barely even get out of bed during her relapses of CFS symptoms: http://www.kenwilber.com/Writings/PDF/A_Sudden_Illness.pdf

Chest pain, tightness, squeezing, Nausea waves, Sweaty hands and feet; These are all pretty common symptoms of POTS as well as digestive issues which tend to be a bit different for everyone, but obviously any symptoms that concerns you should be checked out, either with a autonomic specialist or cardiologist just to be safe. Some of these can also be symptoms of anxiety which many of us have as well. Do you notice you get your chest pain and nausea symptoms specific to certain activities (standing, walking around vs sitting or laying down)? Or specific enveronments; a hot day outside vs sitting in an air conditioned room?

Typically for me it will be a pressure type sensation like my chest is being squeezed or constricted, other times its like I feel a weight on my chest all day. It's not usually painful, but it can be very hard to deal with and sometimes I get a weird nausea that goes with it.

Yes, on the two tilt table tests I've had they have done the sweat test part, both times my sweat tests were normal, and the first time my breathing segment showed an abnormal response however on the second my breathing test was fine. On both tilt tables however I had the characteristic rise in heart rate of +35 points. Did your daughter's tilt table show a strong heartrate increase? Or was blood pressure affected in any abnormal way?

To give a different point view and hate to be that guy but, using smoking as a way of controlling/ helping POTS symptoms seems like a terrible long term idea. I know everyone has probably tried a handful of medications, and been to multiple doctors but in the long term smoking cuts out viable options to curb POTS symptoms; my POTS cardiologist was explaning to me some of his other POTS patients who are long term smokers who have no interest in stopping basically have no options because things like increased dialy salt intake or bp raising meds like midodrine are now dangerous from them. I think you also have to realize that despite its legallity and wide acceptance, tobacco/ nicotine addication is a serious drug addiction, only those of us who know what addiction feels like can really relate to it, those who haven't dont have the slightest clue of what they could be getting into. It's a bit wanting to use alcohol to help more POTS symptoms because it raises your blood pressure, yes thats true and for some they will feel better after a few drinks but it's in no way a sustainable treatment option, and will ultimately put you in a worse off place down the line.

Same, blurry vision, light sensativity, sometimes hazy vision like stuff doesn't look blurry but I feel like I'm stareing out of a fog or something.

So I've been able to adjust my dialy life so that I can try and work around my POTS as best I can; changing diet, salt loading, getting groceries on a different day I have to do laudry/ take out trash and this has helped me not overdue it, but I keep running into the predicament of what if you have to attend something like a wedding, brunch, birthday, or holiday celebration that takes place at a new location you've never been to where you don't know if it will require you to walk further than you can or push you too much physically? I don't like that I dread news of "hey were going to go to this play for easter etc." and being worried about okay how spread out is this place, how much walking will I have to do, how I can I work around my disability in a new situation or place?

Hey Paul, I'll give you my personal experience, as far as the tilt table test I found that I had more of a heart rate increase than I would if I tried to replicate a "poor mans tilt table" at home by laying down and then standing up. I think part of this is because they lay you down for a while where the only time I'd lay down flat throughout a day would be getting out of bed in the morning, and because your hooked up to an ekg they can see the increase as it happens while when you try and do this at home you might miss the highest increase just taking a pulse manually. - Do you associate bad days with high heart rate difference days? Not really for me, if I have a specific event throught a day where I'm having a lot of increases, lets say I sit down and stand up a lot of times in a row, or just more so on certain days it can take more of a toll, but then again I've had really bad days where I've spend most of the day in bed and still felt terrible. - How much variability do you get between different days ? It depends, when I was tracking it for my doctors it could be anywhere from 25-35 typically - What other diagnostic tests do they do apart from tilt test ? I think this depends on a case by case basis, but for me mri, eeg, blood tests, 24 hour urine analysis, 30 day holter monitor test, week long blood sugar tests, and treadmill test

If i'm on my computer to long or even spend a number of hours reading a book straight it tends to make my brainfog worse afterwards. Obviously eating and sleep on a normalized schedule should help a bit, i dont know I used to have really bad brainfog, that when it was at its worst I would constantly drop words and feel like finishing sentences was difficult because of it. For me amitriptyline helped my brainfog, no clue why and I'm sure it's not typical, but if your brainfog is constant and unchanging you could always see what your doctor recommends. I think a number of us will always deal with some amount of brainfog thats just better or worse depending on the day.

It's a good question, I would keep both and then you can always cancel the one that is scheduled later on if it looks like the first appointment goes well. In the past I had an appointment scheduled at mayo and I was going to have to wait 5 months to get in, so I just made appointments with local autonomic doctors in the mean time because I could get into them much earlier. Turned out that the local doctors didn't really have any treatment options that they felt would be a good fit for my condition so I ended up going to my mayo one later on anyway. You may find that one doctor is more helpful than the rest, I was able to get diagnosed definatively at Mayo, but am still looking for a doctor who I can follow up with and try medications with.

Hey Michele, like you I had a daily generalized malaise/ brain fog as a symptom typically it's at lower levels so I have just gotten used to it, but other days like this past weekend I just felt mentally tired all day as if I had gotten no sleep even though I had been sleeping fine. It could be quite bad at times where I don't feel like I should go out because it feels like I'm pushing against this tired, drowsey, out of it feeling, but I just try to keep eating, rest on the days it's really bad and try and take advantage during the days it is better. Not sure if its a dysautonomia symptom as I have other neurological disorders but I think we all get this at least from time to time.

Hey artluvr09 I wrote something similiar to that in my response above, but I get that too every once in a while I'll have a day where its like your just super irritable for no specific reason but it just stays with you throughout the day, its like you have to ride it out and try to not freak out on people in the mean time.

Had a colonoscopy as well, the anestesia wasn't bad, I was also really worried about how my body would react to it. I had to wait for the doctor for 45 minutes just laying in the operation room or whatever they call it, and my hr would not go below 110 just laying there I think because of the anxiety. But I just explained to my doctor and the anestesialogist about my POTS so they were pretty aware of watching vitals. Overall though everythign was fine, just groggy for the rest of the day but it wasn't so bad.

I get this as well in different forms; sometimes I can tell from the moment I wake up in the morning that I'm just going to be very irritable that day, so typically I try and give myself a little more space from people those days because I know it really has nothing to do with how I'm wanting to feel or anything that other people are doing that is making me feel that way, but there's other times where it seems like something triggers that sort of irritable feeling and it just kind of keeps going on its own and you can't really do anything to stop it you just have to let it pass. And being symptomatic can easily trigger irritability with me.

Hey Sir Digby, for myself I notice that all antibiodics seem to make things temporarily worse as far as my POTS symptoms go, and visually I'm much more sensative and sort of get that visual information overload type feeling with many antibiodics. Just being sick tends to make all my symptoms worse.