Elfie

And the word-finding issue/expressing myself as well.

I started stuttering and slurring my words post-POTs and went from being very coordinated to being skitish about things that require balance and often smacking into doorways and corners.

I often have this issue. When I am symptomatic I often have people treat me like I am a special needs individual (I had a cashier pat me on my head like a child once) or like I am drunk or on drugs.

Stress has a huge impact on my health. I can get through short periods of high stress on pure adrenaline (with increase tachy and symptoms during stress, but still functioning) but will crash afterwards. Longer term periods of high stress completely wipe me out and wear me down until I just can't do it anymore. It can take months and months to recover from those. And I am one of those people that coped very well with stress prior to pots and didn't let things "get to me".

I have issues with the environmental stuff, even though I don't really have allergies. We have a wood burning stove, dogs, and a gravel driveway and yard -- so our house gets dirty quick. We have also have had issues with mold that are ongoing. Obviously we have ongoing air quality issues that only get worse when cleaning and stirring things up. Getting the stuff stirred up gets me sneezing and anything that gets into my body post-POTS gets attacked and then the swelling leads to infections. Also, I find scrubbing (any position other than flat) and exerting myself while standing (vaccumning) really kills me on the heart rate/bp/weakness. I also get rebound symptoms and symptoms from exposure to strong chemicals like cleaning products. Never had an issue pre-POTS.

Vetch . . . who da thunk?

Hey guys--

I just wanted to share an experience I had recently and maybe someone with more specific knowledge can help me explain it.

We have natural mineral hotsprings that the locals flock to in the winter. Since getting POTS I have avoided going . . . because, well, it seemed like common sense. However, one of the resorts has recently opened a section of pools that are between 85 and 100 degrees. In the past I've found that getting a little sun during our long winters can help with cabin-fever and SAD-type symptoms.

So, the other day I took a friend (who drove, great guy!) and figured I might end up spending most of the day sitting on the rocks rather than in the water. I was surprised-- I did very well in the "bathwater" pools and even tried a hot one.

Of course, the hot water caused my heart rate to raise after a short dip. However, I noticed something kind of odd. Despite sitting with my legs down and standing in the hot pool, my legs remained lilly-white, almost bloodless. I do take midodrene (vasoconstrictor), but even the perfectly fit, healthy man I was with showed signs of minor blood pooling in his feet and legs in the hot pool.

I didn't have significant symptoms until I was in the locker room (not POTS friendly, esp. with all the mother's with children and other women who felt the need to "spread out" on all the seating).

I know there are forms of POTS where there isn't significant blood pooling (hyperadrenergic, right?), but I've never suspected I have any other symptoms for those types, despite not ever or rarely seeing evidence of blood pooling. I also found it was strange because I was very relaxed with no adrenaline-type symptoms during this time.

I usually feel good after a beer or two. Sometimes I am even more energetic and clear headed/ less dizzy than I was before I started drinking. I also sleep better with a little alcohol in my system, as I have pain issues (often chest pain) falling asleep, but I stay asleep fine.

However, every once in a while (esp. if my sympathetic nervous system is overacting) I will end up as a mess after one beer-- it seems like sometimes when my nerves are going crazy those adrenaline surges are the only thing keeping my bp up, and calming them down will leave me a mess.

Sorry Rich-- I know I took probably 7 months to get out of my flare. I have since had bad flares (one caused by having to move to a slightly higher altitude, viral triggers, stress triggers, ect.)

Thank you -- good to know that I am not alone. I will have to look into it to see if my docs can get tests run to see if I have a measurable problem.

Hey guys,

It seems like every time I catch a cold, get exposed to an allergen, get run down, ect. I end up with infections. I was exposed to mold about a week ago and have had mildly irritating symptoms like a bit of sinus pressure, sneezing, ect. since the exposure but my body was dealing. I had a rough weekend stress-wise, and my body seems to have quit fighting the crud that got into my system. Overnight I feel like I have a full-blown sinus and chest infection.

My immunity has gone way down since POTS and I have a hard time keeping healthy, and an even harder time avoiding chronic sinus, ear, and chest infections.

Since I haven't had a cold virus (with POTS I ALWAYS know when I've caught a virus as my POTS symptoms get horrible) and if the infection is bacterial it is secondary to the mold reaction, I probably have fungal sinitus. Not much can be done about that, so far as I know.

At the same time, I have autoimmune excema which also started at the same time as POTS and is something I'm currently treating.

So obviously my immune system exists, my body is just trying to kill itself instead of the germs.

Anyone with similar issues?

I understand how very difficult life with POTS can be and how it is difficult to want to do anything (and I am one of those people that before POTS enjoyed doing things like scrubbing the tub-- so it doesn't take much to motivate me when I'm feeling up to snuff-- absolutely not a naturally lazy person).

That said, sometimes you have to push yourself. I'm with Jangle--- unless pushing yourself is going to cause dangerous symptoms (like frequent faints) or is putting you into flares that mess you up with days, sometimes you absolutely have to do more than you feel like doing with POTS. For example, is there a reason you can't do your chores because of nausea? Does the activity make you vomit, for example? I go through periods of time with horrible nausea, but generally can keep myself from vomiting if I avoid eating in the A.M. Working through the nausea is unpleasant, but for me it isn't dangerous and doesn't make the nausea or other symptoms much worse. I can understand being unable to do certain highly mental tasks because of discomfort (it is distracting-- very hard to remember what you read or do math when feeling very crummy) but I'm able to do mindless things like chores (esp. ceartain chores that don't require standing or lifting or I can do while constantly moving around to utilize the muscle pump effect) even when I am having lots of symptoms as long as my bp and hr are somewhat stable and i'm not fainting. Is it possible to trade chores with siblings so you are only doing ones you can handle? Or maybe your parents could "make up" some chores for you to do that are manageable so the siblings feel like you at least have some responsibilites too. For example, maybe you could be in charge of brushing the dogs--- which, depending on the breeds and the manners of your animals, isn't too tiring and can be done on the floor. If you can sit, doing the dishes while sitting on a stool may be an option. Exercise can help, and at least your mom might think you are working towards something.

That said, it is very hard to make people understand what you are going through. My family doesn't "get it." I've had better luck explaining it to friends-- but then again, most of my friends are adults and have a greater amount of life experience than the average teen.

Statistics and catch phrases from studies can sometimes be helpful-- I have some geeky friends, and the numbers on hypoperfusion and studies that compare POTS functioning to ppl with COPD and other respiratory diseases and stage III and IV CHF really seem to have struck a cord with them.

I have several friends that have watched grandparents or parents struggle with COPD or other lung diseases, CHF, or cancer (or even other nuerological conditions and autoimmune diseases like MS and lupus). Having those statistics that compare quality of life to CHF and COPD and then additional studies that compare those conditions to whatever friends or family are familiar with can sometimes help them realize that POTS can make you seriously sick. Or at least you can point out symptoms you have in common. I have a new aquaintance that has CF and has had a lung transplant, and I am fairly sure he could relate very well to what I deal with.

Also, by the time you're in your 20s or 30s, there are more people that have dealt with stuff like chest infections and things that can cause SOB and chest pain. Having POTS is kinda like having a killer respiratory infection, and a migrane, while running an 4 minute mile. I've also had friends stand and hold their breath (somewhere safe with a soft floor) until they start to loose their vision or gray out and then have them try to function or do something that involves brain power (selecting the right package off a shelf, for example)-- which is a really good was to induce mild hypoxia.

I've also had other POTS patients compare it to waking up with the worst hangover of your life every day. I'm not sure this is as apt a description, but it might help if your parents ever went through a drinking stage in their youth.

That said-- I still have the parent that says "if you'd just get up and about you'd feel better."

I went to college near two military bases. It wasn't unheard of for the young guys to give themselves or their buddies a bag or two of saline as a hangover cure-- starting an IV is something they teach you in basic as part of combat medic training-- as is keeping an eye on vitals and for infiltrating IVs, ect.

sea bands?

Thanks Schorobi-- I'm going to talk to my doc again. He was originally concerned because I've had episodes he is convinced are CHF and kidney issues/scares-- it is something to reconsider since I'm almost a year out from those incidences.

I'm allergic to florinef and can't retain water to save my life--- it all hits my bladder within an hour of drinking and then I will be urinating sometimes 8-9 times an hour. Salt and electrolytes have no effect on this.

That is pretty much what happened to me--- except I was 19 at the time and inexperienced/pretty ill and my family members (whose insurance I was on) weren't nearly as good of advocates for me. Basically we got "approval" only to find out we weren't approved, called the insurance to straighten it out, got "approval"--- only to come home and find out that there had been a mix up and the insurance refused to pay for 90% of the testing. Three years later I am finally a couple hundred dollars from paying that bill off.

My experience with the Mayo was positve, I got a diagnosis! Unfortunately Mayo was not comfortable beginning to treat me until I had found a doctor familiar with POTS that could continue my care locally. Mayo AZ expressed that they were not comfortable continuing to serve as my "autonomic specialists" from AZ when I lived several states away or working with my PCP or another doctor on my insurance locally to manage my care (partially because there was no neurologist for several hundred miles and only a cardiology practice, which had not heard of the disorder). Unfortunately, at the time they were the closest source of doctors familiar with the disorder.

As far as I know the original poster no longer needs advice since this thread is over a year old.

That said, it is a generally good topic (not the potential man-bashing component-- but the spouse/partner/dating angle).

I think that married or otherwise "partnered" POTSies can definitely relate to the stress that POTS can cause both members of a couple.

I also think that these stories can remind single men and women not to settle for someone who is not truly looking to be in a healthy realtionship and willing to deal with all that it means to support someone with chronic illness. Those that are single or dating need to watch out for partners that prey on the lack of confidence and self-esteem that can come from chronic illness (esp. feeling like the "lesser" or a "burden" in a relationship). There are some people that are willing to take advantage of the chronically ill and it is important for everyone who is single or dating with an illness like POTS to remember that they are as worthy of love as anyone else and not to put up with a partner who is controling, selfish, or using you for (insert it here: attention, physical affection, money, a place to live, to feel better about themself, ect).

What I would like to know is if after "x" many treatments (of course "x" will differ from person to person) if IV saline loses it's effectiveness to "treat" symptoms? I've seen some remote mention of it, but can't understand how that would work-- especially if it is working because it increases hydration and blood volume-- I can't imagine your body getting used to higher (more normal) levels of hydration and blood volume and then returning to POTSy symptoms, of course things aren't always that simple. I know IV saline only lasts for "x" amount of days or hours for some people, but a limit on the number of times your body will tolerate it as a treatment seems weird.

Chest pressure like someone is sitting on your or inflating your chest cavity from the inside with a compressor?

I get both. No reason so far as I know. Just another uncomfortable sensation.

Happens to me--- the men in my life love it! I don't yell or scream-- it makes me sick! There is an upside . . .

Nobody can make that decision for you one way or another-- everyone has different tolerances for things and I know that there is a possiblity that you won't adjust to it like I did. It kind of sounds like you naturally being very calm cool and collected when it comes to emotions and being male may make the effects seem more prenounced. I just thought you should know that it is one of the side effects that can go away in a relatively short time (just like the crawly feeling it gives some people, that most docs encourage to try to stick it out because it often goes away on its own-- of course, full-blown anxieties and mood swings are more serious for your mental health than that weird sensation).

LMAO-- I have connections, but you would have to come to the States to use my padded cell!

I did have mood-related issues on midodrene--- at first I thought I was going crazy, but it did settle down for me within a week or two. I still occasionally will have episodes where I will cry easier or feel a bit more anxious than I would have in a sad/emotional or stressful situation than I would when I am off the midodrene -- but usually only if I am already stressed or am increasing the med (like last week for me- my doc had me practically double my dose-- I wrote a very whiney post here and had a borderline anxious/crying breakdown on someone before I realized why I was feeling "off"). Five days later and I am feeling back to normal and kicking butt with the bit of extra bp boost. Since I have very little or no anxiety off the medication, I can deal with the remaining pretty rare exaggeration of emotion (my initial reaction was pretty strong, similar to what you describe-- but now any occasional symptom is more like the exaggeration of emotions that women can get with hormonal mood swings-- I don't suffer from those much or at all anymore either, but it definitely isn't padded-room worthy). Of course, I am also one of those people that is pretty good at keeping myself calm, even during POTS adrenaline dump anxiety times. I'm allergic to florinef and didn't have improvement on it, so midodrene is one of the few things that has been able to give me partial relief from my dizziness, so I tolerate the additional fatigue, cold hands and feet, and rare "chick/spazz" moments.

I can deal with the bad physical symptoms for the most part, but feeling like a TBI patient after every time I stand is something that drives me insane.

I think it really depends on the person. I know some people just don't tolerate it or never adjust to it, but I had issue with mood-stuff when first trialing it, but that quickly wore off (within a week or week and a half). Unless meds are doing something on the dangerous side or making me suicidal, I try to keep on them for about a week because I've had several I thought I wasn't going to be able to tolerate that my body just needed to adjust to.

I'm sorry you had such a bad experience!