Please Help Me With My Pots Mystery

[mvdula]

I have always thought that I had a little different version of POTS than it seems many of you have...maybe not, please chime in! I never really have had a problem with standing....just with exertion. Well, after a party the other night, my standing stamina was confirmed when I saw the time when I left the party. I was there for 3.5 hours and don't think I sat down once. I did move around a bit, but mainly was standing still and talking to people. I felt fine, good in fact. I also do not have dizziness. My problems are with exertion (the threshold moves depending on hormones, etc, but it is always pretty low), bending over, doing much with arms above my head, heat, and sometimes no provocation (problems typically occur late morning). The consequences are not nice - awful spells (sometimes delayed, usually 1+ hrs long) of weakness, feeling hot, chest 'intensity' for lack of a better word, racy heart, feeling wired, bp 80/120 (high for me, but I know it's not high), maybe sudden bm urge which often leads to sweating, they are very scary, can't lie down bc I am so racy & wired, trying hard not to panic - I am better at this part now. Oh, and I usually have to pee afterwards. They leave me depressed and crying. Thoughts? Oh, and I'm the one who thinks my POTS was caused by ablation (for SVT); but I am open to hearing any helpful theories. My TTT was positive, Dx by Grubb though he did not supervise the test, he reviewed results and Dx'd me. My hr did go up enough and pretty much stayed up. My bp jumped around and was mainly up not down, though not dangerously. I was very anxious during test, which I think affected results slightly....but never felt dizzy.

[lieze]

Whatever it is that I'm dealing with is similar to your case.

It's interesting. I just had a bad episode yesterday and started searching online regarding adrenaline surges and found a whole group of women in perimenopause that are telling similar stories. My episodes are usually brought on by exertion also and I don't know if once they start then I go into a state of panic. I can tell you that my emotional/psychological outlook at the time gets totally rocked. I lose my bearing and fear the worse and then I start to imagine my life is over and I'm incapable of any activity at all. I think this is false and I need to learn to work through it or around it.

[juliegee]

No wisdom here. I just wanted to add that perimenopause was the WORST time for me- ever, symptoms-wise. I am only 48 now (early onset of menopause via a fibroid embolization) and I feel better than I have ever felt. I guess I'm delaying menopause by using a bio-identical patch with estrogen and progestrone (always together.) I feel so good for the first tine in years. I surmise that our hormones do a "death dance" before dying altogether and the result is CHAOS. Perimenopause certainly exacerbates things.

[lieze]

Wow Julie what a good explanation.

I was getting a similar feeling-that it is a transition and it is the end of one life or part of our lives and the beginning of another-I wish that transition could be a little easier.

[mvdula]

Unfortunately, I can't attribute anything to menopause. My POTS started around 33 yrs old....and I'm very regular. My cycles do affect the POTS though. I need to find the reason for my episodes......knowing it's "just POTS" isn't cutting it any more for me. I just can't imagine living the rest of my life with this fear and episodes.

[lieze]

Whether the POTS affected my cycle or vice versa there seemed to be a connection. As soon as my symptoms started in I started doing the nocturnal heart racing, waking up in a sweat and simultaeously my periods started coming every 3 weeks. At that point that was my first suspicion that I had a rude case of menopause. I started noticing variations right after I had my last child at 39 during that year after I started doing all weird types of spotting and feeling really strange at the same time.

It could be that menopause or perimenopause which is what I think I am in because I still have regular periods also brings on POTS in some people-I don't know. All I know is that I'm reading very similar stories from people that can get no answer from doctors and are dealing with the same symptoms. All of their lab work comes back normal. So ???? Yeah it makes me wonder too and I feel the need to get some kind of handle on this.

I am going to try dealing with it a little differently when my episodes do happen and see if it makes any difference.

[mvdula]

I wish my episodes were connected to menopause, because then I would have a reasonable expectation for improvement. I need to figure out the real root cause for me. My current theory is ablation....see my posts and poll on that. However, my episodes feel like weird endocrine events....so I still wonder about things like MCAD, etc because of the similarities and episodic nature.

[juliegee]

Unfortunately, I can't attribute anything to menopause. My POTS started around 33 yrs old....and I'm very regular. My cycles do affect the POTS though. I need to find the reason for my episodes......knowing it's "just POTS" isn't cutting it any more for me. I just can't imagine living the rest of my life with this fear and episodes.

Maggie,

The one thing I have learned is that dysautonomia is never stable- always changing. Could you be improving, maintaining your HR better with standing??? Perhaps more improvements are to come

I have slowly challenged myself to do things that were once impossible for me: a squat thrust is an example. Talk about postural changes . I practically passed out the first time I tried and still often get that feeling. But with time and patience, I can do several in a row now. I have found that I can train myself to overcome the once impossible with perseverance. Perhaps that's how you got to a better place with standing? Just a thought.

Happy that perimenopause hasn't reared it's head yet. Girl, watch out when it does I'm just saying.....

Julie

[lieze]

That's the same feeling I would get with mine and last year when this was happening I imagined I would just get worse and worse but I didn't. I got better and they practically went away. But yesterday it was bad and I got those same feelings that it was going to continue and not stop.

[dianne.fraser]

Maggie

Our triggers vary, but there is a cross-section of us with illness that is aggravated by exertion (including me). I feel fine DURING any kind of exertion; its afterwards that I'm in trouble - I get more severe symptoms following exertion; progressively more severe symptoms with persistent exertion. I'm not able to manage my illness at all without a lot of rest, and without avoiding physical exertion where I can.

I was always fatigued, but didn't start collapsing after exercise until my mid-30's, when I had a big exacerbation of my illness and an extreme worsening of my symptoms that I never really recovered from. At the time, I thought I had developed a new illness, but later I was able to track my fatigue back through the decades, linking a worsening of my fatigue to persistent exercise at various times through my life back to when I was a teenager.

Apparently one of my cousins had the same problem, but she worked it out in her mid-20's - her doctor couldn't work out why a healthy young woman would have increasing debilitation with persistent exercise, so he (surprisingly) told her to stop. She did. Go figure. BUT, her illness did not progress as mine did, and she's had a reasonably normal life. If I could go back to my teenaged years and stop all exercise then, I'd do it. Instantly.

There are metabolic diseases that are characterised by exercise intolerance, and that are treated in part by the avoidance of physical activity. Some of these conditions cause physiological damage if left unchecked, including damage that presents as dysautonomia. I'm scheduled to see a metabolic specialist in December, and I'm hoping that she'll consider whether my illness might be underpinned by one of those conditions.

Your ablation might have caused your illness, or it may have aggravated an existing illness - I guess if you had never lived with fatigue before the ablation, and your response to exercise had been normal previously, you have good reason to suspect the procedure as a root cause.

Just in case its relevant to you, I'll let you know how I go in December with the metabolic specialist.

With best wishes

Dianne

[sue1234]

Dianne,

Could you list a few metabolic illnesses that you are thinking of? Curious what road you go down looking into metabolic reasons.

[yogini]

I can stand and even walk for long periods of time too. I won't say that i feel "normal" - I am more wiped than the average person. But I can do it. What triggers my POTS is cardio exercise, stress or my menstrual cycle. We are all so different from one another. Have you measured your HR and BP to see what they do when you are walking? How long have you had POTS? I have learned to let go of the fear over time - I took a long time, though!

[mvdula]

Dianne,

Yes, I was healthy- no problem with exercise, or anything all my life. UNTIL - early 30s SVT and PVCs, then ablation, and within 2 years POTS. So, something changed drastically - and all I can think of is ablation. Could have been many things though; I second Sue's question - what metabolic illnesses? The exertion problem is by far my main and worst problem.

I have never had a problem with standing or dizziness - there was no improvement or decline - it was just never a symptom for me....which confuses me when I read the POTS board.

[mvdula]

Hi Yogini,

My POTS was DX in Feb 08 - and symptoms started about 6 months (arguably sooner)before that......about 1.5-2 yrs after my ablation. Yes, for me most any exertion, extreme emotional stress, hormonal changes and sometimes nothing (but I suspect at these times it is a blood sugar type issue even tho it does not feel like typical low blood sugar) will cause my episodes - sometimes now I know the vague warning/feeling of an oncoming episode and realize that I need to stop plunging the toilet (or whatever minor exercise I am trying to get done). I have a lot of fear about my episodes....can't get over it. I don't panic with them anymore though - so I am able to distinguish panic symptoms from real episodes - tho they can overlap.

[juliegee]

I have never had a problem with standing or dizziness - there was no improvement or decline - it was just never a symptom for me....which confuses me when I read the POTS board.

...Yet, your TTT indicated POTS (at least a 30 point rise in HR). Either the tachy doesn't bother you....or you might be improving a little bit. I get that a party is a lot easier (and more fun!) than a TTT. You can certainly fidget more which helps with symptoms.

I was running around the house one day, feeling fine, and (because my cuff was new) I checked my BP/HR. My HR was 120 and I felt fine. I didn't feel the least bit uncomfortable. That might be what you experience too.

I hear that exertion is the bigger problem. The fact that it all changed mid-life points more towards an autonomic dysfunction than mitochondrial disorder. From what I understand, those are present since birth.

What precipitated your SVT or PVC's? Any trauma- accident, child birth, surgery that you can recall?

BTW, I have episodes like you describe that feel hormonal/low blood sugary....

[mvdula]

MacksMom-

You totally get what I am saying. Nothing really precipitated my SVT - I had had 3 children, but with no complications and my youngest at the time was about 3 or so....and no illnesses that I can remember. Yes, it seems to me that anything like mito would have been a problem earlier on. The mid-life onset does point away from that. The exertion is def my main trigger, and the late-morning weird hunger/blood sugar thing is pretty frequent for me - think I need to eat something small at that point to head off anything. My episodes just feel so endocrine - like something is way off - all I can say is it just feels wrong, like I am so weak and about to collapse, but I never do - and walking/alternated with sitting seems to help.....thanks for your input

[juliegee]

As an experiment, I started checking my blood glucose when I felt like that and it WAS extremely low. (I bought a really cheap Wal-Mart brand meter to investigate.) As a result, I started eating very differently- No processed food, no sugar, no white food, no fruit even- high protein and only complex carbs (like whole wheat or veg) and it really helped. Maybe start checking your blood sugar during an episode. MANY with dysautonomia have reactive hypoglycemia.

Surprisingly, what also helped, was losing about 15 lbs. I was within a healthy weight by BMI standards, but heavy for me. It's almost like that fat was metabolically changing my whole endocrine make-up. When I lost the weight, those surges stopped becoming as frequent and (when they occurred) became more bearable.

Just a few ideas. Hope you feel better.

Hugs-

Julie

[mvdula]

Thanks...I could stand to eat healthier - and space my meals better. However, I have always had very low BMI (just genetic, not on purpose) - used to weigh in the 90's (I am 5'1") - I am now about 105. My remission period - last year coincided with putting on that little bit of weight (not from eating well tho) - so I thought they were connected - but no such luck - kept the weight and the remission ended. Unfortunately, this pregnancy has really, really lowered my threshold even more for bending over and exertion. What's weird is that I almost feel like the bending causes too much blood to be in my chest & my heart can't deal.....weird, I know - but that's how it feels.

[lieze]

I am about the same size that you are mvdula.

I only weigh about 100 pounds.

I've found myself obsessing on that today and thinking I am wasting away to nothing.

I drink boost and it really helps me.

I try to keep it on hand.

It's instant nourishment no need to digest??? Well I'm sure I digest to some extent but since it's a liquid it can get right into my system without much work.

I guess my concern is how do we get everything done?

The housework never seems done and the few things I do seem like a lot to me but it's never enough.

[dianne.fraser]

I've only searched for metabolic disorders characterised by exercise AND carb intolerance (my main problems, and problems I can trace back to way before I was diagnosed with dysautonomia). I haven't done an exhaustive search - I only wanted to know that a visit to a metabolic specialist was justified. Glycogen storage disorder Type 7 (PFKM) is a pretty good fit, though it is so rare its very unlikely. Type 5 is characterised just by exercise intolerance, and it might be a better fit for my cousin. Apparently it can also be characterised by excessive muscle development and muscle cramps (more like my father).

I also have a strong family history of diabetes - poorly controlled diabetes can result in dysautonomia. I'm not diabetic or pre-diabetic, but I've been restricting my carbs over many years in order to manage my fatigue. In a recent carb challenge (I was being checked for reactive hypoglycaemia), I didn't have the big fluctuations in my blood sugar that are associated with diabetes, but I woke each morning with blood sugar that was higher than the day before. On the morning of day 4, my doctor stopped the challenge when I woke with blood sugar that was not a disaster, but too high (7.6 or 140). This reaction was consistent with my last glucose tolerance test - the results were normal, but I went downhill for many hours after the test, and I was very sick for days afterwards.

At the very least, there is some kind of metabolic problem with my carbs that needs consideration. Perhaps my carb and exercise intolerance are linked; perhaps not. Its at least worth a look, particularly as there seems to be a new generation of teenagers in my family with similar symptoms. They might be ok - just a phase they're going through that they'll grow out of - but if there is any chance that there is something they could be screened for, THAT would be preferable to waiting to see whether their function deteriorates.

With best wishes

Dianne

[sue1234]

Well, your reaction with exercise and blood sugar HALF sound like an insulinoma, but the rest of your symptoms don't. Especially since this problem runs in the family. Can I ask--you said after your glucose tolerance test, you went "downhill" from there for many hours afterwards. Did you actually get a documented low?

It seems that many, MANY of us have reactive hypoglycemia, or at least some kind of problem with carbs. I know people with pre-diabetes and type 2 diabetes don't ever talk about being lightheaded with standing and such, so I think our carb issues are unique to our POTS. We just need to find that cause/effect connection!

I will have a blood sugar drop every morning around 11:30 if I don't eat lunch by then-guaranteed! It doesn't matter if I ate eggs only for breakfast, I will drop. Of course, anything carby for breakfast will make it worse and happen faster. I just eat every two hours until supper, and then I'm fine for the night. Weird.

[mvdula]

Sue1234 - I wonder if I have an actual drop at that time of day too. Most days (depends when I got up, etc), I start to feel hungry/odd around 11am or so - if I don't eat sooner rather than later, I will feel weak and not right. The part that confuses me about this is: I have had 2 instances in my life that I KNOW I had very low blood sugar-- the shaking, sweating, major hunger - got food asap and fixed it. In these frequent morning episodes, I never get to that point even if I don't eat for a while - but I do feel weakish/odd/hungry-but stomach feels past hunger and can't think of anything I want to eat. Eating also does not (always?) seem to fix the feeling, at least not right away. Wonder if I do have low blood sugar (reactive)- just not as low as those nasty crisis-like incidents. I really need to eat 2 small lunches I think - one about 11am and one about 1:30/2pm. After a certain hour, I don't seem to have the episodes - it is almost always a late morning thing for me - is this common with dysautonomia??

[lissy]

Thanks...I could stand to eat healthier - and space my meals better. However, I have always had very low BMI (just genetic, not on purpose) - used to weigh in the 90's (I am 5'1") - I am now about 105. My remission period - last year coincided with putting on that little bit of weight (not from eating well tho) - so I thought they were connected - but no such luck - kept the weight and the remission ended. Unfortunately, this pregnancy has really, really lowered my threshold even more for bending over and exertion. What's weird is that I almost feel like the bending causes too much blood to be in my chest & my heart can't deal.....weird, I know - but that's how it feels.

Sorry to cut in are you pregnant? I had hypoglycemia while pregnant and I also felt somewhat better at certain points during pregnancy...Also I had something called postpartum cardiomyopathy which I think had something to do with my dysautomnomia getting worse, I'm unsure but just thought I'd add that information.

Lissy

[mvdula]

Yes, I am currently pregnant. I think I had POTS (or was beginning to develop it) during my last pregnancy (but not because of it). It does change things a lot, and has lowered my threshold for a lot of things. One of my major hypoglycemic episodes was when I was pregnant - but did not have dysautonomia at all yet.

[dianne.fraser]

Sue

I took my blood sugar hourly from waking during my three-day carb challenge, and it remained stable - no sign of high or low blood sugar in response to food (including high carb and high GI food). I went 'downhill' in response to big carb meals and my GTT in that I felt progressively more fatigued, generally unwell and struggling to stay awake.

I didn't have any endocrine testing in the 24 hours after my GTT, so it isn't clear what was happening, but I had a very similar response to a delicious bowl of spaghetti during the carb challenge.

I had expected that my rapidly increasing fatigue after carbs would correspond to some kind of change in my blood sugar, but it didn't. My fasting insulin levels have also tested normal over the past five years - its not hyper-insulinaemia or pre-diabetes.

I had actually hoped that the carb challenge would show reactive hypoglycaemia, because this is something that others in my family could be screened for, and something that even teenagers can learn to manage.... I'm hoping that the metabolic specialist will be able to shed some light on it.

Dianne