New Here, Would Like Advice

[Janey]

Hi All,

I'm new here, 25-yr old female dx with EDS hypermobility, secondary POTS, intestinal dysmotility and what my neurologist calls "generalised autonomic dysfunction." I'm at that point where I've just been diagnosed but have had symptoms for 3 years after catching a parasite infection which attacked my nervous system back in 2006. My symptoms have gradually been getting worse over the past 3 years and I seem to have constant nausea, stomach cramps, lightheadedness, dizziness, fatigue, subluxating ribs, chest pain, trouble swallowing, bladder infections, pain etc. I'm about to give up my job and be supported by my partner who is sympathetic up to a point, but doesn't completely understand autonomic problems. I'm hoping to start treatment (whatever that may be) in a few months time, and I'd just like to know whether any of you managed to get a decent quality of life after getting put on medication or given any sort of treatment? Can any of you reassure me that this point is the "lowest point?" At the moment my quality of life is quite poor: I spend most days lying down, can't eat very much, and symptoms are so random. One day I will feel completely normal and can eat a feast and the next day I can't stand, speak, swallow, digest etc.

The only medication that stops the nausea is compazine. Metoclopramide works about 40% of the time, domperidone has no affect, and Zofran makes my bowel go into reverse. I've heard that you can get a botox injection in the bowel and this helps symptoms. Has anyone had this?

I also read on quite a well known site that EDS (hypermobility) is degenerative. Part of me thinks this can't be true, and the thought of my bowel and POTS symptoms getting any worse in unbearable. Anyone know if this is true?

Thanks for reading.

[EarthMother]

Welcome to the forum. You will no doubt meet people who can give you much more medical information than I, on your diagnosis and treatment options.

From my own healing journey I can say that things DO improve. However, I can not say that I have ever reached my "lowest" because it seems each time I go into a POTS tailspin it does seem to be worse than the time before. That doesn't mean that things are always downhill for everyone. It seems rather that these autonomic illness are at the very least unpredictable. In one moment, everything can turn on a dime -- in either direction! Whether we are having a good day ... or a bad slump ... the phrase "This too shall pass" seems to accurately describe our lives.

Hang in there ... its bound to change again.

~EM

[pat57]

I don't have POTS, but I was disabled by orthostatic hypotension and neurocardiogenic syncope. I function at very high- above normal- levels. Thanks to Norpace and conditioning. I have always felt better going full tilt because it kept my BP up. Now the meds do that very well but being so very active

has made me fit aswell. I know this doesn't work for POTS people. But I wanted to chime in and say meds work great for me.

good luck

[ramakentesh]

One day I will feel completely normal and can eat a feast and the next day I can't stand, speak, swallow, digest etc.

its interesting that people with POTS - even with POTS secondary to EDS - report this commonly - waxing and waning.

The only other types of illnesses that wax and wane are autoinflammatory disorders - Rh. Arthritis, Ankylosing Spond, etc. And trust me when I say that no doctor can currently really explain the cause of these spontaneous fluctuations.

I mean in theory EDS would result in obvious and constant venous pooling in theory but the fluctuations and the sudden onset seems at odds with this theory. And also the finding of beta receptor hypersensitivity in EDS is strange.

Anyways - well I cant talk about EDS but I can say that for me POTS came on mildly for a while before for no apparent reason it came on super bad for about 10 months. Then it became managable - without any medication because I didnt even have a diagnosis at this stage.

It was prettymuch managable (other than at 11am for some reason most days) as long as I had a big breakfast and stuff and then I went overseas - came back and had a very bad relapse. Since then the only thing that has caused relapses is always overseas travel - im not sure if it is the flight or the weird microbes or the melatonin freakout but something does it every time.

Ive had three major operations, a death of a close family member and two major infections since Ive got POTS. None caused a relapse - so for me the only thing that seems to is just randomly it happens or I go on a work trip or a holiday overseas. The relapse can arrive as soon as I get off the airline too! So i can go from nearly fine to passing out and not able to stand. Pretty crazy.

My longwinded point: For me anyway, its a matter of bad relapses and otherwise longer periods of relatively low symptoms (5-40%) most of the time, sometimes as little or none, other times relapses

[shannon]

Janey,

I am so glad you found the forum. I remember what a relief it was for me to know that other people out there understood my symptoms. All of us are different, but in my case I have seen unbelievable improvement in my functioning. At the time of my diagnosis, I had pretty much lost all hope of ever feeling better .... my symptoms were very unpredictable. One day I could go to school, and the next I would be unable to get out of bed, would be out of breath, chest pain, vomiting, ears ringing, cold sweats, just totally miserable.

It has now been 7 years since I was first diagnosed, and while I still deal with POTS everyday in some capacity, I am definitely able to hold a full time job and function quite normally. In addition to my medications, I have to be very routined and scheduled with my sleep, eating, etc. If I don't drink juice in the morning, for instance, I will get sick. But the good news is that I bounce back much more quickly than I used to. On the average day, I feel pretty healthy. It took awhile to find the medication that worked, but hopefully your doctor will find one faster.

We're all here for you anytime. Feel free to message me anytime you feel like venting. This is not an easy thing to go through, but I am glad you are finding support.

Best of luck!

[janiedelite]

Hi Janey,

Yes, there is hope for a better quality of life... but there usually aren't any miracle cures. I'm not on any POTS meds right now, but I've gotten better quality of life from doing the usual POTS regimens. I take in 4 to 7 grams of sodium a day (depending on activity and heat), 3 to 6 liters of fluid a day, I wear thigh-high compression always and abdominal compression whenever I'm active, I have a cooling vest and try to stay in temps under 72F, I have a seat cane which allows me to go places and sit when needed, and I try to avoid stress whenever possible. I've tried florinef and midodrine but had problems with both. Next on my list is Mestinon, once we're done trying to get pregnant. However, I still cannot work because of my symptoms.

My POTS waxes and wanes somewhat, but using the above helps I can usually pull out of a slump within a few hours or days. Although in May I had a horrible 3-4 weeks for no reason at all...

Glad you found us,

Janie

[toddm1960]

Hi Janey,

Welcome to the forum, you're going to find great people and tons of information here. It was and still is a life saver for me, just to know there are others feeling the same things I have has made a huge difference. The only advise I have is to stay positive, it's never as bad as is seems and tomorrow can always be a better day.