westernmass

Happened to me too.

Today makes it a full year since I went to the ER the first time. Almost two months later got the POTS diagnosis. What is funny in that pots-***** kind of way is that the day before I went to the ER I fainted for the first time, and yesterday I did the same thing

In many ways I feel better and stronger, and in other ways I feel worse or the same.

Cheers to everyone thank you all for postin and just existing- this board has helped me so much and in so many ways.

For me this is not pots related. But I've had chapped lips for years. I hoard chap sticks- all different kinds. My favorite is the original Burt's bees- the menthol does something great. If yours are super bad- have you tried aquaphor? Also, if yours are in any way related to cold sores (the coming and going, feeling inflamed, etc) you might look into taking the supplement l-lysine 1000mg/day for a while and see if it helps. Another thought- have you been tested for sjogrens?

I had the mirena. Was great- after the initial bleeding (on and off for a month or two) I didn't have a period for three years. I do feel like it lowered my sex drive, but I never had to worry about remembering a pill.

Woohoo I'm excited to see this! I just signed up to do warrior dash this summer. It's a 5k obstacle course. I've been going steady in my work out plan (prescribed) and hope to be able to complete this by June! I don't care if I have to crawl across the finish line.

I feel this way. I had mild but chronic diarrhea (sry tmi) for probably the past decade but never mentioned it to a dr. Anyway, since getting POTS my digestion has been terrible. Nausea bloating pain discomfort and kind of alternating between diarrhea and constipation- though not really because I pretty much always have a bm/day but they aren't complete....sorry to go into this much detail! I am finally seeing my dr about this in march.

Some things that help:

NO raw food (salad)..at least lightly steam

Take digestive enzymes w meals

Drink ginger tea with meals

Eat small meals

Exercise

Sorry, I can't offer any help but want to say thank you, this is a fantastic post. I wish we had something step-by-step like this for each of the many possible causes/factors of pots. My GP is great but also inexperienced and this sort of thing would be great to being him.

I want to add that I am NOT hyperpots. It is terrifying! I'm glad it's a sporadic- every month or two thing - and not a daily occurrence.

Finally have a f/u on Friday and its on my (long) list of things to talk with the doc about.

Will read everyone's posts in a bit, but YES this happens to me!! Every couple months this will happen a few times a week. Feels like a seizure almost but I'm mostly shaking/vibrating on the inside. Can sometimes correlate with tachycardia but other times not...

Thanks, Katybug. I'm looking for more of an understanding of what the pattern of those 4 being low might imply for my pots, rather than what each individually means...??

Hi all

I took a urine test to look at neurotransmitter levels via my alternative doc. The results came back with LOW levels of epinephrine, norepinephrine, PEA, and GABA. I am currently trailing supplements to raise those levels to normal, but am fundamentally confused as to what low levels of those four things implicates. I have a basic knowledge of the definition of each, but not what that pattern may mean for me and my pots??

Any help very appreciated!

Emma- the herbs vary week to week and are entirely based on my constitution and symptoms at the time. Chinese medicine is very different than western in that three people with say IBS would have three different TCM diagnoses... And POTS is even more complex You really need a qualified practioner to treat you. PM me if you want to talk more about it.

Imapumpkin- I'm so sorry for your situation and your pain. I know the feeling of thinking "well, I have every symptom on the 'how-to-know-you're-having-a-heartattack' list". When chest pain was my worst symptom I ended up in the ER three times before realizing either its not my heart, they won't do anything for the pain anyway, or really a combination of both of those. It seems like you've been able to pretty much rule out a physical heart issue though? So that's good news, even though its still scary and doesn't answer the question of what IS causing the pain...

Sending positive vibes your way...

Sounds like POTS... Or the broader term "dysautonomia" which includes lots of things, but for your case possibly orthostatic hypotension (bp drop w/ standing). There is tons of information on this site, so definitely explore and lots of wonderful people here to help. Best wishes!

Fwiw... This is the symptom for me that was once my WORST symptom, very debilitating and definitely scary! And acupuncture/herbs has almostade it disappear. I still get it, maybe even once a day, but soooo much milder than it used to be.

Many others have posted what else I would have said, but wanted to add this

This has become one of my main symptoms. Bloating, nausea all the time. It's uncomfortable and getting to the point I don't want to eat because of the discomfort, nausea and bloating.

I just ordered an abdominal binder, as a couple people mentioned itd helped them, so hopefully that helps. Anyone tried this?

Otherwise I'm waiting a few more weeks to see my primary for a follow up and hopefully deal with this issue.

Fussybug- imapumpkin and Jacquie have the correct name of the dr I was thinking of good luck!

Feel free to PM me for BI info.

i have heard from a few dinet members that Amy hoehler (sp) is very well regarded.

Hi

None of my doctors have mentioned hypovolemia, or evidence of hypovolemia, in relation to my POTS case. Would they have this evidence from routine blood work? How does one get tested for hypovolemia. I don't seem to pool at all in lower extremities, except possibly sometimes in the shower or extreme heat, and I have been questioning pooling in my abdomen as a cause of my GI symptoms, but I digress...

Anyway, my main question is this: if I am NOT hypovolemic, is there any point to drinking all the water and eating all the salt recommended? I know the importance of being hydrated on overall health, but drinking ALL the fluid they recommend for us is supposed to expand fluid in the body- would t that only be relevant for hypovolemia?

In addition to my primary care, I see an acupuncturist. The acupuncture itself helps me, as do the herbs she gives me.

My dr's were ADAMANT to me that over-exercising would be worse for me than under-exercising. I was started at 10 mins/day, recumbent bike, for 6 days, the one day off, then add 3 mins... So week two would be 13 mins...

I have hit a few blocks with this and listen to my body. For some reason 16 mins was killing me so I went back to 13 until it felt right. Now 25 mins is killing me so I've gone back a step. I can't do 6 days in a row, so I try every other.

The point is to slowly build strength and recondition, not get into the cycle of pushing too hard followed by relapse followed by pushing to hard again.

I found allergy testing (for food) to be helpful. Removing the allergens greatly helped with my GI issues. Although I will say a couple months later, I am having issues again so not sure what's up with that.

Sending you a pm...

Ditto to miss traci. I've had success with acupuncture, Chinese herbs, exercise, fluids and diet.

Would food allergies be a cause or symptom of pots? I've developed food allergies since getting pots. But haven't considered they could be causing pots??

YES.

I was on the mirena iud, not having a period at all- and felt bad most of the time. I went off of it a few months ago, thinking I've tested just about all I can think of, so may as well take it out and see how my body responds.

I am cycling with symptoms- a few days before, the week of and a few days after-- BAD BAD Terrible!

The other week or two- I feel substantially better and have more "good" days than before. Not sure what it means.