Questions From Newly Diagnosed Pots

[heathmcev]

Hello!

I just have to start by saying how amazing this site is! It was one of the first things my doctors recommended and I am so thankful for all of your wisdom. I have learned so much and certainly don't feel as alone as I first did. Every time I log in and read, I sit here and go "me too!!!" over & over.

My 5-second summary: I'm a 33 y/o woman, diagnosed last month w/ POTS. I think I've probably had it since 2003, and have just been struggling since then to figure out why my body feels so out of whack. I also have the cold hands/feet, constant sweaty armpits (ugh), extreme fatigue, IBS, major sensitivity to meds, etc. I haven't been able to work much since 2005 - both due to a major depression diagnosis & what I now know to be POTS symptoms. Over the last month I've started salt (2g/day), liquids & compression socks. Am also on a micro-dose of Cymbalta.

Here's where I'd love your input & advice:

? How do i begin to find a PCP that knows what to do w/ POTS? Mine is just clueless & makes me feel like a hypochondriac.

??Electrolytes: a nutritionist has recommended I skip all the electrolyte drinks (she thinks they're largely marketing ploys) and take trace minerals. You buy it as a liquid and put into whatever you're drinking throughout the day. Has anyone tried this?

? Has anyone tried flower essences - like Bach's?

? Does it take you longer to get over being sick (even a little cold) than most?

? Are digestive issues common? How do you deal w/ them? I've had IBS since age 18 but have horrible side effects from the meds, so try to manage it on my own.

? Other than over-doing the activities, what are common triggers? Are there foods that are good to avoid w/ this regard?

? My sleep is always off kilter, which I read is common. 2 Simply Sleep & hot milk usually works, but are there natural methods that you all find helpful?

I truly appreciate any feedback!

Best,

Heather

[all4family]

Hi Heather,

I just want to say hi, and "me too"! I know what you mean about feeling so alone in this, and then finding all these people who understand what you are going through. I am fairly new here, and to being diagnosed with pots too. So I don't have a lot of advice as I am learning. But you are definatly not alone, and I am sure there will be some great advice coming your way real soon.

I also wanted to say I really share the sensitivities to medication with you. I have had the worst time with that.

Take care, and I look forward to seeing you here.

Hugs

Suzy

[flop]

Hi Heather,

Welcome to the DINET family - we are all on a learning curve here but there are usually people who have experienced similar issues so can share experiences with you.

PCP - good PCPs are hard to find, finding one who is familiar with POTS is likely to be very difficult. I know others have found it helpful to look for a PCP who is compassionate and willing to learn and then work through the POTS issues together. Often if you have a specialist that is willing to liaise with your PCP you can work things between the three of you.

Electrolytes - I personally avoid electrolyte/sports drinks as they often contain lots of sugar or artificial sweetners which I choose to avoid. I previously took slow sodium tablets but now I use Himalayan salt - it is a lovely pink colour as it contains all the natural trace elements. I put a pinch into each glass of water that I drink (not enough to make it taste salty just enough to soften the feel of the water on the palate).

Bach's flowers - when I was a school I used to use Bach's Rescue Remedy to calm my nerves before major exams. I haven't used any flower essences specifically for POTS symptoms though.

IBS / foods - I have horrid gut symptoms (fairly common with POTS). I have found that I am intolerant (not allergic) to gluten. Cutting gluten out of my diet has made a big difference - I hadn't realised how bloated I was, and I go to the bathroom much less frequently. If I have trouble with nausea I take fennel seeds (chew them) or a cup of fennel tea, other spices such as cardamom and cloves help too.

Sleep - I haven't cracked that one myself yet, hopefully someone else will chime in with some ideas.

Flop

[Rachel]

Hi Heather,

Welcome. Thanks for joining in!

I've tried all sorts of sleeping pills/ insomnia remedies. The best thing for me is melatonin, 3mg every night when I go to bed.

I have digestive issues also. I have gastroparesis, which I'm able to manage with diet changes as necessary. The biggest problem is my intestines. They don't really move on their own anymore. My stomch empties slowly, but at least it eventually empties. My intestines, however, are a different story! I don't have the IBS issues of constipation/diarrhea. For me it's a problem of my intestines not moving at a pace that is remotely close to normal. I take Amitiza 2xday to keep them moving. I also have to push fluids, replace meals with soup when necessary, and eat a lot of Pringles made with Olestra.

As for food triggers, it depends on each individual. For me, milk and ham are the worst foods. I never eat ham, and I am very strict about my milk intake. As you pay attention to your diet and symptoms, over time you will notice what foods are triggers for you.

Welcome to DINET. I hope you find the help, information, and support you need.

Rachel

[EarthMother]

Here's where I'd love your input & advice:

? How do i begin to find a PCP that knows what to do w/ POTS? Mine is just clueless & makes me feel like a hypochondriac.

Welcome Diz. I hope you find answers as well as support from this amazing group of POTS pioneers!

My PCP has never treated a POTS patient, but he is an excellent advocate. Believes me when I explain my symptoms, is willing to hear about what I have learned in my own research, and hooks me up with the best specialists in his medical group as need be. I think finding a PCP who listens and believes in you is the most important piece of the puzzle. I would recommend interviewing several.

??Electrolytes: a nutritionist has recommended I skip all the electrolyte drinks (she thinks they're largely marketing ploys) and take trace minerals. You buy it as a liquid and put into whatever you're drinking throughout the day. Has anyone tried this?

The trace mineral drops I have seen are a waste of time with inadequate amounts of non-essentails that do nothing for POTS. Most folks here who do the electrolyte drinks do so for hydration and volume of liquids as well as potassium/salt. But for me after a couple years on Gatorade I became ultra sensative to sugar (the stuff is loaded with it) ... so now I need to get by with water and salt.

? Has anyone tried flower essences - like Bach's?

I did a lot of Bach last year as I started to go into my most recent crash. I tried a variety like Rock Rose, Mimulus, Cherry something-or-other and Vervain (oh, wait the Vervain was for my DOG! LOL) And I can't say any of them worked any better or worse than Rescue Remedy. I rather think it is holding the brandy under my tongue that does it more than anything else!

? Does it take you longer to get over being sick (even a little cold) than most?

Hard to say ... I feel like crap so much of the time I'd be hard pressed to know when one "bug" stopped and another started. Though in general in my current state, I'd be inclined to say No. I don't think it takes me longer and I certainly don't seem to pick up all the bugs that my kids bring home from school like I did years ago.

? Are digestive issues common? How do you deal w/ them? I've had IBS since age 18 but have horrible side effects from the meds, so try to manage it on my own.

DIET. Diet continues to be an important part of my overall wellness strategy. I had IBS for 10 years starting in the mid 80's. Non-sollulable wheat fiber and aloe vera papaya juice for six months did more to curb that than any of the heavy duty meds I had tried back then. During the years I have treated food sensitivites through a rotation diet, systemic candida with strict diet changes, as well as a recent bout of reactive hypoglycemia which again required strict dietary adjustments. Good luck finding the right combination that helps you, and know that what you do find may need to be revisited and adjusted over time.

? Other than over-doing the activities, what are common triggers? Are there foods that are good to avoid w/ this regard?

Food is still a trigger for me and I need to be mindful at the moment of things like aged cheese, avacado as well as foods high in free glutamates. I also tend to flair after a full meal (post pranial hypotension I assume, or else my cardio mentioned something about potassium getting pushed out of the cells after eating -- whatever it is I do better on smaller meals throughout the day.)

Temperature is another trigger for me. I have a very narrow window of climate control that my body can handle at the moment.

? My sleep is always off kilter, which I read is common. 2 Simply Sleep & hot milk usually works, but are there natural methods that you all find helpful?

I do not have the same sleep issues that many here have on the boards. But I do wake frequently in the night. In order to adapt to this wake/sleep interrupted pattern, I make sure to go to sleep by 9 (10 at the latest). That way if I am up at 6 a.m. I have had sufficient down time. For me there is a short window of opportunity when my body can fall asleep...if I stay up too late my sleep is more fitful and I do not feel rested in the morning regardless of how many hours I "slept". Depak Chopra once said that the number of hours one gets before midnight are the most restorative in terms of healing. This seems to be the case for me.

Good luck on your own healing journey.

[iheartcats]

? How do i begin to find a PCP that knows what to do w/ POTS? Mine is just clueless & makes me feel like a hypochondriac.

---I have a good PCP who's interested in learning about POTS. It's something new and she's a truly caring doctor - you can tell she wants to help her patients. I think you just have to try a few to find one. That's what I had to do, if they don't work with you...or it's not a great relationship...go to a new one. It was hard the first couple of times, but then I decided it's my life and my choice and I have to do what's right for me.

? Electrolytes: a nutritionist has recommended I skip all the electrolyte drinks (she thinks they're largely marketing ploys) and take trace minerals. You buy it as a liquid and put into whatever you're drinking throughout the day. Has anyone tried this?

---No. I probably should. But G2 is easy to drink and my EP thinks it's ok.

? Has anyone tried flower essences - like Bach's?

---Nope.

? Does it take you longer to get over being sick (even a little cold) than most?

---Yes. And my symptoms are worse during an illness. A little cold I'd barely notice before is now prominent because of my POTS symptoms.

? Are digestive issues common? How do you deal w/ them? I've had IBS since age 18 but have horrible side effects from the meds, so try to manage it on my own.

---Mine were worse years before POTS. I'm lucky on this regard.

? Other than over-doing the activities, what are common triggers? Are there foods that are good to avoid w/ this regard?

---I can't pinpoint anything personally. Some people can't tolerate MSG.

? My sleep is always off kilter, which I read is common. 2 Simply Sleep & hot milk usually works, but are there natural methods that you all find helpful?

---I've always had sleep issues, even as a kid. With POTS they can be horrible. I can sleep well a few nights, then not a few nights, etc. I take Ambien on occasion. I don't love taking it...but a couple days of no sleep + having to work = horrid for POTS. I guess you just have to find something that works. When I work, I can't nap, so I have to sleep at night.

[heathmcev]

Thanks for your responses... i really appreciate everything you all said. I bought some tumeric & himalayan salt to start and am starting to figure out where MSG & gluten appear in foods so i can maybe try a restricted diet to rule some things out. It seems like a trial & error process, which I've gotten good at going on and off so many depression meds over the years! Patience, right! I'm also getting names of physicians to interview!!

Thanks! Be well,

Heather