joyagh

I don't know what kind of TTT they did. I wasn't on any meds. I was supine for 30 minutes and they did the breathing test and the electric shock tests. I didn't get any meds during the test. My HR went from 60-85 on tilt up, but I have constant PVC's also so it was hard to get an accurate reading. I have much more of an increased HR response when I stand on my own and use my own muscles and the skeletal muscle pump is activated. I have really tight calves, too so sometimes I wonder if my veins are too compressed in my muscles and can't pump blood. Also, I've never fainted in my life. When I tell Dr's that, they kind of pass me off. does every POTS patient faint?

******I was just going to start adding salt and even more water hoping to alleviate the hypovolemia, but the last thing I need is more adrenaline!

i would have chosen pregnancy, hypertension if there had been a choice. I started out with very low BP which skyrocketed after a flu when I developed POTS. My POTS caused gestational hypertension and pre-eclampsia, tingling head, face, torso, tachycardia, dypsnea with any movement, sudden extreme edema, etc...

yes, this is how I feel exactly! But I have great distension in my upper abdominal area just below the rib cage (even though I got super skinny after having my baby. 2 years later, my abdomin extended greatly and suddenly. when I used to get bloated, it would be my lower belly, so this is weird and different. This is from my ribs to my belly button. I feel the same way though - hypovolemia in the chest/thoracic area with dypsnea and tachy and a sense of compression/collapse/pressure in the chest area. no leg pooling, no leg edema, but I have to bend forward to stabilize and catch my breath. when I check my BP/HR while bent over, the BP is high, usually very high diastolic and narrow pulse pressure. this is an indication of hypovolemia and reduced stroke volume coming from the heart. when I stand back up the tachy comes back and dypsnea and compression/pressure. I remembered tonight, when I was dancing before I got POTS, in ballet class I used to have to bend over and rest my hands on my knees to catch my breath after combinations across the floor. maybe it's been lingering very subtly for years.

for those of you with Hyper-POTS, what were your TTT results? Mine were neg. (and inconclusive due to constant PVC's) as I only had a 25 bpm increase with tilt up, but when I do the stand test (using skeletal muscle pump) my bpm increases 33-39. I wonder if HyperPOTS doesn't respond the same way to TTT as classic POTS. Maybe the use of skeletal muscles triggers the hyperadrenergic mechanism causing the POTS symptoms, but while relaxed, they don't get triggered?

In fact, new researchers are saying that more than 27 bpm increase on a STAND TEST is more accurate, b/c it relies on the skeletal muscle pump, which the TTT does not. I am neg for POTS with the TTT (25 bpm increase) but with a stand test, I get a 33-39 bpm increase. I have ALL the symptoms of hyper POTS. I think TTT is diagnostic for classic POTS, but maybe not for hyperadrenergic POTS, as the physiological aspects at play are different.

I had infertility BEFORE I got POTS. I actually had a cancelled IVF (poor responder, only 3 follicles) converted to super-ovulated IUI. We got pregnant from that! and then I got POTS during pregnancy after a flu at 4 months. This was 4 years ago. I suffered a miscarriage just last week. Got pregnant at 42 naturally and unexpected! But I lost it at 5 weeks. I was taking lots of sudafed and goldenseal for a sinus cold/flu, which probably reduced blood flow to the uterus and caused contractions. I was also getting major adrenaline rushes. I know high cortisol levels are linked with higher rates of miscarriage. I also have endometriosis and a large ovarian endo tumor. I had uterine polyps which I had removed, but I also have fibroids. I'm getting that checked out this Friday. None of those issues prevents pregnancy but it can make pregnancy harder to achieve and maintain. If you can control the BP and HR and adrenaline surges, POTS has not been shown to decrease pregnancy outcomes, but I don't know about fertility or miscarriage. I think it increases miscarriage risks if un-managed.

yes, this is exactly me. I have been a ballet and modern dancer since I was 10. POTS developed during pregnancy after a flu for me (I was still teaching ballet and doing massage afterward the flu with lots of symptoms that got progressively worse but were all chalked up to pregnancy). I can manage daily pretty well now with mild symptoms with beta blockers. But mild-moderate exertion is my biggest problem. If I take a dance class, I'm wiped out for 3 days. the shattered glass and weak, shaky nerves is a right-on for a description. I did 2 massages in one day and was wasted for 3 days. I get super out of breath when my HR goes over 110, which happens with mild-mod exertion. I've always pushed myself physically - I worked on a trail crew in northern California - and have always done physical work besides dancing; massage, waitressing, etc. and lots of outdoor physical activity. not anymore.

I had that when I was pregnant. When I got IV fluids with potassium it helped a little bit. they never figured it out though. let us know if you can find a cause for it.

I've been taking 50-100 mg of benadryl and 6 mg of melatonin for 3 years to sleep (i'm 42). I recently found out benadryl is a dopamine blocker, hence it causes restless leg syndrome, which has been keeping me from sleeping anyway. I think a dopamine blocker would be a bad idea for POTSies - we need our dopamine transmitters working well. It looks like dextromethorphan (DXM) (cough suppressant) is better than benadryl, as it can ease POTS symptoms, and it's an NMDA antagonist so it's supposed to be calming too. It can be abused so it should be given with supervision. Also, there have been studies showing melatonin inhibits the peripheral venous blood return to the heart so it can also exacerbate POTS symptoms. I had to find a new sleep med regimen. Hyland's Calms Forte homeopathic tabs help me a bit. I also take l-theanine, GABA, 5HTP, (all natural supplements), and Klonopin if needed. I may try DXM instead of Klonopin though.

oh, I also take DHEA to inhibit cortisol production. I doesn't prevent adrenaline rushes completely, but I think it helps a bit.

unless you are actually scared and panicked, it's probably just an adrenaline rush due to the overactive adrenals. I'm about to get an endocrinology work up due to this issue. there can be underlying pathologies of the adrenals or pituitary that causes the adrenaline rushes. It's so common with hyper-pots though. Apparently, dextromethorphan can help, as can Klonopin and other benzo's. I also take Hyland's Calms Forte which is homeopathic and helps a lot with my tachy and adrenaline surges.

oh yah, you can take pills without any extra ingredients. you have to be careful with cold meds that they don't contain other ingredients for cold symptoms.

yes, I would imagine you'd have to be genetically predisposed to the NET dysfunction to be affected by the CRH from the placenta, but who knows! I just emailed Dr Grubb, so we'll see!

thanks for the address. I will ask him and let ya'll know if I hear a response!

I have found some info stating that using one therapeutic dose of DXM can relieve POTS symptoms for days. It's an NDMA antagonist. Has anyone used it for this purpose? I notice I feel better when I take it for cough - I don't get the adrenaline symptoms. I didn't know if was an opiod base. I never thought it could help for POTS symptoms, but I might try it. Maybe not at the 150mg dose, as that has some scary looking effects, but a regular dose in retrospect has helped me feel better, so maybe just the regular dose can be effective. http://bpainfreetherapy.hubpages.com/hub/How-to-Use-Dextromethorphan-for-Chronic-Pain

a lot of adrenal support complexes will have most of that stuff in them I also suggest DHEA, phosphatidylcholine (Seriphos) and acetylcholine. DHEA cuts down on cortisol production, Seriphos supports the ANS, and acetylcholine helps activate the parasympathetic NS. this would be for Hyper adrenergic POTS.

my EP sent me to an endocrinologist to rule out primary endo pathology. I think (hope) they will run all the hyper tests - epi, nor-epi, standing plasma and 24 hour urine levels. This should be enough to rule out adrenal tumors and DX hyper-POTS, I think. I'm not looking forward to stopping my meds to get accurate test results, though. Try to get an endocrinology referral.

I am on metoprolol, Zoloft and Klonopin if needed. BB's work well for me - 80% better with them. I also am taking DHEA to reduce cortisol production, and phosphatidyserine (Seriphos) for the ANS. I also take acetylcholine to help the synapses in the para-sympathetic NS. I'm wondering about a Nor-epi inhibitor.

I developed hyper-POTS 4 years ago at 4 months pregnant after having the flu. I am wondering if the corticotrophin-releasing hormones (CRH) released by the placenta during pregnancy that increases maternal cortisol/adrenaline could cause hyperadrenergic POTS in a pregnant woman if they don't make any or enough of the CRH binding proteins that render the glucocorticoids inactive. I wanted to ask this of Dr Grubb via email but don't know how to contact him. Does anyone know a contact email for him, or have any other info about the possible scenario above? http://www.parentingscience.com/Stress-hormones-during-pregnancy.html

oh, also I developed POTS when I was 4 months pregnant with my DD 4 years ago and it was never diagnosed or treated until this past fall. It was a really hard pregnancy and I was vey unwell and gor pre-eclampsia by the end (also untreated). So I was feeling daunted about being able to make it through regular life let a alone a pregnancy with untreated POTS again. I feel better knowing I can take some meds if I need to.

thanks ladies. I was lucky enough to get into see the OB today once I explained the situation. She did say to stay on the BB's and zoloft, but to stop the Klonopin. I was only taking .5 mg once at night to inhibit those adrenal surges. She said to use benadryl instead, which I used to do, but it give me restless legs. oh well. restless legs is better than adrenal surges. of course I started spotting today at the OB's office, so who knows what's gonna happen. I personally think stopping the BB's yesterday and having the adrenal surges/tachy, BP & dypsnea issues over the last 48 hours probably was not good for the embryo and might have threatened it. Hopefully things will ease up now that I'm back on the meds and everything will balance out ok.

I got a surprise positive pregnancy test. I'm 42 and we weren't trying. I already have my first app with an EP scheduled for tmrw and my PCP doc wasn't in the office yesterday. The on-call PCP told me to stop my BB's cold turkey when I called to ask about my meds and pregnancy. I took 25 mg of Metoprolol instead of the usual 50-75, but by today my BP is 111/95 and HR 110+ with pounding pulse and dypsnea. So I took 50 mg today. The on-call doc doesn't know me or about POTS. She also said to stop the Klonopin and zoloft. cold turkey. so I had major adrenaline surges til 2AM last night, and of course I feel like crap today. I'm kind of self-treating til I find a high risk OB and see the EP tmrw, so any advice, info, help or experience with what I should do in the meantime - risks, benefits of taking or not taking various meds, etc - is greatly appreciated. TIA!

I have started taking DHEA (25 mg's 2x/day). I have Hyper POTS/adrenal fatigue. The DHEA lowers the cortisol and I'm amazed at the results. I've been so much better as far as reducing my adrenaline surges and tachy/palps. I'm still on my BB's, but it's an improvement over just the BB's alone. Ive also started taking acetylcholine and phosphatidylserine, CalmPlex (theanine, GABA & 5HTP), and DLPA just to help the ANS, parasympathtic NS, and neurotransmitter levels. Just wanted to share. DHEA seems to be great for me.

has it helped anyone with hyper-Pots? I'm hopeful.... I'm specifically hopefuly that it wil help me drop the 30 pounds that came on suddenly over a 3 months time period. I think I have high cortisol, causing the fluid retention and weight gain (abdomen & face/neck), and I hope the DHEA will balance that and let the fluid and weight come off. I'm also starting Seriphos and acetylcholine. any experiences to share?