Altruism

badhbt, I wanted to ask you - did you make your neurologist consult with dr Blithsteyn? Did it work? Was it helpful? Thanks

Water, saline IVs and salt do NOTHING for me. I feel like I'm the only one. No relief whatsoever.

I don't mean to be rude, but a 6 hours ride is nothing when you get to see a top expert in the field. I'm jealous, honestly. The closest one to me is 3 days away (with a car, I can't fly at this point). If I were you, I'd see her.

Hi, I live in Seattle and I'm having a really hard time finding a decent cardiologist who believes in dysautonomia and not in "you're just deconditioned". I have a POTS diagnosis from a neurology clinic and he still does not think it has anything to do with my increased HR (?!). Please, pm me if you know a good cardiologist in the Greater Seattle Area. Thanks.

Wishing you a successful surgery and a speedy recovery!

I truly hope the user meant it's gonna get worse before it gets better, otherwise it's pretty discouraging.

I did not know I had POTS while I was giving birth to my son 2 months ago, so no precautions were taken. However, after the epidural, my blood pressure and heart rate were sky high - 160/110 and pulse 150-170. The nurse kept telling me it's normal, but I knew it wasn't. Just wanted to let you know that there are POTS mommies whose vitals go up instead of down with epidurals.

I thought about this too. EDSers tend to slouch and we also have cervical issues, so I'm sure a good posture helps a lot. Based on the Driscoll theory, I bought a cervical soft collar and I try to wear it often to help with my posture. My tinnitus and neck pain improve with it, sometimes it helps with brain fog too. So yes, posture matters!

MomToGuiliana, I get these rushes exactly when I wake up or seconds before I fall asleep too! I feel hot and cold at the same time, a feeling of "coming doom", fear and lots of tension. Then my HR increases up to ... 180+ in a resting position! I will dig into this more... And I'm pretty sure it's hormonal - 1st episode came 24 hrs after I gave birth, second one(s) - when my 1st postpartum period came. Hm.. If it turns out I do have SVTs... I know ablation could make my POTS worse (though I don't know how much worse can this be, I'm bedridden and suffer 24/7). But if it's PSVT - how can I take care of this without making my POTS worse? Is anybody else with SVT and POTS on this forum?

Thanks for responding, guys. I'm definitely giving up the Metoprolol. After taking 2x 25mg, my heart is still 120+ upon standing. This is NOT normal, right? I'll look into trying a different one, maybe propranolol or labetalol (wrong spelling I guess). Angela, a stupid question - What are H1s and H2s?

Hi, thank you so much for taking the time to respond! It made my day! I've tested negative for Sheehan's. I am about to rule out Pheo next week. I'm having high BP when standing with low pulse pressure. My EKG was normal except for some trace valve regurgitation. I have unexplained SVTs and I'm wearing a Holter monitor this week. But the surges are so scary! I was hoping more hyperPOTsies will chime in, I really need to differentiate between anxiety and NE surges... You're right about the hard time I'm having when I have to admit I've lost control over my body and my health. But this feels like fear+anxiety+more! It's undescribable and so scary! It's like the worst panic attack in the world that sends my heart into PSVT... I'll see 3 docs next week, hoping to find some answers..

+1 right leg swelling weirdo! POTS hit me immediately after I gave birth. The very first thing that I noticed after that was the swelling in my right foot. It was twice as big as my left one! I was told it's probably due to the epidural (?), but I seriously doubt it, as otherwise it should have been seen in both legs.

Thanks for your responses, I appreciate you took the time to answer my questions! You're right, I'll ask for a different BB when I see my neuro tomorrow. After developing severe SVT issues last week, I definitely need one that actually works. TraceyF, I also wonder about MCAS, flushing episodes and cold extremities and I too feel like I'm self-diagnosing constantly. Ugh! I'm lost. Looks like I have postural tachycardia, resting bradycardia and panic-induced SVTs in any position. What the **** should be the treatment plan? BBs will lower my resting pulse too much, but SVTs are killing me, not to mention that I'm bedridden from the tachycardia. I'm not convinced I can survive all this.

P.S. One more thing is a flushing sensation in my face, neck and hands. Should I look into MCAD as well or is this a normal symptom for an adrenaline rush? I have EDS, so I guess I should? Ugh, I've been here for 2 weeks and I feel like I need a manual "Pots for dummies". I'm trying to read, learn and understand it all, but it's so hard..

Hi, I've had postpartum POTS for 2 months now. Five days ago, after another hormonal shift in my body, I experienced multiple "anxiety attacks" that lead to severe and scary SVTs. I'm now wearing Holter monitor at home, but I feel like death 24/7 Please, help me identify whether I'm having anxiety attacks due to fear of what's going on with my health or adrenaline surges due to sympathetic ANS overactivity. I'll try to describe the sensation - it happens while sleeping, resting or reading something. Out of nowhere, I feel nervous, sweaty (especially my palms and feet) and panicky. Then I feel hot and cold at the same time, kind of hard to imagine, I know. Then I assume it's anxiety and try to breathe deeply and focus on something else, but I can't!!! It gets worse and worse, I feel like my stomach is squeezed and my heart keeps racing more and more... until it goes into SVT!! It's so so so scary and it feels like I'm dying! It races for a couple of minutes and then it's usually back to normal, but the nervousness stay with me for days. Then I have another attack a couple of hours later. It's the worst feeling in the world! Can you please help me identify if it's anxiety or adrenaline rush? Has this happened to any of you? I take Klonopin (0.25 with every attack) and Metorpolol (12.5 mg with every attack), but it's not helping! Please, I am at my wits end! I'm seeing my neurologist tomorrow and since I'm educating her about my disease (familiar, huh), I need to narrow down if it's adrenaline surges due to Hyper Pots and NET defect or "simply" uncontrollable panic attacks due to hormonal changes in my body. Can adrenaline surges lead to SVT? How about anxiety? Can I die from all this - it definitely feels like I am!!! Klonopin normally helps with my anxiety, but this time it does not, so I'm really scared... I need this to stop! I can live bedridden, I can survive the debilitating POTS symptoms, but I cannot live on the edge of life and death with hourly SVTs, it's too much to handle... Any input will be greatly appreciated. Thanks a lot, Lucy

It should be a patient's blog, I've posted the link. You're right, I should not obsess over blogs and focus on medical facts, but I needed confirmation that it's NOT true.

While researching the topic, I found this text: Combination POTS is blend of Partial Dysautonomic (PD) POTS and Hyperadrenergic POTS. Combination POTS patients have LOW blood pressure (like PD POTS) and have HIGH blood pressure (like Hyperadrenergic POTS); they also have a HIGH heart rate. A patient’s BP can spike or drop without warning and sometimes without a clear cause. Combination POTS patients have a high level of Norepinephrine (NE) causing their sometimes high blood pressure. Hypermobility Joint Syndrome is a major characteristic of Combination POTS. If a patient has high Norepinephrine (NE) and has Hypermobility Joint Syndrome; it meanings they’re the Combination POTS. True Hyperadrenergic POTS patients can NOT have Hypermobility Joint Syndrome or LOW blood Pressure. The Combination POTS patient can have any innumerable blend of PD and Hyper POTS symptoms. The Combination POTS patient is the most common and the most difficult to treat. PD and Hyper POTS have completely different treatment plans. If a Hyper POTS patient is treated with PD POTS medications; that will make the patient very sick and visa versa. Their doctor has to assess if the patient’s symptoms are more PD or more Hyperadrenergic and treat them accordingly. Over time their PD and Hyper POTS symptoms can wax & wane over time for no known reason. So having a good understanding of both types of POTS is crucial to understanding the patient with Combination POTS. Combination POTS is a chronic disease and the patient will unfortunately have it the rest of their life. As far as treatments that are used for both types of POTS and will work for Combination POTS is: exercise, Beta Blockers, a low carbohydrate/high protein diet & regularly getting stage 4 sleep. Source: http://dysgirl.com/tag/hyper-pots/ What puzzles me: 1."If a patient has high Norepinephrine (NE) and has Hypermobility Joint Syndrome; it meanings they are the Combination POTS. True Hyperadrenergic POTS patients can NOT have Hypermobility Joint Syndrome or LOW blood Pressure." - is this true? Why true hyperPOTsies cannot have EDS, can anyone explain this to me, please? Does this mean all EDSers have either PD or ComboPOTS? Hm! 2. How is combo POTS treated? Is it possible to treat? What is considered combination POTS and how is it diagnosed? I have very low pulse pressure and high BP while standing, but low BP with low pulse pressure while sitting - is this indication of hyper POTS or combo POTS? 3. What is the prognosis of combination POTS? Is it worse than the other POTS subtypes? Thank you!

Hello, Do you all see the benefit of taking a bb? Have you been on different beta blockers and which one worked for you? Do beta blockers lower your: a/ standing hr b/ resting hr c/both I know some people do not take them for MCAD reasons or because they feel more tired, but it seems like the rule of thumb is that beta blockers dovhelp lower everyone's hr to some extent, but they do nothing for my hr I'm taking metoprolol and it does not affect my hr at all. My resting hr gets a little lower (55-60 from 65-60), but my standing hr is still 140+. Is this normal? What subtype of POTS could this be? Thanks!

Thanks for this awesome information! I am way too symptomatic to read/learn/use my brain now, but IF/WHEN I get better, I might give this a try.

Thanks for all your responses and encouraging words! However, I feel so embarrassed now, since English is my second language I made a BIG mistake - I was having SVTs, NOT PVCs!!! I just double checked with my husband. Same question again: Is SVT benign and not life-threatening? Oh, I feel so stupid now for making this mistake..

Offtopic: Do beta blockers work for all of you? They seem to do nothing for my HR... I still get 140+ upon standing. I've tried metoprolol 50 mg daily, 25 mg daily and 12.5 mg daily. No response whatsoever. Every single doctor keeps telling me that BB should be able to lower (if not control) my HR, but this is not the case with me. Am I the only one?

Hi, I just started a similar topic. I am a pregnancy-induced POTS case and I'm breastfeeding. My baby I 2 months old and I'm bedridden due to severe POTS. On top of this, I developed severe PVCs 2 days ago and I also had my first period. So, YES, I got substantially worse with my period coming and I developed much more health issues - including these scary palpitations, heart fluttering sensations and severe dizziness. Do you girls think oral contraception helps? Or stopping our periods altogether?

On top of my POTS, I started having severe PVC episodes about 36 hours ago. I went to the ER and they did pretty much nothing. I am wearing a Halter monitor at home now and I am praying and hoping I don't get any more of these scary sensations!! It feels like my heart is a butterfly, trying to escape from my chest! Anyway, the first time I had this was 24 hours after I gave birth (exactly when my POTS started as well). I attributed it to hormones. I am now breastfeeding and I thought my period should not be coming any time soon, but it started together with the scary PVCs 36 hours ago. Is this possible that PVCs are related to hormonal shifts? Are PVCs POTS-induced or I'm being double unlucky with a heart disease and dysautonomia both triggered by childbirth? :S ::S Do PVCs always require an ablation and how am I going to get one if it makes POTS worse? I'm scared, please help me. Bedridden, bleeding, feeling like dying and unable to find answers while having a newborn is more than I can handle. Thank you!

Hi again, thank you so much for the warm welcome! Mytwogirlsrox,I am so happy for you being undiagnosed with POTS!! It must be the best feeling ever! As for your question - I was put on SSRI Zoloft and I'm taking Klonopin occasionally. I was put for 1 evening on Florinef 0. 1 and Metoprolol 25mg while being on the cardiac floor in the hospital, but I had high BP, dizziness and it did not affect my HR, so the cardiologist stopped them both. Do you think I should give it another try? Do beta blockers take some time to start working or I should see the effect immediately? I know Florinef takes some time... misstraci, I am sorry you are suffering as well. I was tested for Sheehan's last month and it was negative. By the way, did you get POTS after giving birth or after weaning off your baby? I'm scared... I'm already nearly dead, suffering, bedbound and if things get worse when I wean my baby off... I can't imagine how much worse they can get and if I can handle it. I can't do this anymore.. badhbt, thanks for your response. I was tested in the UW Neurology/Epilepsy center and I had all the autonomic testing done there. I am seeing a neurologist at UW, but I'm not convinced her specialty is dysautonomia, so I'd love to have a second opinion from the neurologist in Everett you mentioned. Could you please give me their name? It takes FOREVER to see someone in UW, I'm sure you know this. It only took me 2 weeks for my 1st apt because my cardiologist referred me as a very severe case. I can't walk, I can't stand up for more than a couple of secs and I can't even do the TTT... Chaos, thanks for commenting, I've read plenty of your posts as it looks like we have similar issues. I don't think I am deconditioned, because I was on bed rest from week 28 to week 33 and then started moving around as much as I can. Looking back, now I see some POTS symptoms in my ninth month - being unable to stand still at grocery lines, having "anxiety attacks" that were adrenaline rushes, etc. but it was all NOTHING compared to the **** I live in after giving birth. In terms of the blood loss - my anemia is gone and doctors said my blood volume should be back to normal 24-48 hours after delivery, is this true? I still think I'm hypovolemic, but I don't want to do the blood volume test due to radiation issues. What puzzles me is that saline IVs do NOTHING for me?! Is this normal/possible with POTS? Compression stockings and binders provide no relief whatsoever. I'm getting hopeless.. Anyway, was your POTS induced after you weaned your child off? Does it wax and wane? Have you ever been bedridden from it? Thanks! Hi corina, I'm European as well (Eastern European), but I live in Washington (PNW) and I'm seeing local doctors for my condition. Sorry I can't help, but I wish you luck!

P.S. My first symptoms while pregnant were inability to stand still in lines and fatigue, but I thought this was normal for all pregnant women... After delivery I was incapable of standing and sitting and my heart rate was over 170 in supine position. I thought I WAS DYING, it was like the worst possible panic attack x 100.. I left the l&d yard in a wheelchair and have been bedridden ever since with terrible lightheadedness, fatigue and OI