Altruism

I take 1000-1500 mg, is this a lot/ not enough? I haven't noticed a difference.

My doctor does not believe in Fludrocortisone and calls it "Expensive salt and water".

Anyway, I was curious how much exercise is too much? I do 30 min recumbent bike 5 days a week, but I'm housebound and bedbound on most days. Should I push myself more?

Jangle, I know you are one of the most well-informed POTS sufferers on the forum. I'm curious what tests have you done, how long have you been ill and sorry if asking for too much - what's your age? What subtype do you have?

Thanks!

Opss, you're in UK, not US. That explains a lot

I had no idea domperidone is FDA approved in the US! It's a miracle drug for GI issues and I used it a lot for my bad GERD years ago in Europe. Sorry I can't really help with the rest.

I wouldn't stop it, it's a safe drug, has been around for a while and if it helps - no way!

I know you're probably getting bored with my sobbing and whining posts, but things have completely gone out of control. I am so down, depressed, hopeless and sick that I don't even want to talk about it. I just want to ask you some questions, so I know what to talk to my therapist tonight:

1. Is PPD possible on top of POTS? In other words, did I develop a psychiatric disorder from all the stress, fear and uncertainty since I got the POTS diagnosis?

2. How can I tell the difference between a panic attack and adrenaline surge? Are they constant! Describe yours, please!

3. Can depression or PPD make my POTS worse or is it the other way round? I feel dizzier, unable to focus on things, numb, dumb, tired. Yet, I am jittery, anxious and feel IT coming as an adrenaline surge or attack every couple of hours. I have tons of desperate crying spells. I sob and think how hopeless things are. What's POTS and what's depression? Can you help me tell the difference?

4. Is Klonopin supposed to help? It's not helping me and I'm shocked! I loved my benzo, it was my miracle pill. How come it does not help? It should block NE and calm me down regardless if the reason for my anxiety is PPD or POTS or NE excess, right?!

5. How much do SSRIs increase anxiety? I'm terrified to take mine as I can't take any more anxiety! But mine feels like it's 9.5-10 out of 0-10 scale, so could it make it much worse?

6. I sometimes hate this forum (sorry). I was about to start my Zoloft when I read a couple of threads how it can cause autonomic dysfunction. Now I'm scared to take it.

7. Please, help me. It's the worst feeling ever. I'm drugged up and anxious at the same time; I'm sluggish, slow, fatigued and brain fogged but also nervous, sweating and feeling VERY bad in my own skin. How is that even possible?!

P.S I get all this while resting, lying down, not STANDING UP. Constantly, out of no where.

P.S. 2. My cardio was such a mean guy who said "You'll have it for life, admit it. No cure. So when I say jump (with a new med) you just say "How high"?
He wanted me back on metoprolol, my neuro wants me on propranolol, my PCP wants me to stop both as he thinks they contribute to my severe fatigue. Whom should I trust?!

I think it's not POTS related for me. I have congenital large vestibular aqueduct LVAS in my left ear and sensorineural (unidentified cause) hearing loss in my right ear.

I can't believe we are all so similar. I wish I could hug you all. Or had you as my family. Imagine we all lived together!

I have constant tinnitus with sudden onset Jan 2008. I have also bilateral hearing loss. Lucky me!

Nothing really helps mine - I've tried maskers, white noise, music, hearing aids..

Bebe!!! Same thing!!! I cant just go to sleep, I have to exhaust myself or at least my eyes.. I always fall asleep with my laptop and I wake up with it over/under/beside me.. As if tinnitus alone is not bad enough, we now have POTS

I'm so happy for both of you!!!!

A dumb question - what specifically should I get tested to rule out protozoa as a cause for my POTS? What type of blood work? Thanks!

Edit. I misinterpreted something here.

I'm getting desperate reading all this. Having a newborn is hard, but thinking about the future is breaking my heart... Is it gonna get worse? Am I gonna end up doing sofa-parenting? Won't we get better at some point? (((((

Maybe I'm in denial, but I keep believing that as soon as I find the right meds, I should be able to get my life back. How long have you had POTS? Aren't you taking meds, aren't they helping? If not, I won't even bother try and experiment.... Am I being unrealistic by thinking that SSRIs might control my anxiety and surges, BB can control my HR and then I can return gradually to normal life? It does not work like this it looks like. Why?!?! Is it the fatigue that comes back? And if you are on meds that control your BP and HR what keep bringing you back to the sofa/bed? Fatigue?

In other words, does it all mean that taking meds controls some symptoms, but we're still symptomatic enough to feel like crap most of the time? I can't do this. I just can't..

My question too. I have narrow PP and high diastolic pressure (like 100/89) all the time.

For me, taking a benzo helps a little and lowers more the diastolic, so it gets more like 100/70, which feels a lot better. But I would not suggest doing that, as we are all so different and your BP might actually crash from it.

While looking for ways to calm down my SNS and avoid having another horrible panic attack/adrenaline surge, I found this article. It might be old news for most of you, but it did help me start yawning and I felt a little more relaxed after doing it for 5 minutes. Worth trying!

http://barefootfts.com/blog/a-sleep-trick

Your sympathetic and parasympathetic nervous systems are at work all day, effectively battling each other. If you're a stressed, caffeinated kind of person, your sympathetic system is likely dominant throughout much of the day.

Sleep, however, is not going to happen until your sympathetic system can shut down and allow the parasympathetic to take over, slowing your heart and respiratory rate and in general putting you into recovery mode.

Often, this process takes much longer than we'd like, and we end up staring at the ceiling in the dark doing math to figure out how much sleep we'd get before morning if we just fell asleep right now.

Here's the thing though, the fluctuating predominance between the two nervous systems is tied into your breathing and you have control over that. On inhalation, the sympathetic system runs the show. On exhalation, the parasympathetic takes over.

If you're rooting for the parasympathetic, all you've got to do is give it more time on the field. Do this by controlling the duration of your inhalations and exhalations.

To minimize sympathetic input, make your inhalations quick and deep. Then, take a very slow, drawn-out exhalation. I've been using an exhalation of around eight seconds, with an inhalation of maybe two. As I get more relaxed I draw out the exhalations to ten to fifteen seconds.

It generally won't take long before you're yawning between breaths, noticeably more relaxed and trying to decide if you can stop putting so much thought into breathing because you've almost got to struggle to stay awake enough to do so.

I learned so much from all of you! I have 2 stand up MRIs on my to do list - 1. BRAIN MRI - done - to rule out MS and Chiari (it's normal, yay!)

2. Cervical spine (next month) - to rule out cervical stenonsis and... not sure what else.

What would be the treatment if I have cervical stenosis and how likely is it to be causing POTS?

What other neck issues could be causing POTS? My PCP is so uninformed, that I have to make all the decision and tell him what to refer me for LOL

Also, do I need flexion and extension for my neck MRI?

Thanks!

Thanks, lissy, sending you a big hug for your support!

Based on the results, I might have to create a second poll for those who are still bedridden to see what their POTS cause might be and how long has this been going on.

Can you send it to me too, please? It says page not found.

Also, upon standng my HR is 120-130,so I think I know in advance my HR is above the target zone.

I'm super confused when it comes to whether or not I have EDS.

All the women in my family are hypermobile, but it lessens as we age. I always thought this hypermobility is completely normal.

Now, after being diagnosed with POTS, I saw the No 1 EDS researcher Peter Byers. He said I do not have EDS, just some more mobility in my joints, but he said most people do have it too (he did the thumb to wrist thingy in front of me). He said that there will be a conference in Ontario (?) this year where researchers from all over the world will try to organize and change the EDS classification. He says it's overused now and not as many patients have EDS, just BHS. I am trying and willing to trust him, but it's hard. I'm taking huge dose vit C to help my collagen (just in case). I'm confused because at home I seem to score 7 on the Beighton scale, but Dr Byers said I cannot fully extend my knees and I cannot really touch the floor with my knees extended, so this is -3 on the scale. If he's right - I'm BHS. If he's wrong - I have EDS. We also did blood work for VEDS and I'm still waiting for the results (praying for a negative result).

Naomi, what are the statistics for women dying after childbirth with VEDS? I think it was 25%? I had a huge postpartum hemorrhage and it makes me wonder...

Anyway, I think the whole EDS and BHS thing is a mess. It needs to be reclassified. I hope they do it soon.

Haven't started it yet.

I have a question - my anxiety is already through the roof from POTS I guess. Do all people necessarily experience initially an increase in anxiety after starting an SSRI like Zoloft? I CANNOT tolerate any more anxiety, I'm on Klonopin and even it is not helping me nearly as much as it could/should. This makes me scared to start the SSRI, but on the other hand I understand it's my best shot.

Thanks!

I'm (re)starting Zoloft at 12.5 mg next week. Keep us posted, please. In December, I had no side effects with the 12.5 mg dosage.

Cannot answer either, but wanted to send you a virtual hug.

I hate bananas,

can you post/send me some links regarding life-long hyper Pots? This is very discouraging, but I need to know

Also, is hyper POTS the same as POTS with hyperadrenergic component? I feel I'm a weird case - no authonomic neuropathy, no pooling... I think my sympathetic overactivity is my biggest problem.

Seattle, exaggerated Valsavla response in phase 4 is the so call "BP overshoot" - you get very high BP at the end of the test. I think it indicated sympathetic overactivity and/or automonic dysfunction, That can include issues with vagus nerve and vena cava, I think.

Yogini, my newborn is 2.5 months old. It all started 2 weeks before I gave birth with very mild symptoms that I thought were normal for being so heavy (like being very tired ad unable to stand still at grocery checkouts), but POTS severely debilitated me after a very difficult and traumatizing delivery. I lost 1/3 of my blood volume, was in excruciating pain for 48 hours, epidurals did not work, inductions neither..

Amy, I was on SSRI in December - Zoloft. Started slow at 6 mg and upped the dose to 25 mg and then started having severe "SVTs" or sinus tachy - don't know yet. I thought Zoloft is to blame and stopped it. Unfortunately, I keep getting these heart issues every night, so it was not the Zoloft. I'm restarting it next week (now getting used to the BB) and hoping to feel some improvement.

Hi Angela, Thanks for the encouragement!

What do you mean by " it may be long-term illness vs. other pots"? Hyper POTS is the only one to stay?! It has a worse chance of recovery? It takes longer?

I'm despaired.

P.S. My thyroid levels were ok 2 months ago, unfortunately.. I wish it was something that simple. With an exaggerated Valsalva response in phase 4, very high standing NE (997) and failed TTT (180 pulse in 7 seconds), I think I finally know I have POTS with hyperadrenergic component. I hope it's a step towards recovery.

Amy (and you of you, guys),

I truly appreciate your care and support! I couldn't have survived without them!

I'm taking a BB and starting an SSRI next week. So far nothing helps my symptoms, but at least I learned a lesson - I should never take 1/8th of Klonopin and then another 1/8 an hour later - it has to e taken altogether (like 0.5 or more), cause it has long half-life and then it can actually control my anxiety.

True. With 0.25 3 times daily or 0.5 twice, I seem to be doing a little better. I still get bad attacks, but they are nothing compared to the day I posted the thread. I hope BB affect anxiety by blocking NE too, so I truly expect an alleviation if not an improvement..

Thanks again! Love you!