Altruism

Yeah, my doctor knew about the whole SNRI paradoxal effect on different patients which made me confident enough to trust her judgment. She suggested we stay on the safe side and try an SSRI first and I agreed.

Rama, does this mean SNRIs are bad for HyperPOTS with high NE? I mean.. we have enough high NE and if we block the reuptake, then we end up having even more?

Thanks a lot, everyone! I'm trying to make sense out of it all now )

Everything is normal Cortisol, thyroid, blood work, full panel etc.

Only high standing NE and positive TTT. I had high urine sodium 320 but a week later it was 150, so it's normal too.

Hi, unfortunately IV salines did not help. I've had 4 IVs in 12 hours and I felt absolutely nothing. Had 2 more IVs next time I was in the ER. I'm sick of being sick without answers.

Issie, I was severely anemic when I gave birth HG 7.9 borderline for transfusion. Now it's 14.0, so I'm not anemic anymore. Took iron pills for 2 months.

BTW, is it possible to feel a slight relief (OMG RELIEF) from SSRI on day 7-9? I'm only taking 25mg Zoloft, but I feel less foggy and lightheaded. I upped my benzo and it lowers my HR as well. Apart from the SEVERE morning adrenaline surges/anxiety attacks, my days feel a little better. Is it possible that I respond to SSRI>!!>!> Is it just in my head? And I also don't have side effects, that feels so abnormal... Hmm... Maybe it's just not working huh?

And we're so young, it's not fair!! We're not even 30... Why?!!

I am soooooooo sorry and I soooo know how you feel! Me too!!! I'm a failure, no one can suffer the way I do, I want to be able to take my child out, I question my dr, my dx, my meds, my sanity too..

I refuse to believe treatment is around the corner. I want help now! I'm upping my SSRI like crazy, upping my benzo, starting a BB and an antihistamine in case it's MCAS... I need relief TODAY. So sick of it all. Hugs...

I appreciate your post, but please, take into consideration that some of us NEED benzos to survive those first couple of weeks. I've been on an SSRI for 10 days now and without my benzo, I would've been dead. I'd take all side effects and withdrawal symptoms compared to the living **** I suffer every single morning.

Glad you're doing better too!

I'm used to sleeping like this for years due to GERD. Now the bed is even more elevated, hubby literally rolls down of bed LOL I don't know if it helps, but it doesn't hurt and I actually like it.

Thanks. Is there a way for this to be fixed?

Rama,

I know you're a POTS expert, however, I cannot understand a single word from what you're saying. It could be because English is not my mother tongue or the abbreviations.. )

I finally persuaded my PCP that I might have a mast cell issue, however, he has no clue what to test me for, so he asked me to send him a list of what needs to be done. Could you please help me with this? I can't believe he finally said OK, let's test you for all you want!

Thanks in advance! I found this list on a mast cell forum, but it's too complicated:

STEP ONE: baseline tryptase
(GP, allergist)
Normal... go to step three
Abnormal... go to step two

STEP TWO: bone marrow biopsy plus testing for mutations, CBC
(mast cell researcher, hematologist if you absolutely can't travel)
Normal... MMAS (as long as the CBC is normal)
Abnormal... SM

STEP THREE: RAST plus total IgE
(allergist)
Normal... go to step four
Abnormal... IgE allergies (rule out infections/parasites)

STEP FOUR: antibodies to FceRI, anti-IgE
(allergist... preferably one who's also an immunologist)
Normal... go to step five
Abnormal... autoimmune mast cell disorder (rule asthma, lupus in or out)

STEP FIVE: CBC, CMP, CA-125, Chromogranin-A, CRP, ESR
(GP, immunologist)
Normal... go to step six
Abnormal... can suggest a neoplastic or inflammatory disorder (more testing needed)

STEP SIX: C1q, bone marrow biopsy, mediators (tryptase, histamine, prostaglandins) during flares
(GP, hematologist, immunologist... bone marrow biopsy only by a mast cell researcher)
Normal... idiopathic urticaria, anaphylaxis, and/or angioedema
Abnormal... C1q is for hereditary angioedema (HAE), BMB could still suggest MMAS (based on mutations), elevated mediators on at least two occasions needed for MCAS diagnosis

Thanks for all the support!!!

I finally gave up and started Zoloft. Started at 12.5 mg, really low. Then I upped it to 18.5 mg and I'm planning on taking 25mg today. I still have HORRIBLE daily MORNING panic sensations with sweaty palms and feet, feeling a flushing hot/cold sensation in my arms, neck, head, cheeks and abdomen and I feel like I'm dying. I upped my Klonopin and it helps a lot in terms of sleeping - I sleep 13 hours now, compared to the 6 hours of sleep I was getting before.

By the way, I was reassured by a couple of doctors that Klonopin is ok while breastfeeding. I have to stay on dosage below 1 mg (I take 1mg now) and I check my baby if he's too sleepy. But researchers have proven than only ONE baby had issues with a mom taking Klonopin + 3 more drugs. So I'm trying not to panic.

Is the hot flushy sensation common with POTS? Don't start me on MCAS, cause I can't find a doctor to test me for this. I almost gave up and might just try hydroxyzine as it works on histamine and anxiety as well.

I still feel like death. Is this ever going to end?.... I'm ok to have POTS, but I NEED the terrible anxiety/adrenaline/NE to be controlled. It can be, right?

I take care of my baby. That's all. I sleep and browse dinet. I'm still in denial...

Maybe I should define "Exercising". I'm not sweating all over and my hr does not go above 120-130. I use my recumbent bike on resistance level 5 out of 8 and I feel ok at the end of it. I don't push too hard, I actually feel guilty for not pushing enough compared to other people. Mine feels like a walk in the park compared to what other people do. But this is all I can do.

Badhbt, I tried leg exercises, but they tend to work on the same muscles, so I just do the bike and try to stand up as much and as often as possible. I force myself a lot these days. Probably stand up 20-25 times a day for 1-2 minutes.

Ok, here is the big difference - I get these horrible surges while resting in quiet room, in bed, supine and relaxed! They come out of nowhere! Especially upon waking up...

My neurologist thinks it's not POTS since these episodes do not seem to be related to my position. Maybe I simply have developed severe anxiety?

I think I should stop avoiding real life. I don't drive because I'm afraid I might feel sick. And if I'm araid, it'll happen. I don't walk to avoid triggering episodes. I stay in bed and wait for SSRIs to kick in, so I can have a part of my life back.

Hyperadrenergic component is different than hyperadrenergic POTS (former is just high NE, latter includes high BP), that's what I was referring to in my previous post. I know it's the same as hyper ):

My sweating is normal. My QSART is negative, so it's not small fiber neuropathy either. My digestion is ok, except for a BM with every attack I get.

What could it be then if it's not autoimmune (ANA negative), not autoonomic neuropathy (QSART negative), not familial and not hyper POTS (no high BP)...

Congrats! I never ever thought I'd be praying for a bad test result and I am happy you got yours.

Badhbt, I think QSART test rules out autonomic small fiber neuropathy. Why is a biopsy needed?

Arizona,

We cannot detect my BP upon standing. BP cuffs give me errors even in the ER, so I don't know what happens :S I still prefer to believe I have a hyperadrenergic component as it sounds easier to "treat" than hyper POTS. I stopped propranolol because I was not able to tolerate it. Now I'm trying another one - metoprolol.

I think the worst part for me is the anxiety that a beast (POTS) lives inside me and controls me. Can I lose my sanity with a SEVERE unocontrollable adrenaline surge? Or pass out? Or have a stroke? What is the worst that can happen? I still get these daily and I'm soooo miserable...

I'm lost.

My TTT result is no significant BP change and my HR went up to 180 within 7 seconds (a record, I know lol) My Valsalva stage 4 overshoot was huge - BP increased to 190/120.

My 1st resting/standing NE was 290, then 7 min upright - 997.

My 2nd resting/standing NE in a controlled environment and on a beta blocker was 160, then 10 min upright - 599.

Do I have hyper POTS or not? My No 1 neurologist says it's POTS with hyperadrenergic component. My No2 neurologist says it's not hyper POTS because my standing NE should be ten (?) times higher than my resting NE.

I read that it should be above 600 to be considered hyper POTS and I'm confused. Any input will be appreciated. What are your NE levels and how did you get the Hyper POTS diagnosis?

Also, according to dr Grubb I think (can't find the link) hyperPOTS develops gradually and I got sick with POTS suddenly with childbirth.

My QSART test is negative, so no authonomic neuropathy.

I don't think I'm hypovolemic either. So what the **** is the root cause of my POTS and what subtype can I possibly be?!

CMReber, I think you just made my day!!! Thank you!! What was the cause of your POTS btw? Viral, pregnancy? What other meds did you use? Thanks for sharing your positive story!

I think most POTS patients believe they have hyper POTS.

I agree

I think many patient have hyperadrenergic component like adrenaline surges, jitters, etc., but not Hyper POTS with high blood pressure. That's at least what my doctor thinks is going on with me.

I have a month old too. I got sick after I had him, so it's soooooooooooooo hard to adjust. I can't take care of him, only breastfeed and cuddle in bed with him. On a very good day I can hold him, sing some songs and take him for a 5 min walk that wipes me off. I have no idea what I'm gonna do if I don't improve. Growing kids require growing attention....

POTS should get better, right? Most of us will improve with time..

Oh, I'm so excited for you!!!!!!!!!! How long after starting the SSRIs did you feel the difference?

I'm 4 days on 12.5 (upped to 20mg yesterday) Zoloft and I have increased anxiety, but I also feel less brain fogged and my hr is a little lower. Maybe I'm one of you too? Can't wait!!!!!

Elizabeth, I agree with you. I took his words with a grain of salt and I have scheduled another appointment with dr Byers to discuss the whole EDS/VEDS/BJHS confusion. I will keep you all in the loop.

hI cma,

I have pregnancy-induced POTS too and have a 3 month old baby. I just started Zoloft and I'm praying for it to improve my POTS. I have a million of questions for you:

1. Did you develop POTS during pregnancy?

2. How were you doing immediately postpartum? I'm bedridden on most days.

3. Do you get adrenaline surges/panic attacks? Mine are the SCARIEST in the world, absolutely unbearable!

4. What dose of SSRI are you taking? Did it take just a week for you to see your HR go down?

In answer to your question - you could have POTS that is regulated by SSRIs that regulate chemicals in the brain. If more serotonin = less NE, then you have POTS that is perfectly controlled with SSRI. I hope I'm one of you too!!!!