AllAboutPeace

I was prescribed a low dose of fludrocortisone yesterday, and was wondering how other people had found it. I have POTS with definite hyper-POTS tendencies and occasional BP spikes.

Did you find it helpful to your symptoms? Did you get any of the side effects like weight gain in icky places, worse tachycardia, low potassium or worse sweating? High bp? Did you manage to come off it eventually, and how did that go?

Never known anyone on it and a bit wary, so any accounts would be helpful.

Hi Freaked,

I'm not hyper pots (although I'm quite sure I would have been diagnosed that way in the beginning). Florinef has been helpful for me. If you search my post "mad love for Florinef" or something like that - I described in detail how it affected me in the beginning. (I would link it but i dont know how to do it from my tablet...) It took four full weeks to really make a difference for me.

I started at .1 and in the 5th week I went to .05 because I was feeling quite bloated and I wondered if I I could get by on a smaller dose. Over the next several months the positive effects slowly deteriorated (so I think I need the .1). I went back to .1 for a few weeks then as per docs orders stopped it for my ttt. So after 9 mos on it, I tapered off in about 5 days with no side effects. I stopped it for about six weeks due to trying another med but I am back on it now, because I could see how much it was helping me.

So, for your questions:

Helpful? Yes

Weight gain? 5lbs with a bloated feeling, but I find now that adjusting salt/water intake resolves that

Worse tachycardia? No, helped with that

Low potassium? No. I had low potassium when I first got hit with pots, but no issues on Florinef. I don't use supplements but do make sure I get foods with potassium in it.

Worse sweating? I stopped sweating when I got pots and I started sweating during exercise (appropriately) while on Florinef

High BP? It only raised my low BP by about 5-8 points so I had no extremes with it.

Issues with stopping? None, except the return of pre-Florinef state.

I was really hesitant to try it in the beginning, but I was glad that my doc pushed me to do it. IV saline was very helpful for me, so that fact gave me the extra push in thinking that Florinef might be as well, since they both work on blood volume.

Hope it goes well for you

Ashley,

I was rx'd midodrine after adding an NCS diagnosis within the last few months. I took 5 mg 3x/day for about 2 weeks. I did have the tingly/chills, etc. which I was ok with, but I also felt very tired and sluggish (similar to what you describe, I think). I spent more time on the couch. It didn't increase my BP, but it did lower my HR. A study I read showed that it can drop HR an average of 6 points and since I already have low hr, it wasn't a good thing.

I never did feel that boost that others talk about getting and felt worse on the med, so I stopped it. So, it's back to Florinef for me.

It's tough to try to figure out dosage, but I figured if the dosage was enough to give me known side effects, it should be enough to give me good effects. (Who knows?!?).

Take care & let us know how it goes

s-pot,

I'm sorry that you are having such a horrible crash. I can definitely empathize with feeling so awful because of brady and low BP. The only time i had a recorded BP like yours, I was unconscious. I really hope things improve for you soon!

I don't know what causes the Brady (other than just a mixed up ANS). When I first had pots my HR was around mid 60's or thereabouts and has dropped consistently over time to settle around low 50's. I do get mid to low 40's from time to time with a consistently low BP and it definitely is one of my least favorite Pots symptoms. I get presyncope, really weak, cold and nauseated as well. All I can do is wait it out as I can't seem to speed it up when it gets stuck at a low rate.

There was a thread yesterday re: Brady by LMG if you haven't seen it yet.

Stay as hydrated as you can. I would definitely be wanting a saline IV to help with that if you go to the hospital.

Take care

Hi LMG

I hope this was just related to the salts and isn't a setback for you!

I feel awful with brady too. I just had an episode a few days ago when I felt pre-syncope while sitting. I actually ended up calling a relative to come over because I felt so awful and didn't want my son to be alone with me. It feels like passing out at that stage wouldnt be like a regular faint (sudden drop in bp and hr which typically, for me, occurs with standing) that you would recover from pretty quickly once you get flat. When I checked my HR it was low 40's and it feels like it gets 'stuck' there.

I have tried different things before to increase HR at those times but, for me, nothing works (which makes sense, I suppose if its neurally mediated). I've tried caffeine, moving around and even got on the recumbent bike to try to get the blood pumping (although that's tough to do when you can barely function!). Nothing works. The only thing I can do is wait it out - usually an overnight sleep will reset things.

So, hopefully someone else will have some helpful suggestions I can definitely empathize with you though...

Your story is amazing Maia!! Thankfully, you discovered that your symptoms were alleviated by lifting that "unknown mass", so you had that extra boost to strongly advocate for yourself. (And even the gentlest Potsie soul has probably fantasized about throwing around a few expletives after a frustrating ER visit or medical experience and even better to have discovered the cause of your own pots That is such great news!

Also great that you are sharing the news to help others. I don't feel like its an issue for me, but I do think about those people who have posted on dinet that their Pots symptoms are alleviated by wearing an abdominal binder.

I'll look forward to your updates

Wow, Alex, thanks for posting this!! Amazing results for that family!!

There must be a relatively simple way to check the blood flow in the jugular to see if that is an actual problem, right?? Ultrasound?? If I recall correctly though he was also speculating that the effect may be coming from the way the procedure affects the vagus nerve.

Really interesting...

I came across two articles today that I found quite interesting.

The first is "Prolactin and Autoimmune Disease in Humans"

http://www.actabiomedica.it/data/2007/supp_1_2007/chuang.pdf

Abstract.

Prolactin has been shown to have immunomodulatory as well as lactogenic effects. Generally less

well known is that prolactin may also play a role in the activity of autoimmune diseases such as systemic lupus

erythematosus and rheumatoid arthritis. Studies have shown decreasing prolactin production to be beneficial

in animal models of autoimmune disease. Thus far, double-blinded, placebo-controlled studies of

dopamine agonist treatment in humans with autoimmune disease have been done only in lupus patients, and

support the potential efficacy of such agents. Small, open-label trials have also suggested potential benefit in

patients with rheumatoid arthritis, Reiter’s syndrome, and psoriasis. More studies are required to further delineate

the mechanisms by which prolactin affects autoimmune disease activity, to determine in which specific

diseases prolactin plays a significant role, and to test the efficacy of prolactin-lowering agents as therapy

for such diseases. (www.actabiomedica.it)

"Studies of patients with hyperprolactinemia of

various etiologies have suggested an increased rate of

autoantibodies (including antithyroid, anti-dsDNA,

anti-ro, anticardiolipin, and antinuclear antibodies

(ANA)) without clinical evidence of autoimmune disease

(28-30). Conversely, elevated levels of prolactin

have been found in patients with SLE, RA, psoriatic

arthritis, multiple sclerosis, Reiter’s syndrome, primary

Sjögren’s syndrome, psoriasis, and uveitis (18,

30-33), leading to hypothesized causal relationships

and a possible therapeutic target."

The second is longer (30 pages and more clinical) and is titled "Prolactin in the Immune System". I posted a few excerpts...

http://cdn.intechopen.com/pdfs/42139/InTech-Prolactin_in_the_immune_system.pdf

"In pathological conditions, increased levels of PRL could cause deterioration of the

subject’s condition. In this review, we integrate the information on regulation of PRL

synthesis with that concerning its physiological and pathological actions in extrapituitary

tissues, highlighting those in the immune system."

4.1. Prolactin and autoimmunity

The interrelationship between PRL and the immune system has been elucidated over the

last 2 decades, opening important new horizons in the field of immunoendocrinology [93].

The autoimmune diseases are more common in females, and sex hormones could have an

important role in this gender bias. Estrogens and PRL modify the immune phenotype and

functions; furthermore, they are able to modulate both the innate and adaptive

immunological response. PRL exerts an immunostimulatory effect and might promote the

development of autoimmune diseases by different mechanisms, such as impairing the

negative selection of auto reactive B-lymphocytes occurring during B-cell maturation into

fully functional B-cells [94]. Moreover, PRL induces an anti-apoptotic effect, enhances the

proliferative response to antigens and mitogens, and increases the production of

immunoglobulin, cytokines, and autoantibodies. In murine models of some autoimmune

diseases there is a clear association between hyperprolactinemia and disease progression.

Indeed, moderate hyperprolactinemia has been found in a cohort of patients with

autoimmune diseases like SLE, rheumatoid arthritis (RA), Sjogren´s syndrome (SS),

Hashimoto´s thyroiditis (HT), and multiple sclerosis (MS) [95-98]. These data are

controversial, since some studies have not found a consistent correlation between PRL levels

and disease activity in humans [99]

Hmm...might be time to fill my dopamine agonist Rx...

I love all of the theories, so please keep them coming! Thanks, Rich!

I've been going over symptoms and thinking about how this theory would apply to them. I had been thinking that there was a malfunction at the brain level (i.e. feedback messages weren't interpreted properly or brain 'set points' are off), but, as I understand your theory, it could just as easily be that the messages simply aren't getting transmitted properly. It could theoretically explain why we don't always have the same reaction to the same stimuli or situation, right?

How would this account for the people who recover though? Would you consider those people in the other 20-40%? (since you mentioned this could possibly account for 60-80%). I'm thinking that there wouldn't be a way to repair this without some sort of stem cell treatment to repair the sheath/fibers???

He has been checked out by a rumotologist but I'm wondering if it's time for a second opinion. He has complained of this pain for a long time. Since he has had the flu, he has never been able to get back up and walk. Our pt has him do an exercise where he sits down and pushes himself almost into a standing position and then sits down. He does not shake at all when he does this. However, when he is standing all the way up, he shakes from waist down and might be able to do this for 10-15 seconds. The pt and I have noticed this shaking seems to be getting more severe as each week passes. My son has never worn compression socks or hose before. Where is a good place to get these?

So, if I'm understanding right, it sounds like you and the pt may be thinking that the shaking isn't due to weak leg muscles (since he can do the other exercise without shaking)? I'm a big believer in trusting your gut instincts, so I think if you are leaning towards seeking a second opinion, it might be worth pursuing.

Peace, I am leaning towards the same "1 out of 3" category, but my neuro is the kind of guy who doesn't leave any stones unturned and will try to figure out some connections. Unlike my POTS dr, he really believes in "cause and effect" kind of things and likes to find the root cause of things. He is also familiar with POTS and has a couple of patients with dysautonomia other than myself. I am lucky to have found him.

Wow, that is soo awesome! I do wish I had someone who wanted to connect the dots - I'm incredibly underqualified to be trying to do it myself

Welcome to the group livingwithpots & Susan

The swallowing issue is very scary - sorry you are having to deal with that As badhbt mentioned, it is an autonomic function so seems to be a Pots/dysautonomia thing.

Here is a link to an earlier thread where it was discussed. There may be something in there that's helpful. http://forums.dinet.org/index.php?/topic/19135-has-anyone-had-trouble-swallowing-dysphagia/

I have the same issues with swallowing. I constantly choke on virtually nothing and I know how very scary it is. I've been home alone and it has happened a few times and thought I was gonna die.

Same for me! It's amazing what we can learn to live with when we have no control over it.

Thanks for all of your research Alex Are you finding any info that seems to fit in your case?

The dopamine thing doesn't seem to fit for me either and I was on no meds. I also have never had the 'symptoms' of low estrogen (interesting because of the high prolactin/low estrogen connection), in fact I feel like I'd lean a little towards the excess estrogen category (unexplained infertility, miscarriage, very dense breast tissue, etc, etc.) or at least it has always felt out of balance.

As soon as I saw your note "one in three have no identifiable cause", I sense that is where I'll end up. I feel like I would literally fall off my chair if a doc said to me "you have 'B' and it's caused by 'A'".

Now that my thyroid levels are corrected, I'm going to ask for a recheck of prolactin just to see if hypothyroidism was the cause. (unlikely).

I have high prolactin and I did have some lactation over the summer. 44yr old non pregnant female...kinda weird. I told my primary I had breast milk and let downs and he thought I was probably over thinking my symptoms. Besides offering to feed him I really had no intention of proving it.

'over thinking' your symptoms ??? It's a good thing when we can laugh at all of this craziness..

Alex,

I'm glad you posted this. I had elevated prolactin levels too. My docs were checking me from head to toe and inside/out at the time, but didn't say much about it other than "huh, that's unusual".

That was when I was hospitalized after sudden onset of Pots but before diagnosis. They ended up finding a suspicious spot on my brain C/T, another on my lung C/T and breast lumps, so between all of that and the ecg changes, and the fact that I suddenly couldn't function at all, the prolactin level was just filed away as an odd finding. I did have a brain MRI the same week too and it came back fine.They started me on meds for hypothyroidism shortly after, but said my numbers weren't super low, so that shouldn't have caused an issue with prolactin.

I've been wondering about it recently though and now that lots of time has passed, I'm curious to see if it is still high. My Pots doc tends to brush off stuff like that, but my GP is always great to check things for me.

I'd love to know if you find out any more about it. I wasn't aware of an osteoporosis connection.

Looneymom,

I feel like sitting still is always going to be an issue as long as there is blood pooling. Are they also doing leg strengthening exercises with him to build up his leg muscles (to help combat pooling)? All that I've read and heard indicates that working on the skeletal muscle pump is the key to dealing with pooling. I'd love to hear some personal success stories about this, if anyone has some to share

As AZmusic mentioned, have you tried him with compression?

My symptoms are much like other posters: I can't sit very long without my feet up because I start to get the cascade of symptoms (lightheadedness, brain fog, chest discomfort, nausea, etc) and it knocks me down for a long time. Does he get those kinds of symptoms as well while sitting? If so, it might be really beneficial for him to have a stool to put his feet up on while writing tests and it might be helpful if he was able to get up and move around at a particular interval. I know my cognitive function goes downhill as more blood pools and that could make writing tests more challenging.

I can sit at the dining room table for about 1/2 hr with feet up and I do get sore from that. If I keep shifting around or get up and down, I can drag the time out a little longer, but being still (sitting or standing) doesn't work well for me. Maybe it's stomach pooling too and just overall poor circulation?? Lower back and hips is where I feel the pain too, but for me it's only when sitting. Does your son have this while reclining or supine as well? I have tried to keep my feet down for periods of time in hopes of challenging my body a little bit, but the pooling just happens and I end up being less functional as a result and then I have no energy for working on leg strengthening. Pots is such a complicated animal...

I hope the combination of therapies will help him get back on his feet soon!

Oh my...that sounds like an awful experience (...and your poor body, yikes! Thankfully you didn't hit your head!) I'm glad to hear they are taking care of you and the IV's are making you feel human again.

Take care & hope you are feeling better soon

I really hope things go well for you, Naomi ! I know that you have been on the SSDI roller coaster for much too long.

Let us know as the dates get closer so we can send good thoughts your way...or maybe we should all show up with you for support

Oh, whew! Hopefully everything will be fine - the extra thoughts and prayers wont hurt

I'm going through the same investigations. I had felt a lump before Pots but didn't pay much attention. When I was diagnosed with Pots, they investigated and biopsied the lump. While doing the biopsy they accidentally found a second lump - radiologist started doing the biopsy of that lump when I noticed "hey, your in the wrong spot" . Keep in mind that I had a mammo and an ultrasound that both missed the second lump.

That biopsy, a year ago, came back with good news (thankfully . So I've been doing follow up testing every six months and recently had another mammo and ultrasound. This time, just like the last, the mammo showed NO trace of either lump, but they are still there...kinda scary when they already know exactly where they are! So now the surgeon wants to biopsy the second lump and is sending me for a breast MRI. He just wants to be sure.

Anyway, I'll be thinking of you and hope everything goes well. Keep us posted!

Glad you guys enjoyed it! I know sometimes reading something inspirational or positive can make my day.

And, AllAboutPeace, your description...dramatic, possibly; but sadly, right on most of the time! lol Definitely gives a great visual!!! (I suddenly was reminded for some reason of the train in Mr. Roger's Neighborhood, though much less appealing haha)

Mr. Rogers neighborhood...too funny!

I just had a conversation about this recently with my sister in law who is a nutritionist. She recommended a Nutri-bullet. Apparently, it is great for doing all of the same things (including nuts, seeds, etc) only the price ticket is lower. She has one and uses it daily and it's super easy to clean because you mix it in your serving cup (just like a Magic Bullet in that regard).

What a great post ! So creative, honest and diplomatic

Maybe a restraining order...

Congrats, on the birth of your child, Rama!

For all of you that are on that wax/wane cycle, it must be really tough when it hits again. I've only had it for 16 months (seems like a lifetime but compared to some of you it's nothing). My functional level is still pretty low but as long as I was having even the tiniest baby steps forward, it seemed somewhat manageable. After 11months I was able to drive short distances again with meds, but the last few weeks I've had to give it up again. Soo frustrating when you can't alter the course in any way...

The last time I had a good exercise (although brief) was during my last stress test. I had the usual fatigue going in, but was determined to push myself so I could test my limits while monitored. It felt awesome to have the blood pumping everywhere it is supposed to go. So, even though I was exhausted, it felt good. But, 5-10 minutes later I totally crashed (bp dropped out and I had to get flat in a hurry).

I can't seem to do cardio at all and a 10 minute walk around the block includes nausea the whole time. I can usually keep other symptoms at bay by keeping the pace (no stopping).

Using weights seems to go better.

Altruism,

I also get a rash from the sun (through clothes & on my thighs). We were discussing it recently on a different thread. I've never had an issues like this prior to having Pots. Not sure if your is the same thing or not, but after I had it a few times I noticed it was a 'net like' rash with an outline of red and white in the centers. Here is the link to the other thread, so you can see if it fits for you.

http://forums.dinet.org/index.php?/topic/22701-anyone-experienced-something-similar-to-this

I remember other threads about similar things too. Not sure what keywords would pull it up though - maybe 'sun sensitivity' or something like that.

My goal is to not say "huh, what the heck does that mean?" when I read some of the posts, articles and studies on here about Pots and all things related.

I'm currently taking on-line university courses in Nutrition and Physiology to hopefully have a better understanding of what is going on and where I can improve. I've already made a few dietary changes and my plan is to try to create an 'optimal' diet based on my current circumstances. I don't expect any quick fixes, but I'm hoping that over time it will make a difference. I would love to actually feel well enough to want to do things again.

Exercise has been an "epic fail" (as my son would say) so far, but I'm still slowly working on it and hoping for improvements there too.

What are your goals, Aussie?

Very nice...and a great reminder...

It's interesting isn't it? I can look around at those in my life and see that they could never lose their value to me. In fact, I'd be quite upset if I thought one of them didn't feel valuable to me - whatever the circumstance. Like you said though, when you're looking out at the world, weak and battered after being repeatedly pummeled by an imaginary freight train in downtown Potsville, it's tough to remember that the same thing applies to us. {too dramatic ?? }

Thanks for sharing & have a good weekend too!