jangle

10-40 mg of propanolol is an extremely low dose. The maximum prescription strength is 640 mg, it doesn't start to slow the heart down until about 30 mg and really to slow the heart down doctors prescribe around 160 mg a day.

It has been shown in studies that POTS patients don't tolerate beta blockers in higher dosages. This could be what's affecting you, but if it were me I wouldn't worry about heart attacks and/or other serious side effects at that dosage level.

EDIT: The heart autoantibodies and the beta/alpha autoantibodies I don't believe have an explicit blood test yet.

The ACHR can be run here: http://www.mayomedicallaboratories.com/test-catalog/Overview/89904

Sorry, I don't believe the bloodwork exists for the newly discovered heart autoantibodies.

The antibodies to the nerves are these ones:

http://edrv.endojour...bstracts/OR48-1

And of course the ACHR nicotionic antibodies found in 10-25% of POTS patients (which mayo does test for.)

I'm currently in the process of getting referred to Mayo Rochester. We were talking about going there and speaking hypothetically if the blood tests for those autoantibodies did exist, which they may very well exist by the time I get to Mayo as it's going to be a few months.

I think what she said was reasonable, she has done IVIG on patients with AAG as she's trained at Southwestern with Dr. Vernino. She said she's had about half her patients improve with IVIG that she's done this to, but it's a small pool of patients and they were quite more sick than I was. She said IVIG would be difficult if not impossible to approve through insurance and it is very expensive to continue with a long term treatment. Steroids can also be used, but she would need the bloodwork to indicate that it is even autoimmune and in addition long term steroid use is not all that great either. So even though others have improved with steroids, it might be something that can only be a short term therapy.

As for other biologics, they might have a place in POTS treatment, but they're so expensive that we might have to wait for a clinical trial to open up to fund it. I've looked and currently there are no clinical trials employing immunomodulation for POTS. However, I emailed the authors of the heart study from Mayo and they transferred my question to other physicians at Mayo and I will try to find out if there are clinical trials opening up. Hopefully there will be some when I go up to Mayo.

Overall she answered my questions very well and made an honest effort to help me out. She herself was on Florinef for another reason and told me of its safety profile and got me on a lower dose.

It's just refreshing to have someone with experience to talk to. It's the worst feeling when I ask a POTS question to another doctor and get the dumbfounded, "huh" expression.

I especially like how she said, "What were you doing with a cardiologist? There are no cardiologists in Austin who treat POTS, This is in neurology's field."

She knows what's up.

Is this the new neuro that you were kinda doubting would be familiar with POTS, but turns out she is? That's good if that's the case. I'm not clear on what you're saying... if the bloodwork comes back positive for what? And what kind of immunosupression is she talking about... like Prednisone or something?

Yes actually this doctor is well versed in POTS, she's read many of the studies and seen quite a lot of patients so I'm pleasantly surprised. The bloodwork we were talking about would be the mayo clinic heart autoantibodies as well as the alpha/beta receptor antibodies and achr antiganglionic antibodies associated with POTS. The type of immunosuppression was IVIG/steroids.

I'm currently going to try florinef again this time just taking it 3 days of the week.

But I was talking with my new neurologist who's experienced with POTS patients. She said that she would consider immunosuppression if my bloodwork comes back

positive and the specialists advise immunosuppression, but that she feels the side effects of immunosuppression can outweigh the severity of POTS.

I'm not familiar with immunosuppressant drugs, so I don't know the severity of their side effects. I think for some immuno-modulators like IVIG, the side effects can be short lived and not too intense, but they can certainly vary. Of course if one gets an infection that could have serious complications.

I guess any kind of discussion like this would have to accurately measure side effect vs symptoms without treatment.

But basically what I took from the conversation is that POTS may very well be an autoimmune disorder, but that doesn't necessarily mean they'll treat the autoimmunity.

Hi everyone, I'd like to remind you of this part of the forum rules:

Soliciting

DINET does not allow advertisement. This includes, but is not limited to, medical studies, other organizations, products, businesses, websites and forums. If you are a researcher who would like to advertise your medical study, please contact DINET. Use of our forum signifies that you agree not to use any services provided on DINET's website or forum to solicit others.

So if you want to share info on a study please keep it private (via pm's). Although it might sound a bit harsh ( I know we are all looking for answers that can be provided by taking part in medical studies) but we had to imply this rule after a negative experience we had in the past.

Thanks for understanding!

Wait what? So can we no longer post links to medical studies we're talking about?

Well according to drugs interaction website, there doesn't seem to be interactions listed. Florinef and Prednisone target different receptors. http://en.wikipedia.org/wiki/Glucocorticoid

As you can see in that wikipedia article, Florinef has more than 200 times more affinity to the mineral receptors than Prednisone. It also has 5 times the affinity for gluco-receptors, but

the dosage is so small (.025 mg) that this is negligible. However there is no denying that there will be additive effects, and realistically this is something you should ask an expert pharmacist about.

Call around different pharmacies, they give you free advice.

You will note that in most of the studies looking at autoantibodies in pots the levels of titers are only just minutely over normal, suggesting that if anything its more likely an epiphenonema rather than pathophysiological.

For those with the ACHR POTS, it was noted in a case study that disease activity was correlated with ACHR titer. I do think inflammation is important in POTS in the sense of an overall immune mediated reaction, whether the specific autoantibodies are important or not I don't know as there are perhaps other autoantibodies now being shown associated with POTS. However, given that people's experience on this board with Prednisone or hydrocortisone has been good (minus the side effects) I'm liking the evidence for autoimmune pathophysiology.

For the people posting about success with steroid shots - what shots were you using?

With the recent study about autoantibodies being spotted in POTS patients, I was wondering if anyone else has anything to add to this.

Hello dear Dinet people,

I am deeply impressed with your collective intelligence!

When I was first diagnosed with POTS three years ago, I made a little tentative toe-dip into the world of dinet. I didn't stay long back then. I was more than a little overwhelmed by the easy way everyone seemed to toss tricky medical terminology around. You all know so much about so many complex things! I didn't want to have POTS and I figured I mustn't ...simply because I couldn't understand it, so I thought if I ignored it and left the forum it might go away. Ha.

I am back. Things have progressed with my delightful body but this delightful brain is still not progressing into an easy understand of all things dysautonomia.

Since I was last here there seems to be more chat about auto immune stuff and something called mast cells. Some people are into vitamin D and lots of you have Sjrogen's. These things are all new concepts to me. And I still don't understand how it works together.

I have learned a couple of new (and useful) terms for the joys my tummy brings me every time I eat. Gastroparesis and intestinal dysmotility. And the lovely urinary retention. So I have my head around these things...

but OH MY! You all know so MUCH about different tests and what they mean, all the jargon. Blows my little foggy brain off into the wild blue yonder!

Please can you help me, medico-moguls of the potsy/dysautomic planet we call home?

I need a kind of a 'cheat sheet' explanation of the new things above. Preferably in normal English.

And I want to know if there is anyone like me? Pretty please?

I am in New Zealand. It's beautiful here(!) but very isolated from any expertise in autonomic problems.

I had asystole on the TTT and they put in a rate-drop pacemaker to stop my heart from stopping and prevent me from fainting. No one else here seems to have this...?

Apart from the dizzy/ foggy/ headachey/ exhausted stuff, I have autonomic dysfunction of the stomach, bowel and bladder (not pretty stuff and I won't give you the ugly details!). I have problems with my eyes (focal spasm and a permanent flickery disturbance in the vision on the right). My throat hurts every night and feels dry as a bone, even though I am drinking water like a fish. After a recent stay in hospital for the tummy stupidities, I saw a neurologist who said I don't have POTS but 'pandysautonomia'. I have a lovely general physician who is trying to find some things out for me...

So although I would like to run away again, I think you guys might be just the sort of people who can help me to understand what is going on with me! Are any of you like this? Can any of you volunteer to be a guide?

From the impatient patient,

Rachel

The symptoms you reported are consistent with other POTS sufferer's experiences including my own. For me, the nausea and vomiting subsided some years ago, but I still have the headaches and presyncope.

To summarize, there are some fundamental theories as to what causes POTS.

Dr. Stewart advanced the idea of high levels of angiotensin ii on the assumption that an overactive sympathetic nervous system tends to produce high levels of angiotensin ii. However, the flaw with this theory is that only a few of his POTS patients exhibited measurably high levels of angiotensin ii, and losartan (which is an angiotensin ii blocker) does not seem to be a gold standard for treating POTS.

Dr. Levine advanced the idea that a small heart size is responsible for producing POTS. The flaw with this theory is that POTS seems to strike later in life, and is not typically seen present at birth or earliest childhood years. Additionally many people with POTS have a normal stroke volume and heart size as measured by other studies.

Dr. Bayles advanced the idea that reduced levels of norepinephrine transporter protein is responsible for POTS. This has the most evidence as studies have shown that blocking NET (norepinephrine transporter) in healthy controls produces POTS in them (That is, they get the rise in heart rate upon standing.) But he did not advance an idea as to what causes this reduced NET. He did rule out mutations as well as methylation. He suggested perhaps a cytokine/inflammatory role.

A recent study out of the Mayo Clinic identified autoantibodies to the heart in POTS patients. This might be the underlying cause of the disease.

POTS seems to follow a lot of the same traits of other autoimmune illnesses. It has a higher incidence in women (who are more predisposed to autoimmune illness). It has a flare up/remission cycle in some patients (similar to other autoimmune illnesses) and it's triggered often by febrile illness or pregnancy (similar to other autoimmune illnesses).

Well, the docs at Mayo who are treating MCAS are immunology and allergist. They are working closely with neurology. So, it's a team approach. The immunologist/allergy doc at Mayo is the one who did the IGG, IGM and IGE testing and determined autoimmune dysfunction. They also test things like pneumonia and do challenges (if you let them --I won't do the vaccine) to see if your body will respond properly and start making antibodies and have a proper response. If not then they would proceed with Hypogammaglobulin type treatments --usually IVIG or plasmapheresis. You can ask Arizona Girl about both of these --cause she has done them.

But, where there is over abundance of antibodies and you test positive to say --Lupus. A rheumatologist - actually treats that. He/she would also treat sojourns. So, it depends on what the problem is. If it's a thyroid antibody issue - an endocrinologist treats that. What ever organ is being affected ---that type doc. would oversee the care. Even though ---obviously ----there is a whole body dysfunction ---we are still separated into body parts and that's who we have to see for whatever ails us.

Issie

Ya that's what I was thinking as well, I did a preliminary talk with my cardiologist's nurse, and she said that an immunologist would treat that and that the role of the cardiologist would be to oversee the structural integrity of the heart. I told her to forward the question to the cardiologist. I'll see what he says, however from his first message, he basically told me to go to mayo so I'm going to guess his answer would be not cardiologists.

I will admit I have not looked too much into Mast Cell yet, however one fundamental flaw with that theory is that it seems that MCAS presents with fluctuating intensity. There are flares as well as remissions, and these flares seem to be provoked by environmental stimuli. For myself, my symptoms are constant, and do not seem to be exacerbated by allergenic substances. Could there be a connection between mast cells and cytokines? Certainly, but I don't believe we'd be able to get more specific than just using the word, inflammation - which isn't helpful. Inflammation is probably the key and of course the obvious question what is causing the chronic inflammation.

I'll have to read more into autoantibodies and autoimmune illness in general. I posed an interesting question to my cardiologist - if this does turn out to be important in POTS, what specialty would treat it? Immunology or Cardiology? Autoantibodies attacking the heart. That's a tough one.

In neurology, it's predominately neurologists who treat MS, despite it being an autoimmune disorder. So it will be interesting to see what college of medicine takes it up.

Jangle, Hope you find your Dr. House. In the mean time you are educating yourself and ruling out other issues. It may feel like you're making no headway ---but, you are. For everything that is not found wrong ---brings us closer to what IS wrong.

One thing you might take a closer look at is MCAS. Dr. Goodman is treating us "hard to figure out" cases with the protocol for that. He has added GastroCrom to our list of meds. And Allegra and Pepcid. He wants us to also add a full strength aspirin. This is my first week on it, (and it's at a lower dose then RX'd - having to build up). So, here's hoping that those of us on it will find some relief and that it works for us all. I know of 4 people this week that he RX'd this to. I will keep people posted on my response. So far, so good. I am having some side effects --but, was told I would and it should settle out in a few weeks. The full effects should be noticed by 6 weeks.

You know, I have low IGG in the subset 1, and I've had positive antibody test in two areas. This is the direction that is being taken with me. Of course, I also, already knew that I had MCAS. Was doing the H1 and H2's but, adding the GastroCrom hopefully, will be the missing link. It is supposed to help with inflammation, and allergies. I can already tell that I'm not hurting as bad. I also was able to walk on my eliptical today - without too much trouble, and when I got off - checked my bp and hr and it was near normal. Yayyyyyy!!! Amazing.

Hang In There! Docs are starting to try some other things and hopefully, we will hit on the recipe that is successful.

Issie

Issie, I read the data from this article, the way the data supplement made it seem - everyone with POTS has autoantibodies. Whether they show up on other tests or not is becoming less relevant. I myself do have a positive ANA, but I believe these auto antibodies are specific to cardiac tissue, and so are not typically targeted by conventional blood tests.

Usually it's the insurance company wanting to save money by having you talk to one of their nurses in an effort to organize your treatment plan so as to attempt to cut down on doctors visits.

You can't be dropped due to overuse.

I purchased the full text of this article, however it didn't really give any more details than the abstract which was disappointing. I sent the abstract to my cardiologist who then told me to go to Mayo clinic.

I'm going to see what my new neurologist says, but if it does just come around back to "go to Mayo" then I'm probably going to be waiting quite a while before I get anything going on this front.

Where is my Dr. House?

It's a symptom of a malfunctioning medical system. Not just tertiary care, which for POTS patients means >6 months to get into POTS specialists but even for regular specialists it's quite a wait.

Case in point, I booked for the first available for my neurologist on Sept 14, and I'm not getting in until Oct 11. So even though I've waited so long, I still have like 2 weeks before I'll get in.

I dislike waiting.

I have been swelling very bad latley so I stopped Florinef since that's a side effect. Well today I seriously feel worse than I have in a long time. I'm so dizzy, can't sit up for long periods of time, nausea. And high bp with bradycardia which is wierd that I keep having this because I never had before. I was on such a tiny dose of Floinef one time a day that I thought I would be ok not tapering it off.

Ya I remember a more pronounced form of my symptoms followed by excessively going to the bathroom when I stopped Florinef. You should feel back to normal soon.

diamond, I made the appointment to see that neurologist, but it takes a month to get in, so I'm still waiting.

Diamond,,, I to have such delayed reactions to exercise also, before I had this flare I would exercise in the morning and be fine until late afternoon or evening then I would be so sick, I tried to explain this to several doctors and they said there was noway that was possible and it couldn't be from the exercising. It didn't happen when I didn't exercise and I knew it was form that. Any ideas what causes that??t

Ask your doctor, as it could be an increase in cytokines after exercise. http://jp.physoc.org.../3/949.full.pdf

It's well known that exercise will lead to a substantial transient increase in both inflammatory and non inflammatory cytokines. The logical leap is that in POTS and CFS patients who might already be undergoing an autoimmune disorder, this increase is sufficient to increase symptoms substantially, or perhaps the rise is even more dramatic in these patient populations.

Just a theory.

"Since POTS will make you look crazy."

Oh gosh, I hope that doesn't mean POTS is being viewed as negatively as fibromyalgia. I don't want to open that conversation, but frankly people with fibro are screwed because the majority of the medical community sees them as crazy and/or latent munchausens/attention seekers. Which means little funding for research and little healthcare for them.

I was optimistic when my cardiologist gave his unsolicited opinion, "Fibro is fake, POTS is real" so I was thinking that doctors are at least willing to say that POTS is a physical illness, but I hope hope hope hope hope that it's not starting to roll into psychogenic territory. Because once that's established, like as in Fibro - it won't go away easily. I mean it MIGHT with CFS, but I don't think CFS ever got as bad a rep as Fibro did. You can read on doctor's twitters/blogs, it's a running joke about fibro patients. It scares me honestly.

Anyways, welcome to the forum, there is quite a resource of knowledge here, and although there are still many answers left to discover, it does seem that lately there's been a lot of meaningful research being published.

So if the class of autoimmune antibodies are IgG, then what treatments are available? I see IVIG treatments has had some limited success, but I've been looking around the internet and am having trouble locating IgG treatments. Probably something for an immunologist to answer.

Jangle do you have a link to that autoimmune study?

http://www.ncbi.nlm.nih.gov/pubmed/23002038

I'm going to go to campus so I can get the full article.

Jangle, how do you find these articles? I wonder if my endurance training background is why I tolerate my NE levels in the 2000, because I am desensitized to the vasoconstricting effects? Even with my NE levels that high I don't have " panic attacks", or palpitations, clammy skin or high HR. My HR runs in the 40's, my BP 90/60. I just started a low dose of Clonidine along with my salt and fluid, and have been walking everyday for the past month despite feeling like death. So what would do the opposite of a NET?

I have my ways, but it appears I was beaten to the most exciting POTS research to come out - which was the autoimmunity study just published this week.

well, it is true that the population size is small, however, this is further evidence that autoimmunity is implicated with POTS, which has been my major suspicion since this past July. This study will help me IMMENSELY in securing doctors on my side to pursue the autoimmune pathway.

Interesting. I'd write more, but I gtg to work.

It is new though, it says it was published sept 24