jangle

Fludrocortisone + volume loading (salt water)

Well contrary to my thead title I've actually found fludrocortisone + volume loading to be quite effective in ameliorating symptoms. I'd like to up the dosage of fludrocortisone, but finding a doctor to do that is proving to be quite challenging.

Exercise has its role, it takes time and a lot of commitment, and is heavily dependent on your current state of health. I would say when I was running 5-6 miles per day I was feeling about as good as I'm feeling on .1 mg/d of fludro. Maybe a little bit better. I really need to start exercising again.

My experience was a lot like Leigh8's. I would suggest inquiring on getting your son lecture notes provided by the university as it can be difficult to pay attention during lectures. Also I would advise laying low on the alcohol even though there is tremendous temptation to abuse it during the party years. As for the dorm living, I'm not sure if I would have been able to handle that constant activity level especially if it was disrupting sleep. A good alternative would be to live off campus with room mates who're considerate to your son's needs. That way he's not isolated but he's not bothered either. I personally did the off campus apartment route which was nice for me.

It takes a while for the body's blood volume to adjust. I don't have any data for this but just my experience. It literally took 5 weeks on Florinef and salt + water loading before I felt a difference. For some people it takes even longer. IV saline works so well because it directly forces the body's blood volume up very quickly. Whereas the body has other compensatory mechanisms for dishing ingested low amounts of fluids elsewhere. Why this is I don't know. Just a theory.

I corresponded with a Mayo Clinic doctor (who does a lot of research with dysautonomia conditions) via email about the lightheadedness associated with POTS and I got a reply that POTS patients usually maintain perfusion despite a tendency for some to have syncope. I don't really want to say the name as I'm not sure they'd want it published.

Now I really wish this was an issue that would be rigorously studied. Yes there are studies (which I don't have the time to find) that measured cerebral blood flow in POTS patients supine and tilted and found that they had the same levels as control patients, but then there has been some conflicting studies as well.

I didn't ask what evidence she has to suggest that perfusion is maintained in POTS patients, but I assume she might have more access to fMRI results and/or SPECT results.

In any event, seeing as to how lightheadedness and reduced concentration are some of the major problems for POTS patients, it seems like using SPECT or some type of blood flow imaging modality would be integral to understanding what is going on.

They help my heart rate, and do seem to make a slight impact on my symptoms, they do reduce my lightheadedness and anxiety symptoms. But really the difference between taking them and not taking them is not that great. It might just be placebo effect to be honest.

Last year I saw an EP doc who said, "if your BP and HR are fine, you have nothing to worry about.". This is the same guy who said, "POTS is just a nuisance and not a serious condition." This guy has a daughter w Neurocardiogenic Syncope and is known in my town by many as the go to doc for autonomic dysfunction. Needless to say that was my last visit with him. But I am reminded of that cardiologist as I read this abstract. And hope that someday he reads this or other research that makes this point.

This is excellent clinical evidence that the cardiac issues we have are secondary to our underlying problems which involve dysfunction of the nervous system by one mechanism or another, although we all really knew that to begin with. (Involvement of NO is unclear here.) It proves the local doc's words wrong and points out why cardiologists are not equipped, for the most part- unless specially trained in autonomic dysfunction- to deal w folks like us. The cardiac issues we have are secondary We can be extremely symptomatic with or without Hemodynamic change. And, because cardiology is light years ahead of neurology in terms of it's development and ability to assess, diagnose and treat patients- there we all are stuck in the middle of two schools of science with one saying, "It's not a heart issue" and the other saying, "we don't know enough yet about the nervous system to really understand it."

Keep in mind though what your cardiologist said was extremely insensitive, you have to have the perspective they have. They see people with conditions that are literally killing them, though it's still no excuse to have empathy lacking.

http://www.ncbi.nlm....pubmed/23283362

To the ones that understand all the nitric oxide business, what are your thoughts?

yay a study that says something is normal in us!

Well I'm still going through it, but here's my experience so far.

I believe I'm in the hyperadrenergic subtype, but I've never been formally diagnosed. My blood pressure usually elevates upon standing and it's in the normal - prehypertensive range, but has been known to go hypertensive in conditions of stress.

I started at .1 mg/d and that's the dose I'm on now. I load with about 2-3 glasses of salt water a day in addition to what I normally drink.

In the first few weeks I noticed some mild improvement, but that just might have been me thinking it.

Now well into my 5th week on this dose I'm noticing my lightheadedness significantly decrease, it's definitely not me just imagining it. I feel my headaches have decreased as well. Overall I'd say I've made a noticeable improvement.

I still would like to improve from this point, but right now my symptoms are considered mild. I'm thinking about just trying aerobic exercise to see if I can get that last bit of improvement rather than upping the dose.

If I were to increase the dosage from here, it would probably be to .15 mg and not the full .2 mg.

Jangle you seem to know a lot about POTS. I was wondering what you think about blood volume and POTS. Do you most people with POTS, even the hyperadrenergic variant, have low blood volume?

I'm wondering if I have it and if increasing volume could help me. Sadly there doesn't seem to be a way to test for this which is a pity. I guess I'll just have to ask my doctor if they think it'd be worth a shot.

Btw when you say your blood pressure was prehypertensive what range is this exactly? Also was that before or now?

Prehypertensive range is the top number being between 120-139 mmHg.

Hyperadrenergic activity most likely has a correlation with disrupting the RAAS (Renin angiotensin aldosterone system), which are a set of hormones with many different and complex interactions and effects.

It's difficult to understand exactly what's going on, but I can conceive that this disruption could lead to decreased blood volume among other things.

It's difficult to generalize with POTS population because there can be many different things going wrong that end with relatively the same set of symptomalogy. For people with EDS, neuropathic denervation, MS, or autoimmune ACHR, it's probably less likely (though not impossible) that the lightheadedness stems from just low blood volume, with the context being a larger global vascular dysfunction (EDS the presence of weakened venuous return, neuropathic denervation leading to inadequate venuous return to the heart, and autoimmune causing all kinds of ***-ness)

However, the data presented is that IV saline is effective for a wide variety of POTS patients and whether this is because it is correcting some central deficit or it's boosting a compensatory mechanism to combat an inadequacy elsewhere is difficult to say. In the end one should aim for symptomatic improvement and by methods of Florinef which is a relatively safe medication that achieves the same effects of IV saline, is probably a good first line treatment for POTS.

Well I'm still going through it, but here's my experience so far.

I believe I'm in the hyperadrenergic subtype, but I've never been formally diagnosed. My blood pressure usually elevates upon standing and it's in the normal - prehypertensive range, but has been known to go hypertensive in conditions of stress.

I started at .1 mg/d and that's the dose I'm on now. I load with about 2-3 glasses of salt water a day in addition to what I normally drink.

In the first few weeks I noticed some mild improvement, but that just might have been me thinking it.

Now well into my 5th week on this dose I'm noticing my lightheadedness significantly decrease, it's definitely not me just imagining it. I feel my headaches have decreased as well. Overall I'd say I've made a noticeable improvement.

I still would like to improve from this point, but right now my symptoms are considered mild. I'm thinking about just trying aerobic exercise to see if I can get that last bit of improvement rather than upping the dose.

Seattle, the person you're referring to was TXPOTS - she began with volume expanders and then began an exercise regiment where she slowly increased her jogging distance and eventually added additional exercises such as weight lifting and the stair master. It took her 18 months of this regiment before she was finally un-diagnosed with POTS and described as symptom free. I spoke with her personally and she stated the last type of exercise she added before become symptom free was the stair master.

Earlier this year I began an endurance exercise regiment for about 3 months and I was feeling noticeably better, however I had to stop due to life obligations and have only now started running again and adding weight lifting. Exercise training has so many beneficial health impacts it's difficult to attribute which pathway is helping the POTS the most, however it does appear that consistency is key as once you stop exercising, often the POTS returns back to its usual intensity suggesting a hormonal etiology.

My son initially was on .2 mg daily when he was 14. It worked really well and the doctors thought a lower dose on him might have been as effective, so we took him down to .05 and he was getting dizzy. We found the perfect dose for him was .1 mg, but .2 mg didn't hurt him. After being on it for 2.5 years with no dizziness he was taken off it and the dizziness has not been much of an issue since.

When your son was on the Florinef did he increase his salt+water intake as well? Is he still maintaining the high salt + water?

That's great, Jangle! I hope it continues for you

Thanks, unfortunately today I'm back to the same old lightheadedness. I'm probably going to need .2

Think it's kicking in even more for me.

I feel my lightheadedness dissipating considerably, it's like a feeling of slowly immersing oneself into a hot jacuzzi.

I'm still somewhat lightheaded, but this is definitely helping me.

I found that the florinef did work better over time for me. Also, I don't think you can compare fludrocortisone and prednisone. Prednisone is completely glucocorticoid but fludrocortisone is small part glucocorticoid but mostly mineralocorticoid which works differently on your adrenals (amongst other things).

I didn't make clear what I was comparing. In the instances of diabetes and other heinous side effects induced by steroids, this is generally attributed to happen through the glucocorticoid activity. I was comparing these two dosages.

.2 mg Florinef has 1/12 the glucocorticoid activity as 5 mg prednisone which is already a low dose of prednisone.

I've seen some reviews of fludrocortisone that seem to indicate that it's effects take hold predominately around 6-12 month period, so that might be what you're experiencing as well. Makes me wonder if I should just stake out at .1 mg and see how I do over time. I'm not really getting any side effects/edema at this level.

My neurologist is rather conservative and is reluctant to increase the dosage of Florinef from .1 to .2 per day. She's afraid of the corticosteroid effects of Florinef, however I've calculated it and .2 mg of Florinef would be equivalent to 1/12 the corticosteroid activity of 5 mg prednisone - the lowest dosage of prednisone. Symptoms of diabetes etc from corticosteroids aren't typically seen until one gets to the higher dosages of prednisone, like >30 mg.

But anyway, even on this .1 mg/d I've noticed that I'm getting more improvement as time goes on. It's now my 5th week on the medication and I'm better symptomatically then I was in the beginning. I'm keeping relatively the same water + salt intake.

I was wondering if other people noticed the same thing with Florinef? Why is there a time delay? It's not like I'm getting additional aldosterone hormone. I wonder if the body is adjusting to higher and higher blood volume.

I don't see how laser eye surgery could excarbate an autoimmune illness? Not saying its impossible I just don't see the link.

I say go for it and happy holidays

I would say to focus on the parts of your life that makes you happy, especially during the times you get where you feel normal. Additionally, it is absolutely essential that you get the correct medical support team, the therapist who makes you inhibited to share your struggles is the type of person you need to stray away from. I'm not familiar with autonomic crises, but I'm pretty sure if you're having one you need to be able to tell someone not just as a matter of support but as a matter of health. This extends to your medical team, which I hope you're able to get some very good quality researchers/clinicians who're involved with the cutting edge treatments.

Despite it being listed as a conservative treatment option, endurance aerobic exercise is a powerful tool to use in alleviating symptoms. If you are well enough you might want to consider trying to incorporate daily aerobic conditioning.

I'm sorry to hear the IV fluids hasn't been as effective lately, I would still say that giving fludrocortisone another try might have some benefits. I know for me it has helped my lightheadedness at a rather low dose of .1 mg/d. I might try to go from here with exercise and see where that takes me.

Going to vanderbilt is never a bad idea, they might be able to run additional autonomic functioning tests as well as more sophisticated tests like measuring your blood volume in order to determine more specific treatments.

I've not tried IV saline but florinef is definitely helping me. Currently I'm on .1 mg/d. I'm going to try .2 mg/d as I haven't gotten edema or anything like that.

IV Saline is pretty innocuous, it's just a hassle to put in and out all the time. There is some chance of pretty serious adverse effects, but with the bags they use nowadays and the techniques it should be safe.

I kind of want to try it, but I'm going the florinef route as it would cost me quite a lot of money to go to the ER and then not know if they'll actually give it to me.

i was told that POTs was first picked up on after the first world war, when men came back demonstrating strange HR and BP patterns. It was given a name back then which i forget now, but it wasnt pots. Must have been the trauma and chemical exposure back then.

Presumably at least some of the patients who fell under the term "Da Costa's Syndrome" had what we now call POTS. That was back in the civil war era, but in world war I, a few british physicians termed a syndrome known as "soldier's heart" whose symptoms closely mirror that of POTS too and perhaps even CFS patients.

I'm not sure as I haven't really experienced a remission since I've gotten this. I find this oscillatory pattern in others most interesting and it does give me hope for an eventual recovery.

I think any answer to your question is going to be highly individualistic. Has there been anything recent happen in terms of stress or other significant events that could have triggered this relapse? How has your sleep pattern been lately? Possibly eliminating any excess stress and/or correcting your sleep pattern could be all it takes.

My guess would be to begin an aerobic exercise program, from what I've read this has helped speed recovery.

Yes - my blood pressure was pretty much normal before I started taking Losartan - around 120 or so. After Losartan it'd gone into the 110s. I also take Florinef which boosts my blood pressure.

Other than the blood pressure drop (which was the original intent of losartan) I don't get any other side effects. As for the TNF blockers - I presume they're going to lead to more symptomatology

I would say that one should ask their doctor about increasing the dosage of Florinef and ask about taking in salt water.

IVs are not without risk in fact, they can be quite dangerous not to mention time consuming.

Florinef will accomplish the same task but in a much more manageble way.

I'm currently on .1 mg. I notice if I take in about 3 glasses of physiologic water (concentration of salt mixed with water) it relieves my lightheadedness for a little while (before I pee it out again).

I'm going to be titrating this up to .2 mg