TXPOTS

Hi Reen,

I have even been to my son's soccer games mid-day in September with no issues. By then, I am well acclimated after much time outdoors. So, I don't really put a limit based on the heat index. I go more with how I am feeling. I am always with family and just retreat back to the car or house if I don't feel well. I do have to be sitting, and there are days when I am just not up to being in the heat. You know, I kind of get used to the oven blast when going from AC to heat wave. That's just me though. Other POTSies may be totally different.

To answer this question: Has anyone been able to acclimatize themselves to heat by gradually exposing themselves to the elements?

YES.

I live in Houston, Texas. I've had POTS symptoms since May 2008. It starts getting uncomfortably hot here in either April or May, depending on the year. With the first wave of heat and humidity, I feel very poorly. I jog outside most mornings and when the heat starts moving back in, I notice a flare in my symptoms, and my exercise tolerance greatly diminishes. I keep at my routine and eventually my body does seem to acclimate to the heat. I return to my normal POTSy self and recover from the heat shocked POTS flare. I find that it takes at least a month to adjust. I don't completely avoid the heat because it is impossible to in Texas, and I have two children that participate in outdoor sports. I just make sure to keep an eye on my pulse and don't push too hard until I get acclimated. Very good question.

Headaches and nausea are common side effects from birth control pills, even in non-POTSies. When I was working, I used to counsel patients to take the pill with an evening meal or shortly before bed if headaches or nausea were bothersome.

The Florinef can make some people feel wired and cause insomnia. I take it first thing in the morning due to this side effect. Other people find mornings easier if they take it before bed. You'll have to see how it makes you feel. You can also cut the tablet in halves and even fourths. Some people find the Florinef gives them headaches and high blood pressure when the dose if too high. Florinef can take 2-3 weeks to build in your system. It is not uncommon to have to fiddle around with the dose until you find the right dose for you.

Well, just to give you an idea of another random POTSy.....

During my first tilt, my heart went from 85 to 175 bpm in 6 minutes. Then, they had to put me down. I was deconditioned during this tilt.

During the second tilt, my heart went from 65 to 140 bpm in 10 minutes before I started removing the straps myself. I don't last long on these tilts and won't be doing anymore. I was in great physical shape at the time of this tilt.

At home, my heart rate never gets above 100 bpm when upright because I am moving around. The tilt really induces my POTS. Although I am still not cured of POTS, exercise has been a tremendous help. It has greatly improved my quality of life by giving me more energy and increasing my upright time significantly. Can your pediatrician give you a referral to an exercise physiologist or someone who can put together an exercise program tailored to your needs? Even with the crazy heart rates on the tilt, my heart never exceeds 170 pm, even after a 6 mile jog. I think exercise can only help, as long as you get the clear from your health team. Good luck!

Firewatcher, Very interesting indeed... Good point!

Radiofan,

My story is similar to yours. I was an athlete all my life. My troubles started the 3rd Saturday in May 2008, as I was exiting the swimming pool after a rigorous work-out. I thought you may find this article and some of the articles referenced interesting. At first, I stopped my exercise and became bedridden. I am doing much better after restarting my exercise program and am back to a high level of fitness, though I still am debilitated with POTS. I believe I was pre-disposed to POTS based on my fitness level at the time and probably being a pre-menopausal, Caucasian female.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2343225/

35 year old Caucasian woman (1/2 Polish, 1/4 English, and 1/4 Scottish).

This is off topic, but I have read studies that suggest extremely fit individuals tend to have lower orthostatic tolerance. I have always been very fit and athletic, and it seems many of my new POTS friends were the same when POTS hit. I wonder if this is a predisposing factor, as well as race and gender.

Great article. I had not read that one yet, so thanks for posting.

I didn't have any problems with the size of the print. It appears large on my end. ?

Just my personal experience...

I take 0.125mg in the am and 0.25mg in the pm. It helps me sleep at night and has stopped the annoying tremors I developed at the onset of POTS. I would not be taking it if it were not benefiting me in some way due to physical dependence that occurs with benzos. I have been on Klonopin for a year and a half, and it has not re-set my nervous system. I would like to eventually taper off Klonopin completely if my symptoms improve with time. However, a good night sleep is most important.

You guys are not alone!!!

Brye, I was doing that constantly, so I purchased a weekly pill box. It's been a lifesaver. That's a good idea on your part. I use one of those magnetic safety locks.

I'm a pharmacist (not working), so if I can screw it up, anyone can.

I'm with you. My hemoglobin has been in the 16 g/dl range. This was even pre-POTS. I have no idea what the cause is, but I like the theory of compensatory reaction due to poor tissue perfusion. My physician thought it was hemoconcentration. My hemoglobin has been lower the last 2 times it has been tested (14.9 g/dl), so maybe the volume expansion has had an effect. An EPO level would be interesting. I have thought about asking my endo for this lab.

Hi Sarah,

This is a lengthy read, but it's everything one would want to know about how fish oil may work in the body. See Table 1. The general consensus is that fish oil may thin the blood by decreasing platelet clumping and increasing break down of fibrin. This effect is most pronounced in doses over 3gm. One should ask their physician in guidance on dosing, but the usual recommended dose is under 3 gm/day.

http://circ.ahajournals.org/cgi/content/full/106/21/2747#TBL1

I found this very interesting as well:

Goode et al86 showed that acetylcholine-stimulated relaxation of small arteries taken from hypercholesterolemic patients was significantly improved after three months of supplementation with 3 g/d of EPA+DHA. Fish oil feeding has also been shown to improve endothelial function (reviewed by Chin and Dart87) and to increase arterial compliance.88 These effects may be secondary to fish oil?s ability to enhance nitric oxide production89 and may be the mechanism by which fish oil elicits a small hypotensive effect.

I have read that Ibuprofen is a vasoconstrictor. The Mayo clinic told me to take an Ibuprofen before exercise because of that.

Well now I'm confused. LOL Did Mayo tell you the reasoning behind taking it? Did they give you a limit for how long or how often? Very interesting as this is the first time I've heard any talk of advil, but if Mayo is suggesting it then maybe it's not such an "unknown" thing. thanks

You can also go to the medication section here on dinet and check under Motrin for more information and links to studies. As I mentioned before, Ibuprofen increases sodium absorption and decreases prostaglandin production. Prostaglandins are potent vasodilators.This is the reason for taking it in conditions such as orthostatic hypotension. Ibuprofen is more likely to increase blood pressure. Ibuprofen, as well as aspirin, have antiplatelet effects which may thin the blood. In patients with atherosclerosis and other conditions that increase the risk of blood cots, drugs like ibuprofen may open up the coronary arteries. This is probably what the wiki article was referring to.

TXPOTS--I am in a new round of testing with a new cardio, neuro and endo. I went to Houston to have new doctors get "fresh" look at my situation. I will be going back and forth for various testing for the next 3 weeks or so. I got a good feeling, like the new doctors were really going to think it through, which is ALL I have ever expected from any doctor. Unfortunately, up until now, I had never found any that would "think" of the various possibilities.

We do seem to have a similar course. Please keep me updated on what you are going through and finding out.

And Lenna, sorry I got off topic!

Sue,

I am in Houston, so I would love to hear how it goes. I love my endocrinologist, but I have not found a local cardiologist and neurologist. I would love your recommendations if things go well.

Sorry, as well, Lenna and Ashelton for getting off topic.

Here is one reference; it's wikipedia, which I know isn't always reliable...but I've read it on other sites as well.

http://en.wikipedia.org/wiki/Ibuprofen

Ibuprofen (INN) (pronounced /ˈaɪbjuːproʊfɛn/ or /aɪbjuːˈproʊfən/; from the now-outdated nomenclature iso-butyl-propanoic-phenolic acid) is a non-steroidal anti-inflammatory drug (NSAID) originally marketed as Brufen, and since then under various other trademarks (see availability section), most notably Nurofen, Advil, and Motrin. It is used for relief of symptoms of arthritis, primary dysmenorrhea, fever, and as an analgesic, especially where there is an inflammatory component. Ibuprofen is known to have an antiplatelet effect, though it is relatively mild and short-lived when compared with that of aspirin or other better-known antiplatelet drugs. Ibuprofen also generally acts as a vasodilator, having been shown to dilate coronary arteries and some other blood vessels. Ibuprofen is a core medicine in the World Health Organization's "Essential Drugs List", which is a list of minimum medical needs for a basic health care system.[1]

I think that may be a study on rabbit hearts? It's probably the same concept though as aspirin being given for a heart attack. I'm curious what the mechanism is if it is not the anti-platelet properties. I'll have to do some digging. I don't see a direct reference to that assertion, but I found an article on rabbit hearts and coronary dilation. I'm a pharmacist by profession and generally think of ibuprofen as a drug that raises blood pressure, so I'm interested in this.

Where's the reference for ibuprofen as a vasodilator? Didn't see that, though I did notice a reference for an off label use in orthostatic hypotension.

It is used in caution in patients with uncontrolled hypertension due to the risk of increasing blood pressure due to sodium retaining properties. Prostaglandins, which ibuprofen inhibit production of, are potent local vasodilators. So, we are inhibiting this response locally. Ibuprofen may increase blood flow due to temporary inhibition of platelet function. I would not consider the blood thinning properties synonymous with vasodilation, since the net effect of ibuprofen may be an increase in blood pressure. It is an interesting thought though. I have felt better on fish oil which can also thin the blood at a certain dose. I have been labeled as "low flow" POTS, as well as hypovolemic POTS if we put stock in the various subgroups.

Sue,

You crack me up! Any leads on the nutcracker syndrome? I follow how you are doing because our symptoms are so similar.

Thank you so much! I know a lot of medicines are trial and error with us but if I have to change to a selective BB I want to be prepared.

Very smart with a history of allergy induced asthma.

Advil can also cause sodium and fluid retention which may be helpful in some POTS patients. Of course, it is not a long term solution due to GI effects, unless recommended and monitored by a physician. You also should be aware of rebound pain which may occur when over the counter pain meds are taken regularly and then suddenly stopped.

Beta 1 selective agents in order of selectivity: Metoprolol (Lopressor®), atenolol (Tenormin®), bisoprolol (Zebeta®), and nebivolol (Bystolic®) at 5mg dose

Labetalol and carvediol are mixed alpha/ beta antagonists, as thankful mentioned. The beta portion is non-selective (beta 1 and beta 2).

Does anyone know if you can have lowflow pots without plasma renin & angiotensin problems?

I had a ttt done by dr Stewart himself & he immediately said that I had lowflow w/in minutes he knew & said "your thoracic empties rapidly" whatever that means? Anyways he sent me to have plasma renin & angiotensin 2 tests after I got back home. I went after I was home & when they were taking the blood the ladies had to look up info on how to test it & my mom started telling them what she read about it but they told her they knew what they were doing.

Anyways a few weeks later there was an email for dr Stewart saying "no abnomrality found" that's all it said & we've never heard anything again.

So I wonder two things:

1. Was I ever tested properly?

2. But more importantly- if I don't have plasma renin & angiotensin problems do I still have lowflow pots. The cuffs & monitors he put me on seemed to show it

Here is the link to one of Dr. Stewart's studies on angiotensin II. There are some graphs that break patients into the 3 groups and measure renin and aldosterone. It does NOT appear that ALL patients with Dr. Stewart's low flow POTS had low renin and aldosterone, though there is a trend. That would be a good question for Dr. Stewart. I'm one that had low renin, non-existant aldosterone, but low-normal ang II. I guess we're all different.

http://www.nymc.edu/fhp/centers/syncope/angiotensin_in_pots.htm

Hope you are doing well!

Yes, this just means that the low flow POTS patients were exclusively female in this particular study, which isn't surprising because MOST low flow POTS patients are female. But not all. Here is one of Dr. Stewarts studies, for example, that involved nine females and ONE MALE with low flow POTS. http://www.clinsci.org/cs/110/0255/1100255.pdf

My son has low flow POTS. His BMI is 5. He recently participated in a clinical study on the role of Nitric Oxide and POTS at Beth Israel Hospital in Boston. Not all of his test results are available to us yet, but the one thing we have been told is that he does indeed have low flow POTS. I'll post a thread about that when we have more information.

Great. Hope this leads your son to a treatment plan and much improvement in the future. Very best of luck.

These studies have small sample populations and obviously most POTS patients, but not all, are female. Good point, Jesse. Hopefully, the future will bring more research and insight.

Yes, I went back and reviewed the article, and Dr. Stewart mentioned a high percentage of low flow patients had high angiotensin II and this group with high angiotensin II were exclusively females and had low BMI. My understanding is that NET deficiency is very, very rare and tends to run in families. Is this true? One more question... are there are studies analyzing the NET in POTS? Could the transporter become damaged per say?

Can someone direct me to the Dr. Stewart study that says low-flow patients with high angiotensin II are exclusively female? I've scoured his studies and haven't come across that. Thanks.

Clinical Science (2007) 113, 449?457 (Printed in Great Britain) doi:10.1042/CS20070104 449

Reduced body mass index is associated with increased angiotensin II in young women with postural tachycardia syndrome

Differences in peripheral blood flow, especially in calf blood flow, allowed for a consistent classification scheme [10] that enabled us to partition patients into three groups. One group, which we denoted ?low-flow POTS?, has globally reduced blood flow in association with absolute hypovolaemia, supine tachycardia, reduced stroke volume, sympatho-excitation, blunted orthostatic vascular responses, increased plasma Ang (angiotensin) II [12] and decreased bioavailability of cutaneous NO (nitric oxide) [13]. Interestingly, all patients were female.

Justin,

If you are not feeling better and want to stop the beta blocker, please make sure to discuss a taper protocol with your physician. I know you are cutting them in halves and fourths, but you really need guidance on how much to taper and how soon. Beta blockers can cause rebound high blood pressure and other nasty symptoms, such as tremors, from stopping suddenly or tapering too quickly.

Yes, beta blockers can cause depression. Chronic illness can as well, so if possible, try to pinpoint when the depression started.

How high was your blood pressure when upright before the beta blockers? There is no point continuing a drug that is making you feel bad, but perhaps your physician was concerned about your blood pressure prior to starting the beta blockers. I would have an honest conversation with your physician about your concerns.

I'm sorry. I know POTS is rough, and it is tricky finding the right combination of non-pharmacological treatment and/ or medications. I'm supposed to be a drug expert and even I have had a rough go finding a suitable regimen. Hang in there. Statistically POTS patients become more functional over time with healing or various treatments. It takes persistence and trying different things. I agree with the poster that said you have to "experiment".

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Insomnia can be a problem with beta blockers. I'm sorry that it didn't work out, Issie.

Ashleton,

Very best of luck on the exercise protocol. Exercise has done wonders for me. I was on a graded exercise protocol and now can run 6 miles/ day.

If you ever needed to explore more options, I wouldn't worry about excessive constriction from a non-selective beta blocker or unopposed alpha stimulation in high adrenaline states. Most POTS patients who can not tolerate beta blockers find their blood pressure becomes too low when standing, and they become fatigued and dizzy. These were just ideas why beta blockers could cause high blood pressure in a very small subset of patients.