TXPOTS

Very best of luck to your daughter. Exercise has been one of the few things to actually help, and I feel better with the movement. I'll be looking forward to the larger study. Keep us posted.

Ugh, I had these exact symptoms a year ago before I was properly diagnosed with POTS. I finally relented and agreed to a very small dose of Klonopin, and the shakes and tremors went away.

That's a UTI alright! You poor thing. I'm just glad you are feeling better (from UTI and POTS). I still have to take the DDAVP (was peeing 6 liters a day without it), but it does cause annoying bladder pressure. It may even be causing flares of interstitial cystitis (non-infectious bladder irritation) when the urine gets too concentrated. You have me stumped on the antibiotic making POTS feel better. Hey, as long as you are feeling better!!!

Did your physician run a urinalysis or culture to verify UTI? Are you still on Florinef and DDAVP? I just ask because I periodically feel as though I have a UTI, but my urine is clean. Oddly, when my bladder acts up, my POTS can be better. After multiple urologist and ob/gyn appointments, the bladder symptoms seem to be related to the meds. Which antibiotic are you on? Glad you've had some better days.

I actually have the low blood volume and "Grinch heart". I exercised my little heart out before I got POTS and have been back exercising since my diagnosis after a year of feeling like death. I still have POTS, and I still can't stand up or sit up without head support for 5 minutes. I'm plugging on, but it's annoying to say the least. I am still disappointed with the study due to small study size. I also wonder if the participants had a milder form of POTS since they were not on medication. I'll have to read if any of the patients stopped for the study. Maybe those are the 7 patients who did not participate. Dr. Levine would probably say the autonomic symptoms are compensatory. There is an increase in sympathetic activity and increased peripheral resistance, leading to autonomic symptoms. Still not impressed...

Telling people we have "POTS" is bad enough! Hope we don't have to say we have "grinch syndrome" !!!! LOL!!! Thanks for the laugh, summer. I really needed it today. I was one of the members drumming up this study. I feel like I just did a crash and burn.

Dana, I'm really let down. I have experienced a 60 bpm drop in standing with treatment and exercise over the past 6 months, so I am a big exercise proponent. That being said I still am still extremely debilitated and symptomatic every time that I stand. I would be interested in reading more about the patients quality of life scores, but my interest waned when I read there were only 19 patients in the study. I thought the study was large and totally groundbreaking. After all that build up, I'm hearing the Charlie Brown wah wah wah.....

Please tell me I am looking at the wrong article, and the study did not involve all of 19 patients. How do you proclaim to rename a syndrome based on a study with 19 patients? I'm so glad that exercise helped improve the quality of life of these patients, but seriously, 19??? Someone tell me there is another study. I believe they started with 25 patients, but 19 patients completed the protocol. He may be correct in his hypothesis, but I was under the impression this was a large study.

There is more data that they collect once you get accepted into the program. The complete results and data from a study done with hundreds of people with POTS will be published this summer in a major cardiology journal. This should give you an idea of the parameters that are tracked. Dr. Levine told my husband June 22nd. We'll see. I am in process of getting sponsored to start the protocol. I believe they just get a starting and follow up heart rate after 10 minutes for the data base, but I could have misunderstood. He probably does a very comprehensive work up and follow up if you are one of his patients. I am looking forward to reviewing and dissecting the study. I am curious regarding the number of patients tested, exclusion criteria, and what end points he studied. I believe his team works under the premise that POTS patients have smaller hearts than the rest of the population. The exercise program is designed to increase cardiac size and function. Rowers have the largest hearts of all athletes. That's where the rowing ties in.

I get these sweats occasionally as well. They started before I was on medications for POTS and have persisted. They always occur in the middle of the night, and the sweating is primarily on my chest. Luckily, they happen about once a month or once every other month. I am not in menopause. Yet another disturbing symptom...

In the brain...yes, it does increase dopamine and levodopa definitely does. I think the jury is still out on whether methyldopa is helpful for POTS, so I wouldn't say you were mistreated yet. Many patients that have POTS are on SSRIS, SSRIs, and Wellbutrin and find benefit. It's a perplexing condition when the treatments are so different.

Hi Issie, Wellbutrin prevents the uptake of norepinephrine and dopamine at the neural synapse, so essentially the drug increases levels of norepinephrine and dopamine at the neurons. In opposition, methyldopa reduces the formation of dopamine to begin with. So, a very simplistic view would be methyldopa=less dopamine (and norepinephrine and epinephrine) and Wellbutrin= more circulating dopamine and norepinephrine at the nerve level. Very, very different drugs. No wonder so many POTS patients have horrid drug reactions. Many of the medications used for POTS have opposing effects in the body.

I could not withstand the 15 degree angle straight away. My husband started me on some wooden blocks, and I have been slowly increasing the tilt of my bed. Just a hint, in case she has trouble getting to sleep from pooling in her legs while trying to sleep. I am also in the process of finalizing my application for Dr. Levine's protocol. I already exercise quite a bit, but I tend to go at too hard and too fast, so I need the protocol to pace myself. I am fine while exercising, but I crash when stationary. Your daughter has many factors, especially her age and a caring family on her side. Study comes out June 22nd.

I chose to take a supplement with just L-arginine, not added L-citrulline or L-orthitine. Doctor said 1 week trial. The effects on NO should happen quickly in the body. Body builders often take 3gm prior to a work-out. I noticed that I felt tired and queasy for awhile after taking a dose. Overall, it just wasn't for me, but maybe others will benefit. I can't say it absolutely made me worse, but it wasn't a miracle cure.

Finished up 2 week experiment per my POTS physician on L-ariginine (4 grams/ day). No benefit for me. We have also been reading about the effects of NO and POTS, so it was worth a try. Midodrine makes me feel far worse, but this also goes for Clonidine and Cymbalta. One will swiftly pee all that extra Vitamin C out. Taurine is a diuretic... not such a good thing in POTS patients. Vitamin E can potentially thin the blood at high doses daily doses over a sustained length of time. More of a concern when patients are on other blood thinners as well.

Quick synopsis on the 3 drugs. Dibenzyline: This is actually an alpha antagonist. It is used in pheo and kick starts the renin-angiotensin-aldosterone back into gear. Think of this drug as the opposite as Midodrine. It can actually cause POTS in otherwise healthy individuals. It is generally not used in POTS because it can take the rug out from underneath us by causing significant vasodilation. I've had this conversation with my POTS physician and endocrinologist because I wondered why it was not being used in POTS when renin and aldosterone are so low. That being said... mixed beta and alpha antagonists like labetatol are sometimes used successfully in POTS. I have never dispensed this particular drug in all my years as a pharmacist, so your physician may not have a comfort level with this medication. I have yet to hear of a POTS patient being treated with pure alpha antagonists. However, you've had success with this drug in the past. Clonidine: This is an alpha agonist, which a high affinity for alpha 2 receptors in the brain stem. This drug tricks the brain into believing catecholamine levels are higher than they are, interfering with the brain's signals to the adrenal medulla. Catecholamine release is lowered. Methyldopa: Inhibits the enzyme that converts L-DOPA into dopamine. Dopamine subsequently would be converted into norepinephrine and epinephrine which stimulate beta and alpha receptors throughout the body. These drugs are all blocking the sympathetic nervous system response in different parts of the chain. Methyldopa blocks the production. Clonidine blocks the brain's signal to fire. Dibenzyline blocks the alpha receptors that the catecholamines would be triggering further down in the chain. I would definitely encourage you to talk with your cardiologist about your concerns. Keep calling until all your questions are answered and concerns are addressed. It is your body, and you certainly have the right to discuss worrisome side effects, follow up lab work, and the fact that you have used dibenzyline in the past. Rama, I don't wish POTS on anyone, but I was relieved to here many other POTS patients have low stroke volume. I also recently heard that some researchers are calling POTS "The Grinch Syndrome" because so many POTS patients have small hearts. This would be the opposite of elite athletes who have huge, torpedo shaped hearts. This burns me up because I have spent almost every day of my life exercising (aside from much of the last year, but i'm back at it). I would love to know what on earth the underlying cause is. I resolved myself to stop pondering the research, but alas, it's not my nature.

I thought the study was involving patients with CFS. I could be wrong. I have a hard time believing methyldopa will be the new wonder when clonidine has been used quite extensively in POTS patients. Clonidine appears to help some, while making others far worse. If the root problem is an overactive sympathetic nervous system, I can certainly see methyldopa and clonidine helping. However, if the increase sympathetic tone is compensatory, are we not blocking the body's back up mechanism to perfuse the brain? I guess that's the purpose of the study, to see. Just another thought/musing... Some of us have mentioned having abnormalities on our echocardiograms. I have left ventricle hypocontractility and a reduced stroke volume. I am told this is not CHF, but rather a small, stiff, deconditioned heart. Why? I'm not sure. I have been an extremely active athlete my whole life, working out almost every day. I am going to guess some kind of genetic predisposition to a small heart. Who knows? Maybe this is why I have always felt better when working out. If you have a weak heart, common sense would say one's heart is not able to effectively pump blood upstairs. The result would be an increase in sympathetic tone to get blood to essential organs. It seems counter productive to give drugs to block cardiac output if cardiac output is already low. What am I missing? I did try clonidine for 2 weeks after developing supine hypertension.... yuck, disaster! I am happy for those who do find benefit though. Do most patients with POTS have completely normal heart size and ejection fraction? Elegiamore, I hope the methyldopa brings some relief to your high bp. How frustrating for you! You certainly have a strong sympathetic response. In an ideal world, baseline blood counts, liver function panel, and a Coombs test would be performed, and then monitored every few months to check for hemolytic anemia when starting methyldopa. I wish you the very best. I have the same frustrations with low blood volume, ECHO changes, and adrenaline surges (though not as strong as yours). Hugs.

Mack's Mom, How long did the initial headache last? Mine lasted for 3 days. The duration as well as the severity concerned me.

I would much rather be taking a SSRI or SSNRI for my POTS anxiety, but unfortunately they give me the "headache from he double hockey sticks". Anyone else react like this? The Klonopin helps with sleep and relaxes my tense muscles, but it really doesn't help with the adrenaline surges. If I could have tolerated the SSRI, this would have been a good choice to try with a prn benzo for 6 weeks, until the SSRI kicked in. Anyone come across any studies on SSRIs and POTS?

Ditto this. My POTS doc said this is a very common complaint.

Yes, my resting pulse is now between 55 and 70 bpm. It used to be between 80 and 90 bpm and 120 bpm a year ago even when supine. My standing heart rate is anywhere from 70-90 bpm. I still have brain fog and coat hanger pain, but I am managing much better overall. I may still fail a tilt if I was forced to stand still. My ECHO showed a reduced stroke volume in December, but was thought to be due to an abnormally small, deconditioned heart and not heart failure. Overall, a big improvement since the days when my husband had to escort me to the loo.

I think the ideal way would be to rent a tilt table or go somewhere this is offered. I know my POTS specialist offers this, but I am hours away. I use a bed wedge and pillows and approximate a 70 degree angle. A mattress against a wall may be easier.

I believe Dr. Levine excluded patients with EDS from the study, so he is not saying all patients will be cured with exercise. Issie, Are you able to do recumbent exercise? Swimming, recumbent bike (one that leans way back), floor exercises? I just wonder whether increasing muscle mass would not cure, but still benefit a patients with EDS. Again, my original posts on exercise were negative, so I am just trying to give encouragement and not scare the daylights out of patients who may be starting to exercise. I don't hold it against or think less of patients that can't exercise in any way.

Yes, I just started last week. It is so hard!!! I am supposed to be doing a 70 degree angle twice a day for 10-15 minutes. My record is 5 minutes. My legs turn blue and purple in one minute. It bothers my knees a little, so I am a little concerned about this because I don't want to put a kink in my exercise regimen. I don't actually have the table, so I am using a bed wedge and pillow against a wall. I have also raised the head of the bed, and I wake up with sore legs. I assume this is from pooling.

Rama, I have been in the hospital 5 times in the past year. I was so ill that I could not get up to use the restroom by myself. I am still on my meds while embarking on the exercise regimen. I believe if I can exercise, than anyone can with a physician directed program. I am not a patient of Dr. Levine's, but I think he is on to something. His study should be out next month, and he certainly acknowledges that many patients were very active before POTS. There may be a genetic predisposition explained. And YES, I've noticed quite a dramatic improvement from only a week of weight training and rowing, but I was already exercising quite a bit already. I am not going to waste my energy defending myself since this is not humanly or scientifically possible. I don't believe it myself quite honestly. It is probably just the elation that I am actually able to walk around the gym and do weight equipment and rowing, when I didn't believe I could. I also started taking a nitric oxide precursor. My physician wants to do a case report if the results are positive. I don't want to disclose the supplement because I am afraid that it may actually make some POTS patients worse, so I want to give it a longer trial. I'm sure you already know which supplement I am referring to. Of course, I could crash and burn tomorrow.