TXPOTS

Is the pharmacy working on your refill today? Florinef needs to be tapered slowly when coming off, so you may be experiencing some withdrawal after cutting the dose in half. Let your doctor know, so you can be back on your regular dose by tomorrow. Sorry you are having a rough day.

Thanks for the heads up. My renin and aldosterone are super low, so we'll see about the angiotensin II.

Have you had your angiotensin II checked? I have been reviewing some of Dr. Stewart's studies, and it seems there is a subset of patients with low flow POTS who have low aldosterone and low renin, but high angiotensin II. There are angiotensin II receptor blockers, like losartan, so I wonder if this will be a future treatment option. It seems with low flow POTS the problem is too much constriction. I'm having my angiotensin II tested this week, just to see and test this theory. I also am going to try everything, so I may as well try the Levine protocol if he makes it available.

I will. I have to admit I'm a little skeptical because I currently run 5 miles, ride a recumbent, and do light weights. I was in excellent shape when I first came down with POTS and am back in great shape now after a year in bed. However, I can not stand or sit without very bad symptoms. I am homebound, aside from my work out routine. The movement of exercise must help the blood flow, but when I stop moving, the symptoms hit with a vengeance. His protocol may target different muscle groups though. I think exercise is absolutely critical, but perhaps it helps certain subtypes more than others. I suspect I have a sub type called low flow POTS, and my test results seem to confirm this.

Good point Mack's Mom. I do wish my physician measured pooling in the calves, abdomen, and thoracic area. I think Dr. Stewart has done this in some of his studies and subtypes patients into low, normal, and high flow based on these measurements. I only had a tech present for my testing. They also had me perform some Valsava like breathing tests before the tilt, which I could barely perform.

I love her blog. She just finished Dr. Levine's protocol with good results. Her blog is very positive and full of helpful information for all POTSies. I believe she's had 4 POTS flares a various times throughout her life, which I found interesting. I'm here in Texas, so I have considered trying his protocol.

I'm a pharmacist, so I'll give my input here. Beta blockers cause fatigue in more people than insomnia. However, insomnia, sleep disturbances, and nightmares are well documented side effects. Is he on the extended release? I would advise discussing this side effect with his doctor and inquire about non-extended release dosing and morning dosing. I honestly don't know whether this is a side effect he will get used to over time or not. If he sees a cardiologist, he or she should be able to tell you from their patient experiences. You can ask the pharmacy for a package insert off one of their bottles. These side effects will be listed if there is any question. I am sympathize. I get terrible insomnia will Florinef, so I must take the dose first thing in the morning.

Thanks. I still can't believe it. It's really, really bizarre, but once I started exercising and got my stamina up, I realized I felt better when jogging then not moving. I get all the signs of low blood flow to the brain shortly when trying to stand, sit, or do slow paced activities, but not when jogging. I know what it feels like to barely sit up, so I totally understand what a big hurdle it is. I agree that a physical therapist or physician guided regimen is the best way to go. I am still grieving for my old life. I want to be able to drive my kids to soccer practice, take them to the zoo, go to restaurants, but I still have the coat hanger pain and brain fog that the previous poster mentioned. On the flip side, I can jog. Never in a million years would I have guessed... Best of luck to all.

I learned the dangers of DDAVP the hard way. Before I met my current endocrinologist who actually has published studies on DI, I was diagnosed with DI without the formal water deprivation test, renin, and aldosterone. I was prescribed DDAVP and ended up in the hospital with hyponatriemia. However, I was on the more potent nasal spray twice a day. I know there are many patients with POTS who take the DDAVP tablet at bed time. I take a small amount in the morning and bed time, buy my dose is low, and I am under the care of a great endocrinologist who checks my chemistry every few weeks and more often in the beginning. She did check my urine osmos in the beginning as well. Maybe you can discuss a bed time dose and your blood pressure concerns with your physician.

Wow, ME TOO, my response to DDAVP varies from day to day as well, and I get terrible bladder pressure if I try to increase the dose. I am on a tiny dose compared to the typical central DI patients. I am now 34, but my symptoms of DI started when I was 16. I was dismissed and lived with what I thought was an irritable bladder for 18 years! I started getting full blown symptoms of POTS May 2008. I have been struggling to get a diagnosis and recover since. You hit the nail on the head. Something is setting the blood volume in the body too low. It's as if the volume dial is stuck at 4, when it should be at 10. Simply replacing the aldosterone with Florinef and salt, and the ADH with DDAVP does not take the problem away. It does help, but it doesn't fix the underlying issue.

Kimi, In a nutshell, good question. I think the researchers are trying to figure this out. Patients with pheochromocytoma have episodes of high blood pressure and low renin and low aldosterone. The treatment to reverse this is an alpha antagonist (the opposite of drugs like Midodrine, an alpha agonist) to restore the renin-angiotensin-aldosterone system. Many of us POTS patients have low renin and aldosterone, but have not experienced high blood pressure and are thought to have widespread vasodilation or pooling.. Some hyperadrenergic-POTS patients do have episodes of high blood pressure, but this is not so for all of us. I'd also love to know these answers. So many theories and subtypes of POTS...

I imagine an angiotensin II blocker may help a subtype of patients who have vasoconstriction at the level of the kidney from this dopamine mechanism they are researching or from impaired catabolism of angiotensin II. This is IF the theory proves true. Carbidopa should be effective in theory if excess dopamine is involved. Interesting, I'll be be watching and waiting to see how these studies go. Thank you for the links. I wonder why angiotensin II and EPO are not routinely measured in patients with low renin, aldosterone, and suspected hypovolemia. I also wonder why the study does not include measuring angiotensin II levels. I know the sample must be immediately frozen. Spaceorca, There are patients who take more. My POTS specialist has a few patients on 0.4mg. Doses over 0.4mg may cause adrenal suppression. Some patients (who can tolerate Florinef in the first place) can't tolerate higher doses because they get the "Florinef headache". I am also on 0.15mg/ day. I tried 0.2mg, but I got the dreaded headache. I do consume 6-8gm of sodium per day. I get my blood drawn periodically to test sodium and potassium levels and take my blood pressure from a home monitor. Some patients tolerate higher doses, so you may want to discuss this with his doctor if your son has found some benefit from the Florinef. If he has severe polyuria, DDAVP can also be a helpful drug to help patients hold on to more fluid. However, with a low aldosterone, he must be on Florinef, because DDAVP can cause low sodium levels. I actually was found to have diabetes insipidus, as well as very low renin and non-existent aldosterone. I had a formal water deprivation test in a hospital setting under close supervision. Just a few thoughts to consider.... the increased Florinef dose, salt, and DDAVP. I hope your son has a quick recovery.

Glad I'm not the only one who starts out ok in the mornings and starts to tire by 2pm. In fact, I am heading to bed now (8pm). My mom made a purchase for me that literally saved me. It is a Spirit recumbent bike with a high back. I started out cycling leaning back and only doing a few minutes at a time. I then started walking around the block with my husband or mother watching me in case I keeled over. I cried and whined and gagged. I kept it up and now I jog 5 miles/day and ride the recumbent bike with my head up for an hour. Unfortunately, I still have POTS and can not tolerate quiet sitting or standing for long. Forget restaurants, grocery shopping, and getting my hair done. I am still extremely debilitated, BUT I never in a million years thought I would ever run again after being bedridden for a year. Small blessings. Weight lifting and pilate type exercises aggravate my symptoms for some unknown reason, but I know many patients benefit from resistance training. I would start with sitting type exercises and maybe try graduating slowly to be more upright. Very best of luck. I know how frustrating and discouraging this.

My endocrinologist is so refreshing because she actually will say.... I don't know when she doesn't have the answer. I wish more doctors were like this. It's ok not to know everything. After all, how can they? She doesn't know why I have POTS, why I have low aldosterone, renin, this odd ball partial diabetes insipidus, but she is willing to work with me and do what she can to learn and try to improve my quality of life within the realm of her expertise as an endocrinologist. I think she is the only doctor I fully trust right now, but I do hope this changes.

Thank you for bringing up this issue. It's comforting to read I am not the only one going through a post traumatic type period after being misdiagnosed for so long. Unfortunately, I was misdiagnosed with a spontaneous spinal leak and endured too many myelograms, brain MRIs, and over 30 blood patches. I was over exposed to radiation and needed a spinal steroid shot to counter serious nerve pain after all these useless procedures. It is very disturbing and traumatic to relive. Like many of you, doctors must earn my trust now. I question everything and will not blindly partake in treatments or diagnostic testing without concrete evidence or suitable explanations. It's disgusting to see how many useless procedures I endured and how many health care dollars were given to doctors who were either way off on their diagnosis or really could have cared less about my well being. No disrespect to the great physicians out there trying to make a difference. In fact, my younger sister, uncle, and aunt are all physicians who practice out of my home state. The worst is being degraded and disrespected when you feel so ill and vulnerable.

An ACE inhibitor would technically decrease formation of angiotensin II. Anyone on an ACE inhibitor? It does appear to be yet another paradox, and one would think a patient's blood pressure would be high if angiotensin II were high, but maybe the drop in aldosterone compensates. This is very interesting. I'll look more into this. Thank you for the response Quick edit... I just saw an article on the use of losartan, an angiotensin blocker, with good results in low flow POTS (but a small study and no long term prognosis follow up). I am grateful researchers are continuing to explore new theories.

Good point Vemee, My understanding is the best way to measure aldosterone and renin is in upright position. Also, my endocrinologist did not want me ingesting much salt prior to test.

Hi Vemee, I don't know that I am in this low flow POTS category for sure, but I do have confirmed hypovolemia, low renin, and low aldosterone. I responded normally to the ACTH stimulation test. I was told my adrenals are perfectly healthy, but obviously something else is WAY off.

Yes, the article in Circulation. Interesting article. Someone please correct me if I am wrong. The renin aldosterone paradox is a state of low renin and low aldosterone despite the POTS patient having hypovolemia. In a normal patient, when circulating blood volume is low, the juxtaglomerular apparatus in the kidney senses this and triggers the renin-aldosterone-angiotensin system. Renin triggers the conversion of angiotensin I to II via angiotensin converting enzyme. Angiotensin II then triggers the adrenals to release aldosterone which causing sodium and water retention. It also facilitates release of ADH in the pituitary. Angiotensin II also causes sodium reabsorption and is a vasoconstrictor. The paradox is that blood volume is low, but this vital system is not being triggered to its full capacity. I don't think even the top POTS researchers understand why as of yet. There are theories such as denervation of the kidney or a structural problem with the juxtaglomerular apparatus itself. There is a part of the puzzle I am not grasping yet from Dr. Stewart's research on low flow POTS, angiotensin II and nitric oxide. Perhaps, this only applies to a subset of patients WITH low renin and aldosterone. Still trying to learn... I wish we had a better grasp on POTS. Hopefully, the future will bring more research and understanding. Is that what you got from the Raj article?

Dr. Stewart's work confuses me. For example, I have low renin, low aldosterone, and low ADH release (thought to be due to denervation of the kidney and failure of the renin-angiotensin-aldsosterone system per my endocrinologist and POTS specialist). Angiotensin II promotes the release of aldosterone from the adrenals and release of ADH from the pituitary. I am confused as to how an elevation of angiotensin II would lead to a decrease in aldosterone. Anyone understand that mechanism? His theory here seems to be a paradox, but I must be missing something.

The topic of exercise really interests me, and I can't wait to see the final results of Dr. Levine's study. I think this is nutty, but I can jog 5 miles/ day and ride my recumbent for an hour/ day. I have no problem with exercise tolerance. In fact, the exercise appears to pump the blood back up my brain, and I feel better when jogging than walking, sitting, or standing. However, when I try to sit or stand without my head supported, the horrid POTS symptoms start relatively quickly. I had to build up to this after being bedridden for almost a year. I still can not engage in activities such as shopping, getting my hair cut, driving, taking my kids to the park, or anything that involves quietly sitting or standing. I understand the deconditioning argument, but when I got my first life altering symptoms of POTS, I was in great physical shape. ??? Cardio does not bother me, but any kind of weight lifting or abdominal crunches send me into a flare. Anyone else like this?

I think my body, especially my brain, produces way too much mush. - lol Thanks for the typo - the chuckle helped make my laugh medicinal quotient for this morning. You have incredible insight into the body's biochemical processes and your input is much appreciated. I've often wished I could get a consult with one of the professors at the local pharmaceutical college. YES... my brain produces way too much mush!!! LOL! Oh dear, no matter how much insight my pharmacy training has given me, I am still a POTSy. Don't worry friends, I am not working, so I won't be filling your prescriptions. I corresponded with another pharmacist member, and we agreed the brain fog was too bad to be working right now.

Well.... If your blood pressure is not high from the Midodrine, I would ask more questions. In patients with hypertension (high blood pressure), renin and aldosterone may be low. Constriction of the blood vessels at the level of the kidney may suppress the renin-angiotensin-aldosterone feedback loop. In fact, beta blockers and other blood pressure medications target this loop as a primary or secondary means of controlling blood pressure. Beta blockers and Florinef suppress renin production. Florinef is basically a synthetic aldosterone, so your body will not be producing mush of it's own. However many POTS patients are not making much of their own to begin with. I suspect this is one reason why beta blockers make some patients worse that have POTS (through suppression of renin and knocking out the compensatory increase in heart rate). Until we learn more about the underlying mechanisms of POTS, I would stick with the medications that make us feel better and keep working with our physicians to find the right combination, which will be different for each of us. How is your blood pressure?

I am with kayjay... a small dose of Klonopin really works well for me. I could be wrong (and I don't mind being corrected), but it seems as though Klonopin is the most common benzodiazepine used to treat POTS. I used to get this horrible and embarrassing leg trembling. A woman on you tube actually documents these POTS legs shakes and trembles, so I was relieved to find I was not alone. The Klonopin took care of that awful syndrome which I presume is from an adrenaline surge. It's interesting but Klonopin has an indication for restless leg syndrome, which is why my neurologist chose this benzo over others.

Ativan and Klonopin are both in the same class of medications (benzodiazepines). Ativan is shorter acting than Klonopin and Valium. It doesn't stay in the body as long, but it works more quickly. Xanax is even shorter acting than Ativan and works very quickly for an acute, severe panic attack or adrenaline surge. As a preventative and sleep aid, Klonopin may be your choice due to it's long half life. For abortive therapy and occasional use, some physicians choose Xanax. Ativan falls in between. It really depends on patient and physician preference.