Lenna

Julie, I sent you a PM. It's a long story... Lenna

Hey Julie... Here's what happened. He was functioning a notch better than his POTSY normal when he was taking 25 mg. of Losartan in the morning. In the hopes of getting to 2 notches better, he increased the dose by 1/2 pill (12.5 mg.). The other change he made was to take that half pill at bedtime in the hope that he might have better quality sleep and wake up feeling better. Unfortunately, that is not how his body responded. After 2 weeks of feeling crappy, he cut the morning dose back to a 1/2 pill, so he was taking 1/2 pill 2x day. Again, he spent the next 10 days feeling terrible. So now he's back on the original dose of 1 pill only - 25 mg. - in the morning. It's been about 5 days and he hasn't felt well at all, but I'm hoping that things improve over the next week. The problem is that there is no one to advise us. Losartan is such new territory. But I'll keep you posted on how things go. Lenna

He had been doing quite a bit better, but then we started playing around with the dose and he crashed. He's back on his original dose now, but Losartan takes a while to have an effect, so it may be a week or two before he gets back to where he was. IF he gets back to where he was...

Julie, Quest Diagnostics can test for Angiotensin II; I think it's a blood draw with some tricky requirements on the part of the lab. Dan's neurologist wouldn't order the test so his pediatrician ordered it but ordered the wrong test so we never figured out what Dan's Antiotensin II level actually was prior to starting the Losartan. I also get the sense that the test may not be a particularly reliable measurement (anyone can correct me if I'm wrong on that) so I wouldn't necessarily use the Angiotensin II level as a determining factor of whether to try a treatment or not. Lenna

Julie, wouldn't that be great if it could help with your Reynauds! First, I want to say that so far Losartan has not been a "magic bullet" for Dan. He still has bad days and bad partial days. However, the "bad" doesn't seem to be as bad as it used to be. And there seem to be fewer bad days now. His dizziness is a little better, his energy is a little better, and his brain fog is much better. The past year has been very rough for him and this is the first improvement in a long time. He's still evolving with the dose. His doctor doesn't really know what would be optimal, and we're having a tough time getting info from Dr. Stewart about it because this is still experimental. Dan started on 12.5 mg. each morning for 2 weeks; then he increased it to 25 mg. each morning and stayed on that for about a month. Now he recently started taking 12.5 mg. at bedtime in addition to the 25 mg. in the AM. I think he'll stay on that for at least a month before considering the possibility of increasing again. I doubt that he'll go any higher than 50 mg for a total daily dose. It seems to build up slowly, so he doesn't see the benefits of an increase for the first couple of weeks. I'm hoping that things continue to improve for him as he goes further with this. The one downside is that it is creating havoc with his blood pressure, and so his doctor said that he MUST stay on salt pills to try and keep his blood pressure up. In light of what you were saying about salt, that might be an issue for you. I'll keep you updated! Lenna

Honestly, reading and deciphering the medical studies is like trying to decipher Chinese for me...I wish I could explain how the Ang II and Losartan affect hypovolemia but I really don't get it myself. The RAA system seems to be the most complicated thing I've come across. I'll be thrilled if Dan's hypovolemia improves, but I'll be ****** if I understand why it happened. I need things laid out for me in very simple terms. I know that Ang II is a potent vasoconstrictor and if ACE2 doesn't convert it to Ang 1-7, then you are never going to get to the point of producing Nitric Oxide, and your blood vessels will be too constricted. This is what I believe is happening to my son. Dan participated in a clinical trial last summer at Beth Israel Hospital which confirmed that he probably is not producing sufficient Nitric Oxide. He has never had his Angiotensin II level tested. Dr. Stewart is still conducting studies with Losartan, so I guess it would be fair to say that this is an experimental medication for Low Flow POTS. Somehow, by blocking Ang.II receptors, the Losartan is supposed to correct the faulty RAA system. Danny hasn't been taking this long enough for me to say definitively that he is better. He does seem to have a little more energy, a little less dizziness, and most dramatically he has a lot less brain fog. This is the only medication he's taken in the past 3 years that hasn't made him feel worse. He's still on a pretty low dose of Losartan and is increasing it very slowly. We don't really know what the optimal dose will be. After every increase, it seems to take a couple of weeks or more before he feels the effects. So this is a slow process for him that requires patience. And Yes, now low blood pressure is an issue. His blood pressure is now all over the place. It can be good - 120/80, and then bad - 90/70; but the interesting thing is that he can feel bad when his blood pressure is good, and he can feel good when his blood pressure is bad. It doesn't seem to correlate. His doctor told him to stay on salt pills, even though they are contraindicated with Losartan because there is a risk of too much Potassium. But without the salt, his blood pressure might really get too low. So now Dan has to have his electrolytes tested frequently. I'll keep you up-to-date on this, because I'm hoping that it can be a really important breakthrough for some people with POTS.

Sue, Here is my understanding of the role of Angiotensin II in POTS. This explanation may be a bit simplified, but like the rest of you, I'm trying to learn about things that are outside of my field of expertise (whatever that is...). There are many steps in the Renin/Angiotensin/Aldosterone process which regulate blood pressure and fluid volume in the body. One of these steps involves the conversion of Angiotensin II to ACE 2. If you have too much Angiotensin II because the conversion to ACE 2 isn't happening, then your blood vessels will be too constricted. Most people with POTS have the opposite problem - their blood vessels are too dilated. That's why the first medications they're given when they are diagnosed with POTS are vasoconstrictors like Midodrine. Another thing that helps most POTS patients is drinking lots of water and taking in lots of salt. However, if the RAA chain of events is disrupted by the inability of Angiotensin II to convert to ACE 2, then you will have low blood volume regardless of how much you drink and how much salt you eat. Dr. Stewart in NY has given a name to the subset of POTS patients whose blood vessels are too constricted and whose blood volume is always low. He calls this "Low Flow POTS". Low Aldosterone and low Renin are also typically found in people with Low Flow Pots. If things like Midodrine, Mestinon, fluid & salt loading, compression socks, etc., are helping you, then I don't think that Angiotensin II is something that you need to worry about. On the other hand, if all the standard POTS treatments don't help or are actually making you feel worse, then you might want to talk to your doctor about Low Flow POTS and Angiotensin II. You can Google "Julian Stewart" and "Low Flow POTS" to find lots of articles about his studies. Dr. Stewart has been testing a medication called Losartan for Low Flow POTS. It is an Angiotensin II antagonist. My son recently started taking it. It's a bit premature for me to report that it's a success for him, but I can say that he has been seeing some benefits so far and that we're still playing with the dose. If it seems to be really helping him a few months down the road, I'll post a detailed report about it on this forum. I hope this helps. Lenna

My son had some tests that showed him to be "borderline" gluten intolerant. He was off gluten entirely for about a year. Now he's off and on. He never really felt any benefit from being gluten free.

Cordelia, There is a department at Beth Israel called the Center for Autonomic and Peripheral Nerve Disorders. While the personality of the doctor who runs the department may not be everyone's cup of tea, he does understand POTS. In fact, he is a leading researcher in the field. That might be a place for you to start. Be well, Lenna

If you joined and you were picked as a match for someone, you would have to go through a very thorough physical exam. They would need to know about any physical problems that you have. Then you would be given drugs to stimulate the growth of your bone marrow. Then you would undergo a procedure under anesthesia to remove some bone marrow. It doesn't make me angry that you want to join the registry - it makes me feel that you are a wonderful person. My husband received a bone marrow transplant in May because he has chronic leukemia. All we know right now about the person who donated is that he is a young, healthy man who lives in Germany. We hope that his body is healthier than my husband's because his cells have to kill each and every cancer cell that lives within my husband's bone marrow. His cells will hopefully take over completely -- my husband won't even have the same blood type that he had for the first 58 years of his life! It would be a tragedy for us if the donor had an unrevealed problem, like chronic fatigue syndrome for example. (people with CFS are not allowed to donate blood) So far my husband is doing well. I hope you can find a way to channel your wonderful spirit into another path of helping people! Be well, Lenna

Has your son been seen by a gastroenterologist? Has he been tested for gastroparesis (slow motility...slow digestion?) My son was constantly nauseous and lost a lot of weight until his gastro put him on a medicine called "Domperidone". It has helped a great deal. (He had previously tried Zofran, which did not help).

Ficticious, DO get in touch with them if you want to know your results. Dan participated in the study in August, and we still don't have all the results, but we have gotten some. However, I had to chase the doctor for it - I don't think they would have automatically gotten in touch with me. Hope you find out something useful. Lenna

Hi Elizabeth, My son participated in this nitric oxide clinical study at BIDMC in August. It takes months to get the results back - he got a portion of the results back a few weeks ago, and those results may lead to a whole new approach to his treatment. You can send me a private message if you want, and we can exchange more information. Lenna

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 have a very different theory about Advil. It also helps my son. Ibuprofen is a vasodilator http://en.wikipedia.org/wiki/Ibuprofen. I have reason to believe that my son is vasoconstricted - that he has "low flow" POTS - and I think the Advil helps his blood circulate better because it opens up his arteries and blood vessels. Sadly, it's not a good thing for your GI system to take in sufficient doses every day. Simply taking one Advil a day does not help him - he needs a larger dose.

I wish it were a typo. The doctor was quite disturbed. He said that if Dan were a girl, he would not be menstruating. Dan is 5'11" and 125 lbs.

I have 2 questions: For those of you who suspect that you have low flow POTS, have you ever tried an Angiotensin Receptor Blocker like Losartan? This is the drug that Dr. Stewart has been studying with LFP in some of his more recent studies. And...how is the test for Angiotensin 2 conducted? It sounds like it's more than just a blood draw. Thanks! Lenna

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.

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.

Do any of you know for sure (or strongly suspect) that you have Low Flow POTS, and have you ever tried taking ACE inhibitors? How about Clonidine? How did any of those affect you? Thanks! Lenna

John, To answer your question about my son - he is 18 years old and has a very thin frame. He was been at the bottom of the weight chart his entire life (but at least he was ON the chart; now I'm sure he's way off). He never had a good appetite, always felt full very quickly and has always been a very fussy eater. When he got sick with POTS at age 15, he lost a bunch of weight. He has regained some of it with the help of Domperidone and Periactin, but needs to put on at least 20-30 lbs. to approach anything close to a normal weight now. He tries but it's tough. At one point he was about 8 lbs. heavier than he is now, but then he went through a bad patch and lost that weight again. It's a struggle!

Interesting topic. My son is 5'11" and weighs about 126 lbs. His BMI is 5%! He has always been excrutiatingly thin with a poor appetite. He gets full very easily. Lately his appetite has been somewhat better (he takes periactin to stimulate appetite) and his nausea is more controlled that it used to be (Domperidone), but he isn't gaining weight. There is certainly a connection, but I never gave thought to his thinness causing his POTS symptoms - I always assumed it was the other way around.

Hi, I'm wondering why your daughter hasn't tried Florinef or Midodrine? They didn't work for my son, but those meds do help a lot of people and are usually the first meds a doctor will try.

Thank you Cheryl and Christi. What you sent were not the same thing but both are so useful. This forum has come through for me again! Lenna

Thank you so much for your help! I think the Dynakids website will do the trick. The other articles recommended will be helpful as well. Emphasizing dysautonomia rather than just POTS will make it much easier to explain. Cheryl, do you know how I can get my hands on the overview that Dr. Fisher gives to his patients? I listened to one of his podcasts and thought he was great. Thanks again- Lenna