I Think I Have Found A Treatment Not Only For Just Pots, But Other Rheumatic Illnesses.

[bellgirl]

Kim,

Thank you for the welcome, and I appreciate the comment about the name "POTluck" also. Bystolic is an interesting Beta blocker in that it is also suppesed to potentiate nitric oxide. Are there many other people on Dinet taking Losartan?

Leave it to me to not only have a rare illness, but be unconventional for POTS. I was hypertensive through the roof, but it was really a hills and valley effect; started with very low blood pressure when I was young...my grandfather was 46 when he died of a CVA, dad died at 71 of a stroke, and had a cerebral aneurysm, too, (He lived 12 years after the aneurysm), and I had stroke symptoms in my early 40's. So I am not the norm on this site either. What's normal, anyway?! But I finally have a diagnosis...yah...relief, with some treatment

[issie]

Edited - just pay better attention - already was posted what I was saying. LOL One of those days.

Kim, just wondering if you have EDS too?

Issie

[RichGotsPots]

So Jangles, any new updates to your experiments?

[loot]

Hmm this subject seems to be my territory. First of all, in my opinion, Losartan is no good. The theory is fine but Losartan seems the worst of the whole drug class of ARBs. I've made extensive research on ARBs and that while Losartan has the most history and studies, to me it is the worst of them all. Here is a comparison of the ARBs:

http://bjcardio.co.uk/2010/05/comparative-arb-pharmacology/

Particularly the insurmountability of Losartan. Basically even if it does work, it will stop working soon enough - so in my opinion no good for the long term. This is an interesting theory but aren't ARBs supposed to be bad for people with POTS according to the website we are on now? http://www.dinet.org/what_to_avoid.htm

Edited October 9, 2013 by corina

[dmjl27]

this information is particularly interesting to me. I'm going to research this, as well. would love to hear more

[Guest Alex]

Here you have several articles on angiotensin regulation and POTS

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3050076/?report=classic

Abnormalities of Angiotensin Regulation in Postural Tachycardia Syndrome

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3577936/?report=classic

Altered Systemic Hemodynamic & Baroreflex Response to Angiotensin II in Postural Tachycardia Syndrome

http://ajpheart.physiology.org/content/294/1/H466

Angiotensin II type 1 receptor blockade corrects cutaneous nitric oxide deficit in postural tachycardia syndrome

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2765216/?report=classic

Defects in Cutaneous Angiotensin Converting Enzyme 2 and Angiotensin-(1–7) Production in Postural Tachycardia Syndrome

http://www.clinsci.org/cs/110/0255/cs1100255.htm

Increased plasma angiotensin II in postural tachycardia syndrome (POTS) is related to reduced blood flow and blood volume

happy reading

Alex

[spinner]

Bellgirl, yah, theres plenty of us that dont have all the classic symptoms-----i tend towards bradycardia so my problem is almost always a slower heartbeat. Ive had palps and pvc's but its more rare.

My blood volume was normal at cleveland clinic but sweating diminished.

I seem to have just about every other DA symptom. I know I dont have mast cell problems, but i just havnt been sufficiently tested for

the more advanced POTS blood tests.

My condition presents as much as anything like Lupus--but the CC ruled it out. In the end, rheumatology labeled me with fibromyalgia,

but we all know thats a symptom, not a diagnosis.

I find that my worst symptoms rotate. The past 8 months it has been EXTREME heat intolerance. Im talking about cannot tolerate

74 degrees. Any kind of harsh sunlight directly on my arms makes me go weak at the knees. I have late onset asthma and sudden

allergies to foods. Alcohol of any type makes me completely sick.

I cannot spike my BP suddenly or it will flare me for 24 hours and yet my blood pressure itself is usually quite normal, 120/80. Im an

anomoly, which is the bane existence of chronic disease. A lot of us here just want to be finally specifically diagnosed no

matter what it is. But its been 3 years, so Im certainly hoping that I wont have total DA failure but nobody really knows.

[Lenna]

Hmm this subject seems to be my territory. First of all, in my opinion, Losartan is no good. The theory is fine but Losartan seems the worst of the whole drug class of ARBs. I've made extensive research on ARBs and that while Losartan has the most history and studies, to me it is the worst of them all. Here is a comparison of the ARBs:

http://bjcardio.co.uk/2010/05/comparative-arb-pharmacology/

Particularly the insurmountability of Losartan. Basically even if it does work, it will stop working soon enough - so in my opinion no good for the long term. This is an interesting theory but aren't ARBs supposed to be bad for people with POTS according to the website we are on now? http://www.dinet.org/what_to_avoid.htm

I'm not a frequent visitor to Dinet anymore because my son is so much better these days, but I do occasionally check in, and saw this post today.

Losartan has literally given my son his life back. He spent 3 and a half long years suffering daily with dizziness, fatigue, nausea, you name it. He went overnight from being a straight A student to being unable to attend high school. After 3 years of trying meds like Midodrine, Mestinon, beta blockers, Clonidine, etc., none of which helped him, we figured out that he has a nitric oxide deficiency and started him on Losartan (Cozaar). Within months, he was able to take SATs, pass a GED exam, get a part-time job, apply for colleges, and now he is a straight A student in his sophomore year (living in a dorm) at a prestigious university. He still has POTS, but Losartan makes it possible for him to function.

He has now been on Losartan for more than 2 and half years. Losartan is not a good drug for everyone, but it is a good drug for SOME. No two people have the exact cases of POTS and what works for one person may not work for another. Blanket statements that a drug is bad are not helpful.

[arizona girl]

Lenna that is wonderful news about your son. You are right we all come to dysautonomia from many different places and defects. If we are lucky enough to find those defects, we can have a better quality of life. Yes we can have more then one defect going on at the same time. I do! Maybe no cures yet, but treatments that can manage it are better then nothing.

I have an mthfr gene defect and primary immune and autoimmune disease causing my dysautonomia. I just found out the hard way that my treatment plan was working for me, if I don't deviate. It was an unintentional experiment where I pushed my infusion schedule around, along with my autoimmune drug being reduced and not treating the mthfr defect with methylfolate after the samples ran out. When I was on everything on schedule my labs improved significantly and my symptoms were better. When my plan was disrupted I had a set back and my inflammatory markers and symptoms got worse again, including getting an infection. Infections were treated and I'm back on plan. It will probably take a few months for my meds to get back up to speed.

The silver lining is that at least I now know it was working as long as I stay on plan. I hope you all get to the point where you are past the difficult and long diagnostic process and get finally to a treatment plan that works for you.

[davecom]

Hi arizona girl,

How did you figure out that you have the mthfr gene defect?

Lenna that is wonderful news about your son. You are right we all come to dysautonomia from many different places and defects. If we are lucky enough to find those defects, we can have a better quality of life. Yes we can have more then one defect going on at the same time. I do! Maybe no cures yet, but treatments that can manage it are better then nothing.

I have an mthfr gene defect and primary immune and autoimmune disease causing my dysautonomia. I just found out the hard way that my treatment plan was working for me, if I don't deviate. It was an unintentional experiment where I pushed my infusion schedule around, along with my autoimmune drug being reduced and not treating the mthfr defect with methylfolate after the samples ran out. When I was on everything on schedule my labs improved significantly and my symptoms were better. When my plan was disrupted I had a set back and my inflammatory markers and symptoms got worse again, including getting an infection. Infections were treated and I'm back on plan. It will probably take a few months for my meds to get back up to speed.

The silver lining is that at least I now know it was working as long as I stay on plan. I hope you all get to the point where you are past the difficult and long diagnostic process and get finally to a treatment plan that works for you.

[arizona girl]

Hi Dave, my cardiologist ran a rather extensive diagnostic panel from the "Health Diagnostics" Laboratory. They have a website and don't charge me for what the insurance doesn't cover. It included the test for mthfr along with rarely done inflammatory markers. I turned out to be homozygous for it, the worst form. I can only process 10% of the folic acid or any other medication that follows the same pathway for conversion to the forms the body uses. What you can't process stays in the body and becomes toxic. For example if you have an autoimmune disease you can not take methotrexate, because it follows the same pathway.

There is a lot of research going on with it. The original studies center around birth defects and recurrent miscarriage. They are now finding it associated with cardiovascular inflammation and elevated homocysteine. It is also being studied in autoimmunity, autism and bipolar disease.

Folic acid is everywhere, especially any flour products and most multivitamins. I sometimes wonder if these gluten allergies might be due to the probably low quality vitamins that are put in all the enriched products out there. The good news is that it is not in organic products. I now take the active form of b vitamins.

[loot]

Losartan is an ARB (Angiotensin II receptor blocker), while those other drugs are not. What I am referring to is the drug class that Losartan belongs to which is ARB. The drugs contained in that class all end in -sartan ie Losartan, Irbesartan, Valsartan, Telmisartan, Candesartan and Olmesartan. What I am saying is that Losartan, while it has an effect, which clearly helped your son, imo is the worst by far out of all the ARBs. I never said Losartan was not effective, I just said its the worst of the ARB class which all essentially do the same thing. I'm not a scientist but I can point you to many real scientific studies and comparisons showing the other ARBs to be far superior - particularly Telmisartan, Candesartan and Olmesartan.

If Losartan is helping, then the other ARBs would help even better according to my research. You don't mention what your son's condition was but if you want to know more, I can point you to actual pubmed studies showing how Losartan is lacking in all kinds of areas, which you can approach a medical professional with with intention to switch to another. The surmountability described in the link I gave shows how Losartan's effectiveness will eventually wane. It depends also on the seriousness of the condition - its possible Losartan's effectiveness if enough. What dose is he on may I ask?

Hmm this subject seems to be my territory. First of all, in my opinion, Losartan is no good. The theory is fine but Losartan seems the worst of the whole drug class of ARBs. I've made extensive research on ARBs and that while Losartan has the most history and studies, to me it is the worst of them all. Here is a comparison of the ARBs:

http://bjcardio.co.uk/2010/05/comparative-arb-pharmacology/

Particularly the insurmountability of Losartan. Basically even if it does work, it will stop working soon enough - so in my opinion no good for the long term. This is an interesting theory but aren't ARBs supposed to be bad for people with POTS according to the website we are on now? http://www.dinet.org/what_to_avoid.htm

I'm not a frequent visitor to Dinet anymore because my son is so much better these days, but I do occasionally check in, and saw this post today.

Losartan has literally given my son his life back. He spent 3 and a half long years suffering daily with dizziness, fatigue, nausea, you name it. He went overnight from being a straight A student to being unable to attend high school. After 3 years of trying meds like Midodrine, Mestinon, beta blockers, Clonidine, etc., none of which helped him, we figured out that he has a nitric oxide deficiency and started him on Losartan (Cozaar). Within months, he was able to take SATs, pass a GED exam, get a part-time job, apply for colleges, and now he is a straight A student in his sophomore year (living in a dorm) at a prestigious university. He still has POTS, but Losartan makes it possible for him to function.

He has now been on Losartan for more than 2 and half years. Losartan is not a good drug for everyone, but it is a good drug for SOME. No two people have the exact cases of POTS and what works for one person may not work for another. Blanket statements that a drug is bad are not helpful.

[bellgirl]

Issie, I don't have EDS, according to my Rheumy, and Loot, Micardis saved my life in my early 40's, and prevented what could have been a massive CVA....that's Losartan, btw. I'm doing so much better, as well, so I'm not on as often either.

[thegron]

Hey just wanted to clear up a couple of things.

1. Micardis is Telmisartan.

2. ARBs actually decrease renal blood flow.

3. Bellgirl, I'm very glad you did not have a massive CVA!

4. Loot is correct in that the newer ARBs are generally better drugs overall. However, many clinicians still use Losartan because it is an older ARB which has a ton of data to support its use.

[KittyMama]

Hi everyone,

I have some experience that I think might be useful / interesting to people reading this topic.

I have PCOS (polycystic ovary syndrome), which as far as I know is completely unrelated to my Dysautonomia. For years I took spironolactone in a very high dosage for PCOS. For a long time it didn't bother me, but over the years my POTS/NCS (which were there before I took spiro) got a lot worse. Eventually it occurred to me that taking a diuretic might not be the best idea with this type of illness, and I stopped taking it. I experienced a huge improvement. Several times I tried going back on it at a low dose, but I always felt better without it than with it. Recently I tried it again for just a few days, and it made me so exhausted and ill that it took me weeks to recover. (I took it for probably 5-6 days on a low dose, and was sick for weeks after i stopped.)

Also... something important for guys to know: it's an anti-androgen, which means it might do things to you that are less than pleasant (like breast enlargement). It worked really well for my PCOS (which causes high testosterone among other things), so if I were a guy I'd be cautious with it.

Just my experience... I'm not telling anyone not to try it, but I would definitely be careful and go slow if I were going to try it again.

[RichGotsPots]

http://www.ncbi.nlm.nih.gov/pubmed/23266540

[thegron]

Spironolactone is indeed an antiandrogenic compound however, eplerenone (in the same class of drugs) has far fewer antiandrogenic effects and is still quite effective.

[bellgirl]

Thanks Rich... My dad and grandfather died of a stroke, at 71 and 46, respectively, and I will too, someday, but hopefully not anytime soon. Medication is what made the difference with my dad. He even had a cerebral aneurysm that burst and lived for 12 years after that!! They called him miracle man...he had to learn everything over again. I want to see some grand kids. I'm a great aunt 5 times, but still not a grandmother. I'm 56. That's on my bucket list. Life is a gift from God, and very precious to me! I am very careful with the meds I take, but I need every one of them for quality of life.

[blueroses79]

I have what's most likely hyper-POTS (sometimes orthostatic hypertension, sometimes hypo, always standing tachycardia), and have been on Spiro for a couple years for my skin.  Recently I dropped it because I thought my insurance was expiring, and my tachycardia got much worse.  Weirdly it doesn't seem to lower my BP much.  It's always in the same (slightly too high) range.  It certainly doesn't make me feel worse.  One reason might be that spiro increases potassium, and I have low potassium.  But it hasn't cured me, either.  I still have temperature dysregulation hot spells, standing tachycardia, and BP spikes and dips.  But my baseline HR seems lower on it, which is good.