nmorgen

Sorry to hear that. Maybe he is thinking it might take longer for your body to adjust to the new medication and that you need to give it time to work. Other than that I can't think of a good reason to not take your blood pressure. Ive never had any of my doctors tell me that. I also tended to get stroke level high blood pressure, so it was a necessity for me to take my blood pressure. I have to say that before I was diagnosed I went through 4 different blood pressure medications in a 4 month period. When I would have an POTs norepinephrine surge none of them worked and I would get crazy blood pressure like 175/159 and 160 pulses. I'm assuming you aren't having huge bp spikes and he still thinks it's in a relatively safe range. The real thing is do you trust his judgement? I know we all have to experiment with medication to find out what works for us, but if it isn't working and you aren't feeling better you need to pick your own timeline for when you decide that this regime isnt working and it's time to try something else. No sense in staying on medication that doesn't improve your life.

Congratulations! I hope your pregnancy goes well. Hopefully the extra blood volume from pregnancy will make you fell better.

I would suggest a fan, fountain or one of those machines that makes white noise or ambient sounds. Homemedics has one for $18.00 at WalMart http://www.walmart.com/ip/HoMedics-Sound-Spa-Machine-with-Timer/2686012?sourceid=1500000000000007346330&ci_src=14110944&ci_sku=2686012 . I use the fan and it helps me fall asleep. Just relax and concentrate on the sound.

Yeah, I was talking about phentolamine. It was the drug used in the study to suppress norepinephrine. It was also used in a study on POTs by the Mayo Clinic. They used it to determine that the blood pressure spike after valsalva manuever was actally caused by hyperadrenergic response. I was reading about the heart producing it's own renin to create Angiotensin II. It seems that our Mast cells throughout the body have an ability to create renin. I do find it interesting that Vanderbilt did a study on MCA and hyper POTs. Maybe this could also be a key piece to our problem. I agree the endocrine system seems to be the most complicated, and there are still so many things that they don't know about or understand. I'm not sure about supplementing with K. I think the point would be to have our bodies produce renin not just the aldosterone. The Vanderbilt article also mentioned that we don't release sodium through our urine like normal people do. So for some reason our bodies are retaining the sodium. That may help explain why we having standing hypertension. I do know that at my first ER visit with POTs my K was low, and I started taking a K supplement. Subsequent ER visits always showed my mg and vit D being low. I read several posts on this forum from last year talking about hyper POTs and blood pooling. Someone posted that true hyper POTs people should have severe vasoconstriction from the norepinephrine and no blood pooling. I don't have blood pooling. I might have a little in my feet sometimes b/c they can turn red, but I do not have blood pooling in any of my extremeties. That being said the Vanderbilt study did say that the average person lost 14% of their blood plasma after 30 minutes of standing and that hyper people lost almost double that amt of blood plasma. I'm assuming that would probably be true if our bodies weren't producing enough aldosterone and renin. The flood of norepinephrine suppresses renin production, and it also seems to effect LXRs in our liver. That was my thinking behind phentolamine. It would allow norepinephrine to stimulate instead of suppressing and it would also relax the blood vessels. I'm just curious to know if anyone taking clonidine has had their standing norepinephrine levels checked. Did it actually lower the amount of norepinephrine to more normal levels? If the levels aren't within normal range then it would seem that both the kidneys and liver wouldn't be able to function properly. I know since my symptoms have gotten bad that I have had problems with my kidneys and liver. Since the LXRs are also involved in glucose metabolism I'm wondering if that is why I am now insulin resistant. If the norepinephrine levels are still too high it doesn't look like lowering the salt would actually help that much, b/c norepinephrine suppressed renin even with sodium deprivation. As I mentioned before the question is really which came first the norepinephrine surges or the kidney malfunction. If the norepinephrine surges were caused by the kidney's not working properly then the lower salt should still stimulate more renin production than a high sodium diet. If the norepinephrine is being released for another reason, then getting those levels down to a more normal level should get the kidneys functioning properly with a normal sodium intake. I guess I'll be the first guinea pig and lower my salt intake and see what happens.

Hi Jana, I also went from dressing and showering everyday. Now I take a shower and wash my hair every other day. I also let mine air dry unless its cold and I have to go out. I do wear makeup when I go out. I mix a foundation and moisturizer. Unfortunately my face is usually always red, so it is necessary to wear foundation for me. I've got the loungewear too, lol. I do try to go out at least 3 times a week. I've joined some church activities so I make myself go. You arent alone. Best Regards, Natalie

That was the thinking I have - if you haven't read "Out of the Box Thinking" - that's where I was going with the original thought. I think the salt may absolutely be the wrong thing. It will cause aldesterone to be non existant. It ups the fluid volume, but aldesterone is what is supposed to regulate the salt and fluid. I think if we replaced with aldesterone - that may be a better alternative than lowering it even more with salt. BUT, one of the links that D had me read said that aldesterone can be inflamatory. Salt is anti-inflamatory. Maybe the balance between the two makes a neutral????? But, if we did replace the hormone - it would need to be in a transdermal form. Because we want it uptaken and if it goes through the liver, there is a chance it won't get into the blood stream - because of faulty liver function. (If you haven't read that post - there's alot of info in there. Also, the follow up one is "Aldestrone and renin". Actually issie it seems from the study above that the liver X receptors are also affected by an adrenergic state. If you look up the function of the liver X receptors they control a lot of body functions including renin production and glucose metabolism. I feel like I'm in that age old question, which came first the chicken or the egg. If norepinephrine is causing the cascade of problems then I would think that phentolamine would correct that problem. In the 78 study they used phentolamine with high levels of norepinephrine and it started the renin production. I am on clonidine and from my knowledge it is suppose to supress norepinephrine levels. So I should be better, but I'm not. Maybe my norepinephrine levels aren't normal or even close to normal. The only other way to stimulate renin release would be to lower sodium. Even if there is a problem with our beta receptors in the kidneys lowering the sodium shold still stimulate renin production. The only other problem would be if we are missing something involved in production of renin. I'll be looking into that a little further. I also found an article that states the mast cells in the heart have been found to create renin. I still think that it might be worth trying a low sodium diet just to see what happens.

I found another interesting article http://www.ncbi.nlm.nih.gov/pubmed/16007255 The renin-angiotensin-aldosterone system controls blood pressure and salt-volume homeostasis. Renin, which is the first enzymatic step of the cascade, is critically regulated at the transcriptional level. In the present study, we investigated the role of liver X receptor alpha (LXR(alpha)) and LXR(beta) in the regulation of renin. In vitro, both LXRs could bind to a noncanonical responsive element in the renin promoter and regulated renin transcription. While LXR(alpha) functioned as a cAMP-activated factor, LXR(beta) was inversely affected by cAMP. In vivo, LXRs colocalized in juxtaglomerular cells, in which LXR(alpha) was specifically enriched, and interacted with the renin promoter. In mouse models, renin-angiotensin activation was associated with increased binding of LXR(alpha) to the responsive element. Moreover, acute administration of LXR agonists was followed by upregulation of renin transcription. In LXR(alpha) mice, the elevation of renin triggered by adrenergic stimulation was abolished. Untreated LXR(beta) mice exhibited reduced kidney renin mRNA levels compared with controls. LXR(alpha)LXR(beta) mice showed a combined phenotype of lower basal renin and blunted adrenergic response. In conclusion, we show herein that LXR(alpha) and LXR(beta) regulate renin expression in vivo by directly interacting with the renin promoter and that the cAMP/LXR(alpha) signaling pathway is required for the adrenergic control of the renin-angiotensin system.

In the '78 study they used phentolamine with high amounts of norepinephrine to restart the renin production in the kidneys. If it's the high level of norepinephrine that is casing our renin prodction to fall, couldn't phentolamine be used to correct our renin prodction problem. The study also went into sodium deficient and effects of norepinephrine on renin production and sodium replete and norepinephrine effects on renin production. I'm thinking maybe we should be cutting down our salt intake from looking at this study. I have been salt loading since I was a teenager, and maybe this is why I have gotten so bad.

I found another interesting article. It's from 1978 http://www.ncbi.nlm.nih.gov/pubmed/215928 Here is another article from 1986 http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T1J-479M05G-1D7&_user=10&_coverDate=06%2F24%2F1986&_rdoc=1&_fmt=high&_orig=search&_origin=search&_sort=d&_docanchor=&view=c&_searchStrId=1454701035&_rerunOrigin=google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=93dbb60d2cae2456d9798876a3068519&searchtype=a I guess I need to sign up to some of these medical publication sites to get full articles and really understand more about this.

I dont know if I ever had bad reactions to vaccines, but I know that I did have a bad reaction to a blood transfusion. I know the person had yellow fever at some point, and they think that I had contracted a minor case of it from the antibodies in their blood. For several years after that I would get mono every year, like clockwork. Nobody else I knew would have mono, just me, so I don't think that I just happened to catch it every year from an unknown source. It always hit me in July, so that it would ruin my summers. There is a good possibility that this has an immune component. I believe the renin issue affects those with the hyper POTs. It's really quite strange, bc norepinephrine should stimulate renin release. The juxtaglomerular apparatus secrets renin in response to: Beta 1 adrenergic stimulation Decrease in renal perfusion pressure Decrease in NaCl absorption in the Macula Densa Well, I found this article, but it's from 2004 Controlling the release and production of renin P. B. Persson, A. Skalweit, B. J. Thiele The major stimulus for the release of renin from the vesicles in juxtaglomerular cells is determined by stretch, as induced by changes in arterial pressure. The production of renin underlies a vastly complex control network, which takes place at different levels, such as transcription and translation. With regard to transcription, important regions for binding transcription factors have been identified several years ago, but the conservation of nucleotide sequences throughout different species suggests that there might be additional binding regions of importance. At the post-transcriptional level, the modulation of renin mRNA stability is seems pivotal. The half-life of renin mRNA appears to be controlled by the interaction between several regulatory proteins, most of which are well known in other systems. Moreover, in addition to the modulation of mRNA stability, the translation efficiency seems to play a key role in determining the amount of renin to be produced. I can't find anything newer than that on renin. Maybe, we aren't having a problem with releasing renin, but maybe there is something wrong with our bodies ability to actually make renin. Or, maybe our beta receptor in our kidneys arent functioning properly or we just dont have them. If renin controls aldosterone, which in turn controls NaCl and fluid volume, that would explain our problems with hypovolemia, blood pressure and pulse rates. It's just a waterfall effect. Our bodies are dumping norepinephrine to get our kidneys to respond properly. It would be interesting to see which one is causing our problem. Is it a lack of beta receptors or are our bodies lacking something in the prodction stages of building renin. It could be that all of our nervous system problems are caused by the huge amts of norepinephrine, and in reality we are really having problems caused by our kidneys. If it's a lack of beta receptors i wonder if a transplant of a normal kidney would resolve the issues. Here is an article about imaging renin synthesis http://www.sage-hindawi.com/journals/ijht/2010/298747.html maybe one day they will be able to apply this to humans. It's interesting that renin is still such a mystery. There are just so many possibilities to what is causing POTs. I do know that I don't do well on antibiotics of any kind, so I don't think that mine is cased by an underlying infection. I am just hoping for the big aha. I do know that though I can control a lot of my symptoms, it isnt making me any better. It makes life more manageable, but I'm not getting better. PS. Sorry but this is too long for me to spell check, so forgive all of the typos and rambling.

Hi, I have the same issues with over stimulation. It got to where I couldnt even watch a movie anymore. I dont zone out when this happens. I tend to get anxious and feel like jumping out of my skin. It has gotten a little better over the past year, but I still have problems. Crowds don't really tend to bother me, but bright flashing lights do big time. Maybe you are experiencing a little anxiety in crowds that might be making your POTs symptoms worse. I also have an inner ear problem. Mine is utricle damage, so no therapy will help me unfotunately. I had a myriad of tests; I don't know the names, but I can describe them. I know I had the sensory organization test, where you stand on a platform that they tilt and then it quickly moves out from nder you. I had the test where you are in a moving chair in the dark and they flash lights at you. I also had a test where you wear a headset that measures your eye movement as they blow hot and cold air in your ears. From all of the tests they said that my rt utricle wasnt functioning, and that they had been seeing this in soldiers affected by ied blasts. I have no idea how my tricle got damaged, maybe it was my car accident. I do find it interesting that a lot f us have vestibular problems. Maybe they'll find the connection one day.

I have this happen to me. I found that using an extremely flat pillow or no pillow at all helps. I also lift my chin up to keep the airway open. You can also try lifting your chin and turning your head a little. For some it could be a blood pressure drop, but for me that isn't what is going on. If you haven't had one, you might need to get a sleep study. I had one, but I didn't need a machine. I hope you find something that works for you. Good luck.

I agree with you Reen. I think they just said hey let'spick a drug with one of the lowest usage rates and we will go after them, no one will notice. Not even taking into consideration that there is no alternative. They didn't think that everyone taking the drug would bombard them, the media and their representatives with letters and complaints. Without that attention, midodrine would probably be on it's way out.

Hi nowwhat! I have the hyper POTs. I can't take beta blockers because I have asthma, so I cant give any advice on that. I do tinker with my meds, not everyday, but when I need to I do. Im only using clonidine right now for my POTs. I have to use more in the winter to control my hr and less in the summer. I also take a little more when Im in a very hyper state. I've started exercising more and it has dropped my hr and so I am taking less clonidine now. My cardiologist told me that it was fine to adjust the dose based on what my symptoms were doing. I dont really feel well when my hr drops too low. I guess Ive gotten so used to it being high that what would be considered normal is just too low for me. I also think that just dropping my hr really isnt solving the underlying problem with what is going on, and that is why I feel so bad if my hr drops too low. Good luck on adjusting your meds. I hope you find something that works for you.

Hey, don't give the folks at the FDA any ideas! They might be trolling the site after all of the emails they've been getting, lol.

The bp was after working out. I think the exercise is doing it's job to stabilize my pulse, but the clonidine is dropping my pulse even lower and my bp is increasing to compensate. I was just wondering if I should reduce the clonidine and see if my pulse will stay at a more normal level and get an idea of what my bp is going to do. I think that if my pulse didn't drop so much that my bp would stay within normal range. The idea is to eventually be able to come off the clonidine with exercise. That at least is what my cardiologist has in mind.

I've written to everyone that I can write to, but I haven't received any responses. Maybe the shear volume of letters will make the FDA rethink their plans for pulling midodrine. If I needed a medication for hypotension I couldn't use droxipoda anyway as I have hyper POTs and don't need an increase in norepinephrine.

It probably is EDS related. The vascular type is way dangerous. Most people with it die very young. So it's a good thing that you have had so many surgeries. It probably means you don't have the vascular type. I have major surgeries also, so I feel pretty certain that I don't have that type either. I haven't been diagnosed, but I'm pretty sure that I have either hypermobility or the hypermobile EDS. My hips and ribs are the worst for me. My hips sublux and I have to pop them back into socket. It can be very painful. One of my ribs also feels like it does the same thing and I can crack my chest, which feels strange.

Hi Ashelton80, Maybe you could try taking half or even a fourth of the dose of beta blocker. If you feel it could help you it's worth a shot. It sounds like you have hyper POTs. I thought that salt loading doesn't really help the hyper POTs. Good luck. I hope you start to feel better.

Issie- I read one of your posts about aldosterone and renin. I noticed that you have had a lot of surgeries. You probably don't have vascular EDS. Surgeries for that type of EDS is almost impossible b/c the veins tend to shred.

How interesting. I bet I have read this, just spaced it. Have you read my two threads on "Out of the Box thinking and More on Aldosterone and Renin"? I just recently did alot of research and posted it here. You might find it interesting. Yeah, your question about lowering sodium is discussed in my research articles here. I've read about coconut oil being so good for you. I think I will try that one. I can't take flax - allergic. Thanks for the info. Let me know on my post what you think after you read them. Issie P.S. This could explain why my sodium levels are always too high - even without extra salt. I'll do a search and read up on your posts. I started taking the coconut oil to combat my chronic UTI infections b/c of it's lauric acid. I haven't had an infetion in a few months, so I'm going to continue with it and hope for the best. I use the organic and I usually cook with it instead of taking it as a supplement. Though I did find melting it with chocolate to be a good substitute for a mounds bar.

Okay, I found the article. Here is the excerpt I was talking about: In normal subjects, about 14% of the plasma volume may leave the blood within 30 minutes of standing. This loss of plasma volume into interstitial tissues is greatly enhanced in patients with OI; occasional patients will lose more than twice this amount of fluid. It is little wonder such patients with supine hypovolemia to begin with develop symptoms in a setting of this excessive dynamic orthostatic hypovolemia. Normal subjects reduce urinary sodium excretion on assumption of upright posture, but patients with OI do so ineffectively. This probably contributes to the severity of their hypovolemia. In patients with florid symptoms of orthostatic intolerance in a setting of hypovolemia and increased plasma norepinephrine, several interesting findings emerge. The plasma renin activity and aldosterone are generally slightly reduced in proportion to the degree of the hypovolemia. This suggests that the reduced renin level may be responsible for the hypovolemia. It is possible that impaired sympathetic innervation of the juxtoglomerular apparatus in the kidney may underlie this renin deficit. Hmm, I didn't even notice the bit about us not reducing urinary sodium. Makes me wonder if I should be reducing my sodium intake. Oh, here is the link to the article http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788 It was a Vanderbilt article. I wish that I had gone to Vanderbilt for some testing. Oh well, you know I was wondering if taking baking soda would help. I have read that it can help with hypovolemia. Maybe just a pinch in water. I would try to get the genetic testing for the vascular EDS. I would think that if you had TIAs it would be to your benefit to take a baby aspirin. Talk to your Dr just to be sure. Who knows, maybe you'll feel better. I am taking flax seed oil. It doesn't seem to bother me as much as the fish oil. I'm not sure if it has the same blood thinning properties. I started taking coconut oil and it has helped with my extreme dry skin. I also use it directly on my skin, which helps.

@nmorgen I have not been diagnosed with a specific type of POTS. I couldn't find anyone in Europe that could perform the supine/standing catecholamines blood test, but my blood pressure doesn't get high, so I am 90% that I don't have the hyperadrenergic type as that is a very good indicator. Like you I feel bad when my pulse is in the normal range (low for us, but 80 moving around is normal for normal people). It's too bad D-r Zia didn't bother to categorize my dysautonomia, he seemed so happy with himself that he found "autonomic dysfunction" and won't give me the record of the TTT, so I can take it to someone who can go beyond a Dx that I can find on Google )))))) I strongly feel that once an autonomic disorder is found, doctors need to dig deeper to find the underlying issue. For example, I spent quite a bit of time on this forum last November, getting increasingly depressed from the stories of people getting worse. BUT, there are those with underlying mitochondrial disease (not curable at the moment), those with thyroid issues, those with EDS, those with viral onset, etc. While we all have POTS, it is not wise to base one person's outcome on comparing them with someone who has a completely different underlying issue. You know I had the same problem when I joined in 2008. I hadn't been diagnosed yet, but they said that I was symptomatic from my neuro TTT or poor man's TTT. My login was different, I was naltiner then. I just couldn't bring myself to get back on the forum it was so depressing to me. I came back this past year and felt a lot better about reading the forum. I couldn't remember my old password and by then I had changed email addresses. I agree that most people have a lot more going on than just the POTs. I have read that the hyper POTs can be genetic, and I have noticed symptoms in my oldest son. He gets really dizzy and has to lay down on the grass if he plays too hard or does anything on the monkey bars. He is now salt loading and drinking lots of water and it seems to help. I just wish there was more funding for POTs, so that we could find out what was going on. I definitely think it's sad that they hand you a diagnosis, but have no real clue how to really help. I do think it's interesting that we had the same symptoms. Your the first person on dinet that has experienced the same thing as I have. I was thinking when it happened that maybe the POTs had just gone away, but I felt really bad at the same time. My pulse stayed really low for about a month. It wasn't that it was just low, but it would only go up about 15 b/m after standing, walking and everyday activities. My pulse was completely normal. My bp was a little high. Here is an excerpt from my original post: I was wondering if anyone else has had a drastic drop in their pulse, but high blood pressure. The past 2 weeks I haven't been feeling very well. My pulse has dropped into the seventies while standing, but my blood pressure has been high and variable ranging from 150/105 to 119/88. I've been having headaches for the past 2 weeks, I'm sure they are caused by the blood pressure. My hands also turn bright red and swell.

I feel the same way. I wish that we had more "fire power" as you say. I pray for it, because without it we can't really get effective treatmet or research. I guess if you have the POTs that they claim will just go away in time, then your lucky and I hope it truly does go away. I'm stuk with the hyper POTs, that I will have to suffer through for the rest of my life. I'd like more research to find out what is causing this and treatments that will actually help me get better, not just mask the tacchy, but leave my body with the same problem. I also think that there are a lot more people suffering with this out there, being told they have anxiety or mental problems. I'm sorry this has got to stop at some point. The Komen Org wasn't started by Drs. It was started by 1 woman who's sister died from breast cancer. It is now one of the biggest cancer organisations there is. Would it help if some billionare's daughter got POTs, I'm sure it would, but I don't think that we should have to wait for that to happen. I have been contemplating this for about a year. Starting a non profit. I think if we are to move forward this will have to be done at some point.

So glad you found a good exercise program. I also agree that our bodies were made to move. I think that if we can stay conditioned it might help keep the POTs at bay.