issie Posted December 20, 2011 Report Share Posted December 20, 2011 I recently tried Lorsartan. I was so sure it was going to be the right drug for me. It is supposed to widen your blood vessels and lower high blood pressures. I had an odd reaction.I don't know if it was something I ate or if it was the drug. But, I felt like I was having an allergy to it. It was the generic form and one of the other members who uses this said you have to get the name brand. But, my blood pressure went UP not down. I felt really nervous and trembly and my chest hurt and it hurt in my arm and jaw. I tried it for a few days and it happened every day. My blood pressure would be okay before I'd take it and then several hours later these were my results. I took Claritin, Tagament, Tramadol and Bentyl at night before bed and felt a whole lot better. I know that Lorsartan is supposed to increase NO (nitric oxide) but since it blocks angiotension II and potentially could lower aldesterone even further - wondering if since my aldesterone levels are already too low - this compounded the issues.Tramadol is a NMDA atagonist and it along with Bentyl have been my best find for my POTS symptoms. During my trial with the Lorsartan, I took no other supplements. So, only used the med by itself to see what the effects would be. I don't know if I used it long enough - but couldn't deal with the super high blood pressure that resulted or the terrible out of control internal shaky feel. I might lay off a few days and try it again.Any body got any thoughts on this?Issie Quote Link to comment Share on other sites More sharing options...
anna Posted December 20, 2011 Report Share Posted December 20, 2011 I found I had the symptoms you describe when my BP was supper high so might the symptoms you had be a symptom of very high BP and possibly not an allergic reaction per sa, I wander if your reaction to the Lorsartan was in fact a clue to what might be going on in your body?!! Does that make sense?!! I keep asking my children's Dr.'s to try and explain to me why a med might be causing weird reactions in my children I am sure that they way my children responed to certain med's must be some sort of indication as to what is going on, but it all seems to fall onto deaf ears where our DR.'s are concerned!!Issie is your renin level low as well?! I was just reading up on Lorsartan then I came across this http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2265.2007.02898.x/full) article about low renin hypertension. To be honest this has got me thinking again!!! I had Dr.s note down bouts of very high BP in my early to mid twenties! but as I moved about for work it was not really picked up on until my late thirties! I really do not think my hypertension it is just down to essential hypertension. Quote Link to comment Share on other sites More sharing options...
E246 Posted December 20, 2011 Report Share Posted December 20, 2011 How high is super high? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 20, 2011 Report Share Posted December 20, 2011 I think losarten would work in low flow POTS only and only chronically. That sounds like an adverse reaction which may indicate you have too much nitric oxide or vasodilation rather than the opposite. COuld the postural hypertension be an adaptive mechanism rather than the underlying problem in your case? Quote Link to comment Share on other sites More sharing options...
issie Posted December 20, 2011 Author Report Share Posted December 20, 2011 I wander if your reaction to the Lorsartan was in fact a clue to what might be going on in your body?!!Issie is your renin level low as well?!That could be the case, but not sure why the nitroglycerin would have helped me so much when I had my ER visit. But, it could have been because it was possibly Kounis Syndrome - activated by a histamine mast cell reaction. What was done for me was nitroglycerin, IV'S and allergy medicine. That pulled me out of it. My blood pressure was really high when I went into the ER and they/I thought I was having a heart attack - but felt that there was an allergy reaction going on too. That's what made me think that I must be low in nitric oxide since this helped so much. But, that is the treatment for Kounis Syndrome.Yes my rennin and aldosterone levels are very low. The kidney doc said almost non-existent.I'm sort of back to square one in my search - if NO isn't the problem. I know there must be a NMDA dysfunction (sensitivity to glutamates) because so far - the Tramadol/Bentyl is my best combination of things to help me. (Tramadol is antagonist to the NMDA function.) I also have the really high Noriepi levels. Of course there's autoimmune dysfunction and EDS and probable MCAD.Issie Quote Link to comment Share on other sites More sharing options...
issie Posted December 20, 2011 Author Report Share Posted December 20, 2011 Rama,What would high blood pressure be a compensatory reaction for? I'm trying to figure out what system would require the rise. It is possible - just thinking out loud. Maybe, the reason there are high's and lows are compensations for something. BUT WHAT???????Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 21, 2011 Report Share Posted December 21, 2011 low blood volume? neuropathic blood pooling? vasomotor nerve failure? or increased endothelial nitric oxide activity. Quote Link to comment Share on other sites More sharing options...
issie Posted December 21, 2011 Author Report Share Posted December 21, 2011 Just had a chance to read some of the article you listed. That is very good and it does show there can be an inherited component to this all. Since I do have low rennin and aldosterone the treatment suggested is spironolactone - but that is a diuretic. Seems like that would make us worse - if we're already dehydrated. I was suggested this as something to try to restore my hair. This is one thing that is used. I'd done some research on it and found out about it being a diuretic and basically dismissed using it because of that.I know I have some sort of kidney dysfunction going on - just these levels being low point to that. But, can't seem to figure out what direction to go with it. I saw a good Kidney doc at Mayo and he wasn't wanting to go any further unless my bp numbers got above 200/100. They aren't quite that high - yet. But, some of the time - my numbers are perfectly normal or too low. I'm all over the place with my blood pressure and it is very frustrating. Not to mention, I never know if I'll have a stroke or have the feelings of passing out. When it gets up there it feels like my eyes will pop out of my head - the pressure is horrible. I'm having more eposides of the highs lately and I don't like it. I don't know whether just try to press the docs at Mayo to address it or what to do. No one seems to know what to do when there are so many complexities. I've tried at least 5 kinds of beta blockers, this ARB and now all that's left to try is a calcium channel blocker. Running out of options.Issie Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted December 21, 2011 Report Share Posted December 21, 2011 Issy have you tried turmeric? Just curious with your reaction to Lorsartan. How is your supine BP? Is it only increased when standing or after activity? Lorsartan was the next drug I was going to push my doctor for, I'd like to hear from any others that have tried it also. Good luck, hope you feel better. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 21, 2011 Report Share Posted December 21, 2011 I believe a new medication for the opposite - for excessive nitric oxide or vasodilation in the stomach circulation is being trialled right now by Stewart and Medow.I believe its methylene blue? Quote Link to comment Share on other sites More sharing options...
issie Posted December 22, 2011 Author Report Share Posted December 22, 2011 Todd, I used to take Turmeric and felt it helped my pain. But, stopped when the nitroglycerin helped and thought that I must have too low NO since Tumeric is supposed to supress NO. But, since this med didn't do well - I think I'll try Tumeric again. Yes, my bp is high with being upright - it seems to go too low lying. Got any ideas?Rama, That drug won't work for someone with high blood pressures. It will raise the blood pressure. Thanks for the suggestion - but won't work for my symptoms. If you run across anything else - please throw it in.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 22, 2011 Report Share Posted December 22, 2011 In some the high blood pressure may be a compensatory mechanism. Its only in the very early stages of clinical trials anyway. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 22, 2011 Report Share Posted December 22, 2011 I cant quite work out whether tumeric only effects inductible NO or all NO. Some sources say one some say the other. Quote Link to comment Share on other sites More sharing options...
issie Posted December 22, 2011 Author Report Share Posted December 22, 2011 Well, I had another thought in regards to the Lorsartan. I know this is out of the box thinking - but what if I do have low NO and the problem with this drug is it lowers angiotensin - but my aldosterone and rennin are already too low. Maybe, there is still too low levels of NO - but this just isn't the right med for someone whose noriepi levels are too high. (I don't know that my angiotensin levels are too high - didn't get those checked. Just going according to the studies that have been done on it.)Also, Todd you asked about Lorsartan - one thing I figured out is it does increase the output/elimination of fluids and will lower the aldosterone levels. So, it probably would be necessary to take Florinef (a synthetic aldosterone) to keep fluid levels up - because there is a good chance you could get dehydrated with it. That's the problem with allot of blood pressure meds - they are diuretics. I can't afford to lose fluids - I'm always in a dehydrated state. It seems fluids don't seem to go into my cells right and it doesn't matter how much I drink - I feel dehydrated all the time. Not like a diabetic where I crave to drink - I don't. But, I have really dry hands and skin and if you pinch the back of my hand it stays up - like dehydration. It seems that with POTS and this particular drug - there will be side effects that another drug will have to be added to compensate for the loss of fluids. In the three days I took it - never pee'd so good. (I know, too much information.) But, you asked. LOL Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 22, 2011 Report Share Posted December 22, 2011 Interesting observation. Oh well. At least you were brave enough to give it a go. Quote Link to comment Share on other sites More sharing options...
anna Posted December 22, 2011 Report Share Posted December 22, 2011 I was put on Valsartan plus a CCB many years ago due to persistent high postural BP swings in the 180/110. I was asked to try Nitro tabs as BP was getting too high and I also had bad Raynad's type symptoms unfortunately the Nitro gave me such bad pressure headaches I could not move my head down as it felt like it would explode so I stopped that med, any way it only brought my BP down very very little, not worth the pain! Now this is the thing that makes no sense to me really; a combo of the Valsartan and CCB lowered my BP moderately while I stuck to a very strict low sodium diet, then my children where diagnosed with OH and POTS and we where told to salt load! Well I could not be bothered to cook separate meals so I just ended eating the salt loaded food as well. Well after a short while of this my BP started to drop to a 'good' level, if I lower my salt intake my BP goes up!!!! Makes no sense to me. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 22, 2011 Report Share Posted December 22, 2011 yeah its interesting - sounds like your high BP is like mine - a compensatory mechanism. Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted December 23, 2011 Report Share Posted December 23, 2011 My high blood pressure is definitely compensatory. Every time I get IV fluids the doctors always shake their heads because my blood pressure actually comes DOWN. ....not your typical response. Quote Link to comment Share on other sites More sharing options...
anna Posted December 23, 2011 Report Share Posted December 23, 2011 We are an odd lot are we not!!! Quote Link to comment Share on other sites More sharing options...
issie Posted December 23, 2011 Author Report Share Posted December 23, 2011 Rissy,What do you think your high bp is compensating for?Issie Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted December 23, 2011 Report Share Posted December 23, 2011 Hey Issie!In my case I think it's secondary to relative hypovolemia caused by venous pooling and denervation. Quote Link to comment Share on other sites More sharing options...
Lenna Posted December 23, 2011 Report Share Posted December 23, 2011 Todd, my son has been taking Losartan for the past year or so (actually, he is on the non-generic Cozaar, which seems to give him much more relief from his POTS symptoms than the generic Losartan.) He has low-flow POTS and this is the first medication that has helped him at all. It was pushing his bp too low, so he is on a bit of Florinef too. It has helped his brain fog tremendously, and has helped his energy somewhat. He is able to do some exercising now and has been able to put together college applications - something he would NEVER have been able to do a year ago. He still has a ways to go in his recovery and we're searching for the next therapeutic step, but overall Cozaar has been a lifesaver for him. Quote Link to comment Share on other sites More sharing options...
issie Posted December 23, 2011 Author Report Share Posted December 23, 2011 Lenna,I know, I wish it would have been equally as good for me. I did notice that I had better brain function with it. But, the high bp's and chest pains I couldn't take.Issie Quote Link to comment Share on other sites More sharing options...
issie Posted December 23, 2011 Author Report Share Posted December 23, 2011 Lenna,Just wondering does/did your son have high noriepi levels?Issie Quote Link to comment Share on other sites More sharing options...
anna Posted December 24, 2011 Report Share Posted December 24, 2011 I am thinking it has something to do with either small vessel (Arterioles) in vital areas or vasospasm's of some sort.For a long time I have been thinking my families ANS dysfunction stuff might be due to micro bleeds, for example some bleeding in the adrenal glands could theoretically lead to scaring or blockage of the network of blood vessels supplying the Adrenal cortex thus we might show Addison's type symptoms.The adrenal glands and the thyroid gland are the organs that have the greatest blood supply per gram of tissue. Up to 60 arterioles may enter each adrenal gland. (http://en.wikipedia.org/wiki/Adrenal_gland). In addition, unilateral adrenal hemorrhage is associated, albeit infrequently, with otherwise uncomplicated pregnancy, neurofibromatosis 1, or long-term nonsteroidal anti-inflammatory drug (NSAID) use. There have been rare reports of idiopathic, spontaneous, unilateral adrenal haemorrhage. http://emedicine.medscape.com/article/126806-clinical#a0218Issie I recall you mentioned Nutcracker syndrome, I have thought this might have the same micro bleed component. For many years both my boys have had both gross and micro hematuria, as one of my boys had a number of bouts of quite frank bleeding (weeing lots of blood) he was sent to a urologist for a work up, the only thing the Urologist could put this down to was bleeding due to his EDS! The Dr. explained that he had contacted other Dr.'s and discovered that EDS did cause this type of bleeding. After some reading around I came across Nutcracker syndrome and wandered if this was in fact what was going on!!! Quote Link to comment Share on other sites More sharing options...
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