julieph85 Posted November 30, 2011 Report Share Posted November 30, 2011 i was put on a metropolol ( a tiny dose by the way) when my symptoms first began. It made my orthostatic hypertension, chest pain, and dizziness soooooo much worse. It made me feel like I was in a constant adrenaline rush even from moving my muscles slightly. Why does it make things so much worse for some of us but helps others? I have orthostatic hypertension so you would think I would be in a the group it would help....I read something from Grubb that it causes unopposed alpha blockade as well so that could cause the hyper sympathetic response.... anyone else have thoughts? i feel like it is a key to the cause of the illness for some of us.... thanks! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted November 30, 2011 Report Share Posted November 30, 2011 It sounds like they dropped your bp way too low ( I couldnt tolerate them either). You then had adrenaline surges to bring your bp back up. Have you tried them with midodrine or florinef? That was the only way i could take them. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 30, 2011 Report Share Posted November 30, 2011 I am guessing that the BB actually caused some vasoconstriction that worsened your orthostatic hypertension AND also caused some pulmonary constriction resulting in your chest pain. I was shocked to learn that BB's can actually cause vasoconstriction! If your doc was wanting to relax your vasculature to lower your BP, maybe a calcium channel blocker would have been a better choice. BTW, Dr. Grubb's theory sounds good too- maybe a little of both? If you have any allergy or asthma issues, beta blockers are contraindicated. CCB's are better in that case- although I could tolerate neither. Hope you find something that helps-Julie Quote Link to comment Share on other sites More sharing options...
E246 Posted November 30, 2011 Report Share Posted November 30, 2011 Do you worry about the dependance on beta blockers. if you lower the hr with them it can be difficult to come of them. This really worries me.Any info anyone? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 30, 2011 Report Share Posted November 30, 2011 Sometimes we hyperPOTS sound sooo much like a pheo patient! I know that pheo people cannot take a beta blocker until they've been "blocked" with an alpha blocker first. I knew it had something to do with causing higher blood pressure, but didn't understand the mechanics behind it. I looked up, and on Wikipedia, it says this about pheo treatment. It sounds so much like us. That is why I keep having those "growths" on my adrenals retested and imaged every year. The red-highlighted is what really strikes me. I wish they would take those growths out of me so I could see if they made a difference. "Either surgical option requires prior treatment with the non-specific and irreversible alpha adrenoceptor blocker Phenoxybenzamine (Irreversible blockade is important because a massive release of catecholamines from the tumor may overcome a reversible blockade). Doing so permits the surgery to proceed while minimizing the likelihood of severe intraoperative hypertension (as might occur when the tumor is manipulated). Some authorities would recommend that a combined alpha/beta blocker such as labetalol also be given in order to slow the heart rate. Regardless, a "pure" beta blocker such as atenolol must never be used in the presence of a pheochromocytoma due to the risk of such treatment's leading to unopposed alpha agonism and, thus, severe and potentially refractory hypertension.The patient with pheochromocytoma is invariably volume depleted. In other words, the chronically elevated adrenergic state characteristic of an untreated pheochromocytoma leads to near-total inhibition of renin-angiotensin activity, resulting in excessive fluid loss in the urine and thus reduced blood volume. Hence, once the pheochromocytoma has been resected, thereby removing the major source of circulating catecholamines, a situation arises where there is both very low sympathetic activity and volume depletion. This can result in profound hypotension. Therefore, it is usually advised to "salt load" pheochromocytoma patients before their surgery. This may consist of simple interventions such as consumption of high salt food pre-operatively, direct salt replacement or through the administration of intravenous saline solution." Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted November 30, 2011 Report Share Posted November 30, 2011 Just a note anyone that thinks they may have mitochondrial problems, BB do interfere with the avilability of CoQ-10 into our mitochondria. Inhibition by statins and beta blockersCoenzyme Q10 shares a biosynthetic pathway with cholesterol. The synthesis of an intermediary precursor of coenzyme Q10, mevalonate, is inhibited by some beta blockers, blood pressure-lowering medication,[23] and statins, a class of cholesterol-lowering drugs.[24] Statins can reduce serum levels of coenzyme Q10 by up to 40%.[25] Some research suggests the logical option of supplementation with coenzyme Q10 as a routine adjunct to any treatment that may reduce endogenous production of coenzyme Q10, based on a balance of likely benefit against very small risk Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 30, 2011 Report Share Posted November 30, 2011 Could someone explain to me what it means "the chronically elevated adrenergic state characteristic of an untreated pheochromocytoma leads to near-total inhibition of renin-angiotensin activity, resulting in excessive fluid loss in the urine and thus reduced blood volume." ? Specifically, could we have an inhibition of the RAA system and why? I know we have talked a little about this before. Pheo people HAVE a reason to know why they have high blood pressure and low blood volumes. Has anyone else had CT scans of their adrenals?I am trying to understand this in context to my hyperPOTS, low aldosterone results a while back, and my low ADH. And the fact that I drink alot and urinate alot--most of my 24-hour urines reach 3500ccs. Also, I am one that cannot take any b/p meds, as I feel awful on them. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted November 30, 2011 Author Report Share Posted November 30, 2011 Sue, that is very interesting stuff. I thought for sure I had a pheo because of how similar my symptoms are to it but my 24 hour urince catecholamines always come back normal. My interpretation of this is that I must be over sensitive to the catecholamines instead of producing too much. Almost like I have alpha andrenergic hypersensitivity or something. I was put on labetalol when my symptoms first started. I didn't notice an improvement in my orthostatic intolerance but it did lower my bp. It tended to lower it too much at night though and I would get really low bp with bradycardia. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted November 30, 2011 Report Share Posted November 30, 2011 Sue, I've had CT's of my adrenals and they were normal. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 30, 2011 Report Share Posted November 30, 2011 Gosh Sue, you have me convinced that I have a pheo (the hereditary type) and I've passed it on to Mack. So sad when I read about pheos on Wikipedia. MOST go undetected the patient's entire life and are found at autopsy??? That's a sad sign of health care in our world Quote Link to comment Share on other sites More sharing options...
corina Posted November 30, 2011 Report Share Posted November 30, 2011 emma, i've been on bb's for about 10 years and even up to 300mg 24/7. last spring i slowly weaned off and got spells of severe tachycardia when exercising, climbing stairs, drying myself after showering etc. my cardio ran some tests and told me that it was due to weaning off of the bb's and it could take from 3 to 12 months to get rid of it. i learned to stop my activities when m hr went above 150 and wait until it got back to about 70. that worked very well for me and now i think i'm free of those spells.hope this helps corina Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 30, 2011 Report Share Posted November 30, 2011 Sue, I've had CT's of my adrenals and they were normal.Which Dr. orders a CT of the Adrenal, I want to try to get all my CT's done at one time? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 30, 2011 Report Share Posted November 30, 2011 This all come has to do with my theory on localized BP issues. BB affect BP througout the whole body, they are considered Vasoconstrictors. Since they funnel throughout the whole body they constrict in organs we don't want them to constrict to. For example asthma people have to be very careful because a BB can make their lungs constrict. A person without asthma wouldn't have to worry to much but the constriction could take place in a another organ of your body that is hypersensitive to constriction.. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted November 30, 2011 Author Report Share Posted November 30, 2011 Rich, but they do dialate the deep muscle vessels, that's parly what makes them lower bloodpressure. Their effect changes depending on which muscrinic fibers they are working on Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 30, 2011 Report Share Posted November 30, 2011 Rich, my endocrinologist orders my CT and orders my 24-hour urines.Julie, have you been tested for Celiac?? I've noticed quite a few celiacs on their forums had been diagnosised with RA, also. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 30, 2011 Report Share Posted November 30, 2011 Rich, but they do dialate the deep muscle vessels, that's parly what makes them lower bloodpressure. Their effect changes depending on which muscrinic fibers they are working onYes sort of, but that's my point. depends on the receptors they are acting on and BB cross the blood/brain barrier and so act systemically Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 1, 2011 Report Share Posted December 1, 2011 They can view your adrenals if you get a CT scan of your abdomen. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted December 1, 2011 Author Report Share Posted December 1, 2011 Sue, I've had the antibody tests for Celiac but not a biopsy. I need a colonoscopy very bad because I have horrible IBS/Chron's like diarrhea and constipation for the last 4 years. I'm so scared though to get the colonoscopy because of the propophol and not knowing what is causing my dysautonomia. I'm scared i'm going to have a tachycardia or BP problem during the procedure. But.... my gastroenterologist says i do need one, but he doesn't think i have celiac cause i don't have the antibodies. He thinks i have IBS or chron's, especially cause my dad has chron's and i have other autoimmune disorders Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 1, 2011 Report Share Posted December 1, 2011 Beta blockers CAN (in some instances) RAISE blood pressure & INCREASE vasoconstriction."Beta blockers must not be used in the treatment of cocaine, amphetamine, or other alpha adrenergic stimulant overdose. The blockade of only beta receptors increases hypertension, reduces coronary blood flow, left ventricular function, and cardiac output and tissue perfusion by means of leaving the alpha adrenergic system stimulation unopposed. The appropriate antihypertensive drugs to administer during hypertensive crisis resulting from stimulant abuse are vasodilators like nitroglycerin, diuretics like furosemide and alpha blockerslike phentolamine."http://en.wikipedia.org/wiki/Beta_blocker "Evidence also suggests that beta blockers should be avoided in the acute phase, given the propensity of some of these agents (beta blockers) to worsen coronary artery vasoconstriction and increase blood pressure." http://www.medscape.org/viewarticle/571652 "Acute treatment with a beta-blocker is not very effective in reducing arterial pressure because of a compensatory increase in systemic vascular resistance. This may occur because of baroreceptor reflexes working in conjunction with the removal of β2 vasodilatory influences that normally offset, to a small degree, alpha-adrenergic mediated vascular tone."http://www.cvpharmacology.com/cardioinhibitory/beta-blockers.htm Additionally, beta blockers CAN cause vasoconstriction in your lungs causing chest pain and are contraindicated in anyone with asthma or allergy symptoms. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted December 1, 2011 Report Share Posted December 1, 2011 Julieph, I had a colonoscopy and an endoscopy at different times since I've had hyperPOTS. I thought the prep for the colonoscopy was going to be a nightmare, considering we seem dehydrated. Actually, it went fine and did not make me lightheaded or anything. And, I did well with the meds and manipulation for both procedures. Go figure! Sometimes something as simple as a vitamin can do me in, but bring on the medical procedures and I'm fine!I'm a weird one, in that I have a positive celiac lab(way high), yet a negative biopsy. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 1, 2011 Report Share Posted December 1, 2011 Beta blockers can:Make vasoconstriction worse by leaving alpha 1 receptors unopposedReduce sensitivity of B2 receptors which are involved in vasodilation rather tahn constriction (inderal)Worsen cerebral blood flow and fatiguesupress renin responses worsening hypovolumia Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 4, 2011 Report Share Posted December 4, 2011 Mack's Mom,Good info Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 4, 2011 Report Share Posted December 4, 2011 Rama, do you have any type of list of other meds that reduce hypovolumia, that wouldnt be a bad list for all of us to have.. Quote Link to comment Share on other sites More sharing options...
E246 Posted December 4, 2011 Report Share Posted December 4, 2011 Do you know anything about Pindolol. it is a BB that's supposed to respond to adrenal output so if you have a slow as well as fast hr then it is perhaps safer?i was prescribed it but by a cardio who was very helpful but only seen one other pots patient.Bad reactions in the past make me nervous. But not yet found any medication.Interested in anyones opinion. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 5, 2011 Report Share Posted December 5, 2011 Here is a study that says BB are contradictory in pulmonary hypertension, even though BB are given for systemic hypertension http://thorax.bmj.com/content/65/5/454.abstract Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.