Elegiamore

So how do you get a prescription for xanax without your pcp or specialists stating that you are just a nervous ninny? That it is addictive and you don't need it...or miss, do you think you are just worrying unnecessarily about your illness, blah, blah, blah? And...the only way around the sleep issues IMHO is a sleep doctor. I haven't slept over 3 hours/night for many months. My BP was 196/110 give or take 3 points for days on end. Then my sleep doctor knocked me out with a very high dose of restoril (I'm already on remeron and trazadone plus magnesium to sleep; with nothing I do not sleep at all - went 9 days with no sleep). Wham! I slept EIGHT HOURS!!! When getting up, my bp was 125/85!!!!! Worth a trip to the sleep doctor IF you can find a decent one. Yet I had a bad reaction to the Restoril and have had to stop. What a mess this POTS is!

How ridiculous - also on Trandate oral maxed out daily. Again, any ideas/suggestions? TY

I have had hyper POTS for 30 years (my entire adult life). Last year I had two heart attacks that were caused as prinzmetal angina. Which simply is endothelial cell function to the point that my coronary arteries completely close off. I have attacks without MIs often. Nothing helps but an IV at the ER of Trandate (part alpha blocker and part beta blocker). I am already on .5 mg of clonidine (yes, a massive overdose) and maxed out beta blocker PLUS saline IVs twice a week. Not to scare people, but this is what can happen. Now - anybody with any ideas of how I can reduce these events? And how I can get my primary care to believe it can happen again and is happening at home? Of course, this never happens on a doctor appointment. Went to the ER on Tuesday with very high BP, prinzmetal angina and SOB. Cardiologist said "we need to restrict your fluid" - !!! I pointed out that I had a PORT where I got saline twice a week which had reduced the events significantly. He then told me I was imagining the SOB and my BP was 190/100 lying down and that was acceptable to him! Then he sent me home. Any ideas how to handle the illness AND the ER? Thanks for this thread.

My leg burning happens at the end of showering when I wash my hair. Looked it up and it appears it is a sign of lack of blood flow to the skin. A few weeks ago it was so bad that my legs gave way and I just hurled myself onto the bathroom floor, taking the shower curtain with me (shades of Psycho!). So high adrenaline draws blood to muscles, heart, etc. and away from the skin, which leads to the burning sensation. Sorry I'm not feeling up to finding the article on this for y'all. I also agree that the MAST cell issue could be involved - but I always have crimson red extremities when this happens and can tell the difference. I hope this improved for you soon - it's very painful and that obviously just perpetuates the NE cycle.

My sympathy for the terrible situation you are in. You are thinking this through carefully and I feel you will make the right decision for your situation. My experience: I worked on and off for 20 years with hyperadrenaline POTS and very severe ME/CFS (I am now middle aged but been sick since 19). I cannot count the leaves of absence or times I was fired for too many days out "sick." My work record was so ruined that nobody would even consider hiring me, even with wonderful letters of reference. I started a business with family members as my last option, which was successful. In MY CASE (this is an individualized disease as we all know), the more I worked the sicker I got. Each leave I would finally feel good, go back to work and start it all over again. I only did it because I NEEDED AN INCOME and I need HEALTH INSURANCE. Dr. Raj at Vandy told me he only has a dozen patients out of over a 1000 that are as sick as me. Can't help but wonder what would have happen if I had "retired" at 26 when the 200/100 blood pressure started. Stupid me. As for SSDI (gov. disability) even as sick as above, including multiple heart attacks from coronary spasms caused by NE rushes now, it still took 20 months to get the FIRST yes or no. And I got a "yes." But it took 20 years of documentation and letters stating my time was very limited from the head cardiologist at Emory University. GOOD LUCK! LISTEN TO YOUR BODY and not those around you is my best advice.

Yes, I can honestly say that clonidine patches (Catapres transdermals) have saved my life. I have consistent reduction of norepinephrine instead of ups and done from oral clonidine. For hyperadr. POTs, I can't think of any better approach. At least for me. First of all you usually need to be taking beta blockers with them. Downsides are: they are very expensive; many folks are allergic to the paste on them - they leave a burn mark on me (and really hurt) unless I put them on the tops of my arms - chest skin is very sensitive. However, after 13 years of using the patches, my arms are so tough that they do not absorb the clonidine, so I just put them on my chest and let them hurt. An additional benefit of consistent, large clonidine doses has been a significant reduction in muscle pain in my case. My neurologist believes that what we thought was fibro pain is really complex regional pain syndrome, a pain condition that is triggered by an overactive sympathetic nervous system. The clonidine squashes that reaction in the nerves and the pain (for me). Once you have had the release from the adrenaline roller coaster with a catapres patch, you will never want to go back, IMHO. Feel free to PM me if you have more questions. Best wishes, Elegiamore

To make IVs affordable, you need to go to a oncology or infectious disease clinic and become a patient. Many of them have infusion centers are part of their office and they then bill the infusion to insurance via their doctor office as an inhouse treatment. MINE ARE FREE if done at doctor's office (I have Blue Cross BS). The oncologist said "what is your blood condition" and I said "hypovolemia and low blood red cell count" and that got me in the door. If I had said "I just need help with saline infusions" they would have hung up the phone. Also, I called the infectious disease physician where I have been treated for shingles and genital herpes for 10 years; he had seen the effects of POTS in me and other CFS patients - that got me into THEIR infusion center. It took about three months of IVs once a week for my blood volume to "catch up" sorta and feel the results. This helped me reduce my very high blood pressure and gave me more pep for about half the week. I then tried going two times a week and had great results in bp and syncope control However, all my veins gave out in only five months. I got a central line PORT instead of a PICC line, as PICCs have to be pulled out eventually and I will never had vein access again. Also note that if you use a PICC line or port, you will have to use heparin, a harsh drug with a high acidic balance that can flair up allergies. The vein access is the best if at all possible, IMHO. And remember you can gather up paperwork from important POTS doctors and then petition your insurance company to cover your IVs if you can't get that to happen. It took me five years and lots of hospitalizations to get them to cover it for me, the fools. Good luck

OK, I have had POTS since I was 20 years old and am 55 years old. I am an advocate that has traveled the US for treatment. If you are OK with hearing what can happen after 35 years with this (it is ugly), scroll down. If it will upset you, I suggest you don't. PS - firewalker's pots doctors are not giving her any ideas on the kidney failure, which I find appalling. I keep her in my prayers. I didn't get significant cardiac symptoms until I was 27 - tachycardia, low and high bp, constant hospitalizations for dehydration. Had to stop working at 36; starting syncoping at 39. Lost all blood pressure control (swings of 90 degrees sitting and standing) at 44. Heart failure, stage two, at age of 53, unable to breath well lying down or do stairs now, and now... I have SEVERE left ventricular diastolic dysfunction, two heart attacks so far this year from coronary spasms, continued coronary spasms called prinzmetal angina that are caused by too much norepinephrine, lost my hearing to the high blood pressure and wear hearing aids, car wrecks blacking out with POTS, fluid around my heart, shortness of breath, falling often (vertigo and balance and I syncope) and the rest of the crap we all deal with. I have had to have surgery on my rectum as it continuously rips from IBSyndrome from POTS. I was hospitalized so many times for dehydration, starting in 1990, that I gave up and now get IVs twice a week. I have shingles approximately five times a year, every year. I developed hyponatremia and almost died. I was in the Cleveland Clinic seeking treatment for this for nine weeks with no avail. I had to again get saline IVs to stay alive. I have complex regional pain syndrome in both my feet and right arm - this is a condition that usually happens to people who have had a long history of high sympathetic activity and high norepinephrine levels. I can only use my right arm a little each day. My feet got so bad the the sole of my right foot split in two putting me in a wheelchair and in constant pain. I have uncontrolled hypertension to the point where it occurs where I have a hypertensive crisis least once a week - we are talking bp of at least 220/120-130. My doctors have stated that they will not treat my BP unless it is over 200/100 in that I have so much cardiac damage that this the the best I can expect. In October, for example, I spent five days in intensive coronary care with bp as high as 250/118 with no help - they released me with just as high bp. This week I missed my usual IV time by three days and had angina, very high bp, nausea, sweating and had to be evaluated for a heart attack, again just for missing an IV by a few days. All the regular stuff (gastroparesis, constipation, nausea, cold intolerance, sweating, headaches and BIG TIME Brain fog - still continue). I have actively tried to get better - a patient of Emory University in Atlanta, Mayo Clinics, Rochester and Jacksonville, Cleveland Clinic and Vanderbilt. No help yet. Stats on folks with POTS, CFS and who have developed heart failure like myself average a life span on only 59 years. This doesn't have to happen to you - YOU can be your own advocate and work hard to follow the rules and ask the right questions - and spend the right money. WE know lots more about POTS than when I got sick and it didn't even have a name - don't give up, every! Disclaimer: all cases are different. But I would like to have know at 30 that I could end up as sick as I am now - I would have taken better care. Hope this helps somebody. Elegiamore

Hi again. Let me again say thanks and "good ideas", but I can't respond further to y'all for some time. Thanks for PMs-those worried that I haven't posted, this is for you! My primary care said restrict to 5 mg of norvasc, as he wants me to be able to stand up. Ignored the ensuing hypertensive crisis Wed. night event, but today it was just horrible: WITH regular meds, two emergency Inderals and extra clonidine I was still at 205/114, shakes, etc. by 10:00 a.m. (how can this be?). I called. Cardio four called to emphasize that unless I took norvasc 10 mg TWICE a day now that I would continue to have heart attacks (hmm). And when needed, THREE norvasc a day (OMG). God know what the primary will say. He admitted that I would syncope upon standing, but that for the foreseeable future, I am to have a constant helper (right) and only get up for the bathroom, etc. I'm covered with bruises and a very large hematoma from falling, so maybe that's good. If I am not compliant, he is booting me - where have I heard that before? So this may be my last sitting up typing for awhile. Uncertain as to what my poor hubby will do, or how I will ever get a bath or shower (lol) or ever wash my hair. THANKS again and during sitting moments, I will PM those with questions/comments. Maybe hubby will check my mail. HUGS TO ALL. Elegiamore

"Doctor, I pass out when I stand up." "Then don't stand up." Couldn't resist, Firewalker. While standing for group photos in the ungodly heat at our 4th of July family reunion, my nine year old nephew overhead me telling my husband "I think I'm going to syncope." He said, "Auntie, if you are going to sink or pee, I think you better sink til the picture is finished." From the mouth of babes...

KaiXa, SO sorry to hear you are going through double disasters at once. Please let me say, loudly: You are JUSTIFIED in feeling trapped and overwhelmed. What's happened in your life is terribly unfair and frustrating indeed. It's OK and cathartic to bemoan where you are right now. I hope you feel a tad better now. Then again, that doesn't correct the inequities in your difficult situation. Are you eligible for SSI disability? A long term fix, but no help upfront. When I feel this way, I get on a chat! lol! Just escaping my reality, submerging myself in an alien lifestyle with a friend in India, or arguing with a Danish friend over Chopin interpretations lets me "run away" for a bit. And it's basically free, also. I say, some "running away" is good! When my husband went through a hissy fit where he refused to deal with my health, dumping endless physical chores on me and putting on the headphones when I complained, I called a friend conference. Four girlfriends, one of which was divorced, immediately met me at a nearby cafe. Eventually I got some helpful advice; and blew off steam. Don't give up! Never! You deserve a decent life. Keep plugging away and searching. Keep us informed. Big Hug, Elegiamore

Guys, THANK YOU SO MUCH for the support, prayers and ideas. Honestly, I feel greatly uplifted and empowered to hear your words and encouragement. BIG HUG. To EVERYBODY!!! mkoven: you are always so sharp! I have been given three MIBG tests, costing me $6000. Still, my now retired cardio just could not accept that I didn't have a pheo and marched me to the (BLANK) Clinic to consult with head pheo honcho, who again said I didn't have one. However, there is now a blood test (I found it online and got my neuro to write the guy) who says he can give a 97% accurate answer with it. FYI, everybody, if you need the info. Sue1234: Boy, are you right about the lowered quality of care in the last 10 years. Sue, I had a hypertensive crisis in 1990 (first one) and even though I was very young, I wasn't ignored; I was hospitalized for two days. In 2000, I was hospitalized for one day. In 2010, I was sent home, no treatment, by Cardio one with BP of 190/110 with no additional treatment. Cardio two sent me home with bp of 221/105 with no treatment. Maybe it would help if they read the Amer Heart Assn and Canadian Heart Assn guidelines, huh? Mack's Mom: You have really been supportive and helpful, so THANKS so much. Yes, they put me on 5 mg of Norvasc first. Then the new cardio four pointed out that the standard is 10 mg. For the next attack (which happened early that night/morning), he had me take an Inderal and nitro. It worked fairly well. But the next day I began to black out at a clinic. Later at home, I simply walked up the stairs and syncoped cold at the top of the stairs (luckily I went down forward instead of backwards down them!). Ended up in a Saturday mess but got an IV. Yet Sunday I was even worse. Called him today - and he actually spoke to ME HIMSELF(!). I told him that the 5 mg seems to trigger the syncopes, and he blew up at me. Wondering what to do...think he is wrong. FOLKS - I feel more sane after reading your posts; I am not expecting miracles, but I am expecting at least mediocre care. I'm not getting it. Elegiamore

I waited four months to see Dr. Low, but it changed my life in that I had a DIAGNOSIS FROM MAYO. My primary care said that he could care less about diagnoses from people he considered "unknowns" such as Dr. Grubbs, but that was a very crucial piece of paper in my treatment. I did have a letter from my neuro and the Cleveland Clinic sent. HOWEVER, I was willing to come to Mayo in JANUARY. MANY of my doctors have confessed that "normal" people have a time getting into the Mayo during warm weather periods because then Mayo is full of foreign millionaires that are catered to before the rest of us. Big bucks can help you avoid the frigid cold of Rochester's winters. I saw plenty of evidence while there to prove that this is true. WARNING: I got a great diagnosis, but Dr. Low told me that he would NOT treat me. So the entire trip, which costs me a fortune and made me very sick from the cold and air travel, was only good for the piece of paper he gave me. Feel free to PM me about my experiences, which really were not very good. Good luck!

Many of you have seen my previous post where I was desperate to find a POTS cardiologist in Atlanta, a city of 5.7 million people. Thank you to all of those who attempted to help me. I have gone through three cardiologists in six months. Cardiologist one said he treated POTS. He prescribed Valturna, an off the wall new med that reduces aldosterone. As I have very little aldosterone in my body and severe hypovolemia (low blood volume), I was extremely ill from his meds, including the runs. Four phone requests for an appointment failed. Cardio one (considered one of the top cardiologists in Atlanta) left a message: either I took the meds or found another cardiologist. My primary said to leave. Cardiologist two led to a hypertensive crisis with blood pressure over 230/120 with stroke-like headaches. A hospital stay of one day ran up a $11,270 bill, did nothing and released me the next day. The following morning I once again had bp over 220. Cardio two advised me that as I had passed a treatmill test, so my high bp was no biggie; he then GUARANTEED me that I would not have a heart attack. He said my heart problems were totally normal for an elderly woman. I asked him how many middle aged patients he claimed are "elderly". Then he fired me as a patient. Too bad I had two heart attacks six weeks later... Cardiologist three was suggested by my wonderful buddies here. He was, at least on paper, the best cardiologist in a group boasting 68 cardiologists at the highest rated heart hospital, Piedmont Hospital. Already on beta blockers and .5 mg of clonidine (patch and oral) a day, he added methydopa. I immediately began experiencing spontaneous jerking/dystonia symptoms and stopped it. Then he put me on aldactone, which again lowers aldosterone and vasopressin (salt retention). Again four phone calls complaining that treatment that reduces my limited blood volume and salt retention was completely insane, as I had already almost died of hyponatremia in 2003, fell on deaf ears. In three days I could not even sit up. I was too weak to hold a glass to water. My bp was still outrageously high. I called again, begging for an appointment, but was just told to DOUBLE THE ALDACTONE DOSE. Chest pain, sweating and general adrenaline surge symptoms escalated. My primary called himself to demand I be seen. No dice. The following day, Friday, I made EIGHT phone calls to my primary and Cardio three, as I had very high blood pressure and SEVERE pain in my right arm. NOBODY including the primary would work me in, let me see another physician or even make a suggestion to help me. The following Saturday morning (two weeks ago) I had a heart attack. The ER said I had also had a silent heart attack on Friday while making these calls. A heart cath revealed that I had only minimal plaque, no blockages and no blood clots. I was diagnosed with MI due to coronary artery spasms closing a main artery; a condition called Prinzmetal Angina. This condition, usually seen in women (I'm a girl) is caused by a high sympathetic state, overdoses of beta blockers (thank you, Cardio three) and AUTONOMIC DYSFUNCTION = POTS. My left ventricular diastolic function is now "very severely damaged." Can't breathe. Cardio three's partner never wrote up any of my problems in the hospital, such as syncopes when standing and my constant vomiting up all food or water for three days (I have lost 11 pounds in 10 days) or the bp swings. So Blue Cross Blue Shield notified me that it was "medically unnecessary" for me to be hospitalized all three days and they were NOT going to pay for one day - $9,000. Wonderful. I have had three more horrible angina attacks since the MIs. Trips to the ER end up with stabilization and release, just to return with the same issues the next day. Cardio three then fired me as a patient, stating that he had no ideas of what to do. Cardio three sent me to his mentor, Cardio four, head of cardio at another Hotlanta hospital. He then added a SECOND beta blocker, ignoring my articles stating that beta blockers are contraindicated for coronary spasms and added Norvasc. He did NOT offer me a follow-up appointment. I get it. I threw the aldactone in the trash. The coronary spasms immediately quit! I had two syncopes yesterday. A nice guy covering for my not-so-nice primary spent the day today (Sat.) giving me IVs and trying get my heart rate down. My neuro and primary contacted Vanderbilt, as y'all suggested. Vandy said that two MIs would not lead to me being worked in. The nurse told me that people in rented RVs, camping out in the Vandy parking lot for weeks, begging at their doorsteps each day for help, are turned away. She said she would see me in March, 2011. Sure. I most definitely can't fly anywhere. I have already been kissed off by Mayo Jacksonville in '04. Last trip to Cleveland Clinic, for NINE WEEKS and a zillion dollars, was useless. Primary says that somebody like Dr. Grubbs, not at a major medical center, has "no credibility with my local cardios" and is a waste of his and my time. MAJOR THANK YOU to our chat bud, firewalker, for going beyond the call of duty to try to help me. Perhaps Shakespeare had it wrong. First, kill the physicians, not the lawyers. HELP!!! Any ideas? Thanks, everybody. Elegiamore

POTS buddies, do NOT ignore the pain. My foot pain has been so excruciating that I finally could not put my right foot down to walk without screaming. I could no longer drive because of the unbelievable pain taking place when I pressed my foot to the pedals, as well as muscle pain in my thigh. But all of my physicians totally ignored my pleas for help, just telling me to buy expensive athletic shoes and steering me towards expensive orthodontics. The end result? The fascia, muscle/tendon that stretches from the ball of your foot to your heel, was so inflammed that it SPLIT IN TWO. FINALLY I got some attention but it was too late. I was in a heavy cast that I was too weak to lift to walk, so I was totally immobile/in a wheelchair for many weeks. Now I have spent over $1000 in three months for foot therapy twice a week to the tune of $65/visit. If I stop going, the pain returns. It is INFLAMMATION, NOT fibromyalgia nor in my head. It is ruining my life. I might add that constant, severe pain shot my bp through the roof over and over again. Then POTS symptoms got so out of control that my vasoconstriction lead to TWO HEART ATTACKS in two days. Heart caths showed that I had no blockages or blood clots and very minimal plaque buildup. Diagnosis: arterial spastic vasoconstriction closed my coronary arteries, caused by autonomic dysfunction, i.e. POTS. Enough said.

Please excuse my ignorance, but my brain is chocked full of POTS and CFS/ME info, so I'm out of it on blood sugar. BUT...I am having terrible morning/wake up during the night, NE rushes, very high bp and anxiety similar to a previous post. Would this be from eating before bed or NOT eating before bed? In the last two months (unable to walk downstairs to the kitchen and depend on my hubbie to feed me), I often don't see any food from him until 11 a.m. or later. I have gained 70 pounds in two years and I am CONSTANTLY STARVING. Correction: I am not very hungry at all UNTIL I eat. Then, within 15-20 minutes, I am starving and have to keep eating. This just keeps going on and on. My diet varies from excellent, low-glycemic, to junk food, depending on if I can fix myself and my hubbies meals or I have to eat the crap he serves from the fast food places when he is "making a meal for me." Isn't this low blood sugar? I have asked my PCP a million times about this, as I have noted that my fasting blood sugar has risen 10 points in the last two years. He refuses to give me any further testing. Or address the severe hunger. My last glucose tolerance test was in 1983 before I knew that I had POTS. I had major physical reactions but a normal test (probably was from the NE). Again, please note that I weighted exactly the same amount for eight years until this started. So stress doesn't seem to be an answer for the weight gain, as my health and personal stress is about the same or some better. Any other ideas why I am constantly hungry with POTS and CFS/ME? Thanks, Elegiamore

Well, thanks for the thread as it may explain my problems also. I was in a wheelchair and unable to drive myself around for most of May and June. I only got in an a/ced car with my ride to doctors and infusion clinic and was let off at the doors. Then, once I could walk again, I just drove myself around doing errands and getting my physical therapy twice a week for my foot (severe inflammation caused a tendon to burst in two) and getting an IV each week. By the weekend, my BP was up 90 points with minor heart rate increases. I even went and got an extra IV on Monday, but I'm just no better at all and unable to get my bp down. I live in Hotlanta - no exaggeration - and the "feel like" temp with our huge humidity was between 105 and 120 today, with a high of 98 degrees. This has been going on here since May. We are talking temps over 95 degrees for 19 days in a row, for instance. Y'all think this could cause bp over 200/110? Thanks - more thoughts, please. Elegiamore

Thanks again, everybody. Overlooked the note on dibenzyline causing pooling, so THANKS for that info. Started the methyldopa today. My bp dropped to 160/100 but I immediately fell asleep. Woke up three hours later and my BP is now 187/99 sitting, so not any help at all SO FAR. Takes a week to see full effects supposedly. Fire, the comment on the IV is a crucial observation. The hospital refused to give me an IV until Tuesday. They did such a sorry job of getting a vein that the IV needle was in the crux of my arm and it took seven hours (!) for me to get 500 ml. Not enough. Thursday a.m. I had 700 ml IV in the morning. Seems to be gone already (it is Saturday morning). Now I have burning, nerve-damage-ish pain in my right arm and shoulder, like a shingles infection that didn't break out. I can only use my right arm and shoulder for about 10 minutes without having to stop from the severe pain. Have NO IDEA how this is connected unless it is a shingles breakout precipitated by high bp. Significant chest pain, but the cardiologist of last record (lol) said that as I passed a treadmill test, the pain is not cardiac, even with bp over 200. Say what? Good weekend to all and thanks again - arm giving out. Elegiamore

Thanks for the comments, y'all. Ram, I don't think I have ever heard of the term "postural anxiety" and I've been around! I can guess that is is panic related to changing positions? In the beginning before I found clonidine and a good beta blocker, I did have panic type attacks, but not anymore. I am desperate to get somebody to prescribe dibenzyline again but that cardiologist has retired. Unfortunately, my bp of 220/110 has finally gotten to me; blood vessels are bursting all over my body, violent headaches and I finally went to the ER, was checked into St. Joseph in Atlanta (I have the same problem as firewalker - can't find a cardiologist) and it was a dismal failure. They sent me home last night after starting me on bystolic 10 mg and by this morning, I had BP of 214/100 again. Great. I think I need to get a week or more of bystolic in me to see if it works, but already I have a weird thing: Sitting my bp is 165/78 but when I stand up, it went to 135/100. WHAT? Normally they drop in unison. And I feel very close to syncope when standing or changing positions on this drug. However, they have also given me a TON of ativan to "calm me down" also. Love your thoughts on all of this. Elegiamore

Thanks so much for the responses. TX, I ALSO have small heart syndrome. My theory (and also one of my doctor's): I am so dehydrated/hypovolemic that my heart is also dehydrated and therefore appears smaller. This would jive with my mitral valve problem, which is very interesting to me. Sometimes I have a mitral valve prolapse that is leaking, but sometimes I DON'T. Same with the accompanying murmur. Most likely it shrivels up when dehydrated and goes back to normal when I'm not. Ram, your responses are very valuable and insightful. But my own personal assessment is quite simple: 1. Dibenzyline, which is an NE blocker and prescribed for pheochromocytomas (adrenal tumors which release comparable NE to my own body when standing/tilted), has worked in the past. Here is the difference in possible side effects: Side Effects of Dibenzyline: The following adverse reactions have been observed, but there are insufficient data to support an estimate of their frequency. Autonomic Nervous System*: Postural hypotension, tachycardia, inhibition of ejaculation, nasal congestion, miosis. Side Effects of Methydopa: Sedation, usually transient, may occur during the initial period of therapy or whenever the dose is increased. Headache, asthenia, or weakness may be noted as early and transient symptoms. However, significant adverse effects due to ALDOMET (methlydopa) have been infrequent and this agent usually is well tolerated. The following adverse reactions have been reported and, within each category, are listed in order of decreasing severity. Cardiovascular: Aggravation of angina pectoris, congestive heart failure, prolonged carotid sinus hypersensitivity, orthostatic hypotension (decrease daily dosage), edema or weight gain, bradycardia. Digestive: Pancreatitis, colitis, vomiting, diarrhea, sialadenitis, sore or "black" tongue, nausea, constipation, distension, flatus, dryness of mouth. Endocrine: Hyperprolactinemia. Hematologic: Bone marrow depression, leukopenia, granulocytopenia, thrombocytopenia, hemolytic anemia; positive tests for antinuclear antibody, LE cells, and rheumatoid factor, positive Coombs test. Hepatic: Liver disorders including hepatitis, jaundice, abnormal liver function tests (see WARNINGS). Hypersensitivity: Myocarditis, pericarditis, vasculitis, lupus-like syndrome, drug-related fever, eosinophilia. Nervous System/Psychiatric: Parkinsonism, Bell's palsy, decreased mental acuity, involuntary choreoathetotic movements, symptoms of cerebrovascular insufficiency, psychic disturbances including nightmares and reversible mild psychoses or depression, headache, sedation, asthenia or weakness, dizziness, lightheadedness, paresthesias. Metabolic: Rise in BUN. Musculoskeletal: Arthralgia, with or without joint swelling; myalgia. Respiratory: Nasal stuffiness. Skin: Toxic epidermal necrolysis, rash. Urogenital: Amenorrhea, breast enlargement, gynecomastia, lactation, impotence, decreased libido. ------------------ Which one would you try first? Considering that I seldom take a med that doesn't have a side effect for me, I vote for the safest one first and the methyldopa last. Meanwhile, I am waking up after a few hours with chest pain, trouble breathing and high bp. I feel terrible. And I am getting very, very tired of trying to moving forward, listening to doctors with horrific, callus bedside manners and no apparent concern for my well-being. The newest doctor said he was requesting a renal study, but has not even called to set it up. My new CFS doctor will not call me back. My primary refused to get involved yesterday and had me call an associate cardiologist, who when heard what my condition was, suddenly didn't have any openings until September. Sure. My neurologist seems to be the only sane one and wants me to go to Vandy, but they cannot see me until October or November. Firewalker thinks I should have him send a SOS letter to Vandy for me, but Vandy was EXTREMELY adamant that no rush patients are ever seen. Even if you get admitted to the Vandy Hospital. Thanks again! Elegiamore

Oops - I meant to say I have been on dibenzyline in the past. Sorry.

Dear Buds, Presently I am sitting here with bp of 210/110. My norepinephrine on a tilt is over 5000 mg, so I have a particular problem with NE. I am already on Kerlone (B1 and B2 beta blocker) maxed out at 20 mg and catapres .2mg patch and .1 oral twice a day (any more clonidine and I fall asleep sitting up). Went to a new cardiologist today about my POTS and very high BP. I told him that I had been on dimethylene, compounded down into a lower dose, and have great success for awhile, but instead of going with what I know worked for me, he suggested methyldopa, 250 mg twice a day. I have seen Ram's thread about Vandy doing methydopa trials and apparently they have not started yet and are still taking new people. But I would like to get y'all's input on going this route. I it is part of a trial, that tells me that it is not a standard treatment...or maybe even a safe treatment. I was particularly concerned that the doctor did not request I get liver testing prior to and while taking this med, as the FDA says "It is important to recognize that a positive Coombs test, hemolytic anemia, and liver disorders may occur with Methyldopa therapy. Before treatment is started, it is desirable to do a blood count (hematocrit, hemoglobin, or red cell count) for a baseline or to establish whether there is anemia. Periodic blood counts should be done during therapy to detect hemolytic anemia." And, of course, my last physical showed enlarged red blood cells, which is a minor kind of anemia. When I asked my primary care about this, he said "not important in somebody like you." Note that I am already short 20% of my red blood cells per the Cleveland Clinic. Wondering if the doctor even read my test results. Also I have posted about having CHF and it looks like methydopa can cause edema, so I'm further not so thrilled with this. And he says it will take a week to lower my BP. Any thoughts would be appreciated.

Actually there IS a difference between CFS and M.E., depending on the sources. In my case, I believe ave M.E. for several reasons: I have large entervirus loads (coxsackie), I can tell you the day this happened to me (7/82), and cardiac symptoms are the main issue with me. And I have documented brain stem neuropathy by Mayo Clinic. http://www.hfme.org/memedicalfacts.htm Also google Dr. Bryan Hyde in Canada, who has a great book out on this. Next look at the work of Dr. Paul Cheney, one of the original "discovers" of CFS/ME during an apparent epidemic in Nevada in the 80's - he wrote the bible on POTS and left ventricular diastolic failure being the key to CFS/ME. Too bad he wants $8000 cash for one visit and doesn't take insurance, or I would be on his doorstep tomorrow. Here is my first summary letter from Dr. Klimas to attempt to get me IVs from my cardio: Ms More has a complex problem underlying her chronic fatiguing condition. Clearly the most pressing is her autonomic dysfunction. Previously she had an evaluation by an excellent autonomies expert, who used a tilt challenge under various therapeutic modalities to discover that clonidine, which stimulates alpha2-adrenergic receptors mediated her autonomic dysfunction better than other standard treatments. That was more than a decade ago, and since that time her neurally mediated hypotension and autonomic dysfunction has transitioned into periods of extreme hypertension. In my clinic I was able to monitor her BP while infusing 500 cc saline, thinking the volume contracted state seen in CFSjME and documented in this patient previously might be inducing vasospasm and reactive hypertension. She has had episodes thought to be congestive heart failure as well, so this was done with extreme caution. Still the results were gratifying. Her high blood pressure came down with this infusion underscoring the role of volume contraction in her hypertension. Our studies also documented poor antiviral cell function, T cell activation and antibody titers to EBV and HHV 6 suggesting viral reactivation. Coxsackie A and B virus titers are also elevated, Dr Chia notes this occurs in his biopsy proven GI reactivation patients. I prescribed Immunovir, a protein supplement, isoprinosine, known to enhance NK cell function. Because her pro-inflammatory cytokines are elevated, TNF inhibitors are another option, but Immunovir is cost effective and less toxic, so I suggested this first. She tolerated her first week of Immunovir well, but on her second week she developed increasing dysautonomia, fatigue, increasing htn and eventually a distorted out of focus vision. She lowered to immunovir to once a day but the symptoms persisted, though the visual disturbance did resolve. She saw her cardiologist who felt she might be volume overloaded (NO-HE NEVER SAID THAT!) and started an ARB, though her BP has remained high. I also think that cautious use of IV saline in small boluses (e.g. 500 cc) might be useful to prevent volume contraction induced htn, though I do not have her most recent echo and don't know if there is evidence of volume overload at the present time. (NO OVERLOAD!) If she has not had a renal artery ultrasound it would be indicated, given the very high readings and fairly sudden onset of the hypertension. In the future we will address her non restorative sleep pattern, avoiding medications that would enhance norepinephrine (e.g. daytime stimulants) as her dysautonomia would be negatively impacted. Nancy K1masMD Medical Director, Chronic Fatigue Center Second letter is on the inflammation/immune issues... Ms More is followed by this clinic for a complex disorder characterized by inflammation and pain. She came to our center to evaluate the role of her immune system in her health problems. We did a number of lab studies that look at immune function, immune activation,inflammatory cytokines, and secondary viral reactivation. We documented poor antiviral cell function, marked chronic T cell activation and antibody titers to EBV and HHV 6 suggesting viral reactivation. Coxsackie A and B virus titers are also elevated. This sort of immune dysfunction can be secondary to something driving the ?on? signaling of the immune system ? infection and autoimmunity being the most common. When infection is a cause, it has to be the sort of infection that can persist for years, and some few viruses (HIV, hep C, or B, reactivated EBV, enteroviruses such as coxsackie) are the most common. There are rare cases of lyme that can persist, and a few mycobacteria infections that can do this, though usually in more immunocompromised states. Autoimmune causes include seronegative rheumatoid arthritis. One of the more striking elevations was the TNF-a receptor levels, which reflect a chronic elevation of the pro-inflammatory cytokine TNF. TNFa is a primary mediator of inflammation in inflammatory rheumatic conditions, but it can also seen in response to chronic infection. SO the dilemma in this patient is to sort out infection vs. autoimmunity or a mixed picture of some sort. She was started on supplement, immunovir (Isoprinosine) that boosts NK cell function, which should in turn improve antiviral function, without risking kicking up an ongoing autoimmune response. Because her pro-inflammatory cytokines are elevated, TNF inhibitors are another option. There are some that are less effective but have low toxicity e.g. high dose omega 3, though the most focused treatment would be a drug like Embrel. Ideally a rheumatologist would manage this sort of treatment, as the dose adjustments early in therapy require monitoring and local management. ------------- Yes, I have been on NSAIDS (when they don't make me throw up) and they have helped some. The way I know I have inflammation is PAIN, PAIN, PAIN. I have stopped washing my hair more than three times as week, or my right arms hurts so badly that I cannot even turn a door knob. I have such severe pain in my feet that I sometimes cry in public when attempting to walk. Klimas says, however, that the pain meds just INCREASE NE and to attempt not to take them. Easy for her to say... Reen, you see she mentions Embrel, but now she is gunshy because of my outrageous sickness from the Imunivor. She is downplaying how sick she made me, and I have not recovered after four weeks off of the drug. Ram - TNF alpha is a potent vasoconstrictor. Whoa. Does this make sense or what? Ram, I personally have no doubt that CFS = POTS and those without POTS have been misdiagnosed, but I don't DARE tell my cardiologist that I have CFS or ME, as that information is what has led to my poor treatment. Including a cardio that fired me when he heard (he said he didn't treat mental patients - disgusting in itself) and one that laughed his head off in my face and asked me to leave his office. My neurologist smiled and said "what is CFS?" sarcastically when I met him. I then said, "OK, then, I have POTS" which turned our relationship around. I have a sense of hope now, as Firewalker (God bless her) has helped me find a cardiologist in Atlanta that recognizes the combo of CFS/ME and severe cardiac impairment. Hope this is of help to some of you. THANK YOU For the wonderful responses to my recent plea of help and the unbelievable kindness from almost strangers I have received. Elegia

Great post, Fire. Thanks! I have been diagnosed with CFS/ME and POTS. I have low sed rates so nobody thinks I have an inflammation problem, except for the obvious symptoms, which include constant, severe herpes infections and lots of pain. I also have very high homocystine levels, which are signs of inflammation and now considered major heart attack factors. Recently I went to the U of Miami to see Dr. Nancy Klimas, CFS/ME expert and immunologist. I found out that I have defective natural killer cells that are not fighting viruses. As the bad killer cells do not general white cells when they should, it then appears I have no inflammation. Her advanced, expensive tests found 14 times the normal inflammatory response to viral assaults and extremely high TNF readings - all showing massive inflammation. Dr. Klimas says she has much proof that the inflammation affects the HPA axis in your brain, which regulates hormones such as aldosterone, which causes you to RETAIN WATER. No aldosterone = low blood volume = sympathetic pickup. More sympathetic response lowers your natural killer cell function and the cycle escalates. She also claims that pain meds for inflammatory pain increase NE, further screwing with this cycle. So in my case, ME/CFS and POTS are one and the same...an immune dysfunction that manifests itself as POTS. WARNING: I attempted to reduce my viral load with medication - antivirals did nothing, so Dr. Klimas put me on immune modulators (AIDS type stuff). WHAM - the worst flair up imaginable (see my emergency posts last week) with massive adrenaline releases and the other usual stuff. Apparently it worked, but my body blew a fuse. Go figure. In closing, let me state again that approximately 50-70% of ALL ME and CFS patients have some form of POTS (per the national experts). We may wonder what the opposite stats are: how many POTS suffers really have CFS/ME? And would GREATLY improve their POTS with ME treatment? I am willing to share my med records and written explanation from Dr. Klimas if interested - PM me.