Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 In a message dated 10/15/99 8:26:58 PM Eastern Daylight Time, dodd@... writes: > Does anyone have any knowledge or similarities to this?? I haven't Shari...... But I know reading about adrenalin and us do not mix I thought, This might be a good time to ask or show your Drs the sticky blood info. Hemex hypercoagulation... I have a lazy valve or something can't remember but I do know in our group there has been alot of heart flutters, palps etc... Some call it anxiety but that is what my body is feeling I am not.... I have tightness but lately have been breathing better, like a band across the chest and bones are very sore at times, I was dxd with Condrontitis sp? besides cfs/me/fm/myco I had tried sub linqual nitro and did like it but headaches were a bad side effect after awhile... Maybe you also have what they call low blood volume, too bad you have to lie down would be curious with all the technolgy you had it you were standing etc. I am certainly happy for you that it wasn't a heart blockage .......and you have the oxygen back.... It may have nothing to do with fms/cfs but we all know that high stress throws our bodies and high or even normal physical activity will floor us later... How many times have we all heard from Drs well this shouldn't be or this is rare etc etc.... Good Luck & Glad to see you back Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 Dear Shari, I have had FMS for years but never experienced what you describe. I HAVE had a different sort of feeling with my heart though, a sort of unpleasant fluttery feeling as though a one-way valve was suddenly now flapping back and forth in both directions rather than only going the way it should. I can usually make it go away by holding my breath and kind of clenching muscles in the area of the heart. Must be some kind of biofeedback I discovered unknowingly. My father who also has FMS has also reported this type of feeling. Good luck figuring this out! Hugs, Theresa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 My son (who I suspect has FM)and I get this pain in the middle of our chest. When it first started for me, I thought I was having a heart attack. The pain feels like a spike going through my chest to my back right below my shoulder blades and feels like it's difficult to breathe. The pain will last a good 10 minutes or so and happens a number of times during the day. And then it will stop and I won't have another episode for months. Zazzue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 At 08:16 PM 10/15/99 -0400, you wrote: > Hi, He injected nitro into the artery and within 15 seconds the >artery had dilated " " Does anyone have any knowledge or >similarities This does not cause a heart clenching pain to >me.......tight pressure like MANY spots on my body!! Laying flat for >the following 7 hours was hell. I look forward to hearing from you asap. > I had several of these today while laying and watching tv?????? Hi, I had a heart cath in 95, but there was no CAD. What does your cardio propose to do now? And I still wonder if this was problem all along, especially considering that women do not have same signs as men nor are we taken as seriously! I'm glad you had this done, however. The proceedure itself can cause symptoms also - did your cardio tell you this? Still, you do need to have this cardio situation taken care of ASAP! Take care, CHristie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 1999 Report Share Posted October 16, 1999 In a message dated 10/15/99 11:24:07 PM Eastern Daylight Time, Zazzue@... writes: << When it first started for me, I thought I was having a heart attack. The pain feels like a spike going through my chest to my back right below my shoulder blades and feels like it's difficult to breathe. The pain will last a good 10 minutes or so and happens a number of times during the day. >> This seems to be exactly what Berg describes when hypercoaguability is the problem in FMS. The fibrin has built up around the muscle (and what is the heart but a muscle) that creates the pain. But it's not a heart attack. The first FMS patients to go on his threrapy continue to do very well on just a maintainance dose. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 1999 Report Share Posted October 16, 1999 In a message dated 10/16/99 5:01:02 PM Eastern Daylight Time, tab@... writes: > Are you going to say anything to him?? Shari & Christie....... Sounds hard but we have to educate our Drs, these guys have gone to school for a long time, and at least Shari has a Dr that says wow never saw this before.. Your Cue Shari to try to open up the conversation and give him papers, conversation,questions ? All by not getting stressed yourself, and a head to head.... Ask , could this happen for any other reason than my stress, is the body reacting to something etc etc. Some do have alot of knowledge and just might work.... Just like what happened with the pych tests and I, certain Drs ignored that info and pieced what else they had with my med papers and looked at me the patient in front of them. What else could be causing this or that.... Good Luck....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 1999 Report Share Posted October 16, 1999 > >Dr. told my family I was having these from excess adrenaline produced by my being a high stressed individual. Do I need to tell you how angry this makes me??? At 4:19 A.M. I woke up with one. Felt like a corkscrew turned under outer corner of left breast (like 45 degree angle), tightness and pressure, but not " oh I'm going to pass out " pain. I took nitro and went away. Now was I stressed!!?? I don't think so at 4:19 A.M.. > Dear Shari, Will docs EVER learn??? Are you going to say sanything to him?? I am glad the meds are working, however. Doctors! Christie At 10:10 AM 10/16/99 -0400, you wrote: > Good morning, Let me update you and answer pertinent questions. >The name of condition is Treatment is beta-blockers and nitro to >open arteries. My dr is treating me with 2.5 mg Norvasc - a beta blocker >and nitro. Dr. told my family I was having these from excess adrenaline > " " I don't think so at 4:19 A.M.. All rx's checked and they are not >interfering Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Their site is hemex.com (http etc.) and you just click in CFS/FMS. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 (SNIP) >This seems to be exactly what Berg describes when hypercoaguability is >the problem in FMS. The fibrin has built up around the muscle (and what is >the heart but a muscle) that creates the pain. But it's not a heart attack. >The first FMS patients to go on his threrapy continue to do very well on just >a maintainance dose. >Gail Hi, Is there a site for this treatment? I would like to know more about the fibrin build up. I had been on aspirin as a blood thinner, but now cannot take aspirin or any blood thinner due to GI bleed this summer. Is aspirin also used for hypercoaguablility? Hanging in with Vit. E, Christie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 Connie............I have posted before and my symptoms of RS started when I was 10 years old. I have had one MI and went to the ER about a month ago with some changes in EKG. I will go back to cardiologist Sept 18. I do think it is all related. My muscles spasm causing a shortage of blood and I have mitral valve prolapse. I take verapamil daily and have for several years. I am 55; had three arteriorgrams and nothing else can be found. They may do a physiological study this round. Good luck. There never seems to be an end to what this secondard infection or inflammation can do to our bodies. Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 Hi Connie, I have had a heart problem for years, long before I was diagnosed with this spondy. (Prob AS) I have a conduction problem, so that occasionally my heart goes out of its proper rhythm fand has to be shocked back in. This occurs when I vomit, sometimes when I sneeze and occasionally, lately, when I bend down. Its a real nuisance and results in a trip to hospital (intensive care unit here) to be put right. I also have some fluid around the lining of the heart, due to the inflammatory arthritis, so my cardiologist says. Cheers, Tasmania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 I want to thank you (/Jane) for answering my request for info on your heart problems relating to AS. I will be seeing someone here in NC...just for consult. That way, I'll get two opinions, one here and one in Fl. If any invasive procedures are needed, we'll go to Tampa area where I have more confidence in the medical profession and facilities. Here in NC, I had the stress test done, minus a cardiologist at hand, just 2 techs. (which didn't sit well with my husband). The tech that injected the drug, jabbed me three times before getting a vein (just luck) digging around each time causing my whole hand to bruise and pain for a few days. (Using the same needle two of the times, I might add!) In the past, I've had many trouble sticks...but this was most ridiculous. The same person proceeded to tell me she loved her *new* job...as you never know what will happen when someone takes this test!!! Talk about trying to calm the patients fears....that's really what someone needs to hear. Good bedside manner. NOT. I just felt that if this is the way the cardiologists run their business, I don't want to be their patient. There were some other things that happened...I won't elaborate on. In the mean time, I'm loving all the sweet attention my hubby is giving me...how long and far do you think I can carry this? :-) Best regards, Connie (granny) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Hi Connie Things haven't changed much in N.C., have they? About 25 some years ago, my husband and I were visiting my sister in lin. she got very sick and said she thought it might be her heart. She had a history, so we piled her in the car and went to another town just north(she refused to go to the hospital in lin because they just sorta killed her husband-another story). The doctor didn't want to believe her. He took my husband aside(being the man and all) and said that she thought she was having a heart attack, but of course she was too young! My husband said: Well, why not, her husband died at age 30. so, he tried to tell DH that that was out of the ordinary. So, my husband pulled out his bottle of nitro and said: mine was age 32. The point being is that things were and I guess still are so slow that people just didn't do the " heart thing " . When her husband wasn't feeling well, they took him to the local hospital and they told him nothing was wrong and sent him home. within one hour he was dead! So, I'd say go to Florida! As for your husband, go Granny go! Peggy Grannyof9@... wrote:Here in NC, I had the stress test done, minus a cardiologist at hand, just 2 techs. (which didn't sit well with my husband). Peggy (mhksmom) Today is the first day of the rest of my life........ --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 I am one of the ones that has posted message regarding heart complications due to AS. They are 1) heart block, to varying degrees, which is damage to the electrical conduction system of the heart (the natural pacemaker) that keeps the chambers beating synchronously. This can be asymptomatic and if so, is usually found during a routine EKG. If there are symptoms, they will consist of an irregular heartbeat, feeling faint, fatigue especially with exercise, shortness of breath, etc. If you have any of these symptoms or any others associated with heart block, you should see your doctor or preferably a cardiologist. My boyfriend recently had a pacemaker implanted because his heart block was causing a slow and erratic heartbeat. It had progressed to second degree, and even though second degree heart block doesn't always require a pacemaker, his heart rate was so slow that there was danger of fainting any time. The second complication is aortic insufficiency, where the aortic valve becomes damaged. This causes blood to flow back from the aorta into the left ventricle. This too can be asymptomatic or cause such symptoms as shortness of breath, fatigue, etc. My boyfriend has this also. It is diagnosed using an echocardiogram, where the heart chambers and valves are visualized using an ultrasound machine. Both tests are totally painless and worth getting if you have any concerns. These are the only ones I know about and have not heard anything about ischemia in the coronary arteries. I hope this helps and that you get the medical attention that you need to address these problems, if they exist. Take care and be well. Lana At 05:41 PM 9/2/02 -0400, you wrote: >I believe a couple of you have the heart problems associated with AS. Could >you tell me what they were and your symptoms and what they did for it? ....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 For me, the heart problems began before I was diagnosed with AS, etc. It started out as Atrial Fibrilation and now also inclused Ventricular Tachycardia. I take 0.375 mgm of Lanoxin daily to keep the old ticker in line. Any dose less than that and the problem comes back. +Dave --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.384 / Virus Database: 216 - Release Date: 21/08/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Hi Priscilla You are in our prayers for your test and follow up. I would not be too mad at your doctor for not telling you for a year. It could have been an inconclusive echocardiogram and she was waiting for more symptoms to present themselves. Doctors do that in this litigious society we have today. They have to balance the good they do by not telling if something is really iffy with the harm they could do by telling you and treating you when you didn't need it. +Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Just got this Priscilla, but will be praying for you. I was diagnosed with Lupus prior to RS and FMF, so if you want some of the books I have, let me know and I can drop them off on my next trip down. Hugs, Susie Heart Problems Today is a big day for me as I go for my echocardiogram at 3:00pm to see if in fact I actually do have " Pulmonary Hypertension " (PH) which is high blood pressure between the heart and lungs. This condition is life threatening and lowers life expectancy to 3-5 years or 10-15 years depending on which literature your read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Great word! New one for my vocabulary. Thanks Dave! Jackie _____ litigious +Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 How much potassium are you using? I had to get my diet up to about 3g a day when I was having heart issues. Calcium is very important too. -LanaOn 9/3/06, sharflin <sharflin@...> wrote: I've been having heart sensations for a few weeks, and yesterday they got worse. I can feel my heart beating and my resting pulse is up from low 70s to high 80s. Yesterday after I exercised I felt very weak, like my blood sugar was low. I'm not sure what is going on, maybe those are hyper sympoms? I've been off my small dose of synthroid for several months after starting iodine, and haven't had any bloodwork done. I've tried magnesium, sea salt, and potassium, and none had any impact. Any ideas would be appreciated. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 Not 3 grams, I'm sure. Is there a particular brand/type of potassium you recommend? I was thinking about calcium also but the last time I tried it months ago, my stomach was upset. I can get some bottled water high in calcium - do you have any suggestions for how much to try? Thanks much for your reply Lana, Sharon > How much potassium are you using? I had to get my diet up to about 3g a day > when I was having heart issues. Calcium is very important too. > > -Lana > > On 9/3/06, sharflin <sharflin@...> wrote: > > > > I've been having heart sensations for a few weeks, and yesterday they > > got worse. I can feel my heart beating and my resting pulse is up from > > low 70s to high 80s. Yesterday after I exercised I felt very weak, > > like my blood sugar was low. I'm not sure what is going on, maybe > > those are hyper sympoms? I've been off my small dose of synthroid for > > several months after starting iodine, and haven't had any bloodwork > > done. I've tried magnesium, sea salt, and potassium, and none had any > > impact. Any ideas would be appreciated. Sharon > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 s low sodium tomato juice has 925 mg of potassium per 8 ounce glass. Potassium supplements are limited by law to 99 mg. So you must take approximately 33 pills to get the RDA of potassium....best to get the tomato juice. IF you already take a multi and eat dairy, i personally would not start messing with calcium...everything is calcium fortified these days. Either way try potassium first. I would get some thyroid blood work done and see if you indeed do not need thyroid hormone. --- sharflin <sharflin@...> wrote: > Not 3 grams, I'm sure. Is there a particular brand/type of potassium > you recommend? I was thinking about calcium also but the last time I > tried it months ago, my stomach was upset. I can get some bottled > water high in calcium - do you have any suggestions for how much to > try? Thanks much for your reply Lana, > Sharon > > > How much potassium are you using? I had to get my diet up to > about 3g a day > > when I was having heart issues. Calcium is very important too. > > > > -Lana > > > > On 9/3/06, sharflin <sharflin@...> wrote: > > > > > > I've been having heart sensations for a few weeks, and > yesterday they > > > got worse. I can feel my heart beating and my resting pulse is > up from > > > low 70s to high 80s. Yesterday after I exercised I felt very > weak, > > > like my blood sugar was low. I'm not sure what is going on, maybe > > > those are hyper sympoms? I've been off my small dose of > synthroid for > > > several months after starting iodine, and haven't had any > bloodwork > > > done. I've tried magnesium, sea salt, and potassium, and none > had any > > > impact. Any ideas would be appreciated. Sharon > > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 1 cup Lima Beans or 1 baked Potato have over 900mg of Potassium. Orange Juice and Bananas are also good sources, coming in just under 500mg Potassium per serving. Be careful about buying processed versions of these foods though - depending on brand there could be little to no potassium left. Baked beans with molasses (up to 900mg Potassium per Tbsp for the good organic blackstrap type) can also be a good source. Make sure you are using only natural sea salt. Using pure sodium chloride aka table salt causes you to more quickly deplete potassium. -Lana s low sodium tomato juice has 925 mg of potassium per 8 ounce glass. Potassiumsupplements are limited by law to 99 mg. So you must take approximately 33 pills to get the RDA of potassium....best to get the tomato juice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 Spinach is great calorie-wise along with beet greens...I use to throw them out! http://www.health.gov/dietaryguidelines/dga2005/document/html/appendixB.htm --- Lana Gibbons <lana.m.gibbons@...> wrote: > 1 cup Lima Beans or 1 baked Potato have over 900mg of Potassium. Orange > Juice and Bananas are also good sources, coming in just under 500mg > Potassium per serving. Be careful about buying processed versions of these > foods though - depending on brand there could be little to no potassium > left. Baked beans with molasses (up to 900mg Potassium per Tbsp for the > good organic blackstrap type) can also be a good source. > > Make sure you are using only natural sea salt. Using pure sodium chloride > aka table salt causes you to more quickly deplete potassium. > > -Lana > > s low sodium tomato juice has 925 mg of potassium per 8 ounce > > glass. Potassiumsupplements are limited by law to 99 mg. So you must take > > approximately 33 pills to get the RDA > > > > of potassium....best to get the tomato juice. > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 Sharon, What you describe could be due to a number of things, including hyperthyroidism. Synthroid clears out of your system by 8 weeks after discontinuation, so the Synthroid you were taking isn't responsible for this. If you have Hashimoto's autoimmune thyroid disease swings or autonomous thyroid nodules, taking iodine might have induced a hyperthyroid state. How much iodine are you taking? Have you taken your temperature? Hyperthyroidism would elevate the temperature above normal, as would an infection. Adrenal insufficiency could explain heart palpitations and exercise-induced weakness. I don't know that it would account for the increased pulse. I agree that testing might help you sort out what is going on. Lynn > I've been having heart sensations for a few weeks, and yesterday they > got worse. I can feel my heart beating and my resting pulse is up from > low 70s to high 80s. Yesterday after I exercised I felt very weak, > like my blood sugar was low. I'm not sure what is going on, maybe > those are hyper sympoms? I've been off my small dose of synthroid for > several months after starting iodine, and haven't had any bloodwork > done. I've tried magnesium, sea salt, and potassium, and none had any > impact. Any ideas would be appreciated. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 I would suspect that you need thyroid meds and/or adrenal support. My pulse was always very rapid until I got both. Gracia I've been having heart sensations for a few weeks, and yesterday they got worse. I can feel my heart beating and my resting pulse is up from low 70s to high 80s. Yesterday after I exercised I felt very weak, like my blood sugar was low. I'm not sure what is going on, maybe those are hyper sympoms? I've been off my small dose of synthroid for several months after starting iodine, and haven't had any bloodwork done. I've tried magnesium, sea salt, and potassium, and none had any impact. Any ideas would be appreciated. Sharon No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.405 / Virus Database: 268.11.7/436 - Release Date: 9/1/2006 No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.11.7/436 - Release Date: 9/1/2006 Quote Link to comment Share on other sites More sharing options...
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