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    Old 07-28-2017, 04:15 AM   #1
    Indesperation
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    Help me solve 8 year medical mystery

    I could really use some help here. I have been to so many doctors and hospitals in the last 8 years. I have scoured the internet. I can't find an answer to my problems. I have fought tooth and nail for my health, but lately, the fight is going out of me because doctor after doctor just shrug and send me elsewhere. It is hard to find hope when no one knows how to fix you.

    I am a thirty one year old male. I was diagnosed with high blood pressure in 2009. I was in college at the time commuting to campus and I would suddenly keep getting very dizzy on the interstate. I wouldn't be able to get a good breath, my heart would start pounding, and I'd have to pull over. For all I know now medically at this point in time, I'd have said it was anxiety, but there was no real context for anxiety, and things only got crazier from there.

    High blood pressure was the diagnosis they came up with at the time, and they slapped me with some prescriptions and sent me out the door. Unfortunately, after a couple of different medications, I began getting palpitations and low pulse. Eventually, they put me in the hospital for three days. While there, they ran a few tests. My blood pressure kept climbing and they kept giving me nitro sending it plummeting. It got very dangerously low at one point and the male nurse was scared to death. He said he thought he was going to lose me. He took the time to pray with me that night before he left his shift. All the nurses would run in everytime I got up to pee. They said my pulse would spike from a resting rate in the 70s to 140 or so just from standing up and walking to the restroom. I had a stress test and echo done, but everything seemed fine. They eventually sent me out with a 24 hour halter monitor.

    Fast forward a few months and I am constantly in and out of the hospital with chest pain and palpitations. I had my blood pressure medicine changed several times. Had more tests ran on my heart. All the focus was entirely on it, although I still struggled greatly with dizziness and breathing difficulties. I went to one heart doctor who told me I needed a pace maker. That scared me. There didn't seem to be a real basis for such an extreme thing that I could understand but he had a really thick accent that I couldn't quite follow all of the time. I ended up going to a different heart doctor who put me on a 30 day event monitor and said the other guy must've been crazy because I was fine.

    I dealt with these symptoms on a daily repeat from 2009 to 2013... dizziness while driving, difficulty breathing, constantly fatigued, waking from sleep not breathing, chest pains that came on and had all the symptoms of a heart attack, dangerously high blood pressure, ridiculously low pulse, palpitations, even some strange situations with my eyes twitching and blurring and having black spots obstruct my vision. I went to sleep so many times at night wondering if I would see the next day. I was literally too scared to function, afraid to die.

    I don't know what I did different if anything at all, but I had a healthy spell from late 2013 maybe (I can't be too sure when it stopped) all the way through February 2016. Oddly enough, some of those times there were the most stressful times of my life (lost our house in a storm while my wife was pregnant, had a law suit try to tear me down, got laid off by my company, etc.) but my health held up. I took it for granted barely even noticing as I'd just gotten used to it being such an occurrence. I wish I would've celebrated and held on to that feeling longer, because in February of last year, it came back stronger than ever before. I had what I thought was a heart attack at work. Came out of nowhere. I got really weak and dizzy, began to shake, my chest clenched up , I lost all breath, and my arms went numb. I blacked out in the floor for a couple of seconds before being rushed to the hospital. I've not had an easy day since then.

    My chest stays hurting. I've had so many doctors look at me and tests done. I can't breath well (had an 81 on a spirometry test at the ashthma doc). I wake up nightly feeling like I stopped breathing and/or having my heart jump with a feeling of electrical shock. My pulse has been very weak sometimes dropping to the mid 30's and when it gets to that, I feel I'm for sure going to die. I'm not on any beta blockers, but I am on Losartan Potassium and Amlodopine Besylate as well as a number of other things. They tried me on anxiety medicine, it never worked for me, only made things worse.

    This time, a slew of things have been found... I have Alpha One Antitrypsin Deficiency. I have ulcers in my stomach. I have low breathing function. Just found out I have sleep apnea. I have an extra rhythym in my heart on occassion and mild mitral valve prolapse. I have a complex benign cyst in my kidney. Most of all concerning to me, I have 5 times the maximum suggested amount of renin in my body. I have also been having my face get dry and red (apparently a case of Seborrheic Dermatitis). I've noticed this tends to precede the worst cases of my symptoms.

    Still, I suffer daily and no one claims to know what exactly is going on. My blood pressure continues to stay high with the Diastolic number often being in the low 100's. My pulse continues to plummet at night. My eyes will twitch and blur. My heart will skip beats. I will get dizzy driving or playing a game or watching a movie in the theater. My arms and legs will get numb and tingly at times. I belch way too often. I wake up from mid sleep with shocks and gasps. I will bear a constant pressure and pain in my chest day in and day out.

    Every doctor I have just refers me to another specialist or prescribes something new. I've been left to research this mostly on my own, because I am losing hope. Here are my theories. Snoring is a tell-tell sign of sleep apnea, yet I never snore, therefore this makes me think it may be Central Sleep Apnea caused by my brain not telling my lungs to pull in air. Seborrheic Dermatitis is also sometimes caused by diseases of the Central Nervous System. Perhaps something is going on with my nerves that are causing my body to have all kinds of issues? Could it be MS? Maybe some other CNS Disease?

    My other theory is that there has to be a reason for my renin to be at 262.5 when the maximum is supposed to be 50 at the highest. I feel that it has to do with the complex cyst they found in my kidney, but I canít get a doctor to actually agree to talk about removal. Renin is generally produced by the kidneys when blood pressure is lowÖ but mine is never low. Why is there so much Renin? Could Renin be causing my blood pressure to stay skyrocketed? Could that in turn be causing other parts of my body to not function as well?

    I need a way through this. Iím without hope, afraid, and depressed. I have been ravaged by medical debt and my marriage is full of tension and disappointment. I canít play with my daughter, canít go for a walk, canít go on a date, canít even have sex without tons of pain and hurt. My wife wants another child, but I donít know if Iíd survive any of it. This has halted my life drastically. I canít even get surprised or excited without having tons of pain follow suit. Itís like I get very flushed and dizzy and weak and then my heart and blood pressure go crazy. If anyone has any answers, any suggestions, anything at allÖ please help me. I am desperate.

     
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    Old 07-28-2017, 05:51 AM   #2
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    Re: Help me solve 8 year medical mystery

    Dear Indesperation,

    I am so sorry you have been going through all of those scary symptoms with little support and virtually no one to provide any kind of real understanding what is happening or how to deal with it! That makes for a very difficult life! But let me tell you that for a fact there is HOPE, and there are solutions! Sometimes we need someone that is outside the box to help us see what is inside the box. I think that's normal. In my own experience, doctors are trained to think a specific way and often we have to learn how to help ourselves before doctors can help, because most are taught medicine and surgery and little else. But medicine and surgery, as important as they are, at times do not in themselves create health. As you found out.

    My husband has Poly-cystic kidney disease (it is a genetic disease of cysts in the kidneys), and has suffered virtually all of your symptoms. I met him when we were in our thirties and now he is 68, his blood pressure is under control, and he is healthy. A Nephrologist orders a kidney scan periodically just to know what's going on and even with the cysts, he is fine. A doctor friend's father with polycystic kidney disease lived into his 90's and died from old age. So, all that to say, the first stop here must be from the FEAR.

    There are solutions and you can relax and be happy. and yes have another child.

    Besides cysts in his kidneys, high blood pressure and cysts in his skin, my husband grew up with a lot of depression (under depression was anxiety and insecurity)...but besides those issues he was and still is a great guy. The way you describe your family I think you also are a great guy that just wants some direction on how to get as healthy as possible. Am I right?

    Doctors are great and I use doctors, and so does my husband, but they deal mostly with symptoms, not health and prevention. And, let me be clear, I am not in the medical field and I am no expert. I just have experience and have studied cause and effect for most of my life for my own health. Doctors deal with symptom control by surgery or medication. But they are just human beings and have no power to heal. The body itself has power to heal when we give it what it needs. And yes, you can make changes that will allow your body to relax and recover, and be healthy.

    I can share some things that helped my husband overcome most of the troubling symptoms, if you like.
    __________________
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    Last edited by yayagirl; 07-28-2017 at 05:54 AM.

     
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    Old 07-28-2017, 06:17 AM   #3
    Indesperation
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    Re: Help me solve 8 year medical mystery

    YaYaGirl,

    I would vastly appreciate any insight you or anyone else can give me. I need something to cling to.

     
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    Old 07-28-2017, 07:04 AM   #4
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    Re: Help me solve 8 year medical mystery

    Have you been tested for vagus nerve dysfunction? A lot of your symptoms point to this. Good luck, Sera

     
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    Old 07-28-2017, 07:38 AM   #5
    Indesperation
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    Re: Help me solve 8 year medical mystery

    Seraph,

    No, I have not. I will definitely read up on it though. I'm going to be seeing an endocrinologist soon. Would that be something they could look it or would that side more with neurology (I'd assume)?

     
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    Old 07-28-2017, 09:25 AM   #6
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    Re: Help me solve 8 year medical mystery

    Dear Indesperation,

    It seems you have lived in great fear for quite some time. That kind of stress negatively impacts everything, especially blood pressure, which by some changes you CAN stabilize. Please slow down and take some slow deep breaths, OFTEN. You CAN get where you want to be. See if you can get your wife onboard (let her know your goal is to be healthy and feel positive about bringing another child into the world), but mainly do this for your own well-being, for your own quality of life.

    The hormone renin is a normal part of life. It maintains blood pressure when you have inadequate salt. So you do need a normal salt intake, just not an overload of salt. It is only in salt‐replete people that renin might contribute to hypertension. So it's very important that you maintain a balanced diet, ie, do not cut out salt completely and do not eat too much at once. I happen to lose salt so fast that I have to supplement. If I get weak from heat or excessive perspiration I can sprinkle a little salt on my tongue. You can tell what's happening from paying attention to your symptoms.

    My husband was very scared of polycystic kidneys (and he has many, and big ones) before he learned what he can do for himself and started doing it. Now he is never worried. There are diet and lifestyle changes that greatly deal with the symptoms you have. First let me say that removing a cyst won't solve your health issues. Messing with the kidneys is not done. Cysts only become a problem if you get so many that they crowd out all normal kidney tissue so the kidney can no longer filter the blood. You are FAR from that. Fear and lack of understanding of cause and effect so that we make wrong choices is the biggest culprit in damaging our health.

    If you make a few changes you will do just fine and you can get stabilized and live your life. First, if you can, get seen by an older (not fresh out of medical school) very experienced Nephrologist, so your symptoms can be regularly tracked by a doctor that understands what is what and won't scare you.

    A kidney cyst is rather common genetic occurrence. You can live with cysts just fine if you take care of yourself appropriately. For your health it is imperative that you learn to make your body and mind relax. Getting some idea how to live with your own personal physical weaknesses (most of us have them) will aid you more than anything else that you do, as well as there are some things you need to change. Since I don't know you, you will need to discern that for yourself of course. I have every confidence that you can overcome this and live a long life. It's not going to destroy you, IF you make a few changes.

    What medications are you on? You don't want to be taking any unnecessary meds or supplements. many times their side effects are what does damage, so read up on every drug you take. I read drug.com before I even buy a prescription as I am esp. prone to bad side effects. If you decide that you have been on something you don't need to take, wean off it slowly. Don't change anything drastically or suddenly unless you know it's safe to do so. You can always ask a pharmacist if it's safe to stop something cold turkey.

    My husband uses only one med for high blood pressure, Lisinopril 20 mg. daily. He walks 25 minutes a day five to seven times a week to lower and stabilize his blood pressure and doing that, also, will effectively help you get to and maintain a healthy weight, also very important. Now that he regularly walks, his blood pressure is always normal and his doctor is very pleased. High blood pressure contributes to cyst growth, so you do need to get that under control and yes you can.

    You need to eat a healthy diet and cut out as much salty, pre-prepared and fast food as possible. Fast food places usually have some healthy food available, so if you eat out choose those foods. I like my junk food, too. But you need to first get yourself healthy and then the body can tolerate a little junky food.

    If you need to lose weight please don't concentrate on losing weight. Concentrate on health and choose healthy activity and food and your weight and emotions will adjust themselves.

    My husband eats a basically healthy diet. He eats some junk food too, so you don't have to over do this. He stopped all alcohol. Bananas are good for potassium. Cut out excessively salty foods like processed meats and fast foods. Left over chicken and low fat meats are great for sandwiches. There are low sodium thin sliced meats like turkey and chicken at grocery stores. If you like nuts, eat the roasted unsalted nuts. Keep chips and highly salted foods to a bare minimum. Or if you can, just cut out the extremely salty foods for awhile till this gets under control.

    Also, take B100 daily available at any drug store, (NOT B complex, which is not a naturally balanced form of B) to feed your nerves, as nerves require vitamin support and we get hardly any B vitamins from food. And ALA (alpha lipoic acid) is safe and great to help the body with inflammation such as cysts. Take that until your body gets more balanced. It is harmless and very beneficial.

    Also, for cysts and skin health, buy pure coconut oil which has an anti-bacterial effect, and use that on your scalp and skin. Products made with that oil usually don't have enough in the products to do much good. Pure jojoba or almond oil also are very beneficial. Few oils have small enough molecules to enter the skin and nails, but those three oils do. They all three are safe to be taken internally and/or rubbed on the scalp and skin and they also will absorb.

    I've shared these things many times with the result that the sufferers have felt like they received a miracle. Actually it's just the effect of healthy, non-dangerous solutions.

    Let me know how you are doing.
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    Last edited by Administrator; 07-28-2017 at 06:24 PM.

     
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    Old 07-28-2017, 11:42 AM   #7
    Indesperation
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    Re: Help me solve 8 year medical mystery

    YaYa,

    Thank you so much for that lengthy follow up. I suppose, if I am being honest, I have lived in fear for quite some time. Especially here lately. I don't want to leave this world, especially not with my daughter now in my life. She is going to be 3 in November. She is my world and she cries for me when I go to work everyday. I can't imagine what leaving this world would do to her. So yes, I fear... because I am in constant pain and I can't find the hope I need in doctors who just shrug their shoulders and say they'll see me back in 6 months or in God who remains silent (though I do still attempt to keep believing He'll pull through in some way).

    I don't know how to defeat that really. I can't stand going to sleep at night and my pulse getting down into the mid 30's and feeling cold and finding difficulty in breathing. I can't stand when my chest gets so full of pressure midday where it feels like there are weights in my ribs and I feel like I'm going to pass out.

    Right now, I'm on 50MG of Losartan Potassium, 10MG of Amlodopine Besylate, and 40MG of Esomeprazole. I also take 2 puffs of a QVAR inhaler twice daily and have been using a CPAP machine since last Friday (that honestly seems to make it more difficult to breathe right now). My medicines get changed a lot, but this is the current set up.

    I eat mostly good. I don't drink any caffeinated drinks. Haven't for over a year. I get a decent amount of vegetables and some fruits. I eat lots of lean meats and low sodium deli meat when I do. We do have the occassional pizza or pasta, but anything tomato based seems to really mess me over the last few months causing very intolerable heartburn and indigestion. Your comment about salt interests me. When I found out about the high blood pressure in 2009, I stopped adding salt to anything. It doesn't mean that some of the foods I do eat aren't salty (though I do try to avoid the super salty ones), but I probably don't get a lot of salt anymore.

    I mostly drink water and 1% milk. I will occassionally drink juice or water flavor add-ins. I honestly don't drink enough water and try to make more attempts to do so, but I get kind of sick to my stomach when I force it. I will have to check and see if there are any nephrologists around. My doctor is going to send me to an endocronologist soon, so I was hoping maybe that would get me on the right track.

     
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    Old 07-28-2017, 06:07 PM   #8
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    Re: Help me solve 8 year medical mystery

    Hi sweet desperation,

    I can't help but notice that you didn't mention walking, your weight or what you do for exercise. Usually exercise is the last thing depressed people want to do, but is the most critical to get our metabolism optimally functioning. And almost everyone that can't or won't exercise is depressed...so that says a lot about how slow the metabolism gets when we don't exercise.

    I cannot go walking due to major leg injury and the resulting issues (read some of my past posts if you care to) and that really lowers my metabolism and causes a lot of muscle aching and tissue pain which gets worse the longer I age. To assist my metabolism my endo has me on two 97.5 mg natural thyroid pills a day and Vit B12 shots. My liver was compromised by Hep C I got from a transfusion that I had for 34 years until it was cured with the new drug Harvoni. My liver is OK, in spite of all of this because I avoided liver compromising substances and I learned about supporting my body with B 100 and ALA, and other health supporting ways. ...so my body still is functioning OK. I was a super active person that loved movement, dancing, jumping, running and physical work. I still love those things and I miss all of that. Just sharing that I really can understand how all of this must be affecting you. Plus there was a backlog of childhood trauma that dragged me down until I faced it head on and accepted what was my own burden and what was someone else's so I could forgive and let go of those circumstances. It was hard to face and do that work or die, literally. Are you at a similar crossroad?

    Depression saps the very strength we need for physical recovery and for loving on your child. Plus you don't want her to grow up thinking life is joyless, right? We can't fake it. Children see that. We have to overcome, and learn to daily be an over-comer. I believe in you that you came here to learn to overcome.

    One thing I realized years ago was that I needed to forgive my own body for not working perfectly, so that I could use my energy to love myself and others, and take better care of myself. Some perceive depression to be from unresolved anger. and it seems true because I had a ton to forgive of myself, others and my own body for letting me down. I started practicing forgiveness toward and about everyone and everything that bothers me, and to allow myself to be free of emotional baggage. For sure we are not in control of much else in life.

    I just want to encourage you, because there are answers out there, but until you get encouraged enough to be proactive on your own behalf I don't think you will get answers. We can ask for guidance, then we have to truly seek the answers. In my experience doctors are never the first ones to seek unless life or limb is in immediate danger.

    Don't get me wrong, I appreciate and use doctors. I just don't depend on them to find or resolve my issues. If they couldn't listen to my questions about things I learned to move on. After researching my symptoms, I am the one that first got my own blood tested for thyroid deficiency, and the one that mentioned Vit B12 to my great endo (those were with two different doctors). We need to do our own research then discuss our ideas with our doctors, and we can ask to be humored so we can try things and see how they work for us. It's no loss when we didn't yet find an answer, and is a great discovery when we do.

    We can't depend on anyone else to know what we are going through or to do the research for us because only you know what you are experiencing. We have to trust enough to believe answers are 'out there' and understand enough to turn away from the current mind set that only doctors know what we need. I love this age of the internet as I don't have to go check out tons of books and study them.

    I want you to have hope and to look up the side effects of the drugs that you are on and the benefits of the substances I mentioned so that you can ask educated questions of your doctors and make educated decisions on what to take and what to wean off of. Drugs.com lists them and so does the Mayo clinic website. The Mayo clinic website is rich with information on just about any symptom. You will know what fits your issues. The more info you have about how to take care of yourself the more confident you will be able to relax and trust that you have some issues (we all do) and you are OK.
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    Last edited by Administrator; 07-28-2017 at 06:29 PM.

     
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    Old 07-29-2017, 12:18 PM   #9
    Indesperation
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    Re: Help me solve 8 year medical mystery

    The more I go through this, the less hope I have in doctors. I had a very rough time last night and had to fight the idea of going to the hospital. My blood pressure got to 156/118. I kept getting uncontrollable eye twitching and blurring, numbness in hands and arms, and a very weird and uncomfortable burning sensation through my stomach, chest, and arms. My hands were also kind of tensing up and pulling closed on me slightly. I have had this dull pain in my head ever since. I worry I may be having a mini stroke.

     
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    Old 07-30-2017, 12:24 AM   #10
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    Re: Help me solve 8 year medical mystery

    Dear friend,

    I wish I could help you stop being afraid. If you really believe you are having a stroke call an ambulance, by all means. If you believe that don't ignore it.

    Don't take what I share wrong. I trust that you truly feel what you feel and that you fear what you fear. If you know you are just afraid and that you need to get a grip, let me say though that yes you can get a grip.

    If you keep calling or going to the doctor and they don't find anything truly life threatening, don't you have to accept that this fear of your body is caused by anxiety? I had an episode similar to what you shared where an ambulance was called and I was taken to the hospital for tests and spent the night. I felt real physical reactions. My heart was pounding and my arm and face went numb.

    But after tests and all, my heart was proven to be sound and no telling what really caused it. It really could have been an extreme digestive disturbance, then the rest was from fear of what that felt like. I can tell you I know that fear can cause real physical reactions that can scare the daylights out of us. I have all sorts of weird nerve shocks and sensations randomly all over my body at random times from that years old accident I was in. I have to live with it. No one can prove the whys or wherefores of it, or even pin an accurate label on it. But one thing I know is it proves I am alive. You are experiencing a lot of stuff, too, but doctors can't fix everything. We have a choice, to lay down and die or get up and take care of our business and family and self.

    I can also tell you that yes, for sure we are all going to die someday...and I ask you this....do you want to enjoy the time here that you do have or do you want to dwell on every sensation you have and be afraid to be alive?

    Do you really want your daughter to feel that way about herself? because what you model for her is what she will do to herself unless you get a grip and change your perspective. People do live just fine with all sorts of conditions and symptoms. I live with daily pain and all sorts of electrical shocks and numbness from the accident. I don't ignore or deny that fact, but considering the alternative, I still work and play and take care of my responsibilities and enjoy my life. You can do it too. You are not dead yet. Are you?

    You have to have hope, first, and you have to do your own research so you understand the choices you are making. Doctors are trying different things to help you feel better. But they can't control your thoughts or reactions. You have to do that part.

    It's your job to take care of your mental and physical health. Drugs often cause physical reactions, depending on the person. You must learn what you are taking...by the way do not stop any drug cold-turkey AT ALL. I'm not prescribing for you or telling you what to take. I'm just saying you need to understand the choices you are making and how they may affect your sense of well-being.

    No matter what is wrong, you must take control of your own thought life, and no one else can do that for you. We can have concern and even fear and still do our own research and still make our own decisions.

    Because of side effects I don't take anything at all except what I have researched to find out whether I want to endure the side effects. One side effect of a med a trusted doctor prescribed for me was DEATH, listed right along with nausea, etc. When I told my doctor he yelled "DON"T TAKE IT!" He told me he had no idea that death was a common side effect of that drug. I believe him because drug reps tell doctors about drugs and assure them they are safe and effective. Well, that certainly isn't always true.

    Below are some examples.
    (www.Rxlist and the Mayo Clinic site are pre-approved sites.)

    Read some of the common side effects of Norvasc, here
    http://www.rxlist.com/norvasc-side-effects-drug-center.htm

    losartan side effects
    http://www.mayoclinic.org/drugs-supplements/losartan-oral-route/side-effects/drg-20067341

    Esomeprazole
    http://www.mayoclinic.org/drugs-supplements/esomeprazole-oral-route/side-effects/drg-20074322

    I know what I choose.
    Let me know what you choose for yourself and your family.
    __________________
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    Old 08-04-2017, 07:40 AM   #11
    Indesperation
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    Re: Help me solve 8 year medical mystery

    The last few days have been a major struggle for me. I have been to the ER two times in one day. Almost came back the next day but gave up on the idea due to the lack of help they tend to be in my situation. But I have been fearful, and I wish it was something I could combat, but I don't see how I'm going to pull through this.

    The first night, I went to the ER around 2AM. My pulse kept dropping down into the mid 30's, and I felt absolutely horrid. It was the second night in a row, and this time I just got fed up with it. I felt weak, cold, and like I had already passed out several times by the time I got a ride over there. They did some cardiac workup, kept me just a little while, and told me to go on home and follow up with my electrophysiologist. I practically begged them to admit me because I didn't want to go back home and deal with that low pulse while trying to sleep again. I am by no means an athlete of any sort, and my pulse should never be that low. In fact, my resting rate was always average (in the 60's). But anyways, I went back home around 7AM and I actually fell asleep pretty quick (from the exhaustion of the last couple of nights probably). Unfortunately, things took a turn at around 9:30AM when I suddenly woke up out of bed with the worst chest pain I ever felt. I could swear I was having a heart attack. It wasn't the first time I felt such things, but I still to this day don't know what else it could be. I feel the muscles, the heart, in my chest seize up and clench into itself, I feel a heat spread around it throughout the right side of my chest, into my left arm, down my stomach. My pulse picks up pace in an extreme measure. I get really light headed, my vision was literally skewed where I was seeing things in a way that it looked like they were coming in at an angle, and my blood pressure was insanely high. I began shaking pretty crazy... leg kicking, tremors in my arm, my body jerking like I'm freezing, teeth chattering while I try to talk and get someone to help. I took a spray of nitro, and went back to the ER. Full cardiac workup, EKG, CT Scan, chest x-ray... I've been through all of it before. Another 24 hour halter monitor. It was a longer wait this time, but they sent me home again... follow up with your electrophysiologist.

    I call my electrophysiologist. They can't see me today. In fact, he's pretty booked up for the next couple of months. They'll follow up with me soon.

    I go home, I actually manage to get a nap for once. My pulse didn't drop below the 50's. I napped a good chunk of the evening. I took a sleeping pill before bed and slept great surprisingly. The next day, the halter monitor stopped at around 7AM. I unplugged it all as it was no longer recording. All is well until shortly after lunch. Suddenly, something else... I feel a weird bubble like feeling under the left part of my chest. Thought maybe it was just gas, but as I felt it, I also felt dizzy and light headed. I get out my blood pressure machine and it is recording an irregular heartbeat. I get out my stethoscope and listen. Sure enough, everytime I feel that bubble feeling (although it is below where my heart should be), there is an extra beat... kind of like a thud... and it's not at all in rhythm with the rest of it. My heart would have it's regular beat and then almost every other time, there would be that extra thud, and sometimes that extra thud would happen twice before the second set of heart beats. There was no method to it really. But it made me uneasy, as I was getting really dizzy and woozy during it. I called the electrophysiologist again. They were all in a meeting. Someone would call me back. After about 30 minutes, it went away. I was very glad. Still felt rough though. Electrophysiologist never called back. Then around 5:30 or so in the afternoon, it came back again, this time more frequent. It did it for over 2 hours. I wished dearly that that halter monitor was still recording. I had to go to the hospital to return the halter monitor anyway, so I got a ride there and returned it and I sat in that waiting room for a couple of more hours and waited for it to stop fighting the urge to just go back there again and let them run things on me again... and let them send me home again feeling helpless and alone. Damn this medical system. I have never felt so helpless in my life...

    I went to sleep last night. My pulse dropped down around 32 at one point. I closed my eyes, I shivered, I shook, I fought to stay positive and stay sane mostly. I would jerk awake numerous times in the middle of the night as if my heart was shocking itself back in rhythm. I slept in sporadic chunks. And here I am again wondering what I can do, where I can go, how I can fix this... 3 fairly different symptoms (bradycardia, major chest pains, very irregular heartbeat) all in the span of a couple of days, all heart related, but I have been through that ringer and no one ever finds anything wrong. They always want to throw age in as a factor of disbelief (oh, you're too young for anything like that to be wrong, you shouldn't worry about those things, are you sure you're not imagining it?).

    I am very tired. I am very numb.

     
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    The following user gives a hug of support to Indesperation:
    yayagirl (08-29-2017)
    Old 08-29-2017, 03:18 PM   #12
    yayagirl
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    Re: Help me solve 8 year medical mystery

    Please don't at all think I am making light of your experiences.
    I used to suffer severe anxiety, that gave me all sorts of symptoms no one could identify.

    Please buy vitamin B 100 (not B complex; that's not the same formula) and take one per day with food in the morning (more is not needed and will be excreted in urine). Take in the AM as it can give too much energy for night time use. BTW, for anxiety, make sure you eat regularly and get enough rest. Being too tired or hungry increases physical and mental stress.

    Make sure the vitamin bottle does not say Time Released. Just B 100. The B vitamins are what feeds the nerves, and yes it is what helped me the most. It's perfectly harmless. Whatever the body doesn't need that day will be excreted in urine, which may appear darker yellow in color...that's normal.

    I had to take it two weeks before all of a sudden I realized I was not an anxiety wreck.
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    Last edited by yayagirl; 08-29-2017 at 03:23 PM.

     
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    Old 10-27-2017, 07:56 AM   #13
    coop2008
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    Re: Help me solve 8 year medical mystery

    Indesperation,
    My heart goes out to you. I wish all the pieces would fall into place and you could get some answers. One thing I do know is the sleep apnea can definitely make figuring out the problem more difficult if not treated. As you know it can cause symptoms that will mask or mimic other issues. So I hope you are being treated with a CPAP machine. Keep posting and let us know how you are doing.

     
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    Old 10-27-2017, 06:22 PM   #14
    Indesperation
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    Re: Help me solve 8 year medical mystery

    Thanks coop. I was being treated with a CPAP machine but it needs adjusted and the doctors have been extremely sorry about doing so. I just had a heart cath done a couple of weeks ago. Still no answers there. Wish I would have done an EP study.

     
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    Old 10-27-2017, 07:59 PM   #15
    coop2008
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    Re: Help me solve 8 year medical mystery

    Quote:
    Originally Posted by Indesperation View Post
    Thanks coop. I was being treated with a CPAP machine but it needs adjusted and the doctors have been extremely sorry about doing so. I just had a heart cath done a couple of weeks ago. Still no answers there. Wish I would have done an EP study.
    May I call you Indy?..I just cannot believe there aren't other people with your same set of symptoms that could help. You just have to find them. Posting here was a good start. My first husband was very sick and I understand what it does to a marriage. I spent so many years in medical libraries looking for answers. Took way too long for him to get a diagnosis. Back to you....Since you are desperate...I know this sounds crazy ...but chiropractors can do amazing things you would not expect. Seek out someone experienced. At least a free consult. There is a product called Cytozyme AD that may help support your adrenals. Can usually get that at a good chiro. It's better to be taking it under supervision in your case.

    Wish I had more for you. Just know that your story is out there's hope for answers. The more time passes the odds are in your favor. Doctors need more data to get to the diagnosis. Do not lose hope.

    Last edited by coop2008; 10-28-2017 at 08:06 PM.

     
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