lmt033167

so sorry you're going through this, that's exactly what I feel...it's horrible and Ive gone through so many doctors with all the same answers - there is nothing else they can do for me medically since everything has been exhausted in the past 2 years... my bp used to be 90/60 and never went higher but the past 3 months it's hovered above 150/90 and I still feel horrible...testing after testing they can't find anything else wrong and tell me to go to vanderbilt or mayo because there's nothing else anyone can do for me...even if I go to one of those I already have done everything (including pacemaker/icd) I can for my HR and BP.... one dr said he's just trying to throw water on the fire so I don't flare up as much - the one thing I've found that does help somewhat Hydrocodone; raised my bp ( I think too much) and I don't hurt as much but my body has become used to it after 3 months and the pain, numbness, spasms and tremors are worsening hang in there and I hope you feel better

thank you everyone, I'm just so lost battling this thing alone when doctors don't understand - at least my primary tries and helps me any way I can, my cardiologists and now this EP just push me off to vanderbilt not even offereing to help treat me; not sure what they expect patients to do or how to cope

I don't know what to do and feel really lost...depressed and it's affecting every part of my life including my marriage. I finally got in to see a new EP at a large university near me because I've been having arrhythmia problems and my ICD keeps making my monitor go off. After 45 min of extensive testing; he says I do have lead failure most likely leaking of the fluid from the insulation corroding or a fracuture. I didn't think of it until I got home and talking to my husband but my cardiologist I had in May 2010 told me if it was the leads I would have acute pain in the middle upper abdomen, which started in Sept 2010 but my primary and GI thought it was my gallbladder and my mind is just the pits these days with memory so I didn't even remember that until now. The EP thinks my polymorphic VT and arrhythmia are not due to cardiac problems but said he felt like it was due to my nervous system and failure; which has progressively gotten worse over the past 2 years....I really question if this wouldn't have happened had a doctor sent me for testing back in 2004 when I noticed a huge increase in my syncope. Basically he said what all others doctors have said - I have an ICD (which may or may not work) and have been treated medically all they can there isn't much else they can do except wait and see if i get better or something else is found to treat ANS issues. I've had tons of tests done in 2011; found out my degeneration in my spine and OA is not the cause of my numbness & muscle spasms in my arms/hand since I have no damage in my cervical spine. I have bone spurs on top of the DDD & OA front and back sides of the spine and I am herniating discs right and left...3 lumbar and last week herniated 1 in my thoracic spine and spent a full month in bed. Some days I don't have any feeling in a certain limb then it will go away and it goes somewhere else; making it difficult for my dr's to figure out what's causing all this. My dr says my gait is more disturbed and I'm fearful that I'm going to lose all ability to walk sooner than we had thought. Sometimes it will be so quick I have no warning and fall or trip hurting myself falling into things. A few months ago my hand str went from 4/5 down to 3/5 last month and I've noticed a big decrease in being able to use my hands like cooking opening bottles stuff like that. The dr tried me on Dexilant for the nonstop nausea I've had since surgery in Aug 2009; it worked wonders then my insurance (First health network) denied coverage so they had to switch me to Pantoprolazole which works, but not as well as dexilant but it's $180 monthly with insurance paying. The only good thing is my pain doctor put me on Hydrocodone and I can actually sleep when I take it before bed; but it doesn't last long and after 4 hours I'm awake but I can't complain because that's better than waking 50-70 times in those 4 hours. the real clincher to it all is I'm still fighting disability and trying to find an attorney who will take my case...I do have my primary on my side but my cardiologist said no way would he touch the SSA paper work because he doesn't know enough about dysautonomia to be honest about what I can't or can do. here's yet another doctor telling me there is nothing more medically they can do; I have such a complicated case - I'm frustrated I've spent thousands of dollars out of pocket this year testing and jumping through hoops trying to get my insurance to approve Mayo or Vanderbilt even though my current EP and cardio both agree I NEED to go for further testing. I can't get new insurance; I'm on the only plan that will take me with all my prior medical problems and SSA says I'm not disabled because I can go to work daily and work an 8 hour day yet my primary says no way so it's a struggle to even pay for healthcare. sorry to sound so down

I'm trying to figure that out too...the past 3 months my bp has been 150/90 and higher with NO midodrine so my primary suggested bp meds to lower it, cardiologist said no and wasn't too concerned said it was due to gaining weight - I just don't know anymore what's wrong or what to do...raising my bp hasn't helped I still feel as crappy as I did with low bp; at least then I didnt have non stop pressure and pain in my head from high bp

From age 9 - 44, my bp "normal" was 90/60 with feelings of lightheadedness, fainting, fatigue etc. My EP prescribed Toprol and it kept dropping so they sent me to the ER and said they had never seen a person with bp as low as mine who was sitting up and fine - they gave me a shot (can't remember what it was) hooked me up to IV's and pumped me full of fluids which I could float a boat with lol even with the shot; my bp stayed at 70/40 and hr of 40 for 11 hours then they said it was just my whacky system and felt I was stabilized enough to go home with a warning of no more Toprol. During my TTT my bp plummeted to 0 and I had no palpable pulse; which I'm told is rare but not what caused it - I think it's due to Nitro; and still seraching for answers

sorry you've had a cold on top of all your other things going on if I didn't have my support groups with those of you who understand, I may have fallen apart a long time ago - I can't thank my friends that' I've never even met enough and show how grateful i am for the support and love everyone shows =) I found this on someone's journal and it was exactly the words I needed: Do you know what the relationship is between your two eyes? They blink together, they move together, they cry together, they see things together, and they sleep together, but yet they never see each other; ....that's what friendship is....

I have NSVT runs almost daily; sometimes more. I've had this going on for as long as I can remember and been told it was due to different things. I've had long runs that are caught on monitors but I may not necessarily pass out with them; and my TTT shows when I faint, my heart stops. Not clue what the cause is; they suspected ARVD but tests were inconclusive...I've been like this since age 9 and they didn't take me seriously until age 42; when I was dx with malignant arrhythmia's; NCS/OI and had a pacemaker/icd implanted. I have a small notebook that I keep track of everything; date, time, symptoms so I can check when I get my ICD interrogation back and sometimes I'm surprised that I don't feel the NSVT runs or my HR almost 200 - I guess I've gotten so used to over my life it's just the "norm" for me, other times I can feel them and get very symptomatic.\ hopefully they find a cause for yours

Dani I'm so sorry you and everyone else here is feeling like I do. It stinks and it's just not fair is it? We don't ask to be sick and I think most of us here would rather be out living our lives having fun like we did before we got sick. Some of us have multiple problems and can relate to each other or at least sympathize with what we're going through. It's ok that you feel bad because you no longer have the life you were used to; feel it and be ok with the way you feel. I go through roller coaster emotions - anger, guilt, hurt, etc then I start feeling bad about myself thinking all I have to do is just get the energy to get "over" all my issues...then I push myself too hard and end up in bed for 3 days instead of just a few hours, then I kick myself because I'm setback so far. I missed buying any gifts last year for my children; luckily my husband did it for us and would call and ask what I thought about certain gifts. I can't drive at all anymore so I'm stuck at home and that angers me like I can't tell you - makes me feel hepeless. My youngest son is Autistic which is stress enough since I'm the only who's taken care of him until I got sick, my husband has learned the hard way about how difficult it is to care for a disabled child, now the poor guy has to take care of our youngest daughter and me too - I ask him often if he's overloaded and needs to talk. Now, on top of my ANS problems, heart problems, Endometriosis/Adenomyosis and I just found out my problems female problems may be cancer. The stress of hearing this from my dr put me in a tailspin and I spent all wknd in bed and so tired I feel miserable. I'm so thankful my husband bought me a new laptop and I can sit in bed, on the couch or recliner and "talk" to others who know what I'm going through. If I didn't have my support groups and friends who keep in contact online I don't know what I would do. You're not alone and if you need to talk, vent, however you need to express it - it's ok =) we're all here for you and hope you feel better.

Def talk to your GYN if you're having pain during intercourse, it may be something very small or very serious. I waited for years to tell my dr out of embarrassment until I started passing out (talk about embarrassing); at first my hubby was hesitant because he thought he hurt me and didn't want to see me in pain, but after awhile he didn't let it bother him any more. I've had Endometriosis all my adult life, and it was pain enough but in 2005 I had surgery to find that I have Adenomyosis also along with hundreds of polyps and fibroids. Last Friday I was at my GYN and explained that the pain was a bit different and some other symptoms and was shocked to find out that the symptoms I'm having can also be caused by Endometrial Cancer so he's sending me to have tests this week. Those of you having pain, please get this checked out asap =) Lisa

Glad you found it useful. I hope everything settles down and you get relief quickly. thank you! wow that is a great chart; that explains SO much. I have these symptoms my neurologist said was probably due to peripheral neuropathy and had me set up for an EMG but my ins cancelled so I couldnt do it. New insurance now so when I go back to my primary in March she's going to set one up for me with a new dr.

I can go from 60; which is the lowest my HR is allowed to be with my pacemaker/icd to 195 or 200 in a blink...usually it's from exertion of any sort because of my heart problems. At my last ICD interrogation I had NSVT runs every other night with hr's in the 190-200 range along with daily fluctuations in those ranges. Scary because at 220 my ICD shocks me My dr upped my midodrine to 10 mg from 5mg 3x daily and Inderal twice daily to see if this would help. I haven't noticed any difference yet though.

I tried Allsup and Binder & Binder, both said because I work 10 hours per week, they will not take my case

I've been off the forums for quite a while. I've been fighting SSDI alone and lost - they denied me full out and said even though I qualified medically, mentally I am "fine" and because I have kept working 10 hours per week to pay for health insurance, I am not "fully" disabled. They said because I can think for myself and keep a checkbook they do not consider my conditions disabling. I refiled on Jan 3, 2011 and finally just gave up after talking to 2 large disability firms in the past month. I have to have health insurance and can't quit working those 10 hours, we just can't afford it. I just got new insurance in 2011 through the Pre-exisiting condition plan with the gov't; which has been a great help. I am getting retested for everything with my new primary and finally found a GREAT cardiologist who knows tons about ANS issues and referred me to Vanderbilt, because even what he knows he said they know more and can test me fully and then he will coordinate my care with them. yay! I may finally get some answers. He's a bit dismayed my other dr's basically gave up on me though and thought my case was too complicated with all my heart/ans issues. He says my case intrigues him and he's getting together some doctors who will keep searching until they find what's caused my problems. It's a great possibility that I do have ARVD and that's what's caused my heart problems, he says everything fits and he's going to go over my case piece by piece and look at my MRI the hospital did. I did find out I have some other things to add to my list of problems. I finally got some records from the hospital and dr's in Dec 2010 I didn't have before. I found I was having multi focal pvc's before my ablation and they noted I had suspicious Congestive heart failure and chest pain issues along with an enlarged heart with no known cause. Also, my spine has degenerated more rapidly than I thought it would from old injuries and I am being retested for the changes in my pelvis, neck and thoracic areas. I'm looking forward to going to Vanderbilt sometime in hopes of some answers hopefully this summer. Along with visiting my gyn for my endo/adenomyosis; I'm going to a Endo and Rheumy =) hope everyone is doing well

I am so sorry you had to go through this, it's similar what I went through when I went for my SSDI phych eval and told I should be in a mental institute; had another mental disorder and not just suffereing PTSD or depression. Well yeah we're scared and frightenened, some dealing with emotional issues because we fear our health is deteriorating and something may happen to us. I think we all know our bodies best and if we say we're haivng a problem walking, standing, talking drs should take our word for it - they need to walk a mile in our shoes and see how it feels. This kind of treatment infuriates me and I would get another eval to show it wasn't just psychogenic and ask them to correct your records.

we went out for our Anniversary this wkend and I decided to try this....Had 1 drink at dinner and shared a 2nd with my husband (Long Island Iced Tea) about 20 min after I noticed the pain throughout my body lessening and I felt more relaxed and symptom free than I had in years. I wish I had slept well, but I can't say I did - but that could be due to my OSA also. I'm torn between the lesser of the 2 evils - drinking alcohol daily or taking pain meds; either way I could get addicted...hmmm

my EP told me to sit/sleep in a recliner when I could, I didn't know this was the reason why though - glad to have this answered

I first started fainting at around age 9, but didn't get a dx until age 42. I've been told over the years it was nothing, I had low blood sugar, low bp, low platelettes [sp] anaemia. I was dx'd with NCS, OI, moderate obstructive sleep apnea and malignant heart arrythmia's....the list goes on. Jan 2009 I was walking with my family at night and had what felt like my heart stopping and I blacked out, happened another time that week, so I quit walking for a bit, then we started back - it didn't do it again so we kept walking. Before this happened I had walked & ran for most of my life off & on. Fainting, palpitations and CP were a thing I just learned to live with and was "nothing" since my drs didn't think anything of it. In August 2009, I had a TTT and RF ablation (very frequent pvc's) that showed when I faint, my heart stop and my bp tanks. I have something wrong that makes me go into nonsustained and sustained polymorphic V-Tach - they still don't know why and I've had many tests to find out the cause. I had a pacemaker/icd implanted because I went into vfib during my EPS. My BP is like a crazy rollercoaster ride daily - if I try to do something - my bp won't go up to reach the point it needs to be to compensate for exertion or activity and it will go up, then it will drop to nothing in a blink with no warning. Something showed up in my exercise treadmill about my QRS segments being off and my echo showed I had several different things wrong with my heart - I developed cardiomyopathy from my pvc's, I had mild MVP & TR, LVH. I've had sob, body aches & pains and joint achiness nausea, fatigue for as long as I can remember, heat intolerance - no sweating and cognitive dyfuction started last year. I started having neuropathy in my left leg & foot last year around the same time that they told me may have been due to the amount of pvc's I had and the loss of blood flow/oxygen. It continued to worsen so I went to a neruologist who confirmed neruopathy; who also suspected an AI. It spread to my hips, both legs, left hand/arm (have burned myself from cooking) right eye started twitching and tremors, now in left eye also. The pain in my legs & hips go from tingling sensations to excruciating pains daily, twitching and numbness in my legs sometimes makes me trip or fall; my feet sometimes swell 3 or 4 times their normal size and makes it difficult to stand or walk. I'm still waiting to go back to my neurologist in June for more testing & see what else she thinks is wrong. The more I think about it, the more I wish I had gone to Mayo last year as suggested by my cardio instead of going to different doctors around here, I may have had more answers by now.

It's time for our health insurance renewal, it's a business plan and because of my health problems in the past year and the new laws they upped our premiums by almost 30% starting next month (renewal). We're already paying right at $1,000 and adding almost 30% is way more financially than we can handle, so we paid our last premium and set the policy up to cancel. My husband and daughter can get Humana One for $250 mthly and our son will go on state insurance $100 mthly, but I can't get insurance anywhere and can't stay on the business policy. I know the new medical laws have taken effect and after 6 mths I'll be able to get in the medical pool, but not sure what to do until then about care, meds etc. I would appreciate any suggestions anyone can give me.

I'm going to talk to the psych dr about this also and see if she has any suggestions, I think he's just having a hard time knowing he can't fix me or feels helpless because he can't help me - Im a big baby I get nerve pain through out my body and it's excruiciating and I cry, which he doesn't see very often. It was such a sudden thing for me...I was walking running going 1000 miles per min each and then my heart decided to quit...reality hit him hard knowing I could die at any time and he doesn't know how to handle it, I don't either for that matter and then all my other medical problems just started piling up making it even more difficult.

thank you futurehope - I understand he needs time, like I need time to adjust to the fact i'll never be the same, its frustrating and I can see why people with chronic illnesses may go through depression I think I'm angry that he doesn't believe me when I'm sick - he's seen me right after surgery and what I've gone through for the past year or so...I guess that's part of what I'm going to have to talk to the dr for - I have to just get over it because he can't or won't understand that my body has betrayed me I just need to find a way to help him cope with my changes, maybe I should take him to therapy with me

You know the more I question myself, the more I believe I did this to myself; made myself sick - working 70+ hours a week and sleeping 2-3 hours max, burning both ends, just to prove something not only to my husband but to myself. Burning my body out so it couldn't heal and repair itself all for nothing I even ruined a Christmas surprise a few years ago because I HAD to work and check orders on Christmas Eve after the kids went to bed, my husband asked me not to work, but I insisted it would only be a few minutes, and saw an email confirmation for Disney yearly passes I set us both up for failure and for him to react just the way I thought he would - or maybe I wanted him to resent me and leave like everyone else in my life did, who knows - I'm beyond trying to figure myself out lol that's what I'm going to a psych starting next week for. This got me to thinking; do you think we intentionally set others up by things we say or do around them so their reaction to us is what we want it to be subconsciously? i.e. I don't feel like anyone cares, so I complain about how I'm feeling to try and get them to understand how I'm feeling? If this is the case, what do I do to get family/friends to understand the pain I feel and know how serious my illnesses are?

So sorry to hear you're going through this and had complications during your first surgery. I'm thinking of you and wishing you good thoughts for your surgery and hope you have an easier time with this one. Please let us know how youre doing after and take care of yourself. Lisa

Having a chronic illness and suffereing through it is enough and if we don't have the support of our family and friends it can leave us feeling lonely and like no one cares. Being sick makes me feel weak and helpless, I can't even drive or walk, can't stand or sit for certain times, can't exercise or go to the beach anymore, I can't run around and play ball with my children, heck what's the next step, someone going to wipe my rear for me? lol sorry you get the point. Don't get me wrong, my husband is a wonderful man, he's just a bit obtuse about things sometimes, he's never had any tragedy or anyone close to him be chronically sick that a doctor can't 'fix". Here's an example - for 2 years before our youngest son was born, I worked 8 - 9 hrs daily, drove 30 min to take our oldest 2 from and to school; then drove an hour to work, after work drove an hour to YMCA afterschool care, drove 30 min home; hubby cooked dinner M-F; I cleaned up the house and helped kids with homework, then walked for 30 min before taking a shower, on the wknds I cooked & did all the yardwork and billing for our business; we never stopped - we took the kids shopping, disney, museums, zoo's etc. Up until I got sick in Jan 09, I still did all of this except I worked in our home with his business and mine. The older 2 children left home, our youngest son is Autistic and he's had 15 therapy sessions weekly for 7 years. I've fixed houses, built fences, helped replace a roof, dug ditches, cleaned pools; I never get my nails done because they would be ruined in a day lol I've always enjoyed yardwork and mostly used a push mower [powertools muhhahaha] I felt guilty about my husband being the only one outside our business working and have overcompensated for so much - and he got used to things the way they were. He worked and came home and had to do nothing, I did it all and you know what that got me? he resented me for always making all the decisions and taking care of everything I had no clue he felt like that and thought he liked me doing everything - it made him feel like I didn't need him; useless. I told him recently, well you got what you wanted - you make all the decisions now and take care of everything, how does that make you feel? he's overwhelmed to say the least and not handling it well and told me he doesn't know how I did it all before What do we do as the patients who are suffering, how are we supposed to teach the others around us about empathy and caring and that some symptoms are silent and that we may need them to listen even if they don't understand what we're going through, how do we do that without seeming to complain all the time? Maybe our loved ones need to put themselves in our shoes for a day, week, month and see how they would feel if we didn't want to hear about it or be empathetic towards them...hmmm that would change the game plan all together I bet. If the tables were turned, I'm sure we would step in and do things differently. For the most part, we know what feeling in good health feels, but someone cannot know what a chronic illness feels like unless they've suffered through it.

sometimes empathy from others, the ability to feel what we're going through; doesn't happen until they're going through something similiar themselves, which is unfortunate I could have written your post and have broached this subject several times - I suffered for over a year with some 50,000 + pvcs and heart problems, have passed out for awhile continually, when my heart stopped in Feb 09, I started getting really concerned, but I was still "over exaggerating" to my family. It wasn't until I had heart surgery in August and found out how severe my ANS problems were and that my heart stops when I pass out, that they started to get concerned. Since then, it's been a down hill climb - they were concerned and now it's like WHEN are you going to get better, you're always sick etc etc you all know the drill I suffer migraines too, sometimes days on end and have to just deal with it, yet my husband got his first migraine last month and he took off work and stayed in bed all day. I've found this forum a great place that others understand how I feel and I don't feel like all I'm doing is griping about how bad I feel

I've had female problems since my early 20's and never heard of it until I was dx'd. They will most likely check for adenomyosis in your tissue they send to the lab; along with confirming anything else they find Adenomyosis is uterine thickening that occurs when endometrial tissue, which normally lines the uterus, moves into the outer muscular walls of the uterus and the uterus may increase to double or triple its normal size. It can be quite painful, only curable by hysterectomy or menopause [crosses my fingers for the change to hurry up!]