morgan617

Mae, My EP says I have runs of vtach, which can certainly be serious, but says we will address them when they become "lethal" I told him that would be when he is interrogating my pacemaker after it's removed from my body before I get cremated? he finds that hilarious. I don't. I guess your doctor at least admits he's not God, but he doesn't admit he's a jerk either. Some of these guys just have no bedside manner and never will. As nurses we used to say they would make great pathologists, never having to deal with the public at large. Many will cover their lack of knowledge with odd little attitudes that are hard to figure out. I don't like my EPS, but he is quite bright. My next visit, I intend to ask to transfer to a regular cardio, as he could care less about my rhythms or my pots. he may not like it, but a regular cardio can do just as well, or at least can't do any worse! I'm not sure why they act like this sometimes. If they have been in practice awhile, it just may be they don't want the challenge of "complicated" stuff anymore, so have a tendency to blow things off. He did at least get you on a monitor. Do not be surprised if they tell you everything is fine, even if you do have arrythmias. They just don't seem concerned as much as we feel like they should. A plague of symptomatic "benign" stuff should hit these guys for a couple of months and then maybe they would learn a bit more compassion, but I wonder if it would help. I hope you get some answers though and maybe once he sees that you do have stuff going on, he will have his attitude adjusted....morgan

Rene, I took care of literally hundreds if not a few thousand people who had heart caths over a 13 year period. Never saw any complcations from the cath after 24 hours. The biggest one is bleeding, and I never ever saw or heard of it except within the first day. The knot in your thigh is a hematoma or bruise and you can get a pretty good sized bruise, but this is very very common! The fact that your BP came up nicely clearly indicates you are not bleeding. This is arterial, so it would be a very fast thing to happen. With no improvement from taking in liquids. At this point, I wouldn't be worried about complications of the heart cath itself. I remember when I got my pace maker and the doctor came in and in a very mundane voice explained the procedure and the complications. Of course I knew it all, so no big deal. Then out of the blue, he said, oh yeah, I guess I should mention you could die. My husband and best friend were there. We all just burst out laughing. I have to tell you, the pacer never bothered me, the site never bothered me, but the meds to put it in....oh did I feel gross! For about a day and a half. The only thing I would worry about the cath itself is very severe back or abdominal pain. A bruise may or may not form and spread and look much worse than it is. Severe back or abd pain is an indication of a bleed, but remember, I have never seen this except in about the first 10 hours or so after and it's typically by people who are very non compliant about lying still. And back then, people who had heart caths stayed overnight, so it's not like they got up and left a couple hours later and we never knew what happend. It was always a 24 hour stay till about 2000 or so. And I only saw it one time in all of those. You got a whopping dose of steroids and your body has to adjust to them leaving the system. I have no idea why they didn't just give you a shot in the behind, which proves to be much less symptomatic and lasts a lot longer without all the side effects of the high dose pills. The last time I took steroids, it was a full two days before i stopped getting surges from them and it was a dose pack, which is a smaller dose they titrate you off of. The life of the drug is the same though. if you have klonipin or any type of benzo you take occasionally, you can try that to help calm your system down, but it's like going through a withdrawal. It will get better, but the shakiness, lightheadedness and all the symptoms you describe are withdrawal type symptoms, not heart cath problem symptoms. I hope this helps. Your body will rid itself of this stuff and the half life of steroids is not that long, it just feels like forever when going through this. If you are not feeling better by tomorrow give the doctor a call, but my guess is, all this hyper stuff will settle down on it's own. Take care sweetie. morgan

I had a cath several years ago. The knot is very normal. My guess is you are having more problems from the drugs than the cath. Hopefully they will wear off fast, keep pushing the fluids. Steroids can make the most normal person feel weird and out of sorts and you got a pretty good dose of them. However they don't stay in your system forever, like some drugs and my guess is you will start feeling better very soon. Remember, none of us react to stress well to begin with, so just take it easy for a couple days and let your body get back to baseline. The dressing should just be a bandaid or a bit of kelp they now often use, so no big deal. It will just look like a vampire gave you a bit of a nip! I was a cardiac nurse for 13 years, so know some people just feel better than others after this. Hope you are fine by tonight or tomorrow! Oh and glad everything looked super! morgan

I don't, they get their money's worth from me, but my son does it all the time. He says how he feels at that exact second, not how he feels over all. I have no idea why....morgan

I am sorry to hear this. The gift that keeps on giving, unfortunately. I have the type that causes cold sores, a different type, but in the same family. I get them very infrequently, about one every 5-6 years, that is, until this year. I have really been plagued by them, but it has also been a really stressful year. and it can be dormant for a very long time before it rears it's ugly head. I feel fluish before they break out, but typically feel better once the blister appears. Were you feeling this sick before the antiviral? I actually use a cream, acyclovir, as opposed to an internal systemic med, so I don't get the systemic side effects of the drug. If I get it applied at the first tingle, it tends to really lessen the course of the sore. From 2 weeks to a few days. 6 weeks is a very long time to be dealing with it, have you seen a doctor and are they sure that's all that's going on? Herpes of any kind can bother the nerves and so you can feel discomfort long after the active faze of the out break. Shingles is another one. You get the blisters, but still can have the discomfort long after the blisters have healed, because they follow the nerve tracks in your body. It sounds as though you may have something more along those lines, as opposed to herpes. Shingles can happen anywhere, (I took care of a patient who got it in her eye of all things) and is caused by the chicken pox family. I would get a second opinion, if you haven't, because this doesn't sound normal for run of the mill (classic) herpes. And you shouldn't be embarrassed, there are so many people that suffer from this! good luck sweetie, morgan

I am so sorry! As a person who has lost many beloved pets, I can imagine your heart break over this. My symptoms have prevented me from some things that I really needed to have the strength for, so I am so sorry for that too. Tamis will live in your hearts forever, and you were there at the most crucial time, your baby was still alive. My sympathies and thoughts go out to you! morgan

At this point, I just try and stay away from just about everything, so few things have helped and so many made me worse. If I just had one thing, it might work better, but as my doctor explains, you take a med that helps the thing it's meant to but makes the other things wrong with you worse. When I reach a point where I am even somewhat functional, I just never want to rock the boat, it just seems to throw everything off and takes me forever to get back to baseline, if I even do, which I don't anymore. I broke those bones back in September and I am still waiting to get over it. Gees.....morgan

The only thing that expands when I exercise are my symptoms. I mean it, I go down faster than a rock in water when I exercise. Even just going up on my toes several times will take me out. I think I belong in the Guiness book of records for being intolerant to it, which really helps with the ever expanding buttocks.

I guess that's the one good thing about my pace maker, I don't have to ever worry about it going too low...

Your heart rate can be pretty low and as long as you aren't symptomatic, it's ok. It should be above 50 though. Many atheletes rates run in the low 50's because of conditioning. If your body is used to running a certain way, a big change can feel weird. For instance, many people with diabetes actually feel worse when their blood sugars are at the normal range, because their body has adjusted to it being too high. Then they start feeling much better. If your body has learned to compensate for the higher rates, you may feel a bit funny while it adjusts to the lower rate, but you will adapt quickly. I used to always check my pulse before I took a dose, but betas have a pretty short half life, as a rule, so stopped after it was ok for a few days. if i stop them for 2 days, I shoot right back up and remember how miserable I actually was when my rate was too high. I take atenolol 25 mg three times a day. morgan

Woo Hoo...always good news to hear sweetie! Hope it keeps up....morgan

I'm with Nina on this one. Some of us are just born with crap. Some day they will know, just not today. morgan

I haven't had the pleasure of migraines...yet. The closest I've come is when trying to get off hormones, for whatever reason i don't know. I think if I stopped hormones I would get meno induced migraines. But I do have sensitive skin get the pony tail syndrome on other parts of my body. I also get zaps, not as badly as I used to, but they are always in my head and drive me crazy. Trying to explain them to the doc was real fun too. I finally gave up and now just live with them. morgan

Broken shell, If you are on disability, you have to have part B. You need to go to a durable medical equipment store and they are very helpful. You must need to use a power chair in the home, not just for outside excursions. They assume someone can push you in a wheel chair. I have a little tiny transport chair that weighs 15 pounds, folds up very small to fit in any car, and rolls really well. My insurance would not cover it, like they did the power chair, but they only cost a couple hundred dollars. For people like us, that's no small amount, but it has been well worth it. A transport chair has all small wheels, so someone has to push you. I do not have the stamina to push myself, so someone has to push me. But it has been a life saver more than once. The medical supply store you go to will have both things and have a lot of experience, as a rule, workng with insurnace, SSDI, and doctors. Good luck sweetie! morgan

I lost 50 pounds or so, then when I fell last fall, I gained it back, or most of it. It's feast or famine, literally. Feeling your pain! morgan

I can poop on demand, I swear. I have up to ten BM's a day. Not diarrhea or constipation. I think my bowel is just not sensitive to stool being in there until it's way low in the GI tract. Like atonic bowel. it just doesn't feel the oomph to go until my rectum is full and then I just go enough to empty that. Then a half hour later I've got to go again. My son said he wanted to cut his head off to get rid of his migraines and I said I wanted to shoot my bowel out to get rid of those problems. Somedays, a Lot of days actually, I think I'd prefer a colostomy than the gut I've got. (hubs said he wanted to cut his feet off to get rid of his plantar fasciitis. I said, we would never be able able to go anywhere together, jake with no head, me with no gut and Dave with no feet)

My skinny son has it too. central sleep apnea. I'm not sure there's a relationship to pots. I've had two sleep studies that show only very mild apnea but NO stage three or four sleep, which is where the restorative sleep happens, and then they wonder why I complain of daytime fatigue! I think pots has been shown to be disruptive to sleep but as for specifically in regards to apnea, I just don't know. Hope it turns out ok. morgan

Glad you figured out the culprit. I have thought at times maybe I should wean off stuff, then wondered, why? If it helps, it's pretty much the least of my problems. Is there a particular reason you want to wean off, do you feel you don't need it, or are you worried about dependence? I think many of us struggle with the stigma of certain drugs, but man, I say if it helps, why stop it, there are so few things that do! As far as your wife, I am really sorry. I am one of the lucky ones and I thank God every day. My hubby has stuck by me and I have a very supportive son. I think people who have maintained really good health all their lives may have a harder time with this than people who have had a lingering illness, or anxiety or whatever. My son actually understands more about my illness and I think it's because he's been sick almost his whole life. So, although my husband is very supportive ( he bought me a chair and made me use it, I was the resistant one, till I realized it was hurting him too) I'm not sure he gets it, he just gets that I'm really sick. Many people on this forum have been in your position and it breaks my heart. And as a nurse, I'm sure you it saw it in your jobs. I'm not sure what kind of nursing you did, but I saw non supportive families all the time in hospital patients and in clinics. It is very sad. And in the long run, I believe many people regret the way they have acted. I took a joke to my doctor a couple weeks ago. It was a guy on cloud in heaven, on the phone. The caption was, "hey doc, remember me, the hypochondriac? Guess where I am?" It made him laugh, but he said unfotunately it's not all that funny. Nope, it's not. morgan

This is just beyond me, all these phrases wern't used when I started here, and then I was gone for a bit. It was OI and POTS and little more. It's too much for my foggy mountain brain. Although I have always believed none of us fit into any one box and we all overlap. morgan

I actually feel and do my best when I get up. I crash around 1 pm till about 7 and then get a second wind. And just when I think I've got it figured out, it changes and does the opposite! I wish I could figure it out too! morgan

I can't ever remember not having it, but stessors and things do seem to exacerbate. The only thing it could be, if not genetic and we are looking for some kind of trigger, was at age 2, I got into 2 bottles of baby aspirin and ate them all. I was in intensive care for 3 days. I've hated the taste of them ever since. But I have been sick as far back as I can remember. I really don't think I care what the literature says, there's too much about it we don't know, we don't know far more than we do, so I don't care how I got it, only about how to treat it, which is symptomatically at this point. My guess is the longer you have it (although I hope you get over it as fast as you got it) the less you will be plagued by the why's and how's, like many of us who've had it forever. It just becomes more important to address how to feel better, than what caused it in the first place. I believe I have read where it could be genetic, but it was long ago and far away in some other galaxy....morgan

I think it's very common for us to have problems titrating up or down on most drugs. My doctor gets this fully, but many don't. And I don't require nearly as much as normal people. I absolutely despise going to an ER because they will typically make me worse by not listening to me about this, and then when I react to the meds, they say I'm "anxious." If it says cut it by half, I cut it by a tenth or the same with going up. it's not like I'm in some big hurry anyway. My son had absolutely the worst time getting off effexor and he has never had trouble stopping meds before. it broke my heart to watch it and he had only been on it a month. So, I just do everything ten times slower than I'm told to. I hope you are feeling better gary, nothing like constant adrenaline rushes to push you over the edge...morgan

I have always been very sensitive to any arrythmias I have. I can even feel my pacer check itself every night and the pacer people say that's really weird. They change the time without telling me and then when I call them on it at my next visit, they are always shocked. der....

Constantly and my jugulars will get very distended in an upright position also ( it's bad enough people have commented on it) ...horrible sensations. morgan

Lois, It can cause a lot more than pots symptoms, it is very serious. Do you have one? They can usually patch them now, but it is essential to keep enough spinal fluid in your body. Usually the most common sympton is a runny nose that just drips clear fluid constantly, but it has a host of symptoms all it's own. morgan