morgan617

My son is starting to show some POTS signs, on top of everything else. We were trying to get SSI for him, and he was being seen by a few people. I was told, in no uncertain terms, I was not to become involved in the process. (Fry me a river, I have taken care of him for 26 years now and no one knows him like me...he is as passive as a rock and very stoic) Needless to say, he got rejected as they felt psych notes were not needed, except by a person he had seen once, as opposed to the therapist that had seen him for 5 years. Nor were medical records older than 6 months needed. I was appalled of course, but to no avail. Well, it turns out, this psych nurse guy gave him Effexor without discussing it with his primary, and took him off his celexa, which helped him tremendously. He was told not tell me anything. aarrgghh.....So now he's off celexa, which helped, and on a drug that is making him so sick he wants to die. He is trying to wean, and then I read that some people can never get off effexor because of serotonin syndrome. His primary had no idea any of this had been done (because I wasn't involved) hates effexor and is very angry. The psych person told Jake he hadn't spoken to him because of privacy laws. Excuse me, if he is a health care worker, he should be reviewing meds with a primary he expects to be doling them out, as he is quitting this job. And since Jake takes over 30 pills a day, you'd think there might be some discussion between them. So now Jake is really ill on it and even sicker, trying to get off it. We can't get a weaning plan for this drug from the guy that ordered it, because he won't return calls, and nothing to help with the side eefects of weaning from his primary, because he's angry about all of it. I sent the primary a letter of apology, because I don't blame him for being angry, and he's been a great doctor for Jake. I called vocational rehab and had a letter the next day, with his counselor of 5 years saying she did not believe he could work at this point. I called the psych person and called him a dumb***. That felt good. Meanwhile Jake can't get this dose lowered. So if there is anyone out there who's had experience with Efexor XR and weaning, I'd appreciate your input. The literature states it is just about the hardest drug to wean off ever and you can have effects for months. Great.......If and when he does get off it, he will have nothing on board, and then we will be dealing with anxiety, panic and agoraphobia. Gee, I wonder why everything wrong with me is flaring........ Thanks for letting me vent and for any help or input.....morganzilla

Amitriptyline (elavil) made me pretty tachy (I had to stop it) so just watch for that. It made my mouth very dry, but I already had problems with that, but I sure did sleep well! Good luck...morgan

My pcp refuses to order a sleep test for me. My son just got a cpap and much prefers the prongs over the mask. He does find that he wakes up with the prongs sitting neatly on his bedside table and no memory of pulling it off, but I can certainly tell when he's worn it and when he hasn't. morgan

I'm so sorry sweet pea. My fatigue is mind boggling too. I did find out from jake's doctor that people who have vivid dreams have a type of sleep disorder. I have such vivid dreams, it feels like it's all I do all night. I did write to my doctor about this, but of course, have heard nada. I just thought I'd bring it up. The thing is, there are so many sleep disorders that cause severe fatigue during the daytime, you may look into that aspect. I can't get anywhere, but maybe you can. I know you have felt awful for awhile now and I can't help, but I think of you so often. Just know you've been in my thoughts...morgan

You can call the lab and ask them how long it's good for, or just give the doctor a call and ask them. It depends on how it's written. I have a prn (as needed lab) for electrolytes and it's good for a year. If the lab has a problem, they should not have a problem giving the office a call and getting it re ordered. If they tell the office you are there, it will get ordered right away. Good luck, hope you start feeling better...morgan That's what they are there for, shouldn't have to feel guilty about calling them....

I get really weird visual things, like perception problems and stuff. It always weirds me out, but it goes away. I have seen a few opthamologists without any luck, but you know how it goes, anything new, get it checked.....morgan

Adria, My dad is just like your mom. When I called and told him my then 11 year old son had arthritis, his reply was that he (dad) was so much worse off and you want to hear about pain, well he could tell me about pain. Well, I had an 11 year with his kind of pain and he was late 60's. He just must always be worse than anyone, whether it's a cold, arthritis, headaches, you name it. I gave up letting it get to me a long time ago. People set in their ways will never get it. We all want and need approval and validation from our parents, and sometimes it's just not forthcoming. It is not the child's bad, it is the parent's bad. The only thing you have done is get sick, and that's not your fault. The next time your mom says something, just tell her you are sorry you got her genes in the health department. Then let it go. Karyn is right, anger is so hard on a healthy body, let alone a sick one. I do really understand this one and am sorry. Sometimes it is out of fear and sometimes it's just plain narcissim. Either way, it's no fun. My dad told me to "just not think about it" and it would go away. All I could do was laugh. Sometimes you just have to laugh sweetie....morgan

Maxine, I have not done the phosph prep, my doctor doesn't like it, it's a personal thing, I guess, because he has partners that do. It's a much lower volume of fluid to drink, but the taste is absolutely horrible, so I hear. After a few glasses of golytely, it's no picnic either. It's not while you are drinking it, it's the aftertaste that's killer. I never do these preps without lifesaver candies in one hand and the drink in the other. The second it's down my throat, in goes that lifesaver. And for these preps, they are appropriately named! Also, people do tend to have a bit more nausea with the phospho soda, so if you have anti nausea meds, you might consider one for prophylaxis. But stick to the clear liquids and get those lifesavers! Good luck sweetie...morgan

Yea, we had that discussion, I don't ever remember waiting for anyone to have 30 seconds of vtach to go check on them when I was a cardiac nurse, and I never once heard of any one calling vtach benign, until I had it. It's beyond me anymore.

Until people have felt we feel on a daily basis, they will never get it. Some people, it doesn't bother me, some I just want to strangle. Like the ER doc that said I was lucky because I'm not sicker. WHUTT???? It just depends.....morgan

And please remember cardiatech, that it's always benign until it's not...LOL. If they are standing there for 30 seconds, give em a swift kick. I do not tolerate my ventricular rythyms at all. They are completely different for me too. The weird thing is, I don't feel the vtach as forcefully as atrial arrythmias. Maybe because I have no perfusion at all with vtach. I feel grey faced, can't sit up, and feel like vomiting. It's awful. Anyway, I hope it goes well for you and they discover what's up. What I wouldn't do to say I had that many doctors taking care of me....how pathetic is that???? morganmeister

The tests have to be done under very strict conditions or they are just skewered. Levels are typically supine and standing, a lot of med restrictions and things like that. They have drawn mine and they were abnormal, but they were done incorrectly, so I wasn't surprised when told there didn't need to be any follow up. Even the endocrinologist I saw once, didn't know how to draw them. So can't really help you, except they may may be weird because of that. morgan

Corina, thank you, you are ever the sweet girl.. Karyn, she did tell me to have them contact her, but maybe a note in hand would be better. She is the head of the MDA here and should be taken seriously. Just telling them to contact her certainly didn't help, but maybe if I did have it in writing, it would help. I hate to bother them, she is incredibly busy. But I am betting she would do it for me. Thanks for the advice. Hope all are having a wonderful day! morgan

Nina, if this hasn't happened before and since it made you so ill and symptomatic, you need to talk to your cardio. Hopefully he will give you an event monitor and you can catch it...although my real wish would be it never happens again. I will quote you...."get thee to a doctor.."

My guess is, since you are getting yourself to these appts (if you go by yourself) and you are driving and not having syncope...they are assuming it is not as big a problem as you feel like it is. Do you just come out and ask them about it? For instance, did you tell the gal that you felt cruddy and is it caused by your low bp and narrow pulse pressures? My cardio thinks until I go into vtach and actually croak, my arrythmias are completely insignificant and I am completely unable to drive or get anywhere without a wheel chair. I am in NO way justifying their apparent disinterest in what's going on, I am saying that some doctors and health care providers just don't get it, even if you really look and act unhealthy, let alone if you are able to drive and shop etc. I am having a very hard time trying to get my thoughts across the way I mean to here. I have never seen a doctor concerned about low bp's in the context of an office visit, unless the patient is actually syncopal. Before my hypertension suddenly appeared, my bp was always like yours. I never felt well, was always fatigued and stuff, but I was always told my bp was "great." No connection between that and how I felt. As far as the cleansing, hopefully you are doing a go lytley or half lytely, as you don't have the same problems with dehydration. These do not deplete fluids from your system, they just liquify the stool in there and get rid of it. The others can pull fluids from the cells and be dehydrating. Even with the lytley's, it's important to drink as much fluid as possible. Did they say why you are having a barium enema? They are not nearly as accurate as colonoscopy. I am not all diminishing your symptoms because you can drive...I'm just saying that whether you can or not, whether you appear ill or not, sometimes it doesn't make any difference, if you are up and around, most health care providers are not going to deal with low bp's as opposed to high bp's. Sometimes they don't even deal with high ones, and I don't think even most cardiologists deal too much with pulse pressures. In all my years of nursing, i never once heard a doctor mention concern over that. Unless it is a cardio that actually uses these as research or something, I just think it's not addressed. Like long QT intervals. Not one cardiologist has ever mentioned mine, although the risk of sudden cardiac death is greatly increased by them. If I were you, I would just point blank ask them. My guess is, they will blow it off and tell you to drink more fluids. I hope you can get this addressed and your concerns taken care of. Good luck with the barium study. I'm havin my gastro and dilatation on Monday, so will be thinking of you. morgan

Thanks sophia, the MDA doctor actually told me to have the ER or any doctors that have a problem with my diagnosis to call her and she would verify and defend me. Also offer treatment plans. They just flat out refused to do it. So, I finally get one that defends me and the idiots refuse to contact her. Man. ajw, never worry about questions, I'm an open book, I never mind telling people anything they want to know about me, I don't have anything to hide. This is really the only place I feel I can open up sometimes. And I know you only ask and recommend out of concern. I actually did have a case manager at one time, but they are only allowed to follow you for 3 months. Trust me, when I tell you I have tried just about everything there is. PP is Periodic Paralysis, it's under the umbrella of the Muscular Dystrophy family. It's a genetic disorder. It has over 30 genetic mutations, although here in the states they only look for the 3 most common. It causes you to have severe problems with any "shift" in your potassium levels. The channels that let potassium and salt flow in and out of your muscles to help them contract and relax are defective. The result is you become stiff as a board or flaccid as a quadraplegic or a bit of both. Your potassium level may never leave the "normal" range, but it shifts and it's the shift that causes the problems. The channels won't let the potassium/ salt out or let it out too soon. I become completely flaccid, unable to move, talk, or swallow. I can't get my eyes to shut, and lately it is affecting my breathing. I also probably have the type that causes a lot of arrythmias. Mix that with POTS and you have a train wreck. My blood is in Germany right now being tested for the specific mutations. MDA is my muscular dystrophy doctor. The weird thing is, so many of us on this board suffer with borderline or low potassiums. Only one type of PP messes with the heart rythym. That's the kind they think I have and it makes us very high risk for sudden cardiac death. (my mom died of sudden cardiac death) PP is very rare. But what I was going to say is, so many of the symptoms overlap with POTS, they can't really be distinguished sometimes. Many people here suffer with weakness and fatigue, dizziness, etc and have the borderline or low potassium levels. these are ignored by the doctors as part of pots, and that's what happened to me for several years until I had my first "paralysis" in 2005. The only reason they didn't diagnose me with conversion then was my potassium was 2.6, which is a pretty critical value. But after the first one, it was psych all the way. I enjoyed that concussion and other wonderful injuries , because people were "paying attention to me." From then on, it was conversion, regardless of the fact that the very definition of conversion disorder is that there are NO physical findings that correlate with it. Go figure. Even my therapist has asked doctors to stay out of her field and she will stay out of theirs, to no avail. I am on a forum for PP, and virtually everyone has autonomic issues of one sort or another. I think I was born into a really bad gene pool and got saddled with a few things, which muddies the waters even more, and makes it even harder for me to get any decent help, because my symptoms fit into one until I have one that doesn't and then they stop listening, because then I'm just crazy. If it's not cookie cutter perfect, it's psych. This is why I just need to vent once in awhile and then I need to let it go. I have a jumble of things (like people here with EDS and OI, it muddies the waters) and no one has the patience or is willing to even attempt to do some untangling of symptoms, to help even a little. So, I fall through the cracks and will die as that crazy attention seeking person. My hope is, I will have the genetic verification by then and they will feel REALLY badly about how they have treated me (no heaven for me, I fear ) Anyway, thanks again everyone for your support! I am actually already much better emotionally. One thing about really chronic terrible illnesses is, you just lose the incentive to hang to anger, it's too energy consuming....gratefulformyfriendsmorgan

ajw, The pacer is just that. I had tachycardia all the time, then suddenly dropped from 130 to 30 in 1-2 beats. I was hitting the floor. I had terrible hypertension, but when they put me on the beta blockers to slow down my heart rate and lower my BP, it really exacerbated the tachy-brady problem. (They feel this is caused by scar tissue from an ablation they talked me into in 2003, but that's another story, that EPS discharged me almost immediately after the ablation, because I got so much worse) So they put in a dual chamber demand pacer, which means it only fires if my rate goes below 60 (97% of the time), and then put me back on the atenolol. It will not shock me for vtach. It monitors my heart and will record any ventricular rate at 180 or above. But that's it. It even shows I've had runs of vtach. I don't even tolerate atrial arrythmias anymore. When the ventricular lead fires occasionally, it really bothers me. He is an electrophysiologist. I was discharged from the only other group with an EPS doctor. I got a letter from him in the mail stating he felt it would be better if I found another doctor. The consensus was guilt, because he knew better. From a nurse friend that worked there. So, I ended up with this one. There is another one in this practice but they do not allow you to "doctor hop" within the practice. Even with a pacer, an MDA doctor who has given me an unequivical diagnosis of PP, I still got the conversion diagnosis 2 weeks ago. She refused to call either my primary, my cardio, or my MDA doctor, stating I just needed to get over my anxiety. She asked me what I was so afraid of, and I felt like saying only doctors like you. The closest University or city is 300 miles away and they have refused to see me without referrals. No pcp will see me here without my records, and with 1000 psych diagnosis', no one will see me. My insurance will not cover me anywhere else if we have doctors here that are what I would be going for. I just needed to vent. I will sleep tonight and hopefully be over this tomorrow...I don't have the energy for this. But thanks everyone for letting me vent. I'm done. I am sending all these guys How Doctors Think, by Jerome Groopman, so they can see what jerks they are. It doesn't even take them 11-18 seconds to decide about me...they've done it before I roll in the office.....

Good luck missy girl....be a good fishy and don't lose that port....you know how I feel sweetie, words don't do it. mamamorgan

Thanks guys...I appreciate the responses. I'm about at the end of doctors, I swear. My pcp had me get labs drawn a week ago to make sure the potassium wasn't going too high. I called and asked them to fax it to me today and he hasn't even looked at it yet. He had it last Monday afternoon. They sent the labs from my ER visit, which were almost all abnormal and I was told they were fine. I can not get into any other doctors without a referral from him, he tells me he has talked to other doctors and they say they don't want to see me, so no reason to refer and he really cares.....then doesn't. I am tired of being lied to and not taken care of. That cardio spent less than 3 minutes (we timed it) with me, and he will bill my insurance well over 200 dollars. I think that visit was worth about 200 cents. Pushing it. And there is documented vtach on my pacer! But it's benign, because I didn't have to be shocked out of it. And people wonder why I am so tired of pursuing anything any more....morgan

As some of you know, I have a pacemaker. It is set to record sustained or long runs of v-tach at 180 or greater. Two weeks ago, I had to go to ER by ambulance because of some arrythmia I did not tolerate at all. In fact, hubs had to call an ambulance. By the time they got here, it had passed of course, although I had lain here and tried to deal with it for over an hour. I had conversion disorder, of course. I had 80 meq of potassium before I went to the ER and it was 3.7. They gave me 50 more orally and 1000cc IV with more in it. I was still so weak, I couldn't walk, they never ran another K+ level and I got a psychogenic diagnosis, even though I had gotten almost 200 meq of potassium before I went home. I had the same doctor I had last time I was there. Is that luck or what. She told me I was "very lucky" some people with periodic paralysis actually have heart problems. UH DUH......I felt really really lucky right about then. Today the cardiologist told me that my pacer would pick up anything "significant" ie...vtach and then we could worry about it. I told him if I went into vtach at 180 or greater, he would be checking it out at my autopsy. He laughed at me. No holter, no event monitor, nothing. I asked him if he understood that I was sick? he said, see you in 6 months, have a nice holiday and walked out. I feel so lucky......morgan

I can't have salt, carbs, sugars or their substitutes, caffeine, or any of the good stuff, unless I am willing to pay the price. (somedays I am, until I am ) I have acquired a taste for Beechnut baby food. It's low in carbs and salt, for the most part. The fruits don't have a lot of starch like the Gerbers does. If I could eat whatever I wanted though, I'd live on any kind of really dense moist cake and frosting. Boy do I miss that. I do eat Salmon and really like it, but then it's so stinky..... We will be doing a lot of Stouffer's ready to bake for Thanksgiving, so I will be a beechnut baby. The amount of sodium in that stuff is killer....

Hi Sue, I am not at all familiar with mast cell problems, but wanted to welcome you! I know there are people here with those kinds of problems and am sure you will hear from them.....morgan

The purpose of tubes is to get rid of fluid in the eustachian tubes. That may take awhile. The sound may be uncomfortable because your hearing has probably been quite blunted and now you are hearing better, although it seems too loud. You should adjust to that. My son had the TV and radio blasting all the time and for awhile after getting his tubes, everything was too loud, but he adjusted quickly. You should not be having any drainage. I got a shot of steroid directly into my middle hear, and it left a little hole. Every time I blew my nose or changed altitudes, I could feel a woosh of air. it lasted about a week, then stopped. Hope you feel better soon! morgan

My hubs has narcolepsy and if he takes gingko, it hypes him up so much, he can barely stand it. He hates the way it makes him feel. This is a guy who's been on high dose ritalin for many years! I would never take it for that reason....but that's all I know about it. I don't take any supplements, as I have never found anything that doesn't make me throw up. My son does the Flinestones gummy bears and I can't even get those to stay down. I only want to say one other thing. When working in a hospital many years ago, we lost two patients to acute onset kidney failure (they had sudden cardiac death from potassium imbalances) from "natural supplements" I only caution people to be very careful, as non regulated meds can be as lethal as some of the regulated ones. I wouldn't advise taking anything you don't know about, whether prescription or over the counter, without discussing it with your PCP first. They aren't all as traditional as many of us think and many do know quite a bit about homeopathic or supplementation type things. And many "traditional" doctors are not as opposed to these things as people think. Good luck....morgan

Never had that info on my sheets, or heard about it from anyone, including docs. so can't help....sorry. morgan