morgan617

The pharmacist won't tell you not to take it, or to take it, but he can certainly tell you if it's a common side effect. It sounds almost like a niacin rush type reaction...weird. But a lot of anti migraine meds are vasodilators, so who knows? I agree with Sally too, call the on call (that's what they are there for) and ask him/her what they recommend. It would make me a bit nervous too. The throat thing. Good luck! morgan

They average out the numbers and that's how they come up with 103. The report would say something like...highest rate 168 at ten am, lasting 15 minutes, patient reports no symptoms (or if you had them and wrote them down, that's what they would say) and the lowest rate was 53, lasting one hour 16 minutes at 4 am. They note how many early beats or runs of beats you had and what time. The computer looks at every single beat. Then it adds them up and divides them by however long you had it on and comes up with your average heart rate. Tachycardia of more than one hour in a twenty four hour period is considered abnormal. Good luck at Cleveland! morgan

Late to chime in on this, but everything has to be tepid, or I get horrific hiccups and will have a huge hiccup every time I swallow. Really cold stuff makes me nauseated, and really hot stuff gives me hiccup spasms. However, the tepid gives me reflux. I just decide which I want, usually hiccups over reflux and nausea. So I have a lot of hiccups....morgan

It sounds like you had a lot of pressure from the gas, then when you burped, it relieved it. If your stomach is full of gas it will put pressure upwards and I suppose give many interesting unpleasant sensations. If the bottom end isn't working, it's going to affect the upper end too. If you are bloated up like a blow fish, it seems reasonable that it would put pressure anywhere it could. I have felt pressure like my gut was trying to push into my chest. I drink salt free club soda because it makes me belch and then I feel better. I just have thuds and arrythmias all the time and don't really attribute them to anything in particular, though they may coincide with other symptoms I'm having. As far as the chiari, has anyone decided whether surgery would help or not? I guess I am confused as to whether they want you to have it and you are hesitant, or it has been decided you don't need it? I know it's controversial at best, from the little I've read. I am just not familiar with the type of problems you are having in those areas. Or eds. I guess it's like like my PP, I am certain there a only a couple of people here that know anything about it. I'm sorry you are having a hard time, the past year has been very difficult for you, but I find the "anticipation" of things are typically far worse than the actual procedures ever are. I barely have the energy to worry about things, I just want them over and done with, and then recover. I had a tooth that I let bother me for months, because lidocaine does not work for me. When I finally went in, it ended up being something minor and I had spent all that energy I don't have, worrying about something that was nothing. I'm not sure what to tell you. It sounds like you are contacting the right people, and with the symptoms you describe, there should be something they can do. Surgery, or meds or P.T. or something...but like I also said, I just don't understand chiari or EDS. I do understand gas however. I guess miralax is not prescription anymore and I used to give that to patients with Parkinson's who had a miserable time with constipation. Have you talked with a nutritionist that can help you with a diet that might keep you more regular? It's a thought. I hope you feel better....morgan p.s. I stopped picking up grandkids a long time ago and have legs too weak to walk any distance, so can't go out without a wheel chair anymore....it's a real bummer

I pee constantly and very tiny amounts. I have a history of interstitial cystitis which contributes, but I also just have a very small, not very elastic bladder. And a tiny urethra (pipe) Have you seen a urologist to see if there's a problem in your bladder? Unless the amounts are large, you may have a small capacity bladder, or one of zillion other things. Even vaginal irritation can affect this. So the best thing to do is, as per the usual, get it checked out. Good luck sweetie....peeingastormmorgan

I've taken atenolol on and off for at least 12 years. The only side effect I've had is increased fatigued, but considering the side effects I've had with some other drugs, I consider that minor. It does slow your heart down, but make sure you start with a small dose. I started at 12.5 and went from there. Good luck! morgan p.s. one really nice thing about it, is it's a really old drug and very very cheap!

Ernie, I have a terrible time with my gut too. I have had a colonoscopy where they found ulcerations consistant with colitis or crohn's, but he refuses to say I have it. I have discovered that I have become lactose intolerant in about the last year. The thing is, it is somewhat constipating for me, so I do milk products when I have stools that are crampy and loose. I haven't really found anything that helps much, but must admit I am a bit on the hypovigilant side when it comes to paying attention to what I eat and the consequences. The only thing I am fanatical about is salt. I never use it. The opposite of almost everyone else here. You know with our potassium problems, it becomes even more restrictive and difficult to find things we can eat. If we can eat them with PP, then they affect our gut. If we shouldn't eat them, they are one of the few things that don't affect it. And going without food is not an option. So it's a double whammy for us I think. I eat what I can and decide at the time whether it's going to be my gut or potassium levels that regret it....morgan

Sorry Pat, the neuro refuses to see me, because he doesn't treat conversion. My primary thinks the the neuro is brilliant and has taken him off the hook, so to speak, to do anything else. So, he now refuses to give me referrals, or do sleep studies, try new meds, or anything. If I want to try a med that might help, he refers me to the MDA doctor, who says she wants my primary to keep track of meds, who says she should do it. No one wants the responsibility of the consequences of my reactions to care..like meds and stuff. The MDA doctor believes all you can do is lower salt intake, (I don't eat salt ever and haven't for years and years because of inner ear stuff) and lower carbs. I tried one med, which she started at the highest dose, no arguing with her or she will drop you, she has plenty of patients and doesn't need a trouble maker. It almost killed me, but my Primary ok'd it, because she ordered it. He did that knowing full well how sensitive I am to meds, but he wouldn't have to take responsibilty for it, as she had ordered it. When I didn't tolerate it and couldn't get a lower dose, she stopped it and said, that's it, nothing else I can do for you. He said, well if she can't help you, what do you expect me to do???? Oh I don't know,... listen? I have asked for and been refused 3 other meds, that are for this disorder. By the way, almost everyone I've met online with PP, has autonomic dysfunction, so I have been teaching them things. They seem to be very intertwined, especially the type I have. There is no plan, treatment or otherwise. My primary says I'm probably going to have a cardiac arrest, and there's nothing to be done about it. Unless I get an internal defibrillator, and my cardiologist refuses to do that. No plan, no treatments, I guess the plan is to sit here and wait for my conversion to dissipate and be 100% better or have that cardiac arrest and croak. Now there's a plan of treatment for you..... Sally I know the person with the blog and the other one is where I got the info about Germany. Many thanks! I feel I have attempted in every way I can to get help and educate doctors, but I am just too tired to fight the system here anymore. I have hit my last wall. I have depression, major. I have become very apathetic, which pleases the doctors no end, as they can use it against me. And if I fight them, I am non compliant. When I first joined this site, I was full of fire to get to the bottom of things and fight for my rights and get to doctors, but I have declared defeat. The MDA doctor refuses to send me to a clinic that treats this disorder, at no cost covered by MDA, because she knows what she's doing. I'll live with my illnesses and my "stigmas." I looked at the pictures of you climbing those rocks Nina, and I thought Man, I wish I could climb the stairs! I am happy to see you are doing as well as you are. I truly am happy for the people that function on a fairly normal level. I think, I could climb stairs, it's just all in my head and I really believe that. Then I climb the stairs.....

Yes Sally, They (the board I am on and the doctors in Germany) believe I have the Andersen-Tawil form of this. You can be hyper or hypo or both, which does make it more difficult to treat. I fit the physical description, and the heart problems, along with the paralysis. Do you find it as amazing as me, that you found this info in a couple hours, and there are no doctors here that can find it at all? Even the MDA doctor believes there are only two types and no genetic testing available. She refuses to see me more than twice a year. I am the second case she has seen in 25 years of practice. I do understand why doctors can get frustrated, but I don't get why they can't believe. I am working with a doctor in Ulm, Germany, if you can believe that, to help find my gene mutation. For instance, if you read the article, the occurance is 1 in 100,000, making it relatively rare. True conversion disorder is 1 in 1,000,000. My doctor told me PP is too rare for me to have it, but conversion disorder is not. It has 3 more zeros than PP in it's rarity. But he doesn't have to treat conversion disorder, or prove it. He just has to say it and it's Gospel. But you have to test for and do various things for PP. I guess the decision on what to do is a no brainer. He gives me enough potassium to kill the average person on any given day, but will not commit to the diagnosis. My gastro called and asked him if this was for real (because I now require a potassium IV during procedures, which is a "pain" for him) and he said, he had no idea, but for now, he guesses he will treat me like I do. Then I wonder why my gastro treats me like he does.... To make this even more ironic, the neuro that killed any hope of me finding any more help here? He went into neurology because he has a brother with Muscular Dystrophy. PP is under the umbrella of MD diseases. He stated I "unequivically" did not have PP, because my potassium did not drop enough. It states clearly in every article about PP, that you can stay within the normal range of serum potassium levels, because it's not the serum potassium that is the problem. It's the way the potassium works within the cells, not the blood. Thank you for posting that. I am sorry, that was a major vent and I really try not to be reactionary (mainly because it really wears me out). But it is also very off putting at times. However, being blown off is too. Thanks for your support on this....sorrymorgan

They don't even return my calls anymore. They do not give me the results of any tests, even when I ask. They won't even do any tests, unless I beg. Or order and pay for them myself, then he can't get the copies from me. I can't get in to anyone else. The guidance is, ignore her and maybe she will go away and/or die, and we won't have to mess with her anymore. I swear I am going to have to die for them to believe I have ever been really sick. My obit will say, She died of conversion disorder. Sorry, but having a lot of problems with doctors here lately, or forever. My primary did talk to a kidney guy last fall and he said there couldn't be anything wrong with my kidneys, with NO testing and having not even seen me. They won't find anything if they don't test will they. My cardio refused to give me an event monitor for my new arrythmia, stating my pacer will pick up anything of significance. (sustained 180 or above) I used to get tested for stuff, there is a lot of documentation of heart stuff. My ANA is high, no follow up, my cortisol stim test is abnormal, no follow up. I had a 24 hour EEG that didn't show seizures, the neuro said I was destroying all the lives around me with my mental illness (I know I don't have seizures and knew before the test) and that was the end of everything, until I contacted the MDA and didn't need a referral to see their doctor. She runs the muscular dystrophy center in this area. She did muscle stim tests while I was paralyzed, which clinically proved a major problem. I take enough potassium to kill a horse. And I still got conversion on my last ER visit. Know why? I have myotonia (sometimes certain muscles are flaccid or very weak, sometimes they can't let go of things, they become frozen) I had taken hold of the bed rail, because I thought I was going to fall, and I got myotonia in my hand and couldn't let go of the rail. This is very common with my disorder (think the jaw post on the other side) however you can't possibly have PP and myotonia according to ER docs, even when you have researched published papers that say it is common. Even when you have a specialist that verifies, in writing, that you have it. Even when there are over 30 genetic mutations that have been found to prove it's existence. If you have even a basic understanding of how potassium works within the muscle cells, it is quite easy to see how your muscles can be flaccid or stiff, depending on what the potassium is doing. (Trapped inside the muscle, or leaving too quickly) I read everything I could find on "true" conversion disorder. It is estimated to be one of the most misdiagnosed mental health disorders. Psychiatrists agree, it is incredibly rare occuring in about 1 in 1 MILLION persons. If you read sites where non psychiatrict doctors write about it, it is very common (that should be a comfort to the instant psych doctors out there) but if you read what is written by actual mental health professionals, they are apalled at the number of people misdiagnosed. The neuro proudly told me he diagnoses 2-3 people a WEEK with this disorder, so I shouldn't feel alone. I live in a city of less than 200,000. That means my city has the highest number of conversioners in the world. We ALL live here. My primary's guidance, as he sees it, is it's easier to do nothing and call the neuro/instant psych "brilliant" and my therapist of 16 years "arrogant" and pretend I don't exist anymore. Do I sound a bit disgruntled here???? We can't even pay our bills, so going somewhere else is out of the question, and besides, when Mayo, NIH, Vandy, and Rochester, NY saw all my "psych" problems, I got letters stating there was no reason to see me. Even with documention of POTS, TTT's, ablation, all the symptoms. Because I seem depressed rather than sick. I had an ER report say I wasn't very animated, my affect was flat, therefore he deduced somatization. I had no idea we were supposed to cartwheel in to ER's and entertain them when we were sick as a dog, or else we are obviously faking it. I went from 150 pounds to 98. I told my gastro I couldn't swallow, choked all the time and everything gets stuck. I eat beechnut baby food. He started to dilate my esophagus more and I have gained a few pounds. (about 10) There are times he can't get the dilator down that pipe. However, the last time I saw him, he said I "apparently" seem to think I have swallowing problems. I am not sure how we are supposed to deal with this stuff, when every where we turn, we are treated like this. I so envy so many of you. The ones with doctors who may not understand, but listen and try to help you. The ones who don't immediately fall into the old cycle of well, if you weren't crazy this would be easier, syndrome. I laughed out loud at the last doctor who asked if I had been abused. I said "yea, horrifically, by doctors." I have become quite the burned out angry old hag in the last couple of years. I guess I have finally gone off the deep end and just need to admit that "brilliant" neuro is right. And when the day comes that non psych doctors (who believe they can be psych doctors, with a mere snap of the fingers) show one iota of compassion for the mentally ill, it will be the day I drop dead of conversion disorder......I think a button may have been pushed here, or it's still the estrogen problem, that I have been told isn't a problem. It's in my head.....morganzilla

How often is a mental health diagnosis made by a non mental health person questioned? In my experience...zero. And even with documentation that I have a "physical" disorder, I am still diagnosed only with mental health issues. This tends to cause my negative attitude about this. Say I am depressed, say I have OCD, say I have a mood disorder...but also say I have valid physical problems and I am fine. Question the all or nothing diagnosis and I can accept that. But that has not been my experience and it has caused me unending suffering. No new doctor will take me on, no specialists will see me. Not one questions the fact that everything wrong with me is psych. Even with letters from a real therapist telling them they are wrong. My primary said my therapist was "arrogant" for saying I did not display any signs of conversion, but he said the neuro that diagnosed every single health problem I have as psychogenic, "brilliant." Am I the only one that sees a double standard here? I understand the mind body relationship....it's the doctors where I live that don't. That is the problem for me.

Great news! Hope the meds work well for you! morgan

Well, I am really sorry you are going through this, but I am certainly glad they are doing something! I hope they can get it under control. Just taking me seriously would be enough for me. My cardio would say, well it's not 180, so what are you so upset about? I'm glad it sounds like you have doctors on top of things. As far as the chiari, it seems there is a lot of controversy about it, and that's the end of my expertise. You can always find someone who will operate, the question is, do you need to be operated on? You can always check and see how many surgeries these clinics do and don't do, so you can see if they lean towards conservative treatment or drastic measures. If you've got a clinic that operates on anyone and everyone, I'd be a bit leery. But it's also vice versa. You want to find someplace where they have a record of conservative and non conservative treatments that are more evenly matched. That's my only suggestion. Good luck sweetie! morgan

Thanks Melissa, I didn't mean to imply that anyone should take potassium. Mine is under strict control, a prescription, and with doctor's orders. Too much potassium can be very dangerous. Sorry if people mistook me to be saying try it. I never recommend drugs, or least hope I don't. People, especially ones already compromised, should not take things without discussing it with their doctor. morgan

It's sad that you have to "gloss over things" because if you are truthful, you won't get help for the real physical stuff. I am not in the UK, but have been pigeon holed in quite the same manner here where I live. One psych diagnosis and it's all over.....anything physical magically disappears...isn't it great how that works? If only some one would tell my body it works that way.... I wrote a letter to my primary telling him I have been more abused by doctors in my life than any other abuse I have suffered, whether physical, sexual, or mental....how pathetic is that. morgan

I stated in an earlier post that my son's pulmonologist says it is not normal to remember dreams well. You may wake up and remember a dream, but by afternoon, it's gone. If your dreams are so vivid you can remember them quite awhile later, you are waking up during the dream, which is not normal, and means you are not getting restful sleep. I have a lot of dreams about being sick..I paralyze in my sleep too, and dream about that. However, I have had no luck getting my primary to refer me to a specialist. I have asked him twice. He says there would be nothing we could do about it..I'm not sure how he knows that, without doing a sleep test, but I can't get into a specialist without his referral. I am weaning my beta blockers and valium to see if that helps, however, if your brain has "trained itself" to have a certain sleep pattern, it has to be retrained to a normal one. I find I can sleep several hours a day now, and then sleep all night, and am still so exhausted, that at times I feel like lifting my arms is the supreme effort of the day. It has become quite annoying that I seem to be more narcoleptic than my hubs anymore, and no one cares....morgan

Dani, I didn't know! I hope you are doing well, in full remission, and it's good to see you again! People just come and go sometimes. I have disappeared for quite awhile, but always come back. I know there are people on here who have had the same thing and am sure you will hear from them. Nice to hear from you again sweetie! morgan, one of the oldest timers

Well, I peed myself for the first time yesterday....it was humiliating. It was just a bit and I didn't even feel like I had to go, in fact, it was after I had just finished going. I think there can be no mortification left and blammo, here's bummer time..... Hubby has had to help me in the bathroom and I think, what else. Then the bank called today and said my signature had changed and I needed to come in and fill out papers verifying it was my signature (I also got a voter thingy back, saying the same thing) I hear ya tea. I think my word has become resignation. A bit depressing I guess, but I don't get so angry and waste energy on it like I used to. I love the words you came up with for hope. At least it's not hope-less. There with you enjoying the tea and company.....hugs, morgan

I can't take any, but my son did well on celexa, till they wanted to go above 20 mg. Effexor was AWFUL for him. It is the only drug he has ever had major problems with. He took paxil for a long time, and had no problems at all getting off it, unlike the effexor he was on for a few weeks. His biggest problem is he seems to develop a tolerance and then they have to switch. Right now he is on Lexapro. He got nauseated for the first week or so, but seems to be be better. We switched him to taking it at bedtime, so we will see.. It only makes him sick for a few hours, but it's not fun to be nauseated for a few minutes. None of them has affected his sexual function or his heart and he does run a bit on the high side of normal. morgan

I get this occasionally, but it's not POTS related. It's a potassium thing with me. Not sure what to tell you, except so much of our tension is in our jaws, you know teeth clenching and stuff. I used to be completely addicted to gum (dry mouth reliever) and I had more than one dentist say, I had the tightest muscles in my jaw, that they had ever seen. I couldn't get my mouth wide open. That's about all I can think of, sorry...morgan

I use a timer. I have to take meds every three hours, so set it again as soon as I take the meds. I do not set it until I've taken them, as I get distracted too. It's worked really well for me....morgan

Welcome sandyshell! Glad you are making some progress with the doctors. It always seems to take a bit, but hopefully you will start feeeling better very soon! Congrats on your marriage! morgan

Just to clear up any misconceptions some of you may or may not have about me. I call my primary, on average, about once every 4-5 months. I have seen him once in the last 7 months. I have called after hours 4 times in 24 years. I don't call for every new symptom I have. I saw my cardio twice before he put the pacer in. The initial visit, and the visit to schedule the pacer. I have seen him twice since 9/06. I have called their office 3 times, I rolled over in bed and my pacer moved about 2-3 inches from where it was placed, before the wires had time to implant in the heart muscle. I see him every six months, because I have to. They call me and make the appointment, not the other way around. He is required to check my pacer 4 times a year, two by phone and two in office. I have been to the ER twice in the last 2-3 years. Each time I have received a conversion disorder diagnosis, which keeps me away. If I go, it's because I am really bad and my DNR forces my family to have to respond, as it is a conditional one. They would be held liable if I died and they did nothing. If I go by ambulance, I am too sick to tell them no. I do not call uneccessarily, I do not panic over every new thing that happens, or that's about all my life would be about. I do, however, think, if something new is as symptomatic as this is, it is not unreasonable to expect to get it checked out. I am not a doctor hopper. It would be impossible where I live, but besides that, I am just not. I do not like going to new doctors, as most have preconceived notions before they ever see you. (Trust me, I have worked with them and listened to many conversations on this topic) I have a complex medical history and realize how frustrating I am to all of them, including the ones I've had 20+ years. Of which there are three. I know I don't just have POTS stuff, there are other things in the mix, that just make me appear more crazy. I realize that my PP may be flaring because of a POTS thing or vice versa, or my inner ear is reacting to my "low grade" lupus, or sjogren's. All this being said, for the money I have put out, and because I am paying for a service, (they are most certainly not doing me any favors), I deserve to be treated like a human being. And it is NOT my job to figure it all out and then go teach them. I am paying the big bucks and they are making the big bucks. Not so much now, because I don't ever, as a rule even make appts anymore. I have had a prn order for labs for 7 months and used it for the first time on Monday, because I happened to be in the vicinity. All I have been trying to say, is I am a difficult patient only because I am complicated, not because I am a colossal pain in their butts...someone who calls 10 times a week, goes to the ER every other week for the same complaint (I have had this arrythmia at least four times since the initial one, and have not returned to the ER no matter how sick I feel) My point here is this.....since I do not ever drive these guys crazy, you would think that on the odd time I do call, they would listen. I do not cry wolf, they know that, and so I believe they should pay attention when I say I'm a bit concerned about a new symptom that I am not tolerating at all. I freely admit I have psych problems, depression, ocd, dysthymia, etc. That is not in question. What IS in question, is why when I so seldom bother these guys, they absolutely refuse to listen on the rare occasions I do. By telling me I don't have symptoms, except attention seeking disorders. Because Joe Blow, who's never been sick a day in his life, doesn't feel his occasional pac. I got a new batch of estrogen and I am beginning to think it's a placebo or a bad batch, because I feel like I have to defend myself here, and that's a pretty rare, if non existant, thing for me. If that's the case, sorry...but I don't call for frequent thumpity thumps. I went 5 months with 7-8 second pauses and dropping on my face before I got aggressive. The broken vertebra was the final straw. Now I am rambling and my dogs are in another room and waaaay too quiet. (one of them was almost choked to death by her collar just before Christmas, maybe I have PTSD, although this particualr rythym started last October) morgan

I do have some junctional beats, but if there's even the slightest blip, they say, nope it's all sinus. Funny how that wasn't true when I worked on a cardiac floor. When my rate was dropping to 30, I was having juctional escape beats and the doctor said it was all sinus. When I got a copy of the strips, that wasn't true. So, I am not sure. I would have to get every recording of every ekg or whatever I've had done, but since they just see what they want to anyway, It wouldn't really matter. The pits, but the way it is. I do know rhythms (although I can't spell it anymore) but when I worked on a cardiac floor, we had extensive training. My doctors just don't give a rip whether they lie to me or not. It's easier to gloss it over than try and treat it. I am used to it, so not sure why this has bugged me so much, but I just hate being lied to. morgan

Hi Lois, my primary thinks the ablation caused my need for the pacer too. I am set at 60-150. It's set only to record rythyms 180 or above, and only if sustained. I have had arrythmias since I was in my 20's, so I am very familiar with them. It's only when a new one, or one that causes significant symptoms, develops, that I wonder about it. I think if I worried about every one I felt, I would be a very busy girl! LOL. My new occupation. The weird thing , with this newest one is, I can't feel it! I know it's there from the symptoms I am getting. I feel just horrid and couldn't figure out what the deal was and thought , well it can't be my heart, or I would feel it. Just to be sure, I listened and HEARD it. So did my son and hubs. It was a galloping sort of thing. Not up to 180, but pretty flippin weird. The rest of them are no problem, but this thing knocks me on my rear every time it happens. It would just be nice to know what it is. I think you are right, we are very sensitive to our beats, more so than most people, just like we are with meds. No one will touch me with ablation again. It will not even come up in conversation. I sometimes think, at this point, there could be a lot worse things than being completely pacer dependent! morgan