morgan617

Suzanne, benzos have a horrible stigma, dating back to the early 70's. At one time, valium was considered one of the most abused drugs in the U.S. I remember my dad took it, but he was prescribed 10-15 mgs at a time. 4-5 times a day. I'd be on a ventilator in a coma, at that dose. I take 1-2 mg at a time. I take 6-8 mgs in a 24 hour period. There will always be people that abuse drugs and doctors that allow it, but these drugs do have their place. Conversely, there will always be people that hate them and doctors that refuse to prescribe them. Like everything else, they are not for everyone. There are doctors here that won't give more pain meds to terminally ill patients, because they might get "hooked." I kid you not, I've seen it. Like getting addicted to pain meds is the priority when you are dying. I worked for a doctor that flatly refused to give any patient pain meds for chronic back pain. He hurt his back 3 years ago, hasn't worked again and is totally dependent on pain meds. Until people have walked in our shoes, they have no right to judge. If they don't work for you, or you are totally against them, fine. However, to refuse that treatment to a patient or blast anyone for wanting something that helps them is not okay either. Benzos can be hard to get off of, the weaning process can be long. But look at my son with his effexor!!! And it's the most used antidepressant out there right now. Some people have never been able to go completely off it, and no says anything, because it's not "that class" of stigma drugs. Jake has never had any problems stopping a med before. And he was on it, maybe 6 weeks. I'd say, if a person has to be admitted to a facility to wean off benzos, then they are taking pretty massive doses of it. And my guess is, it's a fast wean. From the board here, you don't hear of people taking that much, typically, like me, it's a fraction of the recommended dose. All meds have their place, and as most of us know, we all react differently to everything, benzos or otherwise. My doctor said he was happy to be my "dealer" for my 1-2 mgs as needed if it helped. He could live with that. So I can too. Ultram was a very popular drug for it's non addictive nature for several years and then oops, it was discovered that it was addictive and was being sold on the streets. I believe if something is detrimental to the quality of your life, then stay away from it. But if it is one of the few things that helps, then by all means, use it. I have heard good things about Lyrica and you may want to try that. But you just don't know. I believe just about any drug has the potential to be abused, whether it's psych or physical or both. You just need to weigh the good against the bad. Even at the small dose I take, because I have taken it for 12 years or more, I know it would be a weaning process. Many people equate addiction with dependence. It's semantics I guess. if you want to call me an addict, be my guest, at least I am a feeling better on it, addict or not. And I have never developed a tolerance, or had to raise my dose. We are expected to be savvy about our own health and I think that must extend to the drugs we use. I would never judge anyone on here by the drugs they use or don't use, because I do walk in those shoes. Drugs and usage of them have been a heated topic on here in the past, but I don't think it should. We all struggle just to get through each day, and don't need the added stress of being flamed for wanting to feel better. I am sorry you seem to have pretty close minded doctors, but if you think about where you were when you saw these people getting weaned, it wasn't a POTS floor, it was a unit for people with a lot of other things going on. Not just abuse of drugs. There's always another side to the story, and we need to keep that in mind. Sorry about the novel. But for my 2 cents, I'll live with the stigma, because the only downside of this drug I've had, is the judgement of people who know next to nothing about how or why I use it. I can live with that too. As you can see, for some it's ssri's, for some, lyrica, and for some benzos. As unique as we are, so are the drugs that help us...good luck sweetie! morgan

I don't tolerate klonopin, but take valium, which is also a benzo, it really helps with the horrible surges I get. I started it for an inner ear disorder, but realized a few years ago it helps both things. I only require a very tiny dose, but it makes a huge difference. morgan

psvt, atrial tach, but not "just" a tachycardia. It's getting to the point where nothing surprises me anymore. Heart rates of 29 are okay, 7-8 second pauses are fine, even if very symptomatic and vtach is benign unless it actually kills you, then it's something to be concerned about. So big deal with a rate of 278. I have given up on the whys and what fors with this stuff any more. What does it take for cardiologists to be concerned about arrythmias any more????? Is your EPS scheduled? Are you okay with someone that wishy washy doing it??? Not that it seems there's anything better out there any more. Good grief....morgan

Diz, those type of heart rates got me my pace maker too. It makes a lot of difference. I'm quite shocked at the seemingly cavalier attitude here also. I had it on no beta blockers, but they can exacerbate it. I was dropping like a fly all the time till I got the pacer. They put me on the beta blocker after I got it and now I am paced 95% of the time. So betas don't cause it, but they can and do make it worse. I felt so horrible at 30, I truly thought that was it, now I never have to worry about going below 60. But if I don't take my atenolol, my resting rate can be 130 (tachy-brady like momto). It's that drop in rate that really got me.....good luck, pots or not, this needs to be followed up. morgan

Thanks Amy, we have cut him down to 75 mg as of yesterday. If he takes a compazine, it seems to help. It may well be the sedative properties in it I think. I can see he is having more depression and hate to see him not on anything, but hate to think what would happen mixing it up. I am glad he has his doctor's appt in a couple of days. He is doing better (knock on wood) than when he first started to wean. Going down 37.5 each week. I suppose when we get to the 37.5, we may have to dole out of the capsule. Or go every other day after a week. Although they say the main problem is such a short half life...ayyiyi Scored tablets would sure be nice right now....morgan

I think there are more people here on this board that have been through this crap than haven't. I don't know what to tell you though. I am on disability, in a wheel chair, have a pace maker, have had tests that prove my muscles paralyze, and I am still considered all psychogenic by many doctors. Unless they can prove unequivically you don't have physical ailments, they can't say it's all unequivically psychogenic. However, no one ever needs to prove a psych diagnosis, like they do a physical one. They throw it out there like pebbles and it sticks like super glue. It's no secret that stress exacerbates our symptoms and makes them worse, or that that there is a mind body connection....but stating an absolute is very wrong, when it can't be proved and they offer no help. Der, of course you are stressed and anxious by this, but which came first? It sounds like you are in the UK and I have absolutely no idea how they work over there, but maybe Dr. Mathias can discuss this with the jerks that are making your life even more miserable? Or, at least your work place. I guess I'd start there. So sorry you are going through this sweetie...HoHoHo...yea right. morgan

I thought one interesting thing of note when studying up on POTS. Back in "the olden days" it was called Soldiers heart, or something along those lines, so men were involved in the process of autonomic dysfunction. No one can really deny that diseases that affect far more women than men, will almost always, initially, be chalked up to hysteria, mental disorders, Freudian jealousies, etc. However, it was interesting to note, that even though the percentage of men to women ratios is closer than some things, even men have been historically blown off on this as well. When my mom had a heart attack, she was sent home, after having been told women don't have heart attacks. Didn't even get an EKG. She had SCD a few hours after her appointment. We have a cardiologist where I live that says he had the same belief system until his sister had a fatal heart attack. She was younger than him. Now we see that more women die of cardiac disease than men. MS was not taken seriously until more and more men starting developing it, and so on. However, with autonomic dysfunction, even the men are discounted and I can only believe it's, in large part, because of the symptomology of this disease. It mimics anxiety, panic, and other hystrionic type disorders. Therefore, the men presenting with it are starting to get a taste of what it has felt like to be an ill woman since the stone age. Although men tend to be less forthcomong, by nature, I find it as fascinating as I do sad, that with this disease, we are pretty much on equal standings with most doctors, or for that matter, anyone in the health fields, who have little to no experience with this disease. Which is about 95% of the health care field right now. I can only hope as more men start coming forward and speaking up, more research will be done. In my career, I saw MS go from being hystrionic personalities in women, to a very real disease with positive treatments. We need to make sure the same thing happens with this. There really needs to be more study of the autonomic system in med school, nursing school, the entire health community. There are 4 endocrinologists in my city and not one single one has any idea of what OI is. And they aren't all from here, they are from all over. I actually talked to one of the specialists on the phone and he stated that he didn't even study the autonomic system in school, at all, and most medical schools still don't study it. It's difficult to hold a lack of knowledge against a doctor that was never taught the subject. That's why I think it's vital to find a doctor open to learning after he/she gets out of school. The same goes for nurses and anyone dealing with rare, or complex illnesses. If I reached a point where I wasn't interested in learning any more about the specialty I was working in, I went to a different floor, because I realized I wasn't doing my patients any favors with my apathy. But we shouldn't be out of school before we hear about these things....and more importantly, we shouldn't assume because we haven't heard of it, it can't exist....morganwithherusual2centsworth

I had a lot of event monitors and was in an ER when they saw what I told them. I could feel the dropped beats. Sure enough, I was dropping from 140 to 30. I was falling on my face all the time and told my doctor I was sure it was my heart, because I could FEEL it. I finally ended up in an ER and still got sent home and had to make an appt to get it checked out. He blamed it on beta blockers, which I wasn't taking. I wasn't taking anything at the time. I finally got a pace maker, but to this day he says it was a beta blocker I wasn't on. I am on it now, but my rate won't go below 60. So, I feel all my irregular beats, although they never believe me. The atenolol is for my IST and BP and I know it exacerbates the tachy-brady, but if I wasn't on it, it couldn't cause it. You just keep insisting on those event monitors until they catch it. (the ER did try to get me admitted when they saw the 7 second pauses, but the cardio refused) mine wasn't positional as I remember, but it doesn't matter, if you can't stand up! morgan

It is absolutely essential to maintain some semblence of humor as often as you can Dr. Spacey!!!! Or else you WILL have to fire bomb and it's usually someone that actually does care about you. I speak only for myself and personal experiences, but doubt I am the only one. I have not had a trauma to my back, but I do have a rather large "incidental" hemangioma that causes L3 and L4 to bulge significantly. I have impingement, spurs, and arthritis all the way down my entire spine. I haven't been able to turn my head to the right for about 15 years. I can't help but think this may have a bit of an effect on me and my POTS. I also have Periodic Paralysis with probable Anderson Tawil thrown in for good measure. Which, of course makes my OI worse and muddies the waters. My ANA has been elevated for years and whenever I have abnormal labs, they are blown off as not "far enough" outside the parameters for anyone to deal with. Any tests involving any type of prep have either not been done, or have been done incorrectly. I have had 4 cortisol stim tests, with not one of them being normal, and no follow up. I have recently had venous blood gases done in an ER. Venous. I was tested for seizures as an inpatient and my admit assessment diagnosed conversion, before the electrodes were even applied. We knew I didn't have seizures, but my primary was desperate. The neuro could have just stopped at no seizures, but spent 20 minutes telling me how all my attention seeking was destroying my family and I'd do well to get over myself. Some of the oldies here may remember that dark time for me. I was a nurse for almost 30 years and I well remember the "good old boy" days. They seem to be long gone, with every man for himself. Good and bad, I suppose. However, doctors are still way too insulated at the upper levels. I worked in an office that had a drug dealer for a doctor and when I turned him in, I was in trouble and he got a 12 hour seminar on pain management, he had to pay for...horrors. His practice is still alive and going and I am on disability. So the good old boy does exist in the higher places of judgement, which leaves many of us with poor care at the hands of unsafe practitioners. It was after that particular trauma, I have gone steadily downhill, so I think there are a lot of factors in the causes of or onset of predisposing factors. I live in a rather smal city, so am pretty much a goner as far as care goes. There are many many great doctors out there, however they quickly become overwhelmed by the patients trying to get away from the other kind. I was denied at Vandy, NIH, and Mayo with no explanations. Also at Strong in New York. I have seen so many outstanding doctors that truly care about their patients, but they are like nurses. They burn out faster than the callous ones. Unable to turn down anyone, therefore constantly overwhelmed. I'm not sure what the answers are...the nurses used to have a saying about some doctors (he'd make a great pathologist, as he would never have to deal directly with a patient) and doctors that sacrifice everything to take care of their patients. There has to be a happy medium somewhere, I just am not sure where it is. We have to remember that doctors are human, and like all humans, have faults and make mistakes. I just sometimes think it would bode well for some doctors to admit they are human and don't know everything. Arrogance is just insecurity in disguise. Does anyone else feel like me....I have far more respect for someone that says straight out, I have no idea what's going on and no idea what to do, than the one that becomes an instant psychiatrist? I have said my chart reads like a Stephen King novel as opposed to a physically ill person. I should be a serial something or other at this point....maybe in my next life. Right now I will wait for my testing to get back from Germany....you sound like a good doctor, as is doctorguest, and Karyn. Maybe because you have all seen the dark side of patient care, or maybe because you are just some of those "good guys" still left. We vent about doctors out of frustration, but trust me, we don't all have just crummy ones...it only sounds like it...LOL morgan

Hope the shots help with things. My sister does so much better with them. I got tested and didn't react to a darn thing. morgan

Not sure the ER would be helpful, but it might help with your anxiety about what's going on, better to find out it's something"benign" than to lie there worrying about whether it is. Anytime you have something new that's making you feel this cruddy, it's usually best to get it checked out...good luck sweetie...morgan

I'm glad you found something to help you! Hope it only gets better and better! morgan

Gosh and to think it only took 5 years.... Good luck with your EP and subsequent treatment.....morgan

Anyone willing to listen and work with you can't be bad...In my experience, internal medicine doctors work with typically older patients, and family practice work with everyone. Some people prefer being able to have the whole family go to one person and some prefer their own. After thirty years of nursing, I have found, personally, that there are great doctors in every field and the pits in every field. So it can be six of one and half dozen of another....The most important thing is, you feel comfortable with the person, know you can depend on them, and they will keep an open mind with you! Good luck in your search! morgan

I am on atenolol 25 am and 50 pm. It helps with my tachy and my bp a little bit. My surges where my bp doubles in about 3 minutes are better. The fatigue is no fun however, and I started having tachy-brady syndrome a couple years after my ablation. I wasn't on anything at the time it started, but my cardio insists it's from the atenolol. I'm not sure how something you are not taking can cause something, but there you go. The atenolol did exacerbate it however. Hence the pace maker I have now. I take the atenolol to lower my heart rate when it's way too high and the pacer won't let it dump below 60. But, as I said, the trade off is less horrible surges and a lower heart rate. Good luck with whatever you decide sweetie! (my primary actually thinks the tachy-brady is caused by scar tissue from the ablation, but an electophisiologist may not want to go there) What ever it is, it is better with the pacer. morgan

Thanks for all the input. His primary is seeing him Monday, although it was on the condition that he no longer see the psych person. Jake's last visit with him is today, and boy would I like to go to that meeting....We have discussed this thoroughly and I told Jake he can't be the only person that's been left high and dry by this guy. If he doesn't stand up to to him, he will try and force him to stay on it. Jake is just so passive, he is unable to say no to anyone. He has been taking anti nausea drugs and so far is holding his own at the one drop. He will see his primary before he drops any more. I was reading about the anti anxiety drugs Doctorguest and since Jake already has such a horrible time with this kind of stuff, I am really hoping he will give him something short term, till the effexor is out of his system and he can get started on something different. He even says he is not able to go without anything and that is really the truth. He has been horrifically agoraphobic in the past from anxiety. Benzo's are certainly helpful, but he needs an SSRI for the long term. I appreciate everyone's concern. By the way, this psych and the social worker are the only medical people that don't talk to me about Jake. He has signed releases. They are so fired...... I did let him know he could continue to see him as long as he wishes, but he will be paying the co pays, and as he is unable to work and dependent on us for the little he gets, he has decided not to go anymore. I guess that sounds awful, but what a mess, because they thought they could undo all the "emotional" damage I have done to him his whole life, by making sure he got decent care. (They deduced this in one visit) I want him as independent as possible, but I would rather people didn't try to kill him off without letting me or his primary know.....stillangrymorgan p.s. his pulse has not been under 100 since he started it.....

Welcome Mark! Logic and autonomic dysfunction in the same sentence is an oxymoron, I think. Is that the word??? I had pheo ruled out also and am sure I am hyper. I have IST big time and was talked into ablation in 2003. I now have a pacemaker. He's got a Beemer. I worry and wait for the letter from my insurance that says...hey you are maxed out, when they still can't figure out what's wrong. You will get lots of support and compassion here, I promise...as far as logic, that's out the window with this stuff!!!! I have a lot of autoimmune stuff too, Periodic Paralysis and every psych disorder you can be named with, by every insecure doc I've met. I love your comment (well yea) about anxiety. It's called stuff pumping through your body that's only supposed to do it when you are supposed to be anxious, not just whenever the heck it feels like it.... Anyway, it's nice to get a guy on board. A real man knows when it's time to turn to a lot of women for support.... morgan

Did you know that having very vivid dreams that you can remember the next day, is wrong? It's an indication that you are constantly waking up and having disruptive sleep. You don't wake up enough to remember waking up, but you are. Jake found that out in his testing. It is a sleep disorder, as is being a "night owl" It has a name late sleep phase or something like that. Jake just can not get to sleep before 3-4 AM. That is a sleep disorder, besides his apnea. So, I wrote a note to Dan and mentioned that since I dream all darn night and in vivid colors and complex storylines and can remember them for days, it could quite possibly be a reason for my profound fatigue. No response. We only have one sleep center and 3 doctors who specialize in sleep disorders. 2 of them work with my doctor! Jake sees one of them. This is what I am up against with everything. The pitfalls of living in a city with few specialists. And of going to the same doctor for 23-24 years. My chart looks like a Stephen King novel, so no one else will take me on. There are only two neurology groups and one of the doctors in one diagnosed me with conversion disorder in 15 minutes with no physical exam. So the other group won't see me with out my records and a referral, and when they see that record, they will turn me down. Once a specialist has written me off, my primary doesn't want to talk to anyone else, as it reflects on him. He has been a good doctor, but has reached the point where he is shutting me off completely. I don't think I spelled that right. I have stopped asking for anything at all. I haven't seen him in at least 6 months and my last labs haven't been looked at yet. They are over a month old. Can't send me the results till looked at, haven't gotten them yet. We would have to move to kookamunga and tell them my records were destroyed in a fire, before I felt like I could ever get any one to listen again. But I am so gunshy at this point, I don't even want to try....So I fight for my kid instead.....morgan

little miss fishy I looked at the pics with Jake. He has the third one with the nasal prongs. He takes it off every single night in his sleep and places it very neatly on the bedside table. I think we need to duct tape it to his head at night! The machine he is using right now has variable pressures and he seems to have a lot more problems with taking it off than the one with continuous pressure. He's turning in his chip tomorrow and having them read, to see which machine works best. He said they only had two choices of masks, but I am betting they would order one for him. I am assuming you use the one that looks like a miner's hat? Lois, I am so glad you are getting so much benefit from yours! I really can tell whether Jake has left his on for awhile or not. If asked he realizes it too. Obtuse boy.. Rosie, our closest University hospital is about 6 hours away. I did call them, and they said they would love to see me after I get a referral from my doctor and notes. I swannee, I don't think I would be allowed to use a public restroom here, without Dan's referral.....ikidyounotmorgan

Hi and welcome Kendra! This is a great place to meet people with many things in common, just not the things you'd pick for yourself! I find I almost never have to ask a question about a symptom, because someone else will always ask about it at some point. I hope you find the help and support you need here. ( I know you will) This place was and still is a lifeline for me. I'm also glad it sounds like you have a pretty good support system, that makes a huge difference...just ask anyone that doesn't. Jump right in, the water's nice and warm here and the hearts kind. morgan

Rosie, I can't into a single doctor here without my primary's referral!!! I have preferred insurance and don't need referrals, but the doctors refuse to see me without them...I'm not sure what's up with that, because they make the money...so it's got to be a political thing. If cpap helped with my fatigue, I'd pay out of pocket for it....morgan

I've never heard of any problems, unless you are allergic and that's a whole other thing....

I'm really low, but he doesn't give me anything...what a shocker there....I tried to get a bit more sun this summer, but not sure it helped. morgan

HAhahahahahaha............ morgan

Thanks so much for all your replies and support. He just dreads taking it, because he knows it's going to make him sick, and if he doesn't he's going to get sick. Talk about a rock and a hard place! I actually am slowly weaning him. He's taken it for less than two months...I can't believe the trouble he's having. Anyway, we decided to try 37.5 cuts once a week. He is now taking a 75 and a 37.5. And an anti nausea med we found in the cupboard that he takes for migraines. Hopefully he has learned his lesson and will discuss this with his primary or me in the future. Especially his primary, even though he is being a little on the petulant side, he has been a great doctor for Jake. Thanks again! Oh, I did call around to the local pharmacies, but they would not commit to anything, except stop it slowly. morgan