morgan617

I have terrible spasms. There's a med called Levsin that can help with them, but if you have reflux, it can make it worse. If you get angioedema, an allergic reaction, it can cause considerable pain in your esophagus and it would make sense that benadryl would help. That tends to be a constant pain as opposed to spasms. I've had that once and it was really horrible. I also had huge hives at the same time. It is the one and only time I have ever had hives and we never figured out what caused them. morgan

Sometimes I am so exhausted I wonder if my chest is going to move when I try to breathe! Any chronic illness causes fatigue and depression is very common also. I have always assumed I have a touch of both, or a lot of one and a little of the other, depending on what else is going on. I haven't been able to exercise in literally years. if I can manage one load of laundry and feeding my dogs, I call that a good day. My doc said I have an 84 year old body, so it's funny, not haha, that you would say that. Sometimes I think the fatigue is the most debilitating part of any of my illnesses. So don't feel like the lone rangeress sweetie, we are all there with ya! morgan

Did they do the daytime sleep study on you? There are really specific criteria you have to meet in these studies to have narcolepsy. My hubs was diagnosed about 15 years ago with a severe level of narco and has been on Ritalin forever. He failed every aspect of the sleep study. He falls asleep within 5 minutes of sitting and doing nothing, regardless of whether he's taken his meds or not. The weird thing is, he doesn't have ANY cataplexy at all! He doesn't realize he's fallen asleep till he wakes up and says something stupid he was dreaming about...LOL But he has never collapsed when laughing, or stressed, or for any reason. If he is anxious or stressed, he just can't stay awake. I am the limp rag and I don't have it. Narcoplepsy is weird like everything else, some people have some of the symptoms and some have all and some hardly any, even when it's severe. I had the night time/day time study done in December and even though I fell asleep, I did not enter rem sleep in any of my naps. Hubs average time to fall asleep in 5 sets spaced 2 hours apart was about 30 seconds and he went straight to rem every time. Unequivocal. I'm not trying to negate anything you have to say about your diagnosis and the fact you had a sleep study is good, but at the beginning it sort of sounded like he had diagnosed you without a sleep study and I can't imagine that happening. I would say congrats, but narco sure isn't any fun either! But it is nice to have the validation and it is sure not my intention to take anything away from that. I think Dave is kind of weird, because his doctors are a bit flummoxed by the fact his is so severe, but he has zero cataplexy with it. Maybe POTS contributes a large degree to the degree of cataplexy. So many more questions than answers. Anyway...I hope they are able to find a good med for you, they have so many more choices than they used to and hopefully less side effects than ritilin would if you have tachy problems. Good luck and so glad you found a keeper doctor! That's always a good thing to hear! morgan

Hey Dayna, I remember you sweetie! Congrats on getting your disability! I got mine on first try, but have been really fighting over Jake's, so understand from that end. Haven't seen you in awhile, but then I'm not here much either. So many new people is right! But good we all have a place to go. morgan

I get it when my BP is really jetting up at an alarming rate, but I also have a small flush going on all the time. Sometimes it actually turns a bluish gray color, that really wigs out my boys. I do know it's much worse during attacks. morgan

Tommy, if she has NO income, SSDI has programs to help till you hear. It's a sucky amount, but better than nothing, has she checked into that? Also, she should at least qualify for Medicaid. Food stamps. My son is on a program called GAU through our states DSHS program. It supplies food stamps, 336 dollars a month and Medicaid. The amounts are different for each state, but all he had to do was verify he was appealing for SSDI. Have her call her local DSHS office and make an appointment. Good luck! morgan

I just feel bad pretty much all the time, no matter what my vital signs say. It only gets worse when things are out of whack. morgan

I take both a benzo and a beta too, I am fatigued all the time, but don't think it's med related. I become unresponsive too, but am alert, but it's a whole different problem, although scary as heck. it also doesn't have anything to do with the meds, but potassium levels in my cells. We are all different and you just won't know till you try. Klonipin has a long half life, so if you took it at bedtime, it should still be helpful during the day. Good luck with whatever you decide. morgan

I was the same way, couldn't wait to get my hands in the earth and work and then just enjoy it all. Last year my daughter in law planted for me while I watched. Although I appreciated it so much, it was so sad that I didn't do it. We are moving in April and I suppose she will plant for me again at the new place. I am working on appredciating the fact that someone cares enough to do it for me, because I love flowers and summer more than anything. But there will always be a part of me that is so sad about this. Sending hugs and total understanding your way sweetie! morgan

I've only had one in 54 years, so not a problem for me. I don't even get them when on antibiotics. Make sure your blood sugars are ok, if they run high, you can have a much higher tendency for them. morgan

I'm really sorry Angela, what a blow. This disease just sometimes seems like it's going to take everything, one thing at a time. I finally decided a few years ago to stop renewing my nursing license and it was truly one of the hardest things I have ever done, no matter that I would never work in nursing again. But you will adapt, just like we do to everything. Think of this as an opportunity to rest and think about you, just like you said. We have to grieve these losses and then concentrate on the things we can do. You will be in my thoughts sweetie. morgan

I paralyze and can't function for days. I have had 3 P.T.'s now that are shocked at my inability to tolerate exercise. And they don't think I'm faking it...oh to have more doctors like there are P.T.'s....morgan

Rene, I think we all kind of go through stages where we do this, get overly concerned about this stuff, and besides, it makes us feel gross. I can't even remember the last time I checked my BP, because I can tell by how I feel where it's at. You need to remember that POTS is the dysregulation of these things, so they are going to be weird. If this disease continues to plague you (hopefully you will get much better, I don't know your history) you will become accustomed to these things and they won't wig you out so much, you just learn to adapt. Not a real encouraging statement, but true. morgan

Hi Rob, May I ask if the zyprexa is for your OCD? I have never heard of antipsychotics being used for OCD or depression. I have really severe OCD and unfortunately don't tolerate meds, so just have to deal with it, but anti psychotics are a pretty major drug to be given for it. I took anafranil for a awhile, which was like a miracle drug for me, but it does cause increased heart rate so it didn't last. When you talk about the empty feeling, is it like cold, or a fog, or you just feel like a robot emotion wise? Antipsychotics are notorious for causing people to just feel nothing and that's usually why there is such a high rate of non compliance. Sorry to be so nosy, but I didn't see anything in the diagnoses you mentioned that require these type of drugs. However, if they work well for you otherwise, you might discuss an alternative dosing, say, taking one every other day or skipping every third day or what ever, with your doctor. As far as SSRI's my son has been on about 4 different ones now, the only one he has ever had problems with was effexor. That was miserable for him. he's been on paxil, celexa, and is now on lexapro, which seems to be the best one so far for him. He weans off the old ones quickly while starting the new one. They are all in the same class of drug, but for some reason, one just may work much better than another. I totally understand your reluctance to play with meds, I am so sensitive to everything, I am on pediatric doses of everything except potassium. Soory if I sound like the spanish inquisition here, but as one OCD'er to another, the drugs you discuss were never in any conversations for it with me. morgan

I saw a doctor that thinks I have something called (hopefully can spell it) erythromelalgia. That's wrong, but if you google, it should crrect it. The capillaries constrict inappropriately and then suddenly relax and you get a rush of core blood so it feels very hot. I have it in my palms and the soles of my feet. it's miserable. I also have raynaud's. The best they can offer is keep your hands and feet at a fairly constant temp (uh huh) and never put them in hot water to try and warm them up, as it causes even more damage. morgan

Jumping in here late, but the same thing happened with my brother, except he was talking about his wife's neice and how she had this disease called POTS and he could just cry for her, she had such a struggle, etc...you get my point. I was flabbergasted when he said, could you imagine having a life this hard. I said, "why yes I could, since I TOO have it and have forever and you know it." He was a bit taken aback and then said, well she must have it a lot worse than you, because.......you look so good!!!!! Those oh so famous words. I guess i just realized some people are never going to get it. We never discuss my health, I refuse. But sure know where you are coming from. And am sorry. morgan

I have had to do this twice and I guess it's the only time I've been lucky. Both times, even though they worked for the other side, I got very sympathetic people. I never had to see a doctor, just psychs. maybe that's what saved me, they just wrote I was crazy and that gets you passed...LOL. good luck ernie. morgan

I've been on valium, the same dose, daily for 15 years or so now. I have never developed a tolerance or had to increase the dose, yet. I take 6-8 mg a day. The dosage is different than klonipin, so trust me, it's a low dose. The norm is 5-10 mg 4-5 times a day. I am very sensitive to meds also. I totally agree with jennifer, there is a stigma about benzos, but man, there is so little that does help us, I'm not going to pass up something that actually helps. The weird thing is, I was put on it for an inner ear disorder and realized it helped with my adrenaline surges too. If i stopped it, I'd have to wean off very slowly, but only because I've on it forever. However, I have no intention of stopping something that helps so many of my symptoms. I stay very clear headed on it. I get foggy brain for other reasons. My primary said if he gets a bad reputation, so be it, he's happy to be my "dealer" since he has so few things he can do to help me. Since it's a pediatric dose, we usually get a laugh out of it and he says taking a benzo is the least of my problems. I agree. I hope it helps sweetie. morgan

The last time I saw my primary, about 6 months ago, I was telling him for the millionth time I was sick of feeling guilty for feeling sick. I was lying in an ER while the staff stood outside my curtain, to make sure my hubby and I could hear them, make fun of my apparent "psychotic break." The doctor told me I was the most anxious person she had ever had in her ER. I never called them once, we didn't let them know when I was having problems, I wasn't hysterical, I had to get my pace maker adjusted, and felt better, but even the pacer tech was in on it. After admitting I was having zillions of arrythmias. It was so humiliating, I wanted to find a sharp object and let them know how I really felt. Trust me, it wasn't "anxious." According to them I was the reason ativan was invented. My primary schooched his chair close to me and got right in my face and said..."I wish they had to walk a mile in your panties sweetheart." Talk about validating. he said we are so past psych stuff at this point. We do not owe anyone apologies for any way we feel, whether it's sick or anxious and no one, I mean no one has the right to disrespect you no matter what they think or feel. My hubs says the more I try to defend myself, the worse they get. So, I just don't say anything anymore. I won't give them the satisfaction. I had to go see the cardio after that for a follow up and I did tell him that neither he, his staff, nor his pacer techs had the right to embarrass or humiliate people for things they couldn't even begin to comprehend and the day would come when they would be the vulnerable ones lying there in a crappy gown on a rock hard stretcher, wondering what was going on, while being ignored, and I hoped they were treated better than they treat their patients. His faced turned red and he actually apologized. I have no idea if he was sincere, but I do know he at least got my point. But that's just my jaded self. It's like having a baby sweetie. Until you've gone through labor, you will never get how it feels. But it doesn't mean you have the right to lack any empathy for their pain. That's how many of these people are. And I guess their day will come and I do hope they are shown more compassion than most of us have been. You have to do whatever you feel you need to with your cardio, but you shouldn't have to explain "fight or flight." That's MD 101. Whatever you decide, I hope it goes well. morgan

Ricky and Michelle, I'm glad you are home from the hospital. I just wanted to chime in here about pacers and ablation. I had ablation in 2003, done by a doctor who knew nothing about POTS and I never worked again. I have been homebound for many years now. EPS and ablation is never anything to be taken lightly unless you have specific rhythms that ablation has a long history of actually helping. There are arrythmias that ablation can actually cure, but POTS is not one of them. I am on my third EP and he says he would never do ablation on a POTS person. I wish I had met him first, even though I just called him a dunderhead in a previous post. I also have a pacemaker. pacemakers will not help a fast heart rate. I know they are experimenting with pacers that slow the heart down, but I would be very leery of them. They are meant to SPEED up a heart that's beating too slow, not the other way around. There are devices that look like pacers that shock the heart, but that is for vtach, and i wouldn't want one for tachycardia and have it firing uneccessarily. My rate drops into the 20's and that is why I have one. Like Pooh, it helped my syncope, but that's all it does, it doesn't help when my heart races, or I have any other symptoms of anything kind. It just prevents my rate from dropping below 70. It will record fast rates, but that's all it does. I never took any of the meds Michele has had to, as my BP was always way too high. No salt, caffeine, stockings, or meds. I concur wholeheartedly with pooh bear (hey there sweetie!) that it would be in your best interest to see the specialists she mentions if at all possible. I live all the way across the states and there is no one here and I have cost prohibitions, but in 2003, I would have given anything to have seen one of these doctors before I had the ablation. You are a good husband. I have one too, although at this point, he is as tired of this as me. make sure you take care of you too, this doesn't just affect her, it affects everyone around her too. Good luck! morgan

Hormones can mess with everything. If they took you off it, did they ever put you back on an hrt? I have been on estradiol for years, and feel absolutely awful when it's stopped for any reason. I'm hyperadrenergic too, really high BP's, although over the last couple of years my BP has dumped to really low measurements, but they can be all over the place, and my pulse can go from 140 or so to 25 in just a few beats. I didn't tolerate that at all and now have a pacer. I kind of feel like maybe I'm developing a vagotonia type thing, but who knows. Betas are a crap shoot, the only one I tolerate, and believe me I've tried them all, is atenolol. If I don't take it my pulse is always above 100 but will drop to 25. if I do take it, it helps control the fast rate, but makes the slow rate worse. So, I had to get the pacer to take the med. Our bodies are just whacked. I should say here that I had my heart ablated in 2003 and my primary feels that it damaged my sinus node causing the rhythm problems I have now. If you did well on the hrt and had no problems, I'd suggest you call the doctor that prescribes them and tell him you need to restart them. I have a fair amount of vtach and I don't always feel it and my ep is a dunderhead too. He said we could address it when it became "lethal" I swear to God, he said that. The only reason he sees me now is because he put the pacer in and HAS to see me. He says I certainly have autonomic problems, but he doesn't "do autonomic." I am on a sabbatical from doctors at present, and haven't seen one in about 6 months. It's not for everyone, but it feels great to me, I think they stress me out more than any of my illnesses. I hope you can get back on track soon and being back on hormones helps with things. Good luck sweetie..morgan

Ernie, I just went in and told the truth. You will either get someone sympathetic or not, but your files don't lie, and they can't really avoid those. The first time, I wasn't even using a wheel chair, the second time I was, so it was clear I had certainly not improved. I don't know how it works in Canada, but I just thought, I will answer everything truthfully and I breezed right through. Good luck sweetie! morgan

I've had 2 sleep studies now. I have virtually no stage 3 or 4 sleep, which is the restorative. Every single thing was abnormal except I don't have apnea. The first result was reported as normal and the second as no stage 3-4, but no hypersomnia, although i fell asleep at all the 2 hour intervals, but like you did not have REM. I just gave up. morgan

I believe delsym is a safe one, but I'd ask the pharmacist at your drug store. Feel better soon sweetie! morgan

Sodium is not your friend if you have hypertension. I have never used it for my POTS. I have hypertension and an inner ear disease, and decided low salt was better than what the salt would do. I despise the taste of salt anyway, so no big deal for me, but many on here are very dependent on it. I'm not sure what the answers is, except it seems most of the people who take the large amounts of sodium do not have hypertension. The answers are never easy are they? morgan