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morgan617
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Briar I was on betas for a long time, but for some reason they affect my breathing. I wake up at night and have to sit up for awhile. I have tried about every bp med out there. I have never tried any of the typical pots meds. I take the valium for an inner ear disorder, and if I don't I get hours of vertigo to go along with everything else. I only take 5 mgs a day which is a pretty low dose, but it seems to help my ans symptoms, so I guess I'm not one of the people it has adverse affects on. I've been on it 10 years and now am at a lower dose than when I started, so I don't see it as a problem.

Most of the drugs I take just make me feel so much worse and I feel so bad now, I'm just not willing to feel even worse. I take as few meds as possible. Now that my bp has dumped, I'm not sure I want to be on a bunch of meds.

I know I must sound resistant to everything, but I'm not. I'm not going to defend taking a med that helps, and not taking meds that make me worse. Since no one where I live knows squat, it isn't a real confidence booster to have them messing around with drugs. I do appreciate where you're coming from though. I do appreciate every one, a lot. It will just be really interesting to see what is said and done in 2 weeks. The ep doc did mention atenolol again, and I told him I would try it again. So we'll see. I know my tachy is coming back and he says it's not at all uncommon for ans people to have a return of it, the heart will find another accessory pathway. I just don't tolerate it like I used to. I don't tolerate anything like I did pre ablation. So, we'll see. morgan

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Morgan, Morgan, Morgan!

I was so hoping you would get treated well and get more answers. I am so sorry for your experience and that you continue to go downhill. I think it's worth trying the atenolol again if it's been awhile since you last had it. Maybe it will react differently in your system. I would start on a very small dose, though.

Hope you don't have to get another ablation or a pacemaker. I was thinking you already had a pacemaker, for some reason.

Hang in there ... I know I tell you this every time I post, but that's the only thing you can do. Do what makes you feel good and make the best of your time on this earth.

Amy

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Hey Morgan

I'm glad I'm not alone on the side effects of beta blockers, I use to wake up with the same problem sometimes in the morning it would take me up to an hour to get a full breathe. I've been through so many beta blockers and am currently on Kerlone. I spent about a year on Atenolol before I couldn't take that anymore. So as far as beta blockers go I hate how they make you feel tired, unable to breathe and drop your heart rate and blood pressure too low, I like how it stops the tachycardia and arrhythmias.

I take Valium too I've just been warned by the doctor's that it's not good for people that have Dysautonomia/POTS.

You don't sound resistant, you sound tired of waiting for help. And you know the problems of taking medications. I'm the same way, I get tired of feeling like a guinea pig.

Hang in there Morgan, we're pulling for you.

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Hi Morgan:

I do not think we have met. I am fairly new, and most of you know a lot more than I do, but do you ever think about going back to the basics?--I do not know what some of the things are you have, but when all else fails--trying liquids again? try some sort of exercise-even if only lifting small weights? salt? beta blocker? even a D.O. that does GENTLE -just light massage on your neck in areas that ANS could be affected? I mean-when all else fails and these things would not hurt you, maybe it could help? It is so different for me for the breathing-I could not breathe until I took the bb. My muscle problems were being caused by something the beta blocker corrected. Anyway, I am sorry you have such a hard time. JenniferTX

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Hi Jennifer, when you first came on, I was on a short sabbitical. That's a tactful way of saying big old pity party. It's nice to meet you.

I can not use salt as it increases my attacks of vertigo from an inner ear disorder and I used to have very consistant malignant hypertension. It never came down. Now it's everywhere, but that still leaves my inner ears.

I drink a lot of water, a little gatorade. I was actually doing a recumbent bike 4 miles a day, slowly, but consistantly, till these last episodes started.

I get a massage every other Sunday after payday. It is just about the only thing I can really look forward to. AHHHH just the thought that I get one this next week is like heaven.

I told the new eps I would try bb's again, but I hate that breathing thing. I get it now when my potassium is low too. It's gross. It's the closest feeling I have to anxiety I think, and it's so annoying too. I think I may get a treadmill too, oh boy.

So you can see I'm pretty much at the basics. But I appreciate your input. I just live in an area of the states where they have absolutely nothing to offer people like us, and that's what I deal with.

I am seeing my therapist tomorrow so she can decide if I have conversion disorder or not. She will be honest and she knows me better than anyone on the face of this earth. I refuse to believe it from the cracker that saw me in hospital, but will listen to her, no matter how much I don't want to hear it. I do not believe I am a nut ball, but if I am, I want off this merry go round. morgan

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Morgan,

Just in case this helps you...I too have had horrible issues with beta blockers and having asthma attacks with them. In addition, they seem to cause my body to go to the other exteme of really low BP and heart rate.

To make a long story short, I had a Dr who was working really hard to find something for me. After hearing how sensitive my body is and how it seems to want to reject everything new he decided (& I agreed) to try a infant dose of Metoprolol Titrate. I started out taking 1 cc (which was the equivalent of 1 mg) every 4 hours. I've worked my way up to 2cc's (2mg) every 6 hours. I sometimes skip the last dose of the day if my heart rate is low because I know going to bed it will be lower. My regular cardiologist did not even know this drug could be written this way (in a liquid small dose) but he was willing to write the prescription just as the hospital had given it to me. MANY Dr's have said this would never work in an adult because the dose is "too small" but it is helping me. It doesn't give me the exact control of heart rate and BP that I want but it definately helps and it doesn't give me the asthma or shortness of breath I was having before.

I'm now trying a pediatric dose of Pamelor for nerve pain and slowly increasing the cc's by 1/2 at a time to see if that give me any relief. So far it's helping and no side effects.

Time will tell but it looks like maybe if I take true infant doses that my body actually responds okay (most adults would get no benefit from them at the doses I'm taking). It's been a little difficult at times getting Dr's to hear this but the ones who've seen me the most and seen my decline are willing to work with me and are pleasantly surprised. They don't understand but they seem more than happy to write a prescription that will help.

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Morgan, Sorry to hear all of the problems you are having with the condition. I can relate. Was on Toprol, dropped my heart rate to 40 at all times, left me bed-ridden...so stopped that one. Spent 9 months on the atenolol, but my blood pressure continued to drop and my heart rate increase by 30 everytime I stood, I also had worsening of anxiety depression after awhile on this med. (possibly due to my heart racing all of the time.) So they switched me now to adenolol. I instantly noticed my anxiety depression were gone. Bp Hr are somewhat better, but the nadolol making me tired is an understatement. It has further reduced my already reduced level of functioning. I do like that the anxiety and depression stopped and that my heart doesnt race all of the time. I don't want to go back on atenolol. However, the nadolol is definately worsening my asthma symptoms. I hope we both find better control of our symptoms. Take Care!

Like Poohbear my body has rejected many medications...I have had sensitivities to over a dozen now...an antibitotic, beta blockers, and ssri's.

I am not on valium, but taking clonazepam. This helps while its in my system, but as soon as it wears off, I have tachycardia. I wonder if the valium, or ativan would work better for me sometimes...I wonder if the clonazepam is making things worse or helping...it's all so confusing.

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I too live where there is not a lot of help. I also went into the hospital only to be told everything is neg. It is really hard. You have every symptom and every neg test-so they just say you are fine. Lucky I had a cardio who stuck by me even though he had no idea what was wrong. Plus I did not even have the tachy problem since they kept me on a drip!! That was starting to get to me as I did not realize that fluids would "correct" that temp for me. I was starting to think -geeze I am crazy. But then I realized that is what it was plus I ws on bedrest. All of my chlet what ever that word is they test for with the 24 urine test were done while I was on ivs, and I wonder if they were invalid since I was getting so much fluid. I am sorry you are having so much trouble. If one doctor does not work-get another!! That is my new motto! Really though, do not give up--they are out there. Can you travel to find better ones? Take care, JenniferTX

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Corina, yes a cracker is supposed to be funny. You are funny, but you are definitely not a cracker! :lol: I think of a cracker as a simpleton type person, no substenance, like a cracker. Does that make sense?

Faith, valium has a very long half life, so it tends to wear off more gradually, not the cliff jump some of the others have. That may be your problem. I know there is quite a bit of controversy about benzos, but I have taken the stand that if it helps, I'm going to do it and I don't care how anyone feels about it. I believe there a many people people on this board that use them occasionally or on a regular basis and I say, if you need it do what ever works for you. Some people don't tolerate them, just like most of us vary on any other drug we take and it's effectiveness or side effects.

I was taking 9 mgs a day 2 mg 3 times and 3 mg at bedtime, but thought I could lower the dose. So I dropped a mg a week till I got to 5 mg a day and that seems to be my lowest possible dose that still helps. So I cut the dose about in half. 1 mg is a very low dose, but not surprising, since most of us take tiny doses of everything else.

When I had to go to the er a month or so ago, they only had 5 mg tablets and I said I couldn't take that big a dose, I could hear them out at the desk talking about how to divide a 5 mg into a 1 mg and no one had ever heard of anyone taking such a low dose and it would be easier if I just took a bigger dose. My husband and I were a bit tickled by that, because people are usually saying the opposite. They finally came in with this itty bitty chip of a pill and she said, man that was the best she could do. I have no idea what the dose was I took and neither did she, but it seemed to work. :lol:

Well, I didn't mean to rattle on. My whole point here is of all the benzos, valium has the longest half life and the gentlest wearing off symptoms. You can obviously also take tiny doses and get relief from it. I have never developed a tolerance and in fact like I said lowered the dose by almost half with absolutely no problems. You just do it slowly like everything else. I hope that helps. talksalotmorgan

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Morgan,

From what I read about conversion disorder on emedicine.com, a person with it usually has an indifference regarding the symptoms -- kind of an I-don't-care attitude -- and dismisses them to some extent. That does not sound like you, since you actually are trying to get better. Also, the symptoms tend to be neurological -- like seizures (which have really only occurred a couple times for you and were not your major complaint), motor and sensory disturbances (numbness, gait problems, etc.). The disorder also is estimated to occur in 15-22 of every 100,000 people -- very rare -- and even less often in adults older than 35.

Just an FYI. Here's a link, although you do have to register (it's free and noninvasive): http://www.emedicine.com/emerg/topic112.htm

This is a good site for all different kinds of diseases as well.

Amy

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faith, you are very welcome.

Well I went to see the therapist and told her everything that happens and what happened, and all she could say was WHAT???? She has never heard of any psych disorder where someone could actually change their vital signs and physical signs to any great degree, let alone those degrees. She said I have no personality disorders and she will let anyone I wish know what she thinks. She was appalled by the psycho shrink's behavior and laughed when I told her about the 123 thing. She did agree though that unfortunately his report will color other doctors I see, even if she disagrees, but she will. So I feel better. maybenotsocrazymorgan

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