Benzodiazepams

[danelle]

Hi, I am doing this poll because I am trying to find the best treatment for my son. I know what does and doesn't work for me, but I feel that there are a lot of POTS patients on benzos for different reasons. I know this is a controversial area and I am reluctant to let my son take them for many reasons-mainly the addiction properties. BUT at the same time, is it really any different than someone taking meds for their BP, heart, kidneys, diabetes, etc because they HAVE to have it?

I just want what is best for him and what will work to give him as close to a normal life as he can have.

Just a little history: He does have anxiety and panic attacks, that have increased lately. We have tried buspar which has made him so dizzy that he can't even walk. He is on Zoloft but hte doctor is trying to switch him to celexa. He is having a lot of nausea, diarrhea, and headaches with this switchover. He is also on Toprol XL for high BP and high HR. If you want, you can read my previous post, I will pull it back up and post a note so you can see it with this poll. Thanks for everyone's input!!!

[janineerrn]

Im sorry your son (and your family) has to go through this. Have you tried him on lexapro as an antidepressant. It has the least amount of side effects and I recently read some research stating that lexapro will help with nerve conduction (which could be a part of POTS)

I take Klonopin twice a day. It helps keep me calm. I take valium when I need it. It keeps me from running to the ER when my symptoms get bad (I swear Im having a heart attack).

I dont think you need to worry about the addiction part. Just keep him off of xanax, being an ER nurse, I have seen some pretty bad psychosis associated with withdrawal of xanax. I have also seen it with Ativan, but not from withdrawal, from actually taking it long term. But whatever benzo you put him on just watch out for symptoms of over medication and when he comes off of them taper the dosage and dont change anything without talking to his doctor. and I pray you have a wonderful doctor.

God Bless

Janine

[danelle]

Janine, thanks for the input. I personally take klonopin too and have for years. I had been taking 0.5mg TID but recently increased it due to major stressors. IT also keeps me out of the ER but I do find that it doesn't take the anxiety completely away unless I take so much it just knocks me out and I don't like that. I haven't had a visit with my GP since I increased my klonopin but will discuss it with her. My cardio, who knows about POTS, does NOT like klonopin and he wants to eventually take me off of it and put me on buspar-which I am going to refuse, i think at this point. I don't think I couldl make it without my klonopin due to my anxiety and panic. So I am not sure where we are going to go with that. He is the same dr that treats my son. He doesn't want him to have benzos-which was my original suggestion-NOT to put him on benzos but he put him on ativan anyway (for about 2 weeks) then took it away and put him on the buspar-which I took him off of myself last night because of the side effects(I am an RN too ). ANyway, I am glad you told me about the ativan because our cardio prefers it over the clonazepam. Do you have any suggestions on how we can bring this up delicately? I know he has talked to Dr Grubb about us(I saw himonce) and he recommended this therapy for Derrick BUT I also have read many things were he recommends benzos?! What do you think? Also, did you read JB's post about dying from dysautonomia? Have you ever seen a pt die from the arrythmias caused by it? I am scared!!! More than normal!!

Thanks for your reply, it's nice to talk to other fellow nurses here-well, it's nice to talk to EVERYONE here, all of us POTSY people!LOL

[janineerrn]

I have seen many people die of dysrhythmias. Dont know if they are POTS related or not. Thats one of my big concerns. I am going to request that my cardio specialist, when I go see her for the first time May 16, that she give me an event monitor to wear. Not a Holter monitor but an event monitor so I press a button when I feel a dysrhythmia and I call a number and transmit and they tell me right then if I need to go to the ER.

It is very plausable to assume that you can die if your heart goes wacko POTS related or not. Dont want to freak anyone out, sorry but its the truth.

My concern has always been, am I going to die, during an "attack". Not from a illogical Im panicing because of adrenalin stand point but from a logical nurses stand point. I always tell my patients to go to the er immediately if you have cardiac symptoms, time is muscle. And here I am having all the symptoms of a major MI and I know Im having dysrhythmias and Im not doing anything but knocking myself out with a valium and praying I wake up.

This Totally *****

Janine

[morgan617]

Don't care about "stigmas" I haven't changed my dose since 1997. They make me feel better and I don't care how anyone feels about it. My doctor is also sick and tired of others questioning something of the few things that do seem to help. They are not for everyone. As is everything on this earth not for everyone. But they are the only drug I can take that helps my meneires and my OI. I take 2mgs of valium. morgan

[danelle]

Janine, I personally emailed you. THanks for the info.

Morgan, thanks for your input, I couldn't agree with you more!!!

[dizzy]

Klonopin 0.5mg every morning helps lessen my dizzyness. Ocassionally I take 0.5mg in the evening. I have less dizziness if I take 2 a day - but because of the addiction potential I tried to stick to just 1 a day.

I'm considering going to 2 a day everyday because I would be able to be much more functionable. I would rather be able to enjoy life more !! I have gone off of it several times to see how I would do. No problems with stopping it, other than my dizziness gets so bad I am back in bed nearly 24 hours a day.

[Miriam Poorman-Knox]

P

[JLB]

I can't get any help for my heart rhythm problems. For any of my problems.

So what you're saying is, I'm right to fear sudden death, because that's where I'm headed. I get worse all the time, it's definitely progressing, and I'm going to die suddenly.

What's the point in living this way, then? the only hope or comfort I had was the "fact" that the heart reregulates itself, and people don't die from this. That's gone now.

What's the use.

[JLB]

You know, they started dxing me with "anxiety" 15 years ago, and those records follow me everywhere. I have no "treatment plan" to follow, except self-help, which doesn't help anymore.

It's so unfair.

I felt a bit better today. I wish I hadn't read this. I'm terrified.

[yogini]

Miriam,

Can you please clarify your post? Do you mean that 2 patients died because they stopped their beta blockers abruptly? Because, unless you have another heart problem, I think it should be safe to do it as long as you follow the doctor's instructions and taper it off gradually. I am a bit sensitive about this topic, because I am in the process of trying to reduce and/or stop my beta blocker.

JLB and Janine, I have read repeatedly and been told by several doctors that POTS in and of itself is NOT life-threatening.

-Rita

[JLB]

Rita, what did they tell you about it?

I can't believe this - my whole system is starting to go crazy, my heart is going nuts again... I can't go on like this. Am I just waiting to die here?

[Miriam Poorman-Knox]

JLB,

Take a breath. The point is that in order to treat this syndrome their is some trial and error with medications. There is also some controversy as to wether this is cardiac or neurological. I am sure it is both. The heart has to pump the extra blood that is pooling in the lower body. The point my doctor made is that this is a syndrome and that the one area that is most important to be a ware of is keeping the blood pumping. JLB, it seems that you have alot of anxiety right now, perhaps it would be a good idea to speak with someone, who can know all about you. As for others trying to stop meds completely, as long as your docs ok it. The posts here have seemed to prove that one can go off meds for a short period of time and then crash. This is all to be discussed with your health care provider.

It does take tie to get the correct meds, fearing you will drop dead perhaps is getting ahead of yourself. There are lots of treatments. Hope this helps

POTS isn't life threatening, as a rule. Depending on YOUR PERSOnAL symptoms ets, pre existing medical problems. FOLLOW YOUR DOCtORs advice. But yes these 2 people didn't make it. They stopped their meds abruptly without drs knowledge!!!!!!!!!!!!!

Miriam

[morgan617]

JLB, I have been having severe arrythmias for 20 years!!! I mean PAC"S runs of V tach, you name it. I have been on every kind of bp and beta there is. I don't take anything now. MY mom died of sudden cardiac death in her 40's. I am 50. So even with decades of arrythmias under my belt and a horrible family history, I'm still kicking!!! NO med should be stopped without a doctors okay and or supervision. Beta blockers just need to be weaned a little, like lots of drugs. I know arrythmias are very anxiety provoking, but think about it. There's not one person in the world that doesn't have them. There are just people that don't feel them. When you think your heart beats about 100 kazillion times in your life, you can't expect every beat to be perfect. I have taken care of people walking around having these looong runs of vtach or these realllly long pauses and they don't even know it. It is just found incidentally. Pac's which are what most of us deal with, are NOT life threatning. They are extremely common. I took a drug once that made my pulse 280 for over 4 hours non stop. That was not fun, it was also ten years ago, and here I still am. I can't tell you or force you not to be anxious, but I can tell you EVERYONE has arrythmias at one time or another, and some of us have lots more than others. But the types of arrythmias we suffer, do not tend to be lethal. There would have to be so many other factors involved. So please try and stop worrying just a little, as that only aggravates a not fun thing. And don't sit around waiting to die! We are all so miserable most of the time, I'm sure we'll all live to be the oldest people in existance!!! morgan

[yogini]

JLB, you may want to do a search on the forum on this topic. This has been discussed before, and others who are more experienced than me seem to think that POTS can be severely disabling, but is not generally life-threatening. Have you had a full heart work-up? (echocardiogram, etc). Because this really helped to ease my mind. Also, here is a great article that EarthMother posted a few weeks ago regarding arrythmias. It has really helped me to deal with them, and hope it helps you.

http://www.toppup.com/htdocs/dcforum/DCForumID1/357.html

I agree that it might help you to see someone who is more familiar with your circumstances. There are some knowledgable people on this site, but it is better to get advice from an dr and/or a counselor who can see you in person. Hang in there.

[JLB]

JLB,

  Take a breath.  The point is that in order to treat this syndrome their is some trial and error with medications.  There is also some controversy as to wether this is cardiac or neurological.  I am sure it is both.  The heart has to pump the extra blood that is pooling in the lower body.  The point my doctor made is that this is a syndrome and that the one area that is most important to be a ware of is keeping the blood pumping.  JLB, it seems that you have alot of anxiety right now, perhaps it would be a good idea to speak with someone, who can know all about you.  As for others trying to stop meds completely, as long as your docs ok it.  The posts here have seemed to prove that one can go off meds for a short period of time and then crash.  This is all to be discussed with your health care provider.

It does take tie to get the correct meds, fearing you will drop dead perhaps is getting ahead of yourself.  There are lots of treatments.  Hope this helps

POTS isn't life threatening, as a rule.  Depending on YOUR PERSOnAL symptoms ets, pre existing medical problems.  FOLLOW YOUR DOCtORs advice. But yes these 2 people didn't make it.  They stopped their meds abruptly without drs knowledge!!!!!!!!!!!!!

 

                                    Miriam

<{POST_SNAPBACK}>

The point is, I can't get a dr. to do any more than pat me on the head and say, "See a shrink." I've done that. more than once. they find no problems with any personality disorders or excessive anxiety - they say my anxiety is due to an untreated medical condition. Because of my records, I can't get an MD to look any closer, and I've taken in facts, documents, and even advocates.

I thought people here understood the difficulty with getting medical help. I'm embarrassed now.

And I can't get a deep breath - that's one of my new symptoms in recent weeks.

[morgan617]

Trust me, we've ALL had horrible experiences with doctors. Did you read my post from last week end, I had a TIA and a seizure and got diagnosed with a panic attack! The problem with breathing is very common too . It's called sighing hyperventilation and there was just a thread on it recently. I've felt like my ribs are breaking, get light headed and felt absolutely crummy. Trust me, WE DO UNDERSTAND. MOst of us have been through countless doctors and too many tests to count.. Do not be embarrassed ok. We are trying to reassure you, and apparently failing....

If your primary works with you, you don't need a specialist to get a monitor or an echo. He/she is perfectly capable of ordering one for you. I get mine done at a local hospital, they are read by a cardiologist I never see and sent to my primary. Can you do that? Will your primary work with you on this?

And what everyone says is true. My mom died of sudden cardiac death, but her primary underlying cause was coronary artery disease. It was caused by something secondary and NEVER believe every report you see. Take everything with a grain of salt, because this disease is different for everyone. There is way too much stuff floating around out there, just to scare the bejeebers out of us. People do have reactions to beta blockers, but there is someone somewhere who's had a reaction to every drug ever invented.

No one here wants you to think we just think you should sit there and have arrythmias till you drop dead. It's just that a lot of us have had the same kinds of arrythmias for a very long time and our hearts are still pumping away. I've had many days where I've had more arrythmias than normal beats. It's not fun, but here I still am. As is everyone else. I have been on this site and others for awhile and haven't heard of a single person dying from pots. Or the arrythmias associated with it. Note the article apparently said it was from abruptly stopping meds without the supervision of a doctor. It was probably written for non compliant people who like to play with their meds, by very frustrated people that have to deal with them.

Again

, we care about you very much, but I think at this point you are very upset and may not see what we are writing for what it is. Understanding of your fears, frustrations and this sucky disease. We all vent here, we all say we get fightened, frustrated, angry and sad. If you have ONE doctor that listens to you, that doctor can order the tests you need to reassure you. Please don't give up and hang in there. morgan

[Guest Julia59]

JLB,

I don't know if this will help, but I was once where you are now. I was terrified and I truly, truly felt I could not go on. I did not want to live with the terrifying symptoms I was having, but do you know what----it passed.

After they checked my heart out to make sure it was structurally sound I felt better. I was still scared, but I got over it. Sometimes this can happen often with slow gut motility as excess upper bowel contents can push up into the diaphram thus aggravating the vagus nerve causing the heart to go crazy--or flip flop a bit.

I notice when things are moving better in my gut I don't really get them as much.

All kinds of things can make your heart irregular or cause palpitations---even hormone changes. POTS screws with a lot of things in your body, and if POTS doesn't screw with you heart directly, it can indirectly screw with your heart by interrupting the normal flow of things in your body------one thing in particular, your blood flow.

Once you get a few things ruled out with your heart, you can just chalk these things up to the wonderful world of POTS. Many people who have had POTS are doing great, and don't have nearly the severity of symptoms they once had. I have gotten these things while walking----stopped me in my tracks. I called Dr. Grubbs office, and the nurse told me not to worry unless I blacked out or got dizzy, but keep in mind you can get dizzy if the blood flow isn't good too. I would squat down quickly---and bingo---they go away----must have been the blood flow.

I have noticed that I have been getting palpitations again, but I also have pressure on the lower brain/brain stem and cervical spine---and this will affect the electrical conduction of my heart. When this happens I just lay down and take the gravity off my body which takes the pressure off that area-----that works too for me. The other day I walked around the mall to much, and it felt like my heart dropped in my gut and then was just quivering and then straightened out. I was sitting at the time, but only for about a half hour after walking more then I usually do. I simply stressed my body too much.

Remember to get the fluids into you---this will help give your blood volume----your heart likes that.

Don't feel embarrassed----never feel that way. This site is for everyone, especially for those having the rough times. I thought my life was over when I had the very same thing going on with my body that you are having now. Well guess what----it wasn't over and I have learned so much since then-----

I often found that reading something I enjoy helped a lot because it forced me to really focus on something else. I know the feeling, I really do, it really messed with my head, and I didn't have this site or any other support other then my husbands at the time. All the Docs thought I was filled with anxiety and wanted to give my all sort of meds I refused to take. In fact I have had heart palpitations for many years even before my POTS crashed. I've been on beta blockers for 15 years. I have also tried to go off them---and I didn't die, the tachycardia just came back---that was all that happened.

Some of us have over stimulated sympathetic nervous systems-(the fight or flight part of our nervous system). In other words---too much adreanaline, or the body over reacts to your own adreanaline. This is all part of POTS and other ANS dysfunction or dysautonomia.

This kind of thing has been known to go away as mysteriously as it comes. Then it tends to come back, but a lot of times not as severe. An old friend of mine used to call it "George". This was back in the 80s before I took anything for it. I would say the heck with it, go out and dance and drink a few beers. Now my POTs and other health issues won't allow the beer, but I still try to dance.

Hang in there and try not to be too hard on yourself---this too shall pass.

Julie :0)

[JLB]

Thanks.

I mean it, the responses I've gotten here and on my other thread has helped me tremendously. I'm so grateful for the caring and the concern.

[msumom]

Im sorry your son (and your family) has to go through this. Have you tried him on lexapro as an antidepressant. It has the least amount of side effects and I recently read some research stating that lexapro will help with nerve conduction (which could be a part of POTS)

I take Klonopin twice a day. It helps keep me calm. I take valium when I need it. It keeps me from running to the ER when my symptoms get bad (I swear Im having a heart attack).

I dont think you need to worry about the addiction part. Just keep him off of xanax, being an ER nurse, I have seen some pretty bad psychosis associated with withdrawal of xanax. I have also seen it with Ativan, but not from withdrawal, from actually taking it long term. But whatever benzo you put him on just watch out for symptoms of over medication and when he comes off of them taper the dosage and dont change anything without talking to his doctor. and I pray you have a wonderful doctor.

God Bless

Janine

<{POST_SNAPBACK}>

[msumom]

Janine and others - I'm desperate for any feedback. I posted before about my son having seizure-type activity. I realize now he may have been having a reaction to the Ativan he's been on for over a year. In January, he kept getting worse and worse. The doctor kept telling us he could take between 2 to 8 mg a day of Ativan if it was stopping the seizures. I realize now it was probably making them worse, and my son (25 yrs old) was becoming more and more confused as the seizures got worse, until in April, he took an overdose, saying he didn't think it was ever going to get better. This is someone who has always had a pretty positive outlook despite dealing with hyperadrenergic POTS for 7 years. Of course, I had to take him to emergency--they would not admit him to the psych/med unit, but only to the psych hospital, where they cut him off of the Ativan cold turkey. He stopped sleeping, and 4 days later was brought back to emergency because of bad convulsions, but sent back. The psychiatrist told me he thought POTS was a psychosomatic illness, and my son has Munchausen's. After frantically trying to get someone to listen and giving them information, trying to get them to call Dr. Grubb, etc. they finally released him to my care on April 27th after a week in the hospital. With family's help, we managed to get him through another week of virtually no sleep (a few minutes a day). Then the nightmares and real withdrawel started. Numb feet hands, tongue, convulsions less in number but more in intensity (I thought he would jump out a window). After speaking to a detox dr. (his primary has bought into the psychiatrist now), I managed to talk his dr into allowing an 8-day taper on phenobarbitol. My son was doing really well at the beginning of the taper (better than I'd seem him in a year) but as it lessoned and stopped, got worse again. The dr agreed to a continuing script of pheno for another few weeks (of 30 to 60 mg a day), but my son has on and off periods of eye and face twitching, jerks, and gets extremely paranoid sometimes. The detox dr told me last Thursday (but said he really shouldn't be talking to me after this- my son is not his patient) that paranoia could still indeed be from the withdrawel but after a few more weeks if he isn't better, maybe it is something more. We are scheduled to see Dr. Grubb on June 9th thankfully after more than a year, but my big fear is that if this is going to take some time for my son to get back to normal, that this will be mistakenly seen as a mental illness, and he will be put on psych drugs that will do him more harm than good. He is still under orders to see a psychiatrist in order for him to be released to my care. They wanted to put him on Depakote and Abilify, an antipsychotic. Before he was put on the Ativan a year ago, he had had two bad med reactions to Adderall (a psychotic reaction that went awy as soon as he was taken off), and seizure type reaction a month later when his beta-blocker was mistakenly doubled by the pharmacy, and he stopped sleeping and was put in the hospital where he was put on the Ativan. Any feedback any of you might have would be very much appreciated. Thanks, --very scared.

[Guest Julia59]

edited

[morgan617]

msumom, I am sorry you are going through this with your son. Ativan is used a lot for acute seizures, but not typically for long term use. You generally get an anti seizure med, like tegretol or phenobarb or something that's specifically designed for seizures. It can be very difficult for some to come off benzo's and for others it's not. It is never wise to stop them abruptly if you've been on them awhile. I can't believe the doctors did that, because if they helped the seizure activity at all, abrupt withdrawal will exacerbate the activity. He may have just been getting worse because he wasn't on a specific anti seizure drug. Has he had EEG's or any testing done? It sounds like he needs a neurologist more than anything to figure out these twitches and convulsions. If you could get him in to one, I would think that would be your biggest help right now. He's getting shuffled around so much, it sounds like the right hand not knowing what the left hand is doing. There is a lot of controversy about how long benzo's stay in the system, and it's a hot topic, but I do know that ativan has a pretty short half life, so this seems pretty far out to still be suffering from withdrawals. I was jerked off tricyclics many years ago and they have a long half life. I was miserable for about a week, then was fine. There are so many types of seizures too, he could just be having them a lot. The twitching and stuff. I guess i would just try to get into a neuro and get some testing done as soon as possible. Good luck and keep us posted. morgan

[JLB]

Janine,

I just noticed something on this posting-------and I find it to be a little maddening.

As a nurse----why would you talk about seeing many people dropping dead of dysrhythmias to a web site forum in which a lot of people suffer from tachycardia, palpitations and arrithmias?  Wouldn't you think that would scare the pants off some people?

Many people, including myself spent a lot of time trying to calm ourselves about these very scarey events which happen to be part of POTS.  We have learned through many different medical professionals that they are most likely NOT life threatning, then we finally feel a little less scared and try to move on with our lives.

When I first started gettting POTS symptoms, my cousin just started her first year of being a paramedic.  I was having a terrible time with tachycardia and palpitations-----and also severe panic attacks which I later found out was an accessive amount of adreanaline.  She sat there and told me about how they had to shock peoples hearts back into rythm.  To this day---I still want to punch her. 

Julie :0)

<{POST_SNAPBACK}>

Julie, I haven't been the same since this thread. I sink into panic and hopelessness a lot more often than I used to - I wonder if the MDs are lying when they say this won't kill you. I had a close friend, with no apparent problems other than palps and such, die suddenly last January of a heart attack. (She hadn't seen a dr. that I know of, though.) But the thing is, I don't understand anymore how this works - how it is that the heart stopping and starting and messing up won't eventually just give out. Even one of the other posters here had a mom who died in her 40's of sudden cardiac death.

I don't come here much in recent days. I'm not sure what's allowable in posting anymore, and I feel so hopeless anyway - Janineern isn't lying, I'm sure, so that means she's posting the facts the doctors don't tell us. She's seen it so many times: People die from heart rhythm abnormalities, and I know I NEVER have a day without dozens - if not hundreds - of them.

I'm still planning on seeing the new MD, but I really don't see the point anymore. Thanks for posting what I've been thinking for a while now.

JB

[Miriam Poorman-Knox]

sorry