Xanax

[avais1]

Hello everyone! I hope you are all doing well today. I have another question for you (yes, again)!

Xanax - for those of you who have the hyperadrenergic POTS and/or anxiety issues along with your POTS, and you have taken Xanax, has it worked for you?

I know about the downfalls of this drug (addiction, etc), but I need to know for those of you who take it correctly (and I know WE all do), does it work for you?

The reason I ask, is I struggle with the hyperadrenergic POTS, with norepinepherine shooting through the roof. This also sometimes sets off panic attacks for me. Dr. Low had me try phenobarbital, but it made me sicker than a dog.

I am looking for an alternative. I need something that acts fast, and can calm me down until the storm passes. Thanks much!

[morgan617]

This has always been a very sensitive topic. I'm not certain you will get many replies. Benzos have a huge stigma associated with them and so it is always controversial (sp) My personal experience with them has been very positive. I realize this is NOT the case for every one however. I take valium, which is also a benzo with a long half life for meneires disease, which is an inner ear disorder causing severe vertigo, vomiting and all kinds of pleasant things like that. I have been taking it since 1997 and only rarely do I have to increase the dose. ie during an acute attack. So I have basically been on the same very low dose for about 8 years. I have not developed a tolerance to it and had to up the dose, although this does seem to happen to some people. I do find that it also helps with my "episodes" as I like to dub them. They are addictive with long term use, no one will deny that. I personally weighed the negatives against the positives and found that if I can find one stupid thing that helps me even a little, then I am going to do it. However, this is a decision you must weigh carefully and discuss in detail with your doctor. Benzos have been around a very long time and every doctor understands the potentials for problems, but that doesn't mean they aren't willing to not understand the consequences of some actions. If he is putting you on them to really help you, as opposed to just get you leave him alone, there could be a real problem. My doctor says he has found no other way or drug that helps me, so if he is labeled a dealer, he can live with that. So can I. This means that he has thought long and hard and only wants the quality of my life to be a little better, not to just get me off his back and stoned. My ear nose and throat is in total agreement as we have tried everything else, including shooting steroids directly into my middle ear with a needle The fact that it helps with my Oi is a fringe benefit. I'm not sure if this helps you or not, and it's just my experience. Hopefully there will be others and this will not disinigrate as it normally does. Good luck with whatever you decide. morgan

[avais1]

Thank you for your honest reply. I appreciate your candor. I know this may be sensitive for some of you, but I do need to know.

I'll tell you a little bit more info as well, and maybe this will help. I had taken 0.5 mg of Klonopin in the past, only as prescribed by my doc. I didn't even use the whole bottle. I do have legitimate anxiety/panic disorder, and have been cleared for appropriate use of anti-anxiety meds by my psychologist and physician. Per Dr. Low, due to the tyoe of POTS I have, it is very difficult for me as POTS will set off my anxiety, and anxiety can set off my POTS. That great "chicken or the egg" debate.

The Klonopin worked well, but left me too groggy, and was too long acting. I am looking for something that wears off faster than the Klonopin, and was told that Xanax might be better. I haven't taken any benzos in about 2 years, as I don't prefer the after affects. I also haven't taken any since POTS came back in two years ago, so am unsure what to expect now. Thank you for any responses. I really am grateful, and know that I am not here judging anyone, I just need some honest answers. Thank you!

[Merrill]

Xanax works within first fifteen minutes and doesn't stay in system longer than 4 hours, or so I'm told. It might be a good option for you! How often do you think you'll take it?

Do you suffer from high heart rate anyway? What other medications are you taking?

I ask because I filled a scrip for xanax in advance of an MRI -- I've taken a fraction of a pill on a couple of occasions. It's nice, but not that big a deal--addiction won't be a problem. I intend to take it rarely, before a flight or other high-stress situation. (I hate it when I'm in a meeting and wish I'd taken some...)

If high heart rate is a problem, I recommend low-dose beta blocker instead of xanax ... sometimes the high heart rate makes you feel panicky, and if you can get that under control with a non-addictive super safe and commonly prescribed medication like beta blocker, you might feel a whole lot better generally. About a month ago, I started taking 25 mg of toprol daily, and it's brought me down to a more comfortable place (low 100s instead of mid-100s all the time) and so I feel less anxious all the time. Maybe that would help you too?

(Forgive me if you're already taking one... )

good luck w/your decision,

m

[MightyMouse]

I have xanax at home--and only take it when I can't get the tachy to slow down--I take half of a tablet (not sure what the dose is, but low). It does seem to help but I've been super careful not to take it more than 2 days in a row because of all the benzo problems folks here have reported, and on the NDRF forum too. I've had the same bottle that started with 30 pills in it since last November. When it's gone, I don't think I'll ask for a refill as it's not that useful for me.

Nina

[Gena]

Hi Avais,

I can completely relate to the "anxiety setting off the POTS symptoms and POTS setting off anxiety". I never had any panic attacks before, until getting POTS last summer, so I try everything from meditation to yoga to relaxation CDs and music.

I absolutely hate to take any drugs, even an Advil, so I take meds only as a last resort. I have been taking Klonopin regularly before bed for a few months , and I'd eventually like to wean myself off of it. I take half of a .25 mg sublingual wafer of Klonopin at night before I go to bed to help me sleep. Sometimes I wake up in the night and need the other half.

I don't normally take anything during the day. I have however, taken a .25 mg of Xanax (sometimes even just half of it) during the day when I really needed it, and I do just fine with it. I've had no problems with Xanax. The Klonopin seems to help me more with my sleeping and tachycardia issues at night more than the Xanax does (I've tried the Xanax at night and I prefer the Klonopin for nighttime).

(Don't worry, I never take both of them the same day, as I'm not sure that's safe!)

The Xanax seems to help ease my anxiety and elevate my mood better than the Klonopin, so a low dose of Xanax as needed might help you if you need to calm your anxiety.

Benzo addiction is always something to consider, but it seems like those of us on the board who are taking them seem to be ultra responsible and conservative about their usage.

[avais1]

Thank you all very much for the replies. I don't suffer form a high resting cardiac rate, but I was hooked up to the tilt table when Dr. Low recorded a panic attack that mimicked a POTS attack. My heart shot to 170 (I was lying down when it happened) and it passed in about 4 minutes. He said it was panic, and that the POTS and panic can sometimes go hand in hand.

I have a flight scheduled for next month, and I have not flown since 2003 when I got sick again. I think I can handle the POTS on the plane, but I do not think I can mentally control the anxiety during take off, and my doctor agrees. That is why I was asking about Xanax, as hopefully it can get me through the flight.

I too hate taking meds, which is why I was asking all of you for your advice. I only take lexapro 5 mg for POTS and Anxiety. It works, but during a panic, I need something extra, and FAST.

Thank you all so much for your answers, I really appreciate that you shared something so personal with me.

[Jenn202]

I have taken a low dose of xanax for years..... It helps just about every single neuro problem I have...if I could only be 50% functional for a day, I cam be almost 100% if I take it... For me it is something that alows me to live a fuller life.... And I am just happy I have found something that helps as much as this has.

[Miriam Poorman-Knox]

Hi,

I understand the controversy involved. I have been taking xaxax on and off for many years. It is a recommended drug for pots. Also, dor panic attacks. The important thing is to take thecorrect dose. It starts at .25mg and goes to 2mg.

I only take it prn, and my doctors don't have a problem with that. I certainly would ask for some for the flight. Don't be afraid to ask, just tell them its on the list of approved drugs for pots and for your panic attacks, and if they want to start you out with a certain # of pills. Blessings Miriam

[Gena]

Avais,

I am glad you mentioned this med in regards to flying. I may be flying (on a plane ) in May for the first time since having POTS as well. I have been debating whether the Klonopin wafers or a Xanax would be better for the flight. Like you, I am unsure whether I'll be able to control the tachy due to the anxiety, so I want something that will really do the trick. I know others on the board who say they take a Xanax before a flight, but I don't know if that is for the dysautonomia symptoms or to avert a possible panic attack.

[Dawg Tired]

I am convinced that without the Xanax I would have been more non functional than I have been for the past 5 years. I had heard all the horror stories and I would sometimes only use 30 of the .25 pills in a year. Then when I moved back to the Ozarks and went back to a doctor that had known the "old Gayla" (former Gayla??) he told me it might be a quality of life issue and to see if things would improve if I took it before things got really bad like I had been doing. He was right - imagine that! I still only use maybe 30 in 2 months but I have found it makes a tremendous difference.

[Guest Julia59]

Avis1,

I took Xanax in the early 90s and it worked very well for me. I took it for about 6 months when I had a problem with the Panic attacks/hyper adrengic. I did not get addicted at all. I was careful though.

I also took phenobarbitol back in the early 80s and that worked like magic. My attacks were under control instantly---or as long as it took for the drug to matabolize into my blood stream. I took it for about 6 months also----I felt a little dependent on it, but I took that as a warning and weaned myself off. I did not have a rough time coming off at all. Since Phenobarbitol is also an anti-seizure drug-----It makes sense that the problems stem from the brain.

Hope that helps a little. I know both drugs can be addicting-----so caution should always be used. Each person is individual, and addiction should always be considered.

Unfortunately, some Doctors can mislead patients and send them down the wrong path. I was lucky----as I some how had an inner sense that kept things in line for me-----

Julie :0)

[MomtoGiuliana]

I took Xanax on an as-needed basis for about a month, when I started an SSRI. I don't think I could have stuck with the adjustment period without xanax. I had lengthy panic attacks that became more severe when I first started the SSRI. The Xanax really helped me. I think that as long as you use it as sparingly as possible and under the care of a doctor, you shouldn't have to worry about addiction problems.

Katherine

[Jersey Girl]

Dear Avais, I also have a presciption for Xanax (0.25 mg scored tabs) and find that it helps me as well in those situations that naturally increase anxiety such as flying. I find that premenstrually I also have a need to take it. I don't take much of it and have found that even 1/4 of the tablet often helps. It is the only thing that has helped me in those situations as I react poorly to beta blockers. Martha

[morgan617]

I just want to say this is the first time I have seen this topic so articulate and understanding. It is wonderful. Benzos are not for everyone just as everything is not for everyone. But as my doctor says, if it improves the quality of your life, why are you balking at it? I realized he was right. I also take an extra dose of valium on the very rare occasions I have to fly. I do not have full blown panic attacks, but the anxiety is awful as it just sets off everything. I HATE to fly. I just wanted everyone to know how grateful I am these postings have been so positive, and have not made anyone feel bad about something they need. I believe many of you are right. We are not here looking for a drug fix, just something to get us through the rough times, and if we can find something that helps, great! There are so few things we really can do to improve the quality of our lives sometimes. This has been such an awful year for me that if I was going to become an addict, it would have been now. So don't cut off your nose to spite your face. We are all intelligent people on this sight and I believe because we all have such really bizarre reactions to stuff, most of us aren't going to use things that actually make us worse. We are, in fact, hypervigilant as opposed to lackadaisial. So good for us! morgan

[Dawg Tired]

I, too am happy to see so many positive postings. I think this just shows there is no "one size fits all" solution. Everything else including my pacemaker has been a miserable failure.

Hubby and I have had a dream for many years of taking an Alaska cruise. We have a goal of doing that by the end of 2005. Good thing I have xanax... and phenergan...

[lalalisa]

Xanax has helped me through my worst times of anxiety. I took it as I needed it for a few weeks -- until my SSRI kicked in.

I am on Paxil - CR (controlled release). It has been such a great med for me - I feel like myself with very few side affects. I haven't had an anxiety attack since beginning it 2 years ago.

Different things work for different people - I hope you can find something to control your anxiety. I think anxiety can be the worst symptom of all - because it literally controls everything about your life for that time period.

Hang in here!

Lisa

[RunnerGirl]

I also wanted to weigh in here. I have a hyperadrenergic form of autonomic dysfunction. And when I was at my worst, I would have terrible feelings of 'out of the blue' nervousness that sometimes would crescendo into panic. I won't call them 'panic attacks' per se, but for all intents and purposes, that's what was happening, (ie, same physiological response like adrenaline rush, heart and BP increases, sweating, feeling of doom, feeling like I couldn't get a good, full breath, etc.) This feeling was the most horrendous thing I've ever experienced - and were it not for a low dose script of Xanax, I truly think I would have been paralyzed by fear and worry about when the next wave would hit. Somehow just knowing I had something that could take the edge off made the events more tolerable and sometimes I didn't even take med even though I had it.

Like others have mentioned here, Xanax (and other benzos) are best used as needed. But I actually was taking it daily for about a year and a half (up to .25 mg three times a day). I often took less, but I did take it regularly for a sustained period of time. I was able to taper off with ease and with no side effects or withdrawal symptoms. If you do not have a history of addiction, if you follow your doctor's prescribing advice, and you taper off the drug slowly if you've been using it regularly (again, under the care of a doctor), you should have no troubles with this medication. It is regulary prescribed for people with acute situational anxiety (ie, fear of flying, public speaking). And some who suffer from panic disorder who cannot tolerate SSRIs find it a life-saver in treating their condition.

In hindsight, I wonder if a low-dose beta blocker wouldn't have been better for my particular situation. But the xanax certainly did help get me through the worst of my days when I was very symptomatic. I wouldn't hesistate to take it again if I have a relapse. And I DO keep spares around for those high anxiety situations like turbulent airplane rides!

RunnerGirl

[avais1]

Hi everyone,

Thank you all so very much for your candid, heartfelt, and honest answers. I can't tell you how much it has helped me. My doctor is phoning in the script for the xanax and scopalomine (I struggle with horrible motion sickness, always have). I am taking a "trial run" short trip on March 3rd. The Xanax will be for my intense travel anxiety, and I do mean intense.

When POTS first hit me, I was traveling in England. When it hit me again, I was in Bermuda, and then again in Key West. I relate those memories, and have not traveled since 2002, when Dr. Low finally told me what I had. As such, my poor fiance has also not traveled since 2002.

I have the worst case of cabin fever imaginable, and it is finally outweighing my fear. Not to mention the look of disappointment my fiance tries to hide when I "meltdown" when we travel more than 2 hours from home. He has been so kind, but being bound to this city is not fair to him. I have to do this, for us. For me.

Bless you all, and thank you all, for giving me the courage to go forward. I'll let you know how it goes!