Benzodiazepines For Pots

[Guest Alex]

I've noticed that a bunch of people here are taking benzodiazepines - ativan, clonazepam, xanax, valium, etc.

I'd appreciate if you'd be willing to share your experiences with them.

Do they help you? If so, how? What particular POTS symptoms do they help you with? Also what was your dr's rationale for prescribing them to you?

Thank you for your input.

Alex

[Angela]

my md thought due to my symptoms I was having simple complex siezures, knew I was having issues with adrenaline when I went for my visit. he rx'd me with klonopin generic .5 mg then as it has a softer set in yet longer 1/2 life then other benzos such as xanax, which the first md dx'd when he thought I was having anxiety due to vertigo. since then, about a year and a 1/2, on bad days I will take up to 2 mg half at a time but on good days, only .5 in the a.m. when I am super tachy. neither the epc nor my neuro think that is weird or wrong, i guess they get it. i always start with a small dose but if i am having major adrenal issues i will taper up, a quarter or 1/2 at a time depending on how severe my symptoms are. and even if i have to take 2 mg one day (which i do rarely) if I only take 1/2 mg the next I don't feel anxiety or addiction issues.

[Altruism]

I love my Klonopin! My doctor thinks I have hyper POTS (still waiting for some test results), but in the meantime Klonopin is a life-saver when it comes to adrenaline rushes and anxiety! It works almost immediately for me (weird, I know) and stays in my system for hours.

Angela, do you get sleepy or outspaced at 2mg? I'm only taking 0.5 these days but I may need to up it to 0.75 or 1mg as my anxiety/adrenaline rushes can be severe.

What does an adrenaline rush feel for you and do you get it only when standing?

Also, a stupid question... There is no anxiety a pill cannot take care of, right? I need some reinsurance that I can be helped, no matter what. Thanks!

[Hopsmom]

I take Xanax as well. I think it helps my symptoms and I can't help being nervous dealing with this illness. Never knowing when I will feel like passing out.

[brethor9]

Hey Alex

I take .05mg ativan 2x daily sometimes less. Have been taking it for a couple of years before I was diagnosed because just like everyone else it was anxiety ..... It was always one of the meds that worked best for me but never for its normal indications. It always seemed to help the weird symptoms like nerve pain, stomach pain, leg cramps, headaches and bloating etc......on and on. I have recently found out that benzos can act as a mast cell stabalizer ......who knew??? that's why it always helped to get me out of a bad episode.... zantac, ativan, benedryl have kept me out of the ER many times ...... I am well aware of the addiction issues and my doctors are not really concerned at this point considering all the other crap I have going on lol. I look at it this way.......every one has a dependancy on something BUT if it helps me to function even a little....it is completely worth it!

Bren

[FarmerAmy]

I take 0.5mg of Klonopin at night. It really helps with my chest pains and tachycardia. It also knocks me out so I get a good night's sleep.

My (very unscientific) theory is that my ANS is overstimulated and the Klonopin helps to calm it down.

I wound up taking Klonopin for POTS in a roundabout way. I took it for anxiety a few years ago and noticed that I didn't feel lightheaded while I was taking it. I discontinued the Klonopin after a few months. Then last year I was having bad tachycardia and chest pains. I had some leftover Klonopin and tried it. I felt so much better the next day! I asked my doctor and she gave me a prescription for it. It doesn't do much for my lightheadedness now, but it helps a lot with my tachycardia and chest pains.

[futurehope]

I loved Klonopin. My POTS feeling dissipated while on it. Unfortunately for me, my nervous system adjusted, and then the same dose did not continue to work. As a matter of fact, I could tell when the drug was wearing off as I would become more anxious from the withdrawal than if I had never taken the drug to begin with.

Not wanting to increase my dose, I discontinued the drug. That was not easy since I had terrible insomnia and anxiety as a result.

My choice is to stay away from benzos.

[Angela]

I love my Klonopin! My doctor thinks I have hyper POTS (still waiting for some test results), but in the meantime Klonopin is a life-saver when it comes to adrenaline rushes and anxiety! It works almost immediately for me (weird, I know) and stays in my system for hours.

Angela, do you get sleepy or outspaced at 2mg? I'm only taking 0.5 these days but I may need to up it to 0.75 or 1mg as my anxiety/adrenaline rushes can be severe.

What does an adrenaline rush feel for you and do you get it only when standing?

Also, a stupid question... There is no anxiety a pill cannot take care of, right? I need some reinsurance that I can be helped, no matter what. Thanks!

I don't get spaced out or sleepy at all - there have been very few occassions when I have had to take 2 mg and I do it over the course of day/night if my symptoms don't get better 1/2 pill at a time. Typically, I just take 1/2 in the a.m. when I am supertachy and feel my bp fluxing and getting myself and son ready for the day. if I have to drive farther than 10 minutes and there is a lot of traffic I know to take another 1/2, that's the only way I will make it to my destination withought having to constantly pull over!

an adrenal rush for me is what I assume a panic attack feels like, I get very shaky, cannot form thoughts/words, extreme sense of doom/fear/almost like hysteria trapped inside me. I don't get it just upon standing, most worse occassions are when driving and I have woken up in the middle of the night, while laying flat in the middle of a rush.

[Altruism]

Thanks. I wonder if I have anxiety or something else going on. I feel warm sensation, flushing, extreme panic, fear, nervousness, doom, an then the chest palpitations come. Sometimes they even make my heart go into SVT. This is the scariest feeling in the world! Is that an adrenaline rush or anxiety? I get it while resting in bed, right bore sleeping or upon waking up. It's not postural. My doctor thinks if it's not an upright symptom it's not POTS. What is it then?!

[Guest Alex]

Thank you ladies for sharing your stories.

I was given ativan, then klonopin for panic attacks before being diagnosed with POTS. The highest dose of k I ever took was 1 mg a day (.5 am and .5 pm) and I have a hard time remembering those 3 mo as I was in a sort of a constant dream state. Once I reduced it to .5 mg a day split in 2 (am and pm) I felt like I hit a brick wall. I've been having a hard time stabilizing and tapering ever since. So here I am, a year later, almost done weaning off and experiencing a million symptoms I never had before that are only getting worse as I lower my intake.

Angela, wow, I was unable to focus much while on 1 mg a day, and I never dared drive in that state. But then we all react differently.

Altruism, I used to get those adrenalin rushes almost exclusively at night while sleeping, or while resting in bed during the day - I can probably count on my fingers the number of 'attacks' I had while standing, or while changing positions from horizontal to vertical. Also, klonopin has quite a long half life 18-50 hrs so yes it stays in your system for quite a while. Pills can definitely help in an anxiety attack, but man they are addictive and come with so many problems (I am not generalizing here, just sharing my experience).

Hopsmom, I hear you, living with POTS is quite the rollercoaster ride!

Bren, if not fore some older posts of yours I would have never learned benzos are mast cell stabilizers. And I hear you, when you have to choose between 2 evils...you do what's best for you given the circumstances.

Amy, it's good that you're getting some relief of your symptoms...be it temporary I guess. If only klonopin would even touch my chest pain...

Futurehope - I'm with you 100%. Once I'm done tapering I hope I won't have to touch a benzo ever again. They've caused me too much trouble and I'm having a terrible time getting off klonopin.

Again, thanks for your input everyone.

Alex

[Guest Alex]

Thanks. I wonder if I have anxiety or something else going on. I feel warm sensation, flushing, extreme panic, fear, nervousness, doom, an then the chest palpitations come. Sometimes they even make my heart go into SVT. This is the scariest feeling in the world! Is that an adrenaline rush or anxiety? I get it while resting in bed, right bore sleeping or upon waking up. It's not postural. My doctor thinks if it's not an upright symptom it's not POTS. What is it then?!

Altruism,

despite being diagnosed with POTS via TTT a year ago, I have the same dilemma. Most my tachy episodes have happened at rest, or while I was asleep. I've only had 1 or 2 documented episodes of SVT that my drs said I should ignore. Also, I never had any SVT episodes before being diagnosed and before starting my current med regimen. Even the drs I'm seeing have different opinions regarding my having POTS. One thing I know for a fact - my current treatment is not working for me, on the contrary I believe the side effects of my pills outweigh their 'benefits'.

Hang in there and try to keep track of your symptoms as much as you can - I keep a journal, and it helps tremendously to have it with me for drs appointments. Has anyone suggested an electrophysiological study to you - maybe they can figure out what triggers those SVT episodes?

Best,

Alex

[Angela]

klonopin is also a seizure med and rx'd 30 mg per day!

[kitt]

.

[Guest Alex]

Angela,

I've read about klonopin as being rx'd for seisures, but I didn't know you can take 30 mg a day and still function. I was knocked out by 1 mg. On the other hand I've taken quite large amounts of other meds that would normally make an elephant drowsy but had no effects on me. What I'm saying is that we're all so different.

Kitt,

thanks a bunch for the info and the article. I have no doubt that there are people who benefit tremendously from benzos, but I am not one of them. I am also well aware that benzos are quite controversial and even the medical world is at times sending mixed messages about them. We're still trying to figure out the real cause of my POTS, and hopefully once we get to the bottom of things, my dr will be able to figure out a better course of treatment.

Alex