Which Benzo Drugs Work Best For Your Pots?

[CarmelRob]

Hi, I haven't posted for such a long time since I've been in and out of hospitals, ERs, etc. for my severe case of POTS.

I'd like to know what benzodiazepines work best for POTS. I remember one person saying, for instance, that the only thing that worked for her was Ativan(Lorazepam) and I seem to find it true for my case. Here are my experiences with this class of drug.

Xanax(alprazolam) seemed too weak and short-lived for me.

Klonopin(clonazepam) exacerabated my symptoms of dizziness and excessive urination where I "grayed out" and fell on the floor after taking 1mg.

I am currently taking .5mg of Ativan twice a day together with my Cymbalta(Duloxetine) and have seen much improvement. I don't think I could tolerate Cymbalta otherwise. This could be close to finally being the winning combination for me but I am still comtemplating Valium(Diazepam) instead of Ativan and Effexor(Venlafaxine) instead of Cymbalta. I'll save the Cymbalta vs Effexor discussion for another time.

Thanks a lot for your help.

[Lauren78]

Hello. I haven't tried the Ativan, but my step-father who is a doctor highly recommends it. He can't prescribe it for me, we are in different states and he is retiring; and my current cardio isn't sure about it. Nonetheless, when I was diagnosed with POTS my step-dad said the Ativan works wonders for most people with NCS and/or POTS. He said a 0.1-0.5mg 2-3 times a day is non-addictive, doesn't give the undesirable side effects, and really takes care of the dizziness and fast heart rate. So if it works for you, I would stick with it. However, I have no experience with any of the benzo's you mentioned...so I am just giving you my two cents from what my step-dad (a doctor of nearly 40 years) has told me. Of course your personal doctor and you are the only ones who can make the appropriate decisions for your care. Either way, take my two cents as you will.

[doctorguest]

If Ativan and Cymbalta seem to work for you, what is your reason for wanting to change the combination?

[Sophia3]

Good question doctor quest!

I was getting ready to respond with "we are all different ...like snowflakes...what helps one may make another one feel ROTTEN"..but it seems your choice is working for you.]

Me, for insomnia..chronic since 1990...sleep meds never worked but Klonopin does...half or one tablet of 1mg. I can use the generic.

For days of horrible adrenalin surges and Gi problems and bad orthostatic tolerance, I take .25 of a xanax...especially an hour before I go to exercise.

Xanax works like a COMPLETELY different med than Klono tho both are "benzos". So many ANS docs freak over benzos but think NOTHING of pushing speed/stimulants at pts for fatigue. They are both controlled substances.

I never take as much as written and my prescriptions expire long before I use them. I also have a low tolerance for meds...if I take beta blockers, it lowers my already low supine BP.

Also if I have muiscle spasms from FM, xanax works like a muscle relaxer!! it is amazing. I can take two at a time if need be...but the so called "muscle relaxers" or pain meds....I can't tolerate. Thankfully THESE NEEDS are rare!!

The med I can NOT live without is my DDAVP!! It helps me from urinating too much (every 30 minutes) and keeps me from being dehydrated. AND I use less chapstick with it.

Also I never take anything 24/7 which makes me not build up a tolerance.

My doc says I am not an addictive personality..and he laughs when I have shown him my pill bottles with bits and pieces of broken Klonopin and xanax...sometimes a 1/4 tab Klonopin helps me be able to relax to sleep.

some folks take high doses but hey, if it helps you FUNCTION and do stuff, more power to the people.

I have seen some high doses of benzos in some people but they are feeling good enough to WORK and I can not even leave the house whenever I want so I choose not to throw stones.

Whatever helps with this POTS junk and some of us have higher norepi levels than others.

I hope you continue to do well on your combo.

But would be curious as to why you asked your question. I know many who take benzos have been shamed for it or chastised over the years ...not here, but in general...so please take WHATEVER helps your quality of life anf function.

Be well.

[Sunfish]

sophia -

i've noticed you mention stimulants in a negative light several times so wanted to chime in with one thing. i don't disagree that they are probably overused in some situations. but i also don't think they're always a bad thing. AND - what i most wanted to point out - is that they are not only used for fatigue issues when it comes to dysautonomia as some of them also have a proven vasoconstrictive affect (as a sidenote, midodrine was actually developed as a result of studies with ritalin...in order to have a similar vasoconstrictive affect without crossing the blood brain barrier). and while perhaps not as documented via research they also seem to help some cognitively. so it's not just a matter of fatigue (which isn't to say that fatigue cannot be disabling...not trying to minimize that).

for me the BP-raising affect of concerta allowed me to finish college. and using daytrana currently allows me to have some ability to focus on something now. neither of these has come close to making me normal or without fatigue or other issues. but they improved/ improve my quality of life to a degree that - for me - the benefits no doubt far outweigh(ed) the risks. i'm not saying this should be the decision for everyone, and by no means think that stimulants should be the first thing taken. obviously if there's a treatable sleep disorder or if midodrine does the trick for vasoconstriction then that's great. but when other things don't work or can't be tried i do think stimulants can play a role...and for several reasons.

melissa

[Sophia3]

Sorry Sunfish...i did not mean to slam the stimulants and benefit greatly from midodrine the timee I take it...rarley due to expense.

My POINT was how "doctors judhe benzo's bad, ADD meds good." SO MANY kids over medicated with that stuff tho I KNow many with ANS do benefit. Also many cause high ocular (sp) which is another reason i do not take midodrine as much as I would like...but the cost, too.

Sorry for the mixed message. I say whatever it takes to help a pt but I do NOT see how an MD can play judge and jury and decide who BENEFITS from calming the ANS, others the stimulants, others BOTH.

I meant the put down to the docs not the meds per se.

Sorry, my laptop keeps bumping off line with a disconnect issue and its only my computer..so I am frazzled.

But also meny do take stimulants for fatigue as I have seen the articles and that would be horrible for the adrenal gland and other issues. That's why the stuff that does not cross the BBB like midodrine or proamatine can be ideal.

Also, in the news ADD meds are stolen or sold in schools like crazy around here...to help kids stay up late and party.

While ALSO taking their benzos!! *sigh* but we can't keep punishing pts due to folks who abuse stuff for party purposes.

I just think both sets of drugs should be looked at EQUALLY by the folks prescribing them.

Also I know of some POTS pts who can drink coffee ALL DAY LONG to keep going even if they are stay at home mom. To me, more than two cups in the AM makes me jittery but I DO NOT WANT to have to get a prescription for COFFEE and we are headed that way. Also hidden "natural stimulants' in vitamins that is dangerous if folks do NOT read the labels and self educate. That is a new trend "natural stimulants" in vita. Well, that ain't good for the AVERAGE folk at all.

Much like sudafed is helpful to sinus conditions but I have to sign paper work due to the meth issues in this State...so I am just showing my irritation that the UNVENESS of how docs look at meds. THough many ANS docs "GET" that the benzos can make some of us a tiny more functional but working to calm us thus cut back on the cascade of cathecholamines and whatever goes nuts for us.

I also know NCS pts without pots benefit GREATLY by stimulant meds to hlep avoid fainting.

Sorry if I stuck my foot in my mouth again without greater clarity.

Hope this helps more than it confounds. Too lazy to edit my previous post of verbosit.

[Sunfish]

no worries sophia -

i wasn't concerned about your post here in particular & understood what you meant re: the uneven treatment of the different meds. i just felt the need to add my two cents re: stimulants as you'd referred to their use in a negative light in post elsewhere recently and i'd considered responding then but hadn't (and now have no recollection where it was...perhaps in a thread related to fatigue?). i just wouldn't want forum readers to be scared away from even considering stimulants if not aware of the multiple uses.

and ultimately i think that different doctors have different comfort levels with certain things as i've actually encountered docs that were more than happy to prescribe benzos (for me brought up b/c sometimes used for nausea/ vomiting) yet were very anti stimulants no matter what...so in that regard it can go either way, whereas obviously the ideal situation is probably to have someone who is open to whatever is best for the individual patient at that point in time.

i've never needed anything to calm my system down & definitely agree that playing with combinations of "uppers" & "downers" so to speak could easily be dangerous territory (although as with anything i'm sure there are exceptions). but i do think there can be a place for stimulants in regard to fatigue & associated cognitive issues IF directly related to health issues that aren't otherwise treatable. certaintly NOT to replace getting enough sleep, reasonable rest, etc. in the general population or in all with any illness-related fatigue.

though not the case now, my diagnosis actually was NCS & POTS when i first took concerta (relative of ritalin) as proamatine/ midodrine wasn't doing enough for me alone anymore. and similar to what you referenced it was what kept me conscious, aka not fainting, enough to graduate & work for at least a bit of time in the "real world". i've never had issues with caffeine or anything else though in regard to getting jittery or overstimulated as my entire body (other than how fast i talk ) tends toward the slow. even during my POTS years i had concurrent issues with bradycardia.

not sure what of any of this is relevant but i've typed it now so am letting it be.

sorry for inadvertantly highjacking the benzo post!!!

melissa

[Sophia3]

That's ok...you only caused a thread DRIFT not a hijack!

And you are right, I would not want to scare anybody over stimulants...

or benzos...I have a doctor that so gets the benzo thing..and tells me to practice my meditation ..even the mindful version if my adrenalin won't let my mind be super still.

So really, you just help educate the folks here better by making me clarify AND you giving YOUR experience.

i would give ANYTHING for the ability to read again....I should try a dose of midodrine to see if it would help that...and my supine BP can be SO LOW maybe mido would normalize it. Now if they only made a decent generic of that drug..but it stank. But thats another rant , er, explanation for another day.

I also find that a xanax helps my knot sensation in my stomach go away so I can eat..,,I have to eat reclined or with feet up and sometimes just lying flat for awhile can calm the adrenalin so I have a relaxed stomach for food.

Nice to see you posting, Sunfish. and I am glad the stims helped you through school.

Concerta and xanax for everyone!!! Cheers!

[morgan617]

I started taking valium 1-2 mg over ten years ago for menieres disease. It's an inner ear disorder that causes disabling vertigo and hurling. Think of a boat in a whirlpool that's also bouncing up and down...YUCKO.

The typical med is a diuretic, but after 2 doses of HCTZ and a potassium of 2.3, they decided valium was a better choice. I now take 90 meq of potassium a day with no diuretic meds. But I digress.

After ten or so years, I have not only not developed a tolerance, I have decreased the dose. I take 2 mg three times a day. Valium is one of the benzos with a very long half life. Something like 50 hours I guess. I haven't looked too closely because I don't really care.

There are and always will be stigmas about benzos, by someone, but I could give a rip, it helps my meneires and my autonomic surges and that's all I care about. My doctor told me once if people wanted to call him a dealer for giving me a whopping 6 mg a day, they were free to do it.....He's just thrilled he can help a little.

I do not tolerate klonopin at all. it just goes to show how different we all are. I think when we find something that gives us a bit of better quality of life, who is anyone to deny us that? Or judge. Anyone walking or falling in our shoes for a very short time, will have a quick change of mind.....morgan

[Maxine]

Years ago I was diagnosed with MVP as my "problem". I had spells of tachycardia that came on suddenly, and sometimes it would last hours. With the tachycardia came tremors, stomach upset ect. This was when I was 23. I was given phenobarbitol, and it was like the thing never happened. It made me feel completely normal. However, I was afraid of addiction, so I weaned down from them over a 6 month period.

I found that not only did the phenobarbitol work so well, but it seemed to have a long term effect--------possibly by ending a cycle and giving my body a chance to calm down. From that year (1982--- ) , I found that I only had occasional spells that were much milder. The cardiologist that diagnosed the MVP tried beta blockers but they made me feel terrible. Then in 1990 I had BAD SPELLS again, but this time with fatigue---fluish feeling. I had been working since 1985, but this year I had started a new job, and some chemical fumes were coming into the office where I worked. When I went to the clinic my mother worked for during a bad attack, I saw a doctor who said my heart wasn't able to pump efficiently/relax between beats it was around 150 BPM, and I was shaking uncontrollably. He gave me a dose of Inderal 60mg. long acting. I have been on them since that day.

I was also put on xanax. I felt the xanax helped calm my body, and it allowed the betablocker to work better. I weaned off the xanax over several months. I was able to lower the dose of beta blocker, but I was never able to go completely off it. the same spells came right back. I continued to work until my health crashed in late 2000.

When I crashed hard in 2000, I was given ativan because the beta blockers were not working as well to control the tachycardia, or the adrenaline surges. However, it seems my body didn't like the ativan---(didn't really work). In 2001 Dr. Grubb diagnosed the POTS about 6 monhts after I crashed------by this time I wasn't able to work. He prescribed Wellbutrin which has a stimulant. I didn't know it at the time, so I tried it. It helped with the surges partially, but still left me feeling on edge a bit. I just dealt with it, and my body calmed down over the next four years or so. I couldn't understand how a stimulant helped with the adrenaline surges. I asked Dr. Grubb, "wouldn't it make it worse". He explained how it worked, but I can't rememeber.

The combination of beta blocker and wellbutrin worked for a while, also helping with the fstigue a bit, but not completely. After getting the cardiac loop recorder implanted I had a bad reaction to lidocaine. It gave me one of those "attacks", but it felt much worse then they used to feel. (I later found out that due to the EDS, I was circulating the lidocaine systemically causing a TOXIC reaction). KLONOPIN was prescribed a few months later. It works well---( about the same as xanax for me). I still take about half of the .5 dose prescribed. If I have to travel to another doctor out of town or have some other added stressors in my life I take a little more, but I average about half the .5 dose.

I think it works to calm my body, and let it catch up--------------WHICH MAKES ME MORE FUNCTIONAL--- I'm not close to "normal", but at least I can hold a conversation now----LOL. When I got so jittery I couldn't concentrate. I just want to live a little----ya know. I'm careful to not exceed the dose prescribed. I have a lot of health issues right now, and there are times when I feel like I'm going to cave in and lose it. Our support system isn't good, people just don't believe I'm that sick---------(ya know-------"I look so darn good"-----

I think a doctor who prescribes benzos needs to watch the patient closely to make sure they aren't building a resistance and increasing the dose too quickly-------------(this is where addiction can happen quickly).

I'd say the klonopin works well for me, and I don't have any desire to change it.

Maxine :0)

[sjprice23]

Hello,

I have been on Ativan (Lorazepam) for almost a year now, and we've had to up the dosage once the weather became hotter (WI). It is the only medication that has given me any relief, but it is only relief from the dizziness...my HR is still really high, fatigued, etc. etc., but the benzodiazepams somehow "trick" your brain into thinking none of that is there just so the dizziness isn't as severe.

This medication was only tried on me after EVERY cardiac medication was tried and they all either made me worse, I was allergic, or just didn't do a darn thing to change my HR or symptoms.

Diazepam (Valium) didn't help at all for me...the doc had hoped that switching back and forth between the two so my addiction and tolerance levels didn't sky-rocket, but valium just didn't trigger the same response in my brain as Lorazepam does.

I don't like the fact that I have been on it for so long because of the addiction rate of it, however, if I can drive because of it, I am thankful for it.

Hope this helps a little,

Sarah.

[Sophia3]

Sarah

Years ago I knew several pts that went to Vanderbilt for their research. Back then one of the drugs used was ativan and MANY found it most helpful.

24 years ago I was given Valium for a neck injury and it made me very cranky...dont' know if it was the pain and the meds or what...but never used ANY such med again until 1990 and have had good luck with either Klonopin or Xanax.

I don't know if Vanderbilt still studies benzos or not.

[Sunfish]

sophia -

ah yes, drift does sound a bit nicer than hijack:-)

when i was at vandy about 2 yrs ago i know that there was at least one benzo on the list for the drug trial i participated in. it wasn't given to me b/c they tailor the trial meds to the individual and benzos wouldn't have made sense for me to try, but i do recall at least one (perhaps more) being on the comprehensive list of options. i do know that they're still doing some form of that study now, though can't say for sure what meds are/ aren't now being used.

re: reading, i'm sorry it's something you're not able to do. i have had many months of time - probably about half of the past year in fact - where i haven't been able to read at all which makes me appreciate even more when i am able to read. i still have days when i can't. and can only ever do it with all my meds in my system & all but entirely flat. without meds in my system i'm not able to read even a single post on the forum or check my email though. but lightheartedly (aka not trying to minimize the frustration of not being able to read) i'll tell you to beware what you wish for re: your being willing to give ANYTHING to be able to read again b/c as much as i LOVE to read i would gladly trade it for some other things that have come my way & that i wouldn't wish on you or anyone else. not that either of us has any say in the matter or the ability to trade certain things for others anyway, but wouldn't it be nice on occasion if we did?? and while i know it's not the same, have you tried books on tape? some are dull as a lot depends on the reader, and at times i can't concentrate enough to listen to them either, but at times i've been able to listen when not otherwise able to read. and some are marvelous...better than reading the book itself i'd even say!

and last but not least, i remember some of your problems with generic midodrine and am wondering if you've given other generic versions/ manufacturers of it a try? i know it's still not cheap, but i've done fine with some - though not all - of the generic versions. so i wouldn't write them all off b/c of one or even two bad tries....

hope you're not melting in the heat...

melissa

[Sophia3]

Melissa

You are right..I would only give some things to read!! Need to manifest HIGHER energy first.

I have listened to things on tape but not books...it would drive me nuts listening to a voice when I would rather let my imagination in my head 'hear' the different characters.

I have used many generic drugs but only have SEVERE issue with LOUSY midodrine. So much so that after I took it home then back to the pharmacy to have THEM try to cut it in half, only to have it crumble, they gave me a refund on the difference in price for the real thing.

Are you saying more than ONE person makes the midodrine generic? I may have to call where I got it before and then Costco to see the differences if there is more than one generic.

The one I used was litterally two stack tiny pills put together, DREADFUL fillers and binders and a major choke hazard.

Yes, it's REALLY hot out today.....getting ready to drive down the hill to the Y and it's 8 degrees cooler there than our house so I will take my time doing my little 4 machines for legs and hips and maybe a few scrunches on the ball...and a few minutes on treadmill or recumbent bike.

Thanks for the generic tips.

[Sunfish]

yep sophia...i've encountered at least two but i actually think three or four varieties of generic midodrine...not 100% sure as i've used both 5mg & 10mg tabs to equal my 15mg dose. i remembered your story re: the impossible splitting & did have that happen once to me as well...though as i now have to crush them perhaps the version that falls apart so readily wouldn't be a bad thing for me! but anyway...i am certain that there is more than one company manufacturing the generic. good luck tracking down one that works for you!

melissa

[Sophia3]

Thanks, Melissa.

I can see I got some homework to do and will look on line for generics....

and call Kroger who was kind enough to see the JUNK generic THEY had...and see if they now have another brand. They have a strict policy to NEVER give refills once the drug leaves the store but the pharmacist had NEVER seen a pill crumble like that and agreed, it was impossible to get a dose to help regulate BP with such rubbish....Then will call Costco or look online for their generic.

Now back to our benzo show,

[DancingLight]

I do best with Klonopin (Clonazapam). I have tried xanax/alprazolam, ativan/lorazapam, tranxene, but not valium/diazapam.

The Klonopin helps me to sleep, calms my ANS a LOT, reduces forceful heartbeats, helps with pain and also helps with what is called myoclonus (although that has been renamed, but I can't remember the new name for it).

If what you are taking is working why not stick with it though?!

I exhausted all other possible meds before taking benzos and now my doc is just grateful something helps. Benzos get a pretty bad rap on this site sometimes, and I often fear addiction. But I am also torn b/w living a little bit better and not taking something that helps. I take .5 mg 3x a day.

I would have a lot of shakes and such without thie medication...

As for books on tape/audio--I couldn't live without! And the readers are FANTASTIC much of the time. Harry Potter? All the voices done by one amazing actor. Recorded Books and Listening Library rarely disappoint with their readers. I can't read at all...and thank goodness for books on cd/tape!

Emily

[godslyric]

Hello. I haven't tried the Ativan, but my step-father who is a doctor highly recommends it. He can't prescribe it for me, we are in different states and he is retiring; and my current cardio isn't sure about it. Nonetheless, when I was diagnosed with POTS my step-dad said the Ativan works wonders for most people with NCS and/or POTS. He said a 0.1-0.5mg 2-3 times a day is non-addictive, doesn't give the undesirable side effects, and really takes care of the dizziness and fast heart rate. So if it works for you, I would stick with it. However, I have no experience with any of the benzo's you mentioned...so I am just giving you my two cents from what my step-dad (a doctor of nearly 40 years) has told me. Of course your personal doctor and you are the only ones who can make the appropriate decisions for your care. Either way, take my two cents as you will.

No disrespect to you or your step father, but all benzodiazepines at any daily dose are potentially addictive. I think before giving this group of drugs that have done so much harm to so many people all over the world a clean bill of health one should investigate far beyond a doctors thoughts on the matter. These drugs work with the Gaba receptors and rearrange several other neurotransmitters to accommodate them. The result is always having to up the dose weather its within a few months of years, each person is different. Theses are serious drugs and I know first hand the damage they can cause using them long term. Short term they can be a blessing, long term they can be pure ****. You dont want to deal with withdrawal from benzoes, trust me! For more info try www.benzobuddies.org and go to the fourms. Best of luck, God Bless...

[lieze]

Thanks for pulling this post up godslyric I have enjoyed reading it.

I've found my Xanax seems to help more than anything else I've tried but I try to not take it any more than necessary.

[mvdula]

Klonopin works for me. I take 1/2 of the .5 pill....occasionally, because I don't want to deal w/ tolerance/addiction/withdrawal. I second what Maxine said about somehow breaking a cycle. This seems true for sleep and symptoms - if in a bad bout of sleep (not often for me), I'll take one one night and it will be fixed for a long period of time. Also, seems to work this way for symptoms.....helps at the time, and seems to break the cycle so the ANS relaxes for way longer than 1/2 life of med - like days??? Don't understand this, but I like it. Never tried any other benzo. It takes me probably over a year to finish a (30?) pill Rx of .5

[ramakentesh]

They are never prescribed in australia for dysautonomia so I wouldnt know.

There is evidence that constant elevated norepinephrine and epinephrine levels may be desensitizing beta 2 receptors in a subgroup of patients with hypertensive responses to stress and orthostatic challenge so benzos may have a role yet.

[firewatcher]

I take Klonopin three times a day (.75mg in divided doses.) I have had to up it once in two years, but the other meds just don't work as well without it. Is it addictive? Most certainly, but then so is food and gambling if you are prone to addiction. Withdrawal is HORRENDOUS! I have had to come off it twice for ANS testing. It takes six weeks or longer and it is painful. I would prefer not to take anything at all, but I have a better quality of life and greater functioning on it, so I continue. Like all drugs, it needs to be used with caution and monitored by a doctor.

[lieze]

Wow it breaks the cycle here too.

I can take 1/4 of a tab of my Xanax 0.25 and seem to be good for three days or so after I take it.

[kayjay]

I take a whole or a half of a .5 Klonopin every night. It help me more than any other drug. If I don't take it my nighttime adrenal surges are unbearable. I never take more than one a day. I have been taking it for a year and my doctor sees no reason to stop. I have not had to increase the dose. I prefer Klonopin to Ativan.

I thought about stopping just to make sure I could but since it helps me I see no reason to.

[ramakentesh]

my cycle breakers are beta blockers or a couple of beers - so perhaps a benzo would be a better option...