Neshema1 Posted March 30, 2011 Report Share Posted March 30, 2011 Hi friends-Does anyone have a journal (preferable) or book citation on value of using klonopin or benzodiazeprines especially for hyperandernergic pots? My NE levels are over 1600 & my doc suddenly outta nowhere decides to cut my dose in half. No taper. I was just in Hosp for pots complications, although docs think might be more than pots even, its like msa with high Ne & severe tachy. What is progressive pots??? Anyway, my whole life is really affected. Not my bag, but klonopin helps me so much, especially at night. Ok I'm one of the seizure ppl here, & my &$%# doc (no one in dysautonomia world) suddenly decides to lower dose.,he can check my drug records ; I NEVER overused anything.,I don't drink. Im super compliant. So kind of weird. Asked me if HE's been prescribing it. I'd think I'd have a chart. My dysautonomia docs are fine with it but i feel strange asking EPs fir klonopin or headache meds, & so I am wOndering if u use these meds, what kind of doc. Do u have an autjomix doc that u get everything from or do u have a team? I can't find primary care doc who doesn't have a panic attack upon seeing my records! Please advise me. Thanks so much! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 30, 2011 Report Share Posted March 30, 2011 Abruptly cutting the dose in half could bring on withdrawal symptoms. This might not happen, but why risk it. I'd find out the reasoning behind this and see if you can be tapered more slowly. Why are Doctors still doing this with all that is now known about benzodiazepines... Quote Link to comment Share on other sites More sharing options...
Neshema1 Posted March 30, 2011 Author Report Share Posted March 30, 2011 Hi NaomiNo clue. Maybe doc had problem with another patient. Regardless, i can't find a citation on use of benzodiazeprines withe hyper piots..I need a reputable journal citation. Thanks! Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 30, 2011 Report Share Posted March 30, 2011 Neshema,This is from the main page of this site:Benzodiazepines, such as Clonazepam (klonopin) or alprazolam (xanax), are not used as a first-line of treatment and can worsen tachycardia and hypotension. However, they may be helpful in select patients. Klonapin has been shown to be effective in the treatment of some patients with neurally mediated syncope (Kadri, Hee, Rovang, Mohiuddin, Ryan, Ashraf, Huebert & Hilleman, 1999). These drugs are central nervous system depressants. They are thought to enhance the effect of gaba, an inhibitory neurotransmitter. Benzodiazepines should be used with caution, as they are highly addictive. Some physicians do not advocate their use. Perhaps that article will say something. I take Klonopin daily and it helps my headache tremendously. My GP told me to taper off in no less than 6 weeks, preferably 8-12 weeks, and absolutely NO abrupt stopping! My neurologist put me on it and I know it is mentioned in several articles, but I'm not sure which ones. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 30, 2011 Report Share Posted March 30, 2011 Here is one article on Klonopin and headache, don't be put off by its reference to anxiety disorder! POTS is something that is incredibly close PHYSICALLY with anxiety disorder. My neurologist tried several meds for my daily headaches and Lyrica worked well, but it was too short acting. Clonazepam worked and so we stuck with it. Clonazepam for headache Quote Link to comment Share on other sites More sharing options...
Neshema1 Posted April 1, 2011 Author Report Share Posted April 1, 2011 I showed him the blurb from dinet & he said didn't mean anything cuz from a support group site. I may have missed it, bur couldn't find who wrote it ( eg one of the pots docs or a direct citation supporting use of klonopin with hyperandernergic pots. As for headaches, I meant what other drugs do ppl get for headaches & from what docs do u get controlled substances? I only can tolerate fioricet or phrenilin (fioricet without caffeine). I never over-used any substances & don't drink. But I'm ready to bite the bullet rather than depend on anyone for controlled substance. Seems there have to be too many cooks in kitchen cuz no one doc feels qualified to handle a complex case. So, although my EPs are great, I'm frustrTed that I have docs of several specialties & most of team communicates or they get booted, but still my gi doc, for example, really great & helped me, but not autonomic specialist & sometimes puts me thru unnecessary tests to cover her u know what. So, when it comes to treatment & ur complicated, their licensure means more than my health...and they won't read journals. We gotta educate them, as u all know. So, I'm just considering going off any controlled substances, regardless if they help or not. Cuz I'm still really doing poorly (well I'll be really even worse.. There's a reason I went on meds in first place), because I'm in one of those stages where I'm tired of dealing with docs. Maybe my neurotransmitters will adjust & I'll just end up where I am. It seems like the only things that keep working are IVs. Clonodine, & Domperidome (well the last one just prevents total disaster). By the way, another potsy told me miralax is made out of antifreeze (as in for ur car). No way!?!? If that's true, no wonder we r sick.. I hate to think of what's in my other meds! I'm so close to getting off my meds, even though I'm normally the type who will fight & go to pluto for help. I'm sick of it. I'm tired of being so severe my docs keep thinking something else is going on. I'm tired of asking for help & feeling lucky to take a shower on occasion. Ok, I'm just in a phase cuz my neurotrabsmitters are in total state of confusion. Well, despite klonopin withdrawal I finally slept & couldn't sit up all day. Thank goodness for iPhones! Going back to sleep. Pleasant nightmares! I don't recommend abruptly stopping or cutting dose in half if u take benzos. Too bad. They really help hyper pots. Not sure what I'll do. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted April 1, 2011 Report Share Posted April 1, 2011 Neshema,I am sorry that your doc yanked you off the Klonopin, it was totally irresponsible! I have had good luck with an acupuncturist that uses the Japanese contact needling techniques---NON insertion. It doesn't stimulate the sympathetic nervous system like an inserted needle does. I have managed to cut down on my klonopin to .125mg twice a day. I am going to try to come off totally soon and see where I am with all my meds. For sleep, melatonin works well for me as long as I take my morning beta blocker. Good luck and KNOW that you are not alone in this! Quote Link to comment Share on other sites More sharing options...
Neshema1 Posted April 2, 2011 Author Report Share Posted April 2, 2011 Thanks for support. I'm having seizures today. Bp all over map, Quote Link to comment Share on other sites More sharing options...
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