i went to my doctor today, in order to deal with the next in line of my most debilitating symptoms - the panic and facial flushing. i think that the toprol is doing a pretty decent job of keeping the ist under control, but still have a long way to go to get comfortable.
so my doctor prescribed me effexor, and indicated that it could help stabilize blood vessels, and help with the flushing and hot flashes, and is also used for anxiety.
sounds great to me, but i believe my problem with the autonomic stuff is related to complications with perhaps too much norepinephrine. i have had my catecholamines tested, with normal levels, but my cardio thinks that i have hereditary norepinephrine problems.
if this is the case, would an snri be a good choice for me? could it end up causing more anxiety and problems, than helping?
also, my doctor told me that effexor can cause heart palpitations. why? it isn't a stimulant, is it? this isn't exactly what i am looking forward to, considering my palpitations are about as bad as i could possibly imagine.

what can anyone tell me about this drug, and its affects on dysatuonomia, especially if i do have norepinephrine problems?

i suggested clonodine to my doctor, which i have also read is great for anxiety and flushing, probably even better, and he told me that it is a last-resort type of drug because it will knock a person out. what are your thoughts on that?

also, are there any other drugs that you guys find to be wonderful in helping you? i have heard a bit more on klonopin, but am not sure that is a great option for me either, as it sounds really addictive.

Here is a site that can give you some more detailed information on this drug.

http://en.wikipedia.org/wiki/Effexor_xr

rosie - you are on clonidine? it has helped? how long have you been on? what has it helped with? have you tried others, like ssri's or snri's, or benzos like xanax?

misty - thank you! i actually read that site, but i am not sure that it was written for us dysautonomic folk, so i worry a bit of the effect it would have on someone like me!

I just posted a new thread about a site that had information about POTS on it and this was in there:

Antidepressants
Antidepressants, especially selective serotonin reuptake inhibitors (SSRIs) such as Prozac, Zoloft, Celexa, Lexapro, and Paxil, can be extremely effective in re-regulating the autonomic nervous system and raising blood pressure. Some studies indicate that serotonin-norepinephrine reuptake inhibitors (SNRIs) such as Effexor and Cymbalta are even more effective. Tricyclic antidepressants, tetracyclic antidepressants, and monoamine oxidase inhibitors are also occasionally, but rarely, prescribed. A combination of two antidepressants, usually an SSRI or SNRI with Wellbutrin or Remeron, is also shown to be very effective.


And it says in there that effexor is effective in treating POTS. You can go to that thread and read the site if you like to get more information.

interesting. well, i will give the effexor a chance, and then consider the clonodine. the clonodine sounded like a better option for me, because i desparately want to get a hold on the flushing as best as possible, and i know that clonodine is often used with rosacea treatments. plus, i could definitely use help in controlling the panic.
i did read that effexor is supposed to "re-set" the autonomic nervous system, and that dr grubb likes to prescribe it. so perhaps this will help. i get nervous taking medications though that have panic attacks, palpitations and nervousness as a side effect (even though effexor is supposed to help anxiety), because i tend to react strongly to medications that may "up" a person.

Gracie, could you tell me where you read about Dr. Grubb and effexor?

Thanks! (and good luck with trying it... I'm going through a similar process of trying to figure out which to try right now!)

I didn't do well with effexor - it gave me migraines and chest pain. But then again I haven't done well with any of the ssri's since I got sick either...and everyone is so different. So it could be worth trying at least.

JUST as i feared. i am just now finally coming down from what has definitely been side effects to the effexor. i have spent the last two hours with a heart rate over 200, extreme panic, i'd say it crossed over to mania, body temperature that shot up to 102 (normally at 97), and largely increased blood pressure. i don't know if this was a panic attack, or the way that my body is handling a medication that is promoting norepinephrine. either way, it has been a HORRIBLE experience.

i did read that it can cause an increase in panic attacks initially, but i am terrified to even give it another's day try. assuming that i don't continue to have more terrible reactions that land me in the ER. is it normal to react this strongly??? my vitals were all over the place! my reaction seemed incredibly more intense than a panic attack (i've had plenty of those before). has anyone reacted this way? what do i do?

i am still having an EXTREME reaction. my heart rate and blood pressure are still high, and now i am having lots of diarrhea. i am waiting for my doctor to call me back because this does not seem like a normal panic attack for me. and it is not going away. i am certain it is the medication, but i do not understand why this is happening. the side effects i am having are not common with this drug.

ok, trying to remain calm (which is impossible!). i'm dressed and ready to go to the ER, but would really appreciate if my doctor could take five minutes out of his non life-threatening cases to call me back! Ah!

thanks for checking in, rosie. i am okay. i didn't go to the ER, and just waited it out. everything passed in about three or four hours.

my doctor wonders if i didn't have the beginnings of serotonin syndrome, a potentially life-threatening condition usually caused when mixing an snri and a mao inhibitor. we have no idea why this would have occurred, but the symptoms of especially fluctuating vitals, diarrhea, and an increase in body temperature seem to fit.

this was an incredibly odd reaction, and i really wonder what is going on. i read that most dysautonomics react really well to snri's. i know my cardio suspects i have norepinephrine problems due to my unusual response during the TTT test, and this seems to add to the suspicion.

i feel bummed that this drug didn't work out because i had such high hopes. i have got to do something about the anxiety and the flushing, and this was intended to help with both. i fear if i react this way to this drug, i will to all others of this kind.
however, i also learned that effexor is supposed to have HORRIBLE withdrawal symptoms, the worse of any of this kind of drug, and that people often wish they had never taken it, no matter how successfully it treated their problems. so perhaps this is just a blessing in disguise.

anyways, needless to say, my doctor told me to absolutely not touch the effexor again. so fortunately i made it through that crazy episode, now it's on to the next step!

thanks for your concern, rosie. it was very comforting to know i wasn't completely alone.

i'm not sure i completely understand, rosie.

i thought that snri's were meant to promote norepinephrine levels, which means that your description makes sense. if they are narrowing or closing the "in" door, then there would be more ne, right? but wouldn't that be the point of the drug? since ne is the parasympathetic chemical, which is meant to calm. so i'm not sure where this fits in with the reaction that i had. especially because two 24 hour urine tests have indicated that i have very normal catecholamine levels. so if my "in" door was closing, wouldn't i have measured higher levels?

another thing is that i read, not sure if this is accurate, that the norepinephrine portion of effexor doesn't take effect until higher doses are administered. i started on the "starting" dose of 35mg, which is actually only 1/2 an actual dose. the intent is to work one's way up to 75mg, the smallest dose, then most people end up taking around 150mg. this is when norepinephrine kicks in. sooo, if this is the case, then does this mean i was affected by effexor b/c of serotonin? and if this is the case, why? and, does that mean no ssri or snri would work for me?

sorry so many questions! just very curious why this happened!!! and this whole crazy process. very good explanation though, rosie, of the hormones. totally understand what you are saying, i just don't think i understand what norephinephrine reuptake inhibitor is implying.

Sorry it didn't work for you and that you had to go thru such a frightening experience. You are right about the withdrawals. I took effexor xr years ago. My doctor started me out on 1/2 an adult dose for a month. I started having involuntary leg movements and other strange side effects, so they took me off....cold turkey. What a night mare! It took me over two weeks to get off and was bed ridden during that time. At one point they thought I was having a stroke and sent me in for emergency brain MRI, thankfully they were wrong. I guess it's better to have a bad reaction now than later. Hope you are better tonight.

Gracie,

I'm really sorry to hear of your reaction. What a bummer (understatement!). I obviously wouldn't try another SSNRI if I were you, but it may not be in your interest to eliminate all SSRI's... they all truly work in different ways and you may miss something that could help you.

Just a thought..