Benzos And Ssris And Dysautonomia -- Better Or Worse?

[lynnie22]

I've been on ativan for years, primarily to help with sleep, and trying to get off them for years. Have read here that many find them helpful with the high HR, etc. And reverse. At Mayo I was told that benzos may actually be aggravating my pots. But it's **** to get off.

I have also been told by my CFS doctor that SSRIs have been proven to really help with POTS symptoms. About to try one. I've read for some of you that has been the case.

Any experiences either way?

[ks42]

I can't comment on SSRIs (haven't tried them yet), but benzos have been miracle drugs for my POTS - didn't make my orthostatic issues worse at all - in fact, I really do think it made them better. Before the Klonopin, I was in "fight or flight" mode all the time, and even something as simple as having more than one person around me at a time, or having any activity go on around me would send me into a storm of high BP, adrenaline surges, severely erratic heart rate, and tremors. I also had issues swallowing, eating, and digesting my food (we ruled out allergies on that). I also couldn't sleep more than an hour a night (also adrenaline related) and was hospitalized a bunch of times for autonomic storms.

We tried the usual beta blockers, calcium channel blockers, mast cell meds, etc but they all made the problem worse. We then found out that my epinephrine was severely and chronically elevated (whether lying or standing), which meant I wasn't a candidate for hyperPOTS meds as those meds target norepinephrine, not epinephrine. So we tried Valium - that helped a bit. We switched to Klonopin, and I started sleeping 8 hours a night, was able to eat, no tremors, could tolerate people, activity, etc without jumping out of my skin and having adrenaline surges.

It didn't cure the POTS, but heart rate before Klonopin was 90bpm laying down and almost 200bpm standing up. After starting Klonopin, my resting heart rate dropped into the 70's and my standing heart rate dropped down to 130(ish). Because I have the type of POTS where my BP actually goes up when I stand, the Klonopin has actually kept my BP in a very nice, normal range too. I still have adrenaline surges, but not as badly.

I've been on it for a year, and it's stopped working for sleep, but still keeping my other symptoms under control. I'm not looking forward to weaning off, but that might not be for awhile as it's so helpful right now still, and I definitely don't regret taking it in the first place. I've heard a lot of POTS patients say benzos caused their symptoms to worsen horribly, though, so I guess it's pretty individual.

[Becia]

Ssri's we're the worst for me. I ended up being hospitalized twice because of them, the last time in a serotonin storm that was making me have a ton of problems. I'm currently about to try an SNRI trial to see if that will help with my syptoms as well as my depression. I've been given Ativan for my tachycardia a few times, usually when my vertigo is acting up as well as my POTS flaring, but never realized it changing anything much.

[LillyBee]

I can't comment on SSRIs (haven't tried them yet), but benzos have been miracle drugs for my POTS - didn't make my orthostatic issues worse at all - in fact, I really do think it made them better. Before the Klonopin, I was in "fight or flight" mode all the time, and even something as simple as having more than one person around me at a time, or having any activity go on around me would send me into a storm of high BP, adrenaline surges, severely erratic heart rate, and tremors. I also had issues swallowing, eating, and digesting my food (we ruled out allergies on that). I also couldn't sleep more than an hour a night (also adrenaline related) and was hospitalized a bunch of times for autonomic storms.

We tried the usual beta blockers, calcium channel blockers, mast cell meds, etc but they all made the problem worse. We then found out that my epinephrine was severely and chronically elevated (whether lying or standing), which meant I wasn't a candidate for hyperPOTS meds as those meds target norepinephrine, not epinephrine. So we tried Valium - that helped a bit. We switched to Klonopin, and I started sleeping 8 hours a night, was able to eat, no tremors, could tolerate people, activity, etc without jumping out of my skin and having adrenaline surges.

It didn't cure the POTS, but heart rate before Klonopin was 90bpm laying down and almost 200bpm standing up. After starting Klonopin, my resting heart rate dropped into the 70's and my standing heart rate dropped down to 130(ish). Because I have the type of POTS where my BP actually goes up when I stand, the Klonopin has actually kept my BP in a very nice, normal range too. I still have adrenaline surges, but not as badly.

I've been on it for a year, and it's stopped working for sleep, but still keeping my other symptoms under control. I'm not looking forward to weaning off, but that might not be for awhile as it's so helpful right now still, and I definitely don't regret taking it in the first place. I've heard a lot of POTS patients say benzos caused their symptoms to worsen horribly, though, so I guess it's pretty individual.

That sounds a lot like what happens to me. I also take Klonopin and it helps to a degree, but when the "storm" hits, it's like taking a TicTac. After a horrible tilt test (didn't make it 1 minute, my BP and heart rate went so high) my doc said you need to be on meds before you have a heart attack or stroke. So, I am now taking 1 mg of Clonidine 3x a day. It makes all of the difference. BTW, I take an SSRI, mast cell meds and pain meds, but none of them stopped the hyper response.

[statesof]

I take xanax if I have really bad chest pressure but combined with an extra verapamil, I typically try not to use it very much just because its not really great for you, but on those days where my symptoms are too out of control it is nice to have. It doesn't really effect my hr or bp very much. I think its effect on your symptoms will be different person to person, I don't take xanax enough to go through withdrawal, but have read of other members not realizing it worsened their symptoms until getting off it it, and other members still whos symptom's were more controlled by taking benzos. Overall its not exactly a good drug to be on long term, so maybe going over different medication options that might be able to help your specific symptoms might be something to discuss with your doctor.

[lynnie22]

Thanks for your responses. It's so interesting how we all react so individually.

ks42 -- It sounds like benzos have helped you ALOT and that the klonopin has actually also helped your bp. I have been on ativan for years, before I knew about the pots, and the sleep clinic at mayo they said I had these abnormal waves because of them, so wanted me to get off. Hard to know if it's helping or not.

Good luck Becia on the SNRI.

It sounds like the benzos have helped you all more than the SSRIs, and I guess it's a matter of trial and error, with a lot of both. I really would like to get off the benzos because they aren't really great for you over the long term with memory, etc., but I guess you have to weigh the pros and cons.

I am going to try a small dose of an SSRI and also probably something to knock me out at night so I can slowly lower my ativan dose.

[DizzyGirls]

This discussion is really interesting. My daughters have been on either ativan or diazepam for the past year and a half as they had/have horrible vertigo. They still have the vertigo, but it is kept in control with the benzos. Every time we try to back off a little, they get even dizzier than they are now. So, for us, it's helping, not making things worse. We are actually going in for an appt. with the PCP this afternoon to get referrals for them to the Autonomic Clinic at Stanford. I was hoping to talk the doctor in to trying some Florinef on them while we are waiting to get in (I hear it takes months). Not sure if my oldest has hyper POTS or not. That was a concern for her. My youngest has made a little improvement with her high salt diet and lots of fluids. But, they both need some more help, as trying to function at any rate of urgency just sends them for a loop.

KS42 - commotion is still a problem for my girls, my youngest especially. Too many people talking, loud music just sends her into a frenzy.

Does stress tend to make everybody worse or just those with hyper POTS? Still trying to sort which things could be a hyper POTS symptom or just basic dysautonomia.

[SarahA33]

Dizzygirls, I have pots with a hyper component and have very high catecholamine levels, especially when standing. My first tilt table years ago showed levels close to 2000. I can feel as though I am in the "flight or fight" response.. a door shuts too loud, the movie theater is out of the question because of the noises and visual effects are much too exaggerated for me, i don't do well with large crowds of people as the commotion around me sets off a chain of events caused by an increased production of adrenaline. I have been diagnosed with a primary anxiety disorder, and then a secondary anxiety disorder because of the hyper pots. If i feel anxious about something in general, my response is much greater due to the adrenaline spikes.. Ny heart rate doubles, i start to have tremors, i turn different shades on my trunk and face of reddish or purplish color, and its really hard to calm myself down.

What's worked the best for me has been Ativan, Propranolol ( to block to the adrenaline), and clonidine (for the norepinephrine and blood pressure control)

I wish you and your family the best of luck! Take care, Sarah

[DizzyGirls]

Hi Sarah!

About 6 months ago my youngest (almost 17) started turning reddish on her trunk and face! She had a really hard time around Christmas, hospital stay the week before Christmas to insert a feeding tube because of gastroparesis. (Btw, feeding tube is out now!) She developed these symptoms then (obviously a tremendous amount of stress). It happened spontaneously for several months and now it's just when she eats and in the shower. I did read about this phenomenon happening to POTS patients. I'm beginning to wonder if both of my girls have hyper POTS. There are a lot of things that happen that indicate to me a lot of adrenalin going on. Neither are hyper-active people, but their bodies seem to be saying otherwise. All the symtpoms you have trouble with, my girls do too. Our very dear PCP took a lot of notes today and prepared a letter for each of them to the Autonomic Disorders Clinic at Stanford to see Dr. Jaradeh. No Florinef Rx, though. Just didn't feel comfortable prescribing that one yet. Said he would let the experts handle that one. I can't blame him.

Thanks for sharing your thoughts!

[LillyBee]

Like SarahA33, I am in constant fight or flight...for me, it happens to be "fight". I am easily agitated by sounds, lights, movement, weather, stress, etc. I have a constant hum of anxiety and when I am triggered, I have a full on "someone is attacking me" physiological response. I have extreme panic and hostility, my BP and HR shoot way up, face and neck flushes and I immediately get hyperadrenergic hives on my face and neck. Initially, I hyperventilate, then I have to "remind" my body to breathe. Finally, I either have near syncope or this sort of forced sleep thing where I had to sleep regardless of where I am or what I am doing.

It sounds extreme, and had I not been a therapist for years before I became ill, I would have chalked it up to PTSD (which was one of my diagnoses), and continued to try and treat the symptoms that way. Unfortunately, no amount of talk therapy, anti-depressants or benzos stop this reaction. They all helped to a degree, but I kept getting worse, not better. It wasn't until I took a therapeutic dose of Clonidine that I was able to reduce the frequency and severity of these attacks. They aren't gone completely, but they have improved. What's more, I have a much better understanding of what's happening to my body. And while understanding doesn't stop the attack, it helps me not have extra fear about it.

Sending good thoughts to you and your girls

[shan1212]

I was on Zoloft for a few years. It did provide some mild/moderate improvement to my POTS symptoms, but long-term I didn't see it adding enough value to continue on it. I wanted to feel like myself and have my libido and whole range of emotions back. I've been completely off it for a month and haven't seen any real increase in POTS symptoms (I weaned off slowly). Maybe some increase in fatigue but that could also be the weather. I'm glad to be done with it.

[Christy_D]

_{Klonopin gave my son his life back. It helped his nausea tremendously, but it wasn't prescribed by his POTS doctor...it was prescribed by his MCAS doctor specifically for the nausea. It didn't cause any flare ups on his POTS at all. While he still has nausea, it has greatly diminished.}

[lynnie22]

I have to say that this is all very interesting. I am also at times very sensitive to sounds and too much activity. I get spikes in catechomine when standing too, much not near to your levels, Sarah. I also have tremendous problems going to the movies, haven't been in months, restaurants, subways out of the question (along with the stairs). For me, Ativan in these cases helps, as does propanalol but not consistently. Good luck, Dizzy Girls, with their appointment. I had 9 months of vertigo many years ago. I think ativan was first prescribed to me then and it helped back then.

I'm going to try with an SSRI and see if it helps with some of my symptoms.

Anyway, wishing all of you well.

[ramakentesh]

They an help with overstim but not dizziness in my experience.

[jingles1987]

Hey,

I can totally relate to the getting off of benzos they are a nightmare. I was on Xanax for sleep for about a year and had to go off because my body started tolerating it and my dr had no idea about the withdrawal. Thankfully he trusted me so he worked with me to gradually go off but it was still awful.

I am on week 1 of lexapro and not doing well. All my pots symptoms have increased and it's not been fun. I'm hoping my body will adjust but I'm contacting my dr tomorrow to get feedback. I know it's been said that you adjust after a few weeks but for me it's been awful. Nausea, dizziness, headache, anxiety; you name it.

I think taking ssris and benzos are a matter of whether the benefits will be worth it for you. For awhile I could tolerate the symptoms but the anxiety got really bad so now I'm on Xanax and lexapro.

Good luck!

[lynnie22]

Hi Jingles, Good to hear I am not alone with the withdrawal and tolerance factor. I haven't begun withdrawal, just don't want to be hooked anymore, and they have stopped working to help me sleep the way they used to.

Good luck with getting used to the lexapro. I believe in starting very small -- with lexapro which was helpful to me for a short time before I had pots or between episodes I was on no more than 10 mg and that's where I stayed for the three months I took it. Now I imagine it would feel really different. The benzos don't bother me but I can't stand being so dependent on them and having built up such a tolerance.

What caused the anxiety to get really bad for you?

[DizzyGirls]

I was wondering, has anyone tried oral lavender to help with anxiety? I'm not a big "natural medicine" person, but if it works, you don't get addicted to it, and there are no withdrawals from it, then I was considering giving it a try. I don't think it would help my girls with their vertigo, but maybe with the anxiety. A medical professional recommended it to me. I also was wondering if it would help with the anxiety that happens from withdrawals of benzos. Any thoughts? I haven't done my usual research on this, was just curious if it could possibly be an option.

[Katybug]

Interesting you bring this up DizzyGirls! I just bought some Lavender essential oil to use some at night (just on my skin) to see if it helps my brain slow down enough to fall asleep easier. I'd be in tested to know if anyone has any experience as well. I have used it as aroma therapy for my dad's old dog and it did help soothe him in circumstances that made him anxious such as thunderstorms and fire works. That actually what made think of giving it a try.

[Becia]

I love my essential oils! I wish lavender didn't give me such bad migraines though

I met with a pain management doctor yesterday, who prescribed me Effexor to give it a trial run. Picked up my script last night, but will not take it until tonight/tomorrow, because I'm a little bit paranoid of side effects, and prefer to be at home with people around me in case of reaction, but I'm a bit hopeful this will help with some of my neuropathy pain as well as my depression.

[headhunter]

.25 of Xanax (hate to be on it) every morning makes my mornings bearable....and I was on Paxil twice...it made my symptoms much better, but it made the symptoms worse while I was adjusting to it for about 4 weeks. But. the Paxil made me gain 20 lbs very fast. But my sleep got better and my weakness went away somehow.

[Becia]

I'm currently in the hospital thanks to side effects of Effexor. I was already in a bad enough flare that I was looking at going back to a nursing home for extra help and rehab, but The short time j tried he Effexor, it's a no go. Made everything 100000 times worse for me, I haven't slept in two months. Today, the nurses watched me sleep, and it's like j got five minutes, and then my body jerked awake. They gave me some Ativan this afternoon to help calm me down because I just lost it and couldn't stop crying from the pain and frustration, and it worked for a short time, they gave me a larger dose to see if it might help me sleep... I got 30 minutes. About to try again.

Frustrating is not even the word for how I feel right now.

[Katybug]

I'm sorry to hear you continue to have such severe symptoms, Becia. Sending good thoughts your way.

[Becia]

Thanks Katie, I appreciate it. Just another bad flare up that I can't seem to crawl out of. I'll get back to my "normal" again soon.

[headhunter]

Effexor was the devil for me--didn't last 2 days--tremors even...did u try Paxil? For me really relaxed my body and symptoms....would like to taper off the Xanax, but it beneifts me too much now

[Becia]

I was on Paxil for several months at various dosages, and it was horrible. I ended up with serotonin syndrome because of it, in the hospital for four days after five different ER visits. Tremors on both Paxil and Effexor.

It seems the Effexor did the opposite of what we we're wanting it to do (help with chronic pain/neuropathy, as well as depression). With any med, I try to give it a month before I say no more, but after only 10 days on the Effexor, I went to one of my doctors appointments, the nurse, and two doctors looked at me and high tailed me to the ER for admittance. Serotonin syndrome all over again, and it was for sure making my depression extremely dangerous.

It took me about nine or so weeks to clear the Paxil from my system, they are expecting the same with the Effexor, and I tell ya, that is not fun. No amount of Zofran seems to be quelling my nausea/vomiting, I'm still not sleeping at all, and pain is at an all time high.