Having A Hard Time, Need Some Advice

[southbel]

Not sure what I can do and neither is my doctor so seeking any advice. My cardio is a great guy but I've just not had a lot of relief and in the last two weeks, I have gotten substantially worse. My big problem now is waking up each and every night at 2 am with what I can only describe as adrenaline rushes (based on the descriptions I've seen here). It's an absolute misery and lasts for about three hours. I've noticed during these episodes each night that my blood pressure seems to go all over the place. I've tried no caffeine at all during the day, relaxation techniques, sleep hygiene, etc, etc. Nothing has seemed to help.

I've been pretty much housebound for a few weeks due to both extreme tiredness from not sleeping and crazy tachy when I get up and around. So fast forward to today, I'm bringing my daughter into an ENT appointment. As I'm sitting there in the waiting room, I feel my heart start going bad tachy (~160). I am trying to stay very calm since I'm with my daughter and don't want her to worry. Go to text my husband to come to the appointment and of course I forgot my phone in the car! Luckily my daughter had hers with her. Texted my husband and he was there within 10 minutes. I really do love that man.

Anyway, my cardio's office is literally across the hall from the ENT's and my husband told me to go over there, just walk in, and tell them what was going on. Apparently by this point, I looked pretty bad, pale with bright red splotches on my face - not very attractive. Surprisingly, they went and got the doctor right away and got me back as a walk in. As a side note, have to say that shocked me. Anyway, did an EKG and he said it was sinus tachycardia, which is the usual for me during one of these episodes. Only thing he could think of was to up my Metoprolol from 12.5 mg to 25 mg per day.

Tried to get me a holter monitor but they were already gone for the day. Said for the evening adrenaline rushes, to drink Chamomile Tea and take 3 mg of Melatonin. Have any of you tried this? Did this help or do you have any recommendations? He wants me to call him in the morning to get the holter monitor and let him know how I'm doing. Of note, I tried one Unisom last week and it only earned me a trip to the ER because it made my tachycardia SO much worse. Seems since I started with POTS, I suddenly can't take medications without having a reaction.

ANY help you can provide would be greatly, greatly appreciated. I really don't want to be the lame mom sitting on the couch all through Christmas and darn it, I need some sleep already!

[Chaos]

Can't remember if you've tried clonidine or klonopin before?

This discussion has some info regarding sleep and klonipin etc that you might find helpful before you talk to your doc tomorrow.

Hope you get some relief.

[Katybug]

If you blood sugar is also going wacky at these moments, have you tried eating some peanut butter or some cheese right before you go to sleep? I know eating before sleep is not a popular idea, but, I often wake up feeling awful with shakes and hot flashes if I don't eat something that will stabilize my blood sugar right before sleep. If I am eating PB I also sprinkle cinnamon on it...it's yummy and another natural way to regulate your blood sugar. I just found an article last month that explained how low or high blood sugar winds up your sympathetic nervous response. It might be worth a shot. Hope you feel better soon.

[southbel]

Can't remember if you've tried clonidine or klonopin before?

http://forums.dinet....tried-mestinon/

This discussion has some info regarding sleep and klonipin etc that you might find helpful before you talk to your doc tomorrow.

Hope you get some relief.

No, the only thing they've really tried are Beta Blockers. The first, Propranolol, did not agree with me at all. I know my cardio is pretty open to suggestions since he encourages me to research and find out what other POTS patients are doing.

Thanks for the suggestion - I need something because this adrenaline thing is getting to me bad.

[southbel]

If you blood sugar is also going wacky at these moments, have you tried eating some peanut butter or some cheese right before you go to sleep? I know eating before sleep is not a popular idea, but, I often wake up feeling awful with shakes and hot flashes if I don't eat something that will stabilize my blood sugar right before sleep. If I am eating PB I also sprinkle cinnamon on it...it's yummy and another natural way to regulate your blood sugar. I just found an article last month that explained how low or high blood sugar winds up your sympathetic nervous response. It might be worth a shot. Hope you feel better soon.

Interesting. I've never really had my blood sugar monitored except when I was pregnant (gestational diabetes). I've never been one of those that can tell if my blood sugar is low or not but I know it's something I can test at home so it's worth a shot to eat a little something.

[potsgirl]

I take Klonopin (generic - Clonazepam) every night and it really works for me. I also take Trazodone along with it for anxiety, and perhaps you could ask your cardio about trying one or the other or a combination of both. Are you taking any anti-anxiety meds at all? Anything for depression? I remember that there are several people on the forum who take Paxil, Wellbutrin, or some kind of SSRI. It's helped me, but everyone is different, and you could ask your doc about these options. Hope something works soon~

[southbel]

I take Klonopin (generic - Clonazepam) every night and it really works for me. I also take Trazodone along with it for anxiety, and perhaps you could ask your cardio about trying one or the other or a combination of both. Are you taking any anti-anxiety meds at all? Anything for depression? I remember that there are several people on the forum who take Paxil, Wellbutrin, or some kind of SSRI. It's helped me, but everyone is different, and you could ask your doc about these options. Hope something works soon~

No, the only thing I'm on is the Beta Blocker. Cardio said that should help with the adrenaline. I think he's very sensitive to me taking anything that would be prescribed for anxiety because he keeps telling me, over and over again, that this is not in my head and is not anxiety. I imagine someone somewhere wrote something pretty nasty in my medical record since he seems so emphatic about it. Given some of the doctors I've seen just plain sucked, I can only imagine. At this point. I do NOT care if they can just get it to stop. It's just past 2 AM and here I am again with the shaky feeling, heart feels like a fish flopping in my chest, and just hating it.

Oh and for the record, the Melatonin and Chamomile tea just aren't cutting it. Tea kinda made me nauseous actually.

[Chaos]

I can appreciate (very much!) your doctor's support for you in saying this is not in your head and not a result of depression/anxiety. However, since the same neurotransmitters (Norepinephrine, epinephrine, dopamine) seem to be involved with POTS as are involved with those other conditions, it's a fine line to tread. He may inadvertently be avoiding some really valuable treatment options just to prove a point.

It's kind of similar to how I think they're using cymbalta and lyrica now for pain management when they were originally designed for depression kinds of issues as well. These systems are so complex when you address one thing who knows where the spillover effects will be.

Feel for you! SO frustrating to be feeling so badly and not be getting any relief!

[jenniferlynne76]

Southbel,

I experienced the same thing you did. Even after we worked with beta blockers and then the Mestinon I'm on now to get things some what regulated, I would have these massive adrenaline surges that would last anywhere from 2 to 9 hours! (Those were the worst!) Initially, we disovered that the combination of Ativan and the beta blocker did the trick, but then then Ativan stopped working. For almost two months I went through what you describe exactly (and mine almost always happen at night, which means I can't sleep). We tried everything.... I did a lot of research on here and talked to a lot of folks, including my neurologist and eventually we decided to give Klonopin a try. It's been a true godsend and can stop my adrenaline surges in their tracks. It also helps me sleep. For the last two weeks I've gotten a minimum of six solid hours each night. Please consider talking with your doctor about trying some of the Benzos (and I'd start with Klonopin...Ativan sort of worked, Valium did nothing, and Restoril sort of helped as well..). I honestly don't know what I'd be doing without the Klonopin. Best of luck to you and please keep us posted; I hope you feel better soon!

-Jen

[southbel]

Thanks y'all! I had a miserable night last night and will talk to my cardio again. I get what he's doing and think he's a really great advocate but at the end of the day, I'm not flipping sleeping and darn it, I need sleep. It really makes a difference, a bad one, if I do not get sufficient sleep.

He did say something about my epinephrine (or what is norepinephine??) levels or something like that and this is why I'm having that? I have the hyper form of POTS and from what I've seen on this board, the adrenaline rushes seems to be pretty common among that crowd.

It does make me pretty angry that other doctor's reactions to my POTS has ultimately caused my cardio to have this reaction. I mean, really, what ever happened to do no harm?? I think labeling me as a nutter (which I'm assuming here) by the other doctors has caused me harm. Now, I'm pretty curious to find out what the heck my medical record says if my cardio is having such a reaction.

[khaarina]

I had sinus tachy for over a year, it was exhausting! I tried various SSRI's and beta blockers and none of them helped much, if at all. I also tried many different things to combat the sleep issues and most of them didn't work. Then I was lucky enough to find a Cardiologist who has dysautonomia. It was totally by chance, I just happened to move near his office, so that is where I went. Anyway, Right now I am on 2.5mg Midodrine, 25mg Atenolol (beta blocker), and I take 25 mg benedryl at night. This is working for me so far. Since I started Midodrine my resting heart rate has been consistently between 60 and 80 (which is amazing), but I'm not supposed to take it at night.

The Benedryl keeps the adrenaline surges away so I can fall asleep easier and I have fewer episodes of waking up. I also try to eat something and drink a lot of water right before bed. Hunger and dehydration can cause a lot of problems. Benzo's are also helpful, but I try to avoid them as a long term treatment because of the possibility of dependency, withdrawal, and long term cognitive effects. However, they can provide much needed short term relief while figuring out what to do in the long run. I have been looking into taking Clonazepam just at night in case the Benedryl stops working. Maybe since it is just one dose a day there is a lesser risk of negative effects.

[southbel]

Benadryl has always made me fall asleep in the past. I could try that and see if it makes a difference in the adrenaline nighttime episodes. It's odd because the stuff I get at night feels quite different than the tachycardia I get during the day (from standing, etc). The stuff at night makes my heart feel like a fish flopping in my chest and a real jittery feeling, but my 'regular' tachycardia feels like my heart is fluttering/racing with accompanying shortness of breath, dizziness, etc. So far my Beta Blocker has been okay at helping with the daytime tachycardia. Not great but much better than I was. This adrenaline thing at night though has proven resistant to the Beta Blocker and the natural route that my cardiologist suggested.

A momentary rant here - I really, really, really hate this **** disease. My daughter and husband just went out to do our Christmas dinner shopping at the store. I was supposed to go. It was my task. And yet, I wasn't feeling well enough to go and I HATE it. I need to bring my daughter to the store so she can buy her father a Christmas gift. I have no idea how I'm going to do that tonight,. I want my life back, i want to be a good mother and wife. I want this to just go away already!!! Okay - rant over.

[Traceyf]

I already on Klonopin and a beta blocker and think thats why it took so long for me to be diagnosed. I think they were keeping this at bay until my recent flare was so bad. I was on a low dose of Klonopin .5mgs so they just increased it by half of that in the morning. It has helped tremendously. Increasing the beta blocker has made my HR really low...and I find that I am exhausted during the day. My blood pressure, however remains high.

I completely related to missing out on things and being a good mom...I have 3 grown daughters in their 20's and one 10 year old daughter. This past 4 months I feel like I am missing out on her life, and she is missing out on doing all the fun things...the mall, the movies..just having a mom who is not in bed all the time would help. I am also frustrated and feeling depressed over all of this...Im looking for a light...and not finding one...

good luck with your search for answers, I am hoping if I keep posting I will get some relief from that feeling of being so alone in all of this..

Tracey

[Joann]

Southbel,

I so understand your rant. I too have a daughter and am so frustrated and more, that I can't "do" Christmas like I used.

This is the first year I bought Christmas presents early, because I am so afraid I may be in the middle of an episode and not be able to get them later. Of course, because I am unable to work., I don't have much money to buy many presents either !I have changed our Christmas dinner to something more simple and have told my husband he will have to help.Hopefully, I will be ok tomorrow, because I have not bought our food for Christmas! LOL. Imagine Christmas dinner with takeout from the local Chinese restaurant. Of course, I have to avoid salt because I am hyper pots, so I would be limited on what I could eat, probably wouldn't have an appetite anyways if its the middle of an episode.' I also had to change the location of our Christmas, because I can no longer go downstairs to our finished basement, where our large living space is. My family can't find the Christmas stockings and I can't go down and look! It really *****. I did manage to buy the items to stuff the stockings, just no stockings. Ho Ho.

. But... at least we are both still here to celebrate Christmas with our families.

Sometimes it seems like the little things are what make us reach that breaking point. Who knew how much I would miss being able to go downstairs and do my families laundry? Or run down to the pantry to get my Christmas platters? I can't complain to my husband about my former white now blue shirt, because at least he is doing the laundry. One day we will laugh about these things right?

Still I am hoping one day we will all be able to celebrate like we want to.

I really do not have suggestions on medications for you, I am still trying to figure it out. But I have had awful reactions to both Lexapro and Celexa. I did try ativan and I don't have a problem with it, but it didn't really help me either. Right now the only things I take are an alpha and a beta blocker. It seems like every one is so different that what works for one person may not work for another.

I hope you get some sleep and that you are able to enjoy the holidays with your family.

[issie]

With you saying that you have red splotches on you when this happens --it sounds like MCAS to me. I had this happen to me at night too --until I started taking Allegra and Zantac and also GastroCrom at night. There is a major mast cell release that happens in the night. This could possibly be it. You can research some of the discussions on mast cell on this forum ---lots of information here.

Issie

[southbel]

With you saying that you have red splotches on you when this happens --it sounds like MCAS to me. I had this happen to me at night too --until I started taking Allegra and Zantac and also GastroCrom at night. There is a major mast cell release that happens in the night. This could possibly be it. You can research some of the discussions on mast cell on this forum ---lots of information here. Also, a girl in the UK has a very informative site about it. www.iamast.com

Issie

Would MCAS account for all the new allergies I seem to piling up of late?? That's another reason everyone is so fearful of giving me medicine. I've suddenly become very allergic to so many of them.

[issie]

It could. And Beta Blockers make us WAYYYYYY worse.

Issie

[bebe127]

Totally feel for you southbel, I don't get much sleep either. I have an intimate relationship with Netflix as I am so tired after dinner and go to bed around 8:30pm only to watch Netflix until goodness knows how late. Last night I fell asleep sometime after 11pm only to wake numerous times in a night-sweat (everything drenched). I don't recall anything weird about my heart rate or anything though. This happens all the time with me. I fall asleep sometime in the early morning hours (the other night it was about 3am and I remembering thinking, I'd better get to sleep before the hubs wakes up at 4am to go to work!!). I hate it. I don't understand it and I too want it to STOP NOW!!

Haven't really spoken with the dr. about my sleeplessness because their usual response is...let's put you on so-and-so, and I don't want to be taking anything else. As you can see I'm on Metoprolol and Xanax. They ususally do what they are intended, but I still get tachy and still feel like poop most of the time. Last time I went in to see him (GP) he wanted to increase the Meto, but told me that I could pass out, so my hubs and I decided that I would stay where I was at and simply try to "live with it". I have never passed out before and don't intend on starting now.

I too am really sensitive to different meds. I am so afraid to try something different. I was put on an SSRI a few years back and had a terrible "flushing" reaction that I wouldn't wish on my worst enemy. It is so hard to try to find what works. Don't give up though! Try to keep on keeping on; I know it is so hard. I know it is so scary, but sometimes we just have to try and hope for the best. Remember, what works for some may not work for you.

I am going to try to see a new EP in the spring and I am going to bring up MCAS as I have many of the symptoms. No dr. has yet told me what type of POTS I have and even the dx dr. diagnosed me as "probably" having POTS. I just try to live every day as best I can and do what I can. It is so great that you have support in your hubby (as do I)! That truly does make such a difference.

I surely hope you find some answers soon. I know that sleep is so important.

Richest blessings to you for a symptom (or less severe) free holiday

[Angela]

as already mentioned and from what i read due to the splotching on your face sounds like mast cell issues, h1's and h2's helped me immensely, along with konopin generic, before h1's and h2's I was at 2 mg per day to calm my adrenal surges but now am down to 1/2/ mg. I do take it in the a.m. tho cuz that's when my tachy/bp is at it's worst, trying to get my son up and get ready for work...etc. klonopin worked wonders for me, along with adding on antihistamines. and I tried beta blocker and made me feel aweful.

[southbel]

So, I've gone and read some on MCAS/MCAD. I can seem quite a few similarities there. I know that Propranolol was very, very bad to me (stomach issues, no control of tachycardia, massive insomnia, headache, etc, etc) but thus far, the Metoprolol seems to have improved my tachycardia but not the adrenaline rushes. When you say that Beta Blockers made you feel awful, was it from more adrenaline rushes, tachycardia or what? Only thing that I have noticed while taking the Beta Blocker is that my blood pressure seems to jump all over the place from very low to quite high and often I have extremely wide pulse pressure.

I'm in Charleston, SC and from what I've read on the thread, there's an MCAS specialist here at MUSC. Maybe I'll have my cardio consult with him - although they are at competing hospitals.

[southbel]

Still not sleeping. Dear god, will I ever sleep???? Have an appointment with the cardiologist next week. He's going to give me another holter monitor - sigh.

[Angelika_23]

Southbel,

I mentioned in another thread to you, but thought I'd post here too. Have you thought about trying Klonopin? It seems to help quite a few of us on here. I'm glad you started this thread, it made me see that I'm not the only one with this problem.

[spinner]

Have you looked at the possibiliity of dr. cheneys overstimulation recommendations with doxepin and klonopin? Maybe your adrenaline spikes are also going on on the cell level of over stim of firing neurons.

[southbel]

Have you looked at the possibiliity of dr. cheneys overstimulation recommendations with doxepin and klonopin? Maybe your adrenaline spikes are also going on on the cell level of over stim of firing neurons.

At this point, very little has been done to help with these adrenaline surges. Thus far, my cardiologist has only recommended natural therapies including Melatonin and Chamomile Tea. I have an appointment next week that my cardiologist already told me I would get another holter monitor if the natural therapies did not work. I will ask him what other suggestions he has because I have not slept through one night in over three weeks now. It's making functioning on a daily basis impossible.

I am unfamiliar with Dr. Cheney's protocol. To put it mildly, you need to dumb it down a bit because I honestly have no idea what you're talking about! When I was first diagnosed with POTS, my initial instinct was a bit of denial so I am not nearly as well versed on the research as other members on this board. I'm learning but feel a bit behind the curve here.