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Is there room at the inn?


Merrill
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Got room for one more down here? The best thing about being in this potshole is that the company's fine...

I'm finally starting to say the truth out loud: I'm miserable. Depressed, fat, tired. For most of the last 3 months, I've been quietly saying to myself I'm depressed, I've gained too much weight, and I'm tired. But for the last couple weeks or so, I've been saying it out loud (which only makes me cry more) ... but I've also been doing some thinking, and I'm able to trace my quiet commentary back a couple months and to correlate it with starting on beta blockers (25 mg Toprol XL).

I was told initially that beta blockers are one of the most commonly prescribed meds and that they're extremely well tolerated. I figured that would be true for me... and the truth is, this medication lowered my heart rate to normal ranges and I actually felt better! It's sooo tiresome to race between 120 and 160 ALL the time, sitting, standing, no matter. But I was down to 80 sitting and 100 walking and that was just fine and a great improvement.

But I emailed my cardiologist and detailed my symptoms--besides the 3 I mentioned, I also have experienced breakthrough high tachycardia with mild exertion and some freaky nighttime episodes of POUNDING heart rate that I couldn't calm without taking xanax.

He replied that my symptoms are, in fact, RARE side effects from beta blockers. (oh, grrreat). I realize I'm not saying anything most all of you have already said--if it's a rare side effect, we'll experience it. We pots people are a rare breed. But sheesh. He said that the BB is for symptomatic relief, and I could lower the dose ... but I did lower the dose by half over the last 48 hours, and found my tachycardia is back to where it was! Only now, instead of experiencing tach as my normal state of being as I had before (I'd become rather used to it after all these years), I find that I HATE it. I LIKED being "normal." Now I wish I didn't know what that felt like, because I can't actually BE normal without feeling absolutely miserable.

Sorry to be so whiney tonight, but I'm cranky and confused.

By the way, the other night when I was having a pounding nighttime "storm," I thought of all of you ... I almost posted, but then instead, I just applied what I'd learned. Breath, relax, tell myself I won't die or have a heart attack...I drank a glass of gatorade and took a salt pill ... and then finally resorted to the xanax. Together, your advice worked well and set me at ease. I heard your voices and found comfort offline.

Hope you're all having a good night. I took my full dose and hope to have a better tomorrow.

Merrill

PS I'd love to hear from you if you had these side effects from bb and what you're doing for tachycardia instead.

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Yes, Merrill, I have had these side effects and I thought it was the Midrodine, but now I wonder if it's the beta-blocker. Your experience increases my suspicion. I find the heart pounding very disconcerting - to say the least!!!! A few weeks ago I was trying to describe the feeling to my cardio and he sent me to the ER! Of course the did the full heart attack workup and found nothing. The only good thing was the IV they gave me. It helped me feel better for over a week.

My husband laughs at any doctor who tells us that something iwe ask about is very rare. He says if it's rare, then I must have it!!! ;)

I find mine comes and goes. Hope you do better tonight.

Roselover

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I'm sorry your having such a rough time right now. It really sounds like alot of us are in the POTS hole. I know I'm there and got the news today that I will get seen at Hopkins next week. Really hoping it will be a very positive experience and help me out.

Back to you. I am not able to help with the beta blocker situation too much. I'm not able to take them, because it triggers asthma problems. When we tried me on one of them, I have very bizarre and of course unusual side effects. It took way over a week for things to settle back down. I have found that I notice the tackycardia more on different medications. Though when I am having a tough time, I have some trouble at night and it makes it very hard to rest no matter how tired I am.

It sounds like you coped very well last night! No matter how many times I have these POTS holes they are all tough to deal with, and all miserable. I think knowing how to get through them, they won't hurt you and that there are others helps some.

Sorry, I'm not more help. Good luck!

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Dear Merrill,

welcome to the hole, i'm still here but clawing at the sides. please feel free to decorate, just leave me couch and pillows where they are as i have kind of grown used to the place.

i'm fighting to get something done about my b-blocker myself, it helps but, just as you are experencing, hinders. weight gain, yep, tired, yep, depressed, yep. doing something about it, yep. seeing a VERY nice endo, running blood work, cardio is changing b-blocker(to one i had before with better results, have to pay for myself, but rather cheap), seeing physiotherapist to see if i can do more to help myself, seeing nice therapist who actually knows what dysautonomia is. i'm dragging, but still moving.

black-still in the hole-wolf

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Hi Merrill;

I am so sorry to hear you are having a difficult evening. I can't take bb since I have asthma. When my tachycardia flares up and really gets going the only thing I can do is lie down and put my feet up. It has been so hard for me to get it under control. My resting rate is still over 100.

The one thing I have noticed that has really helped my heart rate to slow down is going back on my estrogen. I was off of it for a few months so my doctors could figure things out.

I know I talk alot about my hysterectomy but I have noticed that since then my POTS has gotten worse. There were nights, before I knew I had POTS, I felt such hopelessness I would cry myself to sleep.

I am not sure what situation you are in or your age, but have you considered a hormone test to see where your levels are? Trying to make sure everything in your system is in balance might help lessen the need for certain medications.

I wish I had more advise for you. I know how you feel. When I feel like that I take my xanax, go to bed and pray for a better day tomorrow. And don't worry, it will be. Please know that I am praying for you. I hate nights like the one you are having now.

KathyP

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Hi Merrill,

well I didn't expect we would meet in the hole and, as I'm crawling out of it I would offer you my place. BUT it's just that I don't want you or anybody else in the hole. After hearing Ernie's (and others) bad experiences with the medical staff I thought we better ask some strong men to help us dig a very big POTS hole and throw all the ignorant and arrogant, unwilling doctors in it and put a cover on it. I think a week will do, but to be sure we'll take two weeks, just to be sure they will find out how we feel. In the meantime we can all meet at a nice quiet beach, warm and sunny with enough wind blowing to keep us from getting overheated. We could just lay down and talk, make jokes, eat a lot of icecreams (who cares about gaining weight, it's quality of life that matters) and have a great time. Because you know, THAT'S the place I want you (and everybody else who's having a hard time) to be.

I'm sorry that I can't help you with the bb's because I use them and although I think it makes me tired it's worth it because I usually don't have much hearttrouble. I already am very slow and everybodie's got used to that (even I did ;) ).

I'll think about you Merrill, and I sure hope you will find solutions. I think tonight I will be dreaming about the beach, maybe we'll meet there!!! :o

Corina

Oh btw I take antidepressants against my hyperrefelxes, it might work for getting depressed as well. Although I prefer to think it's my sunny and optimistic self who is able to crawl out again (and all the help I get from all of you ofcourse :) )

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Guest tearose

Oh Merrill! You had me crying and smiling with you! What IS normal like anyway?

So, what happened? Well, it could be hormones, it could be the BB it could be the change in weather, the added stresses of life or work or family...it could be my favorite "idiopathic" reasons. (I think my life has been full of the idiopathic causes ;) )

Trust that little voice inside of you and make the changes you think will help.

( You DO hear the voices don't you? :o:) don't share this with the cardiologist! :) ) Hope I made you laugh a little!

I hope the peeps with BB experience can help you figure out if you can change this and feel better. If you think this is the problem, make a change and see!

A lot of us are fighting to keep our heads above ground...

Fact is Merrill, you just gotta fight that sinking feeling. You are always "reluctantly welcome" in the trenches! When you gotta go there than go and do your healing thing and then get your fanny out of there!

I don't know about the BB's to be able to help you in that regards. I just wanted to let you know I am thinking of you and hoping the skip is back in your step real soon!

take care, tearose

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Hi Merrill

Wow, I am sorry to hear all these difficulties you are having. Depression and being tired are classic side-effects of a beta blocker, unfortunately. The depression can wear off over time, but 3 months seems like a long time.

Did the doctor suggest trying a DIFFERENT beta blocker? Have you had a thyroid test recently? I am just wondering if there could be something like that complicating the situation for you. Thyroid would be relatively easy to rule out.

As we all know, too, these POTS symptoms can wax and wane, often with no clear triggers (has the weather been variable recently? I find that can throw my body off a bit.)

It sounds like you are doing all the right things to take care of yourself. Hopefully, you will find yourself back on track soon.

Let us know how things go over the next few days!

Katherine

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Merril I will scoot over and make room for you. Iwish you were not here, but misery loves company. I did awful on topral. It put me in bed for three months. You might want to try a different beta blocker. I am on Nadolol and did well on it. I do not know what my problem is now. Take care,

Dawn A

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Merill,

So, so, very sorry you're feeling this way. I agree with DawnA, you should talk to your doctor about possibly trying a different BB. Testing hormone levels wouldn't hurt either. As far weight gain goes, are you taking any meds that would have caused this? Were you able to exercise at all when your BB was working well for you? Exercise boosts endorphins and makes us feel good - so it's a great natural anti-depressant and weight loss remedy all in one! But I understand that due to your tachy, exercise might be a difficult thing for you to tackle right now.

I hope you do something nice for yourself to get out of the doldrums. I've been there often. It's easy when we're depressed to want to eat more and indulge in those decadent cookies that Tearose enjoys! :D but try to do something good for yourself that has a positive effect on your emotional spirits.

I hope your symptoms ease up soon and that you're back to your happy, smiling self again soon! :)

gena

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Merrill,

Sorry the BB isn't working out the way you hoped. I, too, hate the BB and wish I didn't have to take it. But it does prevent the very horribly scary spells of major tachycardia that I get every now and then. Sometimes I don't know if I'd rather deal with those every week or so than deal with the constant fatigue and worsened shortness of breath that my BB causes. But I think it's probably safer for me to be on it than off ... as your cardiologist will tell you, beta blockers are very cardio-protective.

I agree that trying a different one may help. Also perhaps modifying your diet will help -- I don't know if you eat a high-carb diet, but it sure seems like those who feel depressed do better with a lower-carb and low-sugar diet. Are you able to get any exercise? If fatigue is the only deterrent to exercise, I can say from personal experience that you just have to fight thru it for a while and you will indeed get more energy after exercising. I often have to drag myself -- literally -- down the street for 10 minutes before I start to really feel up to going for a walk. But when it's all over, I have a lot more energy.

Hang in there. I feel that I got better over time with the beta blocker in terms of energy. Not a ton, but a bit better.

Also, I wanted to add that I still get breakthrough tachycardia about twice a month. It often coincides with my menstrual cycle. I assume it's hormone-related. The BB can't take it all away, I don't think.

Amy

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Here's your cup of tea Merrill, it's becoming quite a party down here. I haven't seen any "funny" squirrels yet, just us "nuts." I am really sorry the topral made you so depressed. It is in fact a very common occurence with BB's and I don't know why they don't tell you that! My son got almost suicidal from norvasc they gave him for migraines. However, they don't all do it. You may find a different one doesn't have the same effect. Have you tried any others? Duh, probably about a million, but I do know that one BB may not give you the same reactions as another. They always want to give you all the newest and most expensive stuff, when maybe you just need an old inexpensive one that doesn't have so many side effects. I don't know what you've been on, but you obviously need to get off this one. The bad thing is, it can be very insidious. I hope you find something that helps. I finally just stopped it all and said the heck with it and deal with the arrythmias and stuff. For some reason, just time I guess, it doesn't make me very anxious. That which doesn't kill us, makes us stronger. Take care of yourself, we all want to pop out of this canyon, It all looks pretty much the same, and we need someplace higher up to enjoy a better view! morgan

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Merrill, sorry to hear that you are still down under. I didn't think I had problems with bb until I went off of them after 2.5 years. I was surprised that some, not all, of my fatigue lifted after stopping them. It was really encouraging. I am sure you have already tried several bb so I am not sure what it left for you to try but hopefully something. We want you to feel "normal" again....I am trying really, really hard to remember exactly what that felt like...it has been such a loong time ago (LOL).

Just remember that much of what you are feeling is not a reflection of you not being able to manage -- I think sometimes we are too hard on ourselves, so just be sure you are NOT--it is the MEDS.

As for everyone else, I think we may need to dig another hole soon as it appears to be getting very crowded down there. At the moment I am still on the surface so let me know what you would like in your care packages and I will send it down. Do take care, all.

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Well my dear, we have room for any who need to be here at the bottom. The view from the skylight is fine. Sorry we're in the hole with our other POTS Hole Dwellers. Gladly, the company, as you said, is amiable and caring.

I am not able to take beta blockers because of having asthma...it's contraindicated. However, I'm so with you on the fat and miserable thing. I'm teetering on the depression edge, but haven't fallen in yet.

Hang in there. Maybe there is a different brand of BB that wont give you as many side effects or maybe less intense? Do what you can for yourself re: the depression. You know the drill.

We're all down here holdin' hands. Nina B)

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Merrill,

I totally know how you feel. I have gained 3 sizes and don't fit into any of my old clothes. I thought it florinef I was taking, but I have been off it for 3 months, so it must be the beta blocker. I have been exercising and eating well, and it hasn't helped. It is so hard, especially as the warm weather approaches. I mean who wants to show any skin in this shape! :)

I am in the same boat as Amy. The BB has enabled me to function so that I have to live with the side effects. I have been on it for a year now, and the fatigue has gotten a lot better. Also, my doc has suggested that I wean off of it and start taking it as needed, which I am considering. I am not sure if this is an option for you. Anyway, I hope that you can find something that works for you and that your trip in POTS hole is a quickie! :P

-Rita

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Hi, friends. Maybe if we all start digging, we can tunnel our way up? Or maybe we can keep going straight down and wind up in China? I'd rather take that route to get our baby than fly anyway!

I'm super tired right now--and frustrated, because I really want to respond in a more personal way to each and every one of you who wrote to me last night and today or who quietly wished me well after reading my post. I felt your vibe. :) It's funny--words came quickly and easily when talking about Sophia's mouse problem ... but I find talking about this personal dilemma (and all the challenging emotions behind it) to be much more difficult.

I do want to answer the questions you raised and share a little more--and also say "I'm glad we're not alone" to those of you who share this struggle of accepting the bad with the good in treatments for this syndrome. I'll try to write more tomorrow...

Peace,

merrill

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merrill,

i think i probably speak for others here too when i say...

don't worry about responding or replying 'more personally'...just let yourself RECEIVE from us...you always give so much here...take a turn to soak in some love yourself!

also, the inn is getting very full! what is going on with all of these potsholes? i am posting a sign NO VACANCY! then, maybe no one else will fall in...

but, maybe while we are all here we should have our DINET SPA day? then, we'll get to work diggin' to china for the baby!

okay, well, in the potshole myself, gotta hit the hay...

bon nuit,

emily

p.s. those forceful beats...aren't they wonderful??? that is what always happens to me...and was 24/7 for the first 6 weeks post-surgery! really fun...i feel your pain!!!

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Hi Merrill,

Your many posts are always such a comfort to me. I am sorry you are feeling so down. I too have gained a lot of weight, and I thought it was from the Lexapro. I tried to cut down on it, but POTS symptoms abounded and I was laid up in bed for two days so nauseated I thought I would die. I'd rather feel "normal" and look heavy than go through that!

Anyway, I totally know how you feel. My thoughts are with you. Even though things may not seem so great now, there is always a new day waiting to dawn.

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Poor Merrill, we have reached epidemic levels down here in the pots hole this spring. Hang in there that this may be a short visit instead of an extended stay. I finally see some light at the end of the tunnel and am hoping this recent -- I've fallen and I can't get up -- attack I have had is due to a virus and that I am coming around little by little.

I never did well on bbs, and my cardio has not suggested I start them up again because they seem to exsasperate my fatigue (wonder if they would improve my spelling?)

I take lots of magnesium for the heart racing and palps ... though I do think hormones are playing a big part for me now in this perimenapausal stage.

Ok, it's Friday night and we are in the pots hole ... who has the karaoke machine? I can picture that little critter in Bill Murrey's Caddyshack .... the gopher on the golf course, it sticks it's head up from the hole in the ground and the music plays .... It goes something like this

I'm alright Nobody worry 'bout me

Why you got to gimme a fight?

Can't you just let it be?

Do what you like,

Doing it nat'rally

But if it's too easy

They're gonna disagree

It's your life

And isn't it a mystery

Who do you want?

Who you be today?

And who is it really

Makin' up your mind?

You wanna listen to the man?

Pay attention to the magistrate

And while I got you in the mood

Listen to your

Own heart beatin'

Own heart beatin'

Own heart beatin'

Own heart beatin'

Don't it get you movin'

mmmmm-man

It make me feel good

(Boom, boom, boom, boom)

I'm alright

Nobody worry 'bout me

Why you got to gimme a fight?

Can't you just let it be?

I'm alright

Just let me be

***Ok, who wants the mic next?

EM

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EM,

You crack me up. Even when you're in the hole, you haven't lost your sense of humor.

I can't carry a tune in a bucket, but I'm sure I can sing so badly, everyone of you in the pots hole will be finding a way to crawl out and run away as fast as you can! :P

My favorite Karaoke song is Delta Dawn..what's the flower you have on..could it be a faded rose from days gone byyyyy? (I like to really belt out that last part. :D

It's Friday night...let's get this party started.

Well, gotta go Joe.

Gena

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EM, you're a riot! :D I just called out to my husband in the other room that you'd posted the words to the song in Caddyshack ... and he knew just which one and started singing. Too funny. Thanks! (And Gena, don't I just love that expression "cant carry a tune in a bucket" ... :P ) Y'all are the best.

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I hope you find another BB that works. I have been all over the board with toprol dosage, when it is too much, I cannot think I am confused and that was very scary. At the hospital 3 weeks ago. They took me off all meds in the er and then 3 days later put me back on toporal doubled my dose to 100 mg a day -THAT WAS AWFUL.. nOw they are gradually taking me off. I will let you know how that goes. I have been taking it since OCt. I am new though to the whole pots diagnosis.

I am down in the hole with all of you. I will talk to you later.

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You guys are sooo great, you really make me smile :D:D:D

Can't think of a song right now, can't sing either (that's what all my boys tell me when I try (thank you boys!!!!), so I better give the mic to some else :P

love you all,

Corina

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