need help please re: beta blocker

[Nicole's Mom]

Hi. I really need some help now with one particular question regarding Nicole and her racing heart. Something she asked me to post regarding a specific beta blocker. Which I will get to momentarily.

First to update you. The IV saline seems to help somewhat. She gets relief - to a point. Yet the fluid does not stick. She pees most of it out. Anyway when her plasma volume is low her heart rate is around 150 when she stands. That?s since this relapse within a relapse. Before while in the original relapse it would go into the 120?s. She is exhausted.

Plus she had an anxiety attack yesterday which lasted a long time and then she became very despondent. Before this she was hanging on better emotionally albeit struggling to do so. She is usually pretty tough and can bear a lot . She?s been trying hard to be hopeful and patient all over again but then yesterday all of a sudden she began to feel like this illness has become more than she can bear. That was yesterday and she has been unable to shake the feeling. She hates feeling so badly i.e. emotionally awful on top of the illness. Meanwhile she is upping an anti-anxiety drug and upping her Zoloft albeit in tiny, tiny increments which is how she has to do it. What is good is that she is the type to do what she has to re: her emotions instead of letting the emotions overcome her for good which is not good for this illness. Not to mention that the emotions are terribly uncomfortable.

Anyway this morning she talked about trying a beta blocker. She?s often afraid to take a new drug but she can?t stand the heart racing and we all can see that this cannot be good to have her heart race like this.

A few years back Nicole was more stable in a remission and went to see Dr. Cheney in North Carolina (took a month to recover yet she didn?t entirely relapse like this stretch- she was way stronger to start with before the trip). Dr. Cheney recommended Coreg to her and it has always been in the back of her mind as something to try. Anyway what Nicole wants to know is of those of you who have tried Coreg what are your experiences with it re: sensitivities/ success. Nicole is highly sensitive to drugs as many of you are but Dr. Cheney said this was one of the most benign drugs. Nicole knows that everyone with POTS responds differently to drugs but nonetheless she was wondering how you all have done with it.

I researched some past posts and saw that some of you use Coreg as a beta blocker. But I could only find a handful of posts.

So if you could help us in this arena we again would be most grateful. If you can describe the benefits you've received from using a beta blocker that would be very encouraging to her.

Thank you,

Beverly

[Merrill]

Hi, Nicole's mom ... I'm not the best person to respond, but since I have a minute, let me just quickly share what my cardiologist told me. First, I've been diagnosed with POTS as the reason for my incredibly high heart rate ... and I do have a number of other symptoms that others here have too ... but thankfully, I'm able to work and I'm doing well by all standards. Some days are better than others...

All that's to say, I'm not taking medications; I'm doing the high salt, high fluid, and tight (30-40) compression hose--and those things are helping me to feel and do better ... my heart rate has come down some. It's still over 100 bpm during most waking hours, but it's more like 100 - 125 instead of in the 140s. It's been this way for some 30 years, so needless to say, I'm used to it. My doctors are unconcerned about the fast rate now that I've been diagnosed with POTS; my heart is functioning normally given the lack of vasoconstriction in my legs, and there's no "damage" being done to my heart simply because it's beating fast. The same is most likely true for Nicole.

I asked my cardiologist about beta blockers too, because I wondered what I would feel like if I could just slow things down a little. (I'm so wired all the time--fight or flight feelings and all that.) He said they may make me feel worse UNLESS I were also taking a drug like midodrine, which would help with the vasoconstriction. (Many people with POTS take this kind of combination of meds, although I'm aware that others on this board do only take a beta blocker and find success with that.) But this is what my doctor told me, so this is what I can report. (I opted not to try beta blockers and midodrine because I had been undergoing fertility treatments and I can get by OK w/out them.)

I was rereading your first post and this one--how could poor Nicole NOT have an anxiety attack with all she's going through right now? IVs every day? Wow! That's very very intense, I think; it would be tough for me to endure as well. She sounds like a very brave person, though, and she will make it through. Please tell her we're all rooting for her--and to hang in there. This period will pass, and she will be better and do better. WAIT is the word I return to in my head, time and again. Just wait. There will be downs, but right on their heels, there will be ups.

And in the meantime, anything she can do to distract herself from focusing too much on her body and what her heart is doing would be great. Does she have the strength to draw? Color, paint? Put photos in an album? Work a puzzle, a scrapbook, read, watch TV? Write? Even from bed, some of these things are possible...but the important thing is to try to focus on something else for awhile if it's at all possible.

I also want to recommend that she wear those compression hose--even for short walks to the bathroom; they've made a world of difference for me, anyway.

Take good care; it sounds like you are!

Merrill

[MomtoGiuliana]

Hi Nicole's mom

I am sorry to hear Nicole has had a particularly difficult couple of days. Unfortunately this condition can affect nearly every function of the body--including the brain. Most of us have experienced significant anxiety and panic attacks--they only add to the difficulty of managing the condition.

I am not familiar with the drug you mention, but I have used pindolol for the past 20 months. 5 mg/day--which is a very low dose. It has helped me a lot with the discomfort of a rapid heart rate and ectopic heart beats. I think it also helps a bit with anxiety associated with the extra adrenaline the body produces with POTS. Beta blockers will lower blood pressure as well as heart rate. I believe you said Nicole has been experiencing high blood pressure recently? If that is the case then she is more likely to benefit from just a beta blocker than would others with POTS who have the high heart rate, but low blood pressure. As Merrill mentioned, those patients generally need to add a drug that increases blood pressure as well.

As far as the anxiety and depression, one thing that helped me, that Nicole may not be up to (I was barely up to when I started it) was learning some breathing exercises. I went to a psychologist with expertise in biofeedback and other techniques that enhance healing. Basically, in my case, he felt I would benefit most from learning exercises that would relax my body as completely as possible--as it is probably true that a relaxed body and mind heals better and faster than a "wired" one. I found this very helpful. Also, he helped me talk through the emotional issues associated with chronic illness, mostly with me, but my husband was involved a bit too.

Are you familiar with Dr. Andrew Weil? I recommend this book frequently, because it helped me: Spontaneous Healing. It is a hopeful book with case studies and basic suggested strategies for healing from what seems the impossible. There is nothing about POTS, but he does discuss the autonomic nervous system. At the end are breathing exercises. There is one in particular that he says is supposed to help calm/even out the autonomic nervous system. I use it still when I am feeling poorly, or even just in general to help me relax. Anyway, it is something safe and non-invasive to try.

I feel for Nicole. Your descriptions bring back to me vividly what I experienced with POTS too. I am so glad you found us b/c it can feel like a lonely world when you are facing this chronic illness that no one seems to know anything about.

Let us know how she is doing.

Take care,

Katherine

[yogini]

Here is a link to a discussion on beta blockers which you might find helpful.

http://www.ndrf.org/NDRF%20Patient%20Handb...A_pp189-216.PDF

I take atenolol. Before I started it, my pulse would easily go to 120 or 125 when standing and/or walking and would sometimes even go to 150 or 160. I had a couple of really bad tachycardia attacks which landed me in the hospital. The lowest dose of 25 mg as helped to bring my heart into control in conjunction with florinef. Now that the Drs have tried to reduce my florinef, I have upped the dose to 37.5 mg. The first week I started it, I felt really tired and breathless and it added to my dizziness. But the side effects totally went away after about a week, which I think they do for most people. And now I can't function without it.

I think the beta blocker you mentioned Corgard is also known as nadolol, which a few people I know have had good experiences with. However at the Mayo Clinic they told me that inderal (a non-selective BB) is the most effective for POTS patients. They didn't want to change my medicine since I am already used to the atenolol (which is selective). There is more info in the link I posted. Let us know what you decide.

[blackwolf]

Hi Beverly,

Tell Nicole to hang on, it does get better. I'm sending her good vibes(=== )

As to BB(beta blockers), I personally take Toprol XL(extended release), brand name for Atenolol, I happen to recieve this free, though Atenolol usually runs about $10.00 a month.

For the paic attacks, I'm afraid I have very little to offer. Since stopping Paxil about Feb., I too have relied on my biofeedback breathing tech. for calming my anxiety. And I have to say, push the fluids. I know there are some of us who don't get out of bed without close to a liter of water in our system. I also agree with the compression hose, even in bed during the day.

Give Nicole plenty of hugs and kissess too. And yourself, you are one of the most supportive parents I've seen.

Blackwolf

[DancingLight]

dear beverly and nicole,

i don't even know where to start, there is so much to respond to from your last couple of posts! i have a few minutes before dinner and wanted to at least start responding to all of your questions...your posts just bring up soooo much for me!

first of all...welcome both of you to the board! i am so glad that you found us. and that you are asking all of your questions. i hope it is bringing you some peace of mind knowing there are others out there to help, and struggling with you.

beverly...you are a special mom to do this for nicole and post. you remind me of my mom...b/c we are very close and she is my primary caregiver also. it has been very hard for me, as it is for nicole, to watch her struggle too. i just wanted to send you, the caregiver, a special hug.

and nicole....a very big welcome to you!!!! i am 28 also....so we are immediately bonded . i am always broken-hearted every time i hear of another young person with such struggles. i hope that soone you will feel up to browsing the board yourself b/c it always makes me feel better! some days all i do is check in here. i have a laptop that makes it possible to do! i am just so sorry you are having such a rough time.

ugh, the despondent part is definitely no fun, nor the anxiety...but i do think it will pass! it is IMPOSSIBLE to be chronically ill and not get down. also, the tachycardia and other accompanying symptoms can contribute a lot to the anxiety and it is really hard to even separate them out after a while. nicole, i just don't know what else to say, except that i have felt that horrible and just wanted it to be over and didn't feel like i wanted to fight...but i think that is just part of the cycle. i always cycle out of it. (i'm never a danger to myself or others! just clarifying so no body freaks out here! there are a lot of "mommies" on this board watching out for us!)

if i read your post right you have been sick for 8 years now? is that correct? there was a lot of info, if i got it wrong please correct me! anyway, that is a very LONG time. i have been sick for 6 1/2 and there is a tremendous amount of grief and loss in that for me...our whole 20's as sick and unable to function. sometimes it just hits like a brick wall i think. like you though, most of the time somehow most of the time i am pretty up and able to fight, but not always. the hardest part is not to beat yourself up about it and be patient with yourself...emotionally and physically.

okay, so maybe before i go eat dinner i should at least answer your BB question! sorry! got off on a tangent. i have so many thoughts going through my head wanting to say SOMETHING to make you feel better.

i think you mean Corgard??? if you do, i love it. and it is one of the only drugs i swear by. i have tried to go off of it with disasterous effects. yes, bb's can make you more tired, but the pros of them outweigh the cons. i have only tried one other one as well as the generic of corgard and can't tolerate them. i have stuck with corgard, although, some docs don't care for it as the best choice. it is one of the old ones.

if you do decide to try it....since your anxiety level is high right now...beware that you can feel a bit funny at first as your heart kind of "re-regulates"...i just felt the beats funnier, but let me tell you, i do not have tachy anymore.

also, compression hose are a great discovery which no one really pushed with me and ended up doing on my own. might want to start with a lower compression adn work up. but i wear 30-40. let's just say, if you don't like 'em or they don't help....othey are quickly removable unlike a drug! so, i like them for a non-pharmacological approach with nothing to lose really. i guess the docs don't think young people will comply with wearing them...but i could care less now about that part of it all.

i have lots of meditation cds with guided meditations that i do when i cannot tolerate anything else. and books on cd from the library are my other lifesaver in the worst relapses. they both help me with the anxiety. the books on tape are good b/c they don't cause more stimulation/fight or flight response for me like tv does.

i hope something in here helps and that you find some relief soon. there are a lot of treatments left to try...it's just getting through trying them until you find the right ones!!! that is so much easier said than done. i too am terrified of new meds. just start teeny-tiny!

well, i gotta eat dinner,

more later.

welcome, and please continue to keep us posted.

emily

[michiganjan]

Coregard is different from Coreg. However, both are beta blockers.

I have been on both. I did not do well on Coreg. I took Coregard for over 10 years. Many POTS patients take a beta blocker to help slow heart rate.

Without taking a beta blocker, my heart rate goes from high 90s to 160 shortly after standing up and hangs around in that range until I sit back down. On a very small dose of beta blocker (I use Sectral right now) my heart rates stay in a normal range.

Many people with POTS are what Dr. Grubb called "Hyper beta sensitive" For those individuals, a beta blocker can make a big difference.

I have had POTS for over 25 years. Based on my experience with Beta Blockers for POTS (I have tried at least 12 different ones) it is best to start very low. If your daughter tries a beta blocker than ask for it to be the lowest dose possible. Get the smallest size pills or capsules made. I even split pills in order to start at a miniscule dose (If they are not time-release--make sure before splitting pills that it is okay to break them--it is not good to do this with time-release pills). Then I work my way up gradually and watch the heart rate. This way you will know what the lowest possible dose is that is helpful. Some drug side effects can be dose related, so it is always safest to take the minimun needed to get the job done.

As for capsules, I even open them and pour some out, then close them back up and take them. Right now I take 1/2 the contents of 1 sectral capsule 2 x a day. And that is sufficient.

Also find out how long-acting the beta blocker is. Sectral is not long acting so I want to take it twice a day. Dividing my capsule in half and taking the halves 12 hours apart is much better than taking it once a day.

Good luck

Michigan Jan

[Nicole's Mom]

Thank you all so very much for your kind and thoughtful comments. I just came in the door and went WOW when I saw all the responses. I can't wait until the morning when I'm rested (I'm am so beat right now-) to read them all again and respond to some of your questions and comments. Until the morning -rest well all of you and thank you again.

Beverly

[michiganjan]

I want to add something to my earlier comments on beta blockers.

An added reason to begin at such a low dose and go very slowly is that sometimes by doing this, you can actually get successfully established on a drug that is very beneficial, whereas, if you started at regular amounts and went up faster, the drug might be abandoned because of side effects.

As an example, years ago when I first started Coregard, I followed the doctor's instructions and took the starting dose he recommended. After about four days, I was walking briskly across a college campus and could not get my breath. I had to hold onto a stranger for support to get to my car and then I had to sit there a long while before I had enough breath to go home. I thought I was having a heart attack.

My doc was not in town so I discontinued the beta blocker. Later when I talked to my doc, he said that at the beginning the body does not know how to metabolize the new drug. He wanted me to go on taking it. I was able to get over that phase however, only by going more slowly at a lower dose. If I had started out that way, I would not have experienced such a shocking symptom.

Starting low and going slow gives your body time to figure out what to do with the drug. Beta blockers are very powerful drugs and they can have powerful side effects. Give the body a chance to do its best with the drug.

When I say go slow, I always start a new med as low as possible and stay there at least two weeks, even if I am not having side effects or benefits. Starting with very low doses also has a psychological advantage--you are not as afraid and that helps in getting successfully established, too.

Sorry, so windy tonight

Michigan Jan

[DancingLight]

michigan jan....

excellent tip!

i have had that same experience with meds...where i couldn't take the higher dose and should have started smaller.

you may have to push the doctor on this one.

i.e. was in the er the other day and they tried to give me 2 percocet...i said no, i will take one, they came in wiht two anyway. when they left the room i took 1/2...and that was plenty. my theory...you can always take more, but you can't take less once you take it! when i saw my regular doctor the next day he said...you were not being obstinate, you did the right thing....your bp would have bottomed out! i told the er doc to give me what he would give a toddler...as you can tell he listened so well....aaaargh...sorry, off topic

so, my message...listen to your gut....and starting teeny-tiny does help psychologically too! i agree! it makes it bearable.

everyone else had great tips too...merrill...i may have to get that book and also try just meditating on a word and see if it helps....i keep reminding myself that meditation is a "practice," but it is soooo hard!

emily

[Guest Julia59]

Hi Nicole's mom and Nicole,

I found propranolol to be helpful---but it is a very old drug. And it can also be too strong---and not strong enough for other's.

I know how the anxiety feels---make's everything seem all the worse---then is leaves you very depressed----but the good news is that was one of my first symptoms, and also the first to LEAVE. I still get those attacks sometimes---but they are not nearly as bad. I wish I had more words of wisdom to say----but it looks like everyone that responded has taken great care of you both. This website is a great place to go to get your faculties back---it's helped me get mine back many times----------------------

Also, I found that things sometimes come is cycles with POTS---and assure Nicole that this hard time for her will pass---and there will be more healing ahead.

Nicole will be in my prayers.

Julie :0)

[Nicole's Mom]

Hi. It is morning now I would like to respond to some of your comments. First I'd like to say that last night Nicole's mood/ anxiety was much better. First of all she and her father just happen to notice (this was after the anxiety/ despondancy had already kicked in) that her Klonapin med which in her case helps the racing thoughts and that over adrenaline-y/wired body feeling was only half the dose it should have been. The bottle said .5mg 3x per day as needed instead of 1 mg. 3x per day as needed. Presently while so acute and overwhelmed she really needs the 1 full mg 3x. per day. Yet she was only getting 1.5mgs.

Anyway that was straightened out immediately and when Nicole went up to the full 1mg. dose she could feel a difference - i.e. more relaxed and a reduction of frenzied, fretful thoughts. Which in turn reinstated/ kick-started her own ability to "deal" better which means that her situation became a lot more bearable. Which speaks to the sensitivity to drugs - certainly sometimes POTS patients need in certain cases only a teeny drug dose yet in other cases you simply need the full dose. Also as I mentioned before she began slowly raising her Zoloft dosage. I think she went from 25mg. to 30 mg. and will probably land on 35mg.

So thank you all for your empathy and validation regarding this anxiety problem. And for all your hugs and kisses and well wishes promises of prayers for Nicole. She is truly looking forward to joining this forum and "meeting" you. She already wants to give back to you for your kindness. She is so grateful that you have been so supportive so far in such big ways in such a short period of time. She is very grateful that you have provided her with different takes on beta blockers and she is completely with you on the notion of starting tiny and going up slowly until the right dosage is found. And it is good for her to know that there can be slightly weird feelings even if it is the right drug as her body adjusts. There certainly are choices when it comes to beta blockers. What an education you are giving us!!!

She also loves the Spontaneous Healing book by Andrew Weil. In fact just last week she watched his DVD of that same subject and she wanted me to pass along that the DVD is also wonderful and a bit different from the book and there are additional things about it that one can benefit from. She wrote down 7 short, important things she gleaned about dealing with illness. She wants me to pass these 7 important things along to you. When we go to her place I will copy her list.

Also she is also right with you re: the notion of trying to distract herself. Since she cannot concentrate at all to write (she loves to write poety, fiction, journaling) or read (she is an avid reader when she can engage) or even converse- talking tires her out she listens to books on tape- inspirational, meditative types and she watches movies and TV but only specific programs that won't trigger anxiety.

Anyway- this forum is a god-send. Nicole will feel right at home when she is able to join you.

Thank you to all.

Beverly