Several Questions-Beta Blocker Problem, Maybe, Dealing With Fear And Flares

[Joann]

Since this is all happening at once, I thought I would ask all the questions in one post.

So I went to Cleveland Clinic almost two weeks ago. I was on my meds and actually doing pretty good. If you have ever been there you know there is a lot of walking. I had no problem with the walking, I was carrying my heavy medical records and I was eating pretty good.

Well, day two there was all testing, so no eating or much drinking. It was a 3-4 hour trip home. On the way home I didn't think much about it but I started burping. I took my evening dose of metroprol on the way home and then at home unpacked and ate. About 1 hour home I started to feel awful. Head pressure, problem getting up and bending at all. Blood pressure was a little bit funky (mine goes up).

So the flare has continued. Off and on where I can't even drive to pick up my daughter at school some days. I now have times I cannot eat, which I know is causing some of the problems, I am having burning below sternum. The usual head pressure, and the back of left side of neck and head pain. Now its also in the back , in the middle near bra area (about where sternum pain is in the front).

I go to work one day a week. It was my last day of the semester, so I went last Monday, even though I wasn't feeling especially good. I had gotten up and made my daughters lunch, but later when I was getting ready for work I started feeling worse. Anyways had to leave work early (not good when you have been told they may need to replace me if I can't work more). Had to call doctor. they sent me for the first time in a year to ER. I was having high bp, all the above pain, along with sweating while shivering, diahrea, and electric feelings in jaw and throat. I checked out okay, no heart attack. So I have been trying to take it easy since then. I have been having flares, but nothing like this in months. I am scared it will continue and I will end up like I was last year at this time.

But one thing I am noticing is that when I take the metroprol(I take it in am and pm), instead of feeling better, I seem to feel worse about an hour or more after taking it. Maybe it is just coincidence, but I am wondering if anyone else has seen this. Obviously, its not the cause, but could it be making it worse. I do take an alpha blocker in am also, which the doctors are suggesting I get off of. I think I need to get up the metroprol, but I also know that will be very difficult. I am still not any closer to a definite diagnosis.

Today, I am feeling bad again. I am having burning below sternum and on left side of rib, and in the back. My head feels heavy, when I stand up I feel like throwing up. If I continue to stand the nausea seems to subside. I am having pain on the below left rib off an on. I am not even feeling good sitting. I can walk, but not any other type of movement.

I am getting scared and I know that doesn't help either. I am trying to push through this, I am scheduled for an MRA and MRI of my head and neck, and a heart monitor is suppose to arrive at the house soon. But I really don't know what else to do.

How do you guys deal with the fear? How do you deal with the symptoms? And what kind of problems do you have with beta blockers?

Sorry this is so long, I had thought about posting earlier in the week, but was trying to work through it. I don't feel any of my doctors get this at all. Oh one thing I am late at getting is my B12 shot, could this be causing all of this? I have some doctors say it looks like POTS but other say I don't present like most POTS. So, I worry this is not POTS (of course, I worry it is too), but something else

[Hope]

I'm sorry you are feeling so badly. Have you talked to your doctor about maybe switching your medication to something else to see if you feel better? I took a different beta blocker before Metoprolol (I can't remember the name of it now), and that gave me bad headaches so they switched me and it took care of the headache situation. Obviously, that won't take care of all your problems, but if you are feeling worse after you take them, maybe they aren't the right ones for you.

As far as fear, I deal with it by praying. Hopefully after the MRI, MRA and heart monitor, you will have a better picture of what is going on. As far as not presenting like most POTS, it seems so many doctors don't recognize how people do present with it. I hope you get answers soon. Hang in there.

[Susanhs]

Sorry for your suffering Joann. I too am searching for answers. I agree with Hope that maybe the metoprolol isn't right for you if it's making you feel that ill after you take it. How much is the dosage? Does it lower your blood pressure any? I took a calcium channel blocker once, verapamil and it made me feel awful. I asked the doctor to take me off of it. Make sure you inform your doctor and maybe he or she can put you on something else that will work for you. A lot of us have sensitivity to different medications, so don't give up yet. Gentle hugs,

[Joann]

Thanks for your response. Well the doctors at Cleveland want me to get off the alpha blocker, they said this one could cause some hypotension, but I am having blood pressure spikes not drops, so I don't think this is true. Plus, when I got incredibly bad they first put me on metroprol 25 mg and it didn't do anything, in fact I kept getting worse, ended up in the hospital. Granted I was only on it about 5 days when this happened. But then they put me on this alpha (Doxacisn) and then 12.5 mg of the metroprol. I got a little bit better. Now I know the reason for the two at the time, was to treat a possible pheo tumor. Now that they have ruled this out, they want the alpha off.

But I remember in the beginning when I took the metroprol, I would feel terrible for hours, but I kept taking it because I was so desperate. This fall they increased the metroprol from 12.5 to 25 mg. I am wondering if increase is too much, when I am either getting healthier or getting worse. I have gained weight and strength back, but when this happened I had come back from the testing at Cleveland, so that probably screwed up my system.

I just don't know how to even try to get off the metroprol, at the time when I was only taking it one time a day, a doctor suggested I switch it from night to morning. Well at 4 a.m. I woke up sweating and bp and heart rate were super high, so I took it right away. I also can tell if I am even over an hour late for the dose, so how in the heck do I reduce the dosage? I am only taking 1/2 a tablet at a time, how do you split it smaller? Maybe i really need it ,but maybe it's just the rebound of it.

So my next dose of metroprol is due in an hour. I have been feeling a little bit better this last hour. So we will see what happens when I take the next dose? I guess I will find out soon.

[Guest Alex]

Joann,

I wasn't familiar with Doxazosin, but here is some info from my 'go to' site for researching meds:

serious side effects:

• feeling like you might pass out;

• fast or pounding heartbeats, fluttering in your chest;

• trouble breathing;

• swelling in your hands, ankles, or feet;

Less serious side effects of doxazosin may include:

• mild dizziness;

• tired feeling, drowsiness;

• headache;

• nausea; or

• runny nose.

This is not a complete list of side effects and others may occur.

Cardiovascular side effects are the most common. Dizziness has been reported in 3% to 14% of patients and is most likely to occur 2 to 6 hours after dosing. It may be minimized by administration of the drug at bedtime, particularly at the beginning of therapy. Rarely, syncope has been associated with doxazosin, and appears to be more likely in patients greater than 65 years old. Peripheral edema, palpitations, chest pain, and tachycardia have been reported in 7%, 4%, 3%, and 2% of patients, respectively.

For more see:

http://www.drugs.com/sfx/doxazosin-side-effects.html

Is it at all possible that you're actually dealing with side effects from the alpha and then the relatively small dose of metoprolol you are on may not be effective enough?

It would make sense to me since you say you are quite symptomatic if you are late taking the metoprolol...maybe your dr is on to something.

The other thing - in my experience betas are better taken in the morining (if a one a day dose) as they have the potential to disrupt your sleep.

Also, since metoprolol doesn't come in pills any smaller than 25 mg, you should go to a compounding pharmacy for smaller doses. You obviously need a prescription for that - if you really want to taper it (which is the recommended way to come off beta blockers).

Lastly:

Using doxazosin and metoprolol together can have increased effects on your blood pressure. You may be more likely to experience side effects such as dizziness, weakness, headache, flushing, fainting, and irregular heartbeat, especially if you have been on metoprolol and are starting treatment with doxazosin. These effects may also occur following a dose increase of doxazosin or when doxazosin is restarted after an interruption. Let your doctor know if you develop these symptoms and they do not go away after a few days or they become troublesome. You may need a dose adjustment or more frequent monitoring of your blood pressure to safely use both medications. Taking the doxazosin dose just before going to bed may help. Avoid driving or operating hazardous machinery until you know how these medications affect you, and use caution when getting up from a sitting or lying position. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

http://www.drugs.com/interactions-check.php?drug_list=934-0,1615-0

Hope you'll figure things out and will feel better soon.

Hugs,

Alex

[NaomiSpellman]

I had to get off beta-blocker Verapamil due to lowering BP, worsened OI and Bipolar symptoms. I became suicidal and had to get off it cold turkey one day. Too bad because it did help with migraines and upper body achiness from Sinus Tachycardia. I am afraid to go on pills again. Are you feeling fear, impending doom sensation (like something terrible is about to happen)? Or do you mean fear of med side effects?

[davecom]

Ask about switching to the beta blocker atenolol - it does not cross the blood brain barrier and so has fewer psychological effects. Of course your mileage may vary.

[Joann]

Well I am on a heart monitor right now. Now the doctor emailed me that I should continue blood pressure medications while on it. But I didn't get that email until afer II did what they told me on the prior email. I took 1/2 of my alpha blocker this morning, instead of a whole one. I figured I would be able to tell rather quickly whether it was helping or hurting. If my bp rises and my symptoms are worse, I will take the additional 1/2 quickly.

They feel I should stay on the beta.I have been told by several that some other beta blockers may work better. I am just trying my best to get out of this scary flare, I hate that the focus is on the medications when they still don't even know what is wrong with me. I can take my pick of diagnosis, one is POTS, one is possible hyper POTS, and there are many others.

Naomi- I am fearful of getting off and getting on medications. I have been on this combination for a year now. I am also fearful of how bad i feel also. Last year I went for months without any help and barely able to even get from bed to couch. I ended up in the hospital for 4 days and since then I have fighting to get better. I had finally thought I was close to getting to a functional level and now this. So I am battling this fear, but it is very difficult. As many probably experience, I feel like I have no one to go to for help. So I just try to hope I will turn the corner on my own again.

[Relax86]

Joann, how many vials of blood did they take at the Cleveland clinic? I have noticed a pattern for me that after blood work - sometimes a day or 2 later my flares have flares. I feel like my blood is a gallon of milk and I'm always running 3/4 full with a little hole in the bottom of my container. Blood work, menstrual cycles always deplete me and it takes double the time to get well again. Just a thought. Good luck and feel better soon

[Joann]

Well after taking the metroprol I began to feel really bad within a half hour.

I know that seems quick, but my bp was high. So I broke down and took the other 1/2 of the alpha, because I was feeling worse and a lot quicker than I had in past days. Honestly I hadn't felt this bad in a very long time.

Relax 86 -They did take a bit of blood. Especially for that one volume test. I think they took 5 viaals for that and 2 for testing. I am also wondering if the radioactive dye did something. They say people do not have reactions to it. But last year I had a MIBG with this chemical and I had an awful flare a few days later, that got extremely bad and lasted about 3 weeks. I never thought it was from that, but now I am wondering.

The timing is making me think my medicine is not working. I am getting worse 1 to 2 hours after taking my medicine. My bp is going up after this instead of down, I feel awful, sick to my stomach, head feels like it weights tons, and chest feels heavy. When I walk slowly, I feel a tiny bit better, but as soon as I stop feel terrible again. I broke down and called my local cardiologist (electro whatever she is). I don't know what they will suggest, but I really don't know where else to go. My primary has said she doesn't know what to do the last time I had problems. And the Cleveland Clinic doctors, well one is impossible to see and the other has said, she has only seen me once, so she can't really tell me. Basically, she feels she can't help me until the testing is completed, which is a MRA/MRI of my head and a month long heart monitor, so until then I am on my own, or the ER.

I am trying to stay calm, I have had some times where I feel better, that is why I am thinking the medicine may be adding to the problems. But I also worry there is something wrong with my cardiovascular system. Sorry I know you have all been there before. This is kind of like it was last year, but yet it is different. I seem to be worse when I am sitting down (at times) and the change from sitting to standing and vice versa, it makes no sense. Sitting here typing this my head and stomach are beginning to hurt. I know it is something physical, but at the same time I start to wonder if I am going crazy also. Sorry again, I am just so scared, frustrated and confused.

[Joann]

I wanted to say sorry, if this sounds too much like a diary, I will try not to do that. I know that is not what this forum is for. I guess today I just kind of freaked out and needed some reassurance and advice so I kind of went on and on.

[bebe127]

Joann,

So sorry you are still having such a terrible time. You are NOT crazy!!! I know exactly how you feel. I've been on Metoprolol for 2+ years @ 25mg. 3x/daily (and my dr. has told me that he has patients that are on 300mg/daily YIKES). It seems to have helped me, but as you well know, different meds affect people differently. As you know, my bp tends to spike too. Since you were feeling a bit better before your CC exams, it seems to me that it might be a reaction to the dye perhaps? So sorry you aren't getting anywhere with the dr.s either. Waiting seems to be one of the hardest parts in dealing with this. Hopefully, the tests will reveal something. I now know through all the reading I've been doing that it is so important to find out what type of POTS you have (if in fact you have POTS) I'm in the same boat. I only mention this because I've read that if you do have hyper POTS, bb's can cause issues. Basically, there are so many meds out there to help with symptoms, but it's important to know what they are dealing with so they don't give out the wrong meds. Always talk to your dr. about any symptoms you might be having, I know this can be so difficult as my second job of late is being on the phone countless hours with dr. offices and pharmacies. At this point, try to educate yourself as much as possible and try not to give up. Maybe from any information/education you can gleen, you can then take it to your dr. in the hopes that they will be compassionate enought to listen and help you find a treatment plan to get you back on your feet, or at the very least improve your quality of life. I'm with Hope, in dealing with the fear, I pray.

Will be praying for you and that you get some answers soon. I'm always here for you my friend.

Try to keep your chin up and hang in there.

Hugs,

Bebe

P.S. I have daily chest discomfort/pain too. Unfortunately no one has ever found out why. I don't get the burning sensation you explain but my sternum feels bruised all the time and I get a bruised painful feeling under my arm (on torso) and it sometimes extends to my back. I've had a variety of suggestions from dr.s ranging from: "it has nothing to do with your heart" to "maybe it's the underwire in bra" (even though I only wear a bra if I leave the house which isn't often, sorry if tmi), to "you have a build up of cartilage in your ribs, if the pain gets too bad, we can give you a cortisone shot".

Please don't give up! I will be praying for you

[Guest Alex]

Joann,

a weird idea - you mentioned that your BP increases after taking your beta, have you ever been evaluated for a pheochromocytoma? A rare, hormone secreting (benign) tumor of the adrenal glands? When pts with a pheo are administered betas they usually get rebound hypertension.

It may be worth mentioning to your dr., even if you have been tested...maybe s/he will agree to test again.

Alex

[Joann]

Alex -I was tested for this last year. In fact, my numbers came back high, but not extremely high think it was around 850. But they did an MIBG scan and the technicians told me they thought I would have my answer. However, the results were indeterminate. They showed increased uptake around the adrenals but a CT didn't see anything. Later I was given a blood test that said no. But I have wondered because I have heard that if you are not flaring the blood and urine won't show.

I have heard hyper pots can be similar to this also. So far, I have not seen anyone who seems to be very knowledgeable about hyper pots. They all want to treat me as if I have regular pots. I have also had a test that came back odd for carcinoid tumor, but then I was told the next test came out fine. Again, I wonder if you have to be in a flare for this to show?

Thanks for the thought, I will ask the doctor if this is possible. The reason I am on the alpha and beta blocker I am on is because the cardiologist I saw in the hospital put me on the ones that would best suppress a pheo tumor. Now all the other doctors want me off the alpha, but I really feel this one has been helping me. I am thinking about trying to take a 1/4 of a tablet in the morning instead of 1/2 and see if I feel any better on less of it? I know I can't just stop beta blockers as it is dangerous for rebound heart attacks and strokes!

The CC doctors seem to rule out a possible dissection of a blood vessel in head or neck, because I use to have my neck manipulated at the chiropractor and actually had this done the morning I had my first episode.

[MarkA]

Have you had a tilt table test yet? I would not put a lot of faith in heart monitors. I got fitted with one that was so usless that it required me to press a button to record an event, yea that works great while you are sleeping. I just read the side effects for my Metropolol tonight, makes me scratch my head and wonder why the prescribe it to POTS patients at all. I guess you got to take it with a grain of salt sometimes. http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682864.html

[Joann]

MarkA- I had a tilt table test back in October. I was on my medication, so I am sure the results would have been even more pronounced. My heart rate did go up and my bp actually was going up and down. I was surprised, I thought it would just show my bp going up and then after a while leveling off, but it actually was up and down crazy.

I did not have this test at Cleveland and so now the CC doctors think the medication affected the results. The thing is they do not seem to be listening that I had all of these symptoms for months prior to being on mediation. The medications are what lowered the bp enough that for a while I was functioning a little bit better.

This past month and a half have been extremely bad. I am no longer driving, yesterday I attempted to have someone take me to grocery store. Loading the groceries from cart to check out triggered a worse flare and I can now no longer bend at all without blood pressure rising and pain in both my upper abdomen and back. I am going back to CC tomorrow to see two doctors, I am hoping one of them will take this seriously! One odd thing, I am able to walk the block fine, but any other type of movement, squatting, bending, lifting, some sitting will trigger episodes. Episodes will then cause me to be unable to function for days.