Beta Blockers

[Rene S.]

I'm in a quandry. For the last few weeks by b/p has been high along with a high h/r. I've been avoiding beta blockers since they tend to make me depressed and lethargic. However, I was rushed to the hospital on Weds night due to b/p reading of 190/90 and horrid headaches and chest pains.

Two unfortunate things occured. #1, my first Troponin I was elevated (0.12) the next two were in normal range. Also, my D-dimer was elevated (0.65). I had both a doppler of my legs (my right calf has been hurting and still is!) and a V-Q scan. Both negative.

Now, back to the Betas - They started me on Coreg 1/2 of the smallest dose 3.125 I believe. After the second dose, I started getting the worst heart palps. Was dizzy, disoriented and extremely anxious. They still dismissed me.

I spoke with the on call cardio, yesterday and he told me to switch to Atenolol which I have previously taken. 12.5mg. Freezing hands and feet, feeling depressed and out of it. I have tried metoprolol, coregard, and pindolol in the past, each with it's own set of side effects.

I want to start back on an antidepressant and I know that some of the betas interfer with the a/ds.

Does anyone have any advice? I'm just stumped and worried. Even though my troponin level was high just the first time, the oncall cardio in the hospital thought I needed a cath, thinking I could have some cell damage (I get chest pains alot and palps). I'm deathly allergic to contrast dye and afraid that the prep alone won't help and there are risks to the procedure itself.

Also, I'm scared about the D-dimer being elevated especially since I still have the calf pain. I don't have faith in any one dr and they all seem to blow me off.

Sorry for the ramble, I'm just scared and frustrated and now all my friends basically think it's all just in my head.

Speaking of which, I have had an ongoing headache for over 3 weeks now. When I mentioned it in the hospital they gave me regular strength tylenol and even though I'm still losing weight not one dr there was willing to do any testings to get to the root.

I'm just so frustrated with this illness.

Please advice.

Thank you so much.

Rene

[firewatcher]

Rene, have you tried Propranolol (Inderal)? It is one of the older Betas. Do you have a firm Dx of H-POTS? You might need something more like Clonidine (?) instead which is an Alpha blocker. Have you been checked for a Pheochromacytoma (adrenal tumor?) It sure seems like you've got something going on that is not just POTS. Are you retaining water? Lots of questions, sorry no answers. Keep us posted and take care of yourself!

Jennifer

p.s. have you had your thyroid checked recently? HYPER-thyroidism would cause rapid weight loss, headache, palpitations and high BP.

[Rene S.]

Rene, have you tried Propranolol (Inderal)? It is one of the older Betas. Do you have a firm Dx of H-POTS? You might need something more like Clonidine (?) instead which is an Alpha blocker. Have you been checked for a Pheochromacytoma (adrenal tumor?) It sure seems like you've got something going on that is not just POTS. Are you retaining water? Lots of questions, sorry no answers. Keep us posted and take care of yourself!

Jennifer

Hi Jennifer,

I knew I could count on you! No never tried Inderal. I don't have a firm diagnosis of H-POTS but my b/p is constantly elevated where before it wasn't. And I've just turned in the urine test for the pheo. This is the second time. I have all the symptoms but my endo is 100% convinced that it's not. He wants to chalk all of this up to anxiety but there has to be something else. Not retaining any water. I don't know who to turn to. And the ER is getting old. I wish I had one dr. who knew what he/she was doing. I'm getting more and more frustrated with each passing day.

I'll keep you posted.

Thanks, Jennifer!

Rene

[firewatcher]

I don't know who to turn to. And the ER is getting old. I wish I had one dr. who knew what he/she was doing. I'm getting more and more frustrated with each passing day.

Rene,

As much as you might hate it, go to one of the University Hosptials! You have U Penn, Temple, Thomas Jefferson.......

Get a clinical endocrinologist to dig for you! Thomas Jefferson has a fantastic headache clinic! Worry will drive your BP up and you do not need to mess with this!!!!!!!!!!!!!!

Drive the 45 minutes and go! Take the train if you can't drive! Call and ask which of the endos likes to see "difficult cases." Anxiety doesn't mess up lab results! That is straight from my psychiatrist!

Take care!

Jennifer

[Rene S.]

I don't know who to turn to. And the ER is getting old. I wish I had one dr. who knew what he/she was doing. I'm getting more and more frustrated with each passing day.

Rene,

As much as you might hate it, go to one of the University Hosptials! You have U Penn, Temple, Thomas Jefferson.......

Get a clinical endocrinologist to dig for you! Thomas Jefferson has a fantastic headache clinic! Worry will drive your BP up and you do not need to mess with this!!!!!!!!!!!!!!

Drive the 45 minutes and go! Take the train if you can't drive! Call and ask which of the endos likes to see "difficult cases." Anxiety doesn't mess up lab results! That is straight from my psychiatrist!

Take care!

Jennifer

Thanks, Jennifer

I was thinking of calling Jeff in the morning. I was there once and saw an EP guy prior to my diagnosis. This was when I had the non sustained v-tach and was on metoprolol. I just don't know what the heck is going on with me. I won't be able to drive and will have to rely on someone. And to think I used to drive an hour each way to work! Geez what my life has become. I just want to be admitted and have every available test done!

How is it that you are so familiar with the hospitals around here????? And now that I've started the atenolol I wonder if that would skew the tests???? Not that it's doing anything yet for my b/p.

Thanks!

Rene

[babettess]

I can't help much with your quandry except to tell you when I was at my sickest, lowest point of my POTS - my D-Dimer was also high and the doctors never found out why. They did say that false positives happen. My doctor looked more for a pulmonary embolism than a deep vein thrombosis. Have you been checked for a pulmonary embolism?

The people who have taken me the most seriously are my regular family doctor and his nurse practitioner. They had no idea about POTS so they were definately looking for the wrong thing, but they ordered numerous tests and did at least try to figure out what was going on with me. I finally got the POTS diagnosis from my cardiologist about 7 months after I got sick. I was let down in him for taking so long to diagnose me so I went to Cleveland Clinic to get a second opinion.

Remember that doctors work for you. If you haven't found one that you trust-keep looking. Call around and ask to talk to a nurse at each office and ask if the doctor is familiar with your diagnoses. Keep searching and remember you are your own best advocate. And share the DINET website with your friends/family so they can learn a little about what you are going through!

I hope that you feel better and that you find a doctor that you trust soon!!

Babette

[Guest tearose]

I thought I was going to die on Inderal!!! It was the worst chest pain prior to my prinzmetal attack. No beta blockers allowed in my body!!!

[ramakentesh]

The jury is still very much out on whether there is even a form of POTS that is purely hyperadrenergic.

In theory patients with this form of POTS should have excessive vasoconstriction and elevated heart rate on standing without blood pooling - but most doctors accept that ALL forms of POTS demonstrate blood pooling - even those that were previously thought to be hyperadreneric (of which you could say I am one of them).

What this means in your situation is that you may appear to have hyper POTS - so they give you a betablocker and it actually INCREASES your symptoms because it further impaires blood flow to your heart and brain by reducing the activity of norepinephrine.

As an example - when my POTs related anxiety gets annoying betablockers - specifcally inderal - can be helpful, but they also make my dizziness FAR worse and Ive only ever fainted from POTS when on betablockers.

[flop]

Troponin - released when heart muscle is damaged or broken down (so a tiny amount is normal for everyone), goes up loads during a heart attack, can be always slightly high in people with chronic kidney disease.

Troponin peaks at 12 hours after "the event" but takes a couple of days to go back to normal. How soon after going to the ER was the first troponin done and how long before the repeat was taken?

The D-Dimer test is very sensitive for detecting blood clots (DVT or PE) but it is not at all specific - basically it always goes up with blood clots but it can go up for many other reasons. A common cold or virus will give you an elevated d-dimer.

V/Q scan (pulmonary ventilation-perfusion scan) is a test for PE.

Basically you have a raised blood test that could be from a clot but could also be from many other things, your tests for clots in both legs and lungs were negative.

There are several tests for coronary heart disease - excercise ECG, stress echo, angiogram, stress perfusion scan. If you want to have more test for heart disease I would advise talking to one or more cardiologists about the different tests possible - don't just go with an angiogram because it is the most common one.

Beta-blockers and anti-depressants - I took a combination of Bisoprolol and Paroxetine for several years with no problems, no doctor or pharmacist mentioned any interactions (best to speak to a pharmacist, they are experts at medication interactions).

Flop

[Rene S.]

Troponin - released when heart muscle is damaged or broken down (so a tiny amount is normal for everyone), goes up loads during a heart attack, can be always slightly high in people with chronic kidney disease.

Troponin peaks at 12 hours after "the event" but takes a couple of days to go back to normal. How soon after going to the ER was the first troponin done and how long before the repeat was taken?

The D-Dimer test is very sensitive for detecting blood clots (DVT or PE) but it is not at all specific - basically it always goes up with blood clots but it can go up for many other reasons. A common cold or virus will give you an elevated d-dimer.

V/Q scan (pulmonary ventilation-perfusion scan) is a test for PE.

Basically you have a raised blood test that could be from a clot but could also be from many other things, your tests for clots in both legs and lungs were negative.

There are several tests for coronary heart disease - excercise ECG, stress echo, angiogram, stress perfusion scan. If you want to have more test for heart disease I would advise talking to one or more cardiologists about the different tests possible - don't just go with an angiogram because it is the most common one.

Beta-blockers and anti-depressants - I took a combination of Bisoprolol and Paroxetine for several years with no problems, no doctor or pharmacist mentioned any interactions (best to speak to a pharmacist, they are experts at medication interactions).

Flop

Hi Flop,

The first troponin was taken in the ambulance. It elevated, and now I wonder if it's because of the way it was stored because my d-dimer was also taken from the vials of blood drawn in the ambulance.

They repeated the troponin twice afterwards both normal. I believe the 2nd was repeated approx 6-8 hrs after the first, and then another 6-8 hours after the 2nd. I did have the v-q scan done - negative as well as a doppler of the leg that's been bothering me. I have had every heart test done, all that you mentioned including a calcium score test which was zero. I don't want to undergo an unnecessary procedure and especially one as risky as a cardiac cath. Unfortunately, I went to a hospital where my cardio wasn't attending. This test is scheduled for friday and now am waiting for the cardio to call me back. I won't hold my breath.

You are fine with the zebeta and an antidepressant. They don't interfer. It's ones like metoprolol and some others that do. I want to switch to zebeta since I've heard it has less side effects than the atenolol.

Right now I'm just totally frustrated and don't know what I should do. I guess I have to wait it out till I speak to the cardio and perhaps call another for a second opinion.

Thanks again.

Rene

[MomtoGiuliana]

I hope you get answers soon. I know it is scary and frustrating.

A combination of beta blocker and SSRI is a common medical treatment for POTS. I've never heard that the two interact. I was on both for years and my sister still is.

[Rene S.]

I hope you get answers soon. I know it is scary and frustrating.

A combination of beta blocker and SSRI is a common medical treatment for POTS. I've never heard that the two interact. I was on both for years and my sister still is.

Thanks. Originally, it was thought that I had a pheo but the tests were negative. Now I have this nagging feeling that's still where I should be looking.

Pindolol is fine with an a/d. There are some that are contraindicated.

Yes, I am scared and frustrated and still awaiting a call from the cardio. I had to to my atenolol because my b/p was shooting up as well as my anxiety. There is no justice!

I just hope that Idon't have a heart blockage because I don't think you can take atenolol or any other betas if you do. I could be wrong.

I wonder if I should post about anyone having a cardio cath but that's not sticking with the subject of disautonomia.

Thanks again.

Rene

[goldicedance]

mestinon and labetalol plus zoloft - my basic regimen; add a little procrit from time to time...

that's what seems to make the most difference.

[Rene S.]

mestinon and labetalol plus zoloft - my basic regimen; add a little procrit from time to time...

that's what seems to make the most difference.

Thank you. I was told to try and stick it out with the atenolol. I wanted to switch to Zebeta (bisoprolol) but my cardio (former now!) said he doesn't think it's been on the market long enough. I think I will start back on the zoloft tomorrow.

I guess I'll prove my cardio right that I'm just a neurotic woman!

Does anyone see a female cardio???????????

Rene

[maggie]

Sorry to read that you are having such problems with meds. I also have POTS and have had such problems with meds. Dr.s tried so many I litterally was so sick I ended up in the er twice. To make a long story short I found at the University of Louisville School of Medicine they do a pharmacogenetic testing. In simple terms how your body reacts to meds. After getting the test done I found out I had a liver enzyme problem and any drug that goes through that enzyme I can't take, which includes all beta blockers and ssri. If you want more info the web site is www.pgxlab.com. The doctor that helped though this gave me her personal phone number there at the university and I can call her any time to see if I can take any new med a dr prescribes. Hope this helps.

Maggie

[Rene S.]

Sorry to read that you are having such problems with meds. I also have POTS and have had such problems with meds. Dr.s tried so many I litterally was so sick I ended up in the er twice. To make a long story short I found at the University of Louisville School of Medicine they do a pharmacogenetic testing. In simple terms how your body reacts to meds. After getting the test done I found out I had a liver enzyme problem and any drug that goes through that enzyme I can't take, which includes all beta blockers and ssri. If you want more info the web site is www.pgxlab.com. The doctor that helped though this gave me her personal phone number there at the university and I can call her any time to see if I can take any new med a dr prescribes. Hope this helps.

Maggie

Thank you, Maggie for the info. I've always had a problem with meds and the drs look at me like I'm nuts. Even with some of the smallest doses, I have reactions.

I wonder if they do this testing anywhere else besides Louisville? I'm in PA.

I wil definitely check out the website.

Thank you again.

Rene

[ramakentesh]

wow - interesting about the liver enzyme thing - I have something called Gilberts syndrome found once but its supposed to be benign.

I am fairly sensative to medication - parituclarly when my POTS is bad. Im not overly sensative to BBs thankfully.

Clonidine is something that is often associated with fairly positive experiences in Hyper POTS patients .

[morgan617]

I've tried every BB known to doctors. Finally settled on atenolol, but started at a peds dose, and still take a low dose, relatively speaking. I still get fatigue on it and have been on it for about 10 years now. But there's just nothing else that gets my heart rate down.

I had a cardiac ablation in 2003 and now they think scar tissue has affected my rate, so I take the atenolol to keep it lower than 100, but had to get a pace maker to keep it above 25, which it started dropping to on a regular basis. Not compatible with remaining upright.

Anyway, inderal was a real killer, as was just about everything. I figured I would just deal with the fatigue of atenolol and so I have. good luck on whatever you do...morgan