Newly Diagnosed And Toprol Question

[hannahsmom03]

Good Morning everyone. My name is Erica (hannahsmom03) and I am 26 years old married of 7 years with a beautiful 3 year old little girl. I was diagnosed last week with POTS, Mitral Valve, and Neurocardiogenic Syncope. I have been feeling miserable with no diagnosis for over a year now. I am so lucky to have found such a wonderful doctor who knows about dysautonomia. It has been such a comfort to read your personal stories and have someone to realate to that understand your daily struggles. I am thankful that I am now a part of this wonderful group of friends. My doctor has put me on 100mg of Toprol - Xl daily, lots of Propel, and Thermotabs. I wanted to ask if anyone has had severe migraine headaches with this Toprol- Xl. I started out at a low dose of 25mg. because of my sensitivity to meds. and the headaches are just extreme. I called the doctors office yesterday and they told me to absolutely take no more. They said it should not give me a headache period. Has anyone experienced anything with this medication?

Everyone in my family (mom, sister, Grandmother) all take Atenenol for MV. But do not have any other problems like POTS. I would greatly appreciate any input or advice. I hope everyone has a wonderful weekend!

God Bless,

Erica

[taylortotmom]

Well, I think the question would be whether or not you had a hx of migraines BEFORE starting Toprol. I have migraines regardless of which beta blocker I try and I personally don't feel that it is the meds giving me the migraines. I attibute my migraines to the heart issues that prompted the meds! My doctor is in agreement with me (crazy heartrate and Bp fluctuations). So, this is something you and your doctor need to look at- how long you have been getting the headaches and whether or not the meds are a contributer or something else. Keep in mind that beta blockers (such as Toprol XL- I was on it for years) lower your BP and heartrate- so it MIGHT be the cause or might not be. Glad to hear you called your doctor. Good luck and glad you were able to get the diagnosed even if it is a diagnosis that no one wants. Welcome to the forum.

Carmen

[hannahsmom03]

Thanks Carmen for replying. Honestly I think it was the Toprol that gave me severe headaches. I would not get them until after I took the medication. Also I was concerned about taking it because of it lowering my blood pressure and heart rate. Both of mine are already so low its crazy, And then when I stand up my heartrate goes to 130. I think my body is just really messed up right now And I am so depserate to not feel so dizzy and disoriented all the time I will try just about anything. They told me to call back on Tuesday after the holiday and we will try something else. Thank you for the warm welcome. Have a great day!

[lloppyllama]

Hello and Welcome!

I am new here too and have found this site to be a HUGE help with just getting through the day, it helps me to not feel so alone.

I am sorry that I dont have any help for you with the toprol, however I do experience the migraines so I feel your pain!

Good luck with your job, I hope it works out smoothly for you!!

Once again welcome, and have a wonderful day!!

~Mary

[lthomas521]

My personal theory is that POTS causes migraines, because our nerve cells are not reabsorbing and recycling norepinephrine as they are supposed to. When they eventually run low on norepinephrine, wham! Migraine.

Dr. Esler's group down in Australia has shown that people with POTS don't have norepinephrine transporters to reabsorb and recycle norepinephrine.

According to an article by another researcher:

http://www.ncbi.nlm.nih.gov/entrez/query.f...t_uids=14979884

"Specifically, it is suggested that a migraine attack is characterized by a relative depletion of sympathetic norepinephrine stores in conjunction with an increase in the release of other sympathetic cotransmitters such as dopamine, prostaglandins, adenosine triphosphate, and adenosine."

In normal people, beta blockers are used to prevent migraines. http://headaches.about.com/od/medicationpr...ta_blockers.htm

But I still got them even when I was on Toprol XL.

[yogini]

Some people have to try a few different beta blockers before finding the right one. But if your HR is already low, beta blockers may not be the best medicine for you. You may want to look into some of the meds that increase your BP like midodrine or florinef. These can also be taken together with a BB, which can help to counteract some of the bad effects of the BB.

[doctorguest]

Migraine is now thought of as an event mediated by the autonomic dysfunction. Beta blockers have been used to as preventative medications for headaches. There can always be unusual reactions, such as what you're having with the use of Toprol. Switching to another beta blocker, like propranolol or atenolol, may be wise. Since your doctor was able to diagnose you correctly, she/he should know what the next step would be. Another thing is that XL may not be the right form for you, and trying regular release tablets may help you to understand when/how it causes the headaches in relation to the heart rate and blood pressure at that time.

[Sophia3]

Hi

Sorry about the headache. Doctorguest gives EXCELLENT advice about trying short acting b blockers.

I was first given Toprol XL after my TTT by the cardio and it kept me AWAKE over 24 hrs and I already have insomnia (that and fatigue were my first symptoms and later, tachycardia was recognized but we are going back about 17 years)

The Toprol was not working and after a couple of days, I called my endocrinologist/ANS doc and he said to try short acting proprnalol...I take 10 mg AS NEEDED. I rarely take it except on my bad days. but if your HR is low, and BP is low, can I ask exactly WHY Toprol XL was given? In my case, just standing up from supine can boost my HR about 40-60 beats a minute. My HR can be 140-150 just standing..I can even it out with fluids and walking...but Toprol XL seems an odd choice.

Did you ask your doctor specifically why this drug was given?

I tend to ask lots of questions about such things. Then again, after years of this junk, I usually suggest to my doc something I need (like DDAVP which was quality of life changing in many ways!!) or know exactly what med he is talking about.

Over a decade of this ANS stuff, one tends to do a lot of homework. I have always been a detail freak so excuse all the questions.

EDITED: P.S. just reread your second post and saw where your HR jumped when standing. Mine will drop when I lie flat or recline but is still often kind of fast..but my BP can be low in the AM or when reclining! Or post exercise....so I do not take bb's except as needed.

[hannahsmom03]

Hi Sophia,

Thank you for your opinion. I wanted to know the same thing. I asked my doctor and nurse why I was given Toprol Xl at first. They said since I have POTS, Mitral Valve and Neurocardiogenic Syncope I needed something that could regulate my heartrate when standing. I am confused because my normal blood pressure is 80/50 heart rate sitting and lying can be as low as 40's and 50's. But when I stand up my heartrate increases to 130 or above. I had the tilt test last week and passed out within 18minutes . They stood me up and my heartrate went to 158 and within minutes I passed out when my blood pressure and heartrate dropped in the 40's. I was suprised about the dosage they wanted me on in the begining. I was just diagnosed last week but have been suffering with symptoms for over a year. I feel desperate to feel somewhat "normal" again and thought this might be what I needed. I was supposed to take 50mg 2x daily . I was not sure of that so I started out at 25mg daily and started having severe headaches. They were totally suprised since they give this med for headaches also, and they told me to stop taking it. I am just not sure what to do. I am drinking 64 ounces of Propel a day and taking Thermotabs and nothing is really changing. They told me to call back on Tuesday and they would see about changing my medications. I just feel really sluggish and my vision is blurry all the time. I feel a constant weakness in my legs and arms and shortness of breath . I was hoping this medication could help this but maybe I will have to try a few things until I find the right medicine for me. I am thankful for the information on short acting medication and I will definitely ask on tuesday about that. I feel so thankful to have people to talk with that understand my symptoms and that are so knowledgeable about POTS. I appreciate any thoughts take care

Erica

[corina]

hi erica,

welcome to the forum. i am sorry that you have reason to be here, but then again: it is great to meet other people who experinece the same things and: understand !!!

there is a lot of information at this site and a lot of friendly and helpful people from all over the world willing to help!!!

take care,

corina

[Sunfish]

hope that tuesday brings some better options for you med wise. there really are a LOT out there so try not to get discouraged at this point.

toprol was actually the first thing i was put on - a good ten years ago now - and it was NOT a good fit for me at all. over the years i've generally done much better with things intended to up my blood pressure, though for a period of time i was also on a small dose of a beta blocker (inderal) in addition to other things. i've never had success with beta blockers on my own b/c of issues with low bp & hr. one thing that i've heard from a number of the top autonomic docs is that they find a lot of people actually do better on smaller doses of a combo of meds rather than just one; obviously not a certainty for everyone, but it's definitely been the case for me over the years.

fyi, meds intended to raise overall or upright BP through various mechanisms (florinef, midodrine, mestinon various stimulants) can in turn also lower heart rate for some when standing b/c the raise in heart rate is sometimes a compensatory mechanism to prevent or minimize a drop in BP; thus if the BP is better supported the heart rate may not have the need to get so excited .

hope this helps,

melissa

[flop]

Hi Erica, welcome to the forum.

I'm glad to hear that you have found a doctor that has identified your condition - somehow having a label on your illness makes you feel more "genuine" (it shouldn't as we all know we're ill but sometimes it helps others recognise it). Getting the right diagnosis (your doc sounds knowledgable) is the first step on the POTS journey. Some people are lucky and find the right med straight away but I think it is more usual for us to have to try different meds before finding the right one (often a combination) for us. Don't be disheartened that the Toprol XL wasn't an immediate success, it will take time for you to work with your doc to find the right prescription for you.

Good luck on Tuesday,

Flop