First of all, I could have written that exact same post that you wrote! YOU are in the same exact situation as me- down to the HR, similar BP, white coat anxiety, and xanax! I was also just given an Rx for an SNRI (different from an SSRI like Paxil), supposedly less or no sexual side effects. My cardio and neuro both decided not to give me any beta blockers and neither have mentioned Florinef. I also had the recommendation to increase my fluid intake, sodium and physical therapy.
I have so much to respond to, not sure where to begin LOL If you look at my profile, it shows some recent posts of min - feel free to check them out. I also have been DX with a "mild" case of POTS and vasovagal after fainting in the shower a few months ago and pre-syncope about a year ago, also inthe shower. (hot water lowers BP and can cause syncope). Your body's natural reaction to recover from the low BP anbd to get your blood back to your heart and brain is to lay down (or faint) so that the blood flows back to where it needs to be. After a faint, if you do become unconscious (as I did for a few seconds), I immediately came to. Take your time getting back up because it is possbile to happen again soon after. The only time there would be medical attention necessary would be if you were injured from your fall upon fainting or if there is any confusion when you do come to. Of course, if the faint is in anyway epileptic (like a seizure) you should also go to the ER. Otherwise, it is a pretty "simple" and common faint. It's scary for you and those around you witnessing, but you will be OK.
Feel free to message me.
I can understand your anxiety with the situation. Does your primary doctor know that your Cardiologist prescribed medication to treat your POTS? Perhaps you could discuss it with him/her. They may be able to better help you make an appropriate decision, or at least refer you to another cardiologist.
Overall, how are you feeling? Have you had many fainting episodes, or other POTS symptoms? Even your anxiety could potentially be a symptom of uncontrolled POTS.
Florinef is a very common treatment in POTS, and other forms of Dysautonomia. It's generally well tolerated, (although I couldn't tolerate it myself), and has had good results in stabilizing blood pressure.
It seems that beta blockers are less tolerated, but they too are a common treatment in most forms of Dysautonomia. They can lower blood pressure, but they also work to lower heart rate and decrease adrenaline sensitivity. I actually take the same beta blocker you've been prescribed, and at the same dosage. Toprol XL 25mg 2x daily.
As for the fainting, I might recommend going to emergency for the first couple of episodes. At least until they've been absolutely determined to be autonomic in origin. After that point, it's up to you and those around you to use their best digression. If you're unconscious longer than usual, if you are injured in your fall, or if you have symptoms outside of your normal spectrum of symptoms then you should probably be in emergency just in case.
Otherwise, just laying down should help you to feel better. When you do get up after a fainting episode, do so very slowly. You should sit up for a few minutes first before rising to your feet. If there is someone nearby, they can help you to somewhere more comfortable where you can relax.
You've gotten excellent advice from the responses so far. I wanted to add a little reminder about your rights as a patient. We are taught to be good and listen to what the doctor says to get better, but the reality is that all of the treatment decisions your doctor makes for you are, at the core, recommendations. You have every right to decide something is not right for you and turn it down. It seems that you were happy with the decision to proceed conservatively (re: medications), considering your low level of symptoms and lack of recurrence of fainting spells. You do not seem happy with the decision to add medications. These are indeed common medication for POTS patients, but "common" can be misleading in that we are all individuals and must be treated as such. A cookie-cutter approach to treatment is doomed to failure, as is one that fails to take into account the desires, comfort level, lifestyle, and priorities of the patient.
I encourage you to voice your concerns to your doctors, including how much more comfortable you were with the original treatment plan than you are with this new treatment plan of the common POTS cocktail if drugs. It cannot hurt to have an open dialogue about whether this is really right for YOU in your circumstance. Perhaps, in the least, one option is to give the original, more conservative, treatment plan a shot for a length of time so it can be evaluated whether that alone can be enough to keep your symptoms within acceptable limits. (And don't be afraid to tell them what you think that standard should be; maybe a low level of symptoms is an OK trade-off for you if it means you can avoid multiple medications.)
Lastly, I wanted to echo Halbashes in pointing out something that isn't always immediately obvious. Anxiety can actually be a symptom of POTS/dysautonomia. If you read about anxiety attacks you will sometimes see mentioned a feedback loop wherein a person perceives the physical signs of anxiety in their body (racing heart, sweating, shaky hands, etc.), these physical symptoms may be interpreted with alarm which causes more anxiety, thus the physical symptoms worsen, thus more anxiety, etc. Well, in POTS you're going to have times where your heart rate sky-rockets and you may be tremulous. This can easily lead to anxiety, but it may actually resolve once the POTS symptoms are no longer fueling it.
I think you've gotten great advice on when to go to the hospital and when not to, but if you want me to address that further, let me know. (This is already such a long response--sorry I'm not more concise this morning!)
thanks everyone, you all are such a big help to me, what great answers! Too bad there aren't any Dr.s out there who are as understanding as you all are!
Can anyone figure out that while doing yoga, I have no symptoms? I mean, I bend myself into pretzel shapes , am frequently in positions where my head is below my heart, and have to rise to standing quickly. I am holding poses where my muscles are working really hard and elevating my heartrate with in normal range, and still I do not faint.....I onlyhad that once and I really believe it had something to do with being a little dehydrated. Since I have upped my water so much, I have felt A LOT better. I have added salt to my food, but nothing crazy, I'm just not a person that likes that much salt on food. I do drink gatoraide type drinks though, that have helped to make me feel better. I know there are many types of POTS, does any 1 treatment work better for the types? I wonder why my Drs are trying to find out which kind I have... how does one find out anyways? I am wondering if it is virally induced because my oldest daughter had a mono like illness and had an enlarged spleen in Novemeber. I was so tired then and i wondered if I too had it. This was all the precursor to my fainting spell in January. I had an article by Dr Grubb, but my harddrive crashed a wk ago and I lost it. I can't seem to find what I am looking for on the net.
To add onto my posts. Anxiety is my biggest symtom right now. It doesnt take much to get me going. I want help for managiing that, and I would take meds if I had to for it, the xanax is a great help to get me thru short term, but is obviously a poor long term choice. I have no doubt my reaction to things is 'more than normal" and that my fight or flight response gets triggered easily, so this can be POTS? The beta blockers can be used for GAD (generalized anxiety disorder) and can help bring my HR down into the 70's. It can block the adrenaline response to the heart from my understanding...But I feel more comfortable taking 1/2 the dose he perscribed at first to see how well it is tolerated. I'd rather have to go up in dose from no benefit , than down in dose due to a poor response. Since i don't run HBP (high BP) i worried 25mgs 2ce a day would be too much for me. Maybe 12.5 and 12.5 would be enough to lower that HR even just 10 points without having a big affect on my BP which is already on the lower side. Or would that dose not do anything? I guess it will be a gamble. I did call my general dr, but unfortunately, he is a new Dr as well because i did not care for my old one. This one actually specializes in anxiety. His name is Dr Fisher and he helped found the Midwest Center for Stress and Anxiety with Lucinda Bassett. Not sure if anyone else out there knows the program? There is a series of tapes and workbooks that really help with anxiety. So being that I am new patient we are still in the getting to know you phase. I do have another appt with him next week though. I want to pin him down on this further. Thanks again for all your posts on this topic!
One good article by Dr. Grubb (which may be the one you are looking for) is this one with Table 2 listing treatment options available for POTS.
This is the link:
I hope this is helpful to you. In your situation I would probably do what you suggest... taking half of the med to start with....especially given the fact that you don't have High blood pressure.
This is what it says about testing for the hyperadrenergic form:
Serum samples for determination of norepinephrine, epinephrine, and dopamine levels should be obtained in the supine and upright positions in patients suspected of having the hyperadrenergic form of POTS.
I hope this is of some help and you get answers soon!
My now 17-yr old daughter began with anxiety and depression 6 years ago and is on prozac and lamictal for that, then was diagnosed with POTS last Spring and was given florinef, 1/2 a .1 mg tablet daily, plus sodium tablets (which also contain balancing potassium), as well as conditioning exercises to improve vascular tone. She still has mild symptoms sometimes, but is doing much better just with the florinef and increased sodium intake. On a scale of 1-10, before treatment her overall symptoms rated about an 8 on most days, now mostly at 1 or 2, with occassional 4. All the reading we've done shows us that each patient is different and each patient should approach treatment with input from all their specialists before starting a regimen. We had to really be assertive to even get a referral to a POTS specialist after seeing a peds doc, cardiologist, ped gastroenterologist, therapist. Be your own best advocate and pursue answers and the best treatment for YOU. :o)