Ok, as an update for all who followed my previous posts... I had a vaso vagul synscope (fainting upon standing) episode a few months ago. I went thru a holter monitor, echo, 2 EKG's, nuclear stress test, a trip to the ER , tons of bloodwork, an endocrinologist, and a cardiologist. I also just had a tilt table test done as well. The tilt report said i had "possible mild POTS" so do i have it or not first of all? The cardiologist present at the test said no meds needed, just diet and exercise , up your water and salt intake. The endo Dr and a family Dr agreed with that as well. But today i had a follow up with my regular cardiologist and he gave me scripts for Toprol 25 mg 2 times daily and Florinef neither of which I was suspecting. I was hoping for the all clear from him so I could get back to my normal life! I am scared to death to take the beta blocker because I only experience higher blood pressure (138/79 or 140/78) while in the Dr's office, I have a little bit of "white coat syndrome" and get extremely nervous while there. My heart rate is usually elevated quite a bit as well. Has been as high as 198 before, at time sin the 140's, 120's and today it was 110. At home according to my BP cuff here , it is consistant abt 117/76 BP with a pulse of 93. I am sitting in a lazy boy while taking it. My resting heart rate has always been in the 90's, ever since I can remember, but it has been since this fainting episode that it has gotten worse. HR in the 100's like i said.
What has everyone experienced with the beta blocker and florinef, I really don't want to take it if I dont have to. I do suffer form anxiety and have been taking xanax for that which has helped alot, which tells me my POTS isn't that bad because since I have been on it, I have not had the symptoms I do when I wasn't taking it. I am worried the beta blockers will be too strong. Do you think I could start out with 25 mg a day of Toprol (1/2 a pill in the morning and the other 1/2 at bedtime) vs the full 25 and 25? I would like to try as little as possible. I really dont want to take the Florinef, I don't want to blow up like a water balloon! What meds have worked well for you guys?
The endocrinologist gave me a script for Paxil. I held off on taking it because i was due for the tilt test and was told not to start it. I have also taken in the past and don't like the sexual side affects from it. Some here have said they take other SSRI's or Cymbalta....any advice would be appreciated. Why does this Dr want the meds when 3 others agree I don't need any? I have felt pretty good since I have started yoga, upped my water intake, been drinking gatoraid, and also been adding salt to my food. I have felt pretty good until today when all this started. Now I feel flushed and anxiety is thru the roof again about these stupid meds. Dr wants to see me in a month, and he'll prolly be mad if I don't start the meds like he wants. I just think why start them if I have been managing without...? Also, if one does faint from POTS what is your family supposed to do for you upon waking? Call 911, give water? what? I would like my family to have an action plan in case I ever do faint again.
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.
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!
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)
I'm short on time at the moment, but wanted to at least address your question about why you don't have symptoms whilst doing yoga. I admit this seems odd at first blush. If I had to hazard a guess, I would say it has to do with the fact that your muscles are active while holding the poses. Skeletal muscle activity helps pump blood back to the heart, limiting blood pooling from gravity; this is why fainting frequently happens while standing still in line, and not so frequently while walking, despite the fact that both involve upright posture (i.e. orthostatic stress). Where the POTS isn't extremely severe, skeletal muscle pump may be compensatory enough to get sufficient blood return to the heart to make up for the blood that is displaced under orthostatic stress.
Another helpful factor is that purposeful breathing is encouraged in yoga, which may help to reduce anxiety and stop the feedback loop that perpetuates it and possibly worsens spells of tachycardia in those with POTS prone to spells of anxiety.
Sorry I don't have time at the moment to respond to everything in your message. It looks like others have addressed many of your other questions. Please feel free to let me know here or by private message if there's something else you want me to specifically answer for you. Best wishes on finding the best treatment plan for you!!
Before breaking your beta blocker in a half, or any medication for that matter, be sure to ask a pharmacist if it is safe. Not all medication is meant to be broken in a half.
There is a shorter-acting generic for Toprol XL. This can be broken in a half, and the dosage raised slowly over a period of days until you reach a therapeutic dose. Once at a normal dose, you can switch to the Toprol XL. This is actually how I started taking it because of my medication sensitivities.
I met with my Psych today and exaplined all that was going on . My situation is very similar to yours. My main issue right now aside form feeling POTsy is extreme Panic and anxiety. I have Panic Disorder that needs to be treated. My Psych, who I thouroughly respect and trust, suggested that I take Xanax (.25mg) 3 times per day. For me, that is a lot. I currently only take it as needed when my panic gets out of control and I really need to recover. I sometimes "give in" when it starts before it progresses to a 10. His reasoning behind this that I need to not let the panic consume me and that I need to regain my confidence. He wants to try this way for 30-90 days. Im still up in the air about whether or not this is the method I agree with or if I should go with Effexor (which my other doc suggested) or take the Effexor and the Xanax as needed. I was idner the impression Xanax was a "rescue" drug only but he assured me that it can be used daily. I did get the impression that it would be used daily for the immediate future to get me through my days and couple it with talk therapy. It did not seem as though this was his solution for everyday for the rest of my life.
I take xanax too. I take the .25 also ... Listen, when I first fainted back in January, and started seeing all these Dr, doing all the tests, etc, my anxiety reached proportions it never has before. I used to have like a generalized anxiety, like a constant racing mind of "what if's" and did I forget somehting, especially at night when everything was quiet. But I never had panic attacks. I do believe after all this I have had panic attacks. I would not have been able to live thru everything I went through if it was for that xanax. I am just as afraid to take meds as you are and even had anxiety about taking it, but taking it short term, and by this I mean maybe 4 wks to 3 months, is not going ot hurt you. For me, once the rollercoaster of anxiety and panic attacks start it is impossible for me to stop it. The xanax every 4-6 hrs for me for 2 weeks did that. It like reset my brain. After that 2 week period, I took away 1 dose and so on.... the dose is the smallest they make. Some peope take the 2mg dose which is 8 times stronger, and they do that every 6 hrs. !! Believe a short burst of xanax to get through somehting is not going ot hurt you. I would definately take it while starting a new med if it doesnt intereact or anything. Because when i started paxil a few years ago my Dr gave me 1 refill of xanax to get adjusted to it, somehimes those SSRI's and such can cause jitters, anxiety and aggitation until they fully get into your system. At least they did with me. The xanax evened me out. I just took 1 a day then. Then stopped them. I was free of them for a couple of years until this started. You just have to be careful and it sounds liek you already are. Like most anxiety patients, we don't like to take meds. It causes us anxiety! I understand completely. Have you looked into the Lucinda Bassett tapes and cd's through the midwest center for stress and anxiety? She is a past agoraphobic and talks with her Dr on these tapes and holds talk sessions with other anxiety sufferers and there is a work book you work in for like 15wks. It really helps. i have started them. They give you things to do to stop the anxiety befor eit gets to that 10 you mentioned. Please look into it. You may not need the drugs if they help you. If you have any further ques. about them feel free to message me privately if you want to.
thanks everyone for your great advice and information. I will defiantely check with all Drs and pharmacies before taking a med not as perscribed. Thanks! I will read that article from Dr Grubb too. Does anyone know if he is still excepting patients? I would love to see him and get a second opinion since my initial diagnoses was called "possible mild POTS' I live in Toledo where he is and wouldn't even have ot do the long travel like many of you do. Someone said his family is sick or somehting? Thanks again all who replied! I don't know what I would do sometimes without this group!
Yes, Dr. Grubb's wife is in the terminal stages of brain cancer. The last time I spoke to someone in his office (in February, I believe), he was seeing about 4 patients a week. I'm presuming that consists mostly or entirely of follow-up with existing patients, not new-patient appointments. Understandably, he is focused now on spending time with his wife. Dr. Grubb, himself, is also a survivor of serious illness but I think he is in remission currently.
In order to see Dr. Grubb, I believe you need a referral from your cardiologist. Needless to say, the wait may be substantial to get started as a new patient, depending on his personal situations. But it may certainly be worthwhile to at least get started with getting records transferred, etc.
Also, anyone considering long-term benzodiazepine use (the class of drugs that xanax is in), should probably read a little about benzodiazepine withdrawal. This is not to say that I would discourage you from taking xanax, but that I would encourage everyone to be aware that it may be necessary to carefully taper off the drug when you decide to stop it to avoid withdrawal symptoms.
You can read more about this here:
Wikipedia seems to have some of the most comprehensive information on it, however brief warnings about the risks of withdrawal from benzos can be found everywhere from the National Institutes of Health website to law enforcement websites, so I gather it must be a widely accepted phenomenon (whether or not the details of it may be disputed).
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