yogini

See below for description of SSRIs (Lexapro, Paxil, Celex) from DINET site. These have been studied and shown effective to treat POTS - it shouldn't matter if you have hyper or regular POTS. They don't work in all cases and often you have to try more than one (and increase your dose slowly) to get it to work. SNRIs (Cymbalta) aren't listed on DINET. They aren't commonly used to treat POTS, but that doesn't mean they will make your symptoms worse either. In general, many of us are sensitive to meds, so if you think something doesn't sound right for you, ask your dr or pharmacist. Selective Serotonin Reuptake Inhibitors (SSRI's) are sometimes used to treat those with autonomic disorders. SSRI's are used because serotonin is the principal neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure (Haran, 2004). Studies have shown that some patients with autonomic disorders may have disturbances in central serotonin production and regulation (Grubb & Karas, 1998). SSRI treatment can suppress the sympathetic nervous system (Shores, Pascualy, Lewis, Flatness & Veith, 2001). Venlafaxine is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. It has been reported that SSRI's may be effective in treating the chest pain that is associated with dysautonomia (Low, 2000). However, the FDA has issued a public health advisory regarding antidepressants, and they should be used with caution.

SNRI or SSRI? SSRIs are used as a treatment for POTS (Lexapro, Paxil, Celexa). They don't work for everyone, but they do help a lot of people. I don't think SNRIs are common as a POTS treatment, and not sure whether they trigger POTS symptoms..

If you can find a way to exercise without making your symtoms too much worse, it can help your recovery. Try non-cardio exercises where you are sitting or lying down.

I have noises (crunching/swooshing), pressure and fullness in my ear. I have had many sleepless nights because of this. I went through extensive tests and multiple ear doctors and vestibular rehab. After all of that, we concluded my "ear issues" are related to POTS. The inner ear plays a part in blood pressure. Usually, when you have an inner ear problem, the room spins round and round and can be triggered by just moving my head. My dizziness is more of an off-balance/floating feeling, not spinning and is more triggered by positiional changes (and not affected by moving my head). There are definitely some people that have POTS and inner ear conditions, but I also think there is a lot of room for misdiagnosis, because doctors don't know enough about either of them. There are some overlapping symptoms between POTS and ear problems and. like POTS, some ot the ear conditions are not clearly understood or tested for.

This happens to me too - I am definitely more sensitive and emotional when I am having a flare up. It feels like I am worn down and have less ability to tolerate stress/negativity.

Thanks guys. I do exercise, but realized that I could've gotten the bruise either from my shoe or from my open toed compression socks which line up right where I got the bruise. My right foot is swollen, so everything is tighter. I will definitely tell the dr if it happens again.

Do any of you get bruises when you're having pooling? I've had horrible pooling in the past. Now it's mild, but my right foot/ankle get very swollen. I'm having a POTS flare up right now and for the first time I not only have swelling but bruises on the knuckles of my right foot. I saw the dr about the swelling a couple years ago and he had no clue...I can only imagine his response if I ask about bruising. Any help would be appreciated!

I have this too, no idea why. It can be really scary. I try to ignore the strong beats, but it is really hard to do sometimes! I have the same issue with irregular heartbeats.

Firewatcher is right. I've been on bystolic (I take it only as needed) for about 2 years. That being said, it is new for a beta blocker. Most of the other ones have been around for decades. Not all pharmacies stock bystolic yet. It is supposed to control HR without lowering BP. It is helpful b/c many of us have a high HR and low BP. I was on atenolol before bystolic, which also worked well for me. As for pseudo-pheo, I think the symptoms for pheo overlap with POTS. So if you have those symptoms without testing postive for pheo, you could get the misdiagnosis. Doctors are just in a rush to diagnose us with something...glad you looked into it further and cleared it up. The one thing I don't understand is your doctor's statements about cerebrovascualar vs autonomic (I have not heard that distinction before) and his reasons for chosing toprol vs. bystolic. Usually docs can't tell which drugs work before testing them out, and as for mechanisms, usually that takes forever to figure out too! Oh well. I hope it works for you!

I am 100% Asian, but South Asian (Indian). I've never heard of another Indian person with POTS before, but in a county of a billion people I'm sure they are out there! It's cool to read everyones' backgrounds and to hear that there are studies around the world. I've read that dysautonomia is common among people who are tall/fair skinned and also people who are Jewish. Familial dysautonomia is almost only in Jewish people. As for the German/Irish, it may just be that those are the most common ancestries. http://en.wikipedia.org/wiki/Maps_of_American_ancestries

Yes, ashtanga is supposed to be invigorating. It has the complete opposite effect than what I am looking for. I leave my yoga classes feeling relaxed and calm. Often my hr is lower than when I walked in. I have had a real problem doing cardio in the past bc I couldn't get my HR to slow down after. So ashtanga is definitely not for me! And I agree that having a good teacher makes all the difference. Teachers need to explaina and be gentle and compassionate. I've walked out of class before bc someone adjusted me by pulling my ponytail or stepping on my foot. When you have proper alignment, you are less likely to get hurt and you get more from the exercises...and they are a lot easier. I am not a yoga teacher, so I defer to others here who are. I am so jealous. I would love to do a teacher training someday!

I'd recommend hatha yoga over vinyasa. Vinyasa is the flow which has faster positional changes. Hatha is more like stretching. When I started out, I only went to beginners classses. The poses are modified. So, for example, instead of doing plank pose, you drop to your knees. You always have the option of modifying in any class, but it is a lot easier when the class is slower and filled with people who themselves are learning, injured, etc. And if you go to the back of the class, noone will even see you! I wouldn't go to an intermeidate or even open level classes, especially if yoga has triggered your pots symptoms in the past. As for hot yoga, I have never tried it. It can be dangerous, even for people who don't have POTS. I couldn't exercise more than a few minutes when I first got sick, and I have built up in 5 min increments. If you have gotten sick from yoga, it might be best to do a DVD at home instead of trying whole class and just pick the poses that look easiest. That being said, yoga may not be for everyone, I agree. If you want to try it (or any other kind of exercise), I think going slow is the key.

By the way I am the least athletic person ever, but I can do a handstand and a headstand (against the wall). It just happens by itself whenever your body and mind are ready. Good luck!

I love the other responses to this post. I started yoga a couple of years after getting POTS and have no doubt it has helped me feel better. I wasn't interested at first, but a lot of people were telling me to try it. Then I got really into it and fell in love with it! It's even helped in other aspects of my life not relating to yoga - like dealing with stresses of work and family. This is great, because being worn down from stress makes us more vulnerable to a POTS spell. I have done almost all of my yoga through a studio. If you find a good studio/teacher, they are very understanding and tell you to modify your pratice however you want. You can always sit out of any pose. I do have the OM yoga CD which is good, as well as the Yoga Shakti DVD (I think it's Shiva Rea) and you can pick and choose different segements ont he DVD to create your own practice. The trick with any exercise is to push yourself gently. I think it's OK to have a few more symptoms after exercise, but if you're getting migraines, having to spend a day in bed, etc., then you're probably pushing too hard. Doing some of the more active/challenging poses is great for building strength. But there are lots of ways to enjoy yoga seated or lying down which I think would have few if any effects on POTS. You can get in all of the different types of poses - forward bends, back bends, twists and inversions without even having to stand up. Legs up the wall is one of my favorites, and a great way to get blood back to your head. I could literally stay there all day sometimes! I hope you find a way to do yoga that works for you.

I used to take atenolol 1/4 or 1/8. Now I use bystolic. both are mild.

Medically it can be taken as needed - it's not like an SSRI or Florinef where it can be dangerous to miss a dose. It may or may not help you if you take it as needed. I have it and used to take it only occasionally, as needed. I didn't need it every day.

maybe the other way around...if you have somethign autoimmue going on, it could cause your autonomic system to go haywire...

I used to get them when I was on florinef and others here have posted the same. At one point I had my nose cauterized and that helped. Hope they stop soon!

I had several amalgam fillings. Some of them I've had to get replaced b/c they cracked. Some are still left. Some people have previously posted about having all of their fillings replaced. I don't think it helped any.

Can the cardio recommend a CP or local cardio to work with him? Otherwise look for an internist or cardio that is willing to work with you. I took me several tries, but I eventually found a doctor that knew a little about POTS and was willing to listen to my ideas. That has worked well.

sometimes when I wake up from sleeping, it feels like I am putting too much pressure on my head/neck - like the top of my back and shoulders aren't even on the bed and my head and neck are holding me up. When I sleep on my face, the same thing happens. It's painful and the funny thing is that it mostly happens when my POTS is acting up. I have a feeling there is a connection. Does anyone have this or know how to make it better? I'm positive I don't have EDS by the way...

what meds is she on? i think it is a side effect of florinef. Definitely talk to your dr/pharmacist, esp if she is on meds which increase BP.

I've had the same experience as Flop. When I first got POTS taking the stairs used to make me very sick. After a while I started practicing and then I got the hang of it. Going slow and climbing the stairs 2 feet at a time helps too. Though if you can find a house without stairs, that is always better!

Sorry for your experience. I am sure there are some good ones out there, but many of the career services folks I've dealt with have been pretty awful. The ones at my school helped noone to find a job....some "services" they provide!

It takes a while for salt to build up in the system and so what you have that day doesn't necessarily kick in right away. I drink broth every day,twice a day, and if I miss a couple of days I might still feel fine. But a few days later all of a sudden my symptoms get worse and I know I need to get back in my routine. If florinef is helping your son, he can probably benefit from "extra" salt in his diet. By the way, that doesn't mean he has to kill himself adding salt to every little thing - either take the pills (if he can tolerate them - I can't) or find salty foods he likes. You also have to be careful with the fluids, because too many fluids can wash out the salt. I know it is all very confusing!