imapumpkin

Thanks for the responses, everyone. I emailed my dr and she said I should be fine. I just wanted to double check, it's my nature to be very cautious about anything meds related. Although, I do feel like every time I ask a question to my doctor she reacts like I am second guessing her when really I just ask a lot of questions because I want a lot of answers and what to make sure I am understanding everything. She's the only doctor I've been in contact with with knows anything about POTS so I want to learn as much as I can. I won't be seeing her again until March so until then I'm not quite sure what to do next. I would be willing to ask her about a selective beta blocker-- anything to get my energy level back.

Two weeks ago I saw a Neurologist who specializes in Dysautonomia. She put me on a low dose of propranolol, 5mg 2x a day (10 mg daily). For a whole week I felt like I was slowly getting back to a much better energy level. Then I started to get parasthesia in my hands and arms and then in my feet and eventually in my face so one week later, she told me to go down to 5 mg a day. My energy was less than 10mg but still better than with no beta blocker. Then I started to get really bad low blood sugar late at night. No matter how late I would snack, between 1-3 AM I have been getting really intense stomach noises/gurgles and some nausea and I've needed to keep saltines or cereal by my bed to continuously eat to calm my stomach. When I emailed my doctor about it this morning she told me to stop the propranolol because I don't seem to tolerate it even at extremely low doses. I feel like this is a huge failure for me. I have always been sensitive to medications, and the beta block was initially really helping with my energy level. Now I am back to square one and don't know what the next course of action will be. The dr said to give her an update next week. I'm told most people with POTS do much better on beta blockers but now that seems to be no longer an option for me. I'm also an extremely anxious person and I'm nervous about stopping the beta blocker because I keep reading everywhere (including on the medication bottle itself) STOPPING THIS MEDICATION SUDDENLY CAN LEAD TO CHEST PAIN OR HEART ATTACK Intellectually I know that my doctor wouldn't tell me to simply discontinue the propranolol if stopping were to put me in any danger but in my hyperanxious brain I'm freaked out that I'm going to have a heart attack. Has anyone else tried and failed beta blockers and if so, what other treatment is out there? Also does anyone else get really anxious about their POTS symptoms particularly the cardio ones? I'm always irrationally scare my hearts going to give out because it's being so overworked.

thanks guys.

My doctor is a neurologist who specializes in dysautonomia so she sees people even worse than me and knows how debilitating it has been. We are working to see what treatments will work for me. As far as POTS shouldn't be disabling, well it wasn't for me until this summer, but it sounds like your doctor is misinformed about the condition haha. I only just got an appt with my doctor for the first time last week so I really am at the very beginning of the treatment plan and will just have to see how things go.

I am a 24 year old with POTS syndrome and unfortunately have been unable to work since July. I had to move back in with my mother and have been unable to be independent because my POTS is really bad at the moment. I saw a specialist and am working with her to try and get back to being high-functioning. In the meantime, I am having to rely on a great of support from my mother because often I am too sick to drive and function on a normal adult independent level. I am feeling especially bad about all the help i'm needing, because I just want my health and independence back and i don't know what i'd do if i didn't have someone taking care of me. My boyfriend lives in a different sate and can only be around to help every few weeks and I even feel bad that he should have to take care of me instead of being able to enjoy spending time together. Luckily he has been very good about helping. Does anyone else feel guilty for needing to be taken care of? how do people take care of themselves when they don't have someone to help?

Just a general feeling of unwellness, upset stomach, general discomfort, anxiety. I've heard that sitting in front of the motor (first class) can be less irritating than coach. the symptoms pretty much disappeared after we landed.

I'm feeling so discouraged today I don't know what to do. A week ago today I saw a neurologist who specialists in dysautonomia and she was great and proactive and put me on propranolol, two low doses a day. The very next day I could feel a huge difference in my energy level and my overall feeling of well-being and I was starting to feel like maybe I was turning a corner and going to be able to start exercising a little, driving myself places and making plans with friends, and maybe even start to get my life back on track. Then on Sunday I started getting parasthesia (tingling, "falling asleep" sensation) in my hands and by Monday it was in my arms as well as my feet and legs. My doctor told me to cut back to once a day on the propranolol so I did..today was the first day and I feel terrible. My limbs feel like lead again, I feel exhausted and spent and the worst part is, I've seen the other side, I know I can feel much better on the regular dose but the stupid tingling is preventing me from taking the meds that were making me feel so much better. I feel like I took a huge step backwards and I'm so discouraged, I was so happy the beta-blockers were working. Has anyone else experience parasthesia on beta blockers? Does it go away?

Alex- I've had low bp to begin with and the pots obv makes it worse...my doc only gave me the beta blockers and has me monitoring my bp and sending her weekly readings.

thanks Potsie! i'm glad propranolol has helped you! I hope I have good results with it as well.

in a stroke of luck that was almost miraculous, i was able to see a dysautonomia specialist yesterday. she put me on a low dose of propanolol for my POTS and I know that is a typical course of action for patients. I am just confused as to how beta blockers reduce the fatigue symptoms. I know they curb the tachycardia so as to "give your heart a break" so to speak, but they also lower your blood pressure and we already have very low blood pressure, so how does that help with fatigue? Also it says all over the label causes drowsiness, dizziness, weakness, all of which are the fatigue symptoms i am trying to overcome. I have take my doses and already noticed it helping with my tachy, but I feel totally baked. Could anyone help me understand how beta blockers reduce fatigue of POTS while causing their own in side effects?

thanks for all the replies, guys. i want to try it to see if it relieves teh chest pain and some fatigue. my friend goes for her anxiety and since i also have anxiety (which isn't helped by the pots and def doesn't help the pots) i wanna give it a go.

hippychick-- always..and lightheaded as well. often i have to crawl to the br

Has anyone else experienced intense nausea when having bad tachycardia? twice in the past week my heart's been hammering at my ribs and it's made me really nauseous, and last week I was throwing up because being upright made me really dizzy and my heart was racing. Has this happened to anyone else? I feel like I'm getting worse. I was doing better for the second half of August and the first part of Sept but seem to be declining in energy as the weeks go by. I am resting and taking it easy and trying to go for short, easy walks for only 8-10 min on some of my better days but I can't think why it would be getting worse and worse.

Try SmartWater also, it has electrolytes but none of the sugar in gatorade that might upset your stomach. I asked a similar question about acupuncture, and I know it is good for anxiety so i don't think it will negatively be messing with your nerves, but I don't know if it will do anything for dysautonomia.

matt-- i get where you're coming from with the cancer comment, although i dunno if i'd go that far. certainly i'd rather trade up for a medical condition that the healthcare industry 1) knew a great deal about and 2) knew how to treat, even if the treatment was unpleasant. Last week I think I said I'd give one of my feet to have energy again but of course life doesn't work that way...but with cancer there's a large risk of the disease being fatal. and although dysautonomia i think causes us to live limited, sick lives dealing with the symptoms, at least we can be reassured that it is not a fatal condition.

I say "fine" a lot because I don't want to go into my life story about being chronically ill... but another one I use all the time is "tired." No one really thinks it's a weird answer and it's an honest one. There are millions of reasons people can be tired so well-meaning coworkers or acquaintances don't usually ask why. If they're close friends I'll be honest and tell them if I'm feeling awful.

I dislike waiting as well...do you think seeing a regular neurologist in the meantime would be helpful? as for traveling to see a specialist... i have an HMO so I really can't afford to see someone out of state but if I did it would probably be in CT or NY and I wouldn't go to Virginia because VA/MD/DC is where I got my flare up and a huge trauma in the first place so I'd love to never go there every again (although fun fact dramatic irony--there's a POTS specialist one street over from where I was working in DC when my flare up occurred. Whee.) My guess is I'd have just as difficult a time getting an appointment with a specialist out of state and wind up having to spend way more $$$ that I don't have because I can't work so I'm just going to have to suck it up and wait for one of these specialists to get back to me. I just wish they were a little more professional about it (and less rude). I'm sure it makes no difference to them when they get back to me but it makes quite a difference to me.

So I have been trying for weeks to get an appointment with a dysautonomia specialist. First they tell me I have to fax over all my information, diagnosis, Dr. notes so he can "review it" and then get back to me to see if he will see me and then they will contact me and make an appointment. I have called several times to follow up and was told they were supposed to have gotten back to me last week. When I called today, the rather rude receptionist told me they're "trying to find a time" and will get back to me. I asked her if she had a timeline or a ballpark estimate of when they would be in touch with me. She told me "he has to review your information and they need to find a time because he's booking really far out"...I was like "No, I was asking when you thought I might HEAR back not when you think I might get an appointment" and then she just repeated the same sentence like I was an idiot. I've had a crazy boatload of medical issues throughout my life and I've never, ever not once had to wait weeks and weeks just to hear back about and appointment. Even in the physician is booking very far into the future, a receptionist or secretary will just look at the calendar and find an available date in a matter of minutes. I've seen postings on this forum that this doctor's office is notorious for not getting back to patients,***** it, and I called Dr. Hohler is Boston instead and will try and get an appointment with her. I don't understand what takes so long about just getting back to me about an appointment. Every day that passes that I don't have an appointment is one more day I can't work, one more day I have to worry about losing my health insurance next year, one more day of wondering how long it will be until I can get treatment and help and answers to my questions. Life's too short for this crap, especially when you're sick and already feeling like you're living a half-life. Sorry, I just had to get out my frustrations. I'm sure they are in no rush to see me, but I sure as heck am in a rush to be seen by a specialist so I can get on with my life.

Since it's taking me a hundred million years to get an appointment with a POTS specialist, I'm trying to find things in the mean time that might relieve my symptoms and get me functioning again. Has anyone had any experience with acupuncture and if so, did it help your dysautonomia at all?

YES. SEE A NEUROLOGIST. One who SPECIALIZES in dysautonomia. Your treatment will be different because POTS can be caused by different things but it is a dysfunction of your autonomic nervous system, it's not just that you have orthastic intolerance--they are not the same thing even though POTS causes orthastic intolerance. Getting an official diagnosis will not only help doctors treat you but you will become more familiar with how to manage your symptoms. ALSO, it's helpful to know that it's POTS because it doesn't just affect your blood pressure, it affects many facets of your health. For instance, if a Doctor or Dentist knows you have POTS (and actually knows what it is) they won't give you Novocaine or epinephrine which will seriously screw with your ANS, and you have to be much more careful going under anesthetic because it's a neurological rather a cardio problem and you will need to be more closely monitored during surgeries, etc...all good things to know for future treatments. I'm not sure why your Cardiologist would tell you that POTS is basically all Orthastic Intolerance because it's much more complicated than that and by refusing to actually diagnose you with POTS even though he says that you "basically have it" he's denying all the neurological aspects of the condition that need to be addressed. If you went through the checklist and really feel like you fit the criteria for POTS definitely try and see a neurologist who specializes in POTS or Dysautonomia, the doctor needs to be treating the whole picture. Good luck. Here's the list from the website: http://www.dinet.org/physicians.htm

Pools are actually really helpful for me as well. My body just feels better immersed in water...maybe its the weightlessness or something. Spinner-- Thanks for you words of encouragement. I actually found this specialist through this DINET and a lot of people on this forum have seen him and said good things, I just didn't realize there was such a strict "application process". Christy- thanks for the suggestion I will definitely try the email approach.

In the past whenever I felt potsy (that;s what I call it when I can feel my symptoms creeping up on me) I would go to the gym and do my 15-20 min of aerobic cardio because I can't really tolerate much more than that. That was when I was high-functioning. After my traumatic summer and huge flare-up, I tried to start building my stamina back up and would go for very low-intensity walks around my neighborhood for maybe ten minutes. I did this for acouple weeks and then I finally started feeling like my endorphins were pumping again, it felt good, I wanted to walk further, faster, a little longer, so I did, and I thought if i pushed myself a little I'd increase my stamina. Instead I totally screwed myself over and was without energy for the next 5 days and still feel like I can't walk further than the end of my street now (This was over two weeks ago). Grocery shopping is too much for me. Understand that I have never had a flare up before and I'm feeling really lost. Before this summer I would get tachy and was chronically fatigued, bothered by temperature extremes and other minor inconveniences, but I have never been down for the count like I am now. I feel like there is no light at the end of the tunnel because I've never had a flare up I don't know how long they last, what to do to manage it, and what the fine line is between not letting myself decondition and pushing myself too hard. People (my own boyfriend included) don't understand that just because i don't LOOK sick, doesn't mean i don't feel terrible and depleted of energy all the time. As a special icing on the cake, I finally decided enough was enough and tried to make an appointment with a neurologist who specializes in POTS and dysautonomia. All the websites said he accepts new patients. When I called, the receptionist told me my PCP had to fax his office all my information, diagnosis, notes, tests, etc that he would "review before deciding whether or not to see me". Big problem? My PCP hardly knows anything about my POTS--I don't discuss it with her. My cardiologist who I see for a mitral valve prolapse diagnosed me with it and he treats me and I've always called him with questions about the condition. This specialist is one of only 2 specialists in my state that I have found. I don't know what to do if he doesn't deem me an important enough patient to see, because I need help I can't manage this on my own and my PCP doesn't know anything about dysautonomia and my Cardiologist can only do so much since it isn't a cardiac issue. I just need some help from someone who knows about my condition and can help me through this flare up. Has anyone else ever been told "no" by a specialist in dysautonomia?

gatorade is not necessarily better on an empty stomach especially because it contains so many sugars, it might make your GI tract a little wonky. gatorade helps me a lot and for a while i kept a bottle near my bed and drink it throughout the night, but the next morning my digestive system didn't feel too hot.

My energy level has been in the toilet the past few days and has been getting worse. Standing upright for any period of time was a struggle today. I've trying to use external pressure stockings to keep my blood from pooling but this afternoon as I was visiting with a friend, out of nowhere I got all these little red spots on my leg and hand. Thank god for me, my friend is a 3rd year med student and he said it was petechiae. Could this be from the pots? I'm freaking out because everything I'm reading about it online says get it checked out ASAP it could be caused by something serious and of course this kind of thing only happens to me on nights and weekends when I can't see a doctor. Any info you have is appreciated i'm freaking out!!

Thanks for your replies. My sleep schedule is WAAYY off because I feel so much better at night I stay up very late and then sleep well into to afternoon. Since I worked in a bar for the past 2 years this wasn't a problem but I'm trying to get back on a normal(ish) schedule and I feel like whether I get 6 hours of sleep or ten I'm still exhausted the next day. I'm sure anxiety and adrenaline are not helping my case...I'm taking klonopin to help me deal with the anxiety after the trauma which also makes me even sleepier. I'm trying to tread a fine line between giving my body the rest I feel like it needs and not coddling it so I decondition. In the past (when I was high functioning) if I go several weeks without exercise I find my energy level goes down because my body is deconditioning but this is a whole different ball game because even if I do go for easy 15 min walks I feel tired and my doc said no hard exercise so I'm getting none of the good endorphins that make me feel better. It's also frustrating because my doctor offered me no suggestions on how to handle this or try and help improve it. Since I've never been this badly affected, I think its time to see a neurologist who specializes in Dysautonomia.