Lethargic Smiles

It is interesting to see how many of us quit drinking caffeine inititally. Prior to my diagnosis (I searched for 4 years and back then, I just thought a resting HR of 95 was normal) I'd max on caffeine... we're talking popping caffeine pills (200mg) throughout the day. It really effected my resting heartrate, but my standing heartrate didn't get worse. About 6 months ago I started really limiting caffeine because I didn't want the "false" energy and I didn't want anything making the tachycardia worse when I'm taking beta blockers to slow it down. I recently have added caffeine back and I am so happy about this decision! Too much caffeine (100mg or more) at a time increases my tachycardia quite a bit, to the point it isn't worth the extra energy or vasoconstriction. However 40-70mg (I know big window) does the trick for me. It slightly increases my heartrate, but not too bad, and it gives me a little boost. I do notice blood not pooling so easily in my legs after taking caffeine, but not so much that I would proclaim caffeine a miracle drug in my case. I take it in the form of caffeine pills cut into smaller portions most often (I love coffee but have easily stained bonding). I am switching over to guarana tablets soon which naturally has caffeine. Jan -- I think that is an excellent thought on when caffeine may help versus when it may hurt.

GN -- I love your attitude about work. It took me about 4.5 years to come to this realization, and I still sometimes think things such as chores should be put ahead of resting.

You're very welcome. At Mayo, I got one step closer to finding the root of my POTS, (finding out I didn't have nerve damage and my norepinephrine levels go nutty when I stand) and to me that is very important. From what I see, most autonomic centers can do the same thing for you and everyone has different preferences. I will say I didn't like how a particular autonomic center didn't put the patient in a quiet, dark room for the baseline blood draw for endocrine testing. Anyways, I'm rambling. No matter where you choose to go, I hope you are able to get some answers!

The doctors as Mayo Clinic discouraged scheduled infusions (unless someone literally is incapable of consuming enough fluids for whatever reason) because they said the body can become dependent. Also, daily infusions would more than likely result in a PICC line which increases the risk of infection. While in some cases this risk is worth the pay off, it isn't worth the risk if someone can get enough fluids orally. I have a standing order for fluids as needed from my PCP. On days where I am nauseous and cannot get enough fluids, have been vomitting, or just have been having a flare, I call and get an appointment to get fluids at the hospital. I don't have to bother with doctors thanks to the standing order. If I need them twice in one week, that is fine. If I go a month without them, that is fine too. I just go by what my body is telling me. The reason for the order reads as "severe dehydration due to Postrual Orthostatic Tachycardia Syndrome". If it is during the day, I make an appointment and go to an area of the hospital devoted to IV medicine. If it is at night, I go through the ER. The nurse can just take my vitals and start the fluids without talking to an ER doctor since I have standing order. I don't even have to see an ER doctor unless I was there for something in addition to/besides fluid. It is wonderful. Fluids definitely help me when I get my sodum/fluid ratio out of whack, am having stomach issues, or am having a really rough flare. There have been times during a flare where I've gone and gotten them and they didn't help which tells me I had enough oral fluids. Have you had a 24 hour urine collection? I used to think I didn't properly hold on to fluids. It turns out this was because I wasn't consuming enough sodium (this suprised me) and all the water I was drinking wash washing away the sodium I did consume. Without enough sodium, my body couldn't hold on to the water. Once I adjusted my sodium intake, I found I held on to my water and felt dehydrated way less often.

Could you add options to the second two questions that say "I don't work."

I went to Mayo Clinic. They were able to help me understand what is going on in my body a lot better, but unfortunately unable to get me back to my life. If I could do it over again, I would still go because they did a lot of valuable testing. I wrote in detail about my experience with each test and recently wrote a post about my experience getitng into Mayo if you're curious about what to expect. http://lethargicsmiles.wordpress.com/coping-with-illness/mayo-clinic-experience/ I also wanted to add I've had better luck with electrocardiophysiologists than regular cardiologists.

I know this isn't answered in my blog, so I just wanted to say that this treatment will slowly take the place of medications. Dr Kyprianou is really knowlegable about medications and their mechanisms of action (many drs look at me like oh **** when I start talking "mechanisms of action") and even really obscure supplemets. I was pretty impressed. In no way do they claim to be an instant fix, which I like. As I improve, I will probably notice my medication slowly becoming the wrong dosage (heart rate will be too low/blood pressure will be too high). It's not like I will wake up one day with a pulse of 40 or something, I will slowly notice it getting lower and lower and can work with the prescribing doctor to adjust accordingly. It took awhile for me to get this way, so anyone claiming they can rapidly make me better raises quite a bit of skeptism! It will take an hour of my time every day for 6 months to be feeling quite a bit better.

I'm going to come back to this after I am back from Dallas because it is kind of a detailed answer. It's late so I'm low on energy and am not supposed to stress myself. In short, your parasympathetic system beingin control will become automatic. Right now, I have to focus really really hard to get it there and pretty quickly after I quit focusing, it goes back to sympathetic (as evidenced by biofeedback meaures). I think a lot of your questions make be answered in my most recent posts, but either way, I will come back and answer them in more detail here! In the meantime, here is the homepage of my blog where I have written 5 posts on my experience so far. The improved circulation I have experienced so far has helped in a lot of ways, but most noticably with blood pooling -- no more purple feet! This is even with having a mild case of EDS type 3! Please continue asking questions everyone. I had so many questions before coming here and felt like people said it made them feel better, but never fully explained, so I had to just take a leap of faith. http://lethargicsmiles.wordpress.com/

AK girl, there is a whole support group that patients join once they start the program, and it is full of people who have been helped. I myself have seen a few improvements in just a few days thanks to my circulation being much better. I was hopeful, but skeptical, and I am very happy with my decison to try it. I have met one girl in her second week who went from bed bound to being able to walk. I'm not sure what you mean by not being able to go longer than a month. It is only a 2 week program (5 days a week) and then patients continue treatment with equipment at home. There is a program for local patients that is a little less intense as they can come visit the office regularly. That said, I'm sure there are people it doesn't help as much as it has helped many, but I think anything is worth a try.

Hey guys. This is a double post, but I wanted to get this information out on both threads where I talked about going to the center and people expressed interest in knowing how it goes. I'm on day 2 at the center and day 1 of actual treatment. I have blogged about it, but not gone into great detail about the specifics of what she does yet as far as the components of treatment but I promise I will when I have energy. I know a common complaint (including one of mine) is the testimonials say how much "it" helps without explaining what "it" is. That is probably because "it" is several things. I just wanted to say it doesn't matter the cause of your POTS for this treatment because in all cases (as far as I know, please correct me if I am wrong), the autonomic nervous system is malfunctioning and the sympathetic system is over activated. This is a cause of a lot of the symptoms so learning to control the ANS into a parasympathetic state, rather than it controlling you, is beneficial regardless of the cause. The idea is the body may still try to activate the sympathetic system, but I will be able to recognize it and control it. Nerve damage or not, you can control your ANS more than you'd think. It may not make us symptom free, but I do believe everyone would benefit from having this skill. Here's the first blog on my consultation, there is one more posted as well on my educational portion. http://lethargicsmiles.wordpress.com/2013/07/22/day-1-pots-treatment-center-consultation/

Hey guys. I'm on day 2 at the center and day 1 of actual treatment. I have blogged about it, but not gone into great detail about the specifics of what she does yet as far as the components of treatment but I promise I will when I have energy. I know a common complaint (including one of mine) is the testimonials say how much "it" helps without explaining what "it" is. That is probably because "it" is several things. I just wanted to say it doesn't matter the cause of your POTS for this treatment because in all cases (as far as I know, please correct me if I am wrong), the autonomic nervous system is malfunctioning and the sympathetic system is over activated. This is a cause of a lot of the symptoms so learning to control the ANS into a parasympathetic state, rather than it controlling you, is beneficial regardless of the cause. The idea is the body may still try to activate the sympathetic system, but I will be able to recognize it and control it. Here's the first blog on my consultation, there is one more posted as well on my educational portion. http://lethargicsmiles.wordpress.com/2013/07/22/day-1-pots-treatment-center-consultation/

Just an idea.. Have you tried putting them on before ever getting out of bed or standing up for the first time in a day? I have best results when I do it that way.

Complete tangent... Mighty Mouse, I love behavior analysis! It works so well and provides a way to measure results.. I have my bachelors in psych and hope to get well and go back and get a counseling degree. My favorite approaches are behavior analysis and cognitive behavioral therapy.

Chaos, what's a SOAP note?

The autonomic neurologist I saw, Dr. Fealey, was at Rochester Minnesota. I had a good experience with him and also with the cardio electrophysiologist whose name I will have to look up. I will definitely keep everyone updated!

Don't feel silly! You were smart to try and figure out the root cause from the beginning. If it hadn't gone away, you'd be so grateful to yourself for that effort. Congratulations on the negative tests. Does your supine to standing pulse still jump? At Mayo, the only test that showed autonomic dysfunction in my case was the supine in a dark room for 30 minutes versus standing blood catecholamine levels.

Of course I'm not sure where you're referring to, but I'm guessing it isn't Mayo based on my experience with how they do appointments. If it is, message me! I don't think asking if anyone has experience getting appointments extended or tests ordered at a particular clinic would be considered defamatory and your answers will probably be more helpful.

MightyMouse that is awesome you received an apology letter! In my case I didn't recieve an apology, rather I was informed of the doctor having to go before the board. I think they may have been fearful of me suing if they acknowledged wrongdoing. I wouldn't have sued, but I would have really appreciated an apology!

I agree with writing a professional letter. Personally, I'd write two. I would write on to the hospital board explaining the doctors behavior and stating you wanted to make them aware because no patient deserves to be dismissed (and explain how you were indeed dismissed since she was wrong about things). Then I would write one to her saying what you need to and informing her you've let the board know about your concerns so hopefully they can work with her to resolve this issue. I've written a letter before for very major negligence where I was actually harmed due to a doctor, and she had to go before the hospital board and explain herself.

Welcome!

I'm interested! Especially in the peer-reviewed ones. Thanks in advance.

Derekliz, would some doctors have reservations about ordering a drug for patients from Canada? I really want to take this!!

I'm happy you made it and even happier your family was surprised to see you because that means they're understanding people. To me, no matter how sick I am, having the support of not only my immediate family, but extended family as well, has been priceless. It means so much. I cannot imagine being this sick and being one of these people whose families don't believe them. Storms make me achy and I believe it is due to the pressure dropping when it rains.

Rama -- I'd love to hear about your experience long term with this. I make my own lotions with all natural ingredients and have been thinking about adding caffeine to them for anti-cellulite properties. I hadn't even considered it'd help my POTS!

Sheila -- I've often wondered in the past how I manage to get dehydrated even though I drink a ton. At Mayo clinic they said if the sodium and fluid levels aren't balanced, it can be difficult for the body to hang on to fluid and we may wash out the sodium. I recommend a 24 hour urine test to look at your sodium levels. I need to repeat this as right after I had it done and was told the amount of fluid to decrease by and amount of sodium to increase, I didn't get dehydrated but lately I have been again. Justin -- I cannot imagine having a bladder infection that long and being in so much pain I didn't notice it. I always notice them right away. What a tough woman. Oh my goodness!! Your poor wife. Send her hugs from me.