darren

I am the opposite, I tolerate it very well and in fact sometimes it helps me get through situations that would normally trigger a bad bout. First I should add that 13 years in the military I would say I have a very high tolerance to alcohol. Needless to say I don't drink like that anymore. If I'm in a social environment that is really loud (like a restaurant) or a busy surrounding it almost always triggers pots symptoms. In these cases a couple of drinks sufficiently numbs everything out enough to make it tolerable. It really messes up my sleep though so I don't go from having a drink or two to going to bed I always end up waking at 4am which makes for a couple bad days in a row. So moderation, followed with some water is beneficial to me. Not to mention my first signs of crashing involves me being really cranky, it spares others from sitting with the grump.

I was a helicopter pilot in the navy before being diagnosed with graves and somewhere after the ablation I came down POTS it took 2 years to get diagnosed and separated from the navy. I do web development out of the house now. I knew I was in trouble long before my separation from the military so I started training myself.

I did not tolerate florinef either. It gave me daily migraines and made my face round like a ball. I've pretty much come to the conclusion that unless I can definitively tell the medication is helping me I don't take it because the side effects give me so many problems. An example is when you hear someone say, "I think its helping me". If I don't know I stop taking with it. I've gotten to the point where I was just over medicated. I take midodrine, ambien and my synthroid now. That's it.

I don't have the issues to the same extent but when I start to crash it starts in my voice first. Sometimes I can't get words out and I feel like something is stuck in my throat. I make these ridiculous coughing/hacking sounds. My family can tell even on the phone.

I can not do squats at all. I have the exact same problems you have, I'm fine while doing them but later I pay a heavy price sometimes a couple days. I have all sorts of theories for all of my symptoms but here is my squatting theory. The leg muscles are the largest muscle group in the body. When any muscle is exercised it needs allot more blood flow. Not just during the exercise but during the recovery. Since resistance training is essentially creating micro tears or damage to the muscle fiber in order to build them stronger there is more blood in your legs during recovery. Add to that the blood has to work against gravity to return to the heart (our biggest problem). Here is another interesting part of that theory. Glycogen is stored mainly in the liver and muscle groups, its the reserve carbohydrate source for the body. Glycogen also has a heavy bond with water. Meaning to convert the carbs you eat to glycogen it needs to bond with water. Well now you've depleted your glycogen stores and the body has to build it back up. It takes the water from your blood circulation to convert and store that glycogen. Less water in the blood stream means a lower volume of blood. Lower blood volume is a lower cardiac output this = bad day for us. The reason why you probably feel fine during the exercise is the fact that resistance training bumps up orthostatic tension in a big way while your working out. I wrote about my working out theory here. Like most of my ideas I'm sure there are holes in them but it keeps my mind at ease to at least try to think of reasons why this happens. I have not found a way around this squating issue, which I hate because I really miss my leg work outs.

There was a story on Fox news about this tonight. They were saying the drug companies have been understating the negative side effects mostly the withdraw symptoms when trying to stop. I was on an SSRI for about 6 weeks. I didn't feel it was helping and didn't like some of the side effects. I just stopped taking them with no problems but that was probablly becuase I wasn't on it long enough.

No tammy your not missing anything pots is just a big bucket of irony. You can't sleep but your tired all the time. Can't tolerate exercise but if you don't exercise it makes it worse. The same with coffee or any stimulant. It can help kick the fatigue but it can also make you go tachycardia. It all comes down to a dysregulation of the autonomic nervous system. For most people the sympathetic and para-sympathetic pathways are in check (fight or flight vs. sit and relax, digest food). One is more active than the other for "normal" people. However for POTS they are constantly fighting each other and both are trying to be active at the same time and it varies hour by hour. So while coffee can help kick the fatigue it can also make you tachy, dizzy, nauseated and of course dehydrated. Tearose, I can't go without my strong coffee its just one of those things I should part with but I'm too hard headed to do it .

I can't function without coffee either but it does dehydrate me. You wake up in a dehydrated state, especially in the winter with all the dry air sucking the moisture from you. You lose allot of water through respiration (I don't remember the percentage). So waking up and chugging coffee helps for a little but always left me in worst shape a couple hours later. I developed a new routine of drinking a liter of water in the morning as soon as I get up and waiting about 20 or 30 minutes for coffee. Sometimes the wait is painful but it has really improved my symptoms.

Thanks for the words everyone. I'm going with your advice tearose. I'm just going to find a primary care doc that can manage the symptoms. Maybe farm me out to a specialist. My wife says I would like her doc so he must be ok as I tend to find reasons to not like people

It is very much related. Your brain only needs a small percentage of the blood supply that it receives to keep the cells alive however there is a huge buffer there in case of emergency. When I say huge the numbers are around 10-20% of normal blood flow (don't remember exactly). So if you lose 80% of your blood volume (aka pressure) your brain is still fine. Your not though because you have passed out a long time ago. The point where your brain decides to take measures to keep blood flowing is somewhere around 10% (again this is off the top of my head not true numbers). So if you lose 10% of your blood flow to your brain your gonna pass out. Why? Its a safety mechanism. The quickest surest way to increase blood flow to your brain is to reduce the force of gravity that has to be worked against so you go horizontal. Its the same reason you get tired before you pass out its your brain trying to get you to that horizontal position to increase blood flow. Its the only way your brain knows how to do it on its own. The human body is an amazing resilient thing it hurts us the most when it acts against itself like with POTS and cancer. The body knows what to do better if we break a bone or get shot than it does if it is acting against itself.

Before I got sick I never really understood the "doctor's playing god" phrase. Now I understand. If they can't find a physical reason for what you are going through they will label it under mental health. There are two really interesting points to this first nearly all of the symptoms for dysautonmia will flag you for mental health simply because they are the same symptoms. Second your life is brought to a grinding halt and you can no longer do any of the things you enjoyed and you're having a hard time taking care of yourself it is depressing. There is such a thing as being in a crappy situation that *****, its depressing. Nobody would not register enough symptoms to get flagged for mental health issues in your situation. If your in a situation like this and your smiling talking about what a grand day it is and how pretty the flowers outside that would suggest to me there is a problem. To make it even worse I have no doubt that stress flairs up my POTS symptoms. Being in a stressful situation causes all sorts of chemical process to change inside your body. It isn't a mind thing its a chemical thing. You can't argue with it. And to top it all off when you feel terrible you don't even want to deal with the doctor. Just making a call for an appointment is too much. I have been sent to a psychiatrist for a conversion disorder and diagnosed with POTS two days later. I think that Dr. still thinks I'm making it up. On top of that after having an 8 page study done that diagnoses me with POTS I had a neurologist tell me I didn't have it after 10 minutes without reading the study! Its all a numbers game to them (the docs) that is how they train. The chances of you having a rare physical condition are far less than having a mental condition that makes you think you have a physical condition. Just by playing the numbers they can get it with 80% accuracy or more. On top of that they don't even understand how to diagnose you in the first place so if they try they will miss the mark. I know your tired, out of fight. There is nothing that can be said to make you feel better because you feel terrible and its physical not mental. It takes us a little longer to get the wind back in our sails after being knocked down but you will get up. I can only say this because I actually feel good today so thought I would get it out. The EEG, it was actually a heart harness I wore for 24 hours is what actually flagged the doc that there was a problem. It was only after literally months that I got her to send me out for a tilt table test. The thing about POTS is it changes hourly. Its like trying to get your computer fixed for a problem that only happens sometimes and you can't replicate the conditions.

Thanks so much for the compliments. My history is off I should of said 17th century for the stockings thing . I find writing about this stuff to be very cathartic. On top of that things change so often that we often forget what we tried and how well it worked. If I write it down there is at least some record of what was going on. I've thought about writing occasionally. Its allot of love to put into something that may or may not work out (statistically not). I might look at it more though, I appreciate it. This kind of treatment puts anyone through a full range of emotions. From, "maybe I am crazy?" to "I should of stuck up for myself in there". The only logical thing to do is check this one off the list and move forward to try something else. Giving up or quiting is not an option. I'm not saying I made phone calls for new doctor yesterday and I probably won't today. I can't spend every waking minute chasing the magic doc but if I don't look today I will on Monday. Three huge points I learned here. - Don't bother seeing anyone who doesn't specialize in this condition. I can get a primary care doctor to run refills but for real changes to my health I'm going to have to travel. - I'm going to sit down and type out my medical history. So many times I have been to see a doctor and they have asked when i was diagnosed with this and that and what I was taking, when and how much, what my symptoms are. Half the time if I felt great I would forget some of this information but if I'm crashing prior to the doctor's appointment I won't remember much. I end up having to think about it and really not looking like I know what I'm talking about. Next time, I come in the door and I had the doc a couple pieces of paper with everything on it. Would this of helped me with this last doctor? Nope, this one was a lost cause. - I'm actually thinking about recording the interview portion of the appointments. Yes some of it is to show others how ridiculous some doctors are but mostly so I can remember the good stuff that was said. My last doc (the specialist that doesn't exist) would spend an hour and half just talking to me about what is going on with my body and what I can do to help. Sure I remembered the high points but there are details I just don't remember. I wouldn't hide the fact that I'm recording, just let the doc know that sometimes I don't remember details very well and place it on the desk. This might have negative impacts on the visit so I'll have to think about it. Thanks again. Hopefully you got some chuckles and maybe even raised your blood pressure a bit since that is a good thing for some of us. Oh he was a neurologist btw.

Thanks for the replies. I know this is pretty common for everyone here at DINET but when I tell my family and friends they can't believe it. To be honest Lina the stockings thing was all that kept me from losing my temper. In my mind I was about to explode but then a little voice in my head would say, "stockings?" I had very low expectations based on previous experiences so I suppose that helped. I actually had a military doctor try to label me with a conversion disorder and two days later I failed the tilt table test horribly. I am more angry at this doc because I had actually been diagnosed with something and he read the report but told me I didn't have POTS. I would say looked me in the eye but he was unable to hold eye contact with me. At least from an analytical point of view I can see how the military doc wanted to explore a conversion disorder because I would argue with her every week there was something wrong but yet she couldn't find anything. I'm sure most of you have two or three stories just like this or worse.

I?ll bet this will come as a shocker to those of you who have POTS and see a specialist that deals with POTS patients ? there is no such thing as a POTS specialist! Thats right, I had a doctor tell me this today. Unfortunately I think this is more the rule than an exception when your trying to find a doctor to treat your condition. Four months ago I moved from Florida where I had been diagnosed with POTS from the tilt table test. I was seeing a specialist there that has helped me make great progress with my condition. The last three weeks have been particularly hard as my health has taken a turn for the worse. It was time to start looking for a new doctor. I have loathed doing this because I knew the process would be painful. Luckily for me I have a close friend from high school who is a doctor out here. I asked him for help finding someone who deals with POTS. He is an orthopedic surgeon so he said he would have to do some research. Within a couple of days he had a name for me. I called the doctor?s office and made an appointment. To my surprise I only had to wait a couple days to see this new doctor. This was even better! I know from experience that most doctors don?t have a clue about POTS. Often they think you are making up your condition. I had hoped that since my previous doctor had written an 8 page study on my tilt table results that it would be easier to convince a new doctor that I indeed have POTS and I?m not making it up. Just to be sure I was taken seriously I went back to my military roots and got a clean haircut and shave. You would be surprised at the difference this makes. I arrived early and settled into my book. I recommend always having a book available for the long waits. I knew it was going to be bad seconds after he called my name to come back to his office. He did not greet me at the door, rather walked down the hallway and disappeared into his office as soon as he was sure I saw where he was going. I brought all of my records with me just in case and got back to his office. He neither introduced himself or shook my hand. My old military habits waited for him to ask me to sit down. I soon realized this was silly and he wasn?t going to extend any common courtesies so I settled in the chair across for him. He hardly looked up at me. He fired a barrage of questions at me that required a yes or no for an answer. He asked me what medications I was on. I responded with my long list. He hardly looked up and muttered, ?I don?t understand why your on those medications?. He asked me who I had seen, I told him a POTS specialist in Florida. He point blank told me, ?there is no such thing as a POTS specialist?. I was stunned. I thought about arguing with him but I already knew he wasn?t listening to me. He asked me about my headaches, about my dizziness. He never asked me about fatigue or any of the other symptoms I was having nor did he give me a chance to talk or give my history. I told him I have the tilt table test results with me and as I reached for them he told me it wasn?t necessary and asked me to go into the examining room. I got up and trotted after him. He told me to remove my shoes and stockings (stockings, what is this 14th century England?). Then he pulled the classic doctor move and told me he would be with me shortly. This is where they leave you in the examining room for about 10-15 minutes while they do god knows what. Maybe he was looking up POTS? I associate this tactic with customer service for large telecommunication companies where you call to complain about service and they leave you on hold hoping that you hang up or transfer your phone call to India. The plus side of this is it gave me a chance to think about what I?m going to do when the inevitable comes. I thought about maybe using colorful language, or maybe just walking out of the examining room and trying to salvage the rest of my day. In the end I chose to not give him any reasons to solidify his conclusion that I?m making this up. Eventually he returned and began the physical examination that I had been through numerous times and knew that I would pass. Of course this involved taking my blood pressure while laying down, sitting up and standing. I have passed this time and time again but failed the tilt table test. It also takes a little bit longer than 20 seconds for me to go tachycardia upon standing. Which is probably why the tilt table test takes 40 minutes. But hey what do I know I was seeing a made up specialist. After the test he said nothing more than, ?you can put on your stockings and shoes and come back to my office?. Again, whats up with the stockings? He left abruptly and I knew it was not going well. I went back to his office and he point blank told me I don?t have POTS. I was so excited that I was spontaneous cured (note the sarcasm)! The doctor then told me that my dizziness was probably caused by the migraines. I stated that I was under the impression that the only way you could definitively test for POTS was with the tilt table test. He brushed this off and told me that because I didn?t go into tachycardia that I don?t have POTS. Keep in mind he took my blood pressure and heart rate immediately upon me standing. I?ll wasn?t standing up for more than a minute before he had me put my shoes back on. He asked me if I needed refills on the prescriptions (the very same ones he didn?t know why I was on). I told him yes and he wrote them. At this point the doc asked to see some of my records. I quickly gave him the 8 pages on my tilt table test results and he read through them briefly. After he handed me the prescriptions he asked if he could keep the test results I flatly told him, no. Then he said to continue with my prescriptions and come back and see him in a year. At this point I was done and I walked out of the office.

I am hypo-thyroid (graves) and I tried Florinef. Nobody really said anything about having bad reactions to it at the time but thats not surprising as my doctor at the time was clue-less. I haven't been checked for a vitamin D deficiency but I would not be surprised if I was deficient with as much time I spend in the sun. In the beginning the florinef helped allot with dizziness and fatigue but after a couple weeks it gave me terrible headaches. To the point I had migraines daily for about a week. I think allot of people see great results from florinef but I didn't. And it made my face pretty bloated as well.