Sunshinegirl

Sublingual B12 always works for me.

I too relate to you experience but... Let me think out loud for a moment...because.. Its not to say that one causes the other. It just happen to be present in at least 50% of the population. Relation does not always mean causation. Some things, like your SNF issue can be progressive. Pots can wax and wane for some and be debilitating for others. If we think about the nervous system and what we know about dysautonomia, how it got its name, we are talking about the part that goes haywire... in this case is when the autonomic system runs amuck. This is not due to the small nerve fibers alone. What causes demyelination or neuropathy may only be related. To me, this condition has been like doing a 1,000 piece puzzle with all the pieces turned upside down. One of the most telling things for me about these conditions are when you read the medical history under peoples profile and then tabulate the similarities. (I still don't know how to create mine). Look at how many had Lyme. Look at how many have MTHFR, MCAD (mast cell), GI issues....the list goes on but they are all very similar. Lyme for example: We know that the most in the medical profession don't know how to properly treat this nor will health insurance companies pay for the full treatment....that is why people only get 8 weeks of antibiotics. Speak to many with Lyme and you will find that most don't ever really feel "right" again...or not for a very long time. Putting these pieces together with my own experience of how many neurologists first ask me when I had Lyme.... I did not have Lyme. This does not mean that I don't have dysautonomia. I have MTHFR, MCAD, POTS, TBI, SNF damage. These are just my observations and I think I just cracked all my eggs

I think writing a book would be a great idea! I don't know how many books out are out there if any but there are some blog sites. Unfortunately, many with this condition have a hard time keeping up with live let alone maintaining a site as an individual. So your idea of being collaborative is perfect! I have great research and writing skills. ( I don't use these skills here because I write in my own voice) I have a ton of experience writing and know all the rules about citation. I can analyze and synthesize information. I would not mind being the person to put all the information together in an editorial capacity. One of the easiest ways to do this is to have people write their story because there are different causes and nuisances. They will have to give written permission to have it published. A person can use a pseudonym or a real name. It does not matter. Then collect the stories and do minor editing if needed. This could be a portion of the book. The book would could be in sections like: What this disease is and break it down into subtypes, then a section about causal links such as small nerve damage, TBI, genetic correlations, other disease correlations (like lyme) etc.. , then treatments that are used. I think including a big section about the social emotional impact is SO VERY IMPORTANT!! If I were editing this book, I would likely put peoples stories in the sections based on relevance to support the information being presented. In this way, it can be both informative but not "dry". At the end of the book we can compile all the best resources out there. I think I would be more likely to read a book if it was actually written by people dealing with the condition. Then, the book can be published as an e book very easily with little monetary investment. Proceeds could go to an organization that is working on better treatments and quicker diagnosis. Maybe DINET could help facilitate this process and the proceeds could go here. Lets get started!

Because you have a physically limiting condition your job is obligated to provide you with reasonable accommodations. If you need to be sitting in a reclined chair and can still do your job, that is reasonable. It may mean using a lap top verses a regular computer. If you have to meet with people in an office setting, this is still possible. If they cannot reasonably accommodate you in your current position, they can offer you one in which you can do a good job. Having a note from your Dr. may be necessary. Once it is known that you have a disabling condition, they cannot outright discriminate but....that does not mean that wont do it subtly. You will have to make note of all of your actions, conversations, requests...etc... They cannot tell you that you cant go to a doctors appointment but it is always good to try to schedule them during non peak work hours. I found that I had to go in for hours that I was unpaid to get all my work done so that no one could say I lacked dedication or did not perform my duties. Some things I could take home to do. I always made sure that I did more than was expected of me. I never used company time on the internet or was on my personal phone. Companies have ways of tracking computer use. If you email something to someone in your company always bcc your private account, not work account if it is not "confidential" material owned by the company. This way you always have your own records. I always followed up a spoken conversation with a summary email. This was my way of logging all conversations regarding my condition and work performance. Even though I worked for "good" companies, this came in handy more than once! I hope you never have to use your paper trail but you will could end up sorry if you don't keep one. Im not saying this to scare you but so you can be informed because information is power. Also, I found it very important not to talk about my condition at work very much at all. You can say things one way and be perceived another. It all depends on the culture of your workplace. I did not want to be seen as someone bellyaching at work. If asked, I kept it short and sweet.

I don't have any real answer for this but I did get a sort of answer from my neurologist when he took nerve samples from my legs. I asked him what this would have to do with POTS. He said that the same small nerves that he was collecting were present in the rest of the body such as the heart. If there was evidence of nerve damage in one part of the body, it would likely point to small nerve damage in other areas of the body. If the nerves in the heart are not firing as good as they should, it would account for the elevated heart rate. This may be why many people with POTS show this pathology. For this reason, he said I had do to a list of things to protect my heart from working harder than necessary while also not becoming deconditioned. The main things were to wear compression stockings not just to increase blood pressure but to assist the legs (the second heart) in brining back up the blood, To sleep at a 45 degree angle upward and to do specific exercises that focus on leg strengthening that work in a pumping like motion such as treading water or the recumbent bike. I also have to have a ton of salt and water to combat low blood volume so my heart does not have to work as hard. When I put these things to use, I saw near immediate benefit from a few of them.

Yes and this explains why it has been so hard to get a dx for so many years! Its like trying to find a needle in a hay stack and some of these conditions don't have traditional pharmacological treatments. I got my testing done through insurance. The results did not give me a specific number as to which one it is. Ill have to get a more thorough report from the dr. This Heartfixer site sounds like what I may need. So far I have changed my whole life to this rigid routine with some benefits but have found that in the last 2 years or so, my heart rate has become worse and my main discomfort compared to the other symptoms. Thanks for the info.

This happens to me a lot. It started when I had a TBI, got a bit better over the years but I seem to have bad weeks or months of it. I also notice an uptake in obnoxious hiccups when it is worse than usual. I also choke on my own spit. I am careful not to drink while in a conversation or attempt to inhale right before sipping. Small sips with deliberate intention to swallow. For me, the TBI messed with my nerves that control some basic reflexes such as swallowing. The Chiari malformation does the same thing but has a different cause.

Kidneys constantly talk a back and forth with the brain via chemical signals and levels of hormones that change throughout the day. When you lay flat, the fluid that accumulated in your legs and other parts gets redistributed back to your kidneys. It is the kidneys job to keep a state of homeostasis including sending off a thirst signal when you are running low on fluid and to create urine when there is an excess of water. Under normal conditions, this works well but if you have pooling or any kind of edema, then you will experience more urine being made when laying flat vs a person who does not have this situation. Before I began laying with my whole torso elevated, I had excess urine at night and also excess thirst at night as well. This has all resolved. All blood test showed that my kidneys have no problems of their own....that were not set off by battling with POTS things. Excessive night sweating also stopped. sweat is a way to get rid of water and urea...so that makes sense. Abdominal pooling creates problems for me as I feel like all my organs are squished and my guts shut down too. This is a catch 22 because the nausea, poor motility and all that is not helpful. My kidneys do feel stressed during these times. I feel sucker punched in the back lower rib area. It resolves without incident to my kidneys but I do wonder if there is something I can do in this situation? Kidneys do a lot more than move water and make urine. The signals sent out also do things like instigate the creation of blood cells. This makes me wonder if those with low blood volume have a breakdown in the 2 functions? I wonder if there is a way to tell? Im thinking a blood test that counts red cells should be able to tell if there are enough being made. Kidney function is measured in a comprehensive blood panel that measures bun and creatinine. Creatinine and BUN (urea) are waste product produced by the kidneys. Too high or too low ratios might mean something is wrong. I can only speak to these things after hydrophrenosis (sp?) during pregnancy when one of my kidneys nearly popped. This is the end of my knowledge about kidneys.

I finally got my Dr. to do this test and it came back positive. I don't know which number it was positive for. I have read a lot so far about it and got a supplement suggested here. What else can I do? Im so skittish about changing anything because of POTS. I still don't know what else is involved with the POTS dx as I am still waiting on results of small nerve fiber tests. Right now the theory is that my small nerve fiber issue might be causing the high heart rate. This might be the connection between the 2? What has anyone else discovered about the connection and possible treatments? I have also been doing a Paleo diet because of suspected mast cell involvement. I have not been able to get the blood work done for it because it comes on swift and hard...so I cant drive. I had a bad swelling attack from beta blockers last week. Since then I have my HR recorded as high as 213 bpm. That is the highest I have seen it. I could not drink or eat much of anything so I think my salt levels dropped out and I had low blood volume. Working to restore it now but feel very bad. How do you manage POTS, mast cell and MTHFR?

I raised the head of my bed and it took a while to get used to. The reasoning I was given behind this is your heart does not have to work as hard if you have a high heart rate. Also, when you lay flat, your kidneys sense the change in begin to filter out more water. For us who have to keep the fluid going, this just undoes all we worked for during the day! So, the first night I raised my head and torso, I was not up all night peeing! I have kept a higher blood pressure and my laying heart rate is usually pretty good. Even though my BP is up my HR does not remain stable when I stand or walk. I can drink less during the day and subsequently, don't have to have as much salt. Im also not as tired during the day because I can sleep through the night without trips to the bathroom. Just raising your head wont achieve these intended results. Your whole upper body has to be inclined. I don't know what this does for head aches or migraines.

Thanks for the articles. One does explain many symptoms, especially terrible and unrelenting hiccups as well as aspirating a lot. Yes, you are correct, there is very little in the form of rehab if your main symptoms are mostly neurological and do not include obvious problems with walking or talking. Now that there are many veterans coming back with shock or closed head injuries, there is much more going on in the area of research. More attention is being paid to the devastating impact of things that cause "micro" tears vs an obvious gash. Im not sure if these are able to be captured on imaging yet but at least they are being recognized. For unconventional rehab, I have learned to identify the areas of deficit and use other areas of my brain to accomplish a task. Im my case, I have a hard time with visual spatial processing especially if there is movement. Using a colored film on a computer scree is useful. I don't have a problem with decoding or seeing things per se. I learned to focus on parts rather than the whole in many cases. I get lost a lot so I focus on land marks and the perception of passed time to find my way around. I don't rely heavily on my GPS or I would be lost all the time without it. When I could not read and had to learn again, I turned the book upside down and read backwards. This seemed to use a different part of my brain. This also required a different attention to detail. My eyes did not jump around the page so much and I could comprehend what I read. I also ended up writing backwards for many years and use my least dominant hand. This used the other side of my brain and now that I was writing backward all the time, none of my letters were wrong. Eventually, I moved to writing forward but still use a pencil, so I can erase backwards letters. Math on paper does not work for me but I learned to move the numbers around in my head. I habitually categorize things by similarity and learned to make interesting associations in order to get some kind of a memory back. I also limit the amount of environmental stimulation by different means. I could write a book about this! Maybe I should!

Talking requires deeper and more frequent breathing. I became the question asker and listener over the years.....its a real help in social situations! If or when people actually and really want to know about me....I make the time and breathe slowly. These encounters are only with people who understand my physical condition. I am sorry this is happening to you ...but, you can adapt, improvise and improve....though it may take much time. I learned from a retired minister to "always be tellen the truth, but not always be tellen it". That means, its ok to pass off your symptoms to those you don't see frequently, but you might want to inform those who really love you.

I am sorry that you had such a terrible injury...trust me ...I know... It really changes your life in so many ways that do not show up as an "injury". It is a long lasting unseen injury that society does not readily acknowledge... Did you have your human growth hormone (HGH) tested specifically? If so, what were the results if you don't mind me asking? .. My injuries were not in the same location but top of the head and back. Neuro testing shows no frontal damage left or right. There could have be damage but it was still when my brain was growing because I was young... so they attribute my "unusual" compensatory strategies or my language "way of being" to using different parts of my brain that were still growing at that time. If you want to discuss neurological "rehab" in not so conventional manners... I have some good techniques I used as a kid, then as a teacher, then as a person who led a brain injury support group and therapy. Its not common sense per se but involves nothing more than movement and looking at the world differently. That's it. It gave me 90% of my brain back...and in some ways, in better fashion. Cant explain it, but my testing does. I am not apologetic about my internet safety...nothing personal... Hope you understand and also feel the care I have for fellow TBI sufferers, I don't interact with people in real life online...for obvious reasons... never will. If you have interest in my endeavors, I know of a private forum for TBI where we can interact over this particular subject and maintain anonymity....this is a public forum...so I am guarded.

I ask because I have had a few good bumps to my head. 1 or 2 that qualify as a TBI. A new Dr. I saw wants to test my human growth hormone levels. We need them long after we are done growing I guess. He has reason to suspect that the TBI's could have messed with this hormone production that has something to do with the workings of the nervous system. I don't know much about it but Im on a research binge. Do you know anything about how this works?

I have a child with a chronic illness. When I find something that works, I don't ask really.... I highly suggest in a tone that means Im not backing down. For me, I say "this works, its what I need, lets try it, heres the science" If I get a "No" I ask as many smart questions (previously prepared) that are hard to make up answers for. I do this until I have exhausted the time allotment and befuddled the Dr. Then I get what I need. This may not be the best approach but I have found that Drs. have less time to think things through, no time to research and have a waiting room full of people. I provide the thought process, the research and then make time an issue. Yes, it is manipulative but when your quality of life depends on something as simple as an IV bag...its worth the intellectual tantrum.

I have to agree with the above posts. When you loose weight the wrong way, you are actually loosing muscle and water....not fat. Weight loss is so much more than the numbers! If you don't do it the correct way, meaning keeping and gaining muscle while loosing fat and staying hydrated, you will gain it back and maybe more! These pills could hurt you if you have a high heart rate or irregular beat. If you have a hard time with electrolyte balance...it will get worse. I gained a bit of weight and want to loose it. I was at a MD who is also a Dr. of Osteopathy yesterday for a holistic approach to things and he is close with my neurologist. When I mentioned that I wanted to loose some weight he said "why?" After the exam of my legs and arms where he was squishing me, he said that I had a very high muscle content and should just keep working out when I can and continue eating right. He suggested that if I do loose weight, not to take any pills and not go to excess on anything or I will end up with repercussions. The message was, slower is better. He also suggested that I get a new concept of body image and be at peace with myself no matter what. Wise! So, I still do want to loose 25lbs (im short) but now I feel better about doing my best on any given day and not giving in to the temptation to fret or add negative feelings to my situation. I do think this encounter changed the way I look at myself. I am not a number or a fashion statement. I am a person living with a situation that is akin or likened to living with congestive heart failure! I don't need to be my own worst enemy right now or put unrealistic expectations on myself...or loose muscle mass. One very good reason not to loose muscle mass on fad diets is because muscles are the furnace for burning energy (fat) and when you loose muscle mass you have nothing left to compensate for sloppy vein constriction that causes POTs in the first place. The POTS will get worse with deconditioning and then you will not be able to work out as well as you could today. Deconditioning is far worse than being a bit heavier than you would like. I have decided that in 5 yrs time, I will work up to being a "version" of a body builder....that means I will get as much muscle as I can....and maybe shave my legs if I can bend over.

Ok...good. Remember to stay still when doing your readings and keep your arm limp or you may get a faulty arrhythmia reading. This is especially true if your HR goes up super high. My suspicion about this is because the high heart rate is hard for these machines to read when the first start the reading process. When my HR is above 150 I usually get an arrhythmia reading when if fact, I don't have one. Watch the little heart pulse on the screen and you will see it blip rapidly at first. That is in my opinion, a fault of the machine because most people do not fall in this range. The machines are made for most people, not with us in mind. If it does this part way through the reading, it is most likely a real catch of an irregular heart beat. So put the machine at a level where you can see it and notice if there is a difference in the blips after the signal has caught on to your HR. Does that make sense?

Every time I take my BP it is slightly different. This is a dynamic system...so change some change is normal. When I change positions it is very different. My experience with pooling is 2 fold. When you have pooling, you might be experiencing low blood volume. This can mess with your bp. When I have swelling in my gut that may or may not be blood pooling....I think my gut goes on strike and refuses to process even water!....then I feel distress. This extra internal pressure on main arteries and pain do keep my bp up for a little bit but not drastically. Some automatic bp monitors are not very happy to register low numbers. I always have my taken manually at the drs office. My machine at home will give me a error message 1/2 the time when I stand and my bp is very low. If I get an error 2x in a row, I just have to know that it is low. These machines are calibrated to read norms better. Also, make sure you get the cuff on in the correct position and snug enough. Most will have a little red line that is to line up with the inside of your arm. I put mine on while laying down, then stand up. It is easier that way.

I feel anger FOR you! This is unacceptable treatment! I too went through all of this but not with a psychiatrist. Other specialists tried to dx me with CFS and Fibro. I know they are real conditions but I refused the dx because I thought it would cloud the bigger issue. Somehow I knew that these syndromes were part of a bigger whole that was not considered a syndrome in the eyes of the medical profession. This is the dx I sought and got many years later. Just yesterday I hugged a dr who told me that if I was crazy, then he was down right nuts. It was such a relief to have someone interact with me in that manner. I have always avoided psychiatrists for many reasons. Not all are bad or going to treat you like that. I did find one who is also a doctor of osteopathy. He does write prescriptions but offers just as many supplements and life style changes if the person is willing to take that route as well. In some countries and practices, your general dr. can prescribe many psychiatric medications. This can be more advantageous if you have bad reactions to many medications because you can get a sick appt. and not have to wait for a month or more.

About calcium carbonate...from what I have learned...this is not the most bioavailable form. See if you can get it in a citrate version. Perque offers great pharmaceutical grade versions of what you need. If you read about the way it is absorbed and used, you will find that you have to add vitamin D and magnesium to the mix for it to be at prime absorption because these all work as a team. (this is one reason they fortify American milk) It cant hurt to add potassium rich foods such as avocado or banana when taking supplements. This rounds out the main electrolyte needs for the most part. I do great with avocado because I can salt it. If your levels are normal or low...this might be a good idea. Since these supplements are usually water soluble, you will likely excrete what you cant use. BUT it is always good to know your numbers before starting a regimen. Also, just because blood levels are normal does not always mean your body can use what is floating around. (absorption issues) One main thing to consider is your parathyroid or thyroid conditions when using calcium supplements because too much calcium could cause kidney deposits and stones. So....know your levels. The reason for this has much to do with absorption and the rest of the process that goes on in the cell after the twitch that causes the muscle to contract. The ATP process (energy) and other processes cannot proceed as usual without these vital electrolytes. Things break down fast if all the "players" are not lined up to bat so to speak. High Five the Epsom Salt baths! They are awesome because this "salt" is partly magnesium that can be absorbed through the skin. This is the pain reliving mechanism that starts the "game" back up again and can assist in removing lactic acid hence the pain relief that occurs. Ps. if you usually find a vitamin in a pill form it is usually water soluble and more easily discarded if taken in excess. If it comes in a gel cap that has an oil base, it is fat soluble. You can hurt yourself with too much fat soluble supplements as they will store in your organs and fat. There are exceptions to this basic concept of course...so know what you are doing. In the case of recommended amounts...this varies from country to country and regulations. In the US, it can vary from where you live because we are so vast in size. The more north and light skinned, the more vitamin D you may need in the cold months. There are many indicators of needing to supplement. I find that these show up in my skin and mood first. My best advice has come from Doctors of Osteopathy vs MD's. I have also found a few good chiropractors who dive into holistic treatment that have had great advise. If you don't have either, then do you research on respectable sites. I only use google scholar for my information but other places like the Mayo clinic can also offer general guidance. Its all about them salts, them very salty salts, no achies...ooooo...(that's a song parody) Disclaimer: I am no more educated than yesterday !

Paul, Im sorry you are feeling so terrible. Unfortunately I could not get anyone to help me until I became "clinical" and by that I mean a HR over 100 just when sitting and skyrocketed higher upon standing. You can help yourself. Much of what I had been doing by the time things got bad were what I was told to do when someone finally believed me. What can be just as telling is your BP. What is that like in different positions? Before you start eating salt like your a horse on a lick, you might want to get other things checked out first to make sure that you are not going to make things worse for yourself....Like make sure your cardiovascular system is in great shape to start.

My son has GERD and that starts in your stomach. I don't know about being dizzy. Do you have a home monitor? Maybe take your bp and hr and see if anything seems funky? I get ringing in my ears and woozy when my numbers are off. Sometimes that's a clue that I am getting sick with a virus too. My numbers are the first thing to go wonky...usually lower.

Disclaimer: I am not a scientist...but I did do well in school. What I do know is that build up of lactic acid causes muscle pain. When you work out your muscles release lactic acid and it is that build up that makes you sore after working out. This also pertains to some of us when we are not working out because for one reason or another we don't clear the lactic acid. One reason I have read a bit about might be the process by which your muscles work. It all starts with a signal from your brain that starts the calcium explosion in your myofilaments (sp?) This leads to the filaments changing shape and getting shorter...making a contraction. When this process is done, they elongate and the calcium exits and muscles relax. So if you have an issue with moving calcium, this could be one of the reasons you are in such pain. Do you have enough potassium? How do you balance your electrolytes? What kind of calcium do you use? there is a difference in the citrate and carbonate versions in uptake or bioavailability. All I know about pyruvic levels is that when they are low your other cellular process are or could be dampened. It has something to do with mitochondria because they are the movers and shakers of the intercellular metabolism. I need to read over this again as it is usually only spoken about in relation to lactic acid. One cool mitochondria fact is that they have their own DNA. Imagine that, trillions of creatures that are not you, make up you. Add all that together with your gut microbiome and all the trillions of organisms keeping your skin healthy and one must wonder who is "me"? Blows my mind. Keep being amazed. Thanks for the values. I guess my must have been in reference to being less than 0.1

I forgot to say to take your bp and hr after laying for 10 min. then stand up and do it 3 times over 10 min. It is also best to do it when you have someone there to spot you. When I said to stand soft that means don't lock out your knees or squeeze. As soon as you lock out your knees, you engage muscles. just let them be with a bit of slack without engaging your thighs anymore than needed to stay upright. Another note is that some machines do a 3 in a row test. That's ok but then you have to wait longer for your arm to recover. Taking your measurements should be spread out a bit. So. I do a 3 in a row to get a good base line of laying and standing to make sure Im looking at ballpark accurate results then proceed with one reading per interval when doing my test. If you put the cuff on upside down you will get subpar results. Then take your info to your drs office and have them repeat it. I had virtually no difference in readings when doing it at home and in the drs office. Of course, things will vary slightly from day to day or if you had some coffee. For some people the time of day matters some too.

You know your body best. If you sense that you are being lied to or shoved off, you likely are. Some people do get better in time and others don't so "youll grow out of this" is not a complete answer. It also does not help you in the mean time. I always get my full reports. When in doubt, get a blood pressure machine that also takes a heart rate and do your own poor mans tilt test. Do it every day and record laying, and standing. Remain laying for 10 min and already be set up with cuff on and ready to record. When standing take your vitals on a regular interval up to and past 10 min. just for good measure. I do this in my bed room where if I fall, I am facing my bed and have a support behind me. Also don't actively squeeze your muscles like you usually do in an attempt to regulate. Just stand softly and try not to over compensate in any manner that you would not be doing if you were laying down. ex. I have a hard time not excessively breathing when I first stand as a compensatory measure to get oxygen to my brain. When you get a few weeks worth of data, then bring it in. When you do these kinds of things, people don't actively pass you over or tell you half truths. You are your best advocate and you have to act like one rather than a patient. It will pay off way sooner than later. I wish I knew this when I was younger.