Sunshinegirl

Ok. I got the gist. My first 3 fingers would not move for nearly a year. I strectch PEC minors and it made a HUGE difference. Heart rate is way up despite stabilizing BP for most of the day. Also degenerative disc disease in my whole C spine. Not far from your age...weirdly similar with the injury component. Can we compare info? Ill check back soon.

Can you elaborate? reading your sub list sounds like my life.

You can order compression stockings online and some sites will deliver for free or rush your order if you pay for shipping. I got the brand Medi because they are the only ones that come in petite as well as regular. My neuro said that I needed 40/50 but they all contain latex to which I am allergic so I got the 30/40 and they work well enough. He said that anything less than that is not really going to do me any good. I was also told to eat 3 teaspoons or more of salt a day and to drink 4 or more liters of water. I was told to never lay flat again for the rest of my life but to prop my bed up with bricks at the head. The reasoning for this is when you lay flat your kidneys promptly decide that you don't need that much fluid and start to filter it out of your blood. that is why many of us are up peeing all night and bumping into the walls. I stay at a 45 degree angle and that stopped that mess right away! propping my feet helps too as well as cold water. If my lips feel chapped, I break out the electrolyte drink. I get potassium, magnesium and calcium from food and vitamins. It is a very delicate balance. I do not take hot showers or put my arms above my head. I wear special shoes that force my legs to constrict as if walking in sand (MBT). This helps the return to my heart and reduces pooling. I limit diuretic causing things like coffee or alcohol. was also "sentenced" by my neuro to 5 hours a week of treading water or kickboarding in a pool or riding a recumbent bike plus strength training for my legs and abs. It has worked wonders in just a few months. My BP is not going below 90/58 most days and is pretty stable. Even in the US it took me a while to get into this neuro who is one of 4 highly sought after drs. He has a real name for himself. One reason he is so good is that he only schedules 3 or 4 patients a day and spends 1-2 hours with each. After 15 yrs of searching, I finally found what I was looking for. I really feel like a wildly different person in many ways. Still have GI issues but a mostly veg diet with some protein has changed that in the last 3 weeks. I have had huge positive results in my BP in just days of implementing each of these steps but my heart rate is still weirdly high. I was prescribed a beta blocker that I have yet to try. Im waiting on nerve test results. My heart rate may be due to nerve issues. When I lay down my hr is 61. when I stand up it is 140. I get very hot and bothered and weird feeling. It eventually stabilizes out in the 120's when sitting. Hope this helps. Much of this regimen would not be harmful to an otherwise healthy person. The one thing that may or may not be good for you is the salt intake based on your own health issues that I am not aware of or qualified to speak to.

I agree with Katybug. I also get pain to the touch with migraines. I had the hardest time defining and articulating the different kinds of pain or lack there of and still do sometimes. For me, I had a TBI that causes migraines and sensitive skin also sensitive to pressure. I also have degenerative disc disorder in my whole neck. That pain radiates down my large nerves. I have hypercusis (sp?) that causes my head to feel like it is going to blow. I have bolts of fire that seem to shoot down my big nerves. I have pressure point pain like that of Fibro. I have dulling of pain in extremities. GI motility issues cause pressure and sharp pain. To start I drew pictures of a cartoon body and began drawing out my symptoms and then gathering as much data around them as possible. This is how I was able to articulate the origin and cause of the pain while in the middle of it. Later on, I was able to interpret the cartoons and bits of data and make sense when I spoke. I found that in the middle of the pain I could not be bothered to try to talk. I made a list of adjectives that definitely applied to me under specific conditions because the forms you fill out or the simple yes or no answers drs want do not do me any justice. I wasted years on those condition specific forms that really only applied to one kind of experience but not all of my experiences. I also hate answering questions that ask me to rate things from 1-10.

To my knowledge nerve pain and neuropathy are not the same. I have neuropathy and that means that I have less feeling in my small nerve fibers because they do not work well. I do have shooting pain in large nerves and twitching in small nerves. so for instance, I can stick my hand in boiling water to get an egg out and not feel burnt. I have to be careful to make sure that I do not keep my hand in for more than a split second or I will get a burn. I have walked on hot pavement and not noticed how hot it was and got blisters. So neuropathy and nerve pain are sort of opposite but you might have both depending on what type of fibers are impacted. Maybe put out a post that asks about nerve pain and POTS without neuropathy. I wonder if it may not be genetically based per se...like "oh yeah, we know all about that gene malfunction", because these come with a bit more specifics....Not to say that it is not genetic....???? but maybe autoimmune or residual from another disease or illness that messed up your autonomic nervous system. Did you ever have a TBI? I cant get a short cut to copy and paste here. I will try later. It is a very interesting study that might give you more questions to ask and maybe a new concept of what you are dealing with.

I was recently tested for small nerve damage. I don't have the results yet but the initial test was highly indicative of damage and the dr said it might easily explain my very high heart rate even when POTS symptoms are not immediately present. I read that about 50% of those with dysautonomia have some kind of nerve damage that is evident through testing. The type of POTS/dysautonomia that this occurs in is usually more related to a genetic component or a co-occurring syndrome that has POTS as part of the whole picture. In MTHFR neuropathy is a very common thing and it also impacts the cardiovascular system, hence the high heart rate. So to answer your question, nerve damage is one symptom of a few causes but does not have to be present. * this is not medical advice* It is just what I have learned through my experience and recent research. Are you missing something? Well, yes and no. Now you might be able to exclude the causes that have neuropathy as the cause and start looking for causes that do not have this as a primary symptom. That would be the route I would take. One trend I have seen on this forum and in my interactions with others is a striking amount of people who has Lyme or a significant viral infection in the past. I personally have not yet met a person who has Lyme who did not end up with a myriad of puzzling symptoms years later. This is just an observation.

I smell burning rubber/ plastic and bleach for no reason. I run around the house looking for a fire. I never find one! Its usually when I am loopy for no reason as well. Iv never been dxed with seizures but I get what I call the "pop fizzies"...then I have to sleep for at least 4 hours. I know it is a deep seizure in an area of my brain that does not inhibit movement or consciousness. The way I got around this is to get on a pain medication that is used for nerve pain and also seizures. It helps even when the Drs. and tests are of no help.

I too have those weird nights. I also don't breath. Thankfully, when I am asleep my dreams turn to that of drowning or something very quickly and I wake up at the last second I wake up and inhale. It takes a while to reorient. I also end up weak and have to rest for at least a day. I don't get typical migraines very often but my eyes do bob about in my head and I can read even with glasses on. I usually see spots and become very sensitive to noise and light. About the not breathing...I found that I can sort of control my dreams if I tell myself what to dream about and what to do if something goes wonky with my body. This is helpful for when my heart rate goes very high in my sleep and I become boiling hot or if I don't breath on my own. In my imagination, I plan an escape route that wakes me up. I guess it is like meditating in a way but is meant to pop me out of a bad situation should it occur. I don't have sleep apnea in its true sense...I just stop breathing. I have though about getting one of those baby monitors that are pads you stick on your bed for if you stop breathing. At least the alarm would wake my husband. We have 2 twin beds right next to each other. It would not work if you share a bed.

Thanks for your response....its ok..I feel the same way when I don't have much to add but feel for the person and want to know where they are coming from! In the journey to understand myself, I have come to understand many other people with very different issues along the way. I feel blessed to know their story and even more blessed when I can pass on the knowledge I have gained as ideas to ponder and ask about. To my knowledge, a metabolic or genetic issue....I have several other markers for it. my pyruvate is low and lactic acid is not super high but on the high end of high....but I do all I can to keep my lactic acid build up at bay. I just don't know what pyruvate is specifically and how to put it in control. I work every day to keep an alkaline environment in my system and everything as balanced as possible. Anyone know what Im talking about?

How low is low is really low? I am not asking for "clinical" interpretation but just your experience with this test and its relation to lactic acid. Have you had this? What did it mean for you? Thanks

Honestly, I tried many different products but because I am short and have a small torso, nothing was working. I finally found Medi compression stockings that come in petite online. I jumped in and bought them because, really, I had already wasted $100 on other products that roll down due to my short torso. I only have one pair so I wash the feet every night and the whole thing every few days and hang it to dry. I don't understand the reasoning of wearing spanks. They provide very minimal compression. My neurologist told me that these things were useless because they do not have the level of compression needed to even being to effectively treat my symptoms. Iv tried everything and they all roll except for the stockings that are the correct fit for me. I found that JOBST runs tall and big. If you don't get the correct fit, you will be miserable and out of money!

These are all really great ideas. You have to find what meditation is to you. There are so many ways to do it. In the warmer months, I go to the arboretum and walk path with my eyes closed. I put my arms out to the side so if I feel a leaf I know I need to adjust my heading. I take in all the smells of the plants and feel the warm sun peaking through the tall trees. I like to shut out some sensory input so my other senses take over and I have to trust them. I am always amazed at how calming it is. I am lucky to have safe paths that are easy to stay on if I close my eyes. Other times I just walk in the grass barefoot and feel the cool, plush softness and focus on that. So what I am saying is meditation is anything that makes you feel centered. You don't have to follow any kind of recipe. See how creative you can get.

very happy your search is finally over. Did they tell you what the EMG test is comprised of? I have had 2, each from different doctors. One was ok and the other was not and I had to sleep for 22 hours after. Be prepared to relax and not have big plans afterward just in case you are too tired. If you use Google Scholar, you might find better but more complicated to read results for your search inquiry. I never use a regular search engine if I really want to know something past how to boil an egg.

I went to Graduate school online. It was the best choice for me because I could work at my own pace, in the middle of the night and reclined at any point. I had due dates and such but got disability accommodations that I did not have to use much. A degree in psychology isn't worth much because you will eventually have to get up and go whether you like it or not. Computer science might provide a more "workable" career environment. The last thing he needs is student debt that he is not well enough to work off. Hope that helps.

My son has IBD and had to be re-vaccinated for hep B. He also has high antibodies for things. The Dr. said this was common in people who have systemic issues. Much of IBD is a mirror of mast cell involvement. So, the link is the hotwired immune system.

I have had a variety of responses to Drs. trying to treat me for anxiety/depression. I don't do well with Psy meds that hit certain receptors that kick off a norepinephrine response easily. SSRI's are complicated. Some hit more serotonin, some norepinephrine....These are bad for me. I can handle those that work with GABA (the "parent" chemicals") but nothing else. I cannot even take epinephrine in the numbing stuff at the dentist! My heart races off the charts! Like you, I took a trial on 2 medications in this category and gained weight...I also did not sleep. It was bad. more than a few years ago I tried Wellbutrine (sp?) and did really well for 6 months....got off it and tried it again later and was a total mess! I really wished it would work again! I have found that the newer medications do more harm than good FOR ME. Have you read the book "The Prozac Nation"... the history of pharmacology for psychological issues is really humble in its beginnings. It was basically treating people with antihistamines and valium ( a plant derivative). If that did not work they tried damaging things like bad drugs and lobotomies....So with that history, and my poor response to things, I take antihistamines and valerian root. It seems to work for me much better than bouncing off the walls and gaining 20 lbs. This is just me. I would not say that all days are good days. (so don't take this as advise) I tend to move towards a holistic approach first, then to a medical approach. All I know is that I cannot function on psy meds at all. I get terrible hives, rashes, gut problems......so this goes back to what is the cause of your issue? Do you have mast cell involvement? Do you have other nerve issues? Do you have a brain injury or spinal injury? This is what I have learned so far...I don't know that it is super scientific. People with immune issues might have more problems with this because of mast cell involvement. People with genetic disorders will not process enzymes essential for cellular function....starting with the energy source..... The gut is the "second brain"....What impacts my gut immediately, will impact my brain function in just a few days or hours. What I have learned from trial and error, lots falling over and whacking my head, swelling (non pitting), covered in hives and red patches, terrible fatigue, heart racing, loosing what I ate day after day out the other end, becoming thin as a rail, not seeing straight, brain fog and a host of neurological and other digestive issues.......is that you have to find out your cause before you medicate. I have lost jobs due to "trying" medication. What kind of risk are you taking in experimentation? Where I is the communication break down for you? Injury, Immune, genetic..? A combo? What tests do you have (or outright obvious symptoms that make you fall over or break out in unrelenting hives...or other things your neighbors don't have but your close family members do to some degree) lend to your understanding of your condition? Im not trying to dissuade you from medication at all. My purpose here is to learn and to think smartly. I have been searching for years (15) and am still waiting on test results! If drs were not so myopic this would not be the norm!

Good conversation going on! What is the difference between POTS and related disorders and real "psychological" anxiety? What is the difference between mindfulness and breath? What is the difference between all of this and yoga practices? Ill start the conversation with a note about the difference between Eastern philosophy/ medicine (mind, body, spirit) and Western where your mind and body are separate and who knows if you have a spirit. (basically decapitated philosophically speaking)? So where in your condition does your "body" mess with your "mind" and make you and others think you are "anxious"? or are you just anxious about something? How does your breath control your heart rate? Is it about blood pressure only or heart rate control or nerve dysfunction? What kind of POTS or dysautonomia do you have? If you have Hyperpots it seems like its a game changer. If you have nerve issues, it is also a game changer. If you have mast cell issues....well...that is just as complicated because now you cant eat! You are basically allergic to living. I may NOT be correct...but this is how I am interpreting the experiences of others and my own on my journey to better understand myself as a WHOLE person and others with compassion. It is very possible that this condition can cause real anxiety in ones life!!!!!! It is HARD to live, function, work, keep going....It is HARD! and if you care about that and are human...you will be subject to anxiety...but that does NOT mean that every heart rate problem or feeling of doom or jitters is anxiety. I wake up in the middle of a fun dream that turns to dread when I wake with a heart rate of 155 -200 for no reason. I have to get up and bring up my blood pressure and decrease my heart rate.... How do you do it?

I cant believe that he said you were looking at your veins too much!!! So, today I was speed-ish walking and then got in the shower and one of my veins popped in my wrist. It didn't happen by looking at it too hard! I didn't hit it or do anything...it just popped and made a huge linear bruise. Yes, this happens to me. Epsom Salt baths work good but I don't like to be that hot.

What an amazing young woman! I cried. I too don't have any real answers. I relate to her rubberiness, neck injury, GI issues etc.. There was a time about 9 years back when I was soooo skinny, totally covered in hives and rashes, weird swelling. It lasted for maybe 4 years. Some days I could not eat due to severe nausea. My hair fell out in chunks and my skin was dry and brittle. I made a ton of changes just experimenting. About 2years ago the hives began to lessen and I was not so nauseous. I take antihistamines but if I forget a dose, I will be an itchy mess right away. I still have GI issues....it just dumps out of me. I rely on liquid vitimans and hypoallergenic plant based protein drinks during the bad spells. After I put some weight on, the POTS got a it better. I wasn't falling over all the time. I don't know exactly what changed but I eat organic, no red meat, no artificial coloring or sweeteners, very little wheat. Also, I use organic soap for everything and no fabric softners. Basically, I took out all xenoesterogens (I don't know how to spell that). I limit my exposure to the sun or getting too hot. I don't know what caused the change...I just know that this is what I did and maybe it had a positive effect. I guess what Im saying is that I was never quite as bad off but I was not a healthy sight at all. I could barely take care of myself or my kids. I also have a thought that it might have something to do with turning 35 and having a hormone shift. I really don't know. my son has Crohns disease and remains in remission with a gj tube and elemental hypoallergenic nutrition. Because it is elemental, it takes away having to break down proteins and the irritating by products of that process. bypassing the stomach takes away much of the reflux and nausea. He is a strong and healthy boy now.

The Feb/ March issue of Time magazine has a whole article about the restorative power of meditation. "Consider one study, for instance, showing that even a single day of mindfulness meditation practice can down-regulate a gene that codes for inflammation..." That's just a quote that sums up the article. Actually, the whole magazine is very informative and applicable to this condition since we have to focus on every aspect of our health. I was a yoga instructor for many years and although I don't teach anymore, I often do meditative breathing throughout the day. I woke up several times last night all unregulated and used mindful breathing to calm my heart rate down and relieve pain. I cant get through a day without it. I can do it on the move now that I have practiced enough but most people will need to start with a quiet comfortable place free of distractions. Once you learn to control your breath and block out the environment, you will be able to move about. I do most of my intentional breath work while driving. I have found that diaphragm breath works the best where as chest breath makes me more anxious. For diaphragm breath you will want to inhale and extend your belly out, then fill upward until your lungs are near capacity. This is done slowly. Don't hold your breath. on the exhale let the air out of your lungs and collapse your diaphragm. It takes practice. Eventually, you will be able to get on an equal 8 to 12 second rhythm. An easy way to imagine it is like a wave. As you inhale, the wave is moving up your body and as you exhale it is flowing over your head and down your back. A wave never waits on the shore so as soon as the wave of air fills your lungs, let it run out...taking all the stress with it. If you want to add mindful thinking to this one of the easiest things to do is say in your head "I am" and you slowly breath in and on the exhale add a positive attribute such as "healthy" or "calm".

I went with the Polar FT7 with the chest band. It is very accurate. I also compared it against a devise that is approved by the AHA and it was right on. The first day I found the chest strap to be mildly uncomfortable but once adjusted, I don't feel it. After reading reviews, I learned that the wrist monitor is not very accurate it you get a little sweaty. I went for accuracy. I use it for when I work out but I also use it to monitor myself. To just monitor, I start a session and then put in on hold. Then I can see my heart rate all the time and correlate other symptoms with my heart rate. If I want to record the event, I just press continue. It can hold something like 90 sessions. It can all be loaded and tracked using a computer program and you don't have to have a smart phone. I don't know about the GPS. Why would it have a GPS if it could not help you with where you are? I hope you win!

What? I think that's weird. Mast cell needs to be treated for what it is. Why would he not want to establish the etiology of the POTS??? You cannot treat rogue immune cells with salt water and compression hose! I have read that others totally rely on H1 and H2 blockers. This is a disease that causes POTS...so treat it at the source. My humble and uneducated opinion is to get a new allergist asap. My allergist is all over it. I don't think this Doctor is very wise. Do no harm....it is harmful to not treat the main component of a disease. Its like saying...yeah, you may have a broken bone causing excruciating pain but you don't need it set in a cast...you just need to take tons of pain pills and let your arm dangle off your body. That's just the way I see it. I could be wrong...but I don't think so this time.

Oh wow....yes. I don't consider breathing very autonomic anymore. I go through bouts of it. When I started doing breathing meditation, it got much better. For me, I found that it was not just a physical thing but a consciousness thing. It seemed like my mind was to preoccupied or something. I don't have sleep apnea but sometimes I wake up gasping for air. In my dreams I am drowning. The lack of breathing does not start with the dream but becomes part of my dream as I feel the sensation of what it is like to be drowning. I don't have a fear of drowning. I do a breathing meditation before going to sleep and this seems to remind my body to breath while I sleep. I do it 4-5 times a day and that seemed to stop it for the most part. If you go on youtube and get the halleluiah chorus...you inhale to the halle and exhale to the luiah. You need to find one that goes for about 10 min. There is a CD called the Mandala healing kit that comes with a great version of this. I found it at Barns and Noble years ago and used it when I taught yoga. This version starts out regular and then gets longer and deeper as it goes for 11 min. It is beautiful and a perfect breathing guide. Hope this helps

I don't have a ton of information. When I was young I had a head injury. It caused constant headaches and terrible hiccups. The hiccups were like nothing you have ever heard or experienced. They were painful and unrelenting. I had pressure behind one of my eyes but no tumor. I have struggled with visual issues ever since but have found ways to cope. It has taken me 20 yrs. I become very dizzy an nauseous with any visual stimulation. I learned to close my eyes when watching TV especially during commercials. I cannot "see" a movie. I cant focus on much but I have learned to many things just by touch and memory. I also use colored films for computer use to decrease the visual stimulation. Upon testing, I found that I have major visual spatial issues and was told to keep a very clutter free life and stay away from unnatural light. I wear visors and glasses at the drs. office and grocery store. I don't look around the store. I know where the things I need are and just get them and then look down. I also have a tender left side of my skull on the bottom. Its like my head is not screwed on straight. Its like it wants to tip off my neck. Also, I cannot ride with anyone in a car, I have to be the driver. I can break carefully and not send my head flying forward. I can also just focus on the car in front of me and not the dots and lines. Driving at night in a construction zone is absolutely impossible. I wish I had an answer for you. I was told my the dr who evaluated me that I had very exceptional compensatory skills that she had never seen. I guess my advise is to do what I do....think and live out of the box. There is 100 ways to do the same thing. You have to find what works. Im more than happy to share in detail how I got to this point.

Dizzyallie, After reading your med history, I have a few questions. Did the brain stem dysfunction cause the POTS? What occurred other than IBS that your large bowel was removed? I ask because I have major digestive issues and my son has crohns. I also had a very bad TBI when I was a child. What do you mean by a low GI diet. Are you saying low residue? Not trying to get off topic.... Went for neuro testing yesterday. The cattle prod was excruciating. This time, when they put the needles in me, they stabbed them in far. The sheet was all bloody. Im still hurting. The tilt table test, sweat and blowing on things was not too bad. I had not laid flat for months so I almost immediately had to urinate but was all hooked up. I slept for 22 hours, nearly straight, after getting home. I wont know the results for about a month. I told the neuro about my high levels as he had not had time to review them yet. I had forgotten the acronym for the genetic issue so I said " it looks like mother but without vowels and an F in it"....he knew exactly what I was talking about. I think that is a good sign! Who would guess from my description! But I had just been stabbed a few too many times. Ha Ha...