Sunshinegirl

I would say! I used to get the same way and then melt down and go into an unrelenting fatigue. Now I am older and I have learned to not get excited about anything...almost to the point of being a very boring person. Also, years of living with this sometimes ***** the joy out of many things. On the flip side, I have learned to not let things anger me so I am easy to be around. Hyper-arousal can come in many forms. I cant even watch a semi stressful TV show, go to the movies, etc.... I find that I get super hot and then end up with hives. Laughing can leave me crying and have to sleep for hours. Another thing is that if you don't get out much, the act of just going somewhere can cause anxiety about possibly getting too anxious or hot or whatever sets one off. I had a time when going to the park for a walk was too much excitement. Yoga, breathing, neurofeedback...can all help. Planning is also key. This way you can reduce surprises. I never go out in traffic or to a big store.

I have used organic ones in the past but I just let it in my mouth because you can absorb through mucus membranes. I cant stand the smell or taste. It is a last ditch effort and helps with brain fog and for some weird reason, GI issues. Sometimes my whole body just shuts down and I cant even get water to leave my stomach. If I have one, its outside and not around my kids. I wear a drape and a glove so I don't wreak of smoke smell. I scrub my face and teeth right away. I don't know if it is worth the temporary benefit. I have on occasion used the gum. If you get the 4 mg ones, they cost the same as the 2mg ones. Then you just nibble 1/4. I found that it causes a throat closing sensation or a gag that passes. My sister tried it and she had the same result. Im allergic to just about everything...so I don't think it is the nicotine but another ingredient. I keep a pack of gum around for the bad days or weeks. I don't find nicotine to be so addictive but then again, the only thing I feel addicted to is water. (I don't even care about food....maybe why I keep crashing my blood sugar.) That's all I think about and have a panic attack if I leave my bottles at home. I cant drink just any water so I got a good filter for my home.

Yeah, Id go in right away. Anytime you have this kind of bleeding whether or not you had an ablation, its worth checking out. Sometimes endometrial cells can survive an ablation and grow again. Cysts are common "leakers" of blood. That seems to make more sense to me. US are good but they don't always give the best picture.

One of the drs. mentioned in the video is my neurologist! This is so relevant. I don't respond very well to sleep medications but have great success with valerian root. Taking Gabapentin works wonders for the nerve issues. My legs don't move around and keep me awake. they used to just jerk but not like restless leg syndrome...just jerkiness or uncontrolled twitching. Since taking the medication, I don't have that anymore. It also would happened during the day too.

I have had this in the past. I thought I was having a seizure. It only ever happened while resting but not awake. It was scary. I felt like I lost control of my body but was aware of it. I don't know too much about it but I did do some research on "deep" seizures that are not caught on an EKG. Later, I thought it was likely due to electrolyte imbalance or lack of blood flow. For years I had the "pop fizzies" in my head...not real seizures per se but like someone shook a coke can and let it off in my head. I have not had that for a little while now. But I can tell you that these happened when I took SSRI's, abilify and NSAIDS. I don't know if it was a mild serotonin storm ???? I really don't know...

I don't know if this is an answer for you but I will give you what I have. I used to be a long distance runner and into weights. I had kids and then became a yoga instructor. I had always been regular. Somewhere along the line when my POTS symptoms had become terrible, I began to bleed more often until it became all day every day. They I became rail thin and stuck in bed. I was "young" so to speak so it was hard to convince anyone that I had a real problem. Medications made me swell and get hives. My only option was to ablate my uterus and look of endometriosis. When they went in they found endometriosis lining bits and parts of my abdomen. I was happy to have my uterus ablated! I was done having kids so this was a no brainer for me. It took care of things before I needed to have any hormone creating structures removed etc... this just got rid of the bleeding an anemia but not the POTS per se...though I did feel better having my blood stay in my body. If you strain and bleed...then this might be worth perusing as indicated in my personal experience.

I use the Polar FT7 sports watch. I like it because I can see my heart rate all the time if I want and use it as biofeedback. I also get winded and tuckered out just from getting dressed. I cannot for the life of me get the compression stockings on without having to lay in bed for half the day! My HR goes too high...that's the problem. Try explaining that to a neurologist! Rockenmamaof5 have you had a cardio workup? pink1975 I also get my stamina back from a sedative. I have come to believe that it lowers my heart rate and makes me feel better but does not make me tired per se.

I found out a lot from wearing a sports HR watch as to why I am so tired all the time. My HR is always so high...I knew that but when I put in my age, weight etc... and then just let it run, it says that according to my heart rate, I am burning 6000 calories per day. I know that is not true because I don't eat that much and I have not lost weight. Even though I am doing nothing my body thinks its jogging all day long and going for quite a few sprints. The adrenaline pumped out is also exhausting. Whats very weird is that most of the time when I am exercising, my heart rate is in a normal target range for the task I am doing but when Im doing nothing, it gets much higher. I wonder what that is about?

My GI tract stops as well and makes it very difficult to get in enough water and salt. Of all the symptoms, doom is the one I really hate and don't understand. When I get like this (many times a week) I recline at a 45 degree angle and put my feet up. I do everything to stay cool and watch funny things to get my mind off of it. Ice water with salt in it is my go to. I just sip it. If your husband can massage your legs starting from the bottom and moving towards your heart, that might help. Life just has to stop until you feel better. Shoulds and should nots have to go out of your mind or you will "should" yourself into not getting better. If that makes sense.

Interesting that you mention that swimming does not do this to you. My neurologist said that he wanted me to tread water or swim only. I did not know why until I got tired of the pool and started other forms of cardio. Well, I didn't just get tired of the pool. I got too hot in the therapy pool and the lanes in the regular pool are always backed up with people waiting plus I cant breath chlorine gas that long. So, when I was doing the pool and overheating, I was pretty good to go but when I switched, I noticed the difference right away. I am a total waste after exercising. I try to keep in low or moderate in intensity but if I get carried away, Im done for. I think I feel an adrenaline overload that leaves me brainless after a while. I cannot be consistent on a week to week basis especially now that it is getting hot and every chore is more taxing. I struggle to match my words with affect as well. Any other ideas as to why this may be? What is so different about swimming?

I don't have iv fluids and salt tends to just run through me. I have had a few rough patches recently. I decided to drink Pedialyte non stop for a few days and my HR did go down dramatically. I was having spells in the 230's and now the rate has gone down to the 160's at the highest and for one day I felt "normal". It is not cheap to buy the stuff in mass but IV treatments are likely more expensive. If this does not work, I may move to IV treatments if I can get a dr to sign off.

I don't take B's per se but my recent blood tests show that they were abnormally high!!! Weird right? So then the dr ordered the MTHFR test and I came back positive for 2 mutations recently. From what I know so far, these mutations cause your body to not break down the B family very well and so your cells cant use them...so you feel tired all the time. The blood tests can show high levels (or not) but the body is not using them very well. I happen to eat a very good diet so that is likely where I am getting the overload from. I started taking a form specially created for people with the genetic mutation and I feel fine. The B's are already broken down in such a way that the genes don't have to get involved to make it happen. My dr ordered more extensive B levels of all kinds recently but I have not gone in yet. I also get hyper off of other things that seem benign to other people. I cannot take any artificial sweetener either or my head will be a mess. Hope you can get some good tests done. It has been my interactions here that have made a whole difference in how I approach myself and the medical system and so far I have been met with more than positive results! Keep asking questions and learning from others experiences...follow up with your own research and continue to be smart about yourself!

I cant say that I know exactly what you are talking about but somewhat. Years ago before all junk broke loose, I would wake due to not breathing. I had dreams that I was drowning and my brain woke me up. Then I would have to consciously breathe until things let up. I would be awake and doing things and then the world would phase out and I realized I was not breathing. I would gasp and do nothing but try to breathe. during this time I had a very low thumping heart rate that was scary. I did not feel like I was breathing through a straw. I turned my attention to yoga breathing techniques and that seemed to help quite a bit. Years later, my heart rate goes to above 200 and rarely below 100 upon sitting and doing nothing. Iv always wondered about those years when my body/ brain began messing up....and what it has led to now. No persons story is the same by any means but there is a common thread. One thing that did stay the same for me is very low blood pressure. Reading your other post...going to the emergency room is more like a band aid than a real answer. When I feel like I am in real danger, I go...but otherwise, I avoid them. If I go in with low BP and high HR it is an easy IV bag...but it costs waaay too much unless I am desperate. You mentioned hr issues but not too much else???? more clues might help engage others.

Get used to "weird" Your body puts out different chemicals at different times of the day. these can impact how you feel on a day by day basis but if things get worse, these don't really seem to make a huge difference. Hope you stay well

Ok Ladies and Gents... I will tell you about my invention if you promise to not patent it and try to profit off of it. I do not intend to profit off of it but donate the concept to our community. It requires no sewing or being wet and is based on cooling large arteries. If you want my idea then write me a private note.

Initially for me I had similar variances as you do right now. Years later the variance can be a difference of 80 bpm depending on the day. The day I went in for my tilt test, I had been off all medications for a week and did not salt or water load. I pretended that this was not an issue for a few days. After the tests were done I slept for 22 hours straight. My poor mans tilt test shows a jump of 68 bmp when on medication and salty water loaded. For some people like me, I have seen progression of the condition over the years. This year my HR decided to jump to the 230's on occasion. Last year in was only in the 180's. 5 years ago it was only as high as 155. So...with this in mind I had other kinds of tests done. I found that I have MTHFR mutations, mast cell, Small nerve damage, likely ED's...on top of that a whole family history of things that are similar to what I am experiencing. What I am saying is.. .keep pursing all the associate conditions and tests because I feel like for me ...I may have more permanent issues because I did not know better 5 years ago or 15 years ago. I kept written records from nearly 10 years ago about HR differences. They were not significant enough for anyone to listen to me...but they show the pattern of the condition and lend me credibility now. Now a top Dr. has asked my permission to use aspects of my situation for medical teaching purposes. For me, I would get a good machine and do it every day. Mark if it is a good day or not. Try avoiding salt or processed food for a day and then see what happens? But don't put yourself in danger doing so.

I became so flustered that I made my own discrete cooling devise that can be worn under clothing in an classy way ...no bulk or fear of freezer burn on the skin. It is still in prototype phase but once I make the final revisions I can give you instructions on how to make one yourself using dollar tree products.

Pooter, So.. I get the toxic body and nausea. Totally! For me, it was when I stopped taking medications that I began to get better. This might not be the case for you. In my case, they were not being absorbed so they did not work. I was such a wreck that I had to have surgery to repair structures that had been damaged by not being able to go to the bathroom. I found that I had terrible issues with just about every over the counter medication and most prescriptions. I turned to ancient Indian solutions and found reprieve for a while. Senna is very helpful with motility and can be taken in a tea. then my small intestines went on strike for nearly 8 years. Then I was pouring out with undigested food. My solution to that was as simple as eating an avocado each day. I don't know what it is about this fruit but it was like a near instant miracle. Now I follow a paleo diet and have an avocado and don't have to wear a diaper or wish I could go after 2 weeks of back up. I tested negative for all things that could be tested for in the GI tract. That does not mean that something is not there...just not testable. I figured all of this out when my young child was stricken with Inflammatory Bowel Disease. In the last year I have spent a minimum of 20 hours a week researching journal articles from around the world regarding bowel issues. The big lesson I learned was to fix the gut flora first and then work with the actual cause or you will be chasing your tail...or guts around. He is in remission and doing great on enteral nutrition. I had them pop a GJ tube in and worked wonders. He is healthy and strong compared to his counterparts. So...back to etiology. I really think that many of my issues have to do with mast cell activation disorder. This has many of the same symptoms of IBD but without the internal blistering. In addition to doing a paleo diet, I eat mostly low or no histamine containing foods and never left overs. This means no processed food at all and as much organic as you can get. You have to get ahead of the pile up by using psyllium husk and senna plus a ton of water as soon as you have not passed stool in 24 hrs. The psyllium pulls in water but does not need help from your body to do so. Senna is a natural mover of things. The 2 combined are like a scrub brush for your guts. If you get the runs keep on with the psyllium husk but stop the senna. You have to keep a log. sorry my spelling stinks tonight.

I don't have any solid information for you but I can say what I experience. For years I had virtually no ability to go to the bathroom. I had "gut rot" so I call it. Nothing worked so I went on a liquid diet and that helped. Then my small intestines decided to not process food but it did come out the other end not digested and in an uncontrollable manner...so back on the liquid diet. Then through trial and error, I found that I could eat a few foods and gain nourishment from them. I eat these few foods and get the rest from liquid nourishment. After much research and learning about gut issues I found that some people go on TNP for a while to give their gut a rest and the nerves get a chance to recover....then move to enteral nutrition which is a hypoallergenic formula and then add some foods back in. This seems like a better alternative to having a bag. If I were in your place, I would try these things first....after you get unplugged. It took me years to get my gut to move again because the muscles and nerves had been out of commission for so long. They don't work great but good enough only if I am careful with what I eat and how much. I often get a swollen abdomen and have to stop eating chewable food for a few weeks and wait until the chaos passes. I have found that medication usually makes this worse, not better. When your gut is stopped up...medication can pile up in there and get to toxic levels depending on where it stopped. I have to have salty lemon water, senna (careful with the heart rate), no residue protein drinks, glucose... its more than that but its my own cocktail of things that keeps me alive while I wait. Sorry I don't have great news for you...but its not the worst news. I would be cautious of someone who wants to remove your colon as the first level of treatment....maybe get a second opinion.

needafix for that reason, I just began the process of signing up for 2 studies last night. They are listed on the main website of this forum. Im sure they will lead to more studies....and progress.

So if I only had blood tests for Sjogrens was that not good enough? What is this lip test?

Other situations get called diseases but we get called a cluster of syndromes. Its great that we get to talk to each other but until last year I personally wasted my time and money on so many doctors that I lost count. Not many Drs. are here learning or many of us would have had a dx a very long time ago and I, who had a dx years ago..had no treatment suggestions until January. The gap needs filling. Unless we put a real face, moving and motivating stories and a call it what it is, not much will change very fast if at all. We don't have to know all the possible causes to bring light and education. As a collective, we likely know more than we think we know...and the rest is just research. This is not just a support forum but a think tank. We are all highly invested. I don't see a barrier but an adventure that has yet to write itself as the real voice of many. If we want change, we must make it ourselves.

If I may??? What caused your hips to dislocate? There are conditions that are not able to be found via genetic testing that can cause this and many of your symptoms. It is my opinion that nursing homes are not good places. I don't blame you for not wanting to go or even refusing to go.

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I am sorry you are so sick! It is a double edged sword to have such a powerful and pushy dr. in your life. It still is your life and you make your medical decisions. I always try to compromise with such people. Asking for help...that is always hard and I think I don't do it for the reasons you stated. These conditions are very hard on ones sense of self efficacy. It is hard to come to grips with daily reality and thinking about the future when you are this bad off. I wish I could say something that could actually make you feel better...but the normal things people say don't suffice. I read your posts and I find you to be quite a hero to me. I don't even know you but I find strength from you.