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Sunshinegirl

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Everything posted by Sunshinegirl

  1. Id like to try to respond to your post. I am truly sorry for the loss of your son! and for your troubles. From my understanding...which is not vast....is that POTS is Postural Orthostatic tachycardia syndrome. Some people like me add an H in there for hypotensive. For me, this has always been implied knowledge of the condition. If you failed the TTT that bad, I don't know why POTS is just a suggestion????? That doesn't make sense to me. Does this Dr. have specific knowledge of this condition? From what I have read so far, there are many ways a mitochondrial disease can be expressed and just as many different genetic disorders. Iv been looking at MTHFR 1298 and 677. There are 50 others in this category that I do not have any specifics on. I have also been researching EDs type 3. I cant spell the syndrome. This is more of a connective tissue disorder of which I have many of the symptoms. I don't know at what level any of these cause death but they are inherited. I also see signs in one of my children. I have also had a plethora of tests and have not responded well to medication. Recently, after putting tons of pieces together it looks like Mast Cell Activation in addition to POTS and small nerve damage. Keep talking. What are your other symptoms? Do they come and go all together or just get a little bit better? What seems to help? What seems to hurt? Do you have more family history that you might not have considered?
  2. I like lemon water but I usually put a bit of salt in it. It can be sweetened with stevia instead of sugar. I use ecodrink and zipfizz. It can be costly with how much water we have to drink. I don't make it full strength. Depending on your insurance and what country you live in, you might be able to get a prescription for an electrolyte drink like pedialyte. My son gets it for free but he has Medicaid as a secondary insurance. the one thing I like about lemon water is that it helps keep a good PH. This prevents all other kinds of problems such as infections. Bacteria and cancer love acidic bodies. I don't have any references for this at the moment but you can go on google scholar and find articles about PH levels and disease.
  3. I just tried it for a couple of days...until my throat started to itch and close off. I swelled 11 lbs of water and was miserable. Nearly went to the emergency room. It did lower my HR by 20 points and that was great....but not great if I cant breathe. obviously, I am allergic.
  4. What I have learned so far ...which could be wrong...is that a low level is indicative of cells not being able to effectively complete the "energy" cycle. This seem to be true whether or not the lactic acid is normal or not. The body does not break down key nutrients needed by the cells to effectively complete this process. based on the way my test was done, I cant make heads or tails from the results. All it says is below 1. It does not say how far below 1. For this reason, I cannot compare the ratio as indicated in the articles above. Natops, what was your lactic acid levels? can you make the comparison? I got the above supplement and will be trying it starting today and will document any difference I feel. I will be doing what Chaos suggested.
  5. I must agree with Nymph on the advise. this is what I did. I still do it after any and all new medication for at least a week...because you don't know the cause of the POTS. This is so important. now I wear a sports heart rate watch all the time and still take BP often and record symptoms in a diary....so I cant be refuted. I also keep a diary of what I eat and how I feel life is going...so it cant be blamed on situation things or hormones.
  6. My experience with anything BUT Tylenol including NSAIDS and aspirin is terrible. With Aspirin, my BP goes too low because of its blood thinning ability, and with NSAIDS I swell. I can get away with an NSAID for one or 2 doses but not 3 and can only do it every once in a while. If Im already swollen, it does not fly at all. I don't know the cause of the NSAID swelling per se. I am careful to read every ingredient in an OTC medication.
  7. your experience and lack of desire to complain sounds a lot like what I have gone through. For 10 or more years I kept being dxed with panic. I had to prove it was my heart rate and insist on being taken seriously. Please don't wait or not take this seriously. Anyone who wont listen to you, is not worth seeing again. Its so important to stand up for yourself I really hope you find what you are looking for in treatment as well as support here.
  8. I cannot tell you scientifically but I almost never get sick. Maybe once or twice a decade. Like you, the downside to my life is that I seem to be allergic to myself. I break out in hives, red patches, swelling, GI issues that have "no apparent cause". I don't have allergies in my nose but I do use a netty pot once a day because I like a clean nose. On the rare occasion I feel like Im coming down with something, it is usually gone in less than a day. I do have transient low grade fevers with no other symptom. My son has a hyperactive immune system that has been diagnosed.
  9. Brushing my teeth and tongue makes my heart race in the 160, get sweaty and have to lay down. That seems pretty weird to me! Trying to talk loudly TMI.... but trying to not sit on a public toilet. I have fallen in both directions. not so funny...
  10. Iv been researching non stop for a while now and it has come to my attention that there are many other causes to POTS than girl hormones. Some others and I have been discussing mast cell issues, and a number of genetic issues. Also, it has been my experience in my profession that men are way less likely to seek help because many have been socialized to tough it out and pull them selves up by their boot straps. Seeking answers to what seems to be a (debilitating) ghost issue might be hard for some to do. Women tend to talk, think tank over things, support....these are all help seeking behaviors that are encouraged in our socialization. As with many conditions, the numbers are only based on those who report. For instance, more women have depression yet more men commit suicide. So, if men reported depression and were treated, these numbers might change drastically. I cant say for sure that the statistics for POTS would change, but I would not be surprised if they did. I have learned just as much from the men here as the women. I am certain that you have much to offer and learn without being concerned about gender.
  11. Thanks all. I stopped the beta blocker last night and my HR is off the charts again this morning. What can you use to decrease your HR? I stopped eating and drinking for the most part until this passes. I sip of pedialyte and put a little more sugar in it. Its either that or go to the hospital and get an IV. They don't understand what is going on, so they wont give me one. I too have only a few good hours a day and several days of the week that are pointless. Some days I want to sleep 20 hrs but I cant even if I need to because of the kids. I don't make any plans anymore. I feel like my bed is my best friend. I get things done 15 min at a time. I am about to try to get my student loans erased because I cant work....but this requires a complete dx. I guess I could qualify with untreatable severe IBS. Nothing I have tried to stop this has worked. I too have funny blood work. Some things are low and others are high. You are very blessed to have your parents to bring you places. Thanks for being friends through this journey!
  12. Yes. I just looked it up. That scale of bendiness.. I can do all of that and much more! My father also had a mitrovalve issue and died very early. I think it was sloppy and then he got an infection in it and that's what did it. With all your findings and treatments, have you been able to work a regular job very well? I find that the allergic reactions to "life" and staying hydrated enough for the POTS makes it very hard. Not responding well to medication is not helping. I have learned so much from you in such a short time. I cant thank you enough for your patience!
  13. Yes, it is highly suspected that I have mast cell involvement. I was asked to do labs during an attack but the attacks are always so severe that I cant drive or do anything. By the time he gets home, the walk in labs are packed. They tell me they wont be able to get to me before they close. Its a lame excuse. My not so lame excuse is that only a few labs have the stuff it needs and know how to take the blood and store it properly so that the specimen does not degrade. On the occasion I have made it to a lab, I was turned away. I think I could have been properly dxed years ago if it was not for poor handling of specimens or a more timely arrival on my part. I had not had too many bad attacks since I started a low histamine diet last spring and live on antihistamines. In years prior I took out all xenoestrogens and many phytoestrogens. The swelling attacks have been more mild and with all that's been going on, its like a "normal" state. Iv been so fed up that I detached from my physical experience because I have felt so hopeless. I think my dr had it in his mind that it was just all in my mind at times. Also, the high HR and other nerve issues keep clouding the picture. I have maybe 15 symptoms that cascade into one big ball of mayhem, none of which point to any one condition. My dr. admitted that 10 yrs ago when we started this journey that not many knew much about this family of issues that overlap in many cases. Every year or so, I give up then eventually believe in myself and try again. Unfortunately, I think some nerve damage has occurred that cannot be undone. Like you I am also hypermobile and have weirdly stretchy skin but I don't have strange scars. Do all people with ED have scarring? I have had the majority of my symptoms since childhood except nerve damage and high HR.
  14. I use henna based permanent color. No ammonia and it does not damage your hair. Actually makes it shiny and strong. These henna based ones or natural ingredient will usually use some kind of peroxide for lighting. It really all smells like botanicals. If you want to try reds or browns, you can use straight henna powder but be sure not to let it come in contact with metal during the mixing process. I use glass and wood or plastic. Metal creates a reaction to the plant chemicals. Then you can get a shampoo that is henna based to help keep the color longer. It does not last as long but it is cheaper if you do it yourself and get it in bulk powder. If you have lots of hard to dye grey it is better to go with the lighter colors or highlights.
  15. I tried a beta blocker again for the second time in quite a few years. I have a history of angioedema but had more under control these days. I started the beta blocker a few days ago and I am a swollen mess. My throat was somewhat swollen last night and it scared me. This is the rather quick reaction I get to most OTC medication. I have had nothing new except the beta blocker and only ate vegetables to make sure any reaction was not likely food related. Anyone had this?
  16. could the intolerance to estrogen based BC , the swelling episodes...be angioedema type 3 which I think is estrogen dependent? It is interesting because in the past I was tested of angioedema type 1 and 2 when type 3 was a new concept. My c reactive proteins were off but not to the level required for 1 and 2. It was supposed that I had this new type 3 but there was no testing for it back then. One of the tells was these brown spots on my skin that would come and go or move around along with all the typical symptoms. It always got worse around high hormone times. I also has endometriosis and got it ablated as well as my uterus. That was the best decision I made but it took some doing because although I already had 2 kids and a long marriage, I was considered young and had to convince the dr that I did not ever want to be pregnant again. That did cause a decrease in symptoms as these endo cells grow wild and make their own estrogen mess. Also, I did not have the pain of menstruation but I still have my ovaries so I don't need hormone replacement. At that time I also had a terrible time with chronic hives and weird red patches and seemed to be allergic to the sun and myself. I take antihistamines daily and if I don't it will be just a few days before Im an itchy mess again. So now, I still get non pitting swelling that is clearly worse with hormone cycles. When it breaks, then GI symptoms are terrible. Then I work on rehydration....its one big puffy POTS cycle. Adrenaline is definitely an issue. I can feel it. Its like a long rush for no apparent reason. It causes that feeling of being disconnected, weird, or doom. During this time, there is an increase in sensory awareness that is overwhelming. It is easy to become aggressive in this mode. This might be consistent with a fight or flight experience. For me, taking supplements for adrenal support is helpful.
  17. Thanks. I looked at the reviews and thought it was worth a try. Not too expensive either.
  18. I know how you feel. tried for the better part of decades to get someone to listen to me. In my experience, they don't listen to women...sometimes even female drs. are no better too. I gave up so many times. What worked was documenting my symptoms, especially HR and BP constantly. I screamed at a few doctors, reported 1, refused to pay 2 for "no real service rendered".... Just because you don't pass out does not mean anything. That dr. is misinformed to say the least. Don't give up on yourself!
  19. What part of NC? I live In VA on the eastern line. There is a neurologist in Norfolk that has a whole POTS clinic. One of 15 in the country. His name is Dr. Chemali. There is usually a long wait time so call and get on the list. They can test for genetic issues, do biopsy...anything you may need and it may not be such a long haul. I do all the things you mentioned but it wasn't enough. I just go on a low dose beta blocker and it brought my HR down 20 beats no matter what position and what I am doing. I can finally do something for more than10 min and not have to rest all the time! I had to counter the beta blocker with more salt and water. If my bp feels too low, I get moving and have a cup of coffee. So, far, it has not been too bad. I do take the beta blocker at night though because it makes me tired, and loopy. Also, that way, Im laying down so Low BP is not so much of a concern. The side effects are supposed to go away in 2 weeks.
  20. If you are filling this out for a child, they now look at college savings in the childs name. So if you have a 529 plan, you have to shift it to a similar fund not in that childs name. That prevents you from a lock in rate for a state college...but your medical bills would likely exceed any cost of college anyway. Im not a tax advisor, a lawyer or anything of the sort...just learned a bit
  21. Im referring to an aspect of Medicaid that is called long term disability that differs from state to state. It covers children fully but adults can get dual coverage as your link describes. So. heres the deal. They are required to deny you at least 2x unless you are a quadriplegic. You have a better chance of getting on the 2nd try with an attorney but even if you don't get an attorney, you will likely get it on the 3rd try...but that's 6 or more months of waiting..who has time for that! The reason for this is...if you really need it, you will fight for it hard or be very persistent. This is not the case with children under 18. They are usually approved within weeks but if you are middle class, good luck getting info on how to fill out the paperwork. Under the topic Ivig, I described how to beat the system at least in VA. We are a commonwealth and joke that it is a dictatorship. We have so many elected officials on every level but we have no idea what they do. So, If you are an adult and you don't work due to disability there are ways around things. One thing you have to do 1 yr in advance is to put all of your assets in the name of a "family trust". You can be an executor of that trust but now the trust "owns" everything and all you have is the fuzz in your pocket. You cannot own more than 2,000 in your name of anything. (and don't wear your family heirlooms to meet with the SSDI people!) This is also a very wise idea should you accumulate huge bills that you cannot pay for. You cannot loose your house or cars or other assets that are in the name of the trust. I even put my life insurance policy in the trust. They cannot do anything but garnish the wages that you DONT make... If you really, really need the help in the way of coverage, you can do some more moving around that is totally legal to put you in the brackets that government sets out for you but this goes into a ton of detail and is very situation dependent and not always feasible. Another new thing now that its tax season is that if you must file jointly, and you have big bills you can file as an "injured spouse"...injured financially that is. That way one spouses bills don't damage the others credit score and such. This is a rather new thing since the latest big, long recession or mini depression.
  22. Another thread brought this lack of support to my attention. I got it for my son but it was not easy. Please mention the state you are in and if you were successful and how? Each state is different...so this is important. You can get it regardless of your age or financial status. If you were turned down, what was the reason? What state department agency did you use in your state?
  23. Ok so, Medicare is different than Medicaid. Medicare leaves you with a doughnut hole of expenses but Medicaid pays in full. This may have been due to what your state offers or does not offer. Like I said, most wont tell you about the option of Medicaid long term disability. It may have been yet another loophole if you were at the age of 60 when all this happened as it is usually for those who are children when they become disabled or those who don't qualify age wise for Medicare. But you are only 55 right? So this may still apply to you. When you were assigned disability, were you also assigned a case worker? If not have your Dr. write in his note that you need a case worker as part of your disability. So heres another loop hole you might want to explore...its a leap but I would try anything. Do you have neurological issues that lead to brain fog or mishaps in understanding? If so, you might be able to get your dr to write a note stating this as part of your disability and then you can tell them that you did not understand that you only had 6 months to get gap coverage. If you go to the Department of social services or human services and tell them you have disability but you need a case worker to help you understand what is going on...they cannot refuse you. They may be able to turn back time or put you on an additional state program that picks up the tab after the Federal Social Security/ Disability/ Medicare pays first. So in the case of my son, we use my husbands insurance as the primary and Medicaid as the secondary. In this way, we have no co-pays. What state are you in? I can research it for you and get you the answers so you don't have to be bothered. I already know the tricks of the trade and can usually get what I need in a week or 2 depending on how often the people answer the phone or call me back. I have done this for others as a "counselor" which I am...just not paid or as an "advocate" which I am just not paid. I don't see any reason why you cannot have this fully paid for if it is deemed medically necessary or at least have everything else paid for in full. You have to fight for it, play dumb, or claim brain fog, depression, blurry vision...whatever kept you from understanding the concepts in that window of opportunity. They make that 6 month mark for a reason...so that most wont get in it! I think it is discriminatory against a person with a disability. Drs. cant even understand the rules and regs...let alone a sick person who is just fighting to get out of bed and eat!!!!! Also, keep all of your receipts, including travel expenses, lodging etc...to claim towards your 10% for your tax deduction. If you have to pay for this out of pocket, you will likely exceed this minimum and you will get much of it back. Have your dr. write you a script for everything even if you cannot use insurance for it. As long as there is a script and a receipt, you can prove it was medically necessary and claim it cleanly if you were to be audited. The little bits add up...so everything that comes out of the pharmacy...lotions, potions, pads, medical tape...he can write it all on one script and put 56 refills on it for each week of the year. Just give him or her the list and the reason why.
  24. I'm not certain about this particular drug but when my son (11 now) was dxed with crohns last year, I looked at the cost of biologics and other expensive treatments and the side effects. For a child so young I was not willing to take the risks and there was no way I could pay for it. We were already in over our heads catastrophically! So, I decided to treat my son with enteral nutrition because it is used widely in other developed countries and has NO side effects. When uses as a primary treatment of a disease, it is fully covered by insurance. He was in full remission in 2.5 months, put on 45lbs and grew about a foot. Because of the autoimmune component, he has to eat a low histamine diet when he does eat food. I'm certain he has mast cell involvement. All of my decisions grew out of a more in-depth understanding of the immune system and how it impacts so many systems if it is even slightly off. Even though I don't have crohns, I have debilitating GI issues likely due to nerve damage and mast cell. When people ask me whats wrong, I tell them I am allergic to life and food. When I saw how well he did, I moved to a hypoallergenic organic protein shakes and vegetables for the most part. If I deviate much, I will be very sick. To the issue of money: Depending on your situation, you may be able to get what I finally got for my son...long term disability. It pays 100% of costs or picks up the tab after your primary insurance. You may only get it if you cannot work and it is not dependent on your family income. Some states have it in easy access and others may not have it at all. I was so surprised that no one told me of this last year when I was drowning in debt! I thought it was only for those living in poverty and did not know that middle class people can have access to it to. If you are in a state that has it, no one will tell you about it and it is nearly impossible to get your application submitted. They will tell you to fill it out online but you cannot really do that because they intentionally make it so that if you fill it out correctly for this form of insurance....the submit button wont work. You have to print it and intentionally fill it out slightly incorrect and turn it in by hand. When they see that you have screwed up in the first 5 questions, they will be forced to input your information into the system correctly. When it is done this way, you can bypass a 6 month wait and get coverage in just weeks. This is when playing dumb is worth it! I don't know if any of this information will benefit you.....
  25. Interesting. My lactic acid levels were fine but pyruvate levels were low. I just don't know how low is "low". All I know is that they should be at least a 2. I think I am not acidic because I eat and drink things every day that create a low PH in the body. Some think that acidic food makes the body acidic. I have found this to be partly true but not always. I drink pickle juice for the salt and the alkaline nature of vinegar. I also have lemon water. I get eczema if I become acidic. Also, I have no refined sugar or processed food. If I have grains they are ancient grains. Rice and wheat are not good for me. Also, I cannot have tomato sauce. I can have fresh tomatoes if that is the only acidic or high histamine food I eat in a day. I had not linked the muscle pain/burning to lactic acid aside from what is normal when lifting weights. But now that you mention it, when I do eat bad, I have all kinds of muscle twitching and pain. I have yet to start anything for methylation because I am new to this probable cause. I am still in the phase of doing a bunch of testing and did not want to skew typical findings....but you know what...Iv lived long enough with this and I don't think I want to wait for Drs. to catch on. Can it hurt to treat with supplements? I don't think so. Worst thing is, I waste money and feel bad for a day...and then decide that it is not for me. So far what I have read is that the body needs SAMe. and B vitamins. I already take all the B's and have high B12 levels. What supplements have you tried that have worked?
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