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Bluebonnet08

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Everything posted by Bluebonnet08

  1. This is a new research study out of Harvard. They have collaborated with The Open Medicine Foundation (currently working to cure ME/CFS). This study looks at shortness of breath in people with POTS. As you scroll through, click to "read more" and it will take you to the full synopsis. Thought it was pretty fascinating. Could potentially explain and (cure/treat) the problem of shortness of breath in POTS. It is personally something I have struggled with so I would love to have an explanation! http://endmecfs.mgh.harvard.edu/heartpreload/
  2. Sorry I didn't see this. I was just reading an article and posted a separate post about this. I was interested in trying it, but I don't know. From the article I read, it said: it "sells for $395 (or $495 with a package which includes a Fitbit 2). It comes with a risk-free guarantee. Pay for it now and if it doesn’t produce results over the next 45 days, return the device and get your money back with no restocking fee." Seems expensive, but you could always send it back and get a refund if it doesn't work. If it does, it would be amazing! Would love to hear more about this if anyone tries it. I am going to ask my doctor about it. Another doctor that works at my doctor's practice was actually quoted in the article as saying it was helpful!
  3. This medical device seems interesting. Has anyone tried it? I'm going to ask my doctor about it. From an article: "It reversed the resting tachycardia that eleven women experienced after 20 minutes of sitting. It’s been shown to increase blood flows in the legs, and it reversed the blood pooling in the legs of almost 50% of women in one study."
  4. That is awesome! I have been using IVs as a treatment for almost 3 years. I have seen major improvements in my POTS episodes and ME/CFS by using them. I have to use lactated ringers (NOT saline) or I do not get the results. The saline actually causes problems, I've found. I've done some research into the two, very interesting. I get 500ML of lactated ringers every 6 days at a Hydration Clinic. I wish I could go longer in between, but while Im nursing it's not possible. My benefits are: significantly decreased POTS (tachycardia almost completely managed with IVs), increased energy, less crashes, does improve my mood (depression) significantly. I have seriously gone into an IV crying and feeling very depressed and sick and left feeling almost "normal"... well, at least more normal than usual. I would never, ever go back to living with these horrible diseases without this treatment. It is VERY VERY important (personal opinion)... but there are also some studies that show it helps people with POTS and ME/CFS. I do sometimes experience side-effects - sometimes some weight gain immediately following an IV (fluid retention), irritability following an IV, sometimes fatigue/jitteriness for a day after the IV, sometimes not. My "best" day is usually 2-3 days after the IV. Keeping my ferritin up has also decreased my POTS episodes.
  5. I hope that this is appropriate to share here. It's the recent research being done into ME/CFS. It's very promising that they are close to understanding the root cause and maybe even being able to fix it! Of course more research still needs to be done, but it's very interesting & exciting. I wanted to share it here because I know that many with POTS also suffer from ME/CFS. Also, in another article they mentioned that this "metabolic trap" may pertain to other diseases within ME/CFS like fibromyalgia and even POTS! Very interesting! https://www.healthrising.org/blog/2018/10/18/the-metabolic-trap-shines-during-the-symposium-on-the-molecular-basis-of-me-cfs-at-stanford/
  6. Hey, I'm so sorry you are dealing with this! I have a couple of questions - 1. Are you taking any type of birth control pill? This made my POTS a lot worse. 2. Have you had iron bloodwork, especially looking at ferritin? 3. Is there any way you can get regular saline IVs? You mentioned you got one at the ER and felt better for the following week. Maybe you could try them weekly for awhile to see if your symptoms improve. For the shower- I would recommend a shower chair. It doesn't have to be a permanent thing, but it helps significantly. My specialist said one of the hardest thing a person with POTS can do is shower (standing still, hot water, raising your hands above your head to wash your hair). I had to swallow my pride & just get one and it really does make a difference in my energy levels! You could also get a handicap placard to make walking easier around campus. That's what I had to do for graduate school. For the SSRI, it is dangerous to start/stop them abruptly. People should wean off of them slowly and always under doctor's supervision and ideally letting family/close friends know as well for support! It can be difficult. I am SO sorry you are going through this. It's horrible I know. I hope you will start to improve over time.
  7. I'm so sorry that you are going through this. Online you can google "the poor man's tilt table test" and do a little test at home to see if your HR/BP increases while standing. Three things that have helped me: 1. Increasing ferritin levels to 80+ 2. Regular IVs keep the attacks down 3. Low carb/low sugar/no caffeine Hope you start to feeling better soon.
  8. I am not sure why it is different, but it definitely is!! The fact is that the etiology of this disease/syndrome is not understood. Once researchers make inroads into the root cause of the disease, maybe we will understand it further. The salt/fluid didn't really help me, but IVs have been a game changer. It is cruel and wrong for the cardiologist to laugh or ridicule you for asking about this. Very unprofessional. I would find another cardiologist. Mine recommended IVs to me and was very compassionate. This is a video that recently came out of The Open Medicine Institute for ME/CFS, but he also addresses POTS, which is very common with ME/CFS. One of the top treatments he talks about is saline IVs. Maybe your cardiologist should educate himself and watch this.
  9. Right now I get Lactated Ringers every 5 days. I get 500ML, run over 1-1.5 hours. I go to a Hydration Clinic. (most big cities have them)... sometimes they are called "Hangover Clinics", but anyone can go. The only I go to has other POTsies and people suffering from other illnesses. I've experimented with the amount and how often to go. Ideally I feel best when I go every 4 days, but I am worried about my veins. They can use different veins in different places like your wrists. This has been the biggest treatment to make a difference in my life. I feel bad for anyone who is not getting this . I suffered for about 10 years without knowing about this and it was horrible. This is known as a standard treatment for POTS by the professionals in the field, so it's very upsetting when doctors won't write this basic script.
  10. I was just reading your other post - it sounds like you could benefit from them to help stabilize your symptoms. I live in a major city and there are two hydration clinics. I can just walk in and get them whenever I want to. I don't need a doctor's orders. However, that being said, my autonomic specialist, cardiologist, OB, & primary care physician have all at various times written me a script for IVs. With my cardiologist and autonomic specialist, I was able to get the IVs in their offices. I am not sure where you live, but you could look for a hydration clinic if you are in or close to a major city. Sometimes they are touted as "hangover" clinics, but the one I go to serves all kinds of people with all kinds of illnesses. If you don't have one that is close, it is very important to get a script from a doctor or specialist. They can sometimes do it in-office. There is a plethora of research on POTS & IVs so they would be remiss if they did not write a script for you.
  11. Does anyone get IVs as a treatment for their POTS? If so, how much and how often? Since I gave birth, I'm getting 500ML of lactated ringers 3 times a week. It seems to be helping quite a bit. I am still struggling with quite a bit of symptoms and severe fatigue, but I am much more functional than I was last postpartum without getting them.
  12. Thanks for the input! Is there a good brand that you could recommend and what amount should I start with? It's interesting that B vitamins seem to make the surges worse when the system is already reeved up. I've had that experience with many supplements as well. I am going to start on the methyl folate & B-12 and hope it makes a difference.
  13. Yes, it seems like this may be common in people with POTS. I had extremely low ferritin when I had my worst symptoms. Research backs this up: http://n.neurology.org/content/82/10_Supplement/P1.034 https://www.ncbi.nlm.nih.gov/pubmed/23720007 The basic summary is that the optimal ferritin for those with POTS is 80 or above to improve symptoms. The reasoning behind this is due to the fact that iron is the building block for every neurotransmitter in the body/brain.
  14. I just wanted to mention something that my lactation consultant had told me about. It's something called D-MER and it can cause depression, anxiety, or even agitation while breastfeeding, especially during the letdown. I mention this on this forum because it is a relatively new condition that is not understood, but may be caused in part by dehydration. I know many of us are dehydrated or fluid issues may be a problem, so it might be more common in those with POTS. I think I had this while breastfeeding my first; I had a much harder time than "normal" people and maybe this is why. This time around it seems easier. Just thought it might be good to bring up in case anyone was breastfeeding with POTS and might have these symptoms. It could explain part of it. https://d-mer.org/
  15. Has anyone had any experience taking methyl folate & methyl b-12? These were two of the supplements recommended by the CFS specialist that I see, but I was also hoping they might have a positive impact on the POTS symptoms as well. I am getting the MTHFR gene test as well.
  16. Awesome - I'm going to print this one out!
  17. Did you make this up? It's so good! I really like the line "my rock bottom is someone else's peak"... something to keep in mind when fighting this. It's all about perspective.
  18. Hey - I just did a quick search for these. Side effects for all are stomach problems, nausea, abdominal pain and fatigue/weakness. For depakote, I saw a side-effect is tremor. For rozarem a side-effect is worsening sleep problems. For gabapentin a side-effect is dry mouth. Even with D3 I had sleep disturbance if I didn't take it in the morning. I was on several medications that made my condition much worse. I am not saying the medications are the cause and there isn't another issue going on, but medications can definitely have side-effects, even if they didn't at first. You could discuss it with your doctor or do some more research into yourself. You may need to be on all of these or there may be another option or medication. Just something to consider. I wouldn't start/stop anything without a doctor's supervision though:)
  19. The twitching could be an electrolyte issue... or low magnesium? Have you seen a chiropractor?
  20. If I were you, I would get tested at an autonomic center. They are the only ones that can diagnose you, from my understanding. Maybe a cardiologist could, but autonomic centers are very skilled at understanding these disorders and running the proper tests. I don't know how a primary care physician could say something either way if they hadn't run the proper tests at an autonomic center? What medications are you on? Could any of them be contributing to some of the side-effects? From my understanding Sjorgen's can sometimes be missed in standard tests. The only 100% way to test it is through a lip biopsy from what I've read (I could be wrong here)... I would try to be really thorough with that due to the dry eyes/dry mouth. Once again, an autonomic center may be able to help you more with that. I had a really good experience at Sentara in Norfolk, VA.. they have a really good center there and I am going to Vanderbilt in October to do more testing. Have you done a full iron panel? I used to use "Deep Sleep", an herbal supplement to help with sleep. You can get it on amazon. It was the only thing that ever helped me with my sleep problems. As for the irritability, that could be a blood sugar issue... maybe cutting back on carbs/sugar... keeping your blood sugar stable with protein and fat can be helpful with dysautonomia. Irritability issues could also be hormonal... could you get a hormone panel? They could also be the result of a medication side-effect. I would wait to get more testing to try to figure out what is going on. At this point there are many things it could be. I know how easy it is to get scared, but you have to take it a step at a time. I'm sorry you are going through this. I know how scary it is. A few years ago, when trying to figure out the root cause of my POTs, I was given a mistaken diagnosis by a doctor... the diagnosis was for a horrible degenerative condition. I spent almost a year thinking I was going to have this horrible condition, only to see a specialist and find out that I did not have it at all!! I guess my point is to take it day by day. Just go only on the testing and results you have and keep fighting to get a logical answer from a specialist. Hang in there.
  21. I've had low blood pressure a lot. They say low blood pressure is technically anything under 90/60 with symptoms. I have had many, many readings with the top number in the 80s, even high 70s. I've had the bottom number in the 60s & low 50s. The best way to get it up fast is to chug 1-2 cups of water or gaterade. It should get it up fairly quickly. That's what has always been advised to me by doctors. I now get regular IVs and it keeps my blood pressure from falling quite as low.
  22. I used the "Deep Sleep" Herbal Supplement before I got pregnant. Was the only thing that helped me. You can get it on amazon.
  23. I only ever had bradycardia after I gave birth. My cardiologist thought it was because of the fluid shifts... he advised getting 3 IVs a week until the bradycardia stabilized. It worked and I am not having the bradycardia anymore. Maybe you could try it. I got the iVs at a Hydration Clinic.
  24. That is so interesting! Thank you for sharing. My CO2 is always low on the lab tests. When I was having severe tachycardia, my cardiologist told me to breathe into a brown paper bag. It did seem to calm it down a bit, which would make sense if this study is correct, as that increases CO2. They are mainly proposing that low blood volume, low blood pressure, and low CO2 are causing POTS from what I understand? This could explain why IVs help to some extent, raising the blood volume and blood pressure. It also says exercise raises CO2 which is why some people feel better doing that. Maybe I didn't read it closely enough, but is it saying WHY our CO2 is low? What is the mechanism causing that? Also, what can we do to fix it? Would love to know that. I found this part interesting- it would explain why when we start to get into a crash state with multiple attacks, it further depletes us. In other words, once I get into a state that I start having attacks, it seems like more attacks come.... this explains why....: "Our study suggests that postural hyperventilation is not a compensatory mechanism for POTS; rather, it causes POTS. The respiratory pump (increased intra‐abdominal and decreased intrathoracic pressures) does not improve CO in subjects with POTS14 because reduced blood volume and extrathoracic pooling of blood severely hamper venous return. On the contrary, if hyperpnea occurs at high operating lung volumes,53 thoracic blood volume may be even further reduced.54"
  25. My lightheadedness diminished significantly after I got my ferritin (iron stores) up.. have you had a full iron panel?
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