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Bluebonnet08

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About Bluebonnet08

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  1. Bluebonnet08

    Recent ME/CFS research

    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/
  2. Bluebonnet08

    PLEASE READ/HELP!!!

    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.
  3. 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.
  4. 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.
  5. Bluebonnet08

    Guide for IV saline fluids?

    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.
  6. Bluebonnet08

    IVs as a treatment

    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.
  7. Bluebonnet08

    IVs as a treatment

    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.
  8. Bluebonnet08

    methyl folate & b12

    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.
  9. Bluebonnet08

    Low iron.

    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.
  10. Bluebonnet08

    Breastfeeding & POTS

    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/
  11. Bluebonnet08

    methyl folate & b12

    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.
  12. Bluebonnet08

    POTS pledge

    Awesome - I'm going to print this one out!
  13. Bluebonnet08

    POTS pledge

    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.
  14. Bluebonnet08

    MSA?

    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:)
  15. Bluebonnet08

    MSA?

    The twitching could be an electrolyte issue... or low magnesium? Have you seen a chiropractor?
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