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  1. Today
  2. @voxel - it is different for everyone. In my case IV fluids correct both hypo AND hypertension. But I have hyperPOTS - it will not work like that in other types of POTS. It all depends on what the mechanism of your dysautonomia is ( vasoconstriction vs vasodilation vs neurotransmitters vs SFN vs low blood volume … )
  3. Yes - too much salt without enough water is bad. You want to increase BOTH.
  4. So IV fluids are primarily for increasing BP and blood volume? I'd be curious what IV fluids does when my BP is high? I find drinking water/salt/electrolytes immediately drop my BP when it is extremely high. Last time in ER, I rejected an IV because my BP and HR and sodium were high. Bad decision?
  5. The cardiologist who diagnostic me mentioned ingesting high salt. I tried add salt to every meal but found it too much so I ended merely eating high salt foods like chips, soups, pickles occasionally. No new meds. I've been prescribed an alpha/beta blocker and anti-anxiety pill but don't plan to take any of those until a major flare-up day. In general, I might be a little dehydrated these days. I thought I was getting enough fluids but I did have a morning where I woke up with 168/85 BP after eating salty foods late at night and not drinking enough water. I worry too much water will flush out the sodium so I only drink with food or after exercise or when my mouth feels thirsty. I don't understand my body in general. I have a salty taste on my tongue and sometimes it's because I need salt and sometimes it's because I need water. I guess salt loading is all about ingest salt and water together, right?
  6. KiminOrlando

    Possible gastroperisis!

    Sounds like gastroparesis, like everyone else said. I have it and the pain level is unreal. It feels like you vomit until there are no fluids left in your body, then you get dehydrated, which made me faint. Yes, to a gastro. Yes to the glowing eggs test. I take a med called Domperidone, but it isn't FDA approved, so many docs won't write a script for it. It changed my life though. It is widely used in Europe and Canada and can be compounded in the US. It doesn't work for everyone. I guess it depends on what kind you have. I would say stick to soups, eggs without the bacon etc, and yogurt and see if that helps until you can get to the doctor. Hang in there. Gastroparesis pain is just awful.
  7. Pistol

    Guide for IV saline fluids?

    In certain treatment refractory patients they do IV saline - my specialist gave me an order twice for 1 l NSS over 2 hours weekly. It did not help me - personally - all that much but 16 - 24 hours of fluids at 125 ml/hr has shown great improvement. Currently I have an order for 1 l LR over 6-8 hrs.
  8. Pistol

    Fainting While Sitting and Laying Down

    Unfortunately I do not know of any neurologists - my symptoms are mostly cardiovascular in nature. - Have you checked on the Dinet physician list?
  9. Could someone help how much you should get a week for iv saline? I been reading about it but never tried regularly. I thought only try 1 bag once? But i think i remember i couldnt really notice improvements. I got it years ago cause my bp is a little low and after its still quite low too. Maybe only a slight change. I try to find an info but still isnt clear. Such as how many bag/litre per week? How often/how many days per week? is it just the regular saline they usually infuse you through your arms, veins when you diarrhea? If you have to do it for long i think its hard if you have to keep going to hospital and getting infusion almost everyday for hours. Wouldnt that caused trouble to the veins? Otherwise you require to buy the device/port at home? Quote Edit
  10. Could someone help how much you should get a week for iv fluid? I try to find an info but still isnt clear. Such as how many bag/litre per week? How often/how many days per week? If you have to do it for long i think its hard if you have to keep going to hospital and getting infusion almost everyday for hours. Wouldnt that caused trouble to the veins? Otherwise you require to buy the device at home?
  11. Clb75

    Northera question

    Oh, thanks for the heads up. I’ll check with the doc to see what they suggest.
  12. I had a very hard time getting to try this and to keep getting it prescribed. Doctors often say "if you can drink, you don't need IV fluids". By hearing from all of us who have gotten good results from IVs, it's not true in every case. I think it's the fact that you are forcing all of the fluid right into your vessels, because if you aren't dehydrated, why would your GI tract hold onto much more water that you drink? Plus, yes, the pressure being forced up. I don't think i have EDS so I can't speak to that. Good luck, I know exacly how you feel wanting to try this and having so much trouble getting it arranged.
  13. Iheartfrogs217

    Fainting While Sitting and Laying Down

    Hi @Pistol, thanks for your reply! I’m so sorry to hear that you have seizures and faint. These diseases are truly horrible! If you don’t mind me asking, where did you hear that SFN can cause vasoconstriction and dialation? Do you know of any published papers that talk about this? I am seeing a neurologist, but I’m not sure that they are aware of this because they said they don’t think SFN explains the near syncope while being in a nonupright position. However, I don’t think that they specialize in ANS disorders either. Do you know how to find good neurologists that do? Thanks again!
  14. Pistol

    Fainting While Sitting and Laying Down

    I have hyperPOTS which causes excessive vasoconstriction. I used to work as a nurse and would frequently pass out and even take seizures at work - even while sitting. This was always preceeded by a brief episode of feeling ice cold and tremors and people who were there always said I would get a blank stare and fall out of the chair. I also have had seizures and syncope while lying in bed ( often in hospital for bad flare ). The seizures are considered convulsive syncope - caused by no circulation in the brain from vasoconstriction. SFN can cause vaso constriction or vasodilation which causes syncope and this not limited to being upright. Are you seeing a neurologist? I would find one that is specialized in ANS disorders.
  15. @joiedevivre - I have hyperadrenergic POTS and NCS. My BP goes both up AND down. Over the last 8 years I have been admitted for IV fluids to stop a bad flare with severe orthostatic intolerance several times a year. Sometimes the ER would only give me one bag bolus but that only would help for a short time and then the symptoms came back. But when my PCP would admit me for 24 hours IV fluid the flare would always stop completely and I was good as new. Some docs would refuse IV fluids b/c "I am able to drink fluids". These docs completely miss the point: some people have hypovolemia and the IV fluids help for that and stop POTS symptoms, but in my case it is that the fluids help counteract the ANS to constrict all of my blood vessels which interrupts the bodies faulty mechanism. Noe I have a port and get weekly infusions at home and feel great!!!! --- There is an excellent article about POTS and IV fluids on thedysautonomiaproject website, you can print it out and give it to your cardiologist. ( I have a wonderful PCP and cardiologist and they have learned along with me from the articles I provided. ) Next time you get bad bring that article and demand fluids and see how it goes - most likely it will help you too!!!!
  16. Ok, that makes sense if you don't just pee it out immediately ( as I seem to with water). But what if you have Ehlers Danlos? Wouldn't the veins in your lower body just stretch more to accommodate the extra fluid and none reach your upper body? I'm very worried about stretching my veins. Also, I agree that it seems unlikely that trying it once or twice would cause any harm but I hear most people's doctor's won't even consider it? I know there are risks with a port or frequent transfusion but I'm only hoping for one or two chances just to see! I really hope my doctor will at least consider it. I hear so many people say it helps. Are you prescribed by a "pots doc" or a regular cardiologist?
  17. Hi there! I have been on IV therapy weekly for about 3 months and it helps a lot!! It is different in that every bit of fluid ends up in your circulatory system and creates more pressure in your veins, thus raising pressure better than simply drinking fluid. When you drink water not all of it goes directly into your circulatory system. That’s why it doesn’t make you feel as well as the IV does. Try mentioning that IV therapy is one of the most benign treatments available for POTS. It’s just saline afterall. If it makes you feel a lot better and is safe, why wouldn’t a doctor prescribe it?
  18. I, like many, drink lots of water and salt, and yet it helps nothing at all, and I hope of trying IV saline. I mentioned it to my definitely temporary cardiologist and he basically thought it was a funny and ridiculous suggestion and told me that's for people who have diarrhea or nausea and are admitted to er for diarrhea or nausea. So I'm wondering if there's an argument other than that many POTS patients are helped by it and that's a fact? I read that some people with POTS have digestive issues which prevent drinking huge amounts of water. Is IV saline only for those people? I not only get NO help from drinking 3 liters and over 5 gr of salt a day versus drinking a normal amount, but doctors seem not to care that it takes SO much energy to drink water. Many days I feel exhausted from drinking half a 12 oz cup of water let alone the energy over the whole day. I also pee at least every half hour when I drink this much and since there is a limited amount I can stand in a day it's exhausting to pee. I don't have money to try a hydration bar to argue from experience. This illness has already cost me over a hundred thousand dollars if debt and continuous added debt for every day I'm still alive. I also have never been given IV saline in an emergency room, but I'm confused how others have? I thought if your not vomiting or have days of diarrhea then they just look at your pee to determine if you're dehydrated and my pee is always clear ( at least this is what they did to the guy in the bed near me, they just looked at the color of his pee). So I'm wondering what my argument for my regular doc ( who seems to be treating my pots anyway) as to why trying IV saline would be worth trying if he says it's no different than drinking water? I'm confused about this myself? And I only want to try it once . I'm not asking for a port or anything. Just knowing there IS something out there that helps me would make this h*** easier to bare, rather just a bunch of hypotheticals which might help me. Thanks!
  19. Iheartfrogs217

    General Anaesthetic

    Hi TCP, just wondering how everything went. I hope you are well!
  20. Iheartfrogs217


    I’m sorry I don’t have any answers, but I just wanted to reach out and say I’m in the same position. I’m a university student and can barely make it through classes let alone anything else. It is so hard to get through the day because of exhaustion and fear about what symptoms I’ll experience next. Stay strong and know you are not alone!!
  21. Iheartfrogs217

    IV Fluids?

    I would document your blood pressure before treatment and after treatment in an excel sheet and present it to your doctors. That way they will be able to see the trends you are talking about and they might be more convinced. You could also bring your bp machine in with you to your appointments. It seems to help if you can provide some sort of proof. I have been taking pictures of my symptoms (such as purple feet, red ears, rashes, etc.) and having that proof seems to help doctors take my symptoms more seriously. You could also mention the point that IV fluids are a very benign way of treating POTS symptoms. So if it helps and has very minimal risks, why not try it/prescribe it? I know how frustrating it can be when they don’t listen. Hang in there! I hope all goes well and they change their mind!
  22. Iheartfrogs217

    I found this to be very informative

    Thanks for sharing! You are correct in saying there is a lot of useful information!
  23. Yesterday
  24. You may want to search through old posts and you will find lots of examples. Someone else just posted a new thread about fainting while sitting or lying down. There are also many posts on waking up in the middle of the night with tachycardia.
  25. Hi all! Lately I have been randomly almost fainting while sitting and laying down. My pulse will suddenly become thready and fast. This has been happening almost everyday and is really scary! I’ve been seeing a lot of doctors and specialists but none of them seem to know what could be causing it. Has anyone else expirenced this before? If so, what do you do to feel better and do you have any doctor recommendations? Thanks in advance! I should also add that I’ve been recently diagnosed with Small Fiber Neuropathy. If you’ve been diagnosed with this too, I’d love to hear about your experience.
  26. blizzard2014

    Possible gastroperisis!

    I am some better. Only have eaten 1 can of clam chowder since Wednesday night. 300 calories. I am able to tolerate one cup of iced coffee and some iced tee as well. If I would have eaten more than that can of soup last night, I would have been in horrid pain again. I passed all the soup out in 12 hours. It came out this morning liquid. I will be seeing my doc this coming week and bring this up to see if I can get a gastric emptying study, and if that is all good, it has to be my gallstones acting up and time to remove the gallbladder.
  27. statesof

    Anyone located in Illinois?

    I'm in Illinois, there is also Dr. Janice Gilden in the Chicago area as well as Barboi. I believe Milwaukee, Wisconsin also has some POTS knowledgeable doctors. You can also check the physicians list here: https://www.dinet.org/physicians/
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