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OI symptoms and treatment

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by madietodd, Sep 11, 2013.

  1. madietodd

    madietodd Senior Member

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    SOC has started a great conversation here about how common and how hidden OI is. I'd like a place for us to share our symptoms and what we do about them. I'm hoping for lots of trial and -error and -success stories.

    I tried a low dose of florinef, which just made me tired. I'm waiting for that to get out of my system completely, and then I'm going to take my blood pressure and pulse throughout the day to see if I still have the erratic pattern I noticed a year ago.

    I have always had to force myself to drink - partly because I pee it right out. A little salt in the water seems to 'hold' it, and I feel better when I drink more. I'll be testing electrolytes when they arrive, but the quantity will be tricky because I drink pau d'arco and cat's claw teas for immune support. Does anybody know if I can add the electrolytes to the tea?

    All I'm doing right now is salting my food to taste (so, heavily), drinking 6-8 cups of fluids, and drinking some of that as water when I get up to feed the cat, and then I go back to bed for 20 minutes. This is helping a little with dizziness, spacey-brains, and the amount I can do before the couch looks delicious. Caffeine sometimes helps, sometimes does nothing.
  2. Mij

    Mij Senior Member

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    One thing I notice is that in the summer months I wear my snug nylon/spandex yoga pants shopping and they feel similar to wearing compression stockings. I can stand longer in line ups because it prevents the blood from pooling to my feet. I don't think I could wear compression stockings because I over heat very easily and they would make me feel claustrophobic.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Considered vasopressin which come in a nasal spray. Vasopressin helps the kidneys to retain fluid, so reduces how often we pee. This sounds great for me cause I'm sick of running to the loo all the time. Also has some vasoconstriction effects which can help pots/oi. Time will tell as I have ordered some afte I hearing a posifive story about a mates cfs daughter who used it successfully.

    Cheers
  4. madietodd

    madietodd Senior Member

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    Has anybody tried abdominal compression?
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, it works for me but has to be really tight--think hooks and eyes or zippers. I also add compression knee socks.

    Also, in the a.m. when you feed the cat, add electrolytes to the water, drink more of it (750 ml recommended) and stay in bed for longer--45 min to an hour to get the re-hydration effect.

    Also, do you want to treat symptoms, causes or both? It is much easier to treat symptoms and some drugs will help you there, but you also want to get after the source of the problem.

    Sushi
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  6. madietodd

    madietodd Senior Member

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    Sushi, what do you know about causes? I'm not finding information that's useful towards a cure; it all looks like symptom management to me.

    In which case plan A, to measure blood pressure through the day and then to measure it again after adding electrolytes and/or salt, sounds like a good place to start.

    The big hole in my plan is that I hate the BP cuff process, so every day I forget....

    I will try your morning protocol, thanks.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Unfortunately there are many causes for dysautonomia and not all of them are known. Treating viruses and bacterial infections has helped many here. Treating the gut, reducing heavy metals and methylation have helped others. It seems that many of the possible causes for ME/CFS in the first place also can cause dysautonomia.

    HPA axis dysfunction is often involved but that is also a "downstream" event. My OI has gotten better with treatment but I don't know which treatments made the difference.

    Do you have a manual pump-up BP cuff or an automatic "strangle the arm" type? I do better with a manual pump-up one with a digital read. Less of the python on the arm sensation. :eek:

    Sushi
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  8. Sparrowhawk

    Sparrowhawk Senior Member

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    I have found limiting my showers to shorter and colder made a big difference. It's a bummer because I really miss my showers, but I get in and out of there before I get too much of a flush response. By then the cool air and evaporation once the shower is off actually helps.

    1 g salt at least during the day also seems to help.

    Drinking a full glass of cool water first thing in the morning and lying in for at least 15-30min also helps me.

    I have found that my sitting at the desk pulse will drop almost 10 pts from low 90's to the low 80's or even high 70's after I drink water. Not sure if it is a blood volume thing but assume so.

    Hoping it's ok to repost this great reference link here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888469/
    Preventing and treating orthostatic hypotension: As easy as A, B, C


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  9. Sparrowhawk

    Sparrowhawk Senior Member

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    Thanks Sushi for the above and great to hear your OI is decreasing. I know you said:

    But could you perhaps list the things you have done, just so folks can try and see if the combo works for them as well?

    If folks have BP monitor suggestions that they find most accurate I'd love to hear them as part of this thread. Mine is LifeSource UA-767 Plus, recommended by Stanford Cardiac for home use, but I've used it back to back with the BP ones at the hospital and it can be off by 10mmHg or more from those "professional" monitors (which I was told are calibrated and corrected as needed for accuracy) which is a ton when you are talking about OI.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My HR monitor is spot-on with the doc's. I have an old Sigma with a chest strap. Polar seems to be accurate too but it is important to find one that allows you to change the batteries in both the watch and chest strap yourself--otherwise back to the factory and lots of $$.

    Re: treatments I have done--so many! Let's see: heavy metal detox, methylation, toxin detox, IV hydrogen peroxide, drug treatment for dysautonomia (only worked while taking them), treating the immune system, LDN, GcMAF, Nexavir, gut treatment, now treating Bartonella.

    Try all that on! :cool:

    Sushi
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  11. Sparrowhawk

    Sparrowhawk Senior Member

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    I use the finger-tip O2 and HR monitor for spot checks, but the full blood pressure cuff for the BP. The latter is the one I want to be sure is accurate. Often I'm not sure if what I am experiencing is OI, or hypoglycemia, so I have to do BP /HR and blood glucose at the same time. Even then I can be dizzy for no reason -- so just blame the viruses or whatever.

    Give me a year or so and I'll try to tick a few of those great options off the list, Sushi! Thanks.
  12. madietodd

    madietodd Senior Member

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    I've got a digital/automatic cuff one from CVS.

    I hate getting the stupid thing on, I hate figuring out how to prop up my arm. Then I hate worrying about what the reading will be. Finally, I hate not knowing if it's accurate.

    Why is everything about this illness so complicated and uncertain?
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My morning bp went from supine at 116/68 to 121/87 standing and got a head spin, had a 500ml electrolyte drink and 5 mins later it was 141/87 and a slight drop in HR. I think i function better at 140-150/- seems to leave some room for when it may drop and my brain perfusion isnt compromised like it would be if my bp was 120/-, i think when upright for long periods of time is when it drops and if it is less then 120/- i feel like crap. being a big guy i just cant tolerate a bp <120. pre cfs my bp was always 130s/-. SO many docs would see my bp as normal i guess but not normal for me and probably lower at times when i start to fade.
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  14. madietodd

    madietodd Senior Member

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    Heaps, I'll be curious to hear if the electrolytes help with the peeing issues as well as with the BP. You haven't started the vasopressin yet, have you?
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Still peeing like a racehorse so hasn't helped me there. Just feel better. Just ordered vasopressin but wont get it for a couple of weeks.
    Do the electrlyte drinks etc do the effects of them where off over time like in months as the body senses the extra so increases its ability to get rid of the extra fluid, sodium etc
  16. SOC

    SOC Moderator and Senior Member

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    I've got an Omron one like this. Had it for years and it's been very reliable. It hasn't always matched the one at the clinic, but I was told (quietly) that the nurses taking BP don't always do it correctly/well. I've gotten crazy readings from the fancy equipment at the clinic, like 165/50, when my home BP cuff was reading 120/85. And that happens over and over. Their readings are all over the place and often absurd. Doc believes mine more than the clinic's. ;)

    Taking my BP and HR in the morning is now just part of my morning routine. I forced myself to do it every day for a while and now it's no big deal. I have a folding bed tray next to the bed that I set over my lap while I'm chugging my morning fluids (600-750ml), taking my morning meds (thyroid, Florinef, verapamil), and waiting for BP and HR to settle (about 45 mins). I usually listen to a book and/or read the news while I wait.

    I rest my arm on the tray, and fasten the cuff loosely over my elbow and then shove it up my arm to the right position. It took a few trials to know how tight to fasten it lower down so that it was right when it was in position, but I sorted it out in a day or two.

    I don't worry about the reading. ;) I wait a few minutes for my BP and HR to settle after battling the cuff, then I don't watch it while it does its thing. I relax and listen to the book. I record the data in my ipod (I use the free iBP app) and get on with life. I don't know about other people, but my BP varies a lot from day to day no matter how I try to keep things consistent. I look at the trends, not the individual days, for the most part. That's a trick my doctor told me -- they worry about changes and averages a lot more than individual readings.

    The things I do pay attention to immediately are pulse pressure (systolic - diastolic) and heart rate. If my PP is too low, which for me is under about 35, I know I need to increase my fluids that day. If my resting HR is increasing, I know something is going south and I rest more that day.

    The whole ritual is a pain is the ass, but I feel so much better when I do it I've become resigned to the thing -- just another bunch of daily "chores" I have to do.
  17. SOC

    SOC Moderator and Senior Member

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    I've been taking electrolytes for more than a year without the effect wearing off. As I increase the amount of electrolyte fluids I take, I feel better.

    ATM, it looks like I need about 3.5L or more to keep my PP in my best range. I still have to pee way too much. When I see Dr R and the cardiologist at the beginning of next month, I'm going to ask if more Florinef would allow me to drink (and pee) less.
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  18. madietodd

    madietodd Senior Member

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    You make it sound so easy :)!
  19. madietodd

    madietodd Senior Member

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    SOC do you know if the electrolytes can be added to herbal tea? I drink cat's claw and pau d'arco for immune support, and that + 2 liters of electrolytes would drown me.
  20. SOC

    SOC Moderator and Senior Member

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    I can't think of any reason why not. It's just calcium, potassium, etc -- stuff that might be in your water anyway.

    ETA: Once you get used to chugging 600-750 mls before bed and in the morning, you've got the extra fluid if you drink normally during the day. :)

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