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Saline IV, hypoperfusion? ......

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by voner, Jun 28, 2012.

  1. voner

    voner Senior Member

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    Saline infusion post

    Want to relate this experience I just had with a saline infusion.

    To start off, here's some information. I'm like many others, I have not found a medical doctor who really has any experience or clue with POTS or dysautonomia, but I did get the doctor to order up a trial of weekly saline IVs.

    My symptoms are; POTS, Cold and numb feet, cold hands that get discolored, a flulike body ache that seems to force me into the prone position for much of the day, PEM, etc.. My initial symptoms started as myofascial pain syndrome with muscular trigger points that caused debilitating neuropathic pain and still do....

    I've had no testing like Tilt table, or blood-pressure test or norepinephrine levels, et cetera.

    The first saline IV I got was 1 L infusion. I had no discernible symptomatic relief. On the second IV, I got 2 L of saline. Half an hour after the IV, I have an appointment with my physical therapist who does osteopathic manipulations, and more importantly, dry needling of trigger points.

    You're not familiar with the dry needling of trigger points, trigger points are hard to describe but they're like the muscles that cramp up real tight and then the acupuncture needle goes in and hits a little hard nodular area and there's an explosion of pain but the trigger point releases and a couple of days later after some soreness wears off patients tend to find some relief.

    I remember standing in my physical therapists office and explaining to him that all of a sudden I felt that my musculature felt different in a positive manner. It was like me hard and ropey muscles have released a bit, a significant bit.

    He went and dry needled a few trigger points and the effect inside my body of the needle hitting the trigger point is usually an explosion of pain and I usually yelp, ow!! But this time when the needle hit the trigger point nodule, there was a release but very little pain associated with and certainly no explosion of pain. i have had my trigger points dry needled hundreds of times and the reaction is very predictable, and this was an extremely anomalous reaction, and in my experience of 15 years of having these symptoms, a rare case of something positive occurring in relieving my symptoms.

    My PT said that the muscular twitch response which occurs when the trigger point explodes, was no different than any other time he's dry needled me. He was perplexed but he kept saying that must have something to do with the nerve response because the pain levels were immensely different when the twitch response/explosion occurred.

    As far as being able to stand upright et cetera. I'd say that there was some relief, but it wasn't extraordinarily dramatic. But perhaps I was just paying more attention to the muscular/nerve system pain that had subsided quite because that pain from certain trigger points had been really debilitating for the last month and a half or two months.

    About 36 hours later, the trigger points, & hard, ropey muscles came back and the associated pain was in full force. I remember when I woke up at about the 36 hour later point, I had a headache which is unusual. 48 hours later I was back on the floor is usual and in quite a bit of pain from the trigger points.

    Soooo..... Any ideas on what this is telling me? (Besides the fact that he Saline IV had some effect on me )...... I was recently reading a thread on this forum about brain scans and fibromyalgia and CFS/ME and hypoperfusion... could this be in increase in the blood flow to the brain? And increased to bloodflow of the musculature?

    Anyone want to speculate?
     
    Xandoff and taniaaust1 like this.
  2. taniaaust1

    taniaaust1

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    Sth Australia
    All I can say is that that sounds completely fascinating and your the first person Ive ever heard of it having that kind of effect on. Pity a study cant be set up of this treatment on our symptoms.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    From my experience with an autonomic specialist, 2 l would be the absolute minimum to have an effect. He usually did 3 or 4. But the fact the you responded to 2 might indicate that you might respond even better to a larger quantity.

    Though this is temporary, it can often help symptoms.

    Best,
    Sushi
     
  4. voner

    voner Senior Member

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    Sushi,

    I will see if I can get 3 L next time.

    CBS sent me a very intriguing personal note on this, .....I'll see if I can get it posted to this thread.

    Did your autonomic specialists have ideas as to why it took so much saline to affect a change? Any idea on the underlying cause?
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Probably low blood volume, possibly problems with the systems that return blood to the head and heart. If you have lower blood volume and problems getting blood back "upstairs," your symptoms are likely to be worse.

    This is one reason pressure garments help a lot of patients--they help with blood pooling in the lower half of the body.

    The low blood volume could come from diabetes insipidus (not regular diabetes), and other causes. My previous diabetes insipidus seems to have mostly resolved and my present doc also thinks my blood volume has increased. I think there may be other factors that influence blood volume too--we need some experts to weigh in here!

    Best,
    Sushi
     
  6. voner

    voner Senior Member

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    Do you have any idea how your diabetes insipidus resolved? Pharmaceutical drugs? Exercise? Who knows?

    The note I got from CBS also implicated diabetes insipidus.
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    By treating some of the central issues of ME/CFS--not by trying to treat it directly.

    Sushi
     
  8. xks201

    xks201 Senior Member

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    You gotta remember that its not JUST low blood volume if you really have DI or partial DI. It's all the minerals like calcium magnesium ..and electrolytes like potassium and sodium being constantly secreted. Sure plasma electrolytes can look normal but obviously if you are peeing a lot a compensatory mechanism is occurring and extra electrolytes/minerals are spilling out of cells into the plasma and therefore you have mineral and electrolyte loss as well. Calcium can be low and cause fatigue from all the urination.

    CBS suggested I just measure my urine volume at home next to my input. At first I lied to a doc to get desmopressin because the output was so ridiculous until I got a fluid deprivation test done by an endo who said I definitely had DI.

    I also found out I probably have gluten intolerance. I imagine an allergic reaction in the gut could signal the body to piss a lot. So I guess there are things like that that could trigger partial DI....
     
    taniaaust1 likes this.
  9. voner

    voner Senior Member

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    Anyone know why it's called diabetes?

    Does the Desmopressin stop the electrolyte loss and or just increased the water retention? Or do they know?
     
  10. xks201

    xks201 Senior Member

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    The electrolyte loss happens by virtue of you peeing out the electrolytes. Taking in too much water on desmopressin will dilute the electrolytes though. It's called diabetes because the real diabetes was initially diagnosed by tasting the urine for sugar. Yes I said tasting. So the urine part is common in both diabetes and diabetes insipidus.

    There are a lot more factors than just DI that can produce fatigue though. But if you are wasting water you are wasting water...only way to know is to get the water depriv test.
     
  11. voner

    voner Senior Member

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    So have they ever checked on the effects of demospressin on hypoperfusion in the various parts the brain in ME/CFS?

    Or is the Brain so vital, but that's the last place that hypovolemia & Electrolyte loss affects?
     
  12. ramakentesh

    ramakentesh Senior Member

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    its impossible to speculate but profound improvement with Saline may suggest either absolute hypovolumia (as occurs in 70% of POTs patients from central or perhaps kidney dopamine activity) or regional hyperemia.
    There are varieties of POTS where - there is stomach pooling exclusively - there is pooling the extremities - there is leaking capillories due to abnormal endothelial function resuling in postural hypovolumia and all of these etiologies could improve with saline infusions.
    Also it should be noted that in most POTS there is reduced stroke volume from inadequate peripheral venous return. the bodies coping mechanism for low stroke volume is often parasympathetic withdrawal which can result in reductions in the effectivemess of cerebral autoregulation. In POTS this is the primary problem that causes dizziness in the face of often normal blood pressure.
    In general increased blood volume from saline should help all POTS patients. If saline works _ like it does for me _ volume expansion with either licorice or florinef might be worth pursuing.
     
    Xandoff likes this.
  13. ramakentesh

    ramakentesh Senior Member

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    A simplistic view of volume statis control. Sodium regulation effects volume status which is controlled by a complex set of balances - renin/aldosterone, kidney dopamine, peripheral and baroreceptor influences and central controls near the hypothalamus - any of these could be being effected in POTS.
     
  14. xks201

    xks201 Senior Member

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    Lately I'm not even convinced a water deprivation test is the best test. Blood volume in relation to ADH output was measured and found to be deficient in almost 2/3rds of CFS patients. Clinically they didn't have DI but they did have partial DI. And personally I passed one water deprivation test and failed another. To me it depends on how hydrated you are before you come in there...if you come in there fasting water and food like they tell you to then you probably won't have to pee much even if you do have DI. THat was my case. Yet I get so dehydrated that simple prescription drugs cause severe kidney and liver pain in me if I don't take desmpressin. That's how bad it gets. I also get extremely hot.
     
  15. voner

    voner Senior Member

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    So, It appears that for some people, desmopressin increases the blood volume without any other detrimental effects on the homeostasis system?

    Even if, as ramakentesh says, "sodium regulation effects volume status which is controlled by a complex set of balances........
     
  16. voner

    voner Senior Member

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    ramakentesh,

    Do you know what the mechanisms of action on the fluid in sodium balance system are for licorice root? Or did you just try it and it worked for you?
     
  17. ramakentesh

    ramakentesh Senior Member

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    Licorice root works via aldosterone effects. But it also has many other effects: MAOI, eNOS inhibition, etc.
     
  18. ramakentesh

    ramakentesh Senior Member

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    But yes I just tried it and it worked wonders for 5 years. I was back at work and running. ive become somewhat immune to its effects now and take mestinon and florinef now. I respond profoundly to saline infusions.
     

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