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Has Anyone Cured Themselves of This?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by xks201, Jun 6, 2012.

  1. xks201

    xks201 Senior Member

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    Mine is particularly bad unless I take low dose klonopin and one pill of florinef. Just florinef without the klonopin has a tendency to give me chest pain, which is not good. Also I need to add salt intake to the daily dose of florinef. Mine is orthostatic hypertension. Thank you in advance for your input.

    There seems to be two primary variations of this (correct me if I'm wrong) - one involves an imbalance in adrenaline/noradrenaline receptors or amount of adrenaline/noradrenaline and the other possibility is low blood volume. But then I should add a third - electrolyte imbalance, which would be best treated with florinef if aldosterone is low.

    Which one of it do you guys have?

    The first treatment would involve either a beta blocker or norepinephrine reuptake inhibitor from my understanding of the scientific literature.

    The second, low blood volume, would involve adding possibly desmopressin or florinef.

    The third - an electrolyte imbalance, would I guess depending on if it was too much sodium or too little sodium involve a diuretic or florinef.

    This is the gist of what I am seeing. And of course there is just all out hypotension in orthostatic intolerance - low blood pressure - which I would assume florinef or cortisol replacement could remedy.

    I am just curious how many of you have what form of this. I figure if we can break down a % of us that have tried each treatment and correlate our symptoms - we can better ameliorate the symptoms of this horrible thing.

    For me personally - my systolic, diastolic, and pulse rate will raise dramatically upon sitting and standing up. Upon lying down immediately it would fall back to normal 120/80 with a 75 pulse rate.
    Standing or sitting up it could go as high as 160/120 with a 110 pulse rate in a matter of seconds.

    It is very hard for me to think that adrenaline can be secreted that quickly if that is the true cause, and somehow the adrenaline is detached from the receptor or the receptor is inactivated upon lying down in a matter of seconds. And with standing or sitting comes the dizziness.

    In trying desmopressin there was no change at all. Loading up with fluid made absolutely no difference, in fact it may have made it worse by diluting electrolytes even further. Florinef seems to help the most. But Florinef has a tendency to make my heart pound harder and raise BP/pulse. I have tried serotonin reputake inhibitors and really the best treatment for me seems to be a combination of low dose klonopin and one pill of florinef. A saline IV also made me feel better in the ER several times. This gets tricky though. I have a test showing my ADH was in the upper range. I know in hypoaldosteronism that ADH can rise consistently.

    Just curious on what your experiences on this are. There are a ton of threads stating different symptoms and whatnot but I think if we can get everyone in one thread to state their story and treatment attempts and possibly successes we will all immensely benefit in this sub forum.
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    OK, I am in the neurally mediated hypotension group (or that is the name they give to it). I have all 3 of your possibilites--problems with norepinephrine receptors and levels in the synapses, electrolyte imbalance and low blood volume. Most seem to be better now after treatment, but on a "bad day," OI rears its head along with other symptoms. Pressure garments help if I have to be standing.

    When I was taking drugs for OI (no longer do as it is better), strattera, a norepineprine reup inhibitor worked like a charm. Also electrolytes and licorice help and IV saline when I have had it. Florinef was horrible for me even though I had low BP (no POTS). My cortisol curve used to be inverse but last tested it was normal.

    Low doses of klonopin help me but mainly with excitotoxicity.

    My doc thinks my blood volume is up and that would be primarily from treating causes like viruses and bacterial infections.

    The short story!
    Sushi
     
  3. SOC

    SOC Senior Member

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    I think "cure" is a tricky word to use around here. A number of people have found effective treatments, but I don't think there are many "cures" without treating the underlying infections (or whatever).

    My daughter had intermittent problems with OI -- mostly sudden BP drops during class where she sat still a long time--probably due to low blood volume. Florinef plus K-Dur (to compensate for K loss) and compression socks made it manageable for her. Since she cleared up her HHV-6 infection with Valcyte, she has not had BP problems, but I'm not comfortable calling her cured of either her ME/CFS or the associated OI issues.
     
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  4. Sparrow

    Sparrow Senior Member

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    I have POTS - high heart rate upon standing. My blood pressure dropped dramatically upon becoming severely ill, but does not move enough (to my knowledge) when changing body position to count as NMH. I am pretty positive that low blood volume was involved, but I have not been officially tested and don't know what else might also be in the mix.

    Hugely increased water consumption, tons of salt throughout the day on everything I eat, and licorice root have helped my situation some (can now sit up for a little while, if I keep my legs crossed). I have not yet tried medications.
     
  5. uni

    uni

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    Hydrocortisone helped my orthostatic tolerance quite a bit, but I didn't stay on it due to possible adrenal suppression.

    SSRIs can also be helpful for dysautonomia/orthostatic intolerance. I think SNRIs are better than SSRIs in treating this.
     
  6. xchocoholic

    xchocoholic Senior Member

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    After reading dr hain's info on this, I don't think we can figure out what's causing everyone's oi.
    There are just too many individual possibilities.

    For instance, I have damage to my brain, lung scarring, celiac, kidney stones and a left bundle branch block.
    Did I leave out any organs ? Lol ..

    I'm drug intolerant and I have hashimoto's so I never tried florinef. Taking 1/2 of .125 mg of klonopin
    the other nite kept me loopy for a minimum of 24 hours.

    Saline iv's never affected my oi. My bp still dropped after 3 minutes and my heart still raced after 10 minutes.

    I'm not alone here tho. Many of us have similiar or worse scenarios. I'm not saying it's hopeless, not at all,
    just too complicated for a thread. Tc.. X
     
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  7. xks201

    xks201 Senior Member

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    Yeah I should clarify that I was not hoping to diagnose everyone with one particular case...more so just seeing what the most common categories were. Sorry to hear all that. That is bad sh*t, excuse my french.
     
  8. Allyson

    Allyson *****

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    I have OI I think.
    I find oestrogen pills help - said to boost blood volume
    so do liquorice root caps
    forinef did not help me and made me feel crap
    compression clothing - not just tight but all over the body and not just when standing - help to alleviate and prevent crashes; calf length stockings are no use, I wear normal tights with the feet cut out and a lycra singlet or t shirt
    swimming pools, spas - not too hot, warm baths and water aerobics,
    massage and massage chairs help too
    electrolyte drinks seem to help
    not sure about high salt diet but I crave salt.
    Have not tried vasoconstrictors but I occasionally take clonazepam to sleep and that always makes me feel better the next day - it is also said to boost blood volume.

    Oh, and staying horizontal definitely helps the most

    I think if i had a light weight, portable reclining chair on wheels I could do a whole lot more without crashing - eg drive to a gallery, lie down on the chair, wheel myself around and stay there for an hour or so with no ill effects.
    ditto for going to the cinema or out in a park.
    At home I recline as much as possible.
     
  9. taniaaust1

    taniaaust1

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    I seem to have all the different orthostatic issues with heart/BP found in ME/CFS
    POTS (increase of up to 67 beats when standing from laying)
    orthostatic hypertension (when standing) eg 170/136 (that can happen with one minute of standing or longer)
    orthostatic hypotension when laying 80/59
    NMH too when standing as thou my BP goes high when standing it also can suddenly majorly drop to low eg recently my diastolic dropped into the 40s when I was standing
    I also have narrowing of the pulse pressure at times eg difference of 7 (my monitor often errors so it may be lower).

    As far as the type of POTS go.. I have more then one kind. I have low blood volume POTS, I also have hyperadrenaline kind of POTS (my blood tests show excessively abnormal adrenaline levels).
    I wouldnt be surprised if I also have electrolite imbalances happening too (as Ive had some abnormal blood test results in the past of low sodium, low calicum)

    My POTS is about 30%-35% in control (with the following Im able to do double what I can do otherwise).. by lots of fluids, 3g salt per day (I also take salt pill), medical support stockings to the tops of my thighs, florenif, avoiding my more minor POTS triggers coming together at the same time,.. also avoiding being too warm, avoiding raising both arms at once, avoiding caffiene as that makes my POTS worst.

    I still have a long way to go thou to sort the POTS out... next stockings I trial are going to be to the waist ones of an even higher pressure (the ones I currently wear go over 30 pressure but I need to try 40).. I also need to be taking another med as well or something for it.

    Exercise (trying to get fitter) and also trying to build up my lower limb muscles...didnt at all improve my POTS. (I hear thou those often work for teens who have the non ME/CFS kind of POTS). Salt loading didnt help at all either before I went onto the Florenif.. and Ive noticed without salt loading the florenif dont work so well for me.

    I have a cane chair I take places with me due to the POTS. (I can be unconscious for up to 5mins if I have a POTS faint)

    The POTS is just one of the symptoms I get with my ME and I would never say my ME is cured until all the coexisting issues I have got due to the ME are cured as these are all just symptoms of the ME.

    I also wouldnt say my POTS is ever cured unless I get to the point in which I dont need to be doing all the POTS treatments Im doing now and not getting its symptoms (otherwise its just managing the condition rather then that its cured). I dont know how I'd cure it? as its directly related to me having ME and to cure it, I'd probably need to cure the ME.

    Its a case of What is causing the ME to cause the low blood volume and all the other things which is causing the POTS and autonomic dysfuctions.
     
  10. ramakentesh

    ramakentesh Senior Member

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    It is impossible to say if anyone has cured themselves since spontaneous fluctuations and even spontaneous remissions have been reported in the various forms of OI.
    SOme etiologies like simple aldosterone related low blood volume can be easily treated. Others like small fiber neuropathy, NET deficiency, Ang II mediated abnormalities, vagal withdrawal, idiopathic hypovolumia and other suggested etiologies may not readily cure themselves unless they have an autoimmune process which may subside spontaneously. Genetic defects would suggest the requirement for ongoing treatment.
     
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  11. ramakentesh

    ramakentesh Senior Member

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    The only ones I hear say that are patients and ME doctors.
     
  12. ramakentesh

    ramakentesh Senior Member

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    My POTS relapses and remits. I get bad flares every 3 years or so that seem to resolve whether I take medication or exercise or not.
     

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