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Anyone with a diagnosed catecholamine disorder/dysautonomia?

Discussion in 'General Symptoms' started by Chriswolf, Feb 8, 2016.

  1. Chriswolf

    Chriswolf Senior Member

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    I'm wondering if anyone here has been diagnosed as having issues in this regard as I've been experiencing an increasing cluster of symptoms that hint at the problem for myself, although I'm in no position to self-diagnose.

    It would however be useful to pick the brains of somebody who does have such a problem so that I can see how many of my symptoms match with theirs.
     
  2. ryan31337

    ryan31337 Senior Member

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    Hi Chris,

    What are your symptoms? Curious because the thought has crossed my mind too with apparent hyperadrenergic POTS symptoms. I suspect I'd struggle to have a doctor consider it clinically relevant, much like other issues it seems to present mild/borderline dysfunction but probably not enough to be considered a problem in its own right.

    Ryan.
     
  3. Chriswolf

    Chriswolf Senior Member

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    During the warm weather, especially during the summer months my symptoms immediately begin to worsen. I do present quite a few typical POTS-type symptoms in general, such as dizziness/faint/lightheadedness and specifically blurry vision at times. During last summer it in fact got so bad that I really didn't have normal vision from about July until about late September/October. It was worse last summer during the hottest days than those symptoms have ever been in any of the years prior.

    I feel out of breath a lot of the time as well when my symptoms worsen, which is extremely annoying to have to explain to doctors because they instinctively want to attribute it to some kind of non-somatic/psychological point of origin when I know for a fact that it isn't.

    Another thing, and this is the big one that I'm very interested in knowing if anyone with diagnosed dysautonomia/POTS experiences, is the sensation as if one has a bad fever, I can't rightly say that it actually is a fever, but that's how I describe it based on the symptoms that it tends to encompass.

    At worst I feel strong symptoms of disorientation and sweating, my heartbeat is erratic, sometimes rapid, but nevertheless feels at the time like my heart is working way too hard. I feel short of breath and my vision is remarkably worsened.

    There have been times where I had to stop in the middle of the street and find a place to sit because I felt as if I was going to collapse which is something I've never had to deal with prior to the emergence of these symptoms.

    The reason why I believe it is likely some related to POTS is because warm weather supposedly exacerbates the problem and that's specifically when that cluster of symptoms reaches its absolute worst. If it isn't that, then it could possibly be something related to bacterial or viral illness, however I was rather shocked at how many of those symptoms I experienced, and the fact that they typically worsen in warm weather.

    Another strange symptom that seems to have developed last year was a sense of perpetual nasal congestion, I thought for the longest time that it may have been an allergic reaction, however antihistamines or corticosteroid sprays did not work, the only thing that reliably worked, albeit with consequences was oxymetazoline, which as I understand is a catecholamine receptor agonist.

    The nasal congestion persisted for weeks and months without stopping so I have a hard time believing I simply "had a cold" or allergies for that long, especially since allergy medication doesn't work.

    I know it is a long shot but people with catecholamine disorders tend to present that as a symptom as well, and strangely enough it does somewhat improve when I am exposed to cold things. I have temporarily improved such symptoms by exposing myself to cold water or taking a walk outside during the winter to reduce my dizziness so long as I haven't gotten past a certain point where it would be dangerous to go walking around for fear of fainting.

    I have suspected for some time now that perhaps that catecholamine activity, either at the receptor level or an insufficiency of dopamine to be converted, or converted dopamine itself is not getting where it should be.
     
    Last edited: Feb 10, 2016
  4. taniaaust1

    taniaaust1

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    hi, I have severe hyperadrenergic POTS and those symptoms you said in this quote above including feeling like I'm burning up at times, I have with it. I can get feverish like with it due to dehydration due to having the low blood volume (to the point that one time at hospital they said test showed my kidneys struggling due to dehydration). I have often had to go to hospital for a drip due to it. I'm on florinef and clonidine for this kind of POTS .. (the clonidine helps deal with the noradrenaline spikes with it).

    This kind of POTS due to lower amount of blood to the brain can cause disorientation.. and the autonomic issue can cause sweating or lack of sweating (I'm currently having more of an issue of lack of sweating). I can become blind when I'm close to a passout while at other times it blurs my vision. Dealing with POTS can be quite distressing at times and it worsens the hotter the weather is.
     
    Last edited: Feb 25, 2016
  5. Chriswolf

    Chriswolf Senior Member

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    Hello @taniaaust1

    Thank you for sharing your experience, it does help me gain a bit more perspective as to what I might be experiencing.

    I have in the past actually used propranolol in the and at times it did seem to help, however I'm honestly wondering if either I bounce between hyper and hypoadrenergic states. Unlike you I never actually experienced high body temperatures, I simply had feverish symptoms (feeling delirious, dizzy, sweating, physical weakness) only without an increase in body temperature, in fact I would find myself often to feel remarkably clammy to the touch, and sometimes sweating from very odd and specific parts of my body. Like you however I also do experience a terrible sensation of dehydration wherein my mouth, eyes, nose and skin can feel very poorly hydrated and dry as well as experiencing headaches and muscle cramps as well.

    As of the last year and a half anything that seems to act as an adrenergic receptor agonist seems to improve various symptoms. I experience sinus and breathing troubles over long periods of time and nothing ranging from antihistamines to nasal steroids helped. Those sinus troubles also worsened considerably when other symptoms such as fatigue and blurry vision worsened as well, so I do believe there is a connection to some degree.

    What further convinces me is the fact that only oxymetazoline seemed to help, which leads me to believe that I may have catecholamine issues, at-present I think they might be on the low side, whether it is downstream catecholamines such as epinephrine and adrenaline or upstream in the form of dopamine - I couldn't really say. However I've been having terrible fatigue and memory issues which have worsened to a degree previously not experienced in previous years.

    I'm going to try phenylalanine soon and I will report back if it improves any of my symptoms for anyone interested, I have tried tyrosine and while it did help with fatigue associated cognition and thermogenicity, it did not improve overall fatigue symptoms as much as I would have liked.

    Apparently some other people have had better luck with phenylalanine by comparison, so I'm interested to see if it helps my case at all.
     
    Last edited: Mar 4, 2016
  6. taniaaust1

    taniaaust1

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    I suspect in the past I may of been bouncing between hyper and hypo with this. I had a period with a couple of crazy incidences where I should of had a massive adrenaline rush but felt nothing at all eg back when I was still driving, I missed seeing a tram coming up the road towards me (my ME brain thought it was a building) and I then later turned right in front in front of it causing him to hit the horn.. it very narrowly missed hitting my car. I actually saw it when it was too late and floored accelarator to get out of the way or I would of been hit. I thought it would hit me but felt no adrenaline rush at all that day..

    day before I had another incident where I should of got massive rush too.. I'd walked into a big spiders web and got it right across my face which usually would of really freaked me out but that day too I got no feeling at all or rush at that. Anyway, these things weren't the normal for me at all but make me think there was something very wrong with my ability to get adrenaline rush for a time..
     
  7. lnester7

    lnester7 Seven

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    .
    Electrophisiologyst is the type of doctor you will need. But here is how to check yourself.

    I was diagnosed but I wasn;t your tipical Tilt table test fail patient. But my dysautonomia is very marked in other areas. I didn't pass out till years in. I am now on a combo of florinef+midodrine+propanalol (was a journey to find the right combo) and I am a very active ME patient.

    Here is what I did, I invested in a heart rate monitor, I took pictures when the readings were crazy, Of course the DR will tell you those things fail (so I invested in a good medical grade one) and documented my Blood pressure and HR doing tilt table test at all times of the day, when crash when feeling good, first thing in the morning.

    2) I kept a diary of food where visocontriction vs vasodilators food reactions. I do great on vassocontrictors and is a good way for you to try some herbs (I am no doctor so consult w yours before trying anything). I noticed vasodilators food made me much worse. Now for me it was tricky because I have immune issues so I also reacted badly to immune boosters Vs immune modulators food. Good vasoconstriction herb: Sample: Butcher's broom (Ruscus aculeatus).
    http://forums.phoenixrising.me/inde...room-ruscus-aculeatus-herbal-midodrine.14104/

    So while you test which you react good to, try not to mix the boosters (green tea, zync, others teas and the modulators ( Acai, .......

    So when you choose a herb to try make sure is only a type at a time(google that word with all 4 combination) example: lets say you want to try Peppermint:
    Pepppermint vassocontrictor, Peppermint Vassodilator, Pmint immune booster, peppermint immune modulator, peppermint immune suppressor.

    You can also google a list of vassocontrictors or Vassodilator.

    Also a good tell tell of your type of dysautonomia is if you over sweat Vs not sweating at all. High BP tendencies vs Low BP tendencies (I am a low BP tendency).

    Google talks of DR Grubb. He will teach you all you need to know. He just gave a talk here:
    http://www.chronicpainpartners.com/free-webinar-postural-orthostatic-tachycardia-syndrome-pots/
     
    Ninan and Chriswolf like this.
  8. Chriswolf

    Chriswolf Senior Member

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    Thank you for taking the time to respond, I appreciate the info and I will definitely follow up on the advice you've given, especially Dr. Grubb's talks on the subject.

    I think that I would not always fail a tilt table test myself as my condition fluctuates, however at my worst I would say there is a very good likelihood that I would.

    Getting a test during that specific period of time may be difficult as at my worst I've come very close to fainting and it has put me in some less than dignified situations in public when dealing with it.

    I actually had a heartrate monitor test back in 2014, the unit was issued to me from a hospital and after so many days I was required to return it. Nothing by their estimate was conclusive, however this is the same healthcare system that found definite signs of lymphocytic infiltration on a salivary gland biopsy and didn't diagnose me with sjogrens.

    As far as immunological reactions, I've been having absolutely terrible allergic reactions as of late. Approximately every 5-8 days I seem to build up to a real rip-snorter of an allergic response in which my skin feels like it isn't merely itching, but burning along with the sensation of being pricked with needles. The irritation is insane, it's not like a typical itch, you feel like you want to jump out of your skin to get away from it.

    Thankfully I do have atarax which helps a lot to curtail the allergic response, but it isn't without its side effects.

    I do sometimes respond very badly to food in general, there are certain foods I cannot eat and I simply avoid, but even ones that seem "okay" when I'm feeling decent are enough to set off my immune system in other circumstances.

    I can't seem to find any rhyme or reason except that eventually my body just can't keep up dealing with allergens and becomes overwhelmed.

    I actually cannot eat peppermint, I learned three years ago that it immediately gives me cold-like symptoms when I take it, I believe I have an allergy or some oversensitivity to it.

    During the beginning of my symptoms getting worse I used to sweat like crazy, then for about a year and a half I couldn't sweat at all, and now I'm back to sweating like crazy even when it is only marginally warm, like 10 degrees celsius.

    At that temperature if my blood pressure is low enough, I'll start sweating like a maniac along with other low BP symptoms such as orthostatic intolerance, shortness of breath, dizziness, weakness, etc.

    I recently tried some phenylalanine, which worked alright, it works about half as well as tyrosine does but doesn't give me joint pain.

    However I also tried some ephedrine today, and my god, I went from feeling like absolute trash to feeling halfway normal.

    My vision corrected itself as it was getting blurry, my muscles didn't feel sluggish and sore, I felt my cognition improve, I felt like my brain was working faster and my memory recall which has been worsening was sharper and more prompt. I also didn't feel like a sweating disgusting mess either even though it was above 10 degrees today, which speaks volumes about how greatly your body can change when one simple neurotransmitter is not working or present as it should be.

    IIRC ephedrine sort of acts like a pseudo catecholamine and it has reinforced my hypothesis that I do in fact have some kind of serious catecholamine issues.

    Even as little as 4mg of ephedrine made a world of difference, and even then it was on the high side of what I think I'll take again as I felt a little "too" energized.

    I wish I didn't have to rely on it to function, but until I can actually see a doctor, I suppose this is what I'll have to use to get through the days where I have to be active and attend to responsibilities.
     
    Ninan likes this.
  9. Ninan

    Ninan Senior Member

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    Have you looked in to salicylate intolerance or histamine intolerance? Peppermint is high sals.
     
  10. Chriswolf

    Chriswolf Senior Member

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    I don't take anything with peppermint anyhow, and yeah, I'm fairly convinced I have histamine issues.
     

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