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Posts posted by Lemons2lemonade

  1. Dizzy, I totally understand where you are coming from. And I think that every one of us can share the sentiment of frustration with doctors telling us that it is psychological. Sometimes I feel like we all carry the memory of that battle for diagnosis so close at hand that we naturally become defensive when even attempting to entertain the idea.But I think that it is important to look at any avenue that may provide relief from symptoms because for me, that is the ultimate goal. When i first began experiencing symptoms, "i have no control over this" was burned into my brain because i tried to control it and was unable to. To me, there does seem to be a quite prevalent psychological component to this as well via perceived stress. Things that seem stressful like driving, going out of the house, being in large groups of people etc. bring on symptoms. What i have found, and i know that i am only one person, is that ignoring my symptoms, downplaying them, and continuing on with my life has not only improved my quality of life, but also reduced my symptoms dramatically. That being said, i also recognize that i had little control over this until i was medicated, and that being medicated enabled me to have more control. I think that this gap can be one of the toughest to cross with this disease--the gap between what medication can do for us and what we have to do for ourselves. Ultimately, i am not seeking a PTSD diagnosis, or hoping that anyone else here will. Instead, i am offering an idea, that perhaps the mechanism of PTSD and Dysautonomia may share some similar physiological qualities. And if a simple memory can cause such known and well documented physiological symptoms in individuals, what are the implications of this for people experiencing Dysautonomia? In people with PTSD it is their memory (as far as science knows this far) that is capable of triggering things like fast heart rates etc. So if it is doing it to them, what says that it isn't also our minds doing it to us? I am sure that if we looked at the physiology of PTSD patients we may find physiological changes. Here are some of the physiological findings of those with PTSD:



    Moreover, those with PTSD show dysregulation in many of the same areas that those with POTS do http://books.google....%20ptsd&f=false "...hypothalamic-pituiatary-adrenal axis [hpa] axis) [is] known to be dysregulated in many individuals with PTSD"

    I also recognize that there is also a chicken and an egg component here. Is it stress that brings on Dysautomnomia or is it Dysautonomia that is causing stress? I just find it very interesting how similar the two are. And people with ptsd also feel like what they are experiencing is real.

    Here is an interesting article about stress in our youth and autonomic function: http://www.europeanneuropsychopharmacology.com/article/S0924-977X%2806%2900251-3/abstract

    This article does a good break down and also examines mitochonrial dysfunction in PTSD: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2500154/

  2. Symptoms of PTSD:

    • Flashback episodes, where the event seems to be happening again and again(que pots attacks)

    • Repeated upsetting memories of the event

    • Repeated nightmares of the event (que waking up terrified)

    • Strong, uncomfortable reactions to situations that remind you of the event (que restaurants and busy places

    • Emotional "numbing," or feeling as though you don't care about anything (we have talked on the forum about this before)

    • Feeling detached(que out of body feelings)

    • Being unable to remember important aspects of the trauma

    • Having a lack of interest in normal activities

    • Showing less of your moods

    • Avoiding places, people, or thoughts that remind you of the event(que hiding at home)

    • Feeling like you have no future

    • Difficulty concentrating( i think we all know what this feels like)

    • Startling easily ( i do this)

    • Having an exaggerated response to things that startle you (yeah, like feeling like you are going to pass out)

    • Feeling more aware (hypervigilance)

    • Feeling irritable or having outbursts of anger (que anger bursts)

    • Having trouble falling or staying asleep

    • Agitation or excitability (check)

    • Dizziness(check)

    • Fainting(check)

    • Feeling your heart beat in your chest (check)

    • Headache (check)

    So, if someone can have similar symptoms from PTSD what does that say about the psychology behind our illness?

  3. I don't know about y'al but when i have a POTS attack, it is the scariest thing i could ever possibly imagine. It literally feels like i am going to die. Moreover, i feel completely out of control. And it seemed after one happened, they continued to happen more and more frequently until i was medicated. Even then, i feel like i am standing on the edge of a cliff at all times, trying to hold my pysche and body back from a pots attack. I was watching "Through the Wormhole" the other day and was surprised to hear that Propanolol had been found to be used in great effect to treat patients with post traumatic stress syndrome due to its side effect of memory loss. I am wondering of the great successes i have heard on this forum about propanolol and its memory loss capabilities related to ptsd. Have we wired our brains into having more and more pots/ncs attacks? Moreover, does this shine light on the relationship to our condition and its exacerbation by stress?


  4. ugh, i know what you mean about compression stockings, they definitely need to be more fashionable :) Some sports stores sell sports compression stalkings that are breathable and look a little more athletic like soccer socks. They are quite a bit cooler than the run of the mill ones. Also, if i am trying to wear a dress, i will sometimes switch to abdominal compression instead of leg compression and it helps quite a bit. I just went to JCpenney's and got a little corset/girdle that has a bunch of clasps on it and i made sure it was tight. I have to make sure if i am using abdominal compression though that it doesn't cover my lungs, though because that just makes breathing more difficult and doesn't help the symptoms much. Let me know if you find any other options! Also i am a tingler too. If i try to move around or lower the body part that is tingling below my waist it usually goes away.

  5. How I got my referral to mayo:

    Tests i had done at mayo ordered by Dr. Goodman:

    For lab: 24 hr urine sodium Bloodwork: -am cortisol - 25 hydroxy cut d2 d3 - alt - anca panel - angiotensin converting enzyme - antinuclear ab - ast - vit b 12 - calcium - cbc - copper - creatinine - electrolyte panel - extractable nuclear antigen antibody with ena panel - folate - ferretin - glutamic acid - gliadin antibodies - glucose - hemoglobin 1ac - lactate plasma - paraneoplastic autoantibody evaluation - pyruvic acid - sedimentation rate - tsh - tissue transglutaminase ab iga - tryptase - catecholamine fract ortho endo

    And for diagnostic tests: - emg (they also did something called an evoked potential test) - holter monitor - autonomic reflex screen ( sweat test, breathing exercises, and tilt table)

    Hope this helps!

  6. My chest gets all kinds of weird feelings: pain, the breathing through a straw feeling, sharp pains, dull pains, spasms etc. When you say inflamed do you mean like pushing on a blister and not feeling it? I get that feeling inside my lungs a lot along with the breathing through a straw feeling. Also, during those times its like I am breathing air in and out but that it is not diffusing into my lungs/bloodstream--like the pressure is off in the lung itself.

  7. I agree with this to a point. I think that biofeedback can help a little, almost as much as compression with myself. However, when I was not medicated or on the proper medications biofeedback could not control my symptoms. Now though, i still get pots like feelings and am able to use biofeedback to control them. The big things I say to myself are: this isn't going to kill you, its okay, it will pass soon etc. It helps a lot but I have to believe what i am saying otherwise it doesn't work. Also, I have recognized that the less I acknowledge pots symptoms, the easier I can navigate activities of daily living. Sometimes pushing through them creates the best results. Other times though, pushing makes it worse.

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