Dysautonomia: Lightheaded & Faint Feeling When Upright

Discussion in 'Chronic Fatigue Syndrome Main Forum' started by hangininthere, Sep 23, 2017.

  1. hangininthere

    hangininthere Well-Known Member

    Pen2 and bct like this.
  2. jkennedy

    jkennedy Member

    I have orthostatic intolerance, but it's completely under control now. I add salt to all my drinking water (I use Celtic) and take potassium. Many people find electrolyte drinks helpful, but most of them have citrus flavorings, which make my teeth ache.

    I saw a cardiologist a couple of times because I was concerned with what I thought was an irregular heartbeat. It wasn't, but he did point out how low my blood pressure was. He said I should add more salt to my diet, especially since I eat very few processed foods, and the salt really does help me.
    hangininthere likes this.
  3. hangininthere

    hangininthere Well-Known Member

    Yes, salt good for it. Very happy it works for you, whew, that is wonderful. I have high blood pressure even with medicine, but still get plenty of salt and potassium.

    Chiropractic has helped me recently. Amazing unexpected improvement I'll explain below.

    So I'll add Chiropractic Adjustments to the list of helps.

    Ever since I got Chronic Fatigue Syndrome at age 18 1/2, I've had to lie down in between activities. Just felt like my head was too heavy when sitting up, and had to lay down. I have never sat up unless absolutely necessary such as to eat. But I could do normal activities in between laying down at home, such as driving my son to and from school, family gatherings, a full day at the beach or amusement park, shopping, etc. All while fatigued as all get out from the Chronic Fatigue Syndrome, but able to force myself up and about.

    Then at age 45, it got way worse and I went bedridden to this day, laid out flat, and can only force myself up once a week to bathe and do grocery shopping in a wheelchair, so exhausted in every way. I live in my bed in living room and have to slightly recline on pillows even to eat in my bed and type on computer.

    My symptoms are that when standing in a checkout line at stores, for example, my chest feels tight like it's about to explode, and it feels like the blood drains from my head and I can't think straight and about to faint and have to sit down. I look wild-eyed and scary, trying to stay upright and fumbling around to pay the cashier.

    There have been times I couldn't even remember my name when standing at a checkout when they asked it for their/my computer records on a sale, such as the time I tried to go without wheelchair real quick in auto parts store to grab a new battery - or when endorsing a check, even when sitting in wheelchair.

    I also can't raise my arms, like for example, hanging a shower curtain, without chest tightening and feeling faint and having to stop and sit down.

    I had a partial improvement in the orthostatic intolerance when I started on high blood pressure medicine two years ago. I could force myself to sit in waiting rooms for a brief time without having to take my reclining wheelchair. Sometimes I still needed to lay down on a couch in the waiting room, but mostly could sit up while waiting. I still needed my wheelchair for shopping. But that was a nice unexpected improvement. I have to force myself with all my might, though, every move I make.

    Then two months ago, I went to two different chiropractors for a few months when my husband needed them, so I got some adjustments while there, too. The first doc didn't help me, I didn't like his methods anyway. The second doc got me up out of my wheelchair at the stores for about two months, after about ten adjustments, then my insurance wouldn't pay for any more than fifteen visits per year so that I can maintain the improvement, and the good effect is starting to go away.

    For that wonderful two months this summer, I could walk through the stores and stand in long lines at the checkout with nary a thought of feeling faint or tight chest, and also thinking clearly. It was amazing being on my feet again. I still had to come home and dive into bed for the week between shopping trips, though, because of the Chronic Fatigue Syndrome.

    So, I'm thinking another help for orthostatic intolerance could be Chiropractic.

    Patti
    Last edited: Sep 23, 2017
    Pen2 likes this.
  4. bct

    bct Well-Known Member

    Bump! Important information for many of us! This does not show up in the "new Posts Section for some bizarre reason, so am bumping it.

    Barry
  5. Pen2

    Pen2 Member

    So @bct , what does bump mean? I'm new here. @hangininthere , I also have high blood pressure with Orthostatic Hypotension. My doc still treats me with medication which usually helps me feel better unless I am crashed.
    The problem for me is my Bp goes even higher now and makes it difficult to lay down. I like the information you shared and also know a good Chiropractor. I'm going to try him.

    Thanks, I'm Pen2. Brand new to pro health forums...:)
    hangininthere likes this.
  6. hangininthere

    hangininthere Well-Known Member

    Hi Pen2. Welcome, and thanks for your input.

    Bump means you made a quick reply to put this thread at the top of the list again. Every time a reply is made, the thread goes to the top of the list. So some people just write 'bump' for short, like bumping it to the top again.

    There are two kinds of Orthostatic Intolerance - one is when your blood pressure rises too much upon standing, and the second type is when your blood pressure goes too low when standing up.

    There is a tilt-table medical test for it, which straps you to a special table that tilts you up and holds you there straight upright until you pass out, thus proving you have orthostatic intolerance. No way I'm having the tilt-table test, I think it would kill me from my chest getting tight and feeling like it will explode. Some people have died having that test.

    A simpler method is to stand for ten minutes and then measure your blood pressure to determine if it goes abnormally high or low. I don't have the patience or strength to just stand there for ten minutes to find out what my blood pressure does. But I think I'll take my little blood pressure wrist monitor with me to store and take it sometime when I'm standing in a long line, since my orthostatic intolerance is coming back very slightly so far, because my insurance amount of visits ran out for the year. I've read that it's worse when standing still, and is better when walking around, but I can't tell any difference when my orthostatic intolerance is severe, I tried it in store and no better when moving around.

    The first chiropractor I went to last year used a little thumper to thump my neck bones back into place, since the x-ray showed my neck was crooked. That doc didn't help one bit. He didn't give me all-over body adjustments like I like, which seem more thorough.

    Then the second chiropractor I went to a few months ago did the whole-body manual adjustments which I far prefer, also saying the problem was in my neck after taking x-rays.

    I told him that I was in a wheelchair because of the orthostatic intolerance. He manually turned by head every which way, jerking it and cracking it like all get out, along with pushing up and down my back (the cracking sound is just air escaping from between the bones). Much more thorough than a few thumps with a device. And lo and behold, voila, I'm up out of my wheelchair at the stores. Can't walk down the street to store or anything, though, because of my Chronic Fatigue Syndrome holding me down.

    Patti
    Last edited: Sep 27, 2017
    bct likes this.
  7. hangininthere

    hangininthere Well-Known Member

    Since the problem seems to stem from my neck being crooked, I'm wondering if the Vagus Nerve was slightly pinched off or impinged, and the chiropractor unpinched the nerve like they do, so it could do its job.

    An overactive Vagus Nerve can cause fainting. Could my vagus nerve be irritated from the crooked neck bones impinging on it?

    Here's an article about Vagus Nerve Disorder:

    http://www.md-health.com/Vagus-Nerve.html
    Last edited: Sep 27, 2017
  8. hangininthere

    hangininthere Well-Known Member

    Last edited: Nov 6, 2017
  9. Nanie46

    Nanie46 Moderator

    Patti,

    Regarding the study in the link above, I don't think the POTS was necessarily caused by the antibiotic treatment. I suspect that the treatment was not enough and the patients developed continuing and worsening symptoms.

    That happens a lot because the standard IDSA treatment guidelines are short term. They say you are cured if you had the standard 2-4 weeks of antibiotics. Then if you continue to have symptoms, they say you have "Post Treatment Lyme Disease Syndrome". The IDSA guidelines, by the way, are outdated and inadequate, but doctors still use them.

    ILADS has longer term guidelines and are the only guidelines currently on the National Guidelines Clearinghouse:

    https://www.guideline.gov/summaries/summary/49320


    Here are the ILADS guidelines from the ILADS site:

    http://www.ilads.org/lyme/treatment-guideline.php


    Many, many people who have had continuing symptoms and were treated longer by a Lyme literate MD, got better.

    Here are 2 interesting blogs written by a Lyme literate MD about POTS:

    http://lymemd.blogspot.com/2012/04/pots.html

    http://lymemd.blogspot.com/2015/10/lyme-pots-mast-cell-activation-syndrome.html
    bct likes this.
  10. hangininthere

    hangininthere Well-Known Member

    Yes, I thought of my misstatement when I was laying down and was gonna edit it and correct it, but then forgot. It said the POTS came on after the treatment, didn't say it was from the antibiotics in the treatment. I'll correct it now, thanks.

    Yes, I've learned here that it takes way more than a couple of weeks of antibiotics to treat Lyme effectively. More like a year or years of antibiotics, right?

    Will read the new links you've posted on the different threads later after I rest, thanks.

    Patti
    Nanie46 likes this.
  11. Nanie46

    Nanie46 Moderator

    Patti,

    As far as length of antibiotic treatment, it really depends on a lot of factors.

    If a Lyme infection is caught early, it can sometimes be eradicated with a few weeks or so of antibiotics.

    If the infection has spread throughout the body, it is much harder to treat.

    Once the infection is chronic, it may never be eradicated completely, even though symptoms can often be put into remission.

    Often co-infections are missed which can leave people sick even if Lyme is treated.

    It's interesting to read the ILADS guidelines and see how Lyme literate practitioners recommend treating Lyme.
  12. hangininthere

    hangininthere Well-Known Member

  13. hangininthere

    hangininthere Well-Known Member

    I recently started wearing a tight elastic stretchy fashion belt around my waist to keep the blood from draining all the way down to my legs from my head. It works! Have to tighten it as tight as possible.

    For example, a lot of times I go into kitchen to make something quick and easy to eat, but can't think straight about to faint and give up and go lie back down hungry.

    Since I got a stretchy belt to wear in kitchen and to stores, I have no problem with the blood draining and feeling faint, even when still CFS severely fatigued.

    Two different times since getting the belt I have forgotten to put it on and went to kitchen twice each incident, so hungry, unsuccessfully. Both times I finally remembered my belt (hubby reminded me to put it on when I was lying there whimpering in hunger). I put it on and voila, I fixed something quick to eat no problem.

    Patti
    bct likes this.