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Types of POTS

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by taniaaust1, Dec 28, 2010.

  1. taniaaust1

    taniaaust1

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  2. taniaaust1

    taniaaust1

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    Im confused where I fit on the types listed there.. either hyperadrenergic pots or combination pots?

    I get very high BP which im standing and very low BP (when Im laying or asleep but not at other times). There is no Nordic decent in my family nor others with it.. so in my own case it dont seem to be inherited. I can get so many of those hyperadrenergic POTS symptoms doing my POTS attacks.

    " Hypermobility Joint Syndrome is a major characteristic of Combination POTS." I dont have that issue.. (my daughter thou does but she dont have POTS).

    I personally think my hyperadrenergic/combination? POTS is caused purely by the CFS/ME.
     
  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I have high blood pressure with my POTS. The hyper form I guess. Who knows for sure.
     
  4. Carrigon

    Carrigon Senior Member

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    My blood pressure reads high in the doc's office and uber low at home. It's totally weird. When it's higher, I feel more normal. I'm not lightheaded when it's higher.
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    This article doesn't seem to mention (OK, I skimmed it!) under dysautonomia neuro-cardiac syncope--in other words dysautonomia without POTS. This is a fairly common form (the one I seem to have). My BP doesn't rise at all on standing--just drops. I have warning when I am in danger of fainting and have time to sit down. Others don't--they just wake up on the floor.

    Mine is lots better now, but I still need to watch it.

    Sushi
     
  6. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I wish I felt ok with my high bp. I feel exactly the same as people with low bp. It is the same. Blood not making it to the brain, heart, etc. Thankfully I have improved so much.
     
  7. lancelot

    lancelot Senior Member

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    Presently, I also have high BP(~140/100) with POTS after gaining about 30 pounds over the last 2 years. during the 1st year of this DD, i did not gain weight but lost 10 pounds with normal BP and POTS. It all felt the same to me.

    It seems like high-normal BP and POTS reads the same as those with low BP and POTS or NMH so i'm not so sure your BP number has much to do with our OI rather the drastic change in BP or not getting enough blood to our heads with upright position.
     
  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I agree, feels the same. Need blood in the head. I think that POTS does make it go up and down, but the feeling is the same, same symptoms.
     
  9. OurDayWillCome

    OurDayWillCome

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    Hyperadrenergic POTS is one type, but there is a very good paper on the different types at this link:

    http://knol.google.com/k/postural-tachycardia-syndrome#

    Many Drs don't do the appropriate tests to determine the type. Such a shame!

    As far as high BP, here is a bit of information:

    My bold.

    A paper on the mast cell connection here:

    http://hyper.ahajournals.org/cgi/content/short/45/3/385

    I am being evaluated now for Mast Cell activation. I am also XMRV + by serology.
     
  10. lancelot

    lancelot Senior Member

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    I'm also thinking that our OI in addition to being caused by POTS is also caused by cytokines and other immune chemicals being secreted because the OI(severe lightheadedness, brain fog, concentration problems, sickness, nausea, worsening fatigue, syncope in upright position) feels similar to a flu when you try to be in an upright position for any extended amount of time. when you are in the midst of a bad flu(not cold-big difference), all you want to do and can do is lie down due to OI, exhaustion, and sickness/nausea.

    It's quite strange how a flu is how i can best describe disabling ME/CFS yet most of us do not really consider the flu to be a serious illness since we all recover from it very quickly. a neverending flu which you never get well from is how i'd best describe ME/CFS to someone who doesn't have it.
     
  11. kerrilyn

    kerrilyn Senior Member

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    Based on that link, I'd say I'm PD POTS. My BP doesn't rise. The systolic stays the same, the diastolic bounces around trying to keep me upright and then eventually they both plummet together and I'll faint. I think that puts me in the NMH category too. I had a TTT at an autonomic lab (passed out) and was diagnosed with dysautonomia but never saw the report to see if anything more specific was mentioned. The doc advised more fluid/salt intake and prescribed Midodrine but I haven't been taking it.

    I know this all became much worse after a car accident (whiplash), but years before that I used to get horrible leg cramps from standing all day.

    As far as Hyperadrenergic POTS, I fit the info listed about the trauma and why it can happen and the symptoms but I think that would be true of any POTS patient. From a familial aspect, my father's mother spent 4 years in bed with a 'heart condition' (in her 40's), following a bout of shingles. Hearing that shocked me because by the time I knew her, she was strong and healthy and had more energy in her 70's-80's than I did and I was in my teens-20's. She lived into her 80's and the heart condition was never a problem again. Now I wonder, did she have something like POTS or mitral valve prolapse?

    Do you find it odd that POTS is now getting linked to Fibro in a lot of articles/sites (like that one) without mention of ME/CFS? I was diagnosed with Fibro, not CFS, but I fit CFS more. I've been virtually pain free for 6 months, until a couple days ago. I've met many others who had Fibro and they didn't seem anything like me, because they lacked the POTS aspect. OTOH, there are so many CFS patients with POTS.
     
  12. OurDayWillCome

    OurDayWillCome

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    Kerrilyn.... I had read through that site before, and had a couple of problems with the information there. One problem is that I do NOT have Fibro. I have very little pain, and it is not consistent. The other is that my POTS is not linked to trauma, but is genetic. It runs in my family. The first time I fainted, I was very young and playing on the school grounds with some friends.
     
  13. OurDayWillCome

    OurDayWillCome

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    Lancelot... you may be correct about the Immune stuff. Here are the symptoms of a Mast cell problem:

    Abdominal pain / Anaphylaxis
    Blood pressure changes & shock / Bone pain (mild to severe/debilitating)
    Chest pain / Cognitive difficulties/brain fog
    Degenerative disc disease / Diarrhea
    Dizziness/vertigo/lightheadedness / Faintness
    Fatigue / Flushing
    Gastroesophageal reflux / Hematological abnormalities
    Hives & other rashes / Inflammation of the esophagus
    Intestinal cramping and bloating / Itching, with and without rashes
    Irritable bowel / Liver, spleen and other organ involvement
    Malabsorption / Migraine headaches
    Muscle pain / Nausea
    Osteoporosis/Osteopenia / Peripheral neuropathy and paresthesias
    Rapid heart rate / Vomiting

    http://www.tmsforacure.org/mastocytosis.shtml

    Such an overlap of symptoms!

    ****my columns didn't work. added some "/".
     
  14. WillowJ

    WillowJ Senior Member

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    This is called "white coat syndrome." It's normal. Some ppl just have high bp at the doctor's office because of the factors associated with being at (and for us, getting to) the clinic.

    Keep a record of your bp at home and bring it and your bp cuff to the doctor (they will want to check that your cuff does not give a funny reading). That way your doctor will know what your bp usually is.
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I also have "white coat syndrome," partly because of all the effort I have to make to get to the doctor's and that usually involves drinking coffee. I got a BP machine that you pump it up but it gives a digital reading and has a memory for about 30 readings. I used to just take it to the doc (he also had POTS) and let him scroll through it and he also checked with his own BP cuff. That worked.

    Sushi
     
  16. Mya Symons

    Mya Symons Mya Symons

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    This is really interesting. When I was in the hospital they were taking my pulse and my blood pressure constantly. My pulse was extremely high, especially right after I got back from going the bathroom. My blood pressure was usually normal, but sometimes the bottom number was a little high. When I went to sleep at night, my pulse dropped so far that the machines would go off and the nurses were constantly in there waking me up. After I got out, I went to a different doctor. The same thing happened--my pulse was extremely high. He took it a few times and asked me to sit up and lay down. Maybe I found the right doctor. When I was pregnant I had the same problems. When I stood up, I felt like I would black out. I actually did pass out once.

    The symptoms for the second type of POTS seem to fit (Hyperadrenergic POTS). When I get up in the morning, my vision is blurry. I never feel like I am the right temperature. I have all over body twitches, especially when I lay down at night and try to sleep. When I lay in bed at night, I feel pressure in my chest. I am often nauseas. My face is always red, etc., etc. I don't remember anyone in my family, however, having the same problems. My uncle has a mitral valve defect. I wonder if that is something that runs in the family.

    How would you get a doctor to believe you and test you for this? I would like to try the medicines they mention. Maybe mentioning my uncle's condition would help.
    I wonder if a person was taking a norepinephrine reuptake inhibitor, would it make POTS worse?

    Regarding this statement from the article: "While the cause of the PD form of POTS is unknown, there is increasing evidence that in some patients it is an autoimmune disorder (the body’s own immune system making antibodies against the autonomic nerves)." Is there a blood test available to see if a person has these antibodies?
     
  17. taniaaust1

    taniaaust1

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    Whoa!!!.. that info for me was quite scary to here seeing my uncle has a life threating disorder of the mast-cells (which in rare cases can be inherited and his own daughter is sick with the same symptoms as me but remains undiagnosed and thinks she's got the mast cell disorder he has). Systemic mastocytosis (my uncle has had to be resusitated a few times due to this, every day possibly could be his last). My uncle didnt develop the condition till he was older then I are right now.

    Ive been tested for systemic mastocytosis (as that is what my uncle thought I had too) but didnt come out as being positive to it (I dont know if the test for that is 100% reliable thou, if I get another mastocytosis like rash, I will be rushing in to try to get someone to biopsy it).

    OurDayWillCome.. how are you being tested for mast cell disorders? what tests exactly?
     
  18. OurDayWillCome

    OurDayWillCome

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    Myra... I looked up a POTS researcher/clinician for a diagnosis. It is not easy to find someone at times. If you have a teaching hospital near, then you could call and ask if anyone does the testing for autonomic disfunction. If not, then you just have to travel.

    Tania...I am fortunate, or unfortunate, depending on how one looks at it. My Tryptase level was tested and found to be high. Tryptase is a good indicator of Mast Cell load, and Systemic Masto.

    Do be aware, however, that a person can have Mast Activation Disorder without having an elevated Tryptase level. Time of testing can be essential in this case, and Tryptase levels should be tested about 2 hours after an attack begins. Also be aware that not everyone had skin problems, though about 80% do. I don't.

    There is a good forum dedicated to Mast Cell Disorders here: http://mastcelldisorders.wallack.us/yabb/YaBB.pl
    I can answer some questions but am still learning myself and don't want to say something that is inaccurate.

    How were you tested? With your family history, I hope it was thorough.
     

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