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not sure what i have but do u get really nauseous and weak from OH

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by bagd, Oct 26, 2012.

  1. bagd

    bagd

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    In 2009 i had a "vaccine reaction" to seasonal flu vaccine. It was diagnosed as Gullian Barre Syndrome but i never had paralysis but sensory and weakness. I was really sick for 3 months than recovered. I have had some minor relapses but overall have done well. Six weeks ago I had a few episodes of vertigo waking me at 3am with nausea and vommiting. But i felt ok, not great. Went to the neurologist who wasn't too concerned. I am 47 and have been on oral contraceptives for decades because i have Polycystic Ovarian Syndrome. I decided to stop the OCP and have been spiraling downward. It started to really hit about two weeks after i stopped the pills. I developed really bad orthostatic hypotension and weakness. I get so nauseoaus it is especially bad in the mornings. Crippling weakness. I went to a cardiologist who started me on Florinef. i never had a tilt table test.

    Most of the doctors i have seen, and i have seen many in the past six weeks want me to go to Mayo Clinic in Rochester. I spoke to a CFS MD who really wants to get me on the tilt table but most of the doctors look puzzled and worried and make me think i have something really hard to diagnose and not CFR.

    so scared and worried.
  2. Nielk

    Nielk

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    Hi badg,
    Welcome to the forum.
    I'm not sure that I can help you with this but, just reading it a question popped up. Why did you decide to stop taking OCP? It seems that your symptoms have worsened since then and therefore the vertigo was not due to that.

    Vertigo could be simply due to a virus and once one has it, we are prone to have multiple hits.

    Good luck with your search and I'm sure that others who are much more knowledgeable will try to help you here.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    Welcome to the forum, though the fact that you are here, means you are sick and very sorry about that.

    Of course it is very hard for any of us to guess what is going on for you, but for those who know they have ME/CFS, most have found the Mayo clinic a huge waste of money and energy.

    Tilt Table tests can give a lot of useful information if they are done to test autonomic function, not just cardiac function. But they are absolutely NO FUN! :confused: I have had one and my doctor learned a lot of helpful things (which he shared with me) but the test took a good bit of recovery.

    How is the Florinef going for you? Do test your potassium regularly as this made often causes a dangerous drop in potassium.

    If you spend some time here reading and interacting with others, maybe you can get more of an idea of what is happening.

    Wishing you the best,
    Sushi
  4. bagd

    bagd

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    i stopped the ocp because i am 47 and thought i might be in menapause. i wish i had stayed on it. I am weak, and headachy and have orthostatic hypotension. this really escalated two weeks after i discontinued the ocp. i do want to try and figure out what i have. I would like to have the tilt table testing but i am so worried that i will have to stop the florinef and i think it is helping. I felt better with the ocp, they do plasma expansion without the electrolyte worries, and i am so tempted to go back on. i think i had this going on for a while and it has slowly gotten worse or i had changes in my diet that affected my blood pressure.

    i keep hearing from all my doctors that mayo is the place to figure out what i have. i know they are not into the chronic fatigue stuff.....i think this is all from the vaccine reaction and i have more of an autoimmune disease than a viral disease and would better with Multiple Sclerosis meds than the antivirals.....

    Just wondering if my Orthostasis was causing all the morning nausea....i feel like i did when i was pregnant-- but worse.

    so depressed!!!!
    and very frustrated with medical community.

    can i do tilt table with florinef?
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Have you investigated Hormone Replacement therapy instead of ocp? You might get good results. Any knowledgeable doctor can order the testing.

    As far as a Tilt Table while taking Florinef--it would depend on the doc and what they are looking for. If they are suspecting underlying autonomic dysfunction, they would probably ask you to stop it. If they want to find out if Florinef is doing its job, they might have you continue it.

    Often your first TTT will be looking for your response without medication.

    Best wishes,
    Sushi
  6. ahimsa

    ahimsa Senior Member

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    bagd, welcome to the forums. I'm so sorry that you're sick, and completely understand the depression/frustration with doctors, but I'm glad you found this forum since there is so much good information here.

    I can't know for sure what is causing your nausea but it's certainly possible that it's due to dropping blood pressure. I have orthostatic intolerance (Neurally Mediated Hypotension is one of the many names for the type that I have) and nausea is one of my worst symptoms. I hate nausea. It's much easier for me to deal with pain or exhaustion than the nausea.

    I've had two different tilt table tests, the first one for my initial diagnosis (1995), the second one to support my claim for disability benefits (2003), and both had similar results. My blood pressure plummeted to something unmeasurable after 20-30 minutes. The first time I passed out briefly. But the second time the cardiologist was prepared (the same doctor did both tests) so he put the tilt table flat immediately and I didn't black out. It made the aftermath of the test a lot more bearable.

    I don't know for sure but I think most doctors would recommend that you not be on any meds that would interfere with the results. If you had one test without meds already, and they were trying to compare what happened with and without meds, then some doctors might do a test while you were on Florinef to see how it made a difference.

    I think the best reason to do these types of tests is for medical evidence to support a disability claim. As others have said (and I completely agree!) this is not a fun test to take.

    I was completely ignorant the first time around. I had no idea how crappy I was going to feel during and after the test. The second time around I knew what was coming. It was like having the sword of Damocles over my head, just dreading that horrible feeling that was coming (it's amazing how horrible it can feel right before you faint!). But I really needed the test results as support for my disability claim (because of US ERISA disability laws - use google to find out how horrible these laws are, I'm not up to describing it right now....)

    Here's a link to another forum thread that talks more about the tilt table test:

    http://forums.phoenixrising.me/index.php?threads/tilt-table-test-which-degree-angle.19230/
  7. bagd

    bagd

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    so depressed. i can't believe six weeks ago i was feeling pretty normal and now i am a weak, confused mess. i feel like i have gotten a really poor work up. the kidney doctor didn't even check renin/ aldosterone levels. i was started on florinef without a tilt table. now i have to stop florinef, which i think is helping, and i have only taken for six days...and i have been so sick for six weeks...mornings are the worst. i get so nauseous, can barely move have to drink three liters of fluids...get a bit better in the afternoons. my mornings have been better on florinef, not great but better....

    thought mayo would be able to do everything the same week and at least give me a diagnosis. i'm so afraid of what the diagnosis will be....
  8. nanonug

    nanonug Senior Member

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    All these symptoms are consistent with mast cell activation disorder. Have a look at this post and see if you identify with some of them: ME/CFS is a mast cell disorder (hypothesis).

    Let me know if you have any questions.

    Good luck!
  9. bagd

    bagd

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    anyone have information about testing for autonomic dysfunction?
  10. Crux

    Crux Senior Member

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    Hi bagd;

    Some of your symptoms seem like those of low cortisol; nausea and vomiting, with extreme weakness, especially.

    Do you have a history, or recent history of low blood pressure? Along with awakening at 3 am with nausea,and vomiting, do you also have a strong pain in the upper stomach area ? Some people will have pain in the back, near kidney/adrenal area.

    I can see why florinef is helping, because, you may not be retaining sodium.

    I believe an endocrinologist would be a good doctor to see, because of these symptoms. They could first test morning cortisol and ACTH. They could check electrolytes.

    I wonder what other symptoms you have. Have you developed an overall tanning, not from the sun?

    Even if you haven't developed the tanning, high ACTH, and high potassium that people with primary Addison's disease usually develop, many of the other symptoms can happen with secondary Addison's, pituitary origin.

    People with secondary Addison's can present with low sodium, normal potassium, and low ACTH. ( ACTH is a pituitary hormone.)

    Vertigo may be a neurological symptom from B12 deficiency. Sometimes, vertigo can cause nausea and vomiting.

    I don't know if the docs have checked these hormones, and B12, but I strongly recommend them for you. ( your symptoms are similar to mine.)
  11. Valentijn

    Valentijn Activity Level: 3

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    If you don't have post-exertional malaise (getting very sick the day following exertion), it probably isn't ME/CFS. If you think you have ME/CFS, stay the hell away from the Mayo clinic. They're still in the dark ages and will probably try to talk you into committing yourself to their psychiatric ward after they rule out "real" diseases.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    But first they will tell you to use and exercise bike for a half hour a day!

    Sushi
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    What sort of autonomic dysfunction testing are you interested in? The usual it a Tilt Table Test done with about 5 special elements to check for specific autonomic dysfunctions. You can read here (http://potsplace.com/) in the left hand menu under "Detection." Although this is specifically talking about POTS, the tests mentioned are used for other types of dysautonomia also.

    Have you had your hormones tested? Seems like you might respond well to bioidentical hormone replacement since your symptoms started after stopping hormones.

    Best wishes,
    Sushi
  14. bagd

    bagd

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    mornings are hell. i wake u p and start drinking and then i try and eat. so nauseas. and shakey. i wake up two to three times a night and pee forever....

    i think my neurologist thinks i have a neurodegenerative disease. yes i do have post exertion fatigue. my hormones and acth stim test are all normal. everything lab wise has come back normal. they want to do tilt test to get an idea how off my autonomic system is.

    i have two young kids that i can't care for a wonderful husband who has to work since i can't anymore and a mortgage that needs two people to pay. i do have a disability policy so i guess it will kick in.....not sure if it will be enough

    i think i am dying....
  15. bagd

    bagd

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    ahimsa you mentioned nausea but not many people do....i think my blood pressure is low but not as low as it was and still getting bad am nausea....confused
  16. Crux

    Crux Senior Member

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    I take salt tablets when I'm nauseous and my blood pressure drops.
    The sodium raises my blood pressure. The chloride helps my nausea.
    The nausea may be from low stomach acid. Chloride is used by the body to make HCL.
    I take 2 salt tablets, ( 2000 mgs. of sodium).
    I take them with a smaller amount of water, because I don't want to dilute it too much.
  17. bagd

    bagd

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    i think i'm doing the salt stuff wrong.

    i thought the salt was making me more nauseas....
  18. Crux

    Crux Senior Member

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    If the sodium is combined with a different element, it could increase nausea. If , for instance, you take sodium bicarbonate, baking soda, and have low stomach acid, it would worsen nausea.

    With sodium chloride, in table salt, sea salt, It's the chloride that helps nausea.

    If you don't need more sodium, you can try, lemon juice, apple cider vinegar, or HCL capsules, with some, but not too much water.

    I find that, when I'm nauseous, my blood pressure is also low, so I need both the sodium and chloride, in salt tablets.
  19. ahimsa

    ahimsa Senior Member

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    Some people who have nausea due to orthostatic intolerance do have problems with salt. Even though they may need it, taking extra salt, especially salt tablets, can cause more nausea. I'm sorry that I don't remember exactly why. Luckily, salt tablets don't bother me as long as I take them with meals.

    Another option that you might try is a liquid electrolyte solution - either Pedialyte (TM), or some generic version of it (e.g., Walgreen's makes their own brand). I recommend the unflavored versions and keeping them in the refrigerator. Another option is to mix up your own, either using packets or tablets you can buy (Nuun is one brand) or by mixing it up from scratch (folks have posted recipes for this on other threads in this forum). I think the salt/potassium may be absorbed better when it's in a liquid. And you can keep a glass nearby and keep sipping on it throughout the day.

    These suggestions (extra water, salt, and potassium) are all just band-aids, of course, not a cure. But I think that anything that helps is worth trying.

    By the way, one of my very early symptoms was waking up and having to urinate several times during the night (technical term = nocturia, I remember seeing it in my chart!). It was not very much but somehow I just had to get up and go. Shortly after I started on Florinef that symptom stopped and it has never come back. And you'd think that drinking 2.5 to 3 liters of water a day would make me have to urinate more often, perhaps even during the night, but it does not.
  20. ahimsa

    ahimsa Senior Member

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    Nausea can also be due to low pulse pressure, I think. A low pulse pressure means a small difference between systolic and diastolic pressure (the top and bottom numbers of the blood pressure reading).

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