Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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blood pressure too low

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by charlie1, Sep 13, 2014.

  1. charlie1

    charlie1 Senior Member

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    I was diagnosed with POTS almost 3 yrs ago after having what looked like Addisons Disease the previous 6 months.
    The tachycardia portion of my POTS has been helped with MESTINON but my chronic low blood pressure continued. Now I'm dealing with Neurally Mediated Hypotension. MIDODRINE was supposed to help my low bp's but it did nothing for that and instead caused severe bradycardia (low 30's).

    Recently, I went to a naturopath b/c my chronic low blood pressures were causing my symptoms to worsen.
    The NP dr. did poor mans ttt'ing- sitting was 92/65. After 1 min standing...85/60. After 3 min standing.... 65/45. He said he's never seen anything like it b/c my O2 stats were 84 at the same time. I'm not too worried about that part though b/c it was likely due to the vessels in my fingers constricting in hopes of getting blood to my head and vital organs. I usually have good O2 stats (well, used to anyway)

    These numbers are not good for my brain :( I already have cognitive impairment since my illness and don't want further decline. I've done all self-help measures suggested and have tried the meds florinef and midodrine but no change.
    I've begun thyroid and adrenal naturopathic pills b/c the NP found my average temps of 36.2 to be too low. I will be given an infusion of glycyrhizin? (licorice root) and Vitamin C if my bp has not increased in 2 wks.

    That's the background, here's the question....My DHEA has been 'undetectable' at <.4 even before I became ill. I wonder if there is a relation to that and my PEM, low blood pressures and lack of energy.

    Does anyone else have low DHEA as well as having super low BP's?

    Thanks for any input.
    Charlie
     
  2. Mary

    Mary Senior Member

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    First, I'm really glad to hear that you went to a naturopath. Most regular MDs just hand out drugs (as happened to you) without getting to the cause of the problem.

    DHEA is produced by the adrenal glands. Low blood pressure is one of the signs of adrenal weakness or insufficiency. So it is quite possible that your low DHEA and low BP are caused by weak adrenals. It's good you're taking supps to treat your thyroid and adrenals (which the regular MDs seem to have just ignored!) and hopefully this will help your DHEA levels and raise your BP.

    Also weak adrenals will make you very tired. That happened to me over 20 years ago, I was weak as a kitten, doctors of course were clueless. And I stumbled across a chiropractor who does muscle testing and within 5 minutes found my very weak adrenals (after years and years of severe chronic stress, so no surprise). He gave me an adrenal glandular by Standard Process, Drenatrophin PMG - I had to take 3 or 4 times the regular dose because I was so weak but within a couple of days my energy started to pick up. So when you say you're taking adrenal "naturopathic" pills, I'm guessing you might be taking a similar adrenal glandular product.

    One more thing - you may need more salt. People with CFS and weak adrenals just in general require more salt, something you should look into, and salt can also help raise your BP.

    Pantothenic acid, one of the B vitamins, is crucial for adrenal health, so you may need to take extra panthothenic acid in addition to a good B vitamin Complex (Jarrow makes a good B complex called "B Right")

    So I think there very well could be a connection between your low DHEA, low BP and lack of energy, centering in your adrenals. I don't know about PEM though. My adrenals are pretty well sorted out, overall I'm a lot better than several years ago, but I still have PEM, have not gotten to the bottom of that (yet!)

    Re cognitive impairment - are you taking B12? Many have found that their brain fog went away with B12 supplementation (and you would probably also need methylfolate)

    Best wishes,

    Mary
     
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  3. WoolPippi

    WoolPippi Senior Member

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    I'm so sorry you have such low bp, it's a drag :(

    Part of the problem of having low BP is not getting enough working juice into your brain, the other part is you don't have enough pressure to push nutrients from the blood into your tissues and organs. They are probably depleted and crave vitamins and minerals. (Hair or Stool Analysis can give you confirmation on that).
    Taking a multivitamin won't help with the nourishment problem, you'll just flush it down the toilet.

    About your question concerning DHEA. DHEA itself is a precursor to sex hormones (Androstenedione, Estrogens, Testosteron).
    It's not involved in the steroids to do with blood pressure (Progesteron, Cortisol, Aldosterone)
    They're all synthesized in the adrenals though so there's the common denominator. Looking into "Steroid Hormone Cascade" if you want to learn more.

    Such ridiculous low DHEA readings suggest you don't have enough basic building materials to make DHEA from. These same building materials are needed to make the steroid hormones that are necessary for blood pressure and enduring long stress (which your body is experiencing with the low bp, your other symptoms and overall illness)
    So yes, I'd say low DHEA is related to low BP and fatigue.

    I had a broad spectrum panel done when I first got very ill, 5 years ago. My DHEA was low as were all my hormones.

    I had 90/60 for long times when I was very ill. These are my solutions:
    - taking regular horizontal rests and that's the only time my digestion system works (tummy gurgles).
    - taking progesteron supplements (MPO), not for sex cycle but pure for adrenal support. 100 mg each day.
    - taking hydrocortison for adrenal support
    - having salt with everything, including any water I drink
    - avoiding bananas, Kalium rich things (potassium) and soy (Soy = hormonal plague)
    - destress to ease up in the cortisol demands. Also: sour the stomach as its acidity demands lots of cortisol (drink vinegar, take HCL tablets with food)
    - help nutrients into tissues by aiding at the back office of the tissues: move and stretch the body to get the lymph system flowing. (stretching in ME = yawning and stretching like a cat does in its bed. Nothing more. Yawn, stretch, curl up on the other side)
    - I took DHEA for a while and it made me feel much better. Presumably because it freed up the precursors for making cortisol and aldosterone. I was advised against further DHEA though by dr. Hertoghe in Brussels because it converts into sex hormones so readily: "feel good, grow a moustache"

    My bloodpressure is up now, to 100/80, and I don't get dizzy spells anymore or black outs. I still do all the things I list here. But have to be very careful with the Hydrocortisone and also beware of dehydration.
    Now everything is in balance: thyroid came back up (I take Jodium every day and eat a fat-based diet), brain fog has gone (this went away gradually, over 2 or 3 years)

    I don't know where my DHEA is. But dr Hertoghe was not interested in it. With me, it all revolves around fortifying and aiding the adrenals and keeping the body stress free including free from blood sugar stresses. I have a very sensitive body and stay away from anything that upsets it. And this seems to be a good course for me even though nobody around me sympathizes or understands. But it works, I'm on the mend. (Licorice root is too strong for me. As is nutmeg or loads of cinnamon).

    I hope this is of some help. Good luck.
    edit: vitamin D3. It is essential. Even though my blood panels look good, I cannot utilize it properly in the cells so I have to take more than "normal" people are adviced.
     
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  4. charlie1

    charlie1 Senior Member

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    @ WoolPippi - thanks for you suggestions! I do some of that already plus wear compression clothing to help against the blood pooling in my abdomen and legs. I may try an infustion of Vit C since like you said, I might be having trouble absorbing supplements. My D3 is in liquid form...6000 IU/day.
    I agree that DHEA is needed to help make the cortisol but the problem is that my endocrinologist does not think that I have low blood cortisol...based on the lab results which showed me in the 'normal' range. But don't get me started on normal blood level lab ranges! - here's an excerpt from a paper on hormones -

    The cortisol to DHEA ratio is believed to be so important to your health, that numerous functions in the body are deficient without it. Cortisol and DHEA are both powerful adrenal hormones that have a variety of physiological functions. Cortisol and DHEA are steroid hormones, both synthesized from pregnenelone, the master steroid hormone, which is derived from cholesterol. In many ways, the Cortisol to DHEA ratio modulates biological energy output, and their effects are felt at the cellular level all over the body.

    WoolPippi, do you remember how much DHEA you took per day to get you feeling better energy wise?
     
    Last edited: Sep 14, 2014
  5. charlie1

    charlie1 Senior Member

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    @ Mary - thanks for your input!
    I do take salts...lots of it! I don't take B12 anymore b/c the lab flagged me as being too HI a few years ago. I supposed its time to consider starting again.The naturopath mentioned he might add some B's to my Vit C infusion but he first wanted to see how I make out with the thyroid and glandular support. Both are herbs and vitamins/minerals only.
    It's possible I have Ehlers Danlos Syndrome which is another reason for the low blood pressure. Waiting/hoping to see if I can get a referral to a rheumatologist or geneticist.
     
  6. jstefl

    jstefl Senior Member

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    Charlie:

    I went through a long period of low blood pressure also. I got down to 80/50 with a pulse of 50. At that point I went on Midodrine, which did help some. I also used compression stockings, and sat with my feet up a lot.

    I took Midodrine for about a year, and then started on Valcyte. I was taking my BP every day, and I noticed a definite improvement on Valcyte. I began to reduce that amount of Midodrine, and by the time I was done with the Valcyte, I was weaned off of the Midodrine. That happened back in 2008, and my BP had been stable ever since. I normally run about 110/65, which works pretty well for me.

    I haven't had a need to go back on a BP increaser, but my doctor told me that there are better drugs than Midodrine available now, so you may want to look into that.

    John
     
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  7. WoolPippi

    WoolPippi Senior Member

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    I don't remember. I obtained it semi-legal through the body builders circuit and was self medicating :confused: :whistle:
    But it was a very low dose, because I was very scared.

    dr. Hertoghe gave me the full range of hormones on which I scored low: estradiol, cortisol, testosterone, Thyroid Armour, Florinef, vasopressin and Progesteron. All bio-identical hormones, no side effects.
    I took them all in low starting doses but this got me spinning out of control. This was way too much!

    I cut down and started with the very basic ones (Armour and cortisol and sometimes a bit of progesteron) and the rest levelled out on themselves.

    I advocate physiological doses for healthy people and low low LOW doses for people like you and me.

    You because your body is so starved and out of balance that just a little will do a great deal. Don't overdo it like I did with the whole bag of hormones.

    Me because my body is so sensitive that just a little makes things good. But a "regular dosis" brings me out of balance. Goes for drugs, food, activity, noise, spices, people, mB12. I need to start at one third or less of what regular people take. Perhaps this is you too.

    'cause we'd be singing in the same choir! :bang-head:

    "Progesterone looks fine", said the lab.
    Luckily the dr. said: "Yes. Where you a man. For a female on day 21 of her cycle you are 600% under."
    He taught me to treat by symptoms. Now my sensitive body has become a handy tool.

    I'm no longer under supervision and my blood levels suggest cortisol is fine. Luckily my GP doesn't care much, he's looking at symptoms too. But I dread the day I have to explain all this to an endocrinologist who wants solid bloodwork to back things up.
    Over here you don't have Addison's until your adrenals have shrivelled up completely. Just a little underperformance like in adrenal fatigue is smirked upon. They don't look for optimum numbers in lab ranges, just for the extremes.

    It is scary, going by symptoms alone. I've been doing it since 2009 and have gained my health nearly back but still I have no confidence. I'm still very afraid I'm wrecking something.
    That's why: go low, go slow.

    Once you gain a little stability -no matter on which level of poorly you are- you can afford to poke the body a bit. If you poke with something right it will respond grateful and you can give it more of that. If you poke with something wrong it will take a dip but will recover (because you poked only very lightly) and you know you must not pursue that angle.
    That vit C infusion sounds pretty intense.
     
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  8. charlie1

    charlie1 Senior Member

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  9. jstefl

    jstefl Senior Member

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    My experience with cardiologists is that unless you have a blockage, they have no clue.

    The first cardiologist I went to did all the usual tests, and when she found nothing wrong, prescribed an antidepressant!

    After her, I went to two electro physiologists, who were also clueless. Apparently, the concept of a virus affecting the heart is completely foreign to them. Peckerman and Natelson have studied and written about this problem, but I guess that these specialists were too busy to actually learn something about their specialty.

    If I sound bitter, it is because I am. I had more than $ 100,000.00 worth of tests, and I didn't start getting better until I figured out for myself what was wrong, and convinced a doctor to prescribe Valcyte. I expect more from people that call themselves specialists, and make enormous amounts of money.

    John
     
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  10. charlie1

    charlie1 Senior Member

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    $100,000 !!!! OMG. You're so right...it's horrible when we don't have anyone 'professional' to advocate for us. It's not right..... Same ol' song we hear over and over again :(
    I'm happy to hear that you are doing better now.
     
  11. Mary

    Mary Senior Member

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    Charlie - re your B12 - it's very common for people with CFS to have high B12 show up on blood work. This is because they are not utilizing it properly so it doesn't get into the cells where it belongs. My B12 on a blood test was very high a few years but on hair analysis, it was almost undetectable. From what I understand the blood test is pretty much useless when it comes to B12. I think it's more than likely that you may need it. I'd run this by your naturopath who hopefully will understand it more than your regular MD --
     
  12. charlie1

    charlie1 Senior Member

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    Mary, thank-you for that interesting B-12 information! I think he's likely going to add it to the infusion. I'll do just about anything now in hopes of raising my blood pressure so I can feel less 'out of it'. Then, tackling the PEM will be next. That's another biggie for me :(
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    @charlie1

    I am reviving this old thread b/c I want to ask you some questions about Mestinon and am hoping you are still on PR. I know we discussed this med once before (and I had not heard of it at that time) but I can't find that thread so am reviving this one instead.

    Charlie, I was wondering if you are still taking Mestinon and how it ultimately turned out for you. You said that it helped the tachycardia portion but did not help your low blood pressure. I have the tachy part totally under control with Atenolol and trying to figure out which is the best med to increase my BP. You said that Midodrine caused you to have bradycardia which has never happened to me so we are definitely different in this regard. Do you still take Midodrine?

    I saw an ND for a long time but she was never able to help me with any of the dysautonomia symptoms. Do you still see him? It strange b/c when I had a horrible reaction to IV saline, my O2 stats went down to 84 (exact same # as you) but this has never occurred at any point before or after.

    Florinef also did nothing for me and gave me bad headaches. My temp is also very low (96 or 97 degrees) but this is at least partially b/c of thyroid. Did you end up doing the infusion of licorice & Vit C? Are those supposed to raise your BP? I am not doing anything via IV at this time but was curious especially if licorice can raise BP?

    Is DHEA tested via cortisol test? If so, when I did the saliva cortisol test last at the beginning of this year, my DHEA was low but it was just minorly low (and not undetectable like yours.) I am not sure of the connection of DHEA to BP but hoping someone else here may know.

    I hope you are doing better now, Charlie, and appreciate your feedback if you are still around PR to see this post (especially if the Mestinon ever raised your BP.)
     
  14. harmoniics

    harmoniics

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    i think low cortisol and low blood pressure, Neurally mediated hypotension, orthostatic hypotension are characteristic symptoms of CFS/ME. I had low blood pressure before getting CFS/ME, so i guess mine is even lower due to the effects of this illness. I've always stubbornly tried to keep meds to a minimum. I'm pretty handy with the saltshaker, and I have minimal caffeine (both tea and coffee). The days that I am most dizzy from low blood pressure are the days I try to keep horizontal and rest. Increase blood volume by drinking water. Make sure you have eaten properly. I've noticed that if i tend to run myself down and I am not taking care of myself that my blood pressure gets worse.
     
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