The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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OI with high BP?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by fibrodude84, Nov 29, 2014.

  1. fibrodude84

    fibrodude84 Senior Member

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    My blood pressure has always been low but last few months it's been high. I have symptoms of orthostatic intolerance. I get dizzy and fidgety standing and feel better with hydration and electrolytes and tightening blood vessels.

    Is it possible to have high BP and OI? What can I do if I need to avoid salt and decongestants which help me because they constrict my vessels.

    Maybe the higher BP will result in less dizziness but it's certainly bad for the heart.
     
  2. Martial

    Martial Senior Member

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    Orthostatic hypertension, for the most part I hear that is present since birth however it seems acquirable with certain health conditions too. Off the top of my head I remember mastocytosis being one possible cause, also being triggered and reversed by treating certain infections. If you have been fluctuation with high and low blood pressure I would look into electrolytes though, low potassium can trigger high blood pressure, along with magnesium.
     
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  3. Kati

    Kati Patient in training

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    One subset of orthostatic intolerance is called postural orthostatic tachycardia syndrome or POTS. Its main feature is that the heart rate goes up by 30 beats from resting, and another feature of it is the BP raising. This can be measured through a tilt table test.

    And I disagree with @Martial as in my case at least I have not had OI since young, it came with my disease onset, 6years and 1month ago.
     
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  4. Martial

    Martial Senior Member

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    I was referring to ortho static hypertension which is different then hypo tension type POTS. But it is noted that even Hyper forms of POTS is still acquired in some cases with disease onsets.
     
  5. taniaaust1

    taniaaust1 Senior Member

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    Sounds like you need a tilt table test done.

    Many of us here myself included, have the hyper Adrenergic form of POTS (postural orthostatic tachycardia syndrome). This form of POTS happens in only 10% of POTS patients so can be a nightmare to find a knowable dr to help this (and is more common in those with diabetes or Mastocytosis). Low blood volume POTS can be happening at the same time as the nor adenaline sends the BP up high.

    I suggest to keep up with what helps you and if salt does, keep it up, you may still really need it for low blood volume. This kind of POTS contradicts things and many things which arent recommended in high blood pressure may need to be done eg I have saline IVs at times which will bring a very high BP spike down. I also take Florinef... along with Clonidine. Clonidine keeps the adrenaline from spiking so high so if this is your issue, should help stop the BP from going up so much.

    And yes the BP swings esp if you are what is called a big dipper (swinging very high and low) arent good for the heart and are an added risk factor for having a heart attack.

    Seek out someone who specialises in this kind of thing if you can. (there is something written by Dr David Bell on the different types of dysautonomia found in ME/CFS and if you find it you will see orthostatic hypertension along with POTS mentioned in it).
     
  6. jimells

    jimells Senior Member

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    Like Tania, I have POTS. I also used to be a "Big Dipper" (my autonomic symptoms are currently much better). The doctors only saw the high BP numbers, because emotional stress is guaranteed to set off my ANS symptoms. I used a home BP monitor to demonstrate the swings so they'd quit pressuring me to take anti-hypertensives.

    I'm more concerned about fainting than I am about some bad thing that might happen someday in the future. Doctors like to grab hold of the hypertension diagnosis because it's familiar. They have little concern for treating the actual illness I have today and would prefer to ignore it, since they don't know what to do.

    Quite a while back I did some research on the whole hypertension thing. My conclusion was that doctors tend to over-treat it. I found some research that suggested BPs may not need to be as low as the doctors want to see. I also found research suggesting that reducing salt will not reduce BP, and that matches my own personal experience with a no-salt diet (before I got this horrible illness).

    I take Florinef and supplement with salt. They help some. What really helped me was to get the ANS sensitivities under control. I'm pretty sure that careful pacing, CoQ10, and possibly the "methylation" supplements have done that.
     
  7. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    My first symptom after the bad cold was getting dizzy after some deadlifts. So I took my BP adrer a short while and saw that surprisingly it was high 140/90, having been 120/80 just a week or so previous. I had orthostatic hypotension with sudden onset hypertension.
     
  8. taniaaust1

    taniaaust1 Senior Member

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    I only got a lot concerned about future consequences of this after I came across two different people at a dysautonomia website who had had their BPs swinging just like mine. These two people both warned me to get treatment for this issue ASAP and not give up on looking for a doctor for this. In both their cases, this issue going untreated had caused them to get congestive heart failure and neither was old. That really scared me.

    If Im remembering right, one was only in his 40s (he could of in his late 30s, he was around my age or not much older at the time), the other was in his/her 50s.
     
    Last edited: Dec 23, 2014
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  9. Countrygirl

    Countrygirl Senior Member

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    I have only just read this thread ( with our memory problems I won't swear to anything though :)) after searching for a topic on hypertension and ME.

    I have just returned from a GP appointment. Actually, I am in complete shock. My area always had the reputation of being the worst in the UK for doctor hostility towards ME (the so-called secret files on ME that have been hidden away under the Official Secrets' Act relate the stories of those of us who have been so abused, neglected and died because of the marked hostility of GPs here that even the GMC took the initiative and phoned me to tell me that they were aware of how bad the situation was for us) yet my GP today informed me she was aware of our problems with medication and enquired whether she would like me to be offered later appointments as she knew that early mornings were a bad time for those of us with ME. I was so overwhelmed by the change in attitude that I nearly hugged her.................I did stop myself just in time, fortunately, and regained my composure. Anyway, I digress..............

    Since 2007, I have had three admissions to the emergency department with apparent strokes. On the first occasion, despite being very ill and unable to walk, once they discovered that I had ME their attitude changed abruptly and I was ordered to leave the hospital at 2 am in the morning even though I lived 14 miles away in the sticks and with no one to take me home. I collapsed in the corridor on the floor and a neighbour kindly rescued me in the early hours and drove me back to the village. I spent the next three months with an apparent ME relapse.

    On the second occasion, I recall sitting in front of my desk top computer one afternoon and then, the next thing I recall, is being aware of rough material pressing into my cheek. It was the landing carpet outside the bathroom door and it was very dark. My next memory is that it was daylight and I was sitting on the couch with no recollection of how I got there. I had no idea of what happened to me but I couldn't wake up for a whole week, which seemed bizarre after 30 years of ME-weapon-grade insomnia. I don't think I ate, but my memory was wiped clean. I tried to leave the house to get food from a shop after about five days.............and passed out in the ready-meals' freezer.

    Another ambulance took me very much against my will to A&E. Again, despite losing sensation down my right side , I was discharged when they were told I had ME. I witnessed and heard two members of staff laughing about the diagnosis and ridiculing the disease. Again I was ordered out by the staff and ended up on the floor as my legs wouldn't work and I kept vomiting. They hastily gave me an ECG and scooted me off to the emergency medical unit and told me that I seemed to have cardiac problems.

    By the following day I was very ill indeed, and couldn't stand. I also felt very 'poisoned'.........a sensation I associate with ME. However, they told me that I was, in their view, a cardiac patient, and therefore not their responsibility and I was discharged. I couldn't walk and had to be taken out in a wheel chair and into a friend's car.

    I experienced a severe relapse of apparent ME symptoms, although it was slightly different and I also developed severe breathlessness. I received a hospital appointment for the cardiac unit, but was too sick to get out of bed and so couldn't attend. My doctor was instructed by the hospital to follow this up when I was well enough to cope with further investigations. He failed to do this. He had no patience with ME and ignored me. I have been left with some permanent damage from these two attacks.

    The third time it occurred, I was again whisked away and this time admitted to the stroke ward where I was treated with kindness.........such a novel experience. A CAT scan showed brain damage but I was told they didn't know how to interpret it, so it was ignored. Maybe it is due to aging rather than either ME or the stroke-like attacks. Again I was very ill for three months with an apparent ME relapse and severe breathlessness. I have had two more 'events' of a similar nature but I had the sense this time not to ask for help but to remain at home.

    However, I think now the mystery is solved and I think it may be a result and a characteristic of ME and wonder if others who developed this illness have now developed the same problem.

    This morning the doctor told me I have 'malignant hypertension' and my severe ME relapses were in fact hypertensive encephalopathy. It is so very similar to ME that it is not possible to tell the difference in my experience. So for 30 years I had severe orthostatic hypotension and now I have orthostatic hypertension when my BP suddenly rockets to about 230/130 or higher. It seems that it is the speed of change which is the problem as the autoregulation system cannot cope with such rapid hikes and one develops the symptoms of a stroke and permanent damage.

    I have tried ramipril but it has caused a large patch of psoriasis across my face so I have stopped taking it, not that it helped much as my BP still rose sharply and alarmingly, making me feel sick and as though I was about to experience a stroke. It is scary!

    I wondered if anyone else is experiencing malignant hypertension after many years of hypotension as a result of ME and whether they have found a medication to control it. I do recall Prof Pinching telling me that if a GP treated our hypertension as essential hypertension that the situation could be aggravated and we would be more likely to have a stroke.:( Has anyone else travelled down this road yet and have some words of wisdom...........or do I really need to get a wriggle on and rewrite my will?

    Thanks!
     
    Last edited: Jan 5, 2015
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  10. alex3619

    alex3619 Senior Member

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    Wow, if this is replicated nationwhide it would make a big difference.
     
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  11. alex3619

    alex3619 Senior Member

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    High blood pressure with OI and ME is fairly common. OI is about loss of bp control, and a decline in bp. In POTS this is compensated for by rapidly rising pulse rate. Other OI patients have other responses, which can include bradycardia (the opposite of tachycardia).

    I have high blood pressure and OI. When rested my high bp seems to prevent severe OI episodes, but when exhausted I can pass out on standing or walking up more than about three steps.

    In a number of places recently we have debated on what to use to treat high bp in ME. Its not as easy as most because of our abnormal vascular regulation and low blood volume. We are also often mineral depleted. So ACE inhibitors and diuretics may be problematic. That leaves, I think, calcium channel blockers and nitro drugs.

    I have never investigated orthostatic hypertension.
     
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  12. Countrygirl

    Countrygirl Senior Member

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    Thanks Alex. I didn't realise it had been discussed elsewhere. I will search for the relevant threads.

    My GP has prescribed amlodipine, which is an ACE inhibitor, but after reading your post above, I wonder if I should take it. I have learnt to be very wary of taking new meds with ME and the list of warnings suggest to me that it might not be a wise choice. The warning not to breast feed is something I can live with :rofl:.......not much danger of that............................but I suspect that our circulatory and blood vessel problems may make amlodipine a rather risky treatment. Surely, widening the blood vessels would have a detrimental affect when we have probably have low blood volume and the ANS's attempt to compensate for this might cause the BP to shoot into orbit again. I suspect this was Prof Pinching's concern.

    Off to search for more information.....................:thumbsup:
     
  13. Strawberry

    Strawberry Senior Member

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    Amlodipine is actually a calcium channel blocker: http://www.drugs.com/monograph/amlodipine-besylate.html

    I have been on it for about 4 or 5 months, and have no idea what to say about it. My fatigue and ability to stand hit rock bottom after starting it, but my doctor just doesn't care about anything ME/CFS, so I am still on it. I found out it is safe to quit, so I went off it for about two weeks. My fatigue and jello legs didn't get better, and I was thinking of trying liquorice for fatigue, so I went back on it. I guess I am now used to the jello legs and it seems to be the normal me. Also I sleep better at night as I am not being woken up in the middle of the night thinking that we are experiencing a mild earthquake. Then finding it is my heart pounding that is shaking the bed...

    So please do be careful! I fear this medicine has made me worse, although my BP is normal again. And not rocking the bed with my heart pounding is nice. But not being able to stand for more than one minute without my leg muscles feeling like they are starting to liquify really sucks.
     
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  14. Countrygirl

    Countrygirl Senior Member

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    Strawberry thank you for the warning! I don't know what to do as I can't get to see a doctor now to discuss this with for at least three weeks and I am nervous of the sudden hikes in BP because of the damage they do. I am even more worried about aggravating the ME though. I guess this is going to be an ever increasing problem as we get older and new signs of advancing decrepitude require medical intervention that potentially will exacerbate the wretched lurgy.

    Actually, it was my doctor who told me it was an ACE inhibitor, so I hope she is up to speed with hypertensive meds.

    Perhaps the answer is to pay for Mukti Varti which has worked well for my friends with hypertension. It looks and smells like dried elephant dung and is probably something unpleasant scrapped off the bottom of the Ganges, but it is supposed to work and is without any side effects. It is the safer option,although it is now expensive.
     
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  15. Strawberry

    Strawberry Senior Member

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    Definitely do your homework. I do stay on it because my blood pressure is normal now, but I wish it would eliminate my heart palpitations!

    Sounds lovely! :eek: Why can't things that work taste GOOD??? lol
     
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  16. Countrygirl

    Countrygirl Senior Member

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    I have just been phoned by the chemist to say that they cannot supply Adalat/Nifedipine . It appears that the GP changed her mind, but it is still a calcium channel blocker. I am very wary now of taking this class of hypertensive med after your experience, Strawberry. Does anyone know if calcium channel blockers are usually a problem for us, please? I need to gather some sort of evidence for my GP as she knows very little about ME as yet and I need to design an intensive educational programme for her. :whistle::)
     
  17. helen41

    helen41 Senior Member

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    I have had BP probs for 3 years, well controlled by Ramipril. I was put on a second BP med (clonidine) for night sweats, and a whack of supplements by the complex diseases clinic in Canada a few months ago. It was magic.
    I went to my family Dr last month, telling her it was really helping, but unfortunately, she cut me off the supplements, as my BP had gone up, then the clonidine.
    It didn't come down, and the last 5 days has been fluctuating wildly. When I presented in ER today, the nurse thought I was having an anxiety attack, until they realized my diastolic pressure was 141. I saw one reading at 210/136.
    It went up and down through the day, despite meds, and when they discharged me, it was better, but still at 166/100.
    The Dr spent about an hour with me. I was treated really well.
    I have no sign of heart disease, although they will do those tests too, just in case. He feels it is my ME/mito problems that are driving my BP changes. I haven't met with a lot of the disbelief others have, but it still was rare to meet a Dr who is willing to say that ME could be causing my dangerous blood pressures.
    He put me on metoprolol while waiting for a consult with an internist. Fingers crossed they can find something to help, as it is horribly uncomfortable.
     
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  18. Jay franklin

    Jay franklin

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    I do not have CFS but have struggled to find some way of dealing with high BP, pulse, insomnia, anxiety and night sweats. My siblings and mother have the same problems only worse.

    All of my symptoms got to dangerous levels with a crash following 18 months of low carb eating two years ago.

    The first half of this year I experienced very good improvement after using an extensive range of prebiotics but the BP, pulse, anxiety problems returned, albeit at a much lesser level. BP was inching up to 145/90 range ten days ago.

    Recently arginine plus pycogenol (pine bark) had helped some but then I tried mukta vati (MV), which a friend here on PR recommended trying. It is a blend of herbal/prebiotic seeming substances sold in India. Within two days on MV my BP was running around 125/75. If I take two pills a day my BP goes a bit low - 105/60 ish. Tonight it was low on one pill. I have tried a couple Rx meds, including an expensive ARB (olmesartan) with very poor results.

    I am kind of stunned by what has happened. When you read on a couple hypertension forums this result does not seem that unusual. I do have some nasal congestion from the mukta vati, which is a common side effect. Anxiety is down to zero and night sweats have been minimal. My pulse was 90 after my low carb crash (which took two years to recover from), and tonight it was 60. 11 months on prebiotics, starting with potato starch, played a very big role, but mukta vati seems to be helping the remaining issues.

    I bought the Ivy's MV, which is available on Amazon in the US. There are other brands that are less expensive.

    Don't know how this will turn out, but I throw this out for consideration.
     
  19. Forbin

    Forbin Senior Member

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    Dr. David Bell, on the scene during the Lyndonville ME/cfs outbreak of the mid 1980's, has written about ME and OI and its relation to hypovolemia.

    http://www.oiresource.com/tresults.htm

    I'm not sure if this is generally accepted, but I think that the idea is that blood vessel constriction causes a rise in blood pressure while at the same time reducing blood volume because there is simply less space for the blood in a system with chronically constricted blood vessels. Thus, you could have hypertension at the same time that you had low blood volume (hypovolemia). I'm not sure if this would reduce your red blood cell count, or just the amount of your blood plasma, or maybe both.

    Correct me if I am wrong about this, but that's what I recall.
     
    Last edited: Jan 17, 2015
  20. alex3619

    alex3619 Senior Member

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    I am fairly sure it would decrease red total blood cell count, total serum plasma, total platelets, and total white cell count. However concentration of the cells and platelets would look normal in a standard test, and so anemia would not be considered. Yet if total cell counts are down then oxygen carrying, carbon dioxide clearance, and immune response (including healing) would be down.
     
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