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Narrow Pulse Pressure

Discussion in 'General Symptoms' started by artaylo7, Jul 12, 2017.

  1. artaylo7

    artaylo7

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    Hi Everyone!

    I'm new to this forum and would appreciate any input.

    I'm undergoing lots of testing right now, but recently had a positive tilt test with Orthostatic Hypotension. Cardiologist prescribed Midodrine in the short term and am waiting for Northera.

    I've noticed that on standing my systolic drops, but diastolic raises resulting in very narrow pulse pressure. Pulse rate increase of 30+ as well. When this happens, I feel lots of pressure in my neck & head and usually will have brain fog that lasts for hours.

    Not seeing much improvement with Midodrine and tends to get progressively worse throughout the day. I'm also getting bradycardia now as well with sitting or lying on Midodrine, which I know is a side effect. The narrow pulse pressure was happening before Midodrine as well.

    I am drinking water, adding salt, compression socks, raised head of bed, avoiding heat, etc. The narrow pulse pressure with increased diastolic seems to be what makes me feel yuck...

    I've read narrow pulse is caused by few things such as low blood volume, cardiac issues, etc.

    Hoping someone may have some insight..
    Thanks!!
     
  2. Hutan

    Hutan Senior Member

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    Welcome @artaylo7

    Yes, low pulse pressure doesn't make for fun times.

    Do you have symptoms of ME in addition to those that might be caused by orthostatic intolerance (e.g. sore throat, swollen neck glands, neurological symptoms, body pain)? If you have ME as well as orthostatic intolerance, then my experience is that there are fewer problems with pulse pressure when you are well-rested. 'Well-rested' for you now might mean a lot more rest than you used to have.

    Have you kept a log, quantifying activity levels and symptoms? Maybe you can pick up a pattern linking activity levels and orthostatic intolerance?
     
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  3. ryan31337

    ryan31337 Senior Member

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    Hi @artaylo7,

    Welcome to the forum.

    OI is a really complex issue with so many overlapping factors. It looks like you've already covered the basics, so all I can really say is to try and get yourself to a really good clinic specialising in OI/dysautonomia, don't put much faith in a run of the mill cardiologist.

    Personally I benefited from taking Ivabradine, though I am a classic POTS case, whereas it seems you may not be given your OH. I think all you can do is keep plugging away with different treatments under the guidance of someone that really knows what they're doing.

    Hope you get some relief soon.
    Ryan
     
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  4. Valentijn

    Valentijn Senior Member

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    Yohimbe helps me with that, though I still have to be careful. I can sit up all day though, when on it, so that's nice :)
     
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  5. PatJ

    PatJ far and free I gaze

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    I have the same narrowing of pulse pressure on standing (it narrows the longer I stand, while my BP increases to try to compensate), and low BP when lying down (80/50 average). It's bad enough that I usually have to lie down after a 45 minutes max, and stay down for at least an hour before I can be upright again. This leaves me bedbound for much of the day. I'm also quite sensitive to motion (it can easily induce poor balance or motion sickness.)

    This article on OI by Dr. David Bell lists subsets. One of them is "Orthostatic narrowing of the pulse pressure".

    I've never tried pharmaceuticals for BP. My last doctor wouldn't prescribe Florinef and now I don't have a doctor and am too ill to travel. Lots of extra salt and electrolyte drinks don't do anything for my BP. The only thing I have found that consistenly has any useful difference is:
    * Inclined bed - reduces dizzyness when standing
    * compression socks - increases my BP a little which increases my upright time a little
    * Shilajit - is known to increase BP. Helps me to stay upright longer. I'm using Jarrow brand Shilajit.

    I've tried two g-suits. Both leaked. But I was able to find out that they helped a little and improved my mood. The downside was that I would feel dizzy and get in a very irritable mood after I stopped wearing the g-suit for the day. The irritable, very negative mood would last for roughly 12-18 hours and then I would be back to normal. So apparently my mood improves along with my BP increase, and degrades on a BP decrease. This rollercoaster wasn't worth it so I stopped using the g-suit. But, the woman who runs OI resource (the site in the link above) has seen wonderful effects from her g-suit.
     
  6. PatJ

    PatJ far and free I gaze

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    I'm glad you mentioned Yohimbe. I tried it and got to watch my BP act like a YoYo for the next couple of hours. It did raise my BP close to a normal level (intermittently), but it fluctuated wildly until the Yohimbe wore off. After some research I found that it's known that LDN and Yohimbe don't mix well and can cause fluctuations in BP. After the Yohimbe wore off I also had the same low-BP dizzyness and bad mood that I got from the g-suits.

    Maybe Yohimbe will help artaylo7 if she isn't taking LDN.
     
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  7. Chezboo

    Chezboo NOT MY BOARD

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    I wish I had something useful to say on this topic but I don't. I have very low pulse pressure and a 30+ heart rate increase when standing (probably nearly always except on the best of days). I have ruled out wasting time, money and energy going to the one place in my city that has a specialist (neurologist in this case) that apparently knows anything about POTS and does a tilt test. Based on many comments I have read over the years, it appears the treatment and testing is limited in the extreme. I have tried salt and electrolytes which have zero impact. I admit to not bothering with the sucking in stockings, sounds painful, exhausting and too hot for most of the year here. To be fair I am pretty much couch bound (in a horizontal way) with ME so I can't be bothered with all that anyway. I will look into Yohimbe and Shilajit based on above comments.

    Really I think I'm commenting now (I'm usually a sad old lurker) because while you hear much about POTS and other forms of OI it is hard to find anything substantial on low pulse pressure. The Doctors I've seen here (Sydney Australia), even the ones who supposedly 'know and treat CFS' were always surprised when I explained I had POTS. By way of explanation/education I would preform a poor mans tilt test for their viewing pleasure. Even after all the effort, there was no way these chaps were going to get their heads around pulse pressure vs blood pressure. They litteraly had blood pressure on the brain, pulse pressure was probably something that happens when you have a catastrophic physical trauma and bleed out and die on the spot. I really just wish this symptom was recognised more as I wouldn't be surprised if a decent number of pwME have it not to mention other people with dysautonomia.
     
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  8. artaylo7

    artaylo7

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    Thank you for the reply!

    I get neck tightness and my throat and glands feel sore (externally). Not sure if that is what you mean by sore throat...

    I can usually feel it coming and it starts with throat tightness/pressure that leads up to head pressure and headache along with severe brain fog. I'm not sure if I have ME...I've yet to get very clear answers. I've been forced to rest alot more lately, but I think in general I am not well-rested. I have pretty bad insomnia and I tend to just keep going.

    I've been pretty good lately about charting meds, fluids, symptoms, but have yet to see a pattern that makes sense. Although, I think it may take some time...
     
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  9. artaylo7

    artaylo7

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    Thank you! I honestly didn't realize how complex it was until very recently! I haven't looked into Ivabradine, but will... I have an appt with a specialist @ Mayo in late August and I'm hoping they'll be a little more versed, able and willing to spend more time on my case.

    Thanks again!
     
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  10. artaylo7

    artaylo7

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    Never heard of this! I'll have to check it out. Thanks!
     
  11. artaylo7

    artaylo7

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    That sounds like fun! hah. I'm not on LDN, nor know much about it, but I really appreciate reading different experiences. I know these types of things are very individual specific about what works or doesn't work. Hoping one of these random things I throw will stick. :)
     
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  12. artaylo7

    artaylo7

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    So sorry to hear this!

    I'm trying everything with little results yet. Although, I have noticed in the past week the severe brain fog that made me feel like I had dementia seems to be lessening. Not sure if it's a combination of everything or what. The compression socks are a pain! I live in Arizona and I feel ridiculous wearing those in 110 degree weather. :)

    Everyone I've mentioned the narrow PP to completely dismisses me. I've had 2 Dr.'s say I must have a bad blood pressure cuff. I actually brought in my cuff to my cardiologist Thursday so I could have them check against manual reads for accuracy. Guess what!?!? My cuff was totally accurate! Even still, he just said let's try Northera and see if that improves your symptoms, completely disregarding my concerns. I specifically asked about low blood volume and he looked at me and said "you have plenty of blood." Ha! Apparently he has magic eyes and could just tell.

    I have an appt with a specialist next month and I'm really hoping they can address it a little better. I'll update.
     
  13. artaylo7

    artaylo7

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    Thanks so much! So sorry to hear about your suffering!

    That is really interesting to hear what has made a difference for you. Mine continually narrows as I stand as well. After a few minutes, my monitor can no longer read my BP. Lately, I seem to hit a wall around the 10-15 minute mark and have to sit down. Although, today was a better day in that regard, but I'm not sure why. I've been wearing socks, raised bed, increased salt, etc... maybe they are starting to have an impact... hopefully.

    I have not heard of Shilajit, but will definitely look into it. I've read a little about G-suits, but not much yet.That's really unfortunate that it caused such a roller coaster for you. Thanks again for the information.
     
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  14. Hutan

    Hutan Senior Member

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    The sore glands symptom is typical of ME. The tightness around the neck might be part of the 'coat hanger pain' (neck and shoulder tightness) that comes from orthostatic intolerance.

    This is a talk by Prof Callaghan that explains the symptoms of orthostatic intolerance.


    You might be interested in this thread in PR.
    https://forums.phoenixrising.me/ind...-in-the-chronic-fatigue-syndrome.30408/page-2
     
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  15. bombsh3ll

    bombsh3ll Senior Member

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    I'm interested in this too. I have either POTS or something very similar with BP tending to go high so would have to be careful if it raised BP too much. I suspect my problem is low blood volume. I found the following info on shilajit;

    For thousands of years Shilajit has been used to help support:
    • Energy
    • Memory
    • Mood
    • Absorption of vital nutrients
    • Enhanced potency and effectiveness of other nutrients
    • Sharp intelligence
    • Balanced blood sugar
    • Efficient detoxification
    • Optimal oxygenation and the body’s natural antioxidant response
    Renew Your Cells
    Shilajit is known for its ability to rejuvenate a cell by driving oxygen and nutrients into the cell (4) and supporting the body’s natural antioxidant activity, whereby the body rids itself of free radicals. (5)

    Can't hurt to try so long as it's not too expensive!
     
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  16. PatJ

    PatJ far and free I gaze

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    Here are some notes I've gathered on Shilajit (the cost is an average $20 USD per bottle at Vitacost at the moment):

    This information should not be considered medical advice.

    * Diuretic (mild, usually only in first 1-3 weeks, then supposedly helps to restore regular urination. [It hasn't worked that way for me])
    * Ayurvedic rejuvenative
    * Can be useful for chronic constipation and frequent urination ("...commonly used to reduce frequent urination occurring due to diabetes mellitus." [So maybe it would help diabetes insipidus which is common in CFS/ME])
    * Anti-anxiety, anti-stress and anti-inflammatory
    * May be a libido enhancer
    * May increase or decrease BP
    * Contains ionic minerals
    * May help with nutrient metabolism

    Ayurvedic, dosing and when to take:
    https://www.ayurtimes.com/shilajit-asphaltum-benefits-uses-dosage-side-effects/
    * Minimum 125mg, max 3g (rare); usual is 250-500mg/day.
    * May produce a warming sensation, can be reduced by taking with milk.
    * Can be used long term.
    * Morning on an empty stomach, evening before bed. (This conflicts with the bottle directions to take it with food)

    From https://supermanherbs.com/use-shilajit-control-blood-pressure/:
    It 'repairs all cells' and functions well on low blood pressure patients.

    From https://draxe.com/fulvic-acid/:
    Fulvic acid is considered the ultimate nutrient booster that improves gut health and immune function, helps boost digestion and nutrient absorption, protects cognitive health, improves detoxification, lowers free radical damage and inflammation, improves energy levels and lowers pain, and repairs and protects the skin.

    From LiveStrong:
    "The adaptogenic components of shilajit have been known to benefit some, though you should understand that if you've taken the herb for two months and haven't noticed any change in your health, you probably won't see any."

    From Hip on PR:
    One thing to be aware of is that when fulvic and humic acids are mixed with chlorine (from chlorinated water) they apparently create deadly carcinogens called trihalomethane and mutagen X.

    So it may be a good idea to avoid drinking chlorinated tap water at the same time as taking fulvic and humic acid supplements.

    Nutrient absorbtion, From Hip on PR:
    Since fulvic/humic acids make cell membranes more permeable, and so make cells better able to absorb nutrients, I guess it might be a good idea to take the vitamins and minerals that our cells are short of in CFS, at the same time as taking these fulvic/humic acids.
     
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  17. artaylo7

    artaylo7

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    Thanks!!!
     
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  18. artaylo7

    artaylo7

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    Wow. Thanks so much for all the information! That is incredibly helpful!
     
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  19. bombsh3ll

    bombsh3ll Senior Member

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    Confused re Shilajit now - it seems to contain a lot of heavy metals which are implicated in toxicity.

    No idea if the tap water here is chlorinated but given I drink litres of the stuff I'd be taking a big risk if it is.

    Can't win can we!
     
  20. PatJ

    PatJ far and free I gaze

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    I'm not positive about this but I think the heavy metals problem is related to lower quality producers. I use Jarrow Shilajit. Jarrow is known for high quality products.

    And the heavy metals concern is probably overblown. Here is another view.

    Distilled or dechlorinated water is an option to avoid the chlorine/acid interaction.
     

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