Poll on blood pressure

[MeSci]

Unfortuantely as Sushi points out, there are those of us here who do not fit this survey to be able to answer it. eg In my case. At night when asleep.. I have low BP or normal. When Im just laying and not asleep, my BP is normal. When Im upright standing or doing things standing.. I have hypertension. Sitting for me varies between normal and having hypertension depending on how long Ive been sitting for.

I dont have a commonest or closest, its just extremely variable.

I'd like to add extra options but don't know how.

 

[SDSue]

My wrist monitor (which calibrates well with the arm one that the docs use) tightens itself so presumably has a set tightness. It always feels about the same.

I cannot forget a hospital nurse pretending to take my bp with an uninflated cuff. (I have read that it is not uncommon for staff to make up bp readings, maybe to save time or because their monitor isn't working. I definitely had the latter happen with a paramedic, as they had put 2 bp readings on their report but their monitor hadn't been working: "Dead", as one of them had said, and he didn't mean me. )

But this nurse spent several minutes faffing about with her monitor before writing down a reading, despite my telling her that it was loose.

I had the same thing happen but with temp. My temp prior to my tilt table was 96.8, which was quite typical for me. The nurse checked it twice, wrote it down, and then the doc changed it despite my protest.

As for BP, Mine was quite low for years and has recently become high. Could be age, could be ME, could be kidneys.

Lastly, what does "peeing for England" mean? It's quite possible I've been doing it for years and had no idea lol!

 

[Sushi]

Lastly, what does "peeing for England" mean? It's quite possible I've been doing it for years and had no idea lol!

I'd guess it means Diabetes Insipidus, something common in this patient group. Not retaining water and peeing out a huge volume each day. If I remember correctly, Rich Van K used to say anything over 2.5 liters a day was a good indication. (correct me if I'm wrong!) Now, aren't you eager to measure your pee? He wrote some good posts on why this is happening. I have them somewhere in this computer....

Sushi

 

[MeSci]

I'd guess it means Diabetes Insipidus, something common in this patient group. Not retaining water and peeing out a huge volume each day. If I remember correctly, Rich Van K used to say anything over 2.5 liters a day was a good indication. (correct me if I'm wrong!) Now, aren't you eager to measure your pee? He wrote some good posts on why this is happening. I have them somewhere in this computer....

Sushi

I think it's more logical to use guidelines that take body mass into account, as normal blood volume is dependent on body mass, and the amount of blood filtered by the kidneys to produce urine depends on blood volume; therefore, all other things being equal, normal urine volume should be proportionate to body mass.

I made a note of two relevant resources some years back which I have cited as saying:

Depending on source, urine output should be no more than 40 ml/kg/day [1] or 50 ml/kg/day [2]

1.Ball, S. (2005) Diabetes insipidus, Medicine , vol. 33 , Issue 11 , pp.18-19, accessible online at <http://www.medicinejournal.co.uk/article/S1357-3039(06)00271-4/abstract>

2.Clinical Biochemistry, Metabolical and Clinical Aspects, edited by William J. Marshall, MA PhD MSc MBBS FRCP FRCPath and Stephen K. Bangert MA MSc MB BChir MRCPath, Churchill Livingstone, 1995, p.37, online version available at

<http://books.google.co.uk/books?id=...hl=en&sa=X&oi=book_result&resnum=2&ct=result>

Unfortunately the Google books online version seems to have gone, but it may be accessible elsewhere, and the full text of the first article is not accessible without payment.

 

[Little Bluestem]

30 years later my resting BP is still very low and I am still peeing for England sadly. The water retention has been a feature all through this for me. If I drink a lot of fluid my stomach swishes as I walk and my body swells up. So I've got both the water retention and the peeing.

Do you drink salt water/electrolyte solution? I drink some of both. If my fluids start 'going right through me', I find that some additional salt water helps.

I have gained weight. I wonder if part of it is fluid retention.

 

[Little Bluestem]

Also you are supposed to wait a couple of minutes after doing a reading to allow your vessels to get back to normal state before doing another reading.

I was waiting 5 - 10 minutes between readings. I was lying in bed, so I don't think my blood pressure was actually changing.

 

[Snow Leopard]

I'm still young and my blood pressure consistently tests as: normal.

 

[ukxmrv]

Do you drink salt water/electrolyte solution? I drink some of both. If my fluids start 'going right through me', I find that some additional salt water helps.

I have gained weight. I wonder if part of it is fluid retention.

Yes, I've been trying all of these thing since the 1990's when I had my first "poor man's TTT".

It's actually a relief when I pee a lot and loose some of that fluid every few months. The rest of the time I am walking around in quite an uncomfortable and heavily waterlogged state. I do feel better after for days in my body (if that makes sense) if I have one of these all night peeing episodes AND the weather is cooler.

Something else that might be relevant is that I stopped sweating about 15 years ago.

 

[Countrygirl]

Hi C.G. Our ME is alike in this way. I had low BP too all my life and also during my early ME years eg 80/60 or 80/55 was my normal BP.. if I got up too quick, I'd fall over.

This thou changed after I'd had this illness for 10 years or so and now I get high BP when upright. Recently at the hospital in one minute of standing it was up over 190 (I had to sit at that point, it would of gone up higher if I'd keep standing).

I went throu a stage in between these two things of where my BP was up all the time when upright with my dystolic commonly at near 100. (my dystolic can get up to 136 eg 170/136)

scary hearing about your strokes. Im think Im getting close to having those at times (esp since I also have MTHFR mutation so puts me more at risk).

I havent noticed this kind of BP issue in those who havent had the illness so long eg those who have had it less then 8-10 years. So I suspect its a later stage thing.

Yes, you are right Taniaaust. For me, my BP now shoots up when I stand and the longer I stand the higher my BP, which is the complete reverse of what it was in the first 30 years of ME. I think I read that orthostatic hypertension is also a form of POTS. Does anyone know if this is correct?

 

[belize44]

My wrist monitor (which calibrates well with the arm one that the docs use) tightens itself so presumably has a set tightness. It always feels about the same.

I cannot forget a hospital nurse pretending to take my bp with an uninflated cuff. (I have read that it is not uncommon for staff to make up bp readings, maybe to save time or because their monitor isn't working. I definitely had the latter happen with a paramedic, as they had put 2 bp readings on their report but their monitor hadn't been working: "Dead", as one of them had said, and he didn't mean me. )

But this nurse spent several minutes faffing about with her monitor before writing down a reading, despite my telling her that it was loose.

I really get irritated at nurses who tighten the cuff, look puzzled, allow some air to escape and then completely tighten it again. Of course the reading is going to be off!

Anyway, I chose normal because my normal is 120/80. On some days when I first rise for the day it is 140/90. A few hours later, it can drop as low as 100/70. When extremely tired, such as having to rise earlier than usual for a doctor visit, it can shoot up to 160/100. As long as I faithfully use sea salt and keep fluids going, I can keep it pretty near normal.

 

[MeSci]

I really get irritated at nurses who tighten the cuff, look puzzled, allow some air to escape and then completely tighten it again. Of course the reading is going to be off!

Anyway, I chose normal because my normal is 120/80. On some days when I first rise for the day it is 140/90. A few hours later, it can drop as low as 100/70. When extremely tired, such as having to rise earlier than usual for a doctor visit, it can shoot up to 160/100. As long as I faithfully use sea salt and keep fluids going, I can keep it pretty near normal.

I really should have included options like "varies between normal and hyper", "varies between normal and hypo" and "ranges between hypo and hyper via normal"! But I was too tired to think of all the right questions.

 

[belize44]

I really should have included options like "varies between normal and hyper", "varies between normal and hypo" and "ranges between hypo and hyper via normal"! But I was too tired to think of all the right questions.

Yeah, I know how that is; being too tired to be concise. I have been working on a novel for years and it frustrates me no end, to have to wait for the days when my mind is operating clearly.

 

[Butydoc]

Keeping this as simple as possible, but discussion would be welcome.

Hi MeSci,

Before CFS/ME my BP was slightly hypertensive ( 138/80). Since the developement of CFS/ME my BP is much lower. When i'm crashing, my systolic is in the high 80s. When I'm feeling well, my BP hovers around 100/70.

Best,
Gary

 

[charlie1]

I've always had symptomatic low blood pressure and am now 55 yrs old. Since my dx of POTS 2 1/2 yrs ago, its gotten worse as my autonomic nervous system is so messed up now. I have documented bp's of 87/80 ( pp 7), 117/48 (pp70), and low pressures of 86/36, 77/42 etc. I rarely have a systolic higher than 100 except for when I had the wide pp of 70. I've also always had a low heart rate for not being an athlete (pulse in 50s) but since ill, have been hospitalized when in dropped to the 30's. Most of my PEM crashes will involve days to weeks of bradycardia and severe hypotension following stress of any kind, physical or mental.
I've never been dx with ME/CFS but fit the criteria.

 

[MeSci]

I've always had symptomatic low blood pressure and am now 55 yrs old. Since my dx of POTS 2 1/2 yrs ago, its gotten worse as my autonomic nervous system is so messed up now. I have documented bp's of 87/80 ( pp 7), 117/48 (pp70), and low pressures of 86/36, 77/42 etc. I rarely have a systolic higher than 100 except for when I had the wide pp of 70. I've also always had a low heart rate for not being an athlete (pulse in 50s) but since ill, have been hospitalized when in dropped to the 30's. Most of my PEM crashes will involve days to weeks of bradycardia and severe hypotension following stress of any kind, physical or mental.
I've never been dx with ME/CFS but fit the criteria.

Yikes - that is seriously low! Have you been thoroughly checked out for all the conditions mentioned here?

I'm not sure whether bradycardia is common in ME - I think that (episodic) tachycardia is more typical.

 

[charlie1]

Thanks for posting the list of conditions MeSci. I'm hoping my neuroologist will refer me to a rheumy or geneticist for EDS dx as I dislocate daily now. MSA, ADDISONS and seizures were all ruled out before the dysautonomia diagnosis. (POTS, Vaso vagal syncope)

 

[NK17]

I had low BP as a child and teenager, when I got Mono at 14 yrs old BP plummeted even more.

One day while walking to school with a schoolmate I didn't see a lamp post and smacked my head hard on it, luckily my friend helped me get to school, where I didn't even bother to ask to lay down at the infirmary.

I've many other episodes that now seem clearly caused by low BP and/or Low Blood Volume.

Until a few years ago, before my ME came back in full force and I was diagnosed by Dr. Kogelnik, I was bradycardic, so regular doctors always assumed I was the perfect athlete ...

I've experienced visual disturbances that I now think are related to being hypotensive and I'm also peeing for England (or shall I say for Italy, while in the US). I've experienced severe polyuria at times of big crashes, I'm trying to work on it and I'm very interested in Rick's V K notes on it @Shushi .

I'm thinking of doing an at home poor man/poor woman DI test, since I can't think of looking for a knowledgable endocrinologist at this time while recovering from a 2 days CPET.

 

[MeSci]

One day while walking to school with a schoolmate I didn't see a lamp post and smacked my head hard on it, luckily my friend helped me get to school, where I didn't even bother to ask to lay down at the infirmary.

I've many other episodes that now seem clearly caused by low BP.

Until a few years ago, before my ME came back in full force and I was diagnosed by Dr. Kogelnik, I was bradycardic, so regular doctors always assumed I was the perfect athlete ...

I've experienced visual disturbances that I now think are related to being hypotensive and I'm also peeing for England (or shall I say for Italy, while in the US). I've experienced severe polyuria at times of big crashes, I'm trying to work on it and I'm very interested in Rick's V K notes on it @Shushi .

I think it's not uncommon to walk into lamp posts! I'm sure it can be very painful (and embarrassing) though.

I get visual disturbances and have had severe polyuria - the volume is rarely over 3 litres a day (but I am small, so it would equate to 6 litres for a 100 kg person) but almost never have low BP.

 

[charlie1]

The tachycardia portion of my POTS has been helped with MESTINON this past year but now I'm dealing with a different autonomic issue... blood pressure drops with position changes. The MIDODRINE was supposed to help my low bp's but it did nothing for that and instead caused severe bradycardia (low 30's) so I need help other than what the neurologist is offering. So, since my last post on this thread, I went to a naturopath b/c my 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 never seen anythng like it b/c my O2 stats were 84 at the same time. I know that's b/c the vessels in my fingers were constricting in hopes of getting blood/O2 to my head and vital organs. I usually have good O2 stats (used to anyway)
These numbers are not good for my brain I already have cognitive impairment b/c of low pressures but this is getting crazy. I'm already doing all the self-help things and have tried the meds florinef and midodrine but no change.

I will post this in the "Hormone' section as well but b/c we've been talking low blood pressure, I'll ask you here -

My DHEA has been 'undetectable' at <.4 even before I became ill. I wonder if there is a relation to my PEM, low BP and lack of energy. Does anyone else have low DHEA as well as having super low BP's?

Thanks for any input.
Charlie

 

[Gingergrrl]

@charlie1 you said that you were helped by Mestinon for tachycardia & POTS and I had never heard of it before. I googled it and it said it is a drug for myasthenia gravis. Do you know why it was prescribed to you for POTS?