Sarah Tee
-
Posts
897 -
Joined
-
Last visited
Content Type
Profiles
Forums
Events
Resources
Physicians
Member Stories
Information Resources
Links
Posts posted by Sarah Tee
-
-
I suddenly thought how is it possible that I have low blood volume and high blood pressure.
My specialist thinks I have low blood volume, and there’s indirect evidence as well. And that’s been going on for about 20 years. BP was normal in those times.
But for the last five years, I’ve had high BP.
Is that even possible with low blood volume? Or is my blood pressure actually even higher and some of that is being disguised by the low blood volume?
-
I haven’t watched this lecture, but perhaps it has something useful:
-
@MikeO, bit of both, I think.
I will keeep trying with it though. Got to give it a chance and work up to a dose that might show some good effects.
-
I suddenly started feeling hot and a bit thirsty last night. I don’t usually feel hot unless the weather is warm or a heater is on. And I almost never feel thirsty. (Not one of my usual symptoms.) It’s winter here, no heater on and the window is open, so not sure what is going on.
Feeling hot and extra thirst aren’t listed as side effects so it’s probably a coincidence.
On the plus side, no GI problems.
-
This thread was helpful because I am giving pyrostigmine another try. The first time I took it, I felt generally unwell and also I think it upset my bowel. Can’t quite remember the details, just that I felt miserable for a week and dropped my iPad and cracked the screen. (It’s still working but I blame my specialist for the crack!)
I am starting very slowly this time, half of the dose he wrote on the prescription. Seems to be okay so far.
-
@Macho319, I don’t have this symptom, but a good percentage of people with POTS and other OI conditions do. It seems to get called dyspnea. I am sure a few people will chime in and describe how they experience it.
One option, if you haven’t explored it already, would be an assessment by a respiratory physiotherapist.
https://www.potsuk.org/managingpots/breathing-pattern-disorders-in-pots/
(There’s not much research done on non-POTS orthostatic intolerance so we usually have to look to POTS research.)
This article takes a different angle – gets a bit technical for me but it mentions low cardiac filling pressure.
Edit: Forgot to post link. Silly me.
-
You can estimate your blood volume and estimate how much you might be down by.
https://www.mdcalc.com/calc/4065/blood-volume-calculation
I can’t remember what the average percentage under is for people with POTS. It should be mentioned in this lecture:
I think, for an adult, 500mL would be the minimum worth bothering with, unless the person was quite small.
It might take a few sessions to find the right speed for you. Hope it helps!
-
@RecipeForDisaster, I was just re-reading this thread. 37%! Yikes!
The research I read had the control group losing an average of 2%, and the OI groups losing about 20%.
In the Australian support group that I’m in, a member with POTS mentioned getting a SPECT scan to check blood flow to her brain. It was done lying down, but still showed deficiencies to the frontal and parietal lobe. The deficiencies were mild but still considered evidence of impairment. It was done not for diagnostic purposes but to use in applying for disability/income assistance.
-
@Macho319, yes, reactive hypoglycemia is bit of a mystery, isn’t it. Another condition that almost no-one investigates sadly. At least you know what it is and have it on your records,
Did you know that you can have orthostatic intolerance type dysautonomia with a normal TTT? That’s my current diagnosis.
This article descibes one doctor who is looking a bit further:
It’s not necessarily that you should rush out and try to get a TTT with the transcranial Doppler addition, more just to know it exists. Although I have heard that Dr Novak has come up with some treatment ideas for OCHOS and HYCH.
Recently four other autonomic specialists got grants to buy the transcranial Doppler equipment:
-
Tae Chung, Johns Hopkins – has an interest in exercise rehabilitation
https://vimeo.com/483090164
-
Melissa Cortez, University of Utah – has an interest in headache and migraine
https://vimeo.com/359102751
-
Nate Robbins, Dartmouth Hitchcock – neurologist
https://www.dartmouth-hitchcock.org/findaprovider/provider/2145/Nathaniel-M-Robbins
-
Satish Raj, University of Calgary – cardiologist with lots of POTS research under his belt, frequent speaker at DI conferences
https://vimeo.com/589514511
Best of luck getting some help with it all. Sounds like you are making progress, even if it’s a long slog.
-
Tae Chung, Johns Hopkins – has an interest in exercise rehabilitation
-
@MikeO, I am glad he looked at your data and is investigating. Also now you have taught him that A1c is not necessarily the full story!
-
@Macho319, that’s good that you have got a high-tech monitor. I am not an expert on blood glucose, but I’m guessing a drop such as this is abnormal. Have any of your doctors had any thoughts on this?
Also, I forgot to ask, have you had any autonomic testing? Sounds like maybe this is your next stop, but perhaps one of the cardiologists did a tilt table test?
-
@Macho319, you mentioned your blood glucose falling after activity, such as having a shower. Is this measured with a meter?
The reason I ask is that I spent a long time thinking I was having trouble with my blood glucose, but when I got a meter I found out that my levels were normal and I was actually feeling presyncope. (At least that’s what we think – it’s hard to measure presyncope!)
-
Urgh, I am not looking forward to menopause. Nothing else in my life has affected my symptoms, so I’m guessing mine is going to be added on top.
-
I understand a bit more about how it works now. They take a blood test. Then you breathe in a tiny amount of carbon monoxide, which binds to red blood cells and acts as a “tracer”. Then they take another blood test.
The blood is analysed and the values entered into software, which calculates the hemoglobin mass.
Err, this is where my knowlege peters out. I do know they have tested it against the isotope version and in various other ways and shown that it gives accurate results (studies published in journals).
-
So, I have some interesting news. First, the medical version of the device has been approved for sale/use in Europe. A great first step.
Second, two researchers in Canada and the US have the device and are already working on studies with it! I won’t name them because the studies haven’t been announced formally yet, but will update as soon as I can. You will know the names/institutions.
(The original non-medical-certified version is fine for research purposes, sports science, etc. The certified version is for use in hospitals, treating patients.)
-
Thanks, @MikeO, I will mention that one too.
Edit: Just checked and it’s not generally available in Australia. You can apply for special permission but I don’t think I would qualify.
Never mind, if it does become available in the future I will try it!
-
I don’t know whether this is the explanation for what you have observed, but standing still is often more strenuous than walking for people with orthostatic intolerance disorders. (And for healthy people too, but they don’t usually notice it until they have been standing for a lot longer.)
When we walk, our body uses “muscle pumps” to help get a good blood flow and return blood from the legs to the heart. When we stand still, these muscle pumps aren’t as active, unless we know the tricks of shifting our weight from leg to leg and tensing and releasing the large leg and buttock muscles.
-
I guess this is a naive question, but is it legal to have people working such long shifts with only two ten-minute breaks?
In Australia, if you work eight hours, you must have two tea breaks (15 or 20 minutes) and a half-hour meal break. If you work more than eight hours, you must have two meal breaks.
People with POTS are advised to have frequent small meals, as well as rest breaks, and it seems your current job is unlikely to accommodate that.
Could you find a veterinary assistant job with more reasonable hours and proper meal breaks?
P.S. I don’t think your cardiologist appreciated how active your job is. If anything, you should be doing less exercise, and definitely different exercise. People with POTS are usually advised to start with supine exercise, then build up to seated exercise or perhaps swimming if that suits them, and finally upright exercise. There are special exercise programs for POTS that you can access (free PDFs). Definitely not squatting and standing, or holding difficult positions for long periods, or anything that makes you feel faint or start to black out. It’s not so much that fainting is dangerous, although it’s definitely something to be avoided, but the damage you might do to yourself if you faint and fall. Also, feeling faint or fainting is exhausting, so it’s counterproductive. The general idea is to exercise in a way that doesn’t make you feel faint, and to gradually build up, alongside lifestyle measures and often with support from medications.
Here’s some lectures that might be helpful:
-
@Tosha Blackburn, welcome to the forum. Sorry to hear you have POTS, but glad to hear you have been diagnosed. I hope you can make some progress treating and managing your symptoms now you have that information.
This forum is a great resource. Feel free to ask questions or talk about your frustrations.
-
I am a bit worried it may be too hard for me to manage though. And I am a bit unsure of my current specialist. My previous one was a clinical pharmacologist – maybe I need to go back to him?
QuoteI would like to add a strong note of caution to the use of desmopressin. This drug can effectively raise blood volume and constrict blood vessels, which can be helpful in managing orthostatic intolerance syndromes. But desmopressin must be monitored carefully by a skilled physician, with lab tests, because inappropriate or poor management can result in severe medical consequences, including life-threatening hyponatremia, fluid overload, and hypertension.
Quote from Dr Lucinda Bateman
https://www.healthrising.org/treating-chronic-fatigue-syndrome/drugs/desmopressin-ddavp/
-
I suddenly remembered that I haven’t tried desmopressin and am going to ask my specialist about it.
I have read that there are monitoring requirements (blood test) and you have to do watch your fluid and salt intake.
Can anyone tell me a bit more about this, or point me to a resouce about it specific to dysautonomia?
I am finally getting in to a local(ish) GP clinic in June, so my new GP will be able to order blood tests and keep an eye on me in person, which is good.
-
Do these episodes tend to happen when you are standing up or exerting yourself, e.g. shopping trip? If so, they could be presyncope. It can cause a lot of symptoms beyond just lightheadedness, including a feeling of disconnection and the world seeming to fade away (sound and/or vision) as the person is on the edge of losing consciousness.
As you say, the only way to tell for sure if they are seizures or not would be to catch one on an EEG. I hope your new neurologist will be more helpful on this.
Brain fog isn’t very well defined, but it is usually described as having difficulty thinking clearly and remembering things. Some people also mention getting mentally tired and frustrated easily. Technically it might be called a cognitive deficit.
Here’s one study that tried to investigate it:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4161607/
For me, brain fog includes a loss of executive function, difficulty paying attention, and a short fuse. I also struggle to find the right word (or any word!) and have difficulty processing speech if there is distortion or background noise. Learning new things is hard, although this could be related to poor sleep quality.
(I don’t have POTS but my specialist says I have low blood volume and low blood supply to the brain.)
-
@Derek1987, I’m so sorry to hear you are going through this. I don’t have anything to add to what other people have said about symptoms after eating.
But I just wanted to say that I also have times when I feel absolutely shocking, but with no specific symptoms I could name. Like you say, it’s hard to put into words. It’s not pain, not nausea, not fever. All I can say is that I feel horrendous.
I do hope you can get some help and this passes soon.
-
It seems that if you are in the US, the best place to look for assistance with octreotide would be to look at Dr Robert D Hoeldtke’s work. He may be retired now. You could also seek advice from collaborators on his studies or from the centres where he used to work. Or just get yourself to one of the big autonomic centres.
I notice Dr Grubb mentions it in one of his lectures, but I’m not sure whether that means he personally prescribes it.
If you are in the UK, and your specialist can’t prescribe it, ask them to try the Countess of Chester Hospital and Dr Muhammad Khan or his colleagues (listed on the case studies).
If you are in Australia, I don’t know where to look. Ask your specialist to contact other specialists and ask them, I guess. Or ask your specialist to team up with an endocrinologist (they are the ones who use it most often for other conditions).
Low blood volume and high blood pressure
in Dysautonomia Discussion
Posted
@MikeO, @MomtoGiuliana, thank you, that makes sense!
I was just having a sudden crisis about this because I’m starting with a new GP.
I really wish I had measured my blood pressure before and after having IV albumin. They took my obs at the hospital, but my blood pressure was always high because getting there and being there was a big hassle (even though the staff were very good).
In the old days, my OI symptoms would go away later in the day, so I could have measured it then too. (It lasts pretty much all day now.)
And I could have checked it when I was on prednisolone and feeling normal too. Argh. Although prednisolone can raise your BP.
So many missed opportunities to see if it goes down when I’m revolumised or asymptomatic.
Regardless, am going to ask new GP to test me for Conn’s syndrome. Apparently it’s quite common and my high BP may not be from dysautonomia (it started about ten years in).