The Yorktest Labs website says it is but you've got to eat something after all. I always liked almond butter on oatcakes particularly but oats cause me trouble. As a former gardener, did you ever have a vegetable plot? That would be heaven.
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My visit with UK specialist who can diagnose MCAS
- Thread starter Allyb510
- Start date
The Yorktest Labs website says it is but you've got to eat something after all. I always liked almond butter on oatcakes particularly but oats cause me trouble. As a former gardener, did you ever have a vegetable plot? That would be heaven.
Thanks. I'll have to digest that article in stages Ryan as it will stretch my foggy brain's capacity to the limit. Well, I always suspected I might have had POTS because of the sickly dizziness and swaying on rising or when standing still, but then, because I usually had high blood pressure, I presumbed it wasn't a possibility. Is that what it's like for you?
Cheers, Ally
ryan31337
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Yup, that's my experience of it along with approx. 10% of POTS patients who fall into a stronger hyperadrenergic category according to some research. HyperPOTS patients are more likely to have frequent migraine, stomach pain, sweating, cold periphery. Where MCA is involved too I think its quite difficult to determine which is the dominant force, MCA or POTS, is one responsible for the other? Regardless they definitely don't play well together and perpetuate things :thumbdown:
Typically my horizontal/seated BP is around 135/80 daytime average, if I go below 120/70 I feel very hypotensive. When on my feet and active its often around 150/90. I'm a tall guy so maybe that's not massively unusual but I think it still reflects everything running a little hot.
During the tilt table it immediately jumped from 160/80 horizontal (bit of white coat hypertension!) to a 210/130 average with large beat-to-beat variability - basically one beat 240/140, next beat 180/120. I've seen big oscillations also referred to as a hyperadrenergic trait in literature. HR jumped by about 30bpm and then kept rising. I kept this up for 8 minutes until BP fell off a cliff, 91/58 when they put me down as I fainted. Once horizontal again my BP returned to practically the same elevated readings as when I was tilted and remained high for the 5 minutes they continued monitoring - this interested me and seems to fit with my experience that once I've overdone it orthostatically I am buggered for the next day or two, I can't just take a short rest and continue.
The same process happens when on my feet normally, just much less aggressively! In a standing test I could go for 40 minutes before my muscles fatigued and the faint happened. Suspect over the years I have trained quite effective muscle counter-maneuvers in legs/glutes, once they are out of the equation everything packs up pretty quick.
Oats also give me issues, worse than wheat - bloating, rumbly upset tummy.
Yes I grew vegetables - we had a small holding in the middle of nowhere with 10 acres of land and built an eco house on it. Sadly the work load got too much for us and last year we sold it and moved to a bungalow in the local small town. We now have a small garden, but already my husband has planted blackcurrant bushes and raspberry canes on the bank and we plan to turn an old concrete pond near the back door into a salad bed this year. We took one of the massive tractor tyres that were left behind on the smallholding when we bought it and that will be good for planting a courgette, a squash plant or potatoes into (all three work well in big tyres).
Then I plan a couple of raised beds and the retaining bank, which has concrete planters holding it up will be
filled with herbs ad strawberries.
@justy, a bit off topic but it just sounds great to have your own vegetables in your garden. But are you sure that the materials of the tyres are inert and that toxins aren´t released when raining e.g.? I my country people used the wooden "bars" used under railways in their gardens, and these were found to be extremely toxic after raining. The water then spread the toxins to the soil around. Tyres also contains a lot of toxins that people with multiple chemical sensitivities react to. Sorry, if this will cause you problems, but dangers to our health might be hidden everywhere.
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Oh no. What an awful experience Ryan! Frightening. I'm terrified of the tilt table test now. Is it absolutely necessary for diagnosing POTS?
I have a history of fainting too, admittedly not recently, since I usually lie down immediately whenever I feel dizziness coming on. And I don't go to the supermarket because I can't stand stationary in the queue for any length of time, plus the chemicals assault me.
Have you ever been prescribed beta-blockers for your irregular heart rate? I'm on bisoprolol and I've noticed positive and negative research with reference to its usage in POTS.
I take your point, will dealing with the MCAS help the POTS? Which was the chicken and which the egg? I wonder if there is DNA testing anywhere that would reveal both the POTS and MCAS? I think I'd rather put my hand in my pocket for that than undergo that torture...
It's sad that you had to sell but it must have been a relief in a way to get something more manageable. I've seen programmes about ways of maximising planting in a small garden and it's amazing what can be achieved, usually by growing upward. And if you manage to plant all that you're planning, I think you'll be doing well. There is absolutely nothing like the taste of freshly picked produce. (Don't forget to include the pea shoots though, for your diamine oxidase levels
ryan31337
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Tilt table is arguably the gold standard test but my POTS specialist feels 10 minutes Active Stand with beat-to-beat monitoring is enough. He only does tilt table if you have history of fainting (presumably to trigger syncope so he can see if it was initiated by heart or vascular etc.).
It was a bit rough but I actually gained a lot from the tilt test, it really put into context the sensations I would feel on a daily basis and helped me isolate what was what. I'm much more aware of things like the drive to over-breathe caused by POTS now and control that better.
Yes, I was on Bisoprolol for some time before getting onto Ivabradine. Bisoprolol certainly helped with the chest pain aspects of POTS, it also helped limit the heart rate a little. Unfortunately I was also experiencing significant bradycardia (<40bpm at rest) at the time so couldn't tolerate any more than a tiny dose (1.25mg daily).
Ivabradine is working better for me. Similar to Bisoprolol I have no chest pain and a little slower heart rate, but I also feel calmer than I did before, less tendency to feel rushed or pressured. Doctors would call it anxiety but for me there is no mental component, just the shaky/overstimulated, 'working against a deadline' adrenaline feeling.
Treating one will very likely improve the other. This is one proposed mechanism underlying POTS/MCAS:
Not aware of any common DNA testing for POTS/MCAS sadly, no.
@Allyb510
That's interesting
I had the same thing when I'd been started on oestrogen-based breast cancer treatments. They suppressed my ovarian oestrogen production with monthly Zoladex implant injections, then chemo more or less finished the job off. I was shoved chemically into early menopause.
Went with my insatiable craving for chick-peas and bought dozens upon dozens of cans every week. I'm normally not great with tinned food, but was too knackered to find and soak dried chick-peas, and the craving was too intense.
Ate bucket loads. Daily.
Some months later, I found out quite accidentally that chick-peas contain high levels of phyto-oestrogens
J
That's interesting
I had the same thing when I'd been started on oestrogen-based breast cancer treatments. They suppressed my ovarian oestrogen production with monthly Zoladex implant injections, then chemo more or less finished the job off. I was shoved chemically into early menopause.
Went with my insatiable craving for chick-peas and bought dozens upon dozens of cans every week. I'm normally not great with tinned food, but was too knackered to find and soak dried chick-peas, and the craving was too intense.
Ate bucket loads. Daily.
Some months later, I found out quite accidentally that chick-peas contain high levels of phyto-oestrogens
J
@ryan31337 - I'm sure you told me this before, but who did you see for POTS? was it private? After my appointment with Dr Croom, I think this and EDS are the next issues on the agenda.
The local NHS rheumy told me I had Hypermobility syndrome as I was walking out the door of the appointment, I asked her if this was EDS H, she said they were the same thing, handed me a leaflet on EDS and JHS and said she was discharging me. Funnily enough she also tested my Tryptase as she wondered if I had mast cell issues, but she didn't know enough about it to follow it up when the Tryptase was in range (ive had it done twice, both times non reactive it was 4 and 8)
Anyway, the letter she wrote to my Dr just said 'background of hypermobility' so my GP denies I have JHS or EDS.
The local NHS rheumy told me I had Hypermobility syndrome as I was walking out the door of the appointment, I asked her if this was EDS H, she said they were the same thing, handed me a leaflet on EDS and JHS and said she was discharging me. Funnily enough she also tested my Tryptase as she wondered if I had mast cell issues, but she didn't know enough about it to follow it up when the Tryptase was in range (ive had it done twice, both times non reactive it was 4 and 8)
Anyway, the letter she wrote to my Dr just said 'background of hypermobility' so my GP denies I have JHS or EDS.
ryan31337
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Hi @justy,
Private yes, but was then taken on as NHS patient for all testing, follow-up and prescriptions. I think that's ideal in our situation: only days to wait for initial appointment, a good hour to get the complex history across, then NHS testing booked straight away and completed within a 2-3 months. Plus you can self refer and cut any arguments with your GP out of the whole thing. I'll PM you his details.
I have the same acknowledgement of hypermobility disorder in my letters from him. I'm not classically hypermobile (low beighton score) and no dislocation, so I guess referring on is considered a waste of time? That and the fact he's already made me quite 'busy' by referring on to gastro, neuro, endo & derma colleagues!
Interesting about the jump in tryptase between tests - was it from the same lab? I recall proposed criteria by Valent et al. that stated an increase of 20% + 2ng/ml on a reaction sample over baseline sample could be indicative of MCAS.
Ryan
Private yes, but was then taken on as NHS patient for all testing, follow-up and prescriptions. I think that's ideal in our situation: only days to wait for initial appointment, a good hour to get the complex history across, then NHS testing booked straight away and completed within a 2-3 months. Plus you can self refer and cut any arguments with your GP out of the whole thing. I'll PM you his details.
I have the same acknowledgement of hypermobility disorder in my letters from him. I'm not classically hypermobile (low beighton score) and no dislocation, so I guess referring on is considered a waste of time? That and the fact he's already made me quite 'busy' by referring on to gastro, neuro, endo & derma colleagues!
Interesting about the jump in tryptase between tests - was it from the same lab? I recall proposed criteria by Valent et al. that stated an increase of 20% + 2ng/ml on a reaction sample over baseline sample could be indicative of MCAS.
Ryan
ahmo
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- Northcoast NSW, Australia
There's a non-phenol version. Directly from the mfg: http://algonot.com/
I've found Neuroprotek really useful for head-related symptoms. These days I generally take 1/day only.
Very interesting thread. Unfortunately I've got pretty poor concentration ATM. Ally, your list of symptoms (end pg 2) was very useful, as yesterday, when thinking of responding here, I couldn't even remember which of my symptoms seem to be mast cell.
But that's what I attribute my low BP to. I consider it "POTS-lite": not a 30 pt. drop when I stand, but at least 10, almost always. And I found that my experience of flushing and yuk feelings are accompanied by low BP. Here's an article which lists both MC and autoimmunity as relating to POTS. http://journals.lww.com/jaapa/Abstr...g_postural_orthostatic_tachycardia.99877.aspx
Somewhere in the last few days I saw reference to rutin for vascular health. I use it for antihistamine, which I haven't needed recently, but am now resuming it to maybe help improve BP. (Beware, some rutin is citrus based, which has histamine. I use NOW brand.)
My diet is extremely limited. No histamine foods. If I'm doing well, I'll have a spoonful of yogurt or skraut, but it's been a long time. A tiny sliver of dark chocloate.This summer I've been devouring watermelon. Aside from being good in the heat, it seems to help when I get the flushing BP drop. Flavanoids. Though I found a Mercola article talking about how it helps decrease BP.
http://www.whfoods.com/genpage.php?tname=foodspice&dbid=31
@Allyb510
That's interesting
I had the same thing when I'd been started on oestrogen-based breast cancer treatments. They suppressed my ovarian oestrogen production with monthly Zoladex implant injections, then chemo more or less finished the job off. I was shoved chemically into early menopause.
Went with my insatiable craving for chick-peas and bought dozens upon dozens of cans every week. I'm normally not great with tinned food, but was too knackered to find and soak dried chick-peas, and the craving was too intense.
Ate bucket loads. Daily.
Some months later, I found out quite accidentally that chick-peas contain high levels of phyto-oestrogens
J
@Jigsaw I'm glad to see it wasn't just me who was a crazy chick pea lady
! There are others of us out there. I could eat hummus, and chick peas in general, for Britain. I didn't realise they were loaded with phyto-oestrogens...maybe my body was trying to tell me something all along? I also went into the menopause early at 38 because of Lyme disease and my hormones have been abnormal for decades due to the Lyme. I very much hope you are keeping better now! Your experience sounds so harsh, I feel for you.
I'm ashamed to say I used to make my own hummus with tins of chick peas, olive oil, garlic and lemon juice. I would make a big batch and divide it into small portions, ostensibly for eating at a sensible, slow rate over a number of days. (Of course, I didn't realise I was affected by MCAS then and these leftovers were a huge no no. My histamine levels must have been through the roof.) Anyway, I would polish the lot off in a couple of days!
It all came crashing down though. I had a massive reaction and was forced to throw the chick peas and all the rest of my foods and supplements at the time, out of my diet. So mum was right...everything in moderation...
Is it your POTS doc who orchestrates your referrals to other specialists? My GP said she's referring me to a rheumatologist for my elevated inflammatory markers and, I could have sworn she said, that he would do the onward referrals to the endo for my thyroid issues and the gastro for the possible crohn's/ulcerative colitis. I suppose it might happen quicker if the consultant gets involved rather than the GP.
I agree the ability to self refer is invaluable. Do you have a generally supportive GP?
There's a non-phenol version. Directly from the mfg: http://algonot.com/
I've found Neuroprotek really useful for head-related symptoms. These days I generally take 1/day only.
Good to know @ahmo. I'm thinking of having a go with the non-phenol version to start with.
Very interesting thread. Unfortunately I've got pretty poor concentration ATM. Ally, your list of symptoms (end pg 2) was very useful, as yesterday, when thinking of responding here, I couldn't even remember which of my symptoms seem to be mast cell.
I totally get that. It's often hard to know which symptom to attribute to which condition as the symptoms overlap. Lyme, MCAS and POTS all cause neurological and cardiac problems. When a doc asks me to list the symptoms that bother me most I always have a hard time doing that and then I will leave something important out and be kicking myself. Luckily, Dr. Croom didn't mind that I emailed her briefly afterward.
http://journals.lww.com/jaapa/Abstr...g_postural_orthostatic_tachycardia.99877.aspx
Perfect. Will get stuck into that, foggy brain permitting.
Somewhere in the last few days I saw reference to rutin for vascular health. I use it for antihistamine, which I haven't needed recently, but am now resuming it to maybe help improve BP. (Beware, some rutin is citrus based, which has histamine. I use NOW brand.)
It's interesting that you've been able to do without an antihistamine up to now. Which one are you thinking of introducing? I would like to try the rutin as I've heard only good things about it. I'll remember the NOW brand as, sadly, I can't tolerate citrus.
My diet is extremely limited. No histamine foods. If I'm doing well, I'll have a spoonful of yogurt or skraut, but it's been a long time. A tiny sliver of dark chocloate.This summer I've been devouring watermelon. Aside from being good in the heat, it seems to help when I get the flushing BP drop. Flavanoids. Though I found a Mercola article talking about how it helps decrease BP.
Sounds like you're very careful with your diet. Have you tried DAOsin?
http://www.whfoods.com/genpage.php?tname=foodspice&dbid=31
I'll definitely have a go with the watermelon as it is a natural source of flavonoids. If it helps my high BP then that would be a bonus.
Cheers for all the top tips ;-)
ahmo
Senior Member
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@Allyb510 Not needing any antihistamine is relatively recent, I think. I never bothered w/ DAOsin because it just seemed like another complication, given that I 'm not eating socially, it's just easier to avoid things. I'm now using rutin again. I'd started early on w/ quercetin, but my body prefers rutin. I think quercetin has sulfur properties, which don't work for me.
My BP drops seem to always be in the evening. Or at least the most noticeable episodes. No fainting, just rapid onset heat, irritability, almost hyperventilating. I've noticed that since I started rutin AM/PM my BP still is low, but I haven't gotten the flushing..
Re overlapping symptoms, yes, indeed. I came across some EDS info the other dayand I'm now wondering if I'm showing signs of this, too. Recent unexplained pains in my hands, not in the bones or joints, and, suddenly, one little finger is pointing up at the end. I seem to have a range of symptoms that cross diagnoses. And none of them is likely severe enough that a doctor would attend to them. Just as well I'm now able to self-manage.
My BP drops seem to always be in the evening. Or at least the most noticeable episodes. No fainting, just rapid onset heat, irritability, almost hyperventilating. I've noticed that since I started rutin AM/PM my BP still is low, but I haven't gotten the flushing..
Re overlapping symptoms, yes, indeed. I came across some EDS info the other dayand I'm now wondering if I'm showing signs of this, too. Recent unexplained pains in my hands, not in the bones or joints, and, suddenly, one little finger is pointing up at the end. I seem to have a range of symptoms that cross diagnoses. And none of them is likely severe enough that a doctor would attend to them. Just as well I'm now able to self-manage.
@Jigsaw I'm glad to see it wasn't just me who was a crazy chick pea lady
I also went into the menopause early at 38 because of Lyme disease and my hormones have been abnormal for decades due to the Lyme. I very much hope you are keeping better now! Your experience sounds so harsh, I feel for you.
I'm ashamed to say I used to make my own hummus with tins of chick peas, olive oil, garlic and lemon juice. I would make a big batch and divide it into small portions, ostensibly for eating at a sensible, slow rate over a number of days. (Of course, I didn't realise I was affected by MCAS then and these leftovers were a huge no no. My histamine levels must have been through the roof.) Anyway, I would polish the lot off in a couple of days!
It all came crashing down though. I had a massive reaction and was forced to throw the chick peas and all the rest of my foods and supplements at the time, out of my diet. So mum was right...everything in moderation...
@Allyb510
Hi, rushing to get to Drs and feeling rubbish, but will reply more later.
Thank you for your reply
Yes, I reckon it's a desperate cry for oestrogen, a phyto-oest far less dangerous than animal oestrogen.I did EXACTLY the same re garlic etc! I didn't know about MCAS then still don't really, so am just as lost as before....... More later!
@Allyb510 Not needing any antihistamine is relatively recent, I think. I never bothered w/ DAOsin because it just seemed like another complication, given that I 'm not eating socially, it's just easier to avoid things. I'm now using rutin again. I'd started early on w/ quercetin, but my body prefers rutin. I think quercetin has sulfur properties, which don't work for me.
I might try DAOsin just to put it to bed once and for all, but I will definitely try NeuroProtek. It has both quercetin and rutin I think. Whatever I do, I'll try to change one variable at a time. Ahh, I never considered sulfur. Do you have impaired sulfur metabolism?
My BP drops seem to always be in the evening. Or at least the most noticeable episodes. No fainting, just rapid onset heat, irritability, almost hyperventilating. I've noticed that since I started rutin AM/PM my BP still is low, but I haven't gotten the flushing..
Have you ever investigated your adrenal or pituitary glands?
Re overlapping symptoms, yes, indeed. I came across some EDS info the other dayand I'm now wondering if I'm showing signs of this, too. Recent unexplained pains in my hands, not in the bones or joints, and, suddenly, one little finger is pointing up at the end.
Hmmm, if you feel you might have the symptoms then it would definitely be worth ruling EDS in or out. Is there a specialist in your area who is capable?
I seem to have a range of symptoms that cross diagnoses. And none of them is likely severe enough that a doctor would attend to them.
That's what makes it so difficult. A large number of less severe, but still bothersome, symptoms can add up to a poor quality of life. That's it in a nutshell.
Just as well I'm now able to self-manage.
Well, you've hit the nail on the head by talking about self-managing ahmo. It's a double-edged sword. Sometimes when I'm particularly unwell, I wish there was someone knowledgeable and powerful (a super doc) to step in and 'take care of me for a while'. Manage my health properly, not the way they do it in the UK. Hope that doesn't sound too weird. You know the way it was when you were a kid and you believed your parents knew everything? If they told you to take something, you would without question because you believed in them? Well I don't believe any doctor can manage our rare and poorly understood conditions better than we can. We alone know the symptoms we've had, the reactions we've had, the treatments we've had and our complete medical history. And we've done so much research, out of necessity, because nobody else would do it. So, really, we're forced to manage our own health. I suppose it does empower us but, on the other hand, if someone is sufficently unwell then they just don't have the physical and mental resources to do so and their health just suffers.