andybonse
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Posts posted by andybonse
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Hey,
I am just lightheaded ALL the time to at least some extent. From when I first get up right over the course of the day it gets worse and worse. To the point when I lay down it helps but I'm still lightheaded for ages.
My blood pressure is always perfect and heart rate can even be 60 lol.
Cerebral Over Vasoconstriction?
Nothing seems to really help, except waiting it out, or sometimes eating a large meal!?! - Not blood sugars, already checked all that with my little kit! :).
Anyone else feel like this?
I was on florinef which was helping my heart rate symptoms and lightheadedness was reduced, but still got lightheaded with a hr of 60 bp 120/70 and laid down!!
It's my worse symptom it's just like I'm not here and lightheaded, NOT DIZZY. I can feel everything change in the brain like the bloodflow its hard to describe.
I am seeing a specialist again tomorrow to check more on autoimmune cause but wanted to see what other people said!
- Andy
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On 10/22/2018 at 11:15 AM, Pistol said:
Here is a curious observation I made: when my POTS symptoms are bad I always urinate excessively. When I get IV fluids this stops and I urinate a lot less, more like a normal person. So: does the increased urination cause the POTS to worsen or does the POTS cause the increased urination? … Also: in "normal" people IV fluids would cause increased urination - why is it opposite in POTS patients?
I just found an article about polyuria ( excessive urination ) that lists POTS as a primary reason for polyuria!!!!
I get this excessive urination too when my pots symptom is worse, weird huh.
Anyways, sometimes the longer im upright ill get more light headed and more and swing both ways lower and higher bps. Do you ever get it when you lay down you are still lightheaded? I am thinking its due to over constriction of the blood vessels in the brain etc?
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8 hours ago, peachychou123 said:
Do you have any kind of GI or reflux issues? The vasovagal nerve is sensitive in many POTS patients and when stimulated it can trigger these palpitations.
Yeah, in fact earlier I felt like a bubble in my stomach and boom a Premature Junctional Contraction happened!
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6 hours ago, bombsh3ll said:
Hi Andy I get a lot of these too. Harmless but uncomfortable and worrying at the time when you're getting them frequently.
I find that keeping my potassium in the upper end of normal range helps ie over 4 and preferably over 4.5, also supplementing magnesium helps.
I don't tolerate beta blockers due to resting bradycardia and chronic presyncope (beta blockers decrease cardiac output and cerebral blood flow even in healthy people) however many people can tolerate these at least in small doses and find them helpful.
B x
Are yours MultiFocal? I also get Premature Junctional Contractions (basically a type of PAC). I can't take betablockers as my low resting HR too and probably would make my pots worse unfortunately. My potassium is about 4.5 and I take magnesium, I think I need a better type though lol.
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Hey,
Does anyone get Multifocal PVCS? If so what tests have you had and what did the doc say?
I've had a completely normal echocardiogram, ecg, 24 hour ecg(bar from pacs and pvcs).
Just worried that I have multifocal and it seems more worse? I only have 10-20 per day but still feels horrid.
Andy
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5 hours ago, bombsh3ll said:
I did, (when I was well of course). I'm a GP. It hasn't really helped me other than being able to identify my diagnoses and then pursue formal recognition of them, and safely access first line oral medication myself.
I would love to know where she got that. Prof Matthias' clinic informed me outright that he doesn't treat with IV fluids
It's not close, I am in Scotland but please give me the details all the same, it would not be the first or last time I've had to travel to London.
Ice cold hand or frozen veg to back of neck & breathing in deeply through nostrils (same principle as impedence threshold device, increases preload) help me marginally.
B x
If I breathe in and hold it, I suddenly feel a lot better. I was just laid down because I feel light headed and nothing helped so just got back up lol. It's gotta be vasoconstriction I can feel it if that makes sense when I lay down I feel a pressure in my head a little and it feels like it needs to open up and let the blood distribute.
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2 hours ago, Pistol said:
@bombsh3ll - once I get this bad it is difficult to stop. Sometimes retreating into a dark, quiet room and lying down helps. Medications do not help for these flares, but I take a ton to prevent them. I take diltiazem, carvelidod and guanfacine for the BP and HR, Ritalin for brain fog and Lexapro, these are my POTS meds. But when I get the above symptoms and cannot stop them then I have to get IV fluids. That fixes everything for me. ( I am getting a port next week and will be able to get fluids at home ). I know that you are having trouble getting them in the UK but if you find someone to order them you would be surprised how good they work!!!! --- Regarding the Ritalin - I thought this myself before starting it but it really works and I have no side effects. My specialist - Dr Grubb - wanted me to go on modafinil but my insurance does not cover that.
While I was waiting to see my autonomic specialist there was a girl waiting to see him too, she had a PIC line, so I assume POTS and somehow got the saline maybe here in the UK!
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18 hours ago, bombsh3ll said:
I have no way of knowing for sure if I have cerebral vasoconstriction, but my symptoms are constant lightheadedness even sitting with normal BP/HR, chronic headaches which I attribute to hypoperfusion, and presyncope when standing. I however do feel better (but not perfect) lying down.
I will ask about the autoimmunity research when there. I have EDS as well (hypermomobility type) but this was only diagnosed after and because of POTS. Otherwise I would have just accepted that I have "poor collagen" as I was not disabled in any way by it prior to POTS. I was worried they would just attribute it solely to EDS in my case and not look for anything else. I don't believe it is just due to lax vessels as it came on suddenly after a forceful valsalva. Surely venous laxity would develop insidiously?
May I ask how/where you got your blood centrifuged to send off to Cell Trend?
Thanks for all the helpful info,
B x
The constant light headedness is like me I'll be sat with a 120/70 HR 62 and feel awful lightheadedness, it's the worst. I can't think and when people are talking or sounds from tv etc really scramble my brain! Even when I lay down, yeah I get a nice relief but I'm still lightheaded and nausea, I do find that eating a large meal makes it go away for a while, strange?
Does gulping water, squeezing something or sneezing make you feel better at all for a very small amount of time?
I went to get a blood draw from someone private in her own home, she is a trained phlebotomist, it was £60. She also centrifuged it there and then. It is in a place called Henley on Thames, I can get you her info if it's close to you?
See, I used to have ice cold hands, be very pale etc and that's when the midodrine made me worse in my brain and tingling in the hands, so I know it was vasoconstriction, but it's not constant, I think I bounce between dilated and constricted in the brain so only getting to the root cause will make me better as if I use a constrictor when I swing the other way ill feel even worse and the other way! So complicated!
Fludrocortisone really really controlled my heart rate, but I still had god awful light headedness, so increasing BP doesn't increase the flow to the brain and over constriction would make 100% sense in my opinion that way, because if it was dilation then more blood would be arriving at the brain and reducing symptoms!
It's nice to find someone who is trying to learn all this and be their own advocate as no other doctor has a clue! I even bought Primer on the autonomic nervous system book, it's fantastic but a lot of it blows my mind, I wish I was well enough to study medicine!
Andy
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7 hours ago, bombsh3ll said:
Wow that is great!!! Do you mean the autonomic unit at UCLH? That's where I'm going in 3 weeks. I am amazed there is someone in the UK taking autoimmunity seriosly as a cause. I had planned to ask them myself about doing the celltrend testing, but my concern about this was even if clear positive results came up, I doubted anyone in the UK would be interested or willing to treat it.
B x
Yes I the UCLH! I've been before for a tilt test and other autonomic stuff it's quite good! I agree, we don't seem to have much of a research field in the UK which sucks! With your over cerebral vasoconstriction, what are your symptoms? I mean I lay down with a normal blood pressure and HR when I am light headed and I am still light headed!
Andy
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3 hours ago, bombsh3ll said:
For numerous reasons women tend to fare more poorly than men in healthcare when it comes to erroneous psychological diagnoses, being seen as "neurotic" or "hysterical". Prof Newton shared her thoughts with me on why POTS & related conditions receive so little interest & research funding, & it had to do with the demographic typically affected. I'm glad this was not your experience though and am still very interested in going there.
Please do! Have you ever had or been offered a transcranial doppler to assess cerebral blood flow? I was told his clinic has that facility. Also do you pay to see him and how much is it, if you don't mind sharing? Hope the appointment went well.
B x
I see, that's really a shame. I'd of never of thought anything like that!
I've not been offered a transcranial doppler(I will ask for it at my further appointments), however today was fantastic. I am being referred to the autonomic unit, a doctor who Prof Mathias has trained and worked with who is very well into this illness, she is currently researching autoimmunity and antibodies, specifically MC3 Receptor Antibodies, of which I did a Celltrend Antibody test and was positive for 6 out of 11, so he was hoping I could see her in regards to being involved in the research I think and possible treatments like IVIG, so that's a HUGE step for me, this will probably include some autonomic tests as well further than what I've had.
I mentioned to him, how can I be light headed with perfect heart rate and BP when I'm sat down or even laid down and the first thing he said is the cerebral blood vessels can over constrict, bingo, would definitely make sense, especially when I felt like this and tried Midodrine I felt awful!
Also for my all over muscle twitches, rather than assuming it's just POTS, he is referring me for an EMG to see if anything is going on there.
I'd say that's the best appointment I've ever had! He's a fantastic doctor in my opinion!
Andy
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On 8/31/2018 at 3:07 PM, bombsh3ll said:
Do you pay to see him privately and if so how do you rate him? Is it very expensive to see him and have tests there? I was pointed his way by another clinic when I enquired about getting a transcranial doppler to assess cerebral blood flow - apparently he has access to TCD. I have considered making an appointment with him but been put off by others' experiences. One lady paid over £300 for an hour and he spent most of it asking about her marriage/divorce as if implying her problems were psychological. I would really like to hear an up to date perspective on Prof Mathias. I have an appointment at UCLH in 4 weeks and want to have an idea of other options in case I get nowhere there.
Do let us know what the stimulant drug is and if it works (if you try it)!
That's so good to know! I don't have a formal classification as "hyperadrenergic" as I've never had supine-upright catecholamines drawn - on the NHS you are extremely lucky if you get even a basic tilt or stand test and luckier still if the person interpreting it has heard of POTS and isn't just looking for BP drops or arrhythmia - but based on my symptoms and hypertension I "feel" as though I am hyperadrenergic. The hyperadrenergic state could however be secondary to volume depletion. I tried to get my blood volume measured but technical problems spoiled the test so I didn't get a meaningful result.
I wonder if/how ritalin would help me given that I already seem very vasoconstricted - cold pale extremities, no veins etc. Specifically how does it help you? I am looking for increased cerebral blood flow ie not to be presyncopal all the time, and to be able to stand up (or at least be able to sit upright comfortably without lightheadedness and headache). I am really interested in trying all options. I tried midodrine but it wasn't a good fit - higher BP (which I don't need), still presyncopal and squashed my heart rate.
Did you try midodrine before ritalin? I am trying to work out if it would help someone who didn't do well with midodrine.
B x
That's strange as he's always been well into the medicine side of things with me, he does try to get to know you which I think is fantastic for a doctor, I just can't imagine him sat there for an hour talking about someones divorce lol. - I am seeing him tomorrow, so will keep you up dated.
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On 8/31/2018 at 8:32 PM, Pistol said:
@bombsh3ll - yes, I did try midodrine and it was not for me. I tried also pyridostigmine, several BB's, … the Ritalin was prescribed for me because of severe fatigue and brain fog. I have vasoconstriction that leads to - proven on EEG - cerebral hypoperfusion resulting in syncope and seizures. When I collapse or seize usually my HR and BP go up severely. I also take guanfacine and it helps with both - HTN as well as cognitive issues. I have ADHD due to hyperadrenergic POTS. I also was just diagnosed with gastroparesis - which usually is from the parasympathetic dysfunction rather sympathetic. I take about 12 different meds. But the Ritalin does help, although I only take it in the am b/c if I take it past 3 pm I cannot sleep from it.
I always thought I may have cerebal hypoperfusion due to over vasoconstriction! Didn't know an EEG can prove this.
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2 minutes ago, Pistol said:
Bomsh3ll - I am hyperadrenergic and take Ritalin with good results. My sister is hyperadrenergic as well and does wonderful with Modafinil.
Modafinil is what my doctor recommended, but the risk of heart arrythmias put me off..lol
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2 hours ago, bombsh3ll said:
How and where did you get your noradrenaline levels tested in the UK? I would really like to get mine checked. I feel mine are high and although I feel presyncopal all the time my BP is actually on the high side not low. I have had two normal urinary catecholamine collections to exclude phaeochromocytoma, but would like plasma levels checked.
Good luck with the droxidopa if you get it. Another possible option is ritalin. I've considered it but it may not be the best fit for me if I'm hyperadrenergic.
B x
Prof Mathias in London arranged the tests at their autonomic lab, they did it while they did the TTT. They take the blood while your supine and then upright, so pretty simple test to do!
Yeah, I'm lightheaded all the time now, it's getting me down I just feel rubbish all the time, can't think because of it etc. Prof Mathias did mention a stimulant drug, forgot the name, I'll discuss it with him again.
4 hours ago, KiminOrlando said:I'm not a doctor, so I defer to their expertise. I can only tell you what happened to me and the theory as to why. Northera is also known as Droxydopa. Droxydopa converts to norepinephrine (my understanding). My natural norepinephrine was low, but not terribly low. They thought my receptors were damaged (example- only catching 25% of the norepinephrine tossed their way). The fix was to throw more norepinephrine so that even with it catching only 25% the actual amount went up. It started ok. I got up to 300mg (max is 600mg), but instead of staying steady, I would spike a BP for 15 minutes that was at stroke level. It wasn't every day, but it was enough that they decided not to play with it. They retested my norepinephrine and it was high, so they know for a fact the Droxydopa impacted my norepinephrine levels. In me they found that there was a variable they couldn't account for. Did my body start making more norepinephrine in addition to converting the Droxydopa? Does my norepinephrine level go up and down randomly so Northera dosing is impossible? Did Northera do something to my receptors to make them start to work better?
I would encourage you to get a good BP machine and a notebook to write your numbers down. I checked it in bed, sitting, and standing, three times a day every day and logged how I felt and what I had been doing that day. If I started having episodes or weird symptoms, I checked BP and logged it too. Most likely this log will be something your doctor can use to justify further treatment and let them know when it is safe to increase dosage or when you have attained the correct levels.
I'm glad I tried Northera even though it didn't end up working for me. I hope you have great luck with it.
Sounds scary, don't want a stroke on top of this!!
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I see! What sort of problems? Just Higher BP ?
My receptors are most likely fine, I have recently done some antibody tests that relate to POTS and had 6 positive so something autoimmune is definitely going on with me I think.
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I believe it is of normal levels it me, but I think it will help as it will increase the levels which should increase bp? I think!
I am in the UK, so cost is not a problem, we are very lucky with the NHS!!
Would be nice not to feel lightheaded almost constantly, I could up my florinef after it stopped working, but worrying about potassium levels and getting sick and having to worry about potassium levels, hmm feel better and worry 24/7 or dont worry but feel crappy. Ugh.
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Hey,
So as most of my symptoms correlate with low blood pressure even though my numbers are perfect I'm going to ask to try droxidopa.
Anyone tried it/ on it? Experiences?
I tried Midodrine, but made me worse in my head so want something that's not directly globally vasoconstricting.
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12 hours ago, outofadream said:
Hi andybonse, I started with all over tiny muscle twitches a few years back too. Same story with normal electrolytes. The neurologist diagnosed it as being benign fasciculation syndrome in my case. I've always wondered too about how it connects with the autonomic issues though (my neurologist at the time knew very little about POTS and couldn't weigh in on any potential connection). The twitches started years after the POTS symptoms began for me, but the POTS was having a real nasty flare at the exact same time the twitching started. I do think sometimes the twitches are a bit better when blood flow is better, and they're always REALLY active just after doing physical activity like exercising. They certainly are annoying and tiring, sorry you're having to deal with that on top of all the other struggles!
Yeah I actually read about BFS and can imagine it's that or at least related to the POTS. Some days it's not too bad, then it can be so annoying. All my POTS symptoms are worse so I really think it is that, I may up my florinef soon, but I want to see if I can try something else as I'm always worrying about my potassium on florinef.
I also get PVCS in my heart, so when I'm twitching all over and I get one, I panic and think oh no my potassium is low or whatever, then the blood comes back and it's all perfect lol.
I'm seeing my autonomic neurologist next week so will press for some answers, maybe an EMG, did you have one?
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I also had the celltrend tests and am positive for 6 out of 11. AT1R is one of them, so I'm also pushing for IVIG or SCIG in the UK. Gonna be hard but we will see! What were your results? Mine was 60 so was really positive.
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Adrenalin is out of you within 10 mins, it's the only way to stop an allergic reaction unfortunately in an anaphalyaxis attack! Speak to your doc about concerns as I've thought this one to myself before!
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Hey,
For the last 6 months I've had little muscle twitches in nearly every place in my body, they are daily one minute my leg then will be my stomach or back or head some where. It's sooo irritating.
All electrolytes including magnesium tested and normal.
I briefly remember having them 2-3 years back and when I started florinef and my POTS got betterer they went away. But now florinef isn't controlling my pots as well they are back. So I am assuming it's related some how, over active nervous system or blood flow maybe?
Anyone else?
Andy
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Seems to be. When my POTS is worse I get them. Florinef got rid of them then it stopped working and bam, they are back!
All electrolytes and bloods perfect so it's not that in me.
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I did the celltrend test and am positive for 6 out of 11 antibodies. Quite high on some of them too.
Trying to move forward and seeing my pots specialist soon.
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Hey,
Has anyone been on Florinef for so long and it stopped working? I've been on it 3-4 years and it's gradually got down to the point where my symptoms are back to how they used to be.
My sodium was 144, potassium 3.1 and aldosterone 108 when it was working, now sodium is 139, potassium 4.4 and Aldosterone 270. All indicating florinef isn't doing as much?
Maybe it's because I switched from the fridge version to the out of fridge version?
I just don't get it, can it stop working? The body get used to it?
CSF leak?
in Dysautonomia Discussion
Posted
I am curious of something like this going on, I always get a pressure at the top and center of my brain and it feels like it moves slightly like its getting tighter and lightheaded that isnt relieved by laying down! I myself didnt know i had EDS until the POTS my EDS symptoms are nothing hardly luckily lol.
I don't agree with the lax blood vessels, it seems to simple and if this were the case laying down should essentially fix all problems as everything is working mostly, have you seen any studies on this at all? My skin isn't stretchy and joints not really bendy so I can only assume the vessels would be ok too.
I wish to find a cause to my symptoms not relived by being supine too!