andybonse

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!

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

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?

Yeah, in fact earlier I felt like a bubble in my stomach and boom a Premature Junctional Contraction happened!

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.

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

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.

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!

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

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

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

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.

I always thought I may have cerebal hypoperfusion due to over vasoconstriction! Didn't know an EEG can prove this.

Modafinil is what my doctor recommended, but the risk of heart arrythmias put me off..lol

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. Sounds scary, don't want a stroke on top of this!!

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.

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.

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.

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?

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.

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!

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

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.

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.

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?