andybonse

Hey all,Just got my celltrend blood test results back and I am positive for 6 out of 11 tests.Anti AT1R Antibodies <10.0 U/ml: negative 10.0 – 17.0 U/ml: at risk > 17.0 U/ml: positive 59.4 (positive)Anti ETAR Antibodies <10.0 U/ml: negative 10.0 – 17.0 U/ml: at risk > 17.0 U/ml: positive 60.7 (positive)Anti a-1- adrenergic Antibodies <7.0 U/ml: negative > 7.0 U/ml: positive 11.4 (positive)anti-Muscarinic Cholinergic Receptor 2 - Antibodies <9.0 U/ml: negative > 9.0 U/ml: positive 18.2 (positive)anti-Muscarinic Cholinergic Receptor 3 - Antibodies <6.0 U/ml: negative 6.0 – 10.0 U/ml: at risk > 10.0 U/ml: positive 16.3 (positive)anti-Muscarinic Cholinergic Receptor 4 - Antibodies <5.0 U/ml: negative 5.0 – 7.0 U/ml: at risk > 7.0 U/ml: positive 47.6 (positive)Very pleased that I have something solid and evidence to my dysautonomia and CFS symptoms. My next step, no idea exactly but trying to get to see a specialist in autoimmune diseases and possible talk about IVIG.Wow, so many answers could be answered from such a simple set of tests.- Andy

Hey all, I started fludrocortisone about 3 years ago now, went slowly up to 0.05 to 0.075 as it dropped my potassium to 3.0, I am on 12 sando k potassiums which held it at 3.5!!! Lately, I feel a lot worse symptoms like I used to, I am now on 0.1mg florinef but with great potassium levels of 4.2+- with the same potassium dosage! I'm thinking, my body has slowly shut down it's own aldosterone production and the 0.1mg is holding it at what it would be naturally, so I need more to get back to feeling better, would this make sense/ do you agree? It would explain in my opinion the symptom worsening plus rising potassium levels.

Hey, My BP is always around 120/70-150/80 when standing/sitting. Laying 114/60 literally perfect in text books. Heart rate is 50-70 usually unless doing things, walking around etc. I've found my symptoms don't match with my numbers. I've found that when I have a cigarette which is only now and again, I feel my head becomes 'normal' not light headed, not dizzy just...nice lol like really normal. I'm thinking its the nictotine causing increased blood flow due to vasoconstriction, however Midodrine makes me worse! I think Midodrine constricts brain blood vessels in me making it worse. I was thinking of getting a e-cig/vape to try it out, I don't want to smoke and hate it, just usually have one if I had a beer or two! In my opinion it would be a safe, way of making me feel better if nothing else seems to be working. Anyone else found this? Andy

I had 2 episodes of what I believe to be that. Lasted like 5-10 seconds and I jumped up and it went away. Had heart tested so much too. - Triggers when im lower on florinef, either way everything of mine started when my pots got worse.

When I get light headed or feel weird I push my stomach in tight with my hands and the light headedness goes away nearly and I can think better, so yup deffo does something lol. I'm looking for an abdominal binder to try, there is also a drug called octreotide that pushes blood from the stomach organs back up etc but I try not to be on drugs as much as possible!

Hey guys! Been a while since I posted! How is everyone? :-). If you remember reading my posts about alcohol helping my symptoms, I've figured out why. Fludorcortisone nearly 1 pill was causing me to have a very tight head/lighteaded not here feeling a lot of the time. When I drank alcohol, this went away and I felt great! So, I went down on the fludrocortisone to half a pill and poof, my head feels SO MUCH BETTER! So I believe the alcohol was having a diretic effect of losing water and salt thus working against fludrocortisone in the way it was causing that symptom! The only good thing is, fludrocortisone stops me feeling light headed in a lower bp way, even though my bp is always normal or higher and it controls my heart rate. But I can't live with that head feeling, it was horrible. Plus it was dropping my potassium. An Endocrinologist said my aldosterone was low too due to the Fludro which was a sign I was overdoing it! Such a low dose too, weird. I always have said my body was retaining salt and fluids on its own when up right so add florinef to the mix and its double trouble LOL. Anyways, it's left me having to up my dose again on the florinef as my tachycardia and hard beating heart has returned, mainly after eating a large meal or when hot. Plus, PACS and PVCS are worse on lower doses of fludro, I'm not sure why? Maybe a higher sympathetic thing going on to try keep things normal. One thing that scared me, the other day. I had around 6-10 PACS in a row, which I've NEVER had which really shook me up, I didn't catch it on my handeld ECG, but I know my PACS from my PVCS by the feelings. Maybe a run of SVT, weird. I've had so many heart tests so I know it's not dangerous, or I hope not. Some good news, I was well enough to go to London and see Prof Hakim and get diagnosed officially with EDS type 3, woo! I was worrying about the vascular type and he reassured me I don't have any sign or symptom of it and he'd bet me £1 million I don't lol. So that's a positive! Also, my breathing is still good in comparison to how it was before. Question for people with breathing issues: Does it get worse when your driving or in a car? - I believe the motion moves the blood against gravity which causes mine to get worse! Future plans from here out: Stay off of alcohol for a few months(heal that liver lol), I was getting addicted, especially since it was making me feel better. It just took an extra few drinks to wake up the next day and feel like I was literally ready to curl over and die! Get my fludrocortisone back to a tolerable level to control the HR Exercise more Return to drinking alcohol in a small amount when everything is controlled once per week maximum as I enjoy it with the partner. Hope they find the cause with this research soon!!!! For all our sakes! Andy :-)

I was worried about my tooth out, I had the first appointment, they gave me Mepivicaine and I could feel the drill etc. Got referred to the hospital and she did the lidocaine with adrenalin, she injected it so slow and made sure she didnt hit a blood vessel and numbed me up and drilled through with no pain and EDS can make people resistant to locals apparantly, but she did it and it worked. I guess its finding a real professional with experience. But seriously, she got it out and I was prolonging it and having nightmares for ages. and nows its out no problems.

How many of you guys get PVCs & PACS daily? Told there normal & Benign? Just curious as mine all started when my POTS got bad and diagnosed, I think its due to the heart and nervous system speeding up and down in less than a second and it like trips the heart up at whatever point it is during its electrical conduction. So as it's still probably benign it doesn't feel benign! LOL. And for people who do, do you also smoke / vape? Does it make them worse? Mine happens more when I go lower on my florinef, so its obvious to me its linked to the POTS stuff. Heart tests are always 100% normal. Worst when it happens when your in a shop, or out with friends or a resteraunt etc, you go all funny and don't want people to know lol, and then the fear of it happening in these circumstances! Man, I'm lucky I got over been house bound and for florinef making me able to go about most normal daily things, but im never right, light headed, feel weird, heart stuff / pvcs lol. But I feel like im lucky to be able to do this stuff. Even drink alcohol when im higher on florinef, im lower on it at the moment and had some alcohol so think that caused my little spark tonight lol! I gained 3 stone in weight since getting back to more normal stuff so am now on a healthy diet, I also drank ALOT the last year as it made me feel better. So i'm basically having 7-10 fruit & veges per day in a smoothie, multi vitamin, fish oil, vitamin d3. Exercise starts next week. So I'm on a health run, alcohol limited to once per week. On the positive side, I have been making money online now for over a long time as I cant work, I hated replying on benefits and took action in that way! Worried about my son, he goes extremely red on skin after touching holidng etc, hes pale. He has EDS. I KNOW it. I can see some veins. You just know as a parent. Im terrified he will get it but if hes like me he will deal with it but feel guilty I have created someone who has a high chance of this crappy condition :/ and what about me I cant take him holidays abroad and other stuff.. Mah, hows everyone else? The UK is sucky atm, was really hot and I coped as the florinef was up and got myself a tan dont look like a vampire now lol! I guess this post is about PVCS and PACS and also other stuff haha Im not all with it right now! Andy

I get this and when on florinef it rarely happens, it kind of goes into the chest too in a way but yeah I think its probably due to lower blood flow to the muscles and tissues and makes them feel that way possibly

Doesnt sound like angina and the vein spasm is probably a tendon or muscle spasm as its probably not possible to feel a vessel contract or dilate!! always check with your doc tho a lot of our hearts go slow and in a lot of cases is normal, always get checked. angina related to the heart which I get when upright in heat and not on florinef radiates down the arm, gets worse with exertion and mine resolves by lying down to restore blood flow! feel better soon!

Same started happening to me mate, hr would go to 100 laid down normally its 50-60 and then if I stood to pee or whatever it would shoot to 150-170 and id get angina, and took a few days to go back to normal laid in bed! mine mostly happened if I got scared or something triggered it off. since been upright more and on florinef I haven't had an episode of that for 2+ years!!

At first, my issues were POTs. Now I can be standing with a perfectly health hr of like 60-70 and BP 120/70 and feel awful, it doesn't make sense in some ways aha! I find symptoms also sitting and laying, so I assume its more a dysautonomia than just POTS. Same boat as you, it *****.

50-60 is my normal resting HR, I checked a holter I had years ago when I felt fine and it was the same range as my latest holter so I don't think it's that causing issues and I went to a cardio who said it's just a number so who knows :(. My Hr is 50 now, but I feel not too bad like earlier, my heart rate doesn't seem to correlate with symptoms usually.

Hey, I'm feeling really light headed sat here, heart rate 53 and Bp 120/67 perfect right? woo. not feel rubbish lol. But then I started drinking my water and I feel better while im swalloing continously, then I stop and put the glass back down and the light headedness comes back! Something to do with vagus nerve maybe? Anyone have this? It would be great if I could contiunously drink water lmao!

Hey man, I'm from the UK and the same with me I think I have too much vasoconstriction in areas. Especially my brain. Since, vitals can be normal and hr and I'm lightheaded and have a tight head feeling when I lay down! I find things that vasodilate me make me feel better, such as eating a big meal really makes me better, its weird lol Oh and Midodrine made the symptoms worse, so it was like a clue to me. and the fact I can stand sometimes with a HR of 60, normal BP but be light headed? Cerebral vasoconstriction! But it changes so much, so if there was med, there would be a point in the day where it could potentially make you worse! Do you drink alcohol? it's a vasodilator and when I drink I feel HERE like not light headed its great if you drink the right amount I feel better the next day too and then it slowly comes back to feeling bad

Hey, I've done a few posts where I say I feel light headed all time laid down or whatever position I am in and a slow heart rate. Well, I reduced my Florinef, I was on 3/4 of a pill maybe a bit more and my potassium was low so was on high supplements, and it shouldnt of been that low on that dosage but of course it was probably a sign my body doesn't work good with that dose! So I reduced my dose to half a pill a week ago, roughly and now my heart rate is actually always above 52, usually in the 60's at rest now, and rises more potsy with standing, food, heat etc!! I'm not light headed like I was and i'm more clear, can think better, see better its beautiful!! So yeah I guess the florinef was making me worse on too much of a high dose! Only downside is, I feel more like anxious and scared a lot of the time and more PVC's probably because more adrenalin is about now there is less blood volume and more potsy lol. Sounds silly but i'm glad to be more potsy again and feel my heart beating more! Now....time to exercise and hopefully feel even more better! After this horrible cold I have lol :( ! Maybe this also explains why alcohol made me feel better, being a diuretic and working against florinef and also it speeds up heart rate. Until tomorrow or next week and im back to how I was haha, fingers crossed this was the cause of my bad symptoms!

Professor Mathias is the best in the UK and travels to the US conferences and works with Vanderbilt etc. He's private but worth it, there is a NHS team under him too Dr Ingles, but they are long waiting times. Up to you I am gonna book an appt with him again soon, after the main appts you can do telephone appts its cool

I might just do a weeks HR and BP diary, and call my autonomic neuro and say these are my readings and my symptoms are always light headed and slow heart rate a lot. Alcohol makes me feel SO SO much better, I think it vasodilates the right areas and increases my heart rate so the right areas get the blood it needs so I feel normal, the only bad bit is it got a bit regular and ended up enjoying getting drunk so I have stopped completely, I dont want to ruin my liver for the sake of feeling normal a few hours, ill limit it to once every 2 weeks or somthing, just that nice release.

Hey all, I'm pretty confused with what I actually have, I know its EDS and a type of dysautonomia and do get pots. But really, on Florinef, my heart rate is pretty good. standing is like 70-80 but I am more light headed, even laid down in a different type of way and feel slow? I dont really get the typical pots rise in heart rate when I stand now. My supine heart rate goes down to like 43 and I feel so weird and slow I hate it! Im trying to figure out, have my symptoms changed a lot or is it the florinef. Im thinking, go down slowly on the florinef and see what happens, I mean if I can get my resting hr faster, Ill feel a lot better. Just not sure how to explain my symptoms anymore apart from slow heart rate and light headed now and again with normal heart rates and blood pressures are always normal lol. Just scared to go to sleep sometimes as I can feel it beating hard and slow, im like ut oh what if it stops! lol I just wish I could see invite my body and see exactly what was going on, the treatment would be much easier then, Midodrine makes me worse too.....

Hey guys, How is everyone? Not posted in a while ! So, today I had to go have a tooth out, which I was very much looking forward to getting out, it has decay and has an impacted tooth coming out inbetween 2 teeth so once its out, the other should come through properly, plus the decay gives you bad breath ! Injected me with Mepivacaine plain 3%, no adrenalin, side of cheeks went numb etc as usual, thought it was all good! Starts pulling and couldn't even get the tooth to budge....hmmm! So then he wanted to drill it down to make it easier or something, begins drilling, OUCH lol, sensetive and hurt, kept injecting me but no help! I've had fillings fine before so what the....at my normal dentist I have Lidocaine, without adrenalin and works ok I guess. Maybe its because of the adrenalin missing? I can tell a difference from when I had it before, maybe I'd be ok having adrenalin in it, but since getting worse with my Dysautonomia I opt against it, just to be sure. So now, I am been reffered to a hospital to see what the next step is, he mentioned a General Anastetic. No thank you lol, I am too let's say afraid to have a general, always been a huge fear of mine, I had it twice in my life, possibly 3, 1 for a hernia at age of 4, 1 for a broke collarbone at 16 and the other as a child for a tooth out I THINK, lol maybe it was a dream. Anyways, bad day, bad mood and no idea how to go forward, I mean the tooth isn't causing me any distress so I can keep it a little longer hehe! My gums are killing from all the slices and injections ouch ouch ouch, bled a little for hours too!!! After the ordeal, the rest of the day I felt really weak and light headed than usual, not felt that bad for a long time....maybe the local? Stress? - Good points; Me and my partner have had our baby! He's 6 weeks and hes cute! The nights take a toll but certainly worth it! POTS - My heart rate never goes up high and I can stay upright all day, probably due to the low dose of florinef as when I try to wean off it, I get worse and get skipped beats etc etc. *Only thing is, I'm light headed A LOT, its awful. I can press my stomach in really right and i'll feel a lot better until I let go, I am guessing it's pushing blood back up and increasing central pressures? But even though I feel bad, my HR is normal and blood pressure normal. I don't get it and now sure how to proceed, maybe contact my doctor and let him know other symptoms are fine it's just that one? - Andy

I came down to half a tablet on my florinef from a whole, and now 2 weeks later my tachycardia is back(I actually like it compared to the slower heart rates I was getting lol!), I feel more light headed, but a better light headed than the one where my head felt constricted and really tight. ****, trading symptoms for symptoms!!!

Hey all, I am lately light headed most of the time, it *****. No matter what position laid down, upside down(lol), standing, I get a head pressure and go light headed, its horrible. My BP is perfect, HR can be like 65 or sometimes slower 55. Brain MRI Normal Echocardiogram Normal 24 hour Holter ECG Normal Blood Counts and Iron Normal Electrolytes Normal Blood Sugars Normal I just cant quite work out why I would be light headed laid down, with normal vitals, it doesn't make sense, then if i stand up it stays the same or gets worse but the HR increase like 10 points not even pots, its like my POTS doesnt happen much any more, just these other symptoms! I do believe I felt better on a higher dose of florinef, which is why these are probably worse now, I came down to see if it helped and was causing the symptoms, but maybe it was helping them, I just couldnt up the dose due to lowered potassium!! GRRR! Not sure what other tests to push for and other doctors are baffled! I was thinking maybe some sort of cerebral blood flow test, I feel like my cerebral vessels are constricted or something! I have a son on the way and moving in the next 6 weeks, so as you can imagine its getting me down! Thanks Guys

I have thought maybe its the blood volume, I will test drinking like 2 pints of water lol...I do pee a lot and I have always had bad hangovers! But I dont mixmy drinks stick to a certain limit and im good lol.

The thing is, the day after I felt so much better in my head too, so its wasn't the buzz or anything, No hyper pots either its some sort of effect lol :/

Hey all, I have tried Midodrine, florinef etc etc Florinef helps a bit, but then daily im really light headed just sitting, even laying, I can get up go out normal heart rate and blood pressure only symptom the bad lightheadedness! The florinef helps the HR. But when I have 2 cans of budweiser 5%, I dont get drunk or imagine it...the lightheadedness GOES COMPLETELY? I dont feel tired anymore, I dont feel weak? I really dont get it, I dont want to have to drink everyday, but it really takes makes me normal?!?!?!?! IF I continue to drink and get tipsy, more drunk, my hr does goes fast, but I feel no symptoms? It really baffles me...lol.....