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Hi, 

As the title suggests, I'm in need of urgent help. For over a year now my life has been turned upside down and no one has any answers for me. in Aug last year I came back from  holiday from Fiji with the family. Whilst the holiday was great and I felt great, within 3 days of returning my life turned to crap ! I start feeling very fatigued and tired initially. I could barely stay awake. I've had weird bowel habits also... whilst I'm normally constipated, I came back to going to the bathroom once or twice a day for over a few month non stop which is unusual for me. I had all the blood work done, a chest CT, abdominal CT, stool tests and many GP vists. No infection was found however my CRP was slightly elevated. It eventually returned to normal. Since then things progressively got worse. I was in line a few time whilst shopping and my heart rate raced to the point where I have felt like I would pass out. As soon as I started walking again it would gradually reduce. I started to get palpitation and a 24 hour monitor showed over 1500 ectopic beats ! further heart testing showed a structurally normal heart, the doctors sent me on my way ! I've now lived with these palpitations, fatigue, very funny high and slow heart rates for month's now and no on has an answer me ! all the test reports show nothing is physically wrong. My legs at night burn to he point I have had to put an ice pack on them to sleep and my sleep patterns haven't been great either.  I'm still working and have good days and bad days. I'm still able to excercise if If I really push myself but there is nothing enjoyable about this existence ! the fatigue and palpitations are horrible !  My research has led me to believe this could be some kind of autonomic disorder, maybe not POTS, but something weird is going on ! I feel like I'm just out of balance. Does anyone have any advice on how to proceed from here ? The doctors have tried to throw beta blockers at me and whilst they do help the palpitations they make the fatigue worse. Does anyone have any advice on what I can do from here ! I feel like I'm doomed to live like this forever and its really sending me into depression.

Thank you

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Hello @Sam10 - I am so sorry that you are dealing with all of this, and seemingly are on your own!!! Some of your symptoms sound as if they could be dysautonomia related, but they could also be caused by something else. It's possible that you picked up something uncommon in Fiji and this caused these symptoms. Dysautonomia commonly is triggered by an infection - so it could be that potentially. 

Personally - if you have not been able to be evaluated for dysautonomia it may be a good idea to seek advice from an autonomic specialist ( see our physician list under the physician tab on this web site ). Fatigue, palpitations and GI issues can definitely be dysautonomic - the burning legs could be a neurological symptom: have you seen a neurologist? ------ In general increasing water and salt intake can help immensely for your symptoms. Compression hose as well - but I am not sure if you could tolerate it with the burning of your legs. 

Unfortunately I don't have any words of comfort to give you other than to seek a knowledgeable specialist. It is quite common to not find answers from the general medical community since they rarely are able to treat dysautonomia. Regarding the fatigue: I have found that pushing yourself can make this worse, many of us have to limit our activities and adjust to the demands of our bodies. A schedule allowing for ample periods of rest with mild exercise ( to your tolerance ) can aide in improving some of your symptoms - but be careful to not push yourself. 

For further info on diagnosing Dysautonomia you might find this helpful: 

 

 

 

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Hi Sam10, 

My initial thoughts when reading this were like what Pistol said - perhaps you picked up a parasite or something unusual in Fiji. If you have access to an integrative medicine or functional medicine doctor, they should able to look at the whole picture and all of your symptoms together. If not, perhaps your doctor could order a stool culture to check for anything you might have picked up while traveling. 

This sounds awful, and I hope you find some answers!!

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thanks for the feedback. I've had 4 stool samples done over the past few month plus multiple blood tests to look virusus etc... nothing ever showed up except a high inflammation CRP and slightly low iron which all normalized. it's very possible I had something that just hasn't been detected and has somehow resulted in these permanent issues I'm now dealing with. I don't know. I've seen 4 general practitioners , 1 gastroenterologist and 3 cardiologists including 1 Ep doc who specialises in arythimias.The last cardiologist I went to was the most proactive and said well maybe I had a virus that has caused mycardial inflammation so sent me off to do a cardiac  MRI. This all came back normal ! it's so bad I was actually annoyed the results came back normal cause now I'm back to them telling me I'm nuts and anxious which is causing all my symptoms. I just cannot get over the fact that I can almost pin point the day everything started to go down hill. I've never has a single ectopic beat before now I get over 1500 all day every day ! my next step one of the cardiologists suggested is ablation to try and reduce the PAC symptoms at least. I'm not sure how to proceed with that... bite the bullet and at least try and get rid of the ectopics with surgery or wait and try and fix the root cause of whatever is causing this .

 

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@Sam10 - I would like to warn you that ablations are not recommended for dysautonomia because the cause of both tachycardia and palpitations are not within the heart itself ( therefore there is nothing to be ablated ), but rather stemming from abnormal nerve communication. I have heard from several patients that had an ablation for their tachycardia that it was not at all helpful and from doctors that ablation would not help unless it is an arrhythmia such as inappropriate sinus tachycardia, ( which can cause similar symptoms as POTS tachycardia ). Here is an exerpt from an article on Dysautonomia International: 

* Sinus node ablation/modification. The role of sinus node ablation and modification in patients with IST has not been well defined and it should only be seen as a last resort treatment. Although short-term success rates were favorable (76%-100%), long-term outcomes were disappointing, and the need for permanent pacing and other procedural-related complications has been reported.(1,2,3,9,10,14) Sinus node ablations are not recommended in patients with POTS, as this often worsens the condition.(1,15)

You can find more info from this link: https://www.dysautonomiainternational.org/page.php?ID=228

 

12 hours ago, Sam10 said:

I've never has a single ectopic beat before now I get over 1500 all day every day ! my next step one of the cardiologists suggested is ablation to try and reduce the PAC symptoms at least. I'm not sure how to proceed with that... bite the bullet and at least try and get rid of the ectopics with surgery or wait and try and fix the root cause of whatever is causing this .

Honestly - it sounds to me that none of your cardiologists or GP's are considering dysautonomia,  which would alarm me personally and would keep me from having an ablation unless they have found the cause of your tachycardia. Extra beats such as PAC's and PVC's often are treated with medications and are considered harmless ( albeit scary and annoying ). I also know the exact day of onset of my dysautonomia symptoms and developed non-stop palpitations, just like you. In my case proper medication have helped for this. I saw 5 cardiologists that only looked at the heart itself and therefore missed ( and even Dismissed!!!! ) dysautonomia. I was not diagnosed until I saw an autonomic specialist, so I would consult with one before having any invasive procedure done. Although trying several medications before finding the right combo ( including several beta blockers ) my PVC's and PAC's are mostly gone with medications ( in my case the beta blocker Carvelidol stopped them ). 

If your symptoms are caused by dysautonomia ( and it sounds possible ) I personally - as I mentioned before - would see a specialist in autonomic disorders first, to confirm or rule out dysautonomia. Best wishes!!!!!!!!!!!!!

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On 5/8/2020 at 4:50 AM, Sam10 said:

Hi, 

As the title suggests, I'm in need of urgent help. For over a year now my life has been turned upside down and no one has any answers for me. in Aug last year I came back from  holiday from Fiji with the family. Whilst the holiday was great and I felt great, within 3 days of returning my life turned to crap ! I start feeling very fatigued and tired initially. I could barely stay awake. I've had weird bowel habits also... whilst I'm normally constipated, I came back to going to the bathroom once or twice a day for over a few month non stop which is unusual for me. I had all the blood work done, a chest CT, abdominal CT, stool tests and many GP vists. No infection was found however my CRP was slightly elevated. It eventually returned to normal. Since then things progressively got worse. I was in line a few time whilst shopping and my heart rate raced to the point where I have felt like I would pass out. As soon as I started walking again it would gradually reduce. I started to get palpitation and a 24 hour monitor showed over 1500 ectopic beats ! further heart testing showed a structurally normal heart, the doctors sent me on my way ! I've now lived with these palpitations, fatigue, very funny high and slow heart rates for month's now and no on has an answer me ! all the test reports show nothing is physically wrong. My legs at night burn to he point I have had to put an ice pack on them to sleep and my sleep patterns haven't been great either.  I'm still working and have good days and bad days. I'm still able to excercise if If I really push myself but there is nothing enjoyable about this existence ! the fatigue and palpitations are horrible !  My research has led me to believe this could be some kind of autonomic disorder, maybe not POTS, but something weird is going on ! I feel like I'm just out of balance. Does anyone have any advice on how to proceed from here ? The doctors have tried to throw beta blockers at me and whilst they do help the palpitations they make the fatigue worse. Does anyone have any advice on what I can do from here ! I feel like I'm doomed to live like this forever and its really sending me into depression.

Thank you

Hi are you able to connect with a dysautonomia specialist on the Dinet list of doctors?  Did you get a tilt table test?  To be honest your story didn’t sound like dysautonomia to me til I got to the end. The off balance and heart racing when waiting in line at grocery store sounds just like dysautonomia.  Do you have a heart rate watch and blood pressure monitor so that you can take measurements at home, sitting and standing? 

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9 hours ago, Pistol said:

@Sam10 - I would like to warn you that ablations are not recommended for dysautonomia because the cause of both tachycardia and palpitations are not within the heart itself ( therefore there is nothing to be ablated ), but rather stemming from abnormal nerve communication. I have heard from several patients that had an ablation for their tachycardia that it was not at all helpful and from doctors that ablation would not help unless it is an arrhythmia such as inappropriate sinus tachycardia, ( which can cause similar symptoms as POTS tachycardia ). Here is an exerpt from an article on Dysautonomia International: 

* Sinus node ablation/modification. The role of sinus node ablation and modification in patients with IST has not been well defined and it should only be seen as a last resort treatment. Although short-term success rates were favorable (76%-100%), long-term outcomes were disappointing, and the need for permanent pacing and other procedural-related complications has been reported.(1,2,3,9,10,14) Sinus node ablations are not recommended in patients with POTS, as this often worsens the condition.(1,15)

You can find more info from this link: https://www.dysautonomiainternational.org/page.php?ID=228

 

Honestly - it sounds to me that none of your cardiologists or GP's are considering dysautonomia,  which would alarm me personally and would keep me from having an ablation unless they have found the cause of your tachycardia. Extra beats such as PAC's and PVC's often are treated with medications and are considered harmless ( albeit scary and annoying ). I also know the exact day of onset of my dysautonomia symptoms and developed non-stop palpitations, just like you. In my case proper medication have helped for this. I saw 5 cardiologists that only looked at the heart itself and therefore missed ( and even Dismissed!!!! ) dysautonomia. I was not diagnosed until I saw an autonomic specialist, so I would consult with one before having any invasive procedure done. Although trying several medications before finding the right combo ( including several beta blockers ) my PVC's and PAC's are mostly gone with medications ( in my case the beta blocker Carvelidol stopped them ). 

If your symptoms are caused by dysautonomia ( and it sounds possible ) I personally - as I mentioned before - would see a specialist in autonomic disorders first, to confirm or rule out dysautonomia. Best wishes!!!!!!!!!!!!!

pistol thanks the for reply ! the ectopic beats are very odd ! if I'm sitting still they are not too bad. as soon as I stand or go for a walk they start again ! also they go away of I'm running and take my heart rate right up but come back with avengence when I stop in a standing position. I almost have to cool down slowly to stop a storm of then coming in at once. it's very annoying ! they also cause me insomnia at night which is also very annoying and probably contributing to fatigue. In terms of medication I have tried antenolol beta blocker which worked for a couple of month at a low dose of about 12.5 mg but I feel like they aren't helping much anymore or as much as they used to. they used to limit how high my heart rate goes during exercise now it's almost like my body has got used to it and my heart still shoots up even with the beta blocker. the doctor said I can go up in dosage but I'm putting on weight even though I'm eating less ! so I'm not too keep to keep putting up the dosage. another cardiologist gave me flecanide but I'm too scared to take it ! I'm putting that off unless my systems are really unbearable (which I'm not far from) . I saw one of the best ep doctors around here in Oz and like most other cardiologists has dismissed pots . he said what the results shows are PACs and I have 3 options. drugs , ablation or just live with it !in his words they are of no clinical significance. easy for him to say he is not living with them !

do you have any other recommendations for different drugsto try ? is there any hope of this getting better or going away over time. it all started last August so I guess coming up on 9 or 10 month of this h*** !

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here is an extract from my stress echo. I went from sitting to standing where my heart shot up to 130. no one picked up on it ! it also mentions the frequent ectopics at rest. all the cardio doc saw was the conclusion of normal stress echo and attributes everything else to being anxious for the test ! when I pointed out the other numbers I got told I shouldn't read too much into the numbers

SmartSelect_20200510-085011_Drive.jpg

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6 hours ago, yogini said:

Hi are you able to connect with a dysautonomia specialist on the Dinet list of doctors?  Did you get a tilt table test?  To be honest your story didn’t sound like dysautonomia to me til I got to the end. The off balance and heart racing when waiting in line at grocery store sounds just like dysautonomia.  Do you have a heart rate watch and blood pressure monitor so that you can take measurements at home, sitting and standing? 

yeah I have tried a couple locally but their wait time is rediculous ! the earliest at the moment I can get is August of this year. to summarise symptoms

-constant fatigue

-insomnia

-ectopic beats daily

-racing heart sporadically when standing (not all the time but definitely random)

-I have had 3 incidents kown at work when in a long conversation with someone I get very dizzy and have to stop talking to a minute or 2 before things get back to normal

-things are always worse after eating. ectopic beats and fatigue specially.

all my tests keep showing normal ! including

head MRI

chest ct

abdominal CT

heart echo

heart stress echo

24 hour Holter

cardiac MRI

either I believe the doctors that I'm going nuts or this has to be some sort of autonomina imbalance of some sort

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Honestly, I just put up with the weight gain. I had to choose between some functionality or looking good but not being able to take care of myself. 

I have also been told ablation is not a solution. 

I agree about finding a dysautonomia specialist. I went years before getting proper treatment. 

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53 minutes ago, Sam10 said:

yeah I have tried a couple locally but their wait time is rediculous ! the earliest at the moment I can get is August of this year. to summarise symptoms

-constant fatigue

-insomnia

-ectopic beats daily

-racing heart sporadically when standing (not all the time but definitely random)

-I have had 3 incidents kown at work when in a long conversation with someone I get very dizzy and have to stop talking to a minute or 2 before things get back to normal

-things are always worse after eating. ectopic beats and fatigue specially.

all my tests keep showing normal ! including

head MRI

chest ct

abdominal CT

heart echo

heart stress echo

24 hour Holter

cardiac MRI

either I believe the doctors that I'm going nuts or this has to be some sort of autonomina imbalance of some sort

Even if the wait is long, a dysautonomia specialist is the best person to diagnose you through a tilt table test.  Most  doctors have a waiting list and you can get in if they have a cancellation.    In the meanwhile, checking your HR and BP at home can give you a sense of whether you have dysautonomia.

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so I did some testing at home with measuring my pulse and bp. my blood pressure doesn't seem to drop acrually. infact it goes up just a tad when standing specially the diastolic. I went on average from 105/70 to 120/80 standing. the problem though is my resting heart rate went from 65 to about 90 instantly on standing and was about 100 after a few mins of standing . it drops right back to the 60s when I sit back down. it seems my heart rate def goes up but my blood pressure doesn't really come down . also I start to feel very bearthless standing still. it's weird I almost feel more breathless standing than I am walking ! does dysautonomia have to include a blood pressure drop ?

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9 hours ago, Sam10 said:

so I did some testing at home with measuring my pulse and bp. my blood pressure doesn't seem to drop acrually. infact it goes up just a tad when standing specially the diastolic. I went on average from 105/70 to 120/80 standing. the problem though is my resting heart rate went from 65 to about 90 instantly on standing and was about 100 after a few mins of standing . it drops right back to the 60s when I sit back down. it seems my heart rate def goes up but my blood pressure doesn't really come down . also I start to feel very bearthless standing still. it's weird I almost feel more breathless standing than I am walking ! does dysautonomia have to include a blood pressure drop ?

O @Sam10, it does not. Criteria for the diagnosis of POTS is a HR increase of at least 30 BPM within 10 minutes of standing WITHOUT a significant drop in BP, symptoms for at least 6 months, symptoms exacerbated by standing and improving with lying down. It appears you fir at least 2 of these criteria, so I would approach this by seeing an autonomic specialist. 

 

10 hours ago, Sam10 said:

I have tried a couple locally but their wait time is rediculous ! the earliest at the moment I can get is August of this year.

That is GREAT!!!! Many autonomic specialists have a waiting list of up to 1 year ( my specialist has 18 months for new patients ). ---- Your stress echo shows PAC's, which are not considered a serious arrhythmia ( but I have them and PVC's and therefore know how hard it is to live with them 😒 ). Here is an explanation 

Premature Atrial Contractions

Premature atrial contractions are the most common atrial arrhythmias, occurring in 54% of patients with acute MI (see Table 20-1).8,11 These beats may result from heightened sympathetic activity owing to pain or anxiety, or they may result from atrial distention, pericarditis, atrial infarction, or atrial ischemia. Although premature atrial contractions may precipitate other atrial arrhythmias, they are usually asymptomatic and are of no hemodynamic significance. Because premature atrial contractions are not associated with increased mortality, medical therapy to suppress these beats is not indicated.11

 

As you see they often result from heightened sympathetic activity, as is present in dysautonomia. --- You mentioned that the beta blocker you used was only helpful for a few weeks and then the cardiologist recommended to increase the dose - this is also common in dysautonomia. I tried 4 BB's and all of them stopped working after a few weeks, to the degree that I thought I was building up a tolerance to them. My current BB ( Carvelidol ) was started at 3.25 mg and I have been on 25 mg for 5 years!!! So as you see - this is common. 

Since I also had bad experiences with cardiologists ( including an EP who conducted a TTT and completely misdiagnosed my clearly positive results as anxiety ) I can only again stress the importance of seeing an experienced autonomic specialist. I have to travel 8 hours out of state to see mine - and most of us have to travel for our appointments. Many states do not have anyone specializing in this field. "Regular" cardiologists simply do not want to mess with dysautonomia and only will treat your cardiac symptoms ( Tachycardia and ectopic beats ). Unfortunately many will dismiss all of the other symptoms.  What you are going through right now is unfortunately a scenario a majority of POTS patients has to endure since ( still!!! ) the time from onset of symptoms to diagnosis is 6 years in most cases. I was diagnosed within 2 years but that is only because I researched dysautonomia and ended up knowing more than my docs about it - therefore I was able to "fire" all of the bad ones and asked my PCP for a referral to one of the nations greatest dysautonomia specialists and after a 1 year waiting period he diagnosed me in the first visit and has been by my side ever since. 

The people on this forum have all experienced your dilemma and since so many of us suggest a specialist it may be what you want to look into. Good Luck!!!!!!!!11111

 

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5 hours ago, Pistol said:

These beats may result from heightened sympathetic

I believe that they can also result from any imbalance in the ANS as I have heightened parasympathetic activity rather that sympathetic activity, and I also get them. My EP says that, when using med students as controls, even this supposedly normal control group got lots of PACs--but ours seem to be more in the "thumping" category and thus bother us more.

Personally, I now have a pacemaker with an algorithm that over-rides PACs and this does seem to largely work, though obviously it is not a solution for everyone. 

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thank you sounds like I need to get in a wait list of a specialist. in the mean time is there anything I can do about the fatigue. I have noticed the fatigue and ectopics seem to come in waves together. does anyone have any good tips to deal with that in the short term till I can see someone. I have noticed by accident that after I go for a swim in a cold pool the fatigue and palpitations go away for a few hours . I'm not sure how or why it just seems to happen . I'm trying cold showers at the moment and they do help somewhat. is there anything else ?

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Maybe try compression garments and see if that helps. Some people say it helps them. Did your other doctor suggest increasing your salt intake? A lot of people do that, but check with your doctor.

Hang in there. We have all walked this path.

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@Sam10 - I agree with @KiminOrlando. Compression hose can be very effective for fatigue. It sounds to me that it is possibly caused by excessive vasodilation in your case, since it seems to improve after exposure to cold water ( a vasoconstrictor ). The vasodilation can also bring on ectopic beats  - so it may be something to be considered for you. There are medications that can help with this but they of course need to be prescribed by a physician. In the meantime increased salt and water intake as well as compression garments could help. 

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POTS is defined by just an increase in HR of 30 points or more.  There doesn't need to be a change of or decrease in blood pressure.   When I first got sick I found it helpful to keep a journal of my BP and HR at various times in the day.   Also checked my pulse walking around.  Once you connect with a dysautonomia doctor that information will be helpful for them to see.

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thank you guys for the tip I will take it on board . in the mean time has anyone got any info on how this fits in with covid 19. I'm just getting by at the moment with work and family life etc... with restriction now at our end of the world in Oz slowly being loosed and kids going back to school I'm concerned about a covid 19 infection tipping my symptoms over the edge ! I'm only 39 but still it sounds like any kind of virus changes the balance of things within the body. has anyone been given info about the risk to people with autonomic imbalance from corona virus ? should I treat myself as being part of a high risk group ?

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  • 1 month later...

I'm sorry to bring this up again. I feel like I can't keep doing this anymore . I was having a great few weeks and then all of a sudden the last week or 2 have been horrendous ! I can't work anymore ! I'm that tired it's not funny . I sit there and I can't even talk much without getting wiped out . I feel diZzy all of a sudden Monday through a conversation and I have to stop talking . My muscles are twitching, my eye is twitching and the ectopic beats have gone nuts . any sympathetic drive like when getting up or lying back down start the ectopics . I have to hold my breath when I sit down after standing cause I feel like there is some pressure differential adjustment in my chest and holding my breath is the only thing that stops the heart going into multiple ectopics ! I'm lost interest in everything cause all I think about all day is how I'm feeling like crap and it's just not getting better . I saw my go who said I'm just anxious!  still waiting for a neuro specialist till August . in the meantime I'm mucking around with drugs myself and I don't know what's causing what. I'm thinking myabe the atenolol is causing this. the doctor said try flecanide which did nothing and now he is saying try a calcium channel blocker. no one has been able to give me a plan ! I'm just having all these drugs thrown at me and im too scared to take them incase they make things worse . is this normal to be feeling like this ? does it ever get better ! I'm only 39 and the thought of living like this another 2 or 3 decades scares the crap out of me. 

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Dear @Sam10 - this has happened to me more often than I can remember. I would feel better for a little while and out of nowhere I would get hit with the fatigue, ectopy, brain fog etc ... so depressing to keep getting thrown back into the abyss!!!! But in my case I always had to wait it out ( still do ) until the flare was over. For some reason many of us have problems right now, I think it is the change in weather - but it can also be that we tend to get easily dehydrated when it gets warmer.  When I get like that I simply do what my body demands: I rest, I drink, I eat salt ... then I SLOWLY start mild exercises once I start to feel a bit more energetic. That can be one week or it can be one month .... just hang in there. And if your doc prescribes meds they are usually worth a try. How else will you get better if you don't try? I always tried, even if they ended up not working or gave me side effects. Without trying i would not have found the ones that in the end helped me. 

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thank you . i think the toughest thing is mentally there is so much going around in circles with symptoms and no one really having a clue you start to lose track of why you are actually so miserable ! there is so many little symptoms involves at the same time it hurts my brain to keep track. I think at the moment the ectopics and fatigue combined with the anxiety they are causing is my biggest issue . the other thing is excercise . I can run , walk lift weights etc.. and I feel fine when actually doing it . but if I stop and stand in one spot after everything goes to crap . my legs start to hurt to stand on them, my heart rate goes higher than what it was while I was excercising and the ectopics goes nuts. what I think is happening is whilst I'm exvercising my leg muscles r helping pup blood back up . as soon as I stop everything rushes down and my blood pressure drops . my heart then goes nuts trying to compensate and hence the increased heart rate and ectopics . I almost have to stop running or walking and go straight into bed for a few mins lying flat during recovering . then I feel semi normal again . at this point I'm thinking I either need drugs the construct my blood vessels or I need compression garments . has anyone used the sports style skins pants etc.. that runners use ? I think they are not medical grade but would they be enough to provide support whilst excersing ? 

thanks 

 

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11 hours ago, Sam10 said:

I think they are not medical grade but would they be enough to provide support whilst excersing ? 

They could - best thing is to try them out. 

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