lattegirl

Hi,

First and second covid shots gave me symptoms worsening each time 

Hi all,

Desparately looking for information of how to handle chronic fatigue caused by booster, now in my 5th week since booster . I have vvs OH. Muscles in legs will suddenly fatigue and I can’t stand up or get off the floor. Start feeling too exhausted by 4pm still have dizziness, nausea severe light headed back aches.Worst is the loss of leg strength then half an hour later it’s ok repeat repeat. Has anyone experienced this and what should I do?

many thanks

2 hours ago, Pistol said:

Yes @lattegirl - this used to happen to me frequently, usually followed by syncope. When I was still working I had no choice to keep going when I hit my limit and often became presyncopal or fainted, this was often described by bystanders that I stopped doing whatever I was doing, had a blank stare and blue lips as well as a white triangle around my mouth - in 90% of the cases I would either pass out or have an autonomic seizure. This happened tons of time at work, so there were always witnesses. After and during an episode I always have slurred speech and talk jibberish - this is due to no circulation to the brain. Since this happened during a workout I would say you probably are doing more than you should - I would hold off on the gym and stick to light exercises!!!!

 

Hey Pistol, thanks for this ,really appreciated I don’t feel so anxious about it I will defo ease up! ! 

I am 2 weeks on from 2nd covid jab and suffering weakness and fatigue. Today went to gym for a light workout so I don’t decondition , had a vv pre syncope episode lost my speech which came back talking gibberish then fluent foreign language! I got very agitated as what I was thinking was not what I was saying.Instructor said my lips went a bit blue.Hands were also bit blue.  Never happened before! Can anyone shed any light on this please? 
Thank you

1 hour ago, Lynnemily said:

I have this same symptom. It can come up from a non- pre-syncopal episode, too. Like if I was recently stressed or had a busy week. I sound like I have had a seizure. With can’t speak at all, or it’s slow and slurred or it’s gibberish. I have had these episodes checked out by a neurologist and cardiologist to see if if it’s the heart not pumping blood up to my brain or if it’s my brain having seizures and short circuiting. Nothing came of the results from MRI’s, CT scans, tilt table, and seizure brain wave tests. I just chalk it up to one of my funky quirks I have now and am glad it’s not something dangerously wrong.

Hi,

That must be very frustrating for you, I suppose it is not related to changes in your sugar level? I know I  get hypoglycemic and then the symptoms start for that too.

Thanks!

Wow not being dizzy sounds amazing so pleased for you ! Some people without these conditions have no idea what a big deal a break thru is!! My gym instructor's are the exception they are working over and above to help me have less symptoms they are amazing people!!

You are right we are a determined bunch,  my instructors have already said that of me and that I laugh alot once I am over another bad episode! 🤣 

Takecare x

You are making perfect sense! 

I'm inspired and hope one day to be where you are, you have come along way ,amazing and well done!

I can only work part time and do try and push thru the warnings! I must learn to heed them!

I Resisted medication for years,  tried fludrocortisone ? Im sure I have written that wrong, which reacted badly so didn't want to try midodrine  until now as episodes were getting frequent.

I am slowly realising it is a combination of electrolytes,  drugs, compression socks , diet etc and it's good to know I'm heading the right way! Thanks so much! 

Happy Christmas!

5 hours ago, dancer65 said:

Hi

i teach dancing to adults and kids I take 7.5 mg x3 times a day so I time it that I take a dose 1 hour before I start my classes I also load up with electrolytes . This keeps me going for about 2 hours. I have VVS and POTS .

 

Hi dancer 65,

Wow that's great,  so does it always stop the vvs from happening when you are teaching or can it occur later in the day or next day?

Sorry , I am new to taking medication.

Hi,

Just wondering if anyone takes midodrine before working out at the gym?

I have vasovagal presyncope and am having episodes each time I go to the gym.I take midrodine 1.25mg  after the event when I am able to sit up but am wondering whether taking it before gym would stop the episode?

Anyone have any info on this.

Many thanks

Hi Pistol,

I recognise alot of the same symptoms thanks for helping clarify which is which !

On 12/11/2019 at 1:52 AM, Pistol said:

@lattegirl - I have VVS and hyperadrenergic POTS. When my BP drops I pass out and when it goes too high I take seizures ( all caused by inadequate circulation to the brain ). In either scenario I can experience periods of confusion, loss of speech or very fast speech after becoming conscious again. Sometimes this lasts a few minutes and sometimes as long as a few hours, in my case it depends on how severe  and how long the loss of cerebral circulation was. I also have reactive hypoglycemia (also caused by dysautonomia) and when that happens ( I can absolutely tell the difference between being presyncope from POTS or from hypoglycemia) I normally return to normal as soon as my blood sugar goes back up. I agree that coke is not the best option for low sugar - I usually have to take a fast-acting sugar (such as grapes or orange juice) and a carb or protein to keep the sugar up once it is normal again. 

IMO it appears that you may have been pre-syncopal and your body was not able to adjust as fast as you wanted it to. Normally - in my case - I have to lie down and recouperate for a while after an episode. 

Hi Pistol

Thanks for all the info , now I know loss of speech  can last alot longer.

I'm very interested in how you know  the differences between hypoglycemia and presyncope as I struggle to know which is which.

I will add protein - had not thought of that.

Thank you !

21 hours ago, MTRJ75 said:

I haven't been diagnosed with VVS, but have had the lack of speech thing a few times. For me, it's like my mind wants to say words and sounds come out of my mouth, just not in the form of words or at least not the words in my brain. Unfortunately, this was one of the symptoms that my family believed I may have been "selectively enhancing" and it felt so surreal that afterward I even questioned myself if it was real. 

I get the shakiness too. Internal tremors are one of my worst symptoms as a matter of fact and caused me to have to give up working out around a year and a half ago because the post-workout shakes got so bad. Now I can sometimes get the full effects of a workout (sweating, shaking) from a frustrating phone call. 

I'm wondering if you might want to experiment with some more friendly sugars (fruit?). The Coke especially probably isn't doing good things to your body. 

Hi,

Thanks for your reply, 

Sorry to hear you had to give up work outs.

Vagus triggers do include emmotional situations and I wonder if you are experiencing this with the phone call?

I will give fruit juice a go although my 150ml coke had worked for the last 4 years. 

All the best

Hi all,

I have Vasovagal presyncope, 

Went to gym today,  had tremors working out which were controlled with jelly shots.As I was leaving the gym became confused and had an episode - shaking, cold, dizzy light headed, unable to speak or lie down etc.Gym instructor took over,

Usually a small coke brings me out of it but it didn't and had to have another jelly shot , possibly meaning the trigger was more low blood sugar than exercise fatigue.

I was not able to speak for 30 mins and wondered is this normal as usually  I  can speak in about 10 minutes.It felt a bit scary as I didn't have a clue how to speak  I knew what I wanted to say. 

Any thoughts would be great, also any ideas on how you cope with the exercise without triggering vvs.

Many thanks 😊

1 hour ago, Lily said:

I am a sedimentologist and college professor, so I do research outside.  Many times I have to go even though it is hot and humid.  I always wear an ultraviotet-protective shirt due to my coloring, and I have found that soaking this in ice water provides relief (until it dries out).  Also, roll some ice cubes into a bandana or cotton scarf and tie it around your neck.  You can also buy shirts and scarves that keep you cooler once you start to sweat.  I tried one once, and while it did not keep me cool it did make the heat and humidity bearable.

Some good ideas thanks I will try them out!

23 hours ago, edriscoll said:

Another alternative to the cooling vest are the cooling towels.  You wet them with cool water and use them around your neck.  You can stretch them out when they start to get warm and they cool down again.  They aren't great if you are out in public because they do leave the front of your clothes damp, but if you are at home, then it is is a good way to stay cool.  

They sound great I will have a go thanks !

24 minutes ago, bombsh3ll said:

I'm also in the UK hating the heatwave just now too! I'd have loved a summer like this before POTS  I'm in Edinburgh so it's not quite as bad here, I really feel for those of you in the south of England.  I just bought a water spray bottle which is good for cooling down, and have ordered some mint essential oil to add to it too. I frequently sit with a pack of frozen peas to my head/neck for the headaches too so more of that, and eating ice lollies.

I am also going to look into cooling vests and towels too.

B x 

Thanks for ideas I will try the spray ! x

16 hours ago, StayAtHomeMom said:

Keeping your body cool can help. Cooling vests I heard are great. I use water drip it on my skin with some sort of fan to keep me cool. Any word on how long your heatwave will last? I live in the US and ours finally eased a bit. It is finally getting cool at night. 

Hi thanks will look into cooling vests. 

So far heatwave has no end in sight but temperatures are dipping with cloud cover which helps.

Hi clicky 77,

Poor you , 

Let's hope the neurologist has some ideas.

It is very tough in this heat, I have found some help sipping Skratch hydration mix thru the day. I also keep a cushion at the foot of the bed so when I am symptomatic at night I can raise my legs and drink water too. I'm glad I'm not on my own with this.

Hang in there.

Hi,

I'm usually a reasonably managed presyncope person.Since the UK heatwave started it's like I've become hyper sensitive and the usual build up of light headedness to can't think straight to nausea, tremors to slurred speech then shaking and loss of speech must get to the floor has gone.

Now it's sudden light headed and bang straight into slurred stuttering tremors shaking .

This is a bit shocking to me despite increasing salt fluids etc.Anyone else had this ? Is this normal .I now have a large gallstone and consultant says this has an impact on it all.

Help ! Anyone going thru this...

I have vasovagal syncope reasonably managed....

Recently diagnosed with pebble size gallstone, causing nausea , pains aching under ribs and intermittent reflux, ibs.

Now finding it is triggering pre syncope attacks and at night.

Does anyone know if this is all related as I know vagus nerve function does affect bile production and digestion ??

Also ideas in dealing with it ??

Thanks 

Anyone out there manage day to day  vasovagal episodes without the use of medications?

I am curious to know if it is possible and How?

On 19/02/2018 at 3:18 PM, ANCY said:

My BP is all over the map right now, we've dealt with it by using midodrine (10-20 mg 5 x a day) florinef (0.1 mg 2 x a day) and clonidine as needed for dangerously high spikes. The midodrine has served me well as its short acting and if I end up higher than I should be it's only for a couple hours. Florinef is more long acting so we don't mess with the dosing, it does help (most of the time) maintain a higher baseline bp. 

That's been my experience, I do get headaches from the midodrine and some other side effects but for me the benefits outweigh them. It really boils down to wether your body can tolerate the meds and how useful they are for you as a part of your treatment plan. 

I have a feeding tube so had roughly the same intake day to day for a while. Despite this, I still had a wide range in BP. Right now I'm struggling to get adequate hydration and nutrition which is of course lowering my baseline BP.

Really helpful thanks and sorry you are having such a rough time hope things improve for you

Thanks Ramatentesh,

I have not noticed myself a difference in using butcher's broom but maybe you need to use it beyond 1 month to receive benefits or side effects. 

Interesting, I wonder how much is affected by our diet when not on meds as related to taking meds. Have you any experience on that too ?

Pistol ,

Thanks for the input you are right but when I have good spells I tend to think it's not necessary .