Nin

I'm confused because I forgot to take my beta blockers today but my heart rate is normal (not going up by 30 beats when standing) its not going high as I would have expected it to by not taking the beta blockers. Im confused now thinking I can't have pots and I got control over symptoms. 

I've gone right down the past few weeks. I had the flu jab and then a few days later the contraceptive jab depo. Depo has progesterone in it and it definitely messing with me. Im back to where I was 2 yrs ago when I was in hospital. Having seizures again after not having them for a Yr. 

Has hrt only got estrogen in it? Has it got progesterone in it??

Always looking for answers....so frustrating isn't it! 

15 hours ago, JennKay said:

@NinSorry to hear you are dealing with this after not having issues for a while. I don't have much advice to give, but I usually tend to have more "episodes" (adrenaline surges) while seated or laying down as opposed to standing. I have been diagnosed with pelvic congestion syndrome (by ultrasound and subsequent MRI), which causes pooling of blood in my abdomen. This is likely from having multiple kids. Maybe sitting for a few hours caused blood to pool in your abdomen and this caused things to flare suddenly? 

Yes I agree sitting can sometimes be just as bad as the blood can start pooling. I think sometimes you need to keep getting up to circulate the blood.

I haven't had a seizure in over a year but unfortunately had one yesterday. What I'm so confused about is that I was sat down not up and about. Does anyone know what might have gone wrong. I hadn't done much that day as it was Sunday, just watching netflix for a couple of hrs. I didn't feel 100% but nothing out of the ordinary for me. I checked my BP and it was high for me as I'm generally on the low side everyday, so I knew a storm was coming. For some reason I start having these tics before hand (almost like tourettes) and them boom head lunges forward and it all starts. Im so disappointed I went so long and I'm back to square one again.

I haven't felt great say the last 10 days with bad dizziness, so don't know if I'm going though a flare or something. 

I remember having this awful shooting pain going up my foot beforehand as well

Hi Mike0

I haven't had a seizure in over a year but out of the blue yesterday had one. I don't know prior to a seizure what goes on but generally my BP is low, then when a seizure is coming it goes up and I know a storm is coming. Usually before a seizure I just feel weird, my breathing starts going fast and I start with these tics (almost like tourettes) then I always seems to lunge forward. Yesterday I had them for about 30 seconds but had 3 one after another. When first started they wasn't like that. I would be standing talking to my mum and then just start staring (i could hear her but couldn't respond) this was always when standing and would last no more than 10 seconds. Didn't realise at the time what is was. The thing I'm confused about yesterday is why after a year did I get one out of the blue and it was when I was sitting not standing! 

Been taking fludrocortisone for 8 weeks and suddenly feeling really dizzy after 8 weeks. Has this happened to anyone else? Dont feel like its helping anyway. Im always off balance and problems with my eyes but its gotten worse  the past 5 days. I had the flu jab the day before it got this bad...could it be the flu jab?

I notice the twitching more when I'm about to sleep. This rocking feeling is making me feel so off balance.

My head been feeling like its rocking, bobbing all day. Cooked today maybe all the standing triggered it. Baffling me

On 11/5/2021 at 5:47 PM, CallieAndToby22 said:

Thank you for your response. I'm supposed to get testing soon with ENT. One thing I've noticed is that vasoconstriction of the brain lessens the tinnitus where-as Vasodilation makes it much worse. Have they discussed treatment options with you? And yes the movements and neurological problems are beyond frustrating and to not get any answers.

The only treatment would fix any missing bone. But he did say going into the head comes with risks and I will need to discuss the risks. Problem is I might cause more harm having more surgery. Then if I don't I will have to live with the buzzing/ringing in ears, my eyes being messed up, can't bend forward, can't look up. Lights are also a nightmare for me. Problem is some of my problems might be pots when I think its my ears causing them. Just so hard to answers!

Hope you recover soon pistol.

You sound a lot like me. I haven't had a seizure in a while, I do get myoclonic movements out blue. I even get these tic like things. The tinnitus is in both ears, I can't tilt my head to the left because of the whooshing. I have got problems with my ears but this has gone to the temporal bone and I may have some bone missing im not sure yet. Had a ct scan a couple of days ago so will discuss the results with ent. I wonder if you need a scan of the ears/head.

I love watching the birds! We had a woodpecker in the garden which is really unusual. We also had a lonely parakeet recently but I think the magpies run it out. I just love being around animals

19 hours ago, Pistol said:

@Nin - yes, you should still wear compression stockings. In some cases of HPOTS the blood vessels first go too limp and that is why the sympathetic NS kicks out so much adrenaline - in an attempt to compensate for the vasodilation. So if you wear compression hose you can prevent this from starting n the first place! The only time you would not wear them is if you have problems with circulation in your feet. i have Raynauds syndrome in my feet, for example, so I cannot wear them. 

Yes makes complete sense what you're saying. Thanks for the reply!

19 hours ago, MikeO said:

Hi @Ninnot sure i can answer your question directly. What i do know is that i know several nurses that wear compression stockings they help with leg fatigue most have to work 12 hr shifts. I have worn these just after my bypass surgery but was due to the edema. I have seen relief leg wise but is contradicted due to my health conditions.

Hopefully a site admin can answer your question to the  hyperadrenergic pots constriction. I did not get my question answered regarding nOH and POTS

Regardless take your health care into your own hands and due what makes a difference. I would also consult your DR before making changes.  

Thanks Mike0 for getting back to me. I'll just keep wearing them as I do feel like they help.

Do people with hyperadrenergic pots wear compression stockings. Just wondering as I'm sure I'm hyperadrenergic pots but I can't be without compression socks. Tried it not long ago, started walking for 2 mins and was in a mess. I thought because hyperadrenergic pots is too much constriction the compression socks would cause more constriction...am I wrong?

Yeah so true that knowing your limitations does stop them. Wonder if mine was too much vaconstriction, my blood pressure use to shoot up prior to a seizure. You can feel the adrenaline powering through your body beforehand as well. Got that under control....just wish i could walk further than I can. But again if I keep pushing to walk I'm back to having a seizure again. I won't go in a wheelchair or a scooter either, sometimes I wish I would.

Why am I reading about so many people having non epileptic seizures with pots and no one is connecting pots with non epileptic siezures. Makes you wonder how many people with non epileptic seizures are undiagnosed with pots. Definitely a connection here. Since I've stopped pushing my body so much my seizures have stopped and a few other things I realised were causing them I avoid now. 

On 9/23/2021 at 2:36 PM, Nathan said:

Hi, several times I had symptoms like chest discomfort, sweating, breathlessness, nausea, fatigue, malaise mimicking cardiac arrest while climbing stairs. Is it due to POTs/dysautonomia or due to some heart issues Doctors are not able to diagnose? Can somebody please reply. 

Thanks,

Nathan

I really struggle with stairs because of pots. I haven't got any heart issues so don't worry something is wrong  with your heart. Do you struggle with just walking as well? I'm so exhausted from walking and only seem to be able  to walk for a few minutes before I start struggling. Its so frustrating having all these limitations.

I'm sorry pistol you have had such a hard time. This virus is brutal! 

I also have a shark cordless. What i love about these cordless hoovers the battery runs out after 30 mins so you can't over do it because it runs out on you! 

Same with me. On beta blockers but all my others symptoms are there - fatigue, brain fog. It's the walking with me that's crippling me. I just can't walk far without everything going nuts. I got to keep sitting down and I just don't want to live like this. Walked from the car the other day to the school gates to pick up my children and my whole body started shaking so had to lie down in the hut (very embarrassed) everyone asking if I'm ok. Someone had to call my dad to come and get me.

Yes I suppose that makes sense. Wish I didn't have to take any of it. 

Anyone else get a flare up after contraceptive injection? Its the depo provera I have. I haven't felt right for over 2 weeks now after having it. I was getting good & bad days....but all bad last 2 weeks. I know the depo is progesterone. It seems to happen everytime I have it but not sure if its a coincidence