Nin

I'm really struggling mentally using a mobility which I need for longer distances or when I know I'm gonna need to stand for long e.g picking my children up from school. The problem is how people are treating me like I'm an alien! Most people can't even look at me.  Earlier today I went to get bloods at the hospital, got off my scooter to walk to the toilet a few meters away and when I got back on my scooter the girl sat there laughed at me. She obviously thought can you walk to the toilet and then get back on your scooter like u even need that.

I have never felt that I'm different to anyone else in my life until now, how everybody either stare's at me or awkwardly won't look at me. One of the mothers even laughed at me as she was walking towards me, again like seriously u need to be on that.

I feel like I can relate to a lot of people now like even down to someone who is a different race, religion etc because you're made to feel like you're different, because people can be so judgemental. 

I just don't know how to toughen myself up with this

5 hours ago, Pistol said:

@Nin I take autonomic ( also called hypoxic ) seizures, especially during or right after anesthesia! Mine were diagnosed during a stay at an EMU when I was hooked up to EEG and telemetry and had an event. They are thought to happen when my vessels constrict, therefore not allowing adequate blood flow to the brain. Medications, a slow lifestyle and frequent IV fluids have stopped them for the most part. There are certain precautions the anesthesiologists take now, including IV fluids before and during surgery. 

The weird thing with these is the movements before it happens. The nurse asked if I had tourettes. Nothing shows up on the eeg and the paramedic said this is not a seizure and he's never seen anything like this before. Even eating peanuts trigger it and I got no explanation for that at all. Just be nice to find medication to stop it!

On 7/2/2023 at 12:58 AM, Asmaa said:

My Symtpoms continue to get worse and more scary. I've gone from feeling tired, dizzy and nauseous to having scary out of body experiences.

Last night my paresthesia got so bad that I felt I had all these insects crawling over me I thought I was losing my mind. I've been getting body trembling, extreme anxiety, feelings like I'm losing my mind, my heart pounds, my arms feel weak and its like my body is trying to jump out of my skin. I don't know how much longer I can take this. I really think that I'm either going to end up with a mental health crisis or my body is just going to shut down and die.

I just want to escape this nightmare and I dont know how. The medical system expects someone to wait months for an appointment but what does a person do in a crisis?

Ive been patient for a year waiting for things to improve but its getting worse and worse. I cant take this anymore

I just wanted to say I feel you. The fact you've gone back to your gp it should speed things up. Don't lose hope. It's just so unfortunate how long we have to wait, I'm in the UK and pots waiting time is awful

I had what I thought were non epileptic seizures and now told it's not its likely dystonia! I had an operation 2 weeks ago and it's kicked off big time. Basically they start off with weird body movements and then whole body spasms. Had 6 after coming out of the operation, then 1 at home so my mum called an ambulance. Then gave me diazepam through the veins which stopped it within a minute. I've never had anything given to me that has stopped it.

Seems like my pots has gone crazy since op, even sitting up is triggering this and standing up and can't get enough air into my lungs. 

On 5/29/2023 at 12:48 PM, Sarah Tee said:

You can estimate your blood volume and estimate how much you might be down by.

https://www.mdcalc.com/calc/4065/blood-volume-calculation

I can’t remember what the average percentage under is for people with POTS. It should be mentioned in this lecture:

https://vimeo.com/540671549

I think, for an adult, 500mL would be the minimum worth bothering with, unless the person was quite small.

It might take a few sessions to find the right speed for you. Hope it helps!

Thanks for that! Yeah it's worth trying. Need to get some money together and I'll give it a go.

13 hours ago, Pistol said:

@Nin I get 1 liter Lactated Ringer Solution over 4 hours. Saline works also, but LR works better for me. Personally I dont think 250 ml would make much of a difference. 

Do you think 500ml would make a difference? I don't think I could ask for more as I just said it's for dehydration. If I start telling him about pots he might say no to giving it to me. How long do you think the affect would last for me?

Just phoning round privately for saline infusion (which I assume is IV fluids) and he asked do I normally have 250 or 500. I've never had it for pots so I don't know. Can anyone tell me how much you have for your pots? Also how long do the benefits normally last. Just want to give it a try as I'm desperate 

I just can't get it here in the UK through the nhs, so had to go private

On 4/26/2023 at 7:34 AM, Diannna said:

I have never had COVID , but my D-dimer has been elevated for over 7years now and they say it's because of my fibromyalgia. Clots in my lungs over 20 years ago. None recently, but high d dimer. I just say well that is the weirdness of being me.

I've been diagnosed recently with anti phospholipid syndrome which causes blood clots. I also have pots and anti phospholipid syndrome and pots are connected. Just wanted to let you know because it's something to think about

I never drink alcohol usually, I just took the chance that night. I don't think ill take the chance next time!

I had about 5 bottles of beer going back 3 weeks ago and I have had a bad day everyday since. Can just once night of drinking cause a flare up in pots? I thought surely it can't do that, once its out of my system (say a couple of days after). Anyone else experience this?

11 hours ago, Pistol said:

@Nin - I have had many operations since onset of POTS, and anesthesia CAN have some set-backs for dysautonomia patients. The most important thing is for them to give you IV fluids BEFORE the operation! I have always done well with that, as long as they hydrate us with IV fluids before and then monitor us afterwards in a recovery unit I usually do well, no special anesthesia needed. My anesthesiologists already have it marked in my record to give ample fluids prior to the procedure. 

I hope all will go well for you! 

Postural orthostatic tachycardia syndrome and general anesthesia: a series of 13 cases (dynainc.org)

I did say that I will probably need extra iv fluids, but will mention to have it before op as well. Thanks for the reply!

I'm having an operation soon and the last time I went under it made everything worse (pots symptoms). Is there anything different i should have because of pots? I spoke to an anesthetist and she was asking my opinion what might help. How are my supposed to know! Have they got to tweak the anaesthetic?

1 hour ago, mehaller said:

Everything backfired yesterday.  I took my second 2.5 a couple hours early - miserable.  Standing BP was 150/110.  I've never had my BP go that high, not even during healthy guy stress tests.  Headaches, more lightheaded than pre-meds.  My heart pounded all night - got two hours of sleep.  I'm wasted.  Oy

Oh no that's terrible! Its weird because my BP is on the low side 95/56 and midodrine wasn't bringing it up so I don't know why I was having these weird twitching, numbness, pin and needles episodes. I was feeling really faint as well. I just keep questioning was it something else causing that and should I go back on them. Maybe my BP was spiking from them in the night when laying down even thou I took them hrs before. Thats a shame for you as they seemed OK at first

On 7/3/2022 at 2:12 PM, mehaller said:

I just started midodrine a few days ago.  Very low dose, e.g. 2.5mg two times per day, not to be taken at least 4 hours before bed.  The first thing I noticed was the first labled side effect - itchy scalp.  Not itchy, but tingling.  I have also noticed that I am on the edge of leg spasms, so I am keeping my leg cramp (quinine) pills handy.  I am about to ramp up to 3 times daily.  I am monitoring my BP, and it is up, but not dangerous at all - so far.  As for results, I have managed to spend a couple hours on my feet without crashing.  Not active standing, just putzing at my shop bench on a project a stranded over a year ago.  I'm still ight headed and won't go near my table saw, but I sense an improvment.  I was atypically exhausted after yesterday's shop fun.  The warnings are not to be supine while the drug is "active" (within half-life).  So, I did anyway with my BP cuff at the ready (hey, I'm curious).  And sure enough, my systolc BP jacked to 145 from 115.  Okay, I can work with that - back to my trusty old IKEA POANG.  Another observation that I will call positive is that my legs are tingling.  i don't equate this with pain as much as I do stimulation.  I was diagnosed with adreneric hypotension.  Those little small fiber nerves just weren't getting the message, or, if they were, they were giving me the proverbial finger.  

My gut feeling is that it's going to work once i balance dosing.  What I need to learn is what happens to BP if I get physical, e.g. mowing and weed eating.  I am curious about modulating dosings, e.g. more if planning to be outdoors and active and less if housebound due to weather or ... old and lazy.  I cannot put my legs up on an ottoman or recliner when this drug is active - and I've found myself "restless legging" e.g. flexing calf muscles, twisting feet at ankles etc.  

Wooops, sorry about the long winded ramble.  

Make the best of your holiday.

 

Sounds like its working good for you. 2.5mg didn't do anything for me and only on for 5mg for 5 days so didn't really get to try. If I keep getting these episodes maybe will try again 

Just now, Nin said:

I have low blood pressure so I thought I would need a constriction type med am I wrong? Before I have seizures my blood pressure does go up so maybe being on something that would take it up more is not for me because of what happens before a seizure. 

Is there anything else they can try for me? I've tried salt tablets, Fludrocortisone. They won't offer iv fluids in the UK. I feel like they're going to say we can't help anymore. I know they're going to also think Midodrine should have worked for me and can't get terrible side effects just the normal ones like headache, dizziness etc

9 hours ago, Pistol said:

@Nin - Midodrine is mostly used for POTS types that suffer from dilated blood vessels. I have problems with the vessels constricting and cutting off blood flow, causing seizures like yours. I was put on Midodrine early on in my illness and it did not help me, actually it made me feel worse. When I began to see my autonomic specialist he told me it was the wrong med for my type of POTS. I was started - in addition to many other POTS meds - on a calcium channel blocker, which dilates vessels, and that has greatly improved my HR, BP and circulation. 

I have low blood pressure so I thought I would need a constriction type med am I wrong? Before I have seizures my blood pressure does go up so maybe being on something that would take it up more is not for me because of what happens before a seizure. 

I started midodrine and to be honest didn't feel any different. While I was on them I woke up with my left side of body going numb and this happened twice again. Before this happens I feel like my bloods being cut off, pin and needles then the numb. The other day I just started having spasms in body and left side of face. I stopped taking them after that and haven't happened again since (stopped about 2 days after taking them). 

Just wondering if anyone else has had a bad experience from them? I know the pots doctor is going to say no way its midodrine they don't cause crazy symptoms like that. 

I'm wondering if midodrine is causing this. Since taking it I can't stop twitching, getting pin & needles. 

1 hour ago, MTRJ75 said:

I've often gotten fully body cramps/pins & needles/body jerking/electrical-like shocks when trying to fall asleep. It used to happen much more often than it does now. Is there anything you did or ate that day that may have over-stimulated your system? 

I did do some squats before I got into bed. I try to do some just before I get into bed. Haven't since I'm too scared. This Haven't happened before 

12 hours ago, Pistol said:

@Nin this sounds very odd to me, should you go to an ER?

My mum phoned an ambulance and they said 7 hr wait, so my dad drove me to the a&e. They didn't have any concerns (I did) all they did was test for infections weirdly. The doctor started going on about my non epileptic seizures and asking am I stressed. Im sick of them blaming everything on the non epileptic seizures and thinking everything that happens to me is stressed related. I've never told them I'm stressed. I have tested positive for antiphospholipid syndrome which can cause mini strokes, they didn't want to hear it.

I was awoken with my chin going into a spasm, then my left side of my face gone numb, then my left arm numb, then my left leg. I laid there whst felt like 3 mins and ran into my parents to wake them. That night I was getting twitches all over my body. The twitches have been intense the past 2 weeks they feel like they're going 24/7. Since then Ive woken a couple of times not with numbness but twitches, pins and needles and I'm just stuck like I can't get up. Anyone else get these things happening? Its seems this happens as I'm about to go into sleep like the 1st ten minutes 

On 6/9/2022 at 12:41 AM, ramakentesh said:

Hi all - one of the new and very strange symptoms im getting at the moment is this feeling where as soon as I dose I fall straight into an utterly bizarre dream with random things going on or my leg will twitch and ill jolt wide awake. This goes all night and is accompanied by continual adrenalin surges. Anyone relate? Thanks

I'm having vivid dream lately and my twitching seems to be all over. I've been on midodrine for 4 weeks so don't know if it's to do with midodrine (only the dreams not the twitching)

Yes its trying to convince them to look into it. I suspect mine is a histamine intolerance. They just said we don't offer testing at our hospital so thats the end of it. Its mad how you can have so many things going on and it could be multiple different conditions and you're just trying to figure things out for yourself.

8 hours ago, ramakentesh said:

Yes there does seem to be a connection - what neurological symptoms do you think are being caused by APS?

I have weird movements going on, like throwing my arms around, facial grimacing, my body just goes all weird. Seizures, really off balance, constant twitching all over but not face. I suppose the lack of blood flow with pots and sticky blood with antiphospholipid syndrome my body is struggling. Being upright and active is my worst trigger with these movements then followed by a seizure 

Oh yeah food is definitely a trigger and I was thinking about allergy etc. I had an allergy test everything was negative, so bit baffled to be honest. I've eaten nuts all my life, now they're triggering me, even toothpaste so I figured out which ingredient in the toothpaste and fine with this one I got. I even reacted to the mould spray the other day (mind u I didn't have a mask on) but that stuff wouldn't have done that back in the days.