DizzyPopcorn

1 hour ago, Scout said:

Such a good attitude to have, Pistol! So important to stay positive through all this.

I figure, there's no point being angry at what we cannot change. 

I've definitely had the anger, very much so, but it honestly just made me feel worse anyway. It's a poison. We have to focus on the wonderful things we can do, however small they are.

I've recently taken up crochet because it's something I can do whilst sitting or laying down, and that is bringing me joy, for example. Simple things too like sitting out in the garden, getting some sunshine, having a cup of tea, watching films / tv shows that I love. Cuddling my dog etc. 

We lost a lot from this illness. There's no denying that. But I think staying angry and always asking "why?", means we just lose even more. It means we miss living in the present. 

Over time we learn to cope better and better and as hard as it is, accepting where we are is the most useful. Radical acceptance, as they say. I've definitely found that helped me the most with my mental health, and how it all related.  It helped me see what I still did have in my life. 

Not all is lost. 

I guess im just frustrated and venting. I apologize. I just wish i was normal and not feeling crap everyday.

I like your life outlook as well, although at the moment im really not sure i can adopt it. I agree though that anger will not help me in any way.

Once im diagnosed, my life will be better. At least i wont be "just anxious"

1 minute ago, Pistol said:

@whoami - I did give up. When I became disabled nd realized that there is no cure I became very depressed and did not even want to live like that anymore. But I did not want to not be with my family so I sought help, talked to my doctor and my sister ( a therapist ) and got myself out of that slump. Today I am happy again and enjoy my changed life. I learned to not miss the things I lost but to be thankful for the things I have and can do.  We really can live with anything if we put our mind to it and have a support system around us. 

Do you not have anger? About the unfairness of your illness? I've been getting really angry the past few weeks and i just want to punch a hole in a wall or something (figuratively of course, i wouldn't do that). I want my old self back. I did nothing to deserve this, nor (from what i can tell here on the forums) you either. Im pretty sure you were (and still are) a great mom and everyone around you loved your companionship. So why is it that i was cursed with this mess of a illness? What about you? Surely you do not deserve this.

h***, i never did drugs. I do not drink alcohol nor smoke. Im just frustrated with this thing. It doesn't make sense.

Q - What songs are written for POTS patients?

A - Let the bodies hit the floor (Downing pool)

18 minutes ago, Pistol said:

@lieze - I receive home care services and also have medicare ( due to SSDI ). An RN comes once a week and as needed to access my port and start IV fluids. They would help me with other things too ( since I am home bound ) but at this point I do not need them ( I live with my husband and daughter and we manage ). I did have home PT once but it was useless. I could only stand 2 minutes or become symptomatic, so they had just do exercises lying down. They are valuable to do when I am bedridden, though. 

The good thing about homecare is that when I am in a flare and need help they come out, call my doctor for instructions and I do no longer have to go to the dreaded ER all of the time! It has been one year since getting IV fluids at home and I have not once been to ER or hospital!!! And - despite a few faints here and there - no seizures!! So I am very happy with the home care services in my case. 

Pistol, you have my admiration. I do not know how you can cope with your situation. I would've given up a long time ago if i were you.

16 minutes ago, Pistol said:

@whoami - I know that often when experiencing a panic attack your BP and HR will be high - so if there are NO changes I am not sure that that would necessarily rule out an autonomic event. I hope your appointment with the autonomic specialist will happen soon. In my case I was so relieved when I ws diagnosed by my specialist - it was validating to finally know what I have and that all of this is real. Hang in there!!!!!

Yes!! My birthday is soon, so the only gift i want this year is to get an appointment with my specialist. Do you think I'm being too demanding?! 🤣

1 minute ago, Pistol said:

@Scout - I experience these attacks as well, although not as often any longer. My most recent one was while the nurse was here to access my port on Friday. I was on the floor crawling to get to the bed ( my BP swings crazy like your does in fare as well ) and passed out. Afterwards, in bed, I am trembling, shaking like in a deep freeze all over, teeth shattering, cold hands and feet and -yes, anxiety over my symptoms and that I am going to pass out again. It took several minutes to stop and then it would return as soon as I had to get up. It only stopped after an hour or so of getting IV fluids, I could walk again and my orthostatic symptoms improved. 

@whoami - these symptoms could easily be interpreted as anxiety or panic by an observer that does not understand dysautonomia and the mechanism behind it. And in your case it may be difficult to differentiate b/c you my have both. When you go to the ER make sure that they do not just take your BP and HR lying down. Even when in the ER after a seizure - lying down all is great but as soon as I stand up or go to the bathroom my BP and HR soars ( when I am in a flare ). So - they might think all is well with your vital signs b/c you were lying on a stretcher all day. 

Thats very true, but by the end of the day im almost symptoms-less (including vitals) . I tried to show them my standings vital but they werent really impressed, still within "normal range". => you have anxiety stop monitoring yourself so much. Aaaaaaaaaaaaaah im going to punch a wall.i was laying on a stretcher for maybe top 30 minutes. After i went to through the triage i was sitting in a wheelchair in the waiting room for 5 hours. They took vitals every 2 hours.

My standing vitals are not really that high, thats the problem

11 minutes ago, Pistol said:

@lieze - that is the boat I am in, too. I often choose to stay home - even if I am having a good day - out of fear that it might be too much. nd that is not only considering myself - if I were to go shopping or to a movie with my daughter or even a church picnic - when I crash it's over and we have to go home. My teenage daughter often asks me NOT to go because she knows that most likely I will have to cut the event short.  Plus - the days after nothing will get done b/c I will be in bed.  

So, Lieze - it is maybe not fear of the unknown but rather wisdom of knowing our limits!!!! Be well!!!

I wish such limits wouldn't exists, considering our advances in science and whatnot. It doesn't help that doctors don't even acknowledge us most of the time.

8 hours ago, Derek1987 said:

My first neurologist said i was having fainting issues due to anxiety. Wrongggg. Have you ever done a poor mans tilt table test? Something you can do at home with a blood pressure monitor?

Yeah i did. Plenty of times. I have a 30-40 bpm increase from laying to standing. My bp doesn't change from what ive gathered. But its not perfect testing (beat to beat changes) so im waiting on my appointment with an autonomic specialist. The wait time is a bit long though. (well it is when you don't feel good)

1 hour ago, Scout said:

@whoami I'm very sorry to hear you had that happen! 

My dysautonomia / hyperPOTS attacks feel really similar to a panic attack, and it can be hard to distinguish sometimes, because the release of adrenaline from hyperPOTS feels basically the same as a panic attack, however, I shake and shiver for quite a while afterwards — sometimes hours — with hyperPOTS attacks. 

As someone who has an anxiety disorder as well as dysautonomia, my heart goes out to you, because I know how hard it can be to be taken seriously.

I started to notice big differences between my hyperPOTS attacks, and panic attacks, and was able to extinguish which was which. For example, my hyperPOTS attacks always come after I have exerted myself (even in a small way), or when I am overly tired / in a flare. My BP bounces really low, then high, then back down again etc, and changes a lot with posture changes. Eating salt, as well as fluid loading, helps. 

I hope you're able to get some autonomic testing done. As mentioned above, perhaps do a test at home and monitor your BP, see how it changes with posture changes etc.

I wish you all the best! 

Hey scout, thanks for encouraging me . Thing is, i never had a problem with exercise until today. I started having trouble breathing midway and by the time i reached home, i couldn't calm down. Was having a full blown panic attack and laying down didn't help. I feel sorry for how you are feeling. I don't know how you can manage.

50 minutes ago, lieze said:

I’m sorry you had to go through that scary uncomfortable incident whoami. I’m glad you are okay.

Thank you lieze, hopefully i can have some good days ahead of me 😨

51 minutes ago, Derek1987 said:

Sounds like a faint spell. My arms and hands tingle every time ive had a faint or near faint spell. It scares me so much. But theres so many people that go through it with this disease. The body is just trying to get blood and oxygen to your brain. Its still scary so i know how you feel.

Thing is, im not even diagnosed with POTS yet, but i suspect i do have it. So i still dont know if what i had was a faint spell or just a classic panic attack.

I left the ER 20 minutes ago because im feeling ok now and the doctor will probably just say its anxiety without giving me any test. So instead of wasting my time waiting for another 10+ Hours potentially catching something there ill just head back home and take more clonazepam as needed. Its just that this "whatever attack" took me by surprise and i seriously thought i was going to die. But yeah whatever that was, it was seriously scary.

21 minutes ago, Pistol said:

@whoami - I am so sorry you have to go through an ER trip. I used to have to go to the ER often - my PCP would actually send me there from his office, unless he just admitted me directly. In my case - due to my symptoms of tachycardia, high BP, syncope and chest pains - they always had to do cardiac testing ( which ALWAYS came back perfectly normal ). What ususally was the fix for me were IV fluids - they stabilize my HR and BP and stop the syncopal episodes. I hope all will be well with you, that your tests show nothing serious and that you have kind, compassionate and knowledgeable doctors. Be strong - and be well!!!!!!

Thank you pistol! Yeah so far ecg, bp and heart rate is all ok. I still feel a bit weird? If that makes sense.

Its the first time ive felt like this in my entire life. Before the ambulance arrived, I looked at my father in the eyes and said "please call 911 right away - im dying"

Ugh so annoying. But i shouldn't complain, you've had it a lot worse.

Thanks for the support . I hope that my tests will show nothing serious too!

Im at the ER after an ambulance trip. Went for a walk and when i came back home, i was out of breath, dizzy, heart pouding, etc. I couldnt calm down even laying, i was shaking, had a headache, my limbs were tingling. I honestly thought that i was done for and on my way to die. Well, guess it was just a panic attack. I feel wired atm and so tired its crazy. Im still undiagnosed.

Yay for another 20 hours of waiting time because apparently its not critical and my heart rate is only 90 and my oxygen is fine. But i need a few things to get checked so i will have to wait.

Sorry, had to vent.

How are you guys doing?

13 hours ago, Pistol said:

Thanks @toomanyproblems and @p8d --- I am really proud of me too. And I know I will go sneak out into the real world again - I just will do a better job at scheduling next time!!!! BTW - I am hooked up to my IV fluids right now and feeling so much better.  I guess I might go out of town ...………………...……………….. 

Hahaha, i like your humour. Im proud of you too pistol .

Hey by the way, where does your nickname comes from? (pistol)

44 minutes ago, Sufferer said:

For a normal person, does the heart rate increase temporarily and then drops back to what it was before?

Ive had a lot of discussion about the exact same thing with people on this board. I've tried to compare myself against healthy persons (namely, my coworkers and my dad). My dad had a resting hr of 60, he stood, it increased to 65 then went down to 61. He is fit. One of my coworkers had the same pattern. 70 then 77 upon standing, and after a few seconds, went back down to 70.

That is whats supposed to happen in someone with no orthostatic issues and that is not dehydrated etc.

BUT. 2 of my other coworkers both had big increases in hr upon standing from sitting. Namely, sitting their hr were around 80. Upon standing it went to 110 and it fell back to 90 within a minute. They do not have any symptoms of pots.

My heart is 60-70 laying, sitting is 70-80 and standing is 90-100. Its incredibly frustrating because i do have symptoms most days and upon bending etc. But it's not as extreme as others. Im in the process of getting a TTT done and see if i have it or not. Maybe i have another issue other than pots (i wish) since sometimes i do not have symptoms upon standing.

This illness is annoying, because its not like theres a simple blood marker to be found and boom here you go you have pots. Physicians have to go with your symptoms and your heart rate response to standing only with a TTT.

It also doesn't help that most symptoms look like a big panic attack for some or increased anxiety. It delays the diagnosis.

Overall, even if my symptoms are mild (hopefully it stays that way or im diagnosed with something other than pots) its incredibly annoying to have and have the doctors believe you.

(end of my rant)

On 8/9/2019 at 2:27 PM, haugr said:

No kidding.  I wish these tests were commonly available.

They arent? Surely its not a complicated process

11 hours ago, Scout said:

These are some BP readings from a day ago, minutes apart. It bounces around like this all the time. 

Does anyone else's readings look like this?

I can't wait to see my specialist soon. 

Can't see them either, you seem to be missing a "g" from your .png.

On 7/17/2019 at 6:16 AM, RecipeForDisaster said:

They might if they seemed to have any interest in anything that's wrong with me! I don't know what it will take to make them care, unfortunately. Maybe if I lose another 5 lbs. They definitely believe all of my issues but I think they feel emasculated/frustrated by not being able to find the cause, so they tell me I need to adjust and live with everything . Obviously in many cases that isn't healthy. BP in the low 70s as a new baseline, passing out, not eating for days unless I force myself, plus much more... come on, how does one get used to that? 

I feel sorry for you :(. If i had a magic wand available, i would cure everyone on this forum instantly... There's just no reason for any of you to feel like that.

39 minutes ago, Pistol said:

Dear @whoami - this is a question you need to ask your doctor. All people experience changes in BP and HR with position changes, that is normal. It is also normal for your BP and HR to change during the day as you go about your business. The problem with POTS or NCS is that when we are upright we experience severe symptoms b/c our bodies are not able to adjust to the upright posture. So - to answer this question:

Yes - it is possible that your symptoms are something other than dysautonomia. But the only way to determine that is by seeing a physician experienced in dysautonomia and undergoing testing required to diagnose it. 

Got it - i will keep an open mind while being diagnosed and push for more test

Thank you for your help Pistol.

1 hour ago, toomanyproblems said:

CRPS itself its not a type of dysautonomia. I assumed your mother had a separate dysautonomia diagnosis? 

I related my story to suggest that emotional trauma can cause these types of problems. CRPS is definitely a screw up in the brain regarding pain and wind up,  but its initiation can be connected to emotional trauma, possibly because physical and emotional trauma are registered in the same part of your brain. Perhaps POTS is the same. That was the main point I was trying to make. 

The original place I got CRPS was in a foot where I had several bad ankle sprains over many years but nothing recent and no ongoing pain.  CRPS, as well as dysautonomia are also more common in people with Elhers-Danlos syndrome, which I also have. I've sprained both ankles several times over the years. I don't know why it chose that spot and that ankle but it seems to have initiated due to emotional trauma. I was not able to find out the main site of others who got CRPS from emotional trauma. The study did include close to 10,000 people so it was a good sample. Interestingly, one of the main points was that those people who got CPRS had no more mental health problems before their diagnosis than the general public. Like many diseases, Drs are quick to blame CRPS on psychological issues instead of an actual disease process. This paper handily disproved that.     

No, my mother had no other dysautonomia trouble (that i know of, but she was open about her health, so i'm pretty sure her only problem was CRPS). I was seriously under the impression that CRPS was a type of dysautonomia, since it affect nerves.

She was diagnosed in about 9 months. But most of her knowledge had to be searched on the internet, because doctors were, for the most part, clueless.

EDS is hyper mobility of the joints, correct?

@Delta @Pistol To answer your question, it depends!

If they have been all fed prior to being introduced to each other, it is pretty safe to put them in the same vicinity. (For example, a bearded dragon and a leopard gecko). But if they haven't been fed, the bearded dragon may attack / try to eat the leopard gecko if he's hungry enough since its smaller than her and could be mistaken as prey. Supervision is always required.

Geckos can get together (outside of their enclosure) since they're all female. if i'd have any male, i wouldn't be able to put 2 close to each other, since they're very territorial and will try to fight to see who's the best / this is my turf and the food here is mine. I do not let out more than 2 reptiles out at all times, because should i need to separate them in a hurry, i only have 2 hands. The only exception to this rule is Aurore, my bearded dragon. She's pretty much a potato and if you put her beside a window, you are guaranteed to see her there for the next 3+ hours. Its also easier to baby sit them if only a select few are out, since they're so quick on their feet sometimes when they're spooked or something.

Generally speaking, you cannot house them together, because they all have different temperature, UV and moisture requirements. The painted agamas are currently housed together because they're still small and not territorial, but it wont last long. I will have to separate them eventually, especially if they both turn out to be males.

For the geckos, since they're females, i could house them together, but it's still a risk. Reptiles are solitary in nature, and generally do not like companionship outside of mating. With a human it's different : You provide them with food and shelter, so they associate you with security and comfort. But i can be gone for 3-4 days and they wont be sad that i'm not there. I still take them out everyday though!

@Delta Oh and delta, the one who's most spoiled is my bearded dragon, Aurore :). I always get her comfy for bed time and do a little "Beardie Burrito" with a blanket or something soft. She loves it.

My mom got CRPS in her foot after stumbling over a vacuum hose that was laying around just over a small step between our living room and the kitchen. The tip of her foot (toes) touched the middle section of her foot . Instead of breaking a bone and requiring surgery, it simply bent, causing a sprain that basically never healed and devolved into CRPS. So it was definitely a physical trauma in her case. Her cancer was caused by cigarettes. She smoked for a good 40+ years from the young age of 14.

I feel sorry for you, it must've been hard to deal with all that after a divorce. Not sure how you remained strong in such a situation.

How is it even possible to develop CRPS without a physical trauma? I thought that CRPS was basically your head registering a pain that did not exists anymore?

On 7/15/2019 at 7:13 AM, Pistol said:

@whoami - the diagnosis criteria for POTS can be found in this link

If you do not meet these criteria it may not be POTS but a experienced physician should be able to determine that. Hopefully they will be able to pin point what is going on with you!

 

 

Pistol, i'm very confused this morning.

I asked my teammates at my job this morning to do the test : Sitting => standing.

I was flabbergasted. Every single one of them were around 80 sitting, standing 105 and 110. Everyone felt fine.

Does that mean that the fact i can stand for however how long i want, and that my heart rate being 90-100 is fine while standing??? That i've been worrying to death with this for no reason and that my symptoms are in my head in the end? Or that every single one of my teammates have post.

In fact, while talking to them and being happy, my heart rate lowered to 84 while standing in place...

Is it possible that my symptoms are then simple changes in blood pressure? Or that my symptoms are linked to something else?

9 hours ago, Pistol said:

@whoami -we get freezing cold winters here - I live in eastern USA at above 3000 feet elevation, Appalachian mountains. We have soooooo many snakes here - including Rattlesnakes and Copperheads and TONS of non-poisonous snakes. We also have watersnakes ( very aggressive ) and little ring-neck snakes. Last year I saw a snake give live-birth!!!!! It was horrible - but to someone who likes snakes it would have been awesome. 

That for sure would've been awesome!

Here are some pictures of my babies. Challenge : find the most spoiled reptile of the bunch hahaha

1 hour ago, Pistol said:

I have several garder snakes under my house and a toad under my front steps, as well as a black snake in my shed and several newts from my creek. They are all wild - and I don't name them because I don't like them!!!! I also have seen very rare blue mountain mud crabs in my creek - they are federally protected, so we don't touch them. 

You're so lucky to have them in the wild! Here in canada, since its always cold outside during winter, we don't really have that many species of snakes. I've only seens grass-snakes where i live.

5 minutes ago, Delta said:

@whoami

Knock wood, definitely better than before I was diagnosed.  I mean, it got to the point that I wasn't functional as far as doing everyday things - I couldn't drive when I was having brain fog, dizziness and/or lightheadedness.  Pushing a cart of dog food to my car from the pet store, I became tachycardic and my blood pressure also jumped.  I had to go back into the store and sit for a while and it took over an hour for things to settle down.  It wasn't even that much stuff, maybe 20-30 lbs. of dog food, if that, that I was pushing in a shopping cart.

I still have symptoms, and flares, but I can function closer to normal now than I was able to before I was dx'd.  I definitely think the med has helped and I am grateful.

Part of the nature of this, at least in my case, is that you get an exaggerated autonomic response, which can include feeling nervous physically even when your brain says you're not.  This could be why your nerves are getting so shot.  Honestly, if your cardiac tests came back normal, I would take great comfort in that, if you can - I am no cardiologist, but it seems to me that if your heart were going to stop from all of this activity, it would have already done that!  Try not to let the worry affect the quality of your life any more than the physical symptoms already have.  Do things you enjoy, if you are able, and try to distract yourself from those thoughts.  You've got this.  I am keeping my fingers crossed that you will get in soon to see the neuro who is well-versed in dysautonomia because, as I said earlier, I think this will go a long way towards putting your mind at ease.  

You mentioned nausea - that can be another symptom of POTS.  Before I was diagnosed, there was a stretch where I was nauseous almost every single morning.  One of my mottoes at that time was, "Pepto-Bismol - not just for breakfast anymore!"    

 

 

Hahahaha I love your positive outlook on life, thanks a lot :). I hope too that i get a neuro appointment soon! Your words are really helping me through this

Something funny, however : Before i had my "flare" (ill call it that because i dont know what happened), eating A LOT (and i mean it, like, a large pizza on my own) was actually the best feeling ever. It would seems that whenever i overloaded my system with food, the blood required for digesting was helping me feeling less jittery? My symptoms were relieved and i felt a lot better. Especially heart rate wise.

Also, for the last 4 months, i was on an OMAD diet (One meal a day), so i was cramming 2000 calories in one sitting, everyday. I felt really good on that diet and lost a lot of weight (what i wanted). Went from 250 pounds (im 6'3") to 224 pounds.

But i'm glad you got better after getting on medication! Hopefully (if i do have pots) it'll be the same!

16 minutes ago, Delta said:

@whoami

Would love to see whatever you care to share - I really like the names you have picked out.  We have dogs, a cat, chickens and goats, but have never had a reptile!  Unless you count the small black snake 🐍who visited our side porch a couple of weeks ago!! 

Thank you! I mostly picked their names based on either their colour or their personality.

For example, the painted agama (bandit) is named that way, because he will often snatch a cricket from my hand and then run away with it in his mouth. It's literally as if he's running away from robbing me lol.

I will post some pics when i'm home tonight :)!