DizzyPopcorn

Hey everyone!

Does anyone have on here have any kind of reptiles?

I do! 8, to be precise. I have :

1 Bearded dragon : Aurore.

2 Painted Agamas : Devil and Bandit.

4 leopard geckos : Kiwi,  Rainbow, Sunshine and Midnight

1 Urosmatyx Ornata : La petite tortue "Translate to 'The little turtle'"

I can share pictures if people are interested!

23 minutes ago, Delta said:

@whoami,

I am so sorry about your Mom, and I hope you find much comfort in happy memories of her.  Your questions are very good.  I can tell you that in the month leading up to my first intense symptoms, I was under some of the worst stress and worry of my life.  Looking back, I had other things going on for a couple of years before that I couldn't explain but just kind of blew off, such as intolerance to heat when heat didn't used to bother me.  In my case, it's hard to think that the worry didn't play some part in bringing it on "full on".  I don't know much about RSD but I do know that dysautonomia can be familial.

Thank you for the kind words. Even typing this while thinking about her bring me tears to my eyes. It was literally the worst experience in my life, because it was 1) the first time dealing with mortality, and 2) I accompanied her during her worst symptoms, alongside my father. I was the one to call 911 when she was convulsing on her wheelchair because of her brain tumor. I was holding her with me, crying just praying to whatever exists (im agnostic) frees my mother from her pain and problems. Unfortunately, the prayers were not enough and she had to die a horrible and painful death. 5 months before assisted suicide was legal in my country. Go figures.

Sorry, i had to vent a little bit. I still have that one on the heart.

In any case, if dysautonomia is familial, it seems that there's a good chance i was unlucky enough to have that gene passed to me :(. Hopefully not, but its difficult to think positively when you feel weird all the time.

I thought this kind of stuff (death, medical conditions) only happened in movies. Guess they're real

Thank you from the bottom of my heart. How are you feeling nowadays after being diagnosed? Better?

Anyway, yes my main problem is that im panicking / feeling nervous all day. Therefore, my appetite tanks and i feel nauseated all the time. I have not been diagnosed with anything. I'm in the process of changing Anti Depressants (from Lexapro, to paxil). I was on 15mg of lexapro daily and i think both the withdrawals of the lexapro and the new med (paxil) are causing me to have problem with my appetite, on top of having me nerves being pulled (constantly nervous). I'm scared constantly that my heart will stop because of my symptoms (high heart rate, etc) (despite having every heart related tests on the planet telling me otherwise). It has been such a long journey since the death of my mother :(.

On top of all that, i'm crying all day. I truly feel like a teen girl atm (i'm not downplaying what it feels to go through these feeling as a young girl, just that its how i feel atm).

I will do what you told me and try to not feel panic just because im not eating.

I am in the process of pushing for neuro referrals at the chum (montreal research institute). Apparently there is a neuro there experienced with POTS and other form of dysautonomia (maxime lamarre cliché).

Hopefully i get better soon, this is killing me 😐

In any case, thank you very much for the support and have a good day

Greetings all,

I was just wondering, my mother had Reflex Sympathetic Dystrophy (Complex Regional Pain Syndrome) for 14 years, before dying in 2015 of cancer (terminal, metastasis). She finally rest in piece, pain free, because she was taking upward of 30 pills a day just to function properly. Still, her courage in difficult time and her rigid education shaped me to become who i am today, and i'm grateful for that. A lot.

My question is 2 fold.

1) Can her death (which was a huge trauma for me (even to this day), both mentally and physically), cause pots? My symptoms began about 1 year after her death, day for day.

2) Can her form of dysautonomia mean i was genetically predisposed for pots or other form of dysautonomia?

Thank you and have a good day,

W

Hey all,

If you've seen my previous thread, you know i've been feeling unwell for a few weeks.

Since last weekend, i had trouble eating anything at all. I still keep up with water, but i know that skipping meals or not eating at all is not good, since i will probably start lacking minerals and go further into a negative feedback loop.

My question is : What can i do to eat if i'm currently anxious and depressed about my situation? When i eat i sometimes feel full / nauseated.

Thank you for the support and i hope you are all having a good day

Does allergies automatically equals an MCAS diagnosis? Or you need to have severe symptoms following the consumption of a certain item?

8 minutes ago, 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!

 

The main problem, i feel, is that i'm borderline on the heart rate response. My exercise response is crap too :(. 
But i will acknowledge with you that it might be something else. I'm seeing my GP this Wednesday and will push for more testing + neuro appointment.

3 hours ago, bombsh3ll said:

That's a shame, I hope he is still looking!

The triptans are probably not for me, as they cause cerebral vasoconstriction plus my headaches are not migrainous, however I am considering naproxen which is another NSAID like diclofenac (I had to look up what cambia was).

Good luck with the rowing machine! I would really like to try one too without the massive cost of hiring one - 4 weeks at £65 pw is the minimum hire I think - and then find that I just can't use it at all. 

There is a gym near me which has the concept 2, but I know they have to call an ambulance if someone passes out, which would be really embarrassing & they probably wouldn't let me go there again. Still, it might be worth it just for a trial to decide whether to hire one.

B xxx

You are far more courageous than i would ever be.

26 minutes ago, yogini said:

Most of us with dysautonomia when symptomatic spend all day in bed or on he couch.  Badminton wouldn't be an option - we are lucky to make it out of bed to go to the bathroom without feeling ill. What you are describing sounds quite different, so you may want to consider other causes in addition to dysautnomia.  I hope you are able to find a doctor to bring you to a diagnosis. Hang in there and hope you feel better soon.    

Wouldn't i fit technically in a "mild pots" case?

4 minutes ago, yogini said:

Most of us with dysautonomia when symptomatic spend all day in bed or on he couch.  Badminton wouldn't be an option - we are lucky to make it out of bed to go to the bathroom without feeling ill. What you are describing sounds quite different, so you may want to consider other causes in addition to dysautnomia.  I hope you are able to find a doctor to bring you to a diagnosis. Hang in there and hope you feel better soon.    

Thank you very much for the support ! While playing i got short of breath quite a bit and had to take a few pauses.

Still, you may be right! I will have to consult again and push for more tests

27 minutes ago, jklass44 said:

I find that my symptoms can be very much like a rollercoaster and inconsistent at times. Some days, I’ll get symptoms immediately upon standing (HR/BP increase, dizziness, nausea) but then they slowly start to subside - not go away but become more manageable - and then there are other days when I’ll be standing for 20+ minutes before I see a dramatic increase in HR, BP, etc which then forces me to lay down. 

Did you end up making another appointment with your GP? Perhaps you can ask him for a referral to someone who might be more helpful?

Hi, yes i did today. Im seeing her Wednesday. I will push for a neuro referral.

Right now im feeling better. When i crashed after trying to play badminton and being short of breath, i thought i was dying! But lo and behold im still there.

Its just that ive never felt like this before, ever.  When i was in college, i didnt have to pay attention to what i was doing and my heart rate was recoveting fast. Nowadays, if i push too much, it can take upwards of 30-40mins to recover completely. Just weird.

Im standing atm, still. Heart rate is 92 and isnt increasing. No symptoms. But when i stand or bend, i do get symptoms.

Earlier this morning, standing was causing dizziness. Upon taking my bp, both standing and sitting, it was normal. 130/80

Im feeling so weird

45 minutes ago, yogini said:

If you have fatigue and dizziness without HR and BP issues or orthostasis (increased symptoms when standing), it might make sense to look into causes other than dysautonomia. 

I just played badminton with my father and i completely crashed. Im fatigued, short of breath, nauseated.

You mention getting checked for other things but, ive been checked extensively for heart related issues and nothing came of it. Echocardiogram, holter, you name it.

I get symptoms mostly when bending and standing, and upon standing.

Right now the shortness of breath has subsided but im not feeling so well. Ive been to the er countless time but they never found anything heart related either.

I dont know what to do

12 minutes ago, yogini said:

Your heart rate seems totally normal (in the normal range, not indicative of POTS no symptoms when standing).  Checking it might be making you worry needlessly.  Changing antidepressants is rough on the body, so that also might be factoring into it.  Hope you feel better soon.

Thank you very much yogini. I really appreciate it.

Unfortunately this morning its quite rough in terms of symptoms. Im dizzy when standing and i get out of breath when taking walks.

Yet, when i took my blood pressure standing (with my arm at the heart level) it was fine (130/79). Same thing sitting.

Not sure what to do with this. Im still lightheaded all the time and tired.

Anyway, thanks again . It means a lot

I think ill go to my gp again this week and require a neuro appointment. I cant live like this.

On 8/4/2018 at 9:57 PM, StayAtHomeMom said:

You can ask for an echocardiogram as well. It will check the structure. You basically lay on a table and they ultrasound your heart. I had that done and it helped a lot for piece of mind. Even though my body is freaking out I not longer feel like it is just going to quit. If anything explain to the doctor that the unknown is not helping your anxiety and maybe they can help you explore that unknown to help you work your way through your problems. 

Once my PCP understood the way my brain worked she became much more willing to negotiate testing to help calm my nerves. I have RA testing done every year because my mom has it and I have some early symptoms. Just basic blood test and I don't worry about it because I know we will catch it if or when it starts. 

So if an echocardiogram show your heart as structurally healthy, does that mean that pots in general (heart rate wise). Does not pose a bigger risk than say, anaerobic exercise?

On 6/14/2018 at 6:59 PM, yogini said:

In healthy people the HR goes up for a few seconds or minutes then comes back down when you stand. In POTS it is a sustained heart rate increase so 15 min or30 min after standing you would still have tachycardia. This is the very definition of POTS.  If your HR doesn’t stay up for more than a few minutes then you don’t have POTS, but might have another form of dysautonomia.

What other form of dysautonomia for example? OI?

I cried a bunch this morning. Now when im standing im around 90-95 bpm. 75-80 laying or sitting.

Fortunately, i dont have symptoms once im standing.

My doctor prescribed a new antidepressant so im in the process of switching to that one. Its a bit hard. Im shaking so much at moment

Im so thankful this forum exists

Just now, RecipeForDisaster said:

I don't even have anxiety or a label thereof, but I swear I could go in with a spear through my head, or a burst appendixes, and would be told "it's perfectly normal ", "you just have to adjust to life this way", and "it won't last forever". I lost 13 lbs unintentionally, down to the lowest weight I've ever been, and was told "it would be normal for you to be depressed ". Oh, that's the MOST likely reason, huh? Not because I feel too sick to eat and worse after? Btw, if I were depressed I'd eat everything in sight, that's more my style.

 

How does one get doctors who actually CARE? No diagnosis here either, just annoying stuff like "idiopathic hypotension", "positional dizziness"...

I feel you 100%. It doesn't help that where i live, i can't really choose my doctor either unless i pay out of pocket, which costs a lot.

I wasn't really that bad until i had this episode. I was more than able to deal with the few symptoms i had when standing from my chair sometimes or bending. But right now im feeling horrible and cant even sleep correctly.
 

I do not feel like a 26 y.o anymore. If it wasnt for my father helping me and being so understandable, i honestly think i wouldve given up on life a long time ago.

10 hours ago, yogini said:

Have you had a sleep study?   Maybe you have sleep apnea?

 

I wish I'd get one but apparently its not required because i have anxiety.

I swear, i think i could come up with actual stroke symptoms and they would still tell me its all in my head (i wouldnt do that, just saying as an example) . Once you've been labeled with an anxiety diagnosis, it seems you are done for.

I should really ask for more tests

On 7/10/2019 at 6:42 AM, RecipeForDisaster said:

Absolutely. My temp is 97.2 or even lower at baseline, and I feel extremely feverish and flushed at 99. But it's always dismissed as "normal" when I'm sick. Then how is 97.2 normal?

You mean 99 is being dismissed as normal?

17 hours ago, yogini said:

Sorry you are having such a hard time getting a diagnosis.  I've been told by my doctor (and have generally read) that a HR of 60-100 bpm is normal.  It is a healthy response to have an increase from sitting to standing of 15-20bpm.  So the heart rate you're describing may not be related to what's causing you to feel ill right now.  The low temperature does sound concerning and I think a doctor would have to take you seriously..  Maybe if you make an appointment and just bring that up, that would push the envelope?  Also, if your doctor isn't helpful maybe there is another one in your area you could switch to?

Thank you for your concerns yogini You're right, but my temp is now fine. I took it this morning and it was also fine for a sleep temperature

Right now im having insomnia. When om falling asleep it feels like im losing consciousness and gaaping for air. My anxiety is through the rough. Both my oxygen heart and bp seems fine... I have nausea also.

Im so tired but cant get to sleep. Aaaaaaaaa this is so annoying

Hi all, sorry for acting this way. I think i had a panic attack at work. I went home and feel better. Took my temperature and its 98.6! Ugh.

My body is aching all over the place and my legs feel hot. I dont know whats going with me anymore. If its even real... Does that make sense?

I wish you all have a good day, i think im going to nap for a bit...

I'm starting to feel tired and weak again... With the cold... I don't have access to a thermometer for the next 3 hours in order to check my temperature.

Should i go to the ER? God this is awful.

8 minutes ago, Pistol said:

Regarding the low temperature: I had that happen to me once and it ended up being something as simple as needing a new thermometer. What type of thermometer do you use? I only use oral thermometers since I have found that they are more accurate than the forehead scanners. Mine had run out of battery power and a new thermometer showed a normal temp. 

That seems pretty logical actually. Its an Oral thermometer, cheap one from the local pharmacy. I could probably get a new one and check the temp with that one!

Quote

This unfortunately is a common occurrence in dysautonomia: all tests come back normal but we are feeling so terrible inside. That is why it is called " the invisible illness". I have been labelled with a non-medical name often until I found informed and understanding experts. Do not let them tell you that you are OK when you know you are not!! I agree with @MomtoGiuliana - have your general practitioner do orthostatic testing to confirm your intolerance to being upright ( which CAN cause most of your symptoms ). Then I would sk for referral to a specialist - no matter how far you have to travel to see one. I am sorry you are feeling so unwell - get better!!!

I really need to push more. The problem is, i often have the urge / feeling to cry when talking about those subjects and they automatically label me has having depression / anxiety. But that is not the frickin case!!! I'm just so tired. I just want my old's life back!

@MomtoGiuliana

Does my HR change from sitting to standing => Yes, but not a huge increase compared to other members here. 10-20 beats at most, does not increase indefinitely and i can walk fine. My symptoms are not really worse on standing, i'd say. I do get an increase in adrelanine standing though, but this has changed a lot since i take an SSRI

Have you had a tilt table test => No, because i need a neurologist for that or a cardiologue, and for that i need a reference from my GP. And my GP have said that there's no problem, therefore no need for tests.

Can you have your general practitioner check your hr and bp sitting and standing, at least? => Well, i did tell them what it does when standing, but both the increase and adrenaline shots seems to fall in the "i am just anxious" or "that's just the way it is for me".

Right now, what scares me the most is my temperature. I'm at work atm and i'm just shivering. Feeling unwell... but generally "ok". I can function.