DizzyPopcorn

2 hours ago, MomtoGiuliana said:

Because you mention neuropathy I wanted to mention that you may want to have your B12 level tested.  I was found to be low in B12, which was causing mild neurological symptoms along with a severe POTS relapse, last year.  After 6 months on high dose of B12 the symptoms resolved nearly completely.

Maybe a random question, but why is the general population not tracked on a yearly basis for vitamins and whatnot? Wouldn't that prevent many ailments that depends on these vitamins to be balanced? 

8 minutes ago, KaciCrochets said:

LOL I thought I was the only one! I have never been a big fan of video games anyway but my husband and kids are, and I have a hard time even watching them play now. I get so stressed out. Ones like Beat Saber make me feel like passing out, I can't process fast enough anymore to even watch it.

I kid you not, not a long time ago i bought a vr headset for my computer. I played maybe twice and now i cant use it... Im a big gaming nerd. Im (well... Was for now) a software developer and played tons of games on pc, modding them etc. Not being able to play sadden me so much. At least i can watch them on twitch.tv. 

I hope that you are still able to do activities with your family.  There's nothing worse than being isolated with an invisible illness

3 hours ago, Veta said:

Hi guys,

I was only diagnosed with this today but have been having symptoms for about a year. Along with pre syncope, vertigo, shortness of breath, brain fog, headaches, irregular heart beats, chest pain, low blood pressure etc I noticed something else that only started recently.

When I’m in a mildly stressful situation (ie confrontation with a friend) My heart starts going crazy and I get an overwhelming need to run or immediately leave the situation, then I start shaking and usually crying. Before I was diagnosed I thought it was anxiety attacks however I never used to get them and they come very early on, like situations I used to be able to handle quite well.

Can anyone else relate or have any idea why this is happening?

 

Undiagnosed but i can relate as well. For me, at least right now, passing a car and accelerating generate too much adrenaline and i feel short of breath for a few secs. I cannot play video games anymore unless they're tame and nothing exciting happens. Definitely sucks. 

I hope all of this goes away once im better abd medicated 

2 hours ago, KaciCrochets said:

Thank you for your replies. My weird head space is definitely a symptom and not a reaction to my symptoms, and it went away when I took the hydroxyzine. Maybe it has something to do with inflammation and intracranial pressure? Yesterday I salt loaded too much and got a major headache and felt so emotionally stressed I had to cry. Once I drank enough water to ease the headache the emotional symptoms went away, too. 

The more I read on the internet about the human body, the more i realize how little i know about everything. We're so complex and all have our own particularities despite being the same species. Its crazy. But I'm sidetracking here... 

I hope you get relief in some way in the coming days

Sorry for reviving such an old topic, but i experience the exact same phenomenon while im falling asleep. I feel like in about to pass out and every muscle stop working. This happens 5-6 times in a row until i somehow fall asleep. These episodes started after switching from lexapro to paxil. I did not have those before. 

Does any of you guys experience it as well? 

Im not sure in my case if its related to a pots flare (still undiagnosed) but I've been definitely more anxious and depressive when my symptoms get worse. I start feeling hopeless, that in going to die and there's nothing left for me yada yada yada. It doesn't help that I'm tired all the time and have trouble falling asleep. 

But honestly, the mental side effects are nothing (for me at least). Give me that instead of these stupid *** symptoms that make doctors look at me like im a freak.

Im also having some trouble with my allergies at the moment... Definitely annoying

6 minutes ago, Pistol said:

I have found that when I am rested and balanced I sleep well, even have dreams. When I do too much, or am triggered, I sleep poorly. I have to take naps every day or I will be too wired at night and not be able to fall asleep. so - in my case getting hyper is the reason for insomnia - if I can avoid hyper then I can sleep. If tht makes sense. 

That does make sense yes. Its similar to someone going to bed thinking about future stressful situations. The stress make him/her temporarily "hyper" and unable to sleep. 

16 minutes ago, p8d said:

There are some recent studies showing anticholinergic drugs (it’s a class of drugs) and benzodiazepines increase the risk of Alzheimer’s significantly.  Google it and you will find the articles.  I really liked the mitrazapine, I slept 8 hours straight through frequently.  Not always but probably 4-5 nights per week.

Oh well. So much for me taking klonopin as needed lol. Right now its the only thing that helps me. 

4 minutes ago, Pistol said:

Believe it or not - I once tried to give an article about POTS to one of my docs and he said: " Sorry - I don't do chapters ". I was wondering - well, how then did you make it through medical school? He said that I was his only ever dysautonomia patient and if there were more he might read up on it but since it was only me …. I still have not forgiven him! 

What the h***. You're right about not forgiving him. 

11 minutes ago, p8d said:

I stopped taking mitrazapine for sleep because of the new research on anticholinergics and Alzheimer’s.  My dad and half his siblings had it but I have tried a couple of other sleep meds since and I got 3 hours sleep last night.  Very reminiscent of when I first became ill.  I did screw up my guanfacine dose yesterday though so that likely contributed.  I feel soooooo much better with decent sleep.  I am going to do more research on mitrazapine though as I found one article that said it has no to little anticholinergic effects.  It’s a very interesting drug for us as it hits different receptors than most other sleep meds.

Pardon me but, what is an anticholinergic effect?

13 minutes ago, p8d said:

Thank you so much for posting this!  The findings are exactly what my Celltrend tests showed.  Alpha a-1 autoantibodies.  My first improvement came from Plaquenil and my recent improvement is from SCIG, both autoimmune drugs.  Plaquenil did nothing for my BP/HR and I am not yet certain about the SCIG is helping those either but fevers, muscle aches, joint pain and swelling, fatigue, digestion are all better.  Now if I could find something for the insomnia that isn’t an anticholinergic I would be happy.  I am lucky that my neurologist and cardiologist always believed mine was autoimmune.  I did test positive on the ANA eventually and was diagnosed with UCTD and that’s why my rheumatologist started Plaquenil.  My neurologist talked him into SCIG and after 10 months of that I am doing things I haven’t in years.  I am in no way cured and still suffer terribly from fatigue but if I schedule things appropriately I can actually do some stuff outside home.  Again my sincere thanks for posting this!

No problem p8d! Do you think i could order a Alpha a-1 antibodies test? Is that feasible / hard to do?

3 hours ago, Pistol said:

Thank you @DizzyPopcorn - SUPER interesting!!!!!

No problem! I wish one day that this condition will be more easily screened for. 

38 minutes ago, KaciCrochets said:

Oh wow, that's got to feel awful. I can't even begin to think of why that would happen. It's crazy, all the issues POTS can cause. I read that more people are diagnosed with POTS than with MS, ALS, and Alzheimer's combined, and that POTS patients' quality of life can be on par with congestive heart failure and COPD, but still most people (and doctors!) have never heard of it. That blows my mind. We suffer so much but there is so little knowledge about how to help us. I hope someday they get us figured out so future generations won't have to go through what we do. 

And people ask me why i hate doctors (not all) ... How can you do your job everyday and not stay up to date. To me, this screams "im just doing this for the money". It is not normal that your patient know more about a condition than you do. 

It's 1:15 am and i can't sleep because im being anxious about my symptoms. Ok ok im also guilty of having a mid day nap earlier ...

What about you guys? Do you have bouts of insomnia as well? 

1 hour ago, ANCY said:

I have lows and highs but have seen a drastic change this year with a switch from florinef to Northera, I'm a bit more stable. I take clonide for a sustained bp of 155/100 per cardiologist. (I bounce around a lot and frequently the hoghs come down on their own after a while.) I also take Midodrine if im running 110/60 or under with already taken my Northera. My bp drops really low, especially with standing, I pass out somewhere around 65/40 and have had readings as low as 42/20s while unconscious. My mid avg though is around 130/80 so can get symptoms with a drop under 100 systolic.  In the begining this was really scary but a couple years down the road now and have learned to mange it better. I do a liter of iv fluids every day which has been the BIGGEST help by far. 

Everyday? You have a port i assume? 

Hello all! I just stumbled on this article about a study that was done by Doc. Grubb. Apparently a new biomarker has been found and it is very easy to screen for it, meaning that many hospitals will be able to have it in the future if it passes further trials. This is incredible news!

https://neurosciencenews.com/pots-fainting-biomarker-14888/?fbclid=IwAR1yzka5ogO-f1H9IB3hpjSEz5B345ab2IdGNO1asI8JLsewzqxxj1gJZJ8

By the look of it, it would classify PoTS as an autoimmune disorder. 

3 hours ago, Derek1987 said:

Not that ive noticed. They just added mestinon to the mix. Ive been on mestinon by itself and did nothing for the adrenaline. So now they are trying the combination of mestinon and coreg. They said the beta blocker isnt doing enough and are adding the mestinon to help my body " put on the brakes".

 

I dont live a normal life anymore. The best place for me to be is in bed and the lights out and in the cold. I had some visitors come over the other day for maybe an hour and a half. I sat up maybe 20 mins and layed on the couch the rest of the time. I was battling fight or flight during the visit but tried to be normal. All the noise of conversation, and trying to focus on conversation myself, it really took a toll. After they left, a tidal wave of fatigue hit me and i couldnt stay awake. Slept for about 3 hours and woke up feeling like crap. Lol.

Next time i complain about my sorry *** (i do that often these days), I'll remember you and how much you're actually going through. 

Are you on disability? 

Edit : Just saw that you're in the process of getting accepted for ssdi. How is that going? 

Bending difficulties was my first symptom.  Its definitely a trigger for me as well. Thats why i usually use my feet to pick things up

7 minutes ago, Derek1987 said:

I suffer through some sort of panic every single day. Sometimes its so bad i have to take my max dose of xanax and ask to be left alone in our bedroom and sleep it off. I just made my wife some soup from a can. When i got it out of the microwave, my hands were shaking so bad, i spilled 20 percent of it on the oven. Face palm. I deal with fight or flight daily so i understand. Its torture.

Thats just frickin crazy. How the h*** do you cope? Do beta blockers do nothing for you? 

Hey everyone. Im a previous member with a name starting with "w".

I had to change my username because one of my coworkers started "spying" on what i was saying on these forums. He probably looked over my shoulder one day while i was replying to someone on my lunch time. I'm not sure what his motive is, but as a safe mesure, i changed my username.

If you have any question, you can PM.

34 minutes ago, KaciCrochets said:

I wouldn't worry. I knew I was in trouble when I started needing a higher dose to get the same effect. It takes normal people months or years for that to happen, but for me it was a couple of weeks. My brain is hypersensitive to everything, I hate it.

I'm sorry to hear it. Maybe pistol can help with your situation? @Pistol

I guess i fit that criteria. Unfortunately i take a low dose clonazepam (0.25 or 0.5) right now as needed. I have some pretty big anxiety and its the only thing helping me while i wait to see my specialist.

I cannot give you reassurance, as i do not know if i have pots or not yet, but i wish you well and hopefully you get a good neuro appointment.

Im curious though, you took lorazepam for only 5 weeks and it left you with problems for 2 whole years? Thats crazy

Oh and i almost forgot... Welcome to the forum!

12 minutes ago, Pistol said:

Good One, @whoami! I have a song too :     Another One bites the dust!!!!!

 

Q -What recipes sound like what we feel like?

A - Scrambled Eggs on a bed of wilted Lettuce

Oh good one! I will try to come up with others