StayAtHomeMom

19 minutes ago, jklass44 said:

@StayAtHomeMom @Derek1987 Yeah I probably should get a sleep study done. I can't really see myself being able to sleep with the CPAP machine though, if that were the case. But hey if some people say it works then...

@WinterSown During the event I unfortunately just have to let it pass - sometimes that entails vomiting from coughing so much, in which case it stops the fits. Other times sleeping with my head up helps me breath better, but that hasn't been a permanent fix. If you have any other suggestions I'd love to hear them!

@Pistol I've wondered if it's food related, but these episodes only occur at night time during sleep and I'm careful about what I eat/drink in the evenings. I also wake up, episode or not, with an extremely dry mouth which makes me think I sleep with my mouth open. Is that something GERD would cause though?

You don't always need a cpap. Sometimes there is a bite block thing you can use. Also there are different types of masks. Honestly if you have sleep apnea bad enough you will want that cpap. Also my sister in law got her adenoids and tonsils taken out and it got rid of her sleep apnea. 

I have seen a lot of people who can't tolerate alcohol anymore. I was never a big drinker, but a few months back I had a crown and coke and it didn't bother me. I expected it to but didn't feel it. I was surprised. 

I wouldn't feel pressured by your co-worker and friends. If need be, hang out with them but get something non-alcoholic. Never did see the appeal of having to drink to hang out and have fun. 

They started me on the short acting. I think it was 5mg. Maybe 10. After a few weeks I noticed it was helping some things but made my breathing issue worse (which is my first and worst symptom that I still have). Then tried a calcium channel blocker. Then the metoprolol. I like the metoprolol much better. Helps my heart palpitations better than the propranolol for me. 

8 minutes ago, MeganMN said:

I want to scream (or cry!).  Day Number Two at work today and was able to drink lots of water. The Propranolol seemed to help with my resting rate in the 60-80 range and my upright rate in the 100-120 range. I am now terrified though because I had several episodes where I almost passed out and my HR was about 37. this just feels crazy. . Feeling super anxious and not wanting to deal! Am not going to take the Propranolol tonight. Ick. Now tons of palpitations. Sorry for the rant. Tough day.....One more to go.

Is it possible your body just needs to adjust to the new medication? Could the regular every couple of hour propranolol be a better option then the extended release? 

I would get a sleep study done. My pulmonologist recommended that everyone get one done at least once in their life. At the very least they can see a correlation between the fits and the state of sleep you are in. 

You can have a nerve conduction study done that would tell if you have nerve damage. 

I have noticed on my days off I feel a little worse. I have nothing that pushes me to move around so I relax from working for the week. 

I feel better in the cold to a certain point. If I get heated though my body will act up. And the summer heat makes my brain stop working. But generally 65 or lower I feel better. At least until this winter. Lately I have been having issues with my core temperature but I hope it is just a phase. Winter is my favorite season. 

1 hour ago, green said:

But up to 25% of the troops deployed to Iraq in 1991 reported Gulf War syndrome. That is not so rare! 

I thnk I'm going to stop taking mestinon and do a genetic test for myself. I can look up this enzyme and maybe figure out how to evaluate a genetic test to find out if I have the less active variant of butyrylcholinesterase.

 

 

I was actually thinking of doing the 23and me or ancestry.com testing. I was reading an article about this guy who was actually progressively getting sicker. He was given the DNA testing as a gift. Turns out he had some genetic marker and the company wrote back to him and said he was high risk for a certain disease. Turns out the doctors tested him and he had it. That story has always stuck with me and I am thinking about doing it. Plus finding out specific percentages of my ethnicity would be kind of cool. Especially since my dad is a genealogy nut. 

Have you talked to your doctor about the medication?

29 minutes ago, green said:

>My only comment is hindsight is 20/20. During that time they used what they thought would work. Same for dysautonomia. They prescribe what they think will work. In 20 years to front line treatment may be different and we will know that we really shouldn't have done something even though it seemed like a good idea at the time. 

Sure, StayAtHomeMom, I agree that it is often only possible to determine that a chemical has certain negative effects for a subgroup of the population long AFTER it has been administered to a large and highly representative sample of the overall population . BUT,.... we now know all this stuff... so why not test patients for the genetic predisposition BEFORE giving them mestinon?

 

Because it cost money to run those tests, and insurance doesn't want to pay it. Especially if it is something that would only happen to a small percentage of people. 

10 hours ago, p8d said:

Betas won’t touch the norepinephrine dumps but will help the tachycardia. 

Does that mean beta blockers will help tachycardia but not the other symptoms that will happen when you are upright for too long (or say doing something stupid like changing out a ceiling light bulb?)? 

My only comment is hindsight is 20/20. During that time they used what they thought would work. Same for dysautonomia. They prescribe what they think will work. In 20 years to front line treatment may be different and we will know that we really shouldn't have done something even though it seemed like a good idea at the time. 

3 hours ago, cherichair19 said:

Morning all. I was tested for autoimmune stuff in the past, but not for awhile. I see my drs next week so def will talks to them about it. Thanks for responses and suggestions. I’ve been tracking temps and seem to be temp spike in afternoons, and I’ve been normal in am. Perhaps exhaustion idk. This is all a lot of info and crazy! 

Make sure you have a thyroid panel done as well. At the minimum TSH, T3, and T4. And make sure the doctor sees your data. The more data you have the better chance of finding out what it could be. 

8 hours ago, AutoDrive2000 said:

Not yet. I’ve noticed benzos do help a little. Not sure what that means?

I am not sure either. I would just take the blessing that something helps. Maybe something else will present itself to help give you answers. 

18 hours ago, MeganMN said:

@StayAtHomeMom and @kafie Thanks for sharing!  I, too, would love to have them look a little deeper at the cause, or if it is Hyper, or what.  The Cardiologist I saw sounds like he is not fully convinced that it IS POTS even though that is what all the other doctors figured.  It is frustrating to work in the medical field and feel like they just throw darts at the dart board to try and figure out what works.  Anyway, thanks for sharing.  The biggest hurdle for me today was that after the Propranolol, not only is my heart rate better, but I no longer feel like I am drowning in anxiety.  Ever since the passing out episode and hospitalization (then my mom died the next day!) I have felt super anxious and on edge.  Tonight, I feel *almost* normal for a bit. 

I get that super anxious feeling. Like my body is having a panic attack without my brain. That is why I wanted to rule out HyperPOTS. That being said I doubt I have HyperPOTS at this point because my midodrine helps. It seems like it doesn't normally help people with hyperPOTS. I could always be wrong though. 

18 hours ago, MeganMN said:

@StayAtHomeMom  Thank you so much for the encouragement and suggestions!  Today was my first real day back since I first passed out at work on November 4th!  I had a couple of partial days, but today was the first big test.  I am scheduled all weekend.  Hope the next two days go better than today, but I am super thankful that I could go in to the Cardiologists office and get a prescription.  I am hoping the Propanolol and Florinef will help enough for me to tough it out.  I had to sit down/lean against the wall a couple times today but once I got the Propanolol on board it was okay.  I am nervous about it- I have to work because I am the only income with 3 little kids!  I would take a look at the Garmin HR tracker.  We do not have a smart phone, but do have a tablet if it needs an app or something.  My biggest struggle is drinking enough water since I am running around the hospital all day.  Anyway, thanks for the support- it helps!

Megan

It works on a computer as well. When you plug it in to charge you hit a few buttons and it downloads your information. I am not sure you can buy the HR anymore but there are newer ones. I like garmin because it is waterproof. Unless fitbit has changed, I don't think any other comparable fitness tracker is waterproof. 

Maybe get a water bottle you could clip to your belt loop? Or maybe rig something to strap to your leg

Glad the meds are helping so much. Be careful this weekend. Don't overdo it too much. 

10 minutes ago, kafie said:

It is a HUGE relief!

I figure I will eventually see the dermatologist after my endless doc visits are over (I have three next month and that's enough for me... Though I might end up cancelling one because it was a test I needed for a medication I might not be continuing). It'd probably be good to get some tips about the rash so maybe I can keep it from flaking (there is no amount of moisturizer that does that - I make my own body butter for my son's skin (because he had "eczema" as a baby (idk, maybe it's psoriasis - he still has a patch on his earlobe but it's mostly gone now)), made from shea butter, jojoba oil, hemp seed oil, and a little extra vitamin e... It only keeps my skin from getting to the cracking/bleeding point - though a little hydrocortisone takes care of the erythemia nicely).

My mom's favorite lotion was a goat's milk "bar" she found at a local craft fair. Homemade. She has the same issues with extra dry skin on her feet and hands. 

I went for a short run. And I mean maybe a block. Afterwards my breathing wasn't right. I felt the need to take a deep breathe and it was like the bottom 1/3 of my lungs wouldn't move.

This went on for 2 weeks, then one day I was fighting with it and my hands and stomach started to curl in on itself and my nose and abdominal muscle started to tingle. Freaked me out pretty bad. Ended up at the ER. While talking to the triage nurse I noticed my voice was high so I made myself calm down and my hands and stomach unfurled. 

ER said it was anxiety, gave me Xanax and check blood, urine, chest xray, and CO2 (the painful blood draw in your wrist). Send me home. 

After that I seen my PCP, a pulmonologist, and allergist, another allergist, ENT, dermatologist, and GI specialist. Plus 2 more ER trips. Over that year my symptoms kept getting worse. 

Finally my PCP told me I need to find a new PCP. Preferably an internist. So I did. That was about the time I discovered POTS on my own and did a poor man's tilt table. So I seen a cardiologist who dismissed it. So I did a poor man's tilt table and seen my pulmonologist and new PCP. 

My new PCP sent me to a new cardiologist. Who actually did a TTT, and confirmed my POTS. My PCP sent me to a endocrinologist who tested my cortisol (even though I wanted a plasma catacholmine test to rule out HyperPOTS)

Fast forward 6 months, I am doing loads better with medication but I am having breakthrough tachycardia, cardiologist wanted to send me to an EP cardiologist. The EP told him no. And suggested I see a neurologist who is 3 hours away who specializes. 

The specialist confirmed my diagnosis by redoing all of my previous tests and some new ones. He was supposed to see my oldest son and test him yesterday (see my post about a waste of a day). 

It has been a long 3 1/2 year journey but I am satisfied with my diagnosis, just wanting the underlying cause now. 

9 minutes ago, MeganMN said:

Thank you all so much for the replies!  This site has been so helpful and informative.  After having 2 days of low to normal heart rate and low blood pressure, I came back to work today for my first 12 hour shift since all this began (6 weeks ago).  My heart rate jumped all over the place and thankfully, I work in the same building as the Cardiologist office, so I stopped in to see them when my heart rate was cranking in the 150's.  I was flushed, sweaty, shaky, dizzy, and anxious.  They brought me in pretty quickly to a room and did a quick EKG, it was Sinus Tach. with a rate of 135.  The nurse called the doctor and he felt that I was having rebound tachycardia from tapering the Metoprolol.  He added 60mg Propranolol ER once a day.  Still feeling frustrated about all of this.  I feel like they should have done more testing to sort out what is actually going on, instead of just relying on a 24-hour cardiac monitor and one Orthostatic set of vitals.  Who knows.  Just glad to have a plan because I am scheduled to work all weekend.  Thanks again to ALL of you!  So grateful for my new far away friends : )

Megan

I use a garmin HR. When I don't feel good I can do a quick check. It also checks every 2 minutes or so and I can check the past 4 hours on the Garmin itself and see a trend, high, and low. Sometimes I have symptoms and it is only showing 115 so I will push it. Until it gets over 120, then I go lay down. It really helps me and it sounds like it may help you if you are working those long of hours in a medical setting. 

It is good to see that you are back to working regular hours though. You must be feeling better then you used to. Hope the propranolol helps. 

I am very excited for you!! I am sure it is a giant relief to finally have some answers. I would definitely see the dermatologist. I see one because of my acne (it is gone now but I do follow-ups still). She has been an amazing doctor over these last few years. She always has something new for me to learn or try. I just went this week and found out the one cream that is basically rentinal a can be put on then a moisturizer on top of it. I thought mixing creams would dilute the power of them. 

My PCP says metoperlol can cause rebound tachycardia. I imagine since your doctor wanted you to taper off it may have way more consequences when coming off it. I hope your BP and HR settle down for you. Have you tried using a fitness tracker that tracks your HR? That helps me a lot. 

5 hours ago, SweDys said:

Tank you all for the kind words and support.  Yesterday was a ruff day, but the support from this community really helped.

In a turn of events my cardiologist rang me today and apologized for yesterdays call, she had now spoken to her colleagues and was now better informed. Im going to start with florinef, doing regular bloodtest to check my calium levels, and I got a new appointment to see her in 4 weeks so we can evaluate the treatment.

Even the darkest night will end and the sun will rise, as the say in Les Misserable.  Now lets hope this can be the turning point I've been looking for.

Good luck. Make sure you read up on the medication and speak to your pharmacist about it. If I remember right people on here have said it doesn't work well if you aren't intaking enough water and salt. You would have to do a search to be sure though. My memory is usually pretty bad. I have never taken it so I don't know much about it. 

Just now, Pistol said:

I am sooo sorry! What a terrible disappointment! I understand that emergencies occur on both sides ( doctors as well as patients ) but this is truly horrific. Just hang in there ( not like you have a choice ) and try again in January. In the meantime try to be well ( both of you ) as best you can. 

Thanks. We will hang on my specialist is good and no matter the answer to whether my son has it, I trust his judgement. My specialist is one of those few good doctors I have found. 

Yea. Originally he was set to see him the end of October. But they called and rescheduled that one about 2 weeks before. 

Out of curiosity, have you been checked for autoimmune? Sometimes that can cause low grade fevers for no apparent reason. Also depending on your age you may be beginning menopause (I am assuming you are female by your name). 

I do know after leaving a job it is hard to relate to your old coworkers. Try to not talk about work when you get together. Maybe that will help with the frustrations. It sounds like your new job is ideal though. I have an uncle who is a nurse and I know it can be very stressful. 

I went today to see my specialist and for my oldest son to see him for the first time. I was hoping for my specialist to rule out or confirm my suspicions that my oldest son has POTS too. 

3 hours to get there. Had to make a pitstop for my job, but we got there just barely on time. We sat in the waiting room for about an hour (the hour wait is typical). I about fell asleep I was so tired. 

Receptionist starts calling people up. Apparently my specialist had to leave for the rest of the day due to an emergency. Soonest we could reschedule was January 21st. 

I wanted to be mad, but honestly I was just worn out and sad. I have to wait another month to have my son checked

On a good note: I made it there and back safely. 

Welcome! This forum has a wealth of information and it is nice to have people that are going through something similar.

I would start by upping your salt and water. That is always a good thing to start with until you can see your specialist. 

I am not sure if your BP would indicate anything. I am not sure what normal reactions are. I would ask your PCP if it is normal or if it means anything.