Jessica_

I used to have night attacks every single night they were awful and debilitating. After I started clonazepam along with propanol I have not had a night attack since! Truly saved me. 

So I have not traveled by plane since my Hyoer-pots started. I am so nervous!! Any tips or tricks anyone could give me? Experiences during flight good/bad? I have my klonopin & propanolol but I’m still concerned how my body will react to the flight. 😕 

Klonopin gave me my life back! I was diagnosed with Hyperadrenergic POTS in 2017 and I was struggling with the day to day. The overload of norepinephrine induced severe anxiety and night time attacks. I was given the klonopin about a year and a half ago and it changed my life! I barely feel any of my pots symptoms and my attacks have been gone since I started it. I don’t care if there is a stigma around taking them or not. When you have a condition like this one, if a drug helps you live your life then take it! So happy to hear it helped you too  

I have been on .5 mg a day and have never needed to up my dose. 

I had SVT and had an ablation in 2017. Best thing I ever did! I haven’t had SVT since. I have read that taking magnesium helps prevent arrhythmia attacks and also potassium. So if your not ready for surgery I would definitely try taking those supplements and see if it helps your arrhythmia and PVCs. It helped me! 

My cardiologist has said that anxiety comes from the nervous system so it is normal for me to feel as anxious as I do since I have a dysfunctional nervous system. I take clonazepam for my anxiety and attacks and it has saved me. I was so against medications and tried almost everything natural to calm my anxiety but I finally caved and it has given me some of my life back. 

My Potassium is always low too and so is my Magnesium. I try to eat Bananas and drink sugar free Gatorade regularly. That seems to keep me feeling stable. Usually when my potassium starts to fall I get more leg cramps and muscle twitches. 

We all have way too much in common and there has to be a reason! I wish someone could figure out this puzzle for all of us. 

I used to have so many pvcs everyday. Some of them would stop me in my tracks they were so strong. Then I read somewhere that Magnesium helps with heart irregularities and now my skipped beats are pretty much gone. Just thought I’d pass this along in case it helps!

You sound just like me! I have SVT (which caused my pots) and I’m hypothyroid too and I also suffer from migraines. The only thing that was abnormal with my labs the day the SVT started my pots was my magnesium was low and so was my potassium. Now I take magnesium supplements everyday and eat bananas regularly.  The magnesium helps with the migraines too.  I had a heart ablation to fix the SVT and I’m so thankful for it. I feel soooo much better now than when this first started 2 1/2 years ago. Hang in there!! You are not alone. 

Thanks guys! @Pistol @bombsh3ll I have been thinking about getting a therapy dog but they are very expensive is what I have found so far. I will definitely look into the alert button, that is a good idea. I HATE being alone and yet I’m forced because of military life. It has been very challenging but so far since taking the clonazepam at night I haven’t had an attack in almost 3 weeks *knock on wood* 

I just have to share my journey in case it will help anyone who suffers from these awful and terrifying attacks. When my pots first started after about 2 months I would start waking up with a racing heart. Every night for about 4-6 months no matter what I did after a few hours of sleeping I would wake up with my heart racing, anywhere from 140-160 and my palms and feet. clammy, dreadful fear and anxiety. At the end of the attacks the shakes would start and I knew it was finally coming to an end. Beta blockers didn’t help, ssri didn’t help. After about 6 months the attacks became less and less. The only thing that changed was starting clonazepam prn during the day.  Now it seems my attacks at night are now brought on by anxiety. I only have them when I’m alone (husband is gone). He is gone for the military and at first my attacks were coming back. I gave in and started taking my clonazepam at bedtime (I had only been using it as needed) and I haven’t had an attack once even though I’m alone! 

I honestly think the clonazepam helps calm my nervous system and prevents the norepinephrine dumping. If you are suffering with these awful attacks this is worth looking into! I remember when this all started and how desperate I was for relief. I must have went to the ER 20x and called 911 countless times thinking I was dying. I’m not saying this is the answer for everyone but even if i help 1 person with this I’m happy. This illness is AWFUL  

That is all

Thanks all! I will try and chill out (anxiety girl here, is it obvious?) and just take it. I need to let myself have the one thing that helps and accept that I need it for now. So glad I have dinet and everyone here who gets it! 

18 hours ago, Pistol said:

I would discuss this with your doctor. IMO any drug that can potentially cause dependence will do so if taken regularly but I think if you continue taking it infrequently you should be OK. I take Ativan at times and only use it if I absolutely have to for this reason. Also - since you have an increase in your anxiety symptoms there might be other meds you can take daily and keep the clonazepam for emergencies. Your doctor will know more about that. 

I’ve talked to him about it and he doesn’t seem worried. I guess I have lost my faith in most doctors so I look for opinions elsewhere as well. He has tried SSRI and SNRI and clonidine and others and nothing has worked except the clonazepam. I think I need to just take it even tho I know the risks.  

6 hours ago, CallieAndToby22 said:

I've taken it for like 15 years. I take 3mg a day. It's the most helpful thing for ME/CFS right now so all ME patients are on it. Incredibly helpful with post exertional malaise, headaches, and sleep. You're taking a really small dose so I wouldn't worry about it. My mom takes klonopin and buspar for anxiety and she's completely healthy she just gets stressed and uses klonopin as needed. 

Thank you for this! I feel like I need to stop over thinking it and let myself have something that actually helps me function. It is a small dose and less than the doctor prescribed. I guess I will chill out Lol I’m glad it is helping you too!! 

I started Clonazepam almost a year ago and it really has saved me in certain overstimulating situations. I have only been taking .25mg as needed which has been 1-2 times a week if that. Now my husband is gone for the military and I am finding myself in a anxiety/pots attack mess. The only drug that has helped with the night attacks and daily anxiety is the clonazepam.  But I keep reading all the warnings about the damage it can do to the brain the longer it’s used and the dependence warnings. I’m so nervous to take this everyday and I’m wondering if I just take .25mg every 1-2 days if I will be at risk for the dependence and negative side effects? 

Any advice appreciated! 

Have you ever had a heart holter monitor to check for SVT or other heart arrhythmias? 

They say to find the fastest your heart should go is to Subtract your age from 220 to get your maximum heart rate.

So if your measuring your heart going 217 that sounds like SVT or something similar to me. I had SVT and my heart would go up to 250. I could be wrong but I would definitely talk to your doctor about it! 

Honestly the only thing has has been able to stop my surges is klonopin and a beta blocker. The klonopin calms my body down and reduces the fear and the beta blocker keeps my heart in check. It has been a life saver! 

6 hours ago, Hutch said:

Do you still have pots? 

Unfortunately yes. However, my pots symptoms did improve after the ablation and it took about a year for most of my symptoms to subside. My pots is manageable now and I’m pretty high functioning compared to when all this started. 

I had a heart ablation 2 years ago (which is a EP study) and it wasn’t bad. My pots was induced by SVT so my situation was a little different. If you have a true arrhythmia your heart will usually be going 200+ beats per minute and it won’t matter if you are standing, sitting, or laying down. It won’t stop until the heart gets back on the SA node. 

I would definitely do you research and make sure you feel good about moving forward. But don’t be scared of the EP study. I was terrified and was sure I was going to die and then it wasn’t a big deal, some doctors even keep their patients awake for it. The hardest part was the soreness in my legs (where they insert catheter) and not being able to life anything for 3 weeks. 

Good luck let us know what you do! 

3 hours ago, Outaker said:

Maybe.. are you hyperadrenergic or regular?

Hyper with “idiopathic Dysautonomia”. They have never been able to find my underlying condition. I currently have 5 root canals. Just makes me wonder....

Anybody else watched root cause on Netflix? How many of you have had root canals? If you have you must watch it! 

I know it won’t be the answer for everyone but I’m seriously thinking this might be part of my problem.. 

On 1/14/2019 at 5:56 PM, potsiebarbie said:

Did you see your neuro yet?

Unfortunately no, I had my appt written down wrong and I don’t seem him til Feb 19. Counting down the days! 

6 hours ago, potsiebarbie said:

Yes! Please lmk. None of my doctors take any of it seriously, because I have a history of anxiety. I feel like my pots either started, or at least made itself known after this last c section too. This was my third and last. My first two were emergencies. This one was scheduled. Yet, this one brought the most problems. The surgery took 2-3x as long because I kept "oozing" blood (that's how my ob phrased it). It was so traumatizing for me. I had to be given a clotting med during the operation. I also had my fallopian tubes removed. I do feel like the anesthesiologist had to stick me twice. And for some weird reason he wanted to do an epidural instead of spinal, but I insisted on spinal given my past experiences. IDK. Sorry for babbling, but I can't help but think it's related. 

You aren’t babbling and even if you were I wouldnt care because it’s nice to talk to people who actually understand what I’m going thru! I’m sure it’s from the epidural.. I just wonder what it did and if it’s harmful. I will for sure let you know what my neuro says (if anything) Lol 

6 hours ago, potsiebarbie said:

I've always had anxiety (since I was a child). And eventually I started suffering from really bad panic attacks. So when I took them I felt normal. I've gone thru periods of taking them slot as needed, to periods of my psych having me take them on a schedule as preventative to not needing them at all. The worked great before pots, but oddly enough, not so effective with pots. Which totally sucks. So Idk. I've never had like an addiction issue with it, but I do know we build up tolerances which is why it was helpful to sometimes not need them at all, then when I go back I can start with a low dose. IDK if any of that makes sense. Lol Pots brain. 😵

It totally made sense and I completely understand the pots brain! I try and convince my husband that brain fog is a real thing because he gets so frustrated with my memory lol! I’m definitely going to try the Xanax assuming my neuro will give them to me. I’m happy to hear you have been okay off of them even if you were taking them regularly that eases my anxiety (ha) about them! 

1 hour ago, WinterSown said:

I completely sympathize. I got separated from my husband while we were at the Cleveland Zoo and I had a panic attack -- I was so upset I didn't think to call him. He came back for me, he found me. This incident became part of my medical history and helped lead to my dysautonomia diagnosis. Last time we went on vacation we traveled in blue jeans with matching jackets and caps--we looked like twins which was the point. If we get separated we can easily describe what the other is wearing--the same exact outfit. We learned this from an elderly couple--the wife is not doing well and the matching outfits lower some of the stress in an accidental separation by the crowd or simply being unaware and wandering away from each other. 

There are some articles that might help, there are many people who feel the same as you with similar concerns.
Coping with Anxiety at Disneyland

Disneyland Services for guests with disabilities.

How to cope with a panic attack at Walt Disneyworld.

I do hope there's some information that can help with your trip--I also keep a vial of low-dose 2mg valium in my purse--I get vertigo from sensory overload. I bite the pill in half and take 1mg to start, and usually with a coffee or diet cola. I do fine, it takes the edge off of the environment. Mom's make a lot of sacrifices for their children--when you get to the gift store get yourself something extra meaningful because you earned it! 

Hugs.

I forgot to ask you about your vertigo. I have had vertigo briefly for the past 10 years or so. Except it was positional and would only occur when I would turn over from my left to my ride side and then objects would move or the room would spin. Now I am getting these episodes (I’m pretty sure it’s vertigo) where out of nowhere the world will start spinning and I feel like I’m going to pass out. It only lasts a few minutes and then goes away. I haven’t passed out from it and I checked my BP one of the times and it was high 140/99. Does that sound similar to your verigo? What are your spells like? What do you do for them?

More hugs lol 

13 hours ago, potsiebarbie said:

Mine was after my last delivery too! 

OMG maybe we are finally on to something with this! I’m going to ask my neuro when I see him next week about it. I will let you know what he thinks, not that I’m always taken seriously so I won’t get my hopes up 🙄