Lovebug

I have hyperPOTS and have had 2 surgeries, as well as conscious sedation a few times. The first surgery was when I was symptomatic but pre-diagnosis and I don't remember anything bad. The 2nd surgery (hysterectomy) was in 2015 and I was SO nervous the morning of surgery my BP was well above Hypertensive Crisis levels. I told them lay me flat but it didn't help much. Long story short, I had surgery and have never felt better! In fact, the further away from surgery I got, the worse I started feeling. The theory I had with my doctor was that anesthesia was very calming to my nervous system. Regarding the propofol, again, I always wake up feeling great. Almost like the sedative/anesthesia helps me get the deep restful sleep I normally miss from having Dys.

YES!!! I had surgery almost 2 years ago and I wish I could go back! In the past I had surgery (prior to Dys diagnosis) & it wasn't a bad experience but it wasn't great either. So this last surgery (hysterectomy) was so scary for me. I didn't know how my body would react. Well, I woke up in the PACU and saw my anesthesiologist, waved him over, was ready to jump out the bed. I was talking, I was happy. I slept some because they gave me a dose of pain med before going to my room but once I was in the room and awake from surgery: I was GREAT! I never felt so great. Even though the pain from the CO2 hurt, I was so energetic and at ease. So much so that I'm ready to have surgery again! LOL! Then, the further away from surgery I got, the worse I felt. I have had an EGD once since then and received Propofol (Michael Jackson drug) & well, again, I felt really good afterwards. I chalk it up to the anesthesia really calming the nervous system. I hope your daughter gets better! That must be hard to have her mobility affected. Prayers sent.

Yes! One of my main problems is my GI pain. LUQ pain ALL THE TIME! I have episodes like you describe where I get abdominal pain, then chest pain, possibly heart racing, anxiety, can't make a decision, need to have a BM. Sometimes I get nauseous & gag. This always occurs at night & I usually have progressively softer & softer stools each time I go. Many nights I sleep on the bathroom floor. I'm getting checked now just to make sure nothing is going on but I've been checked in the past with nothing found. I do recommend that you get checked to make sure there isn't an underlying cause. I take Celexa for my pain and recently changed my pharmacy which could be why I'm feeling it more. Katie mentioned mast cells... now that I think about it, I wonder if I'm having some sort of reaction to the foods I eat because these episodes always happen at night. I hope you feel better!

Hi Lissa, I, too, am a nurse and found it to be so frustrating that I couldn't find a doctor to help me. There were many docs I went to where I said "check please..." right after they walked in the room. I found it to be a mourning process after my diagnosis. I was always very active and this disease has made it difficult. Just know that you should never give up. I fluctuated in my health status through the years....2 years ago I started exercising strenuously (slowly worked up to it) and I lost 20 pounds. I also ate healthier than now. Most of my GI pain subsided and I felt really good and more stable than I had since being diagnosed. However, my job got more demanding and it completely knocked me off the rails. Thus, now, I've gained my weight back and am having more problems. My goal is to SLOWLY start moving again so that I feel better & can function better. As an example: I had 3 tubes of blood drawn last week and it knocked me out completely! My BP Monday night got as high as 200/130!!! I didn't have energy and by the end of the day could barely formulate a sentence. I know we are all sensitive to volume shifts but I truly did not think just 3 measly vials of blood would do that to me...WOW! Anyway, hope you feel better! Don't give up!

Do you have a pulse oximeter where you could measure your oxygen levels? When I get SOB from my Dysautonomia, I check it and it calms me to know I'm oxygenating properly. They are cheap if you wanted to buy one. My doc doesn't like me going to the ER cause he says they will "mess you up" with drugs. He also said SOB can definitely be the Dysautonomia. The problem lies in knowing when to go and when not to. Make a plan with your physician. Mine has an on-call service that I can pay for to use at any hour. I can contact him via facetime or phone and he can direct me as what to do. I've never used him like that but it'd be great for when I'm not certain if I should head out to the ER. And like the others said... when in doubt: GO! Hope you feel better!

Oh wow... both of ya'll sound like me some 5-7 years ago. It took me a few years to get diagnosed (probably longer). But once I found :"The One"... the doctor who believed me, knew it wasn't in my head, knew it wouldn't kill me, & knew the misery I was in...THEN I was able to finally move on to acceptance. And what I realized (which you summed up so well in the OP) was that my life as I once knew it was gone. I would never be the same again & I would never have it back. Therefore, I grieved my old life. I was extremely active being a runner and gym-rat. So it was hard at first. Then I realized that regardless of how dead tired I was, I forced myself to live. Ironically, it was a Nikki Minaj song that inspired me. It's called Moment 4 LIfe & Drake raps a part that says "Cause everybody dies but not everybody lives". It was at that moment I realized I wasn't "living". I had already died a thousand deaths in my mind with all the pain & fatigue & misery. I felt that I had no where to go but up and I wanted to live as best I could. I was very thankful that I could function as well as I could compared to some others on here. I also stopped coming here as I worked on improving myself b/c I felt I was doing so much better. I check in every so often... just to see. I refer many to this site who haven't been diagnosed yet. And most importantly, I wake up, sometimes suffering, & push-through the day because I know I'll feel better (NOT normal) if I do rather than staying in the bed. Sometimes I feel I should receive extra pay for going to work like this while others have all good days with only few bad days. But that won't happen, LOL! My best advice: find what motivates you and use it. Get out and exercise (SLOWLY) if you can cause you will feel better from it. And know that you are not alone.

My symptoms are all GI with vital sign changes and anxiety. I get em all: progressively soft stools, LUQ abd pain, chest pain (burning) nausea, gagging (usually do not vomit), anxiety, elevated BP (highest was 188/137 per wrist cuff), and an inability to verbalize what I'm feeling. All I can tell my husband is that I feel bad. I call these episodes: storms because that is how it feels inside. Also, I have a rescue plan of meds: Inderal 5mg, LIbrax, & Pepcid complete. I usually sleep on the bathroom floor next to the toilet.

Hi RichGotsPots, When I exercise hard and push myself, I'll come home, take a bath, eat, and then get that fever feeling like my skin is on fire, I'll have no fever and when I feel my skin it is normal temperature to the touch. So I associate that feeling with pushing myself too much. I have had it at other times but just think it's hormonal. I can also feel weak at any odd time so I don't know why some days I have more energy while others I'm more weak. I like to think it is associated with my poor diet.... need to work on that. I hope you feel better and find some answers.

Thank you ANCY! Luckily I view anesthesia as a "wonderful" thing although I wake with my lungs feeling funny but that went away quickly last time. I don't get the post op nausea or anything but I've already got script for low dose Phenergan at 12.5mg which I break in half and have used twice this week already so I know it doesn't knock me out (just makes me groggy). My truly biggest fear is the hormones. Thought some on here would have experience with that. I've tried birth control pills 3 times a few years ago with bad abdominal pain so I couldn't tolerate. I tried progesterone once and only took one pill cause it knocked me completely out. Then tried the cream to control the dose & it basically did nothing. So I haven't had much success but she ordered me a estradiol patch & estrogen vaginal pill. Thank you for the well wishes and if anyone has any experience with hormones or have been through this, please share...

Be appreciated. I had surgery about 5 or 6 years ago and did OK with anesthesia. However, things are slightly different now AND I'm getting my ovaries out so will be going into surgical menopause. I will be taking estrogen. I'm so scared about what will happen on these hormones given that my cycle has become such a horrible time for my dysautonomia. When I'm having my "dot" I sleep on the floor near the toilet at least 3 times during the week. It very well could be from the fluctuation in hormones or the lack of/increase in estrogen/progesterone. I'm praying my symptoms are worse as a result of decrease estrogen so that I'll feel better, not worse, after surgery & taking estrogen. Does anyone else have any experience with this particular situation? My doctor knows about my dys and plans to give me extra hydration. Any words of advice?

I went to my doc on Tuesday (in tears) and unable to drink my normal fluid loading due to the nausea associated with the pain. He gave me the following regimen: Tramadol (25mg-->low dose), Tylenol (500mg), & ibuprofen (200mg). Of course he told me to fluid load. So I'm alternating all 3 drugs and here's the results: Tylenol is starting to make me nauseated (go figure), ibuprofen helps the pain temporarily, Tramadol helps but not as much as the ibuprofen. The next day my HA was better and I called my doc to let him know and he prescribed a cycle of Prednisone, which I think is helping since I've taken a days worth by now. So now my symptoms are waxing & waning but I definitely have them when I change positions. But here's my question: is this just another symptom I'll have to live with on a daily basis? If so I think I'll scream!!!! I already have daily abdominal pain and have adjusted quite well to my quirky body....working, keeping my hyperBP down, and even getting back into some strenuous workout (like I used to do). Now it seems like I've been bedbound for an entire week and my poor hubby is waiting on me hand & foot. Do migraines last this long!? PLEASE, someone tell me this will get better if you have experienced this before....

I will definitely try alternating my Tylenol with Ibuprofen. I was afraid of taking too much Ibuprofen b/c I have such a bad tummy but I think rotating it will be OK. Thanks a bunch, your advice is much appreciated!!!

So I'm guessing that this is the Fibro part of my Dys but I have had a headache for 6 days and I don't normally get headaches. A low grade fever the first 2 nights with body aches, and subsequent neck pain/stiffness. The headache has ranged from my eyes to the top of my head to the back of my neck...down into my shoulders and back. I used Ibuprofen the first 2 nights which helped with all over body aches and temp but not much with headache. I took Phenergan the 3rd night just to get sleep but still woke up with headache. Then started with Tylenol 500mg which seems to have eased the pain but never completely rid it. For those thinking meningitis...I really do not think it could be that since my temp was really low grade and my neck stiffness hit or miss. Plus, my Dys always gives me tons of pain and is worse during menstruation...which happened to start the day I got all this pain. Also, I should mention that I worked out really hard that day (RPM at the gym). I've just got to get some relief from this pain...what have all of you done? Any suggestions are greatly appreciated. P.S. If I wake up with this, I'm giving my cardio a call (he treats my Dys)...

Excellent job! Congrats and good luck in whatever path you choose!

My Dyautonomia symptoms began after I took a week of Vytorin and just progressively got worse. I probably had symptoms before but they were somewhat mild and I didn't realize what was happening. As a nurse, I have received years of vaccinations but got to a point where I just felt they weren't necessary and quit taking them. Now, hospitals are starting to mandate that we all get them. Guess I'll be wearing a mask around since I'll have a medical excuse NOT to receive any vaccinations...that is what the hospitals want to make us do if we can't get the vaccine.

That mast cell problem sounds like serious business. I have standing orders at my local lab in case I have an episode so blood can be drawn within a few hours. However, it never happens that I have an episode close to the mornig (usually middle of the night). But I was suspecting some type of mast cell disorder in my abdomen since I have such severe abdominal issues. I suppose I could just start taking Zantac in case I have it....if I improve: good! I have lots of chest pain anyway and a strong history of GERD so Zantac may be good for me anyway. As a matter of fact, I'm on the cusp of getting an EGD but I dread it....fear!

Issie, That sounds horrible! I bet you were so scared. I hope you have everything under control now. What do you take to stave off the attacks...what antihistamine?

You sound like me - Lovebug - tried to look up the link that is on your personal page and it isn't working. Maybe, you could list a different address for us - so we can look up this book. What is the name of it? Saline and nitroglycerin brought my bp down during an ER visit. Who would have throught that one? Well I suppose I'll have to visit my own page and fix a few things, LOL!!! Anyway, here is a link to the book: http://www.amazon.com/Mitral-Prolapse-Syndrome-Dysautonomia-Survival/dp/1572243031 Nitro is a vasodialator so not only would it lower your BP, I would have been scared that it would bottom you out. My cardiologist advices that I avoid the ER...says they will "mess you up" since they do not really understand the sensitivity that I have to meds or Dysautonomia at all.

I am hyperPOTS with high BP. When I was first diagnosed I didn't know what was going on b/c I woke up one morning, rolled over in bed, and my heart started racing with a BP 180/120 (lying down). I went to ER in a dehydrated state, they gave me IV fluid (which as a nurse did not make sense b/c that would normally make someones BP go up). However, mine gradually came down. It was all so weird and I started to realize something was wrong with my nervous system. What helps me is in my list below. I recommend reading the book on my personal page as that is the book my doctor gave me when he diagnosed me. Good luck!

Thanks Kim! Actually, this laser is a Grade IV and is more like $30,000...at least the commercial ones are. Anyway, the website does show mostly animals but they do use them on people too. I think I'll try to look for reviews online too. Thanks again!

Yes...Please! I'd love to know more about it. I really want to try it but I'm sorta scared, LOL!

Well I woke up choking this morning...first time this has happened. And it wasn't a little choke. I had to sit up and violently try to clear my throat. Either it was saliva, stomach acid (I have GERD), or a piece of fuzz/bug that I swallowed while sleeping. I can't help but wonder if it was just saliva. I think anything our autonomic nervous controls is affected and yep....swallowing can be one of them!

I know we all have different symptoms but I have tons of pain...sometimes it gets unbearable. I don't take meds for it with the exception of Celexa which was prescribed for my visceral pain. Anyway, the K-Laser is supposedly the best thing since sliced bread. My little 5# Yorkie is getting treatments now for an unknown condition that has caused hind end lameness. She had her first treatment today and can walk better. I can't wait to see what happens after all 6 treatments. Anyway, my vet said he had success with a pancreatitis case (very painful) and the difference was like night & day. Anyway, this is used on humans too. If anyone has experience with this, I'd love to hear about it. I tried to do a search here but only got laser removal of hair/varicose veins and such, which is NOT what this laser does. Anyway, here is the website: http://www.k-laserusa.com/

I have hyperPOTS...wonder how the binder and salt loading would help. I don't need to worry about supine HTN since I drop upon lying down. Ironically, salt helps me feel so much better. I want to start taking salt tablets and possibly potassium but am unsure of doses. Can anyone offer advice on that...?

It's a great idea to try them seperately. I actually drank a packet on Thursday with no reaction. Then Friday morning I started drinking another packet (I didn't get near to finishing it) and took 1 Cardio Essentials. Therefore, I gotta believe the combo was no good. However, I've taken one dose of a similar packet about a year ago and had the same reaction. My biggest problem with meds is if I had a reaction once, I never want to take it again. I'm a bad patient when it comes to meds, I definitely have a phobia, and any side effects I have seem to be intolerable to me. Thanks all for the feedback! It is good to know that it isn't just me...