Kellysavedbygrace

Thanks for posting two good stories!

ChristyD, I almost always do better when traveling,

( except now- I'm in Idaho visiting my hubby's fam and we are at high altitude so I think that is why. Needed extra saline just to bail me out.) But my hubby and I have joked about how I almost always do better when Traveling. I have wondered if adrenaline plays a big role in that for me.

Don't NE serum levels (like other neurotransmitters) fluctuate quite a bit for those of us w Dysautonomia? Mine was also elevated upon upright tilt but I was under the impression they vary quite a bit day to day so one day I could be at 800, another 600, another 1000. Anyone know if this varies?

I use IV saline therapy as a "bailout" when I get really symptomatic or as a preventative measure before a stressful event ( flying, travel, etc). It really helps me and I am so thankful for it as a last resort. I have had times when it didn't initially seem to help (needed more doses) and other times when it has been miraculous (as described by allaboutpeace). When I'm in really bad shape one dose of IV is not enough but if I have it every other day 3 times it will help. (my script is for 2ltrs up to 3x per week PRN) The most it has lasted (feeling miraculous improvement) is 2.5 days but it always improves my condition.

I'm traveling in Idaho now. I live in FL. I had 2 ltrs before getting on the plane. (had between 8-10am, flew from 6pm - 2am). I had virtually no symptoms on plane which is nothing short of a miracle for me. After 2 days at high altitude 5500 ft, I was nearly comatose. Had lined up fluids at the local small hospital in advance so when I went in on Monday they were ready for me. After ultras I was feeling better again and able to play w my family and kids a bit. Now I'm back in bed, on and off but able to gt up periodically. May go back for more. Will get another couple of liters for sure before getting on the plane to go home. Hope this detail helps.

I discussed this w Dr. jaeger at Cleveland Clinic- he does not like this as an ongoing therapy because of risk of infection but approves of it as an occasional measure. Vandy has a research study going on right now about IV saline usage for POTS and I'm thinking of going up to participate.

This is a pretty big issue for me. This afternoon I attended a 50th anniversary party for my husbands parents. I rested all day to attend. There were only about 25 people but after 1.5 hours I could no longer sit up. I went into the next room to lie down. My husband practically carried me to the car as I was so weak- feels like a Mac truck hit me. I'm struggling today with breathing and fatigue already but the sounds, motion and activity literally made me sick.

I don't understand why these sensory things make me so ill.

Supine 65

Sitting. 95

Standing. 120

I've been on and off them. Like looking4 My HR jumps in the 90s- low 100s when sitting and then 110s - 130s when standing. I have had a handful of high tachs (ie: 150's -190s). But they always settle down when I get supine.

I took myself off of the BB after losing more than half my head of hair. Since getting off BB I would sy that my overall fatigue is improved. I do recumbent excerise and salt/fluid load. When really symptomatic I get IV fluids.

I'm thrilled to hear about the laser treatments. I will definitely look into them.

I've always needed more anesthetic than one dose. But in the last year have had dental work twice and both the problems were latent onset of severe Dysautonomia symptoms. I'm still recovering from a filling done almost a month ago. I actually suspect either some damage to the trigeminal nerve or some sort of systemic toxicity that has a latent effect.

Thx for posting.

As a side note I tend to see a better correlation to symptoms when my Mean Arterial Pressure (MAP) is low. Anything below 75 and I am symptomatic and probably in bed. My average MAP is 79. My high is 109 and my low is 44.

Did I mention this is a cool app?

I've been paying more attention to this since Feb when I had a low pulse pressure of 13. I've been tracking mine on and off since last Nov. Using my Heartwise App on my iPhone- in stats it shows me my avg PP is 32. My high is 56 and my low is 13. Am symptomatic with both high and low PPs.

What you are describing is what I would call my "POTS attack.". Usually starts w me noticing palpitations and I'm always short of breath. My HR usually jumps high 150-200 erratically and then will shortly resolve in the lower 110-130s before returning to baseline in the 70s. Like you described I get very weak, shaky, and I feel like I'm going to die. I just have to tell myself I'm not going to die.

It helps if I've had lots of fluid /salt and have had Good rest w little stress. Oh and eating well is a big element too.

I'm not sure why but have been told by my autonomic specialist that the low dose of Clonazepam will help to gradually relax the nervous system and because it is one of the few long acting benzos it will help control the variations in heart rate throughout the whole next day. He has prescribed just one dose .5 once a day right before bed. He says it's too low to get addicted to but will really help w relaxing the system.

This is a really interesting discussion. Thanks FAmy for starting it.

Don't know the cause but was triggered initially by a root canal with sudden onset last Sept. Had more dental work about 3 weeks ago, a filling this time- same side, different local anesthetic, and I had a complete relapse of symptoms. I have neuropathy, severe blood pooling w/ decreased cardiac output and high Othostatic NE. I suspect MCAS, NET and/or some hormonal mechanism. Hope this year to see specialists in MCAS, Endocrinology and research program at Vandy- hoping I'll know more then.

I agree with all of you that knowing the cause/ trigger/mechanism is critical in building the right treatment plan.

CJ, Hoping it went well & glad you knew about the insurance. Yes, I'd love to know how it went too.

4 times since onset last Sept.

By the way, yes! This happens to me every time. At home my average is 95/65- in dr office. 120/80. The home data really helps.

If you are an iPhone user, there is a great app called "heart wise." you can email a pretty chart showing graphs and full details.

I am excited for you.

Randy is my doctor, my friend and has been a Godsend in my life. I can't imagine going through this without his help and encouragement.

I'll never forget my first visit with him. In the waiting room I met three people who all had POTS (including the receptionist.) I didn't expect to get emotional but I had not yet met anyone with POTS (except online) so I was overwhelmed. Randy came out, he was running a bit behind and told my husband that we had time to go get a bite to eat- so we did. When we came back, I had the most rewarding doctors appointment I've ever had.

Randy took his time. He told me his story about his onset of Dysautonomia. He asked me questions about my case. He read (or looked at) every page of my medical chart- which is in a 2 inch binder. The he helped me understand the basic etiology of Dysautonomia and then discussed possible treatment options that I did not know about- some of which I have tried and am using, some I have not yet. He is an excellent resource in helping you develop a treatment plan. He has a deep southern drawl and is humble, kind and honest.

I have no doubt you will be delighted by your visit with him. He will encourage you in a way no one else can because he has seen so many cases and understand what is like to walk in our shoes. Here are a couple of tips before your trip:

- double check the insurance coverage. (last time I was there he only accepted a few types and we have had to pay out of pocket- which has been well worth it. He does provide all you need to submit the visit to your insurance for reimbursement but it is helpful to know this in advance- you may already be aware of that.)

- plan to take your time with this first visit. Not sure how long your visit will last but make sure you have plenty of time.

- bring copies of all your medical record with you. Even if you've submitted in advance. It is handy for him to be able to look at all the info in one place.

- Ask your husband to take notes for you if he is up for that. He'll cover so much ground you'll appreciate any notes afterwards and if you are like me you'll become too tired to absorb it all while there.

- Having your husband go with you is so important- I almost had my mom drive me because it was hard for my hubby to get off of work. We are so thankful he did. It was helpful for him to hear all the info which has translated into him really understanding what is going on with me when I can't function like I used to.

- There is a great cajun restaurant about, "Jerry's" two miles south of his office on the right side of the street-each time my hubby and I go it is a highlight.

Becca, good for you for going! Just going on the trip will be a big win because your love for life is beating the illness. I'm planning a trip next week with my family and dread flying but I'm going for the love of spending time with them. Its a big family reunion so I'll be facing some of the same challenges:

In preparation I'm planning to get packing done 2 days ahead- so I can rest and salt/ fluid load

I've planned to get 2 ltrs of saline the morning of the flight. (this helps me may not apply for you.)

Im making arrangements for IV therapy there if I need it. And I'm making arrangements for massage.

I've planned a room where I can get away from all the action when I need to.

When I know someone really cares and they ask I typically tell them what kinda day I'm having and try to find some blessing in this.

When I don't know someone really cares, but they might, I say, "do you really want to know the truth?". (gives them the option to permit me to say more /or not). They always say yes and I find it connects us a bit.

When someone really doesn't care I just say "I'm hanging in there."

When people don't know about my condition I'll say, "I have Dysautonomia, a rare disorder of the autonomic nervous system- the part of the system that controls all our involuntary functions like BP, HR, Digestion, etc. So my condition affects all of my organ systems. It's kinda like having a really bad case of the flu that keeps you in bed all the time without the runny nose, sore throat, etc.".

I have intense ear issues but not quite like you described.

Here's a quick summary so you can compare:

- constant ringing in the ears (both sides- very high pitch) since onset last September.

- my symptoms correspond with the intensity of ear ringing. (the worse I feel, the louder the ringing island the more pitches I will hear. I've detected 3 different pitches at times)

- my ears often ache (with and without migraine)

- I periodically have ear drum spams that are miserable

I have not noticed more ear ringing on orthostasis but definitely is more pronounced when I am stressed.

Hope that helps.

I have not noticed a decrease in HR- in fact, the opposite.

Last week while I was having IV therapy I had two weird episodes where my HR spiked - both at the end of getting 2 ltrs. The first time scared me w a HR of 195, then hovered at 187 for a while. When they unplugged me it came down quickly. Then last Fri similar thing happened at the end of the second liter but I only spiked to 130. Both times reclining. Any one have that experience?

Pere, your descriptions of diagnosis, symbols and helps/hurts is so similar to mine. I'd be surprised if you found the SPAnx not to work as well as compression stockings. Would love to know your final assessment.

I wish I could. At this time I am unable to stand still for more than a few seconds w/o becoming symptomatic and that is on a good day. On my first TTT I made it 3 mins, the second 9 mins, before blacking out. before losing vision I can almost feel the. nE surge and my legs become weak, I lose ability to concentrate, etc- you know... I guess I could take it really slow and start w one min. Hmmm haven't considered ... I thought most everyone here was like me but I must be either wrong or misunderstanding tilt training.

Thanks for sharing! Interesting.

Following a big jump in HR I will experience severe fatigue and pain all over- like a Mac truck has hit me. It is not isolated to one area but it is a pain that aches deep in the joints and bones.