Hello, I Am New Here. My Name Is Nova.

[Nova]

hello to all of you. i am so grateful that there is a site like this, for people with a syndrome that is rare, and very rarely picked up on for so very long ... that support exists here, that questions can be answered here, that experiences can be shared here. and yet, at the same time, i wish that this forum truly did not *have* to exist. that i wish so many people diagnosed with dysautonomia did not have to deal with being given no support at all, did not have so many doctors who only tell them they have no answers for them (IF they even take you seriously at all), did not end up losing so many loved ones and friends who will leave them over it, and did not have to find a computer forum to find anyone with similar symptoms/experiences to keep us from how devouringly lonely it can all be, it all breaks my heart.

i have the sub-type called 'hyper-adrenergic dysautonomia'. as far as symptoms, they can/do change from day to day but my heart rate and BP seem to be the biggest and most constant concern right now, as my 'resting on the couch doing nothing' baseline is around 120bpm. all i have to do is go from my driveway to the house with one bag of groceries and i will easily go up to 170- 180bpm range. and i have definitely gone higher when i really *try to exert myself*, like if i try to run across the back yard to try and play 'tag' with my little neice. my blood pressure is also pretty much constantly high... the top number (systolic) is baseline in the 150's, with my bottom number (diastolic) in the 90s, but with mild exertion can jump to 190's/130's or higher. there are many more symptoms, GI, adrenal problems, extreme headaches, and i have fainted in public 5 times in the past 8-9 months or so. i am sure others will come out as i get to know you all here.

i am 44 years old. i worked as an RN for 17 years before i got so sick... and i miss it so much, it was *not* just a job to me. i ended up spending about 8 1/2 months out of 12 one year admitted to the hospital about 7 years ago in serious condition, i ended up divorced because my ex-husband could not handle how sick i got. and i had to move back in with my parents, since disability does not pay enough for me to *know* that i could make it financially, even if i *really* cut corners...moving right back into the house that was so traumatic growing up, with the same parents who just cant stop seeing and treating me as if i were a '12 year old problem child'.

i am frustrated, hurt, scared, and sometimes angry... i feel betrayed by 'family' and 'friends'... i feel that i am very alone with this. maybe not so much anymore with this forum (?).

i do not wish to be all doom and gloom in my introducing myself, so i will share some of my interests... i LOVE music. there have been times when i said (though it may be cliche) that i am not sure i would have pulled through all of this time without music. my tastes do vary, from classical music, to jazz, to outright old rock (Beatles, Pink Floyd, etc...), to Gospel, to punk music, to indie bands like 'Radiohead', to classic 80's (like Duran Duran), etc... i also love books. i love to read. sometimes i read non fiction, but i tend to see the different worlds in so very many books, almost as a temporary escape or distraction. i dont really watch TV, but on 'Netflix' i have watched 'Battlestar Galactica' (newer), 'Parks and Recreation', 'Arrested Development'... and i love British shows like 'Are you Being Served'.

hhhmmm not sure if i should have mentioned anything else, if so, please just ask. i look forward to being just as much of a support to others on here, as they may be to me... i never liked 'one sided' relationships. looking forward to meeting you all,

Nova

[SarahA33]

Hi, Nova! Welcome to DINET Rest assured that you've found others who understand your daily struggles and challenges, it's really difficult for a majority of our family and friends, especially those who don't have first hand experiences with chronic illness, to understand how hard minimal tasks can be. Also, as a nurse it must be really hard for you when people lack empathy. Before I joined DINET I felt as though I was on an island by myself.. the forum brought so much encouragement and support when I needed it, and just being able to read through other's stories that were virtually almost identical to mine for the first time was life changing.

We have in common the hyper state. I also have migraines/headaches. How do you control them, if you don't mind sharing? I get them at least 24 days a month, and botox injections have been the most helpful for me. The tachycardia is such a terrible feeling! There's nothing worse than feeling like you ran a marathon when your only waiting in line at the bank! Again, welcome - Sarah

[Nova]

Hello Sarah! thank you so much for the warm welcome. it is amazing but something as seemingly small as that actually made me tear up... in a good way... i thank you again. and yes, it seems to be getting worse each year, and it is scary when it feels like either no one believes you, or if they do, that they take the attitude that you just need to 'get back on the horse' and "function". if i *never* heard the word "function" again aimed at me like a weapon ever again in my life it would be too soon!. haha. i truly understand that they don't "understand" what this illness is like. though they *can see* the consequences, and the symptoms that often keep me half bedridden... as a nurse for 17 years, i most certainly never had some of the devastating illnesses that some of my patients had, and yet, i did not have to literally go through it to understand that the bottom line is "this person feels very very ill and alone, and scared, in pain, and vulnerable... and i need to do whatever it is that they need me to do to help them feel the as well, and as safe as they can, and without compromising their dignity". and maybe that is just it, maybe i just cant understand such a void of compassion, because i *am* a nurse, trained to help, and try to use compassion well... and so again, i am feeling so so grateful that i found this site. that there are people who want to support each other, and it makes it just that much less lonely.

as far as the headaches, i get different kinds:
1) this all started with a massive whiplash injury to my neck... and there is a good bit of degeneration in my 'facet joints', basically meaning that 3 of the vertebrae are kind of crushed down into each other. it is from C4-C6, and i call it "the bone pain" because it does simply feel like my bones are touching too much, and if i can not get that pain to stop soon enough, it will eventually work it's way all the way down my neck to the shoulder blade area, and upwards to my head causing a massive headache. that type feels like my *whole* head hurts. no pulsing feeling. and it is kinda sharp. really *avoiding them* by watching how i move my neck is the most important thing, they often just require pain medication.

2) the frontal ones. these seem most like a 'migraine' i think. i will take excedrin, but i make sure to lay down, as the caffiene in them can make my heart race. these are more of a 'dull' kind of pain and they *do* pulse/throb, as well as having that feeling that it is behind one eye... i also use some different breathing techniques to stay calm... one for instance is called 'alternate nostril breathing'. you pinch your nose with your thumb and forfinger, then you take deep breaths IN through one nostril while keeping the other pinched off with your thumb, hold it for a second, and then breathe OUT the opposite nostril by pinching off the other nostril with the forfinger. (i hope that makes sense, if not let me know and i will try to explain better)

3) the most common and worst of them, seem to be coming from the *exact point* where my head and neck meet... that little 'dimple' kind of area... these are *very* sharp, and i call them the 'knife headaches', because it feels like someone shoved a kife right into that point and then pushed it all the way through my head. the only thing that i have found that will help these is to literally pack the whole back/sides of my neck, top of my head, and forehead in ice. ohhh i have *lots* of ice packs always on hand haha. i usually do that until my head is pretty much totally numb (about 20 min.). after that, they usually go away. *occasionally* as the cold wears offf i will have to pack my head in ice twice before it stops, but not usually.

i hope that helps you... as i said, if you need clarification on the 'alternate nostril breathing', or anything else, let me know. there is another breathing type that i sometimes do, but alternate nostril for some reason works better, and is a bit easier.

with much warmth to you,
Nova

[corina]

Hi Nova, welcome to DINET! Hope you will feel comfortable and find the answers you need here!

[Katybug]

Hi Nova! Just wanted to say hello and let you know that you are not alone!

[bigtrouble]

120 bpm is very high if that is your resting heart rate but at the same time, it is good since it gets the doctor's attention. Do you take beta-blockers?
Mine was 92 to 97 bpm and since it was under 100, they considered it normal. Getting up to go to the bathroom and other minor things like putting on cloths all of a sudden became a big deal. A few times, it would spike to 120 and it felt like a fish flopping around in my chest. The chest pounding was really bad. Once, I had to just leave the groceries at the store and get out and lie on the grass.

It took a while to finally get a prescription for beta-blockers. It helps quite a bit but I have a mix of symptoms and beta-blockers doesn't deal with the rest.

You had to quit your job?

[headhunter]

Welcome.. been gone years myself. Yes I too am taking a high dose of Beta (Inderal)....normalized my pulse. Even when standing. But like stated above it doesn't take the other feelings away. Hang in there, it will not cure, but will get better. And we all know the issues of others dealing with an invisible disease.

[Nova]

Hello to all of you! and thank you all for the welcome.... sorry if it seemed that it took me a long time to respond... i thought i would have some sort of 'notification' in my email, or something that would let me know someone responded. i did not know that you did. i will check more often now. i so very much need to know that other people can (and how they do) 'live' with this....

as far as my resting rate being 120bpm, it will go as high as the 170-180's with *very mild* exertion. because i have the 'hyper-adrenergic' type, i only pass out when my heart suddenly jumps into 'a-fib', because my blood pressure actually skyrockets instead of the more common BP DROP with posture change in the non hyper-adrenergic type. that 'drop' in BP is usually what makes people pass out from what i understand. though 'a-fib' it isnt a life threatening arrhythmia, i guess my system just cant handle it, and i thank God that it doesn't happen too often. and oohhhhhh yes how uncomfortable it is.

as far as the beta blockers, i have tried many times, and many different ones. the problem is that when i truly lay down flat, my heart rate AND blood pressure go to a total normal (as with most POTS. i have IST as well), so i then feel very dizzy and.... just strange... i cant put it in words. i *have* come close to passing out in bed on beta blockers, because of that. once you have a medicine in your system, you cant exactly tell it "okay i am laying down now, i dont need you to be active in me right now" haha. and unfortunately i do spend quite a bit of time in bed. so it is tricky. my cardio dr. told me that instead of taking it every day now, that if i feel the 'a-fib' coming on to 'chew one' (break the extended release coating), and that usually works quickly to at least get me back to a normal rhythm, even if it is way too fast. so that is where i am with beta blockers.

and yes, i was an RN for 17 years before i just got way too sick to work. walking from one end of the hall to the other made me seriously out of breath, with a really high HR/BP... let alone all of the exertion of caring for the patients. it is one of the *major* things that hurt me so badly, because i LOVE being a nurse. i can't help feeling like it was taken away from me... with SO much else... i am sure you all have things that you lost because of this illness that hurt you too. and now that i know to check here more often, i will try to be there for as many of you as i can too.

questions for you guys:

1) have any of you had the cardiac ablation/pacemaker procedure, and did it work?
2) have any of you ever heard of a procedure called TVAM that supposedly uses a large baloon angioplasty to cure dysautonomia? did anyone have it done, and did it work?
3) have any of you ever gone to a naturopathic dr.? did they help you?

again, thank you so much for the warm welcome. i hope to be a positive addition here. with 17 years of being an RN, at least if anyone has any questions with terms dr's use, or things you dont understand in that context, i am happy to help. (remembering that i can not diagnose, or *tell you* what you should do... that IS up to your dr.)

Nova

[MomtoGiuliana]

Hi Nova

If you click on the box "follow this topic" (top right of this page) you should be notified by e-mail when anyone posts.

Someone else posted recently about TVAM: http://forums.dinet.org/index.php?/topic/26804-tvam-transvascular-autonomic-modulation-treatment/

I did see a naturopath initially. It was not at all helpful to me. Just expensive!

[gjensen]

Nova, welcome. The ladies here are kind and helpful. I wish you well.

[statesof]

Hi Nova, welcome to the forum, glad to have you.

[shrparatch]

Hello Nova,

I can relate to your trouble. I too am a nurse and it truely is more than just a job. While I am still working, I am very close to losing my job. I have been taken out of work in a wheelchair on so many occasions that I have lost count. I hope that you get better and find support here. I am struggling with how to cope with this disease. I am thankful that I am still able to work, but very upset because that is all I can manage most days. I have to take a nap after work every day and most often am left only able to lay down the rest of the day. My house and family have had to be put on the "back burner" so to speak. I long for the way my life used to be.

[Nova]

i am so sorry shrparatch... i know this feeling WAY too well... before the Dysautonomia landed me in the hospital for almost a year in/out (i counted... around 8 1/2 our of 12 months admitted in the hospital, not home. when i could feel my body just totally giving way, i refused to stop working... though i would cry to and from work constantly in sickness and pain. until my nurse manager told me "look, you are a good nurse, and i have never had a complaint about you from the patients or other staff... but it only takes one look to see you are very sick, and are dragging yourself into the ground. please, resign proplerly and get better. i have no reason to fire you, and when you feel better you will still have a job here if i have any say at all. you are not doing yourself *or the patients* any favors by destroying your health."

i left crying. within weeks i was in for almost a year of being hospitalized. it took me years, but i realized she was right. i was not doing *anyone* any favors... i cant help anyone if i have destroyed my ability to do so by pushing what i knew was dangerous. i don't expect you will accept that fully right now... at least for me that took time.

gentle hug

[shrparatch]

Thank you Nova,

I just can't see myself not working. While like you I tend to drag myself most days and at times think that time off would do me good, I am the only income right now. I refuse to let this beat me. As long as I can manage to be upright I will continue to work. Thanks for the hug and my prayers are with you.

[MomtoGiuliana]

Nova and shrparatch--just want to comment that many people do improve over time with the right treatment, or just with time. I was home/bed bound for nearly a year and now I can say I am 90% back to normal (and have been for years). I know someone very sick with POTS for over a decade who is now inexplicably but thankfully showing great strides in improvement. My doctor told me that the typical time to recovery is 4 years. But I have seen many people come and go on this forum and many go from very sick to able to work in less time.

[Nova]

thank you MomtoGiuliana. it has been a looooong time...it has been 7-8 years and i seem to be getting worse. the constant "you don't look THAT sick" has morphed into "you have ruined your life", and "you are not trying hard enough". right now the only way to have a roof over my head and eat is to live with my mom and dad. and my mother *always* knows how to make things worse. expressing and putting THAT much stress on a nervous system that is THIS messed up, is like giving someone with liver cirrhosis a glass of vodka with every meal. i even had my therapist talk to her and he said he did not want her to come to sessions anymore. at least i know what is triggering it over and over daily. now to get out of here... i do have a plan, but i have to wait around 7 months or so before i can go. people seem to think that just because you have been dealing with an illness or pain for a long time that you "get used to it" or "adjust". NO, NO YOU DON'T. if anything every passing year makes it more extremely frustrating.