WinterSown

Not only is this possible, it was the basis of a DINET survey I wrote and analyzed.

Yes, most certainly dysautonomia is in the older female population with thirty percent of us being diagnosed post menopausal.

4 hours ago, Pistol said:

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I hope your balance will continue to improve. (I am wondering though - do they write your scripts indefinitely b/c of the cookies??? 😉) I know how good of a cook you are!!!!!

I make ice cream too.
Muahahahaaa

 

 

My PT is a few minutes drive, all my specialists are--I can get to any of them in fifteen minutes and three are in the same building so whoot! Every one of them has always extolled the virtue of exercise as a means of control for dysautonomia. It is not necessary to do any named protocol, what's necessary is moving your bod to improve your circulation. I have a lot of clarity during and after sessions, I also have a lot tired so I usually take a nap when I get home. When I first started I could barely do three reps of anything without getting winded and having to take a break. It wasn't just the dysautonomia I was also pathetically out of shape--I was very tubby and flabby. But, even in the beginning, I would feel a little better and a little better is better than nothing getting better. I kept at it. I'm starting to have Suzanne Somer thighs so whoot to that--never could have imagined that happening. Dysautonomia is giving me a better bod. Twisted logic, but yeah. 

My cardiologist is hilarious when he imitates the reset. He puts his hands up waving around his head and kinda growls like a doopy godzilla, it's so funny but it's so accurate. I really would sometimes rather I not be awake through it. For those who have never experienced a drop attack, I hope you never do, the sensations are akin to a hybrid of two movie scenes. If you could cross Going to Plaid from Spaceballs with any scene from Earthquake you will have a good idea oh what it is. PS...please bring a vivid imagination to that. LOL.  With everything, it helps to have a sense of humor. 

It's been six months since I have seen her. My toe to heel balance is not as good as it was but overall I am stronger. She said summertime is the toughest season for many of her dysautonomia patients, especially on humid days; I can agree with that. SImilarly, perhaps, this is why showers are so hard to get through without symptoms coming on--it's certainly hot and humid in there. I have to walk the dogs early or late in the day and I stay inside by a fan, and I always have something cold nearby to drink. I eat a lot of melon, it's in season and loaded with electrolytes. Yum!

She wrote another PT script and said she would keep writing them forever; I don't have to come in, I can just call and they'll fax (awesome!) My exercise set plus daily walking is improving my circulation and my ability to right myself when I lose balance or have a Drop Attack which is fainting without losing consciousness--you get to be awake for the reset. Ugh. One extra benefit of my balance exercises is that my calves are starting to be quite shapely--baby got gams! I'll be 62 this summer and mostly wear dresses so hurrah to that! I brought a tray of warm oatmeal raisin bars into the PT center this afternoon. The staff and my doctor are always appreciative--at 30yo he has the appetite of a horse and so do his assistants. They didn't last long. Bringing in a tray of something every now and then is an expression of how I care for them. Two years ago I had hematomas, bruises and scratches from tripping and falling as often as I did then and now I don't; it's been a while since I tripped or collapsed to the floor--staying in PT will further reduce the occurrence. They deserve much more than cookies but I did make good ones.  

I was went in kinda psyched because I've been in PT for two years and was looking forward to 'being impressive' on the treadmill--or at least much better than three years back when I had the last stress test. No, not for me, they said they were doing it with drugs--doctor's orders. Harummph! They gave me an injection and I suddenly felt very weak and brain-fried. Blech. Ugh. Skeeves. It wasn't painful but it was weirdly uncomfortable for a few minutes. It was a long afternoon of laying down under a machine that takes pictures of your heart. On the way back I stopped for coffee and a bear claw. I had to have some satisfaction to end the day.
https://www.nyuwinthrop.org/nuclear-cardiology

Best part? I have to remember for the next 24 hours I'm radioactive!

I think exercise is as good or better than drugs for helping you with your symptoms. I do walk and exercise daily and do PT twice a week. I am working on improving overall strength, core, and balance. It's super helpful--I feel better afterwards because it is good for circulation. Good luck to you.

On 4/9/2019 at 10:16 AM, Aida A said:

Thanks a lot WinterSown for your reply! No one seem to know what causes my dizziness! some blame it on anxiety and other on zoloft and some on migraine. They keep throwing on me medication in hope that something will work. I'm tired of this and can't go on with my life like this. I just hope one day I wake up and it goes away on its own. 

You may want to see an ENT and have your ears checked for abnormalities. I've met some wonderful ear doctors along the way. ENTs are very sympathetic to patients with vertigo and balance issues and will set up the right tests to determine cause if there is something physically wrong. They can also prescribe PT to  help diminish your symptoms and get you strong enough that you can catch yourself and not careen over and smash onto the ground. 

I was diagnosed with vertigo before I was diagnosed with dysautonomia. In fact, it became a significant part of the diagnosis. My primary made the initial diagnosis with a Dix Hallpike test right in his office. I do have gait and imbalance problems, I have short term memory problems and sensory overload, especially to vibrations and loud sounds. The cardiologist, EP, neuro, primary, ENT and DPT are all working as one team to keep me from tripping and falling over, nobody denies vertigo is part of my symptoms. The good news is that it does get better with treatment. I go to physical therapy for balance and core, I make an effort to reduce my sensory overload triggers, and I have a script for low-dose valium (diazapam 2mg) which is a muscle relaxant. I take a half-pill to start and it's enough to take the edge off of my reactions to vertigo producing stimuli. For sensory overload reduction I shop stores at their slowest hours or have most things delivered, I wear shades when it's bright or I am in a brightly lit store, and I also can add sound-muffling headphones which I sync with my phone--I put on music just loud enough to cancel out the sound of voices around me. Good luck. Vertigo is an awful feeling but you can get help for it. 

PS...there is an OTC motion-sickness drug named Bonine which you may find helpful in the meantime until you can get a diagnosis. 

Thank you Ellen for giving me a reason to not give up--DINET means so much. My doctors think it's healing a lot of my hurts.

Fatigue is a symptom. My EP added Mestinon to my drugs six weeks ago and it's been a big help. I saw him yesterday and asked to increase the dose so we doubled it. I drink a lot of coffee, addict level, but it helps. If you can find a stimulant that gives you some extra alertness give it a try but a little at a time.

Valium is a muscle relaxant and your digestion is helped with muscular contraction. 

V is my primary sensory overload drug. One milligram is all I need to take the edge off of too much sound or bright light. Ugh. I have to take a pill before I go into a supermarket during busy hours, it helps in crowded restaurants but say no when the waiter asks your drink order. Valium and wine leave you melted under the table. You're also not driving because it will slow your reactions.

The biggest help I got for dyssynergia was a script from my EP for Mestinon. We were not using this just for increasing my energy but WOW, it had a wonderful effect on helping me get back to normal. I used a lot of glycerine but I rarely need it anymore.

I'm sorry you are feeling these symptoms. There is no pass or fail on the TTT. It just records reactions. These numbers and your history will help build a diagnosis. I never fainted but I was still diagnosed. There are many forms of dysautonomia. My numbers are unstable and I sometimes swing into POTS but generally OI and NCS are my biggies. My EP calls it my CardioNeuroVasoVagally thing. It took some tweaking with the meds, learning to avoid triggers, eating right and a little exercise every day. It doesn't happen over night but you will get better.

The management is towards lessening the symptoms. One of the biggest assists for me come from eating a healthy diet and focusing on foods that are rich in electrolytes. Walking is a great exercise that will help with elimination. In the beginning of my symptoms I lost 60 pounds without trying and I needed surgery to close a fissure. Ugh.I  suggest that if you have any problems with your digestion or passage that you do see a gastro before you need to see a colorectal surgeon. Once we realized how dysautonomia was effecting my digestion I was able to make some changes and start improving. My cardiologist, EP and neuro do all help me with these symptoms, and all the rest of them too. This is a treatable condition--it can take a little time to learn how to limit its effects but that will happen. 

2 hours ago, Pistol said:

I make these too, I have mini-loaf pans and they are sooo delicious and easy to freeze!!! I hve a recipe that used oats instead of breadcrumbs and I add flax seed to it as well. And chopped kale - yummy AND healthy!!!!! They come out really moist due to the kale. 

That sound delicious. Meatloaf is like Chicken Soup. Everyone makes it their way and it's all good. These are a freezer staple for us nowadays. 

Meat Muffins!  Meatloaf made in muffin pans ready to go into the freezer.  I will bag them after they freeze. We love these. Just use your favorite meatloaf recipe. Bake at 325F for about 35 minutes, I basted with a squirt of ketchup. 

Ground meat was on sale and I bought a three pound pack which usually makes 24 muffins. These are also excellent with ground turkey instead of beef. 
 

rhubarb

4 hours ago, ScottS said:

"When it's not always raining there'll be days like this
When there's no one complaining there'll be days like this
When everything falls into place like the flick of a switch
Well my mama told me there'll be days like this 

When you don't need to worry there'll be days like this
When no one's in a hurry there'll be days like this
When you don't get betrayed by that old Judas kiss
Oh my mama told me there'll be days like this 

When you don't need an answer there'll be days like this
When you don't meet a chancer there'll be days like this 
When all the parts of the puzzle start to look like they fit it
Then I must remember there'll be days like this 

There'll be days like this 

When everyone is up front and they're not playing tricks
When you don't have no freeloaders out to get their kicks
When it's nobody's business the way that you want to live
I just have to remember there'll be days like this 

When no one steps on my dreams there'll be days like this
When people understand what I mean there'll be days like this
When you ring out the changes of how everything is
Well my mama told me there'll be days like this 

Oh my mama told me
There'll be days like this" ~ Van Morrison
 

Oh and, here's a quality youtube vid of Van and company doing their thing (live!):

 

Thank you thank you. Great lyrics and performance; and the tempo is perfect for that swap event too. It was very laid back and very positive. I met honey people, and ancient grain people, squash people, and gardening for therapy people, asian beetle people, park management people, and folks who are involved in backyard and microfarm agriculture. Amazing day. I am glad I went. I'm going to save that song to my favorites! 

Today I was brave. 

OMG, I'm still feeling up and  fine and it's great. I was invited out to plant swap at a college the next county over. I gave away seeds and schmoozed all day from my little demonstration table. My big sister came with, she drove and she could talk as well as I could. I had a lot of positive feedback and really spent the whole day feeling 'juiced' on adrenaline. Yesterday, I spent the day resting and drinking water and coffee, eating things mostly good for me. I also made sure I remembered to take all my doses of medicine last week and exercised everyday. I planned for the day with the best of management techniques I knew and made it through a long day.

I am grateful for my sister who helped make a long day possible, and I am grateful to myself, in a way, for saying yes and not turning down the invitation to the seed swap and discussions.  For my neurotherapy I'm supposed to do different things in different places and have fun doing it. This worked great. win Win WIN!!! Dysautonomia too often robs us of the lives we used to live--low energy and fainting are a great incentive to stay home.  I can't let d'mia take everything. I made the decision that I would do this event with or without help, and with or without symptoms. I was going to go. Planning and a partner made it possible to have a wonderful day. This was the first event I have done since my diagnosis two years ago and I was able to talk and answer questions without brain fog or presyncope. Puffs on fingernails, rubs on imaginary lapel.

I could have turned down the invite and stayed home--up to Friday night I was thinking of cancelling. I was afraid I would faint in front of a crowd,or have IBD problems, or paresthesia, or disassociate, or any of the other problems we can experience. I was gonna back out but I thought that doing so might knock me down into a hole of deep depression, and that's not happiness, I am supposed to  have more fun and joy--doctors orders. Today, dysautonomia didn't win. Today I won! Came home with a canna root too so that's great. I have no idea what color it will bloom but I don't care. Today I did something I didn't think I could ever do again so happy happy joy joy. I do expect to pay for this day, I'm not unrealistic...tomorrow or the next I expect my energy will be gone and I'll snooze for ten hours. Oh well. Such is life. 😉

Should not be a problem to be relieved from serving. The courts are very concerned with their jurors, they are very sympathetic.

17 hours ago, JimL said:

No meds other than what I am already taking. Synthroid, metoprolol, lisinopril, esomeprosole and sucraflate. He said he doesn't need to see me. Thats one thing that threw me off that led me to believe in the brush off. What's a 3 monther?

Perhaps he wants you to go back to whomever prescribed all those drugs. 

A three-monther is your every-three-months appointment with your doctor.  

A lot of dysautonomia patients have temp regulation problems. It's like the temperature dial only goes to high in either direction. I can't wear pressure socks because I overheat and can faint, but if I don't wear the pressure socks I can faint. No win there at all. It's winter and I'm in my office barefoot and wearing a summer shift. I also have a space heater going and aimed at my pelvis which is always hurting somewhere.  Remember the movie Annie Hall and she dressed in layers--this is what you need to do. I have all manner of vests, sweaters and leggings in different thickness/warmth. I hate the temperature swings especially sweating like rain. I had to be more flexible with myself and change my clothes as needed rather than wearing the same thing all day that I put on in the morning. Definitely talk about this with your doctor and try to find ways where you can be more comfortable.

You need help controlling your symptoms. Why doesn't he want to see you anymore? Haven't you been prescribed anything yet? You don't have a three-monther coming up?

I think the doctor gave you fine advice and he told you the truth. 

53 minutes ago, JimL said:

Went to EP Cardiologist Yesterday and I am still wondering what happened. They did an EKG, BP/O2/HR listened to my heard, read the report. He then goes on to tell me that these things are hard to treat and there's not much that works well. it depends on the underlying cause. Ok.

This is the absolute truth. It is very hard to treat, even when they know the cause.

I went through my history and he says to get the GI stuff looked at as GI problems can cause a vasovagal response that causes these problems and to get my thyroid checked too.

This is true also. My EP calls my condition my CardioNeuroVasoVagalyThing. Thyroid check won't hurt, you might have a problem they can treat and help you get your energy back.

He talks about some conference he went to in 2015 and how they said the three most important things were more salt, water and exercise as the desire to lay down and doing so will cause deconditioning.

I will emphasize exercise training with a Doctor of Physical Therapy as opposed to a coach at the gym---we are way too complicated. A DPT will assess your capacities and create a program tailored to your needs. Mine keeps me moving throughout the entire session--it is a great workout and I come away feeling stronger and better innervated. 

He said it's like a cardiovascular migraine. So I asked him, are you saying this is all in my head? He says no, that if he thought it was, he'd send me to a psychiatrist. He then says that my heart is fine, this won't kill me, I just have to find a way to live with it. I said, what if it makes things such that it gets in the way of work? Well, that happens and some people can't work anymore. Ok. I am starting to think I am being shuffled to specialists and there's nothing any of them can or will do. It's like a form of gaslighting. Or is it like this episode of Seinfeld:

I haven't heard it called a cadiovascular migraine but okay, each doctor has their own vernacular. You don't need a shrink, you're not crazy--your ANS is. You are not being gaslighted, you are being told the truth--including finding ways of making your life get better. It's a LOT of tweaking your meds, your foods, your water, your habits, etc. 

At this point, I don't know what to do. This doctor wasn't old. Maybe 40-45 at most. If 1-3 million americans have this, why is it treated as such a rare and in some cases, fictitious disorder?

It isn't fictitious, you just didn't like what you heard from the doctor. Try he doctor's suggestions and tone down the hype that you keep telling yourself. You'll get better but it's not overnight, there is no simple solution,  and it's a lot of adjustments for meds and lifestyle.

 

 

I am sad to hear he has this but am also relieved for you both because now there is a diagnosis. Being believed is the first part of healing. I hope that his doctors are compassionate in how they help him manage the symptoms. I wish the best for your family. 

I get full blown attacks. I faint, I go lay down, my arms and legs suddenly curl like I've become a human letter 'C, feels like jolts going through my whole body. I make sounds ;-(.  I really don't think anyone should put a restriction or limitation on the possible effects this has on your children.