Life Update

It has been quite a while since I've posted a life update.  It was much easier for me to remain active in the Dysautonomia Community when it first started, but has steadily become more difficult as of late.

A fainting episode I experienced a little over a year ago caused a concussion that resulted in a mild seizure disorder.  Though my seizure disorder is now well controlled by Zonegran, the drug itself causes mental fatigue.  Approximately two weeks ago, I had another concussion.  My mother returned home from work only to find me unconscious in the stairwell, and called Emergency.  I am now recovering from a post-concussive head injury.

I just wanted for everyone to know that I have a great love for this community, and each of our members.  I apologize for my intermittent presence in the community.  Even when I am not writing on the boards, each of you are in my thoughts and prayers.

How is everyone?  Any new treatment changes that have been working well?

[beema36]

I am so sorry u have been having such a horrible time! My heart goes out to u. Take care and I am glad.the seizure med is.working.
Beema

[lilmissposey8088]

Concussions are aweful, Sorry you are going through that. Been there, hated it. Wishing you a speedy recovery and glad to see your doing well enough to chat!

[Heiferly]

Aww, pal, I feel like we ought to have a Frequent Fainter's group hug here.  I'm so glad they got your seizures under control!!    But another concussion?  Oy.  We finally decided "enough is enough" after my last one where I damaged my retina (thank goodness that has healed up nicely!) ... soooo ... and I suspect this is probably the one place where I can count on NOT being laughed at, YES, I'm getting a helmet.  I've only agreed to wearing it in the house.  Anyway, Hal, have they ever suggested a helmet to you?  I am tired of hurting my head; I really hope this works.  Here's the one I found online that seems to be optimal for my needs (and least embarrassing in my opinion?):

http://www.plument.com/protectacapplus.htm

I'm supposed to work with my doc on the Rx at our next appointment.  What do you think?  How bad does it look?  :-/

So are you having a lot of symptoms from your latest concussion?  I'm so sorry you're going through that crud again.  Head injuries are no fun.  If only we could line our entire homes in bubble wrap ...   :-D  Or trampolines, that might be more fun ... except when we're nauseated ... ew, no, nevermind.  Scratch that idea, too bouncy.

Take good care of yourself.  We'll all be here thinking of you whenever you're able to check in!!  

HUGE HUGS!!!!!!!!!!!!
-Heiferly.

[Groggyfroggy]

My dear Heiferly and Halbashes,

I don't know whether to be happy or sad that I can read the words "Frequent Fainters Club" and know that although you're making a joke, you're not joking about the frequent fainting part.  It is so hard live life like this...never knowing when you're going to end up on the floor.  I've never had a concussion (for which I'm very thankful) but about 3 weeks ago now I fell through the back patio door.  That was not good...although in retrospect it could have been much worse. Just cut a small piece out of one finger that needed 3 stitches, and got a laceration on my leg that needed 6 stitches.  Otherwise only some scrapes and scratches here and there.

Just wanted you to know I was thinking about you all...and the helmet idea sounds good to me.  I know it will probably be uncomfortable, but the benefits would outweigh the lack of comfort.

"Groggyfroggy"

[Heiferly]

Okay, going through the patio door definitely earns you a club membership card!!  :-p  OUCH!!!  Yeah, I know we sort of bounce back and forth between joking about this stuff and dealing with the genuine hardships it brings.  I try to err towards the joking side whenever I can, because it's just my personality to put as much effort as possible into making light of things.  But I really do have empathy for everyone else who goes through these injuries from faints and falls as well as the emotional toll it can take on us and those who care for us.

I hope your injuries are on the mend and thanks so much for the kind words of support on the helmet!!
Hugs,
-Heiferly.

[mtgardner]

I had missed seeing your posts so thanks for checking in and letting us know where you were and what was happening...Major ouch!  I am so sorry you have had a concussion.
It sounds quite serious and painful.  I am hoping your recovery goes smoothly.  You have been missed!

My first respoonse is I wonder if there is a way to protect your head from further falls.
I think that future "fashion and accessory line"  that has been tossed about on this forum should include some soft and beautiful helmets!  

Best wishes for a speedy recovery....Marie

[beema36]

Heiferly- the helmet.is.a.wonderful idea. It's been used successfully for people suffering seizures so y not fainters. I am sure fashionable helmets could.easily be made. Shall we all.start a business?
Marie- I am sorry to hear ur on crutches. I am coordinated on crutches so I would be at risk for a fall in that regard. I sympathize ln dealing with elderly parents long distance. Mine r both in a nursing home some.distance away and at this point I can't seem to travel so what a mess and worry. I wish u well with your parent.
Beema

[NYCpots]

I am so sorry to hear you've been in "the ditch," as I call it.....Hang in there.........I'm so so sorry but I'm hoping you're able to (somehow) keep your spirits up. I'm thinking of you! - Brita

[halbashes]

Thank you all so much for your comments! I've had a couple of head injuries in the past, but this one seems to be healing particularly slowly. I haven't even slept in my own bed these past weeks because I've required my parents twenty-four hour care. My mother had to take leave from work.

I am improving. My doctor seems hopeful that my constant migraines will disappear within the next two months, maybe sooner. My sleep schedule is way off. I sleep a lot, but wake up at bizarre times. I'm also experiencing a lot of twitching, and aura-esque type symptoms. Nausea has been off the charts too, but thankfully I have both Zofran tablets and the injectable solution. I am still on my weekly saline IV regime as well, which is just more helpful than words can describe.

Heiferly, you are not the only one considering a helmet. My doctor has given me a script for one, and I will soon have an appointment for sizing. I too am more than a little embarrassed about the prospect of wearing one, (I've actually opted to calling it "husband repellent" rather than "helmet"), but the collection of head injuries are just too much to deal with. I will be sure to check out the one you are considering once I am back at the computer, I am typing this from my cell phone.

So sleepy... Good night everyone!

[tonyad]

   So good to here from you :)
Just know that you have been missed. but we also understand that REST is Vital and also kinda hard to jump on the Forum in the midst of a Seizure! or just plain feeling like dirt!

   I too am glad that your meds are getting things under control.
Be Safe,
~Tonya

[laurab2818]

I'm so sorry about your recent concussion and hope that things get better for you soon.  It's good that your parents are able to care for you.  Thanks for letting us know how you are doing.  You certainly have been missed.  Helmet sounds like a good idea, though I am sure you would rather not have to do that.  Perhaps you and Heiferly are starting a fashion trend here in the Dysautonomia Community.

Take care,
Laura



I have never had a concussion that I know of but have hit my head many times on all sorts of things, mostly cabinets when I am foggy/crashing and need to lie down.  I am much more clumsy now and seem to misjudge where my body is in relation to things around me even when they are familiar, like in my own home, e.g. rounding a corner and walking into the wall.

[evo123]

Big Hugs to you hunny x we do miss you here x

I hope things ease up for you shortly and you get some relief it must be awful dealing with added symptoms ontop of the *usual* dysauto ones x

[MollieRose]

I'm so sorry you're dealing with all those symptoms, I know how rough concussions can be. I spent the whole summer fainting almost daily (mine was from SVT which caused my blood pressure to drop). I ended up getting a full contact karate helmet (the white soft kinda smushy ones, but mine was still firm enough to keep me from getting injured). I had to do that because I had no diagnosis at the time to warrant my insurance paying for a "real" helmet. I had to wear mine in public if I needed to go out (like to the numerous doctor visits), because I had pretty much no clue when I was going to hit the ground. I looked at it with a sense of humor and decorated mine with permanent markers and stickers, lol. People had no idea what to make of it, and I don't think I really ended up explaining it to anyone (in public). I hope you start feeling better soon!!

-Mollie

[Groggyfroggy]

I'm so sorry you're going thru' such a rough patch.  I know what it's like to have to have your parents take care of you.  When I first became disabled, I had to move home with my parents.  I'm glad your Mom can be there for you.  I know that's not what you would choose.  I hope things get better soon.  The constant migraines and nausea must be terrible.  I have migraines too, but not so frequent as they used to be.  
Just wanted you to know I was thinking of you.  As for the helmet..whatever it takes to prevent another concussion.  
Just wanted you to know I was thinking of you...words seem inadequate sometimes...
Groggyfroggy