Chiari Malformation Community
5 mo post op
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5 mo post op

OK, I tend to drop away when I'm not doing well, and really try to be supportive if I am able, but this week has been the worst for several months now.  I have been going downhill for several weeks, since "negative stimulii" # 1-3.  
What do you do when your spouse has a broken leg; you have to step up when there is no family around, and no supportive services.  I have typically bounced back within a few days after too much work, but this time I have not.

The biggest problem for me--I guess-- is dysautonomia.  My body temp is all over the map, from 94.9  -  99.8.  My BP remains "normal", although variable.  Yesterday, I had not one, but 2 "panic attacks" (again, I *guess*!), upon lying down, which lastest for hours. I have thrown every Rx at it, including salt and alcohol, just trying to feel "better".
(If you dont know what dysautonomia feels like, it's like you're dying-- & want to).

I have an email out to my NS, but he already knows that I have dysautonomia, so I'm not really expecting much help there.
I'll take pain any day.

Any experiences & advice would be welcome.
7 Comments Post a Comment
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620923_tn?1393294254

  I use to have panic attacks yrs ago and b4 my surgery, I do not have POTS or other dysautonomia...

Have u tried the http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266?controller=forums&action=show&id=266&camp=msc
forum here on MedHelp.....there are more there with dysautonomia...not too many there with Chiari....but, they may be able to offer some insights....
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Avatar_f_tn
Yes, Selma, thanks, I have.
Those of us w/Chiari & dysautonomia seem to be a rare bird within rare birds.  I think we're the ones who get the CFS Dx, because pain is secondary.
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620923_tn?1393294254

Well I have CFS dx b4 I got the chiari....I think it is my EDS as it is constant pain with that....some days r worse then others....and weather affects this too....
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Avatar_f_tn
I'm in contact w/Dicon on PM.  I have to wonder how much instability comes into play.  So many unknowns!
I feel like such a freak.  My body, anyway.

I have fallen asleep in the tub twice in the last week.  If you dont hear from me.......glub, glub, glub
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1667208_tn?1333111449
Hello Hello :)  Don't want to call you a freak but I am happy to have another freak to be friends with!!!  I just spent my morning trying to explain POTS and EDS to my PCP so that now that all my surgeries are maybe over that I can figure this out!!!!  So sorry you feel so bad, I can't tell you anything about how to feel better but I can tell you I fully understand how you feel.  I have ALWAYS had temp control issues and always run low.. if I am 98.6 than I usually feel like crap!  Try telling that to a DR.  I hate always sounding like I am crazy when I try to explain how I am not like other people and I know what I am feeling!!!  I have to go to my PCP to see if she will send me to the autonomic guy that I found in the area that might actually know something about POTS.  I want to try compression stockings and see if they will bring my heart rate down without meds.  I think my daughter has POTS too so I want answers so I can get them for her too.  She is going to a geneticist this week about EDS.  I am so sick of Dr. apts and so sick of just not getting "right".  I have a good day and then a bad day and I feel like I just don't ever know what is happening.  It sounds like you feel the same way.  One piece of the puzzle at a time does not work, we need someone that can work with multiple pieces at once or they will never figure us out!!!  Do you think salt helps?  I am curious about Hyper POTS, my blood pressure goes UP not down .  Do you know what yours does?  I don't know if hyper pots can still be related to EDS and I do now think EDS is a real issue for me :)  Should have listened to selma three years ago... I had never heard of anything though and once again I could only deal with the Chiari piece... SHould have listened and figured out the weird stuff first :)  I think it may still be a process but at least getting some names for things and ideas to try may help.  I think after all this surgery I need to be able to do exercise but I don't even know what to do when you have these problems.  This is why I think a specialist could help.  I am still on restrictions ( pretty full restrictions) from the three surgeries in the past month but I am hoping tomorrow when I get my stitches out that they will release me!  I just went off my antibiotics and I will be happy if there is no sign of infection in the next week.  Healing is so complicated when you have these issues.  I hope you have an understanding Dr.  and family because just having support is HUGE.  This is why I love this site, you feel like someone understands, this is why I liked your post today.... I too feel like a freak lately and that is hard to process.  Right now it is extra hard because I think I gave this to my daughter and that is a bit stressing to think this could be her journey too.  Do you know if there is an acronym for dysautonomia... can never remember how to spell that!!!  Do you get lots of nausea too?  I always had motion sickness when I was a kid and got stomach sick so easily, I am not really sure if this is "D" or Chiari related.  It is all so confusing.  My post is wandering and long... sorry, just fun to chat with someone with weird things too :)  Especially things like weird temps... did you always have that?? I did even as a small child, I used to joke that I could raise my own temp by thinking about it... I just think it did it on its own but it was always weird.  My daughter runs very weird too and feels horrible if she is at 99 degrees and it is FROM NOTHING.. not sick, just gets weird fevers!  We always thought she might be hypoglycemic like I thought i might have been as a child but POTS explains why sitting down, relaxing, eating would work too... thought it was hypoglycemic but now I know it was heart rate!  I have always sat with my legs up... and everyone comments that it is weird, never realized it just made me feel better :)  Have to clean the foot prints off my dash when I ride in the car :)  The funny things we do to compensate without even knowing!!!  IT gets clearer to see though as time goes on, especially with stories like yours.  It is hard to know if it is chiari complications or other crap and no one seems to know what kind of Dr. to send you to!!!  I even don't really know who to see for answers!  Do you have cranial instability?  Do you feel like a bobble head?  I think this is one thing I don't have... sounds like a nasty one so I am happy this is not an issue.  ... how many more tangents do you think I can go on :)  Just know you are not the only freak out there... I hope you find some help to feel better!!! Hugs being sent your way!! -Zygy
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620923_tn?1393294254

  Wear a small inner tube around ur neck to keep ur head a float just in case...no glubs glubs...lol....

Aww u r not freaks...u r chiarians with related issues...I may not have POTS, but I have issues too...lol...so, I know we do not always fit...it is like we r square pegs trying to fit into round holes....

DO u all remember that show Square Pegs?...I like the sound of that better then freaks??? what do u say?..lol....
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Avatar_f_tn
What you said, yes!  To me dysautonomia--BP, body temp, heart rate all over the map--is the worst.  at least pain can be treated.

I'm so tired of trying to figure myself out, much less explain abnormalities to pcp.  I'vebeen pouring through the "D" health pages (on the right here), trying to find "triggers".  Low blood sugar, dehydration, the ever popular stress?  (I actually think I might be allergic to fish, go figure.  This is the second time it has caused symptoms.  Yet I eat it every few weeks.  ???)

At least the warm bath brought heart rate down.  I'llbelooking for a purple flotation device, lol.

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