Hyper adrengic

[Guest Julia59]

WEll this is a bit of a vent-----sorry about this........

Kind of graphic so please forgive me...........

I noticed when I strained to go #2 I sometimes have pretty bad ANS symptoms following. This has not been a good day for me, as my bowel motility has been pretty bad lately----so this just adds insult to injury-----------

AS i'm sure you all know---i'm going through quite a struggle with my cervical spine stenosis with the recently diagnosed mylopathy---weakness in legs---and increasing POTS symptoms. The compression on my brain stem is also a concern, and I think going to the bathroom is a problem with this----thus the ANS symptoms, pain, and so on. I can feel my spine crack from my cervical spine to my lumber spine, just from going #2. How crazy is that?

I'm taking cerefolin---half a pill a day, as that is all I can handle. This does help some with the fatigue and cognitive function, and gives me a little more stamina. It does not work all the time---but i'll take what I can get. I can't take a whole dose or I get to jittery. I tested this and put myself through 5 days---until I finally gave up and proved to myself it was too much. It's hard to believe how sensitive I am to meds. I get very self conscience----and sometimes feel like I might be over reacting, but i'm a fairly realistic person, and I know the reactions are NOT in my head.

The main complaint for me is the jittery/hyperadrengic feeling----and of course the overwhelming fatigue, pain and weakness. I now know that Dr. Heffez is correct in his recent diagnosis of mylopathy as my ability to get around it getting very difficult. It's getting a little scarey. I'm praying this will pass, and it's not as bad as this----but i'm not so sure with mylopathy because it is progressive. I'm afraid they only way it will go away is with surgery to take the pressure off the spine. I'm am so worried I would not be able to handle the anesthesia, as I would be under for atleast 6 hours for a full cervical spine laminectomy.

You were all told I was going to The Cleveland Clinic on the 9th of this month, but we had to change the appointment to the 7th of October. It's Ok---because I didn't expect to get in until Nov. anyway. Hopefully someone there can help me get a handle on this mess, and i'll have a better handle on what I need to do.

In a way I figured it might not be that bad as I could still function----meaning get out of bed, take a shower, and handle some mild activity. Then these things started getting more difficult to do, and now I can't even go walk along the side of my husband at the grocery store to help him with the list. This Saturday night I was dizzy and light headed the whole time, and my legs were like rubber. I kept losing my balance, and it felt like someone was trying to push my head down into my shoulders. The pain is getting so much worse, and the worst part is that I can't handle any of the heavy narcotic pain meds which can be so helpful. Yes tylenol helps----for about 5 minutes............ Ice works pretty good, but it's so temporary.

I needed to vent a bit as all of this bullroar is taking a toll on me physically and mentally. This continued light headedness is really getting to me, and now I notice when I turn my head in various positions my breathing is affected---mostly when I turn my head to the left. I'm going to quit my moaning and get myself to bed.

Thanks for letting me vent----this has helped me through yet another jittery/hyperadrengic attack that I just didn't need. Nothing worse then having that when your too weak and tired to deal with that.

Thanks again,

Julie :0)

[Poohbear]

Hey Julie!

I see you're still up. I hate that for you but I'm glad I'm not the only one

I thought about calling you but when I looked at the clock it was around 10 and I thought #1 that was too late to call and #2 I was hoping I was about to go to bed.

I've noticed something odd lately...my sleep cycle is all off but if I stay awake until I'm really tired and falling asleep I tend not to have the horrible autonomic spells that wake me from a deep sleep. I tend to get much better sleep although I'm still restless. Before, I was waking up between 3am and 5am with horrible spells (not every night but once or twice a week). The weird thing is that lately I seem to have a lot more anxiety about going to bed. I'm guessing it's because I've had such horrible spells at night and it's so scary being alone and not wanting to call people in the middle of the night that I do better not going to sleep until my body makes me. What can I say? I'm not "traditional" That's my hyperadrengic story for today!

I don't know what to tell you except just hang on, continue to do the best you can and lets hope you will get some answers soon.

((((Hugs))))

[mom4cem]

Hi,

Sorry you are feeling so terribly My symptoms most of the time get worse also with the #2. Mostly for me I guess it is the straining, causing the blood flow to change. I will get a headache at times, lightheaded, shivers,,just plain miserable after. Last night I started back into the slumps again. Feel like I can't breathe, chest heavy, have the shivers/shakes, b/p fluctuating. A real mess. I also get one sided heaviness in my face, eye neck. I know I have issues with my neck but have not pursured it since it has not yet gotten really bad.

Hang in there and I hope you get some answers at your appointment. Wishing you feel better soon.

[Guest Julia59]

Poohbear, and mom4cem,

Thanks for your support---it really means so much as this has been one of the worst times with my POTS and other spinal issues. WE are having another heat spell---and that doesn't help matters.

Poohbear, I hope this sleep cycle continues to work better for you. I hate that ----waking up in the middle of the night with a bad spell. I went back to sleep this morning after my husband left for work. I woke up out of a dead sleep like you, but this time it was a bad dream. I was dreaming that my heart rate was out of control and that I had BRADYCARDIA at 35 bpm----it was so real. When I felt my pulse after I woke up from the dream it was fast----but not bad, probably just shook up from the dream.

mom4cem, don't let that neck go too long. You must be very careful when dealing with a bad neck because if you let it go to long some of the damage might not be able to be reversed. Dr. Heffez warned me that if I don't do something (surgery ) I could get worse. He could not promise my symptoms would be gone, but did tell me that they shouldn't progress. Dr. Bolognese in NY told me that my sympathetic nervous system is very irritated. I know they are both right, but it is still hard to accept, and I still want to go to the Cleveland Clinic to get their opinion on all this.

If I over do it I will get so profoundly wiped out that I can literally feel tremors inside my body---especially all up and down my spine and the right shoulder and arm. There are days I don't have to do anything to feel this.

One time my dog was on my lap panting and I thought my heart was racing, and realized it was her-----that is how terribly sensitive my body is. Basically a ball of jitters...........................

So sorry to complain like this----but all this has been scaring the heck out of me, so I needed to vent. My first post was late at night, and that is when I feel the most vulnerable. I'm hanging in there--------

I have a family picnic with me husband's family. My husband and I are having it. My son and husband are doing most of the work preparing for it. I just have to do small things, and be up to making the macaroni salad that day. My husband chops up all the vegetables that go in it, so basically I just mix the mayo/sugar/milk in---as I never measure anything, so he would have no idea how much to put in. I also add hard boiled eggs----but I leave out most of the yolks.

WE are also making Choc. Chip cookies---my hubby will help with that also. I use "Smart Balance" spread in place of the margerine. NO TRANS FATS----

Plus it makes the cookies stay fresh longer.

Thanks again for your support------------

Julie :0)

[Guest Finrussak]

I dont know if this will add to the info but one of my very first weird symptoms years ago was erratic heart rate ( brady to tachy...esp if I scared myself after the brady ) or skipped beats, whenever I had to use the bathroom...and then adding to it months later was whenever I crouched or bent over for a long time ( like to tie the kids' shoes).the same stuff happened. At that time Drs were not even thinking dysauto or the Lyme thing...but a very kind patient cardiologist holtered me and noticed electrical changes during those times. It was concluded that the VAGAL nerve ( which also runs thru belly) was causing the symptoms. They guessed as to why ( inflammation due to Lyme, and also maybe being born with a vulnerably placed nerve..later they declared it damaged as I have other neuropathies- most people have damaged finger/toe nerves I get to damage the main trunk )

Anyway once the dysauto stuff got bad and became a possibility, others agreed on at least that part. I felt weird...freaky...after all whose heart nearly stops from just bending over or pooping???

Now, if I am flaring with Lyme or just ill, and in the ER when the push my belly to check for GI stuff??? well, my heart monitor goes so crazy they alwasy call everyone in to watch the "tricks"!!

even Dr, Grubb agreed with the explanation so I guess its possible.

Maybe for you too, its your vagal nerve trying to compensate for the POTSstuff and/or has become sensitive to position/pressure changes.Maybe if we are born with being predisposed to POTS stuff also has us having these other things too? The same goes for stenosis ( pressure on neck nerves) and neck twists causing heart rate/rhythm changes. The vagal nerve has branches thru neck as well. This also explains some of us being intolerant of turtle necks or of not being roughly examined near the neck.

Makes sense considering the vagal nerve majorly functions as part of the autonomic system, so why wouldnt it be screwy????

[Guest Julia59]

Finrussak,

Thanks for the information on the Vagal nerve. I really think mine is affected to some degree, as my neck is a mess, and I seem to have problems when I have belly problems. My vagal nerve seems to be highly sensitive.

What I wouldn't give for one day without all this bullroar.

Julie :0)

[corina]

Hi Julie,

I'm sorry that you have a rough time. I wasn't able to read everything, just want you to know, that I'm thinking of you!

Corina

[nantynannie]

Hi Julia,

I am sorry that maybe I don't know your entire situation, but when are they going to do something about the myelopathy? As I am sure you know, it is usually a fairly serious condition. Are you going to have surgery soon to relieve the pressure on your spinal cord? Again, sorry that you might have already given info on this, just wanted to check on your condition. I can definately relate on the number 2 thing, like everyone else said, my doc told me it is the vasovagal response. Take care as best as you can-hope you are better soon,

Ann