Twitching in face and body

[Guest Julia59]

Hi folks----tonight i'm a mess of sorts.

I have noticed a lot of twitching on my face lately----forehead, eye's, chin, mouth--ect. I also noticed a strong twitching on my left upper arm. Twitching on my fingers----and a nerve twitching in my belly just below the rib cage.

I have also been having a lot of adrenaline surges---and they can last hours. I have been fighting getting the Klonopin prescription filled as I just don't want to depend on it.

My whole spine hurts---especially the upper spine where the neck meets with the thoracic spine at C7-T1. It feels like there is a fork sticking between those two vertebrae. Dr. Bolognese at The Chiari Institute said my sympathetic nervous system is irritated---but he did not elaborate on what could be causing it.

He seems most concerned with the cervical/cranial instability/brain stem compression---and the other NSG Dr. Heffez is more concerned with the cerivcal spine stenosis. The NSG I saw at the Cleveland Clinic last week seems to think it's something else---systematic causing my symptoms, although he did not rule our my spinal issues altogether.

Lately, when I eat, especially in the evening my belly blows up like I'm nine months pregnant. I am having a horrible time typing this because i'm so shakey---and my belly is up in my chest----a sharp pain running across my upper abdomin near the rib cage. This seems to be secondary to these adrenaline surges. Every time I get out of this chair i'm in right now my legs are shakey.

Help! My body is not behaving!

I go to the PCP tomorrow---I have been avoiding her, as I just don't want to deal with telling her about this mess. You know what I mean? Don't you all just get tired of explaining all this over and over again?----I'm so sick of all this...............

I'm in the midst of an attack---so bear with me and my rambling---but I thought this would be a good opportunity to divert my thinking----but believe me it's hard as I keep burping so much it feels as if i'm trying to cough up my stomach----and of course my insides feel like they are shaking.

I had a little homemade gravy on my baked potato tonight and a small piece of boneless pork chop. I get this way a lot after eating. I don't even want to think about my gall bladder going----last I heard it works 60%, and that was in 2000. Really----60% isn't bad. I have seen a lot of people on this board worse off then that.

For some reason eating a meal--usually only in the evening---i'll get these spells---like food or the act of digesting is a trigger. In 2000 i was not even able to take a few bites off a cracker without triggering these events----it went away very slowly---but it never went away completely. Most of the time I can eat----but it's easier in the morning---and afternoon.

This is getting so depressing........

Julie :0(

[lalalisa]

Julia,

Hello! I'm really sorry that you are having such a rough time right now.

I know exactly what you mean about putting off/dreading going to the dr. because you just get sick of rehashing everything....it takes so much energy (emotionally, mentally, and physically). Not to mention that sometimes I feel like I'm just always complaining.

Have you had this twitching before? Do you know what it's from?

Hope your week Improves greatly and that your dr. can offer some help too.

Hang in here,

Lisa

[Gena]

Hi Julie,

I'm so sorry you're going through such a rough time. I am having a lot of autonomic storms lately too, so I know how you feel. And dinner is always hard to digest when I'm in a POTS hole. Seems like it takes forever to finally get out of my stomach. Have you ever been dx'd or tested for celiac? Do you notice a flare up of symptoms after you eat something with wheat or grains in it? Just curious, b/c gluten can wreak havoc on your body if you can't tolerate it.

As far as the twitching goes, I have that on and off for years even before I had POTS. It was at its height before I was dx'd with celiac. After going gluten free the twitching subsided a lot but I do get spells of it from time to time. It can be my face, my eyelid, my foot, you name it. There's not a place on my body that hasn't had a twitching spell!!

I never wanted to be on any meds, but I do take Klonopin from time to time. Like you, I was afraid I'd depend on it too much also. However, I find that I take it only when my symptoms are acting up, which can be for a few days, weeks or maybe even a few months at a time. However, I have easily been able to go off of it for months at a time too, when my body is feeling better. I mostly take it right before bed and it does help.

I hope your symtpoms get better soon. I'm sending hugs and some calming tea your way. Hang in there girl.

Gena

[michiganjan]

Hi Julie,

Enough is enough, all right! I am glad you will be seeing the doctor. Let us know what she says.

When I have bloating with burping I take a simethicone tablet--gasex or mylanta gas. It really helps take the pressure off from gas.

Yes, I do know how you feel about going to the dotor again and again and never having anything positive to report, just more of the same symptoms plus new ones. YIKES! Just let us know what she says.

[Dizzy Dame]

Julia,

I'm so sorry to hear what you're going through. Here's a ((((HUG)))) and I really, really hope you start feeling better.

Hopefully things will start calming down

- lauren

[ben_uk]

Hi Julia,

I'm so sorry to hear what you are going through. Enough IS enough.

I am also going through a really bad period. I just hope it improves, but at the moment, there have been no signs.

What helps you?

All the things that used to hewlp me (yoga, pilates) seem to aggravate things at the moment.

I take Vitamin C and B complex (a good brand) - not sure if it helps.

I also have neck problems (feelings of instability).

Oh - I just though of something that may help you (not sure) -- you might want to try a Chiropractor (wait-I know what you are thinking - "I can't have manipulation") who is trained in SOT (Sacro-Occipital technique). It is a very gentle form of chiropractic which places great emphasis on alignment of the pelvis. If the pelvis is aligned/stable, this will take a lot of pressure of the neck (the bottom and top of the spine are inherently related). Trust me - when I went to my SOT chiropractor she said "I was falling apart". My Pelvic joints (called the sacro-illiac joints were completely separated and my neck was in a terrible position.

If you take up my suggestion, make sure they are "advanced" trained and know about all your problems (i.e. you must never have manipulation to your neck).

See http://www.sorsi.com/prosearch.cfm

If you go ahead, phone them first and tell them about yourself. Mine knows I have had serious neck injury together with suspected vertebral artery injury so she never manipulates my neck.

It hasn't helped with my POTS symptoms so much (although I dont know what I would be like without the treatment) but it at least keeps my neck and back in better shape.

Hope this helps.

Contact me if you have any queries.

Ben

[Gena]

Ben,

This is great info about the chiropractor. I used to go to one in Charlotte, NC that practiced a similar theory and gentle manipulation. He never cracked my neck. I got big results within 6 weeks and felt great -- best chiro I ever had. I moved to Florida several years ago and my neck and pelvic area have really gone down hill in the last year. I really need some therapy. Thanks for posting this link!

Gena

[mom4cem]

I also get twitching, not sure what it is from though. I suspect it is my nerves being irritated from vertabrae pressure, especially in my legs, and my neck muscles are always tight, my arms are always getting tingly in certain positions,,I think that is why I twitch.

Adrenaline surges, I get them every day, several times a day. Sometimes it leads to some nasty tachy events other times it just feels like my stomach is dropping, like on a roller coaster with internal trembling. When it shuts off, I know it, all of a sudden it's calm. I have been taking a beta blocker(not doing much good though),klonopin when I need it, some vitamins including l-theanine, which can help calm the nervous system.

Eating diverts blood from elsewhere to digest, so I have read. I have become tachy after eating as well as bloating.

Sorry I have not much to offer, but I do hope you feel better

[morgan617]

Julia, I was talking to my dad on the phone last night and he said my aunt had gotten a stent for her cervical stenosis a few years ago and was doing great. He's getting one also. Has anyone talked to you about that? morgan