I know about mental health as well as dealing with medical problems, i am so frustrated that they keep putting me on more medication, I also take seroquel for anxiety as well as sleep, on a dosage above the max, I take 900mg a day, plus on ambien cr, ativan, prozac, lamictal, indomethacin, oxycodone, zofran, and now my NL says she wants to put me on even more medication, I am SOOO DONE with meds, I hope they can help you better than they have helped me
The only time I’m in pain is when I have headaches, which is about 3-4 days a week, at the base of my skull.
My chief complaints are dizziness, nausea, vertigo, anxiety, panic, and an odd “lump in my throat” feeling, also tinnitus.
I’m reading a lot of people are getting the decompression surgery for immense shoulder and neck pain.
Does anyone have gastro issues? I have had stomach and digestion problems for over a year now.
I’ve lost 60 lbs. Wondering if from Chiari or stress.
I have seen a gastroenterologist for the issue.
I have had gastro issues but I have celiac disease as well so I don't think it's chiari related in my case. I think stress can do a number on your stomach and when you are in chronic discomfort stress is going to be high. :(
Headaches were not my primary symptom and I have still seen relief from surgery. (I'm one of those high pain tolerance braggers that Beeba mentions above, lol.) My main issues were fatigue, numbness and tingling, feeling lightheaded and dizzy, sensations of burning on my skin, and some neck and shoulder pain.
@anglyn How rough was your recovery? How much improvement have you seen?
Anglyn said:
I have had gastro issues but I have celiac disease as well so I don’t think it’s chiari related in my case. I think stress can do a number on your stomach and when you are in chronic discomfort stress is going to be high.
Headaches were not my primary symptom and I have still seen relief from surgery. (I’m one of those high pain tolerance braggers that Beeba mentions above, lol.) My main issues were fatigue, numbness and tingling, feeling lightheaded and dizzy, sensations of burning on my skin, and some neck and shoulder pain.
My recovery went very well. I had the surgery on a Monday. I got released the next day. Since I had to travel 5 hours for surgery I stayed in a hotel for a couple of nights just to be close to the doctor in case something happened. My pain was very manageable. I did get tired easily and had to take things slow but I was able to grab a few items at Target and walk around the hotel. I could get around just fine. You can't lift anything or bend over though so I was happy to take a pass on housework for a few weeks! :) I returned to work at 6 weeks.
So far I have only had a few headaches, my neck and shoulder feel better, I'm not getting lightheaded or dizzy, and I haven't had any heat sensations. I do have some numbness and tingling still but it's much reduced. My NS said that is usually the last symptom to improve and sometimes will not improve 100% due to potential lasting nerve damage. My energy is much improved. I can exercise again which is exciting. For years I could barely get through a work day and would have to go straight home to bed!
I am trying to figure if my period of unmanaged anxiety and stress has “caused” these symptoms. Surely they haven’t helped.
When I feel ill, I get bad anxiety. When I feel anxious, I feel ill.
What came first, the chicken or the egg?
I have an irrational fear of being ill so the thought of waking up from surgery sends my mind through a rabbit hole.
I know I sound like a looney but its the truth.
Funny thing is, my brother is an anesthetist … He puts people under for a living. I could just talk to him about what to expect when waking up.
My biggest fear is having a panic attack when waking up and not being able to mentally handle the physical symptoms of post operation.
I did fine waking up! I was in much less pain that I thought I would be. In fact the first thing I said was that brain surgery was way less painful than a tonsillectomy. lol. Call me crazy but I had my tonsils out 6 years ago and it was the worst agony I've ever experienced. Ever.
Wonder, my brother in law is also an anesthesiologist. You should talk to your brother, he really might be able to ease your mind about it. I think you would be pleasantly surprised by yourself, that you really may be able to handle much more than you think.
Just wanted to tell you a quick story. I’m not generally claustrophobic, so when getting my first MRI i didn’t think would phase me. Well, I guessed wrong because once I was in that machine I made the mistake of opening my eyes and it caused me to panic. I knew that if I paused the test I still would have to get back in there eventually, so I began praying to God to get me through this- give me strength. Suddenly I was struck by the strong smell of ocean water (the way the beach smells). It was so weird. Funny thing is, my favorite “poem” is the Footprints one where God says “that is where I was carrying you” at the end. (If you’re not familiar with it, google it- it’s a great one) Others may think me crazy but I think that was God’s way of reminding me that He was carrying me.
@wendy I had a closed MRI in 1995. I slept through it.
Another in 2001 - did fine (never had panic) until it hit me and it started to come over me like a flood. I immediately began to pray.
I made it through but that was the start to my panic attacks.
Open MRI in 2004 and 2006. Ativan got me through.
Large bore MRI last Thursday (Ativan and prayer). It wasn’t too bad.
I just don’t know that I have the mental capacity for MORE feelings of crappiness.
I know that once that panic comes on, my brain goes haywire and I’ll want to rip out my Iv’s like the Hulk and run through a window!
LOL, I hear you about the 'more feelings of crappiness' I guess you just have to take one day at a time and deal with all of this the best you can. I hope you can get some relief soon.
Wonder said:
@wendy I had a closed MRI in 1995. I slept through it.
Another in 2001 - did fine (never had panic) until it hit me and it started to come over me like a flood. I immediately began to pray. I made it through but that was the start to my panic attacks.
Open MRI in 2004 and 2006. Ativan got me through.
Large bore MRI last Thursday (Ativan and prayer). It wasn't too bad.
I just don't know that I have the mental capacity for MORE feelings of crappiness.
I know that once that panic comes on, my brain goes haywire and I'll want to rip out my Iv's like the Hulk and run through a window!
It deffinitely helps anxiety and helps with sleep, but it can leave you feeling very tired, other than that I have not had any side effects
Wonder said:
@robinlm did the seroquil work? Any side effects?
Robinlm said:
I know about mental health as well as dealing with medical problems, i am so frustrated that they keep putting me on more medication, I also take seroquel for anxiety as well as sleep, on a dosage above the max, I take 900mg a day, plus on ambien cr, ativan, prozac, lamictal, indomethacin, oxycodone, zofran, and now my NL says she wants to put me on even more medication, I am SOOO DONE with meds, I hope they can help you better than they have helped me
Post operative transsexual syndrome???? Sounds scary!
That's funny! I just wanted to butt in here and say that I think that the anxiety/depression can be a symptom of brain compression/Chiari. I haven't had surgery yet so I can't weigh in on it being better after surgery. But mine cycles just like my other symptoms. And it's not all about what's going on or worrying about my illness. When I have it (the anxiety)bad, I worry more about that stuff but it's not necessarily the reason for it.
I am still trying to get everything figured out and POTS is something I am looking into at the moment, so maybe that has something to do with mine too. I don't know. There seems to be a never ending list of things all related to Chiari that needs to be looked at. Sometimes I just want to get in my bed and hide under the covers and never come back out. Others have said it but I'll just repeat (and I have to keep reminding myself too) the ones who have had a successful surgery have likely forgotten about the support forums because they no longer need it. The ones that have problems still are the ones you hear about most because they are still looking for help.
Most, if not all of my symptoms deal with my vestibular functions. Dizzy. Nausea. Light headed. Queasy. Nystagmus. Etc.
That’s why I’m nervous about the surgery … To have those get worse is a great fear.
I feel like I could deal with pain. But with feelings of “not being here” or “dreaming” or not “normal” give me heavy anxiety.
That’s why I never drink or have done drugs. I don’t like feeling not in control.
Sincerely,
Scare D Cat.
Ps, not to mention I have a brother who’s a pilot and another who does brain surgeries and survived a brain tumor himself … I feel like a large failure in my battle with my mental capacities.
Lol @ wonder!! See you’re gonna be just fine lol. I know we’re just discussing but don’t y’all think all our anxiety and being on the edge is because we always have a freakin headache and crick in our neck??? Just sayin
Well … My anxiety I can trace back to when I was young.
But really began when I was in my early twenties … Doing stupid things that I knew weren’t right … Thus creating years of stress.
The vertigo and dizzy and nausea definitely trigger my panic attacks. Or is it the other way around?
Sometimes I’d like to just ask for another body and mind and see if God allows it!? Maybe 6’3". Chiseled. Full head of hair. Perfect health!
That’d be nice!
@ Brandi, sometimes my depression feelings are because this is gonna be my life now and feeling bad and situational things. But when I have bad anxiety it can just hit me out of nowhere and be gone again the next day (or even later the same day) just like my neck pain or whatever else I'm having. There's no reason for it and it causes a lot of fears and junk that are irrational and I know they are, but I cant think my way out of it. Maybe everyone's anxiety isn't caused by the brain compression, I just think that a lot of mine is and I know that almost everyone I've heard of with Chiari has it.
Lol uhhhh yea, it’s very natural when I get dizzy I get super anxious I’m not in control of my own body and it sucks. Who wants to walk around looking at the ground because your world spins now. People don’t get it and it causes anxiety. I think that’s natural. So we deal with it. How we all deal with it is different I’m extremely practical, so yep I’m dizzy so I’m going to figure it out, my outlet is I go off by myself somewhere at some later point and cry. Shower, room, car but until I’m alone I act like its no biggie. Just because I have a husband and three children that is living with this also and their lives have changed so much, so if I can do just a few things to keep that freakin worried look off their faces I’m doing it so a lot of what I do is for them and it keeps me going. But I’ve realized I hold every moment more precious now because if I lay in bed and waste away what was any of it for? So I take my pain pills get my arse up and do what I’m supposed to do. That is me personally that’s how I’m surviving. You have to find your own way, but do it for you and people who love you.
Anxiety drives us all insane and makes the depression worse. When we get the run arounds by those who are licensed to help we feel worse cause it seems like there’s no way out. I’m looking at surgery as a positive. Am I scared? Yes. As a mother of two I am scared of not seeing them grow up but I am missing out on that now. Surgery next week and I’m ready to get my life back even just a little.
