I was diagnosed last week, after a year of mild symptoms. Luckily I was able to find a NS less than an hr away that can see me in one week! He’s at a neuroscience institute in Houston and treats many Chiari patients. His receptionist told me after I asked that he does do a watch and wait approach and will treat the symptoms medicinally if he feels you aren’t in need of surgery. He also runs his own tests and scans. I feel like there is hope. But for the past few days I’ve had some bad anxiety and emotional breakdowns. Causing my chest to feel tight, causing me to be afraid to go to sleep thinking I’ll die in my sleep or something bad will happen. But I read that Chiari is rarely fatal. Is this true?
Hi , I am new here also..
I've even had dreams so stressful they've woken me up.. What I've read and spoken to my Dr about really helped me during very emotional days.. I was told when the pressure or even fluid builds up it can cause all types of problems. I've had drentching sweats and my heart beating out of my chest..
My Pituitary glad is flattend right now and it can cause all types of problems. I've also read that many people are misdiagnosed with depression , anxiety or even bipolar!
When I am having those feelings I try and stop and tell myself it's my Chiaries and it will pass. It seems to help once you can recognize it and try to relax.
Hope this is a little helpful, I'm having my Surgery Aug,13Th and found even when I am a sleep my brain is still stressing about all the things I need to do and what the surgery is going to be like!
Best of Luck,
DM
Retromommy,
It can be very overwhelming when you first get the diagnosis. Everyone has similiar symptoms but how many you have and the severity of the symptoms varies greatly. I have a terrible time sleeping and I worry alot too. I am afraid many nights to fall asleep because my insomnia is so bad. i just lay there and toss and turn. Chiari does cause insomnia and then if you don't sleep everything feels worse. Chiari isn't fatal. You aren't going to die in your sleep from Chiari. I am sorry you are feeling so much anxiety. We are all here for you just breath and take it one day at a time. ......Wendy
I have thought about taking a valium on my bad nights. I just went to the hospital yesterday morning for some really awful arrythmias I was having. It was horrible. My whole chest felt tight and I literally felt like if I slept I would stop breathing, so I didn't sleep for about 36 hours! Of course the hospital gives me a tranquilizer which helped with the pain, but wow. That tranquilizer only made my Chiari head symptoms wayyyyy worse.
Retromommy,
I am so sorry you are going through this. Sometimes the ER can be an awful experience for us. I use a natural remedy for anxiety called Rescue Remedy it's a Flower Essence. I know it sounds loopy but it really takes the edge off for me most times. It's taken sublingually and only a few drops a few times a day. It doesn't take anxiety away but it take the edge off. I would be excited about the doctor you found it sounds like he's a good one. You can also get a second opinion if it doesn't work out with him. I usually Google the doctors name with Chiari in the search to see if anyone has posted personal experiences with the doctor. We are all here for you and completely understand what you are going through. Let us know how you make out.
Wendy
Retromommy2 said:
I have thought about taking a valium on my bad nights. I just went to the hospital yesterday morning for some really awful arrythmias I was having. It was horrible. My whole chest felt tight and I literally felt like if I slept I would stop breathing, so I didn't sleep for about 36 hours! Of course the hospital gives me a tranquilizer which helped with the pain, but wow. That tranquilizer only made my Chiari head symptoms wayyyyy worse.
Dear Retro,
I am brand new to this site but I see a lot of symptoms we have in common.. Also the treatment I've gotten at the ER, My PCP and a NS.
My PCP actually dismissed me! Her nurse called and said we've done all we can do I needed to seek help else where... Come back if I have a cold or flu???
I too have had very scary event's with my heart, I was told depression, anxiety , dehydrated anything else but my heart!!
I can be a sleep and wake up totally soaking wet, my heart was beating so hard and fast my shirt was going up and down? I have a terrible family history with heart disease and I thought for sure It was my turn!
My father passed at 48 after having several surgeries to repair arteries , when it couldn't be fixed they would then amputate , both of his brother's passed from the same diseases and my grandfather. My brother was 32 was very overweight and had a major heart attack walking home from the store at 32 , my mother passed with diabetes and heart problems at 52..
I heard time and time again you're to young, It's probably from your med ( I had a surgery for something else in 2006) they cut my diaphragm , cut nerves and I have a chicken wing for a scapula..and chronic pain ever sense.
It's so terrifying when you're having an attack like that I soo understand , I remember a few yrs back on the 4Th of July having a full on attack, I had to send my son with someone and just laid very still praying I'd make it through the night! I told myself if I made it through the night I would go to ER in the Morning so I wouldn't spoil the 4Th for my son.
IT took 5 visits to the ER before they figured out not only was I having all the heart issues going on but I had Pancreatitis and my Gallbladder was swollen.. Finally someone got it..
I guess I'm trying to say I really understand the fear and frustration and being judged by Dr's but it's your body and you know it best! If you know something is not right don't let them bully you into what they think!! I live in a small town in the Rockies about 4 hrs to Denver. I started doing my own research and found Specialist down there who've been a tremendous help. I was eventually referred to DR ORO ... He explained to me that my Pituitary gland was getting squashed and laying on it's side also my Endocrine system wasn't working well! They also found 13.5 dozen white matter lesions that are usually associated with MS, Lupus, Vascular or Strokes! Then he went over my tests and compared my brain and cervical area to a person that was healthy it was the size of a drinking straw ... Then mine , that same area between your spine and brain was about the size of a toothpick....and it had gone from 4.4 mm to 7mm!
Everything started making more sense at that point, The vision problems, memory, speech, low blood pressure , fatigue. and top of the list was my heart.
Have you watched any of the lectures or read other patients stories csfinfo.org ? That is where I learned so much about some of the symptoms that aren't as common.. The best Dr's different diseases that go along with Chiaries , this is a wonderful site and everyone is very supportive and helpful..
I'm sorry this became a small novel but when your post came through last night I only had my cell and couldn't write you :( Your story hit so close to mine the fear and doctor's turning me away I just had to write you!
I've gone forward and finally scheduled surgery for the 13Th of August, if I said I wasn't scared I'd be lying! I am a single Mom of 5 great kids but only 1 is still at home and he starts High School in August.. He has Dyslexia and Dysgraphia and it's a constant battle here to get the services he needs. I'm praying by getting this done soon I'll be into my recovery period before any big meetings he may have.. My other Children are grown and spread out in different States , it's been he and I for a long time.. I want to be the mother I used to be and be able to get down and play with my grand kids..
I figure I may never be the same but I am so hopeful I will be better and stop the progress of this condition!
Prayer's are with you , hope I don't offend anyone by saying that but it's what gets me through:)
Best wishes, Hope to hear from you too,
Deb
P.S. please forgive grammar and writing error's ,it's like my speech at times I know what I want to say but sometimes comes out jumbled or not at all...