Worst week of my life!

After being diagnosed with Chiari about exactly a month ago, I went through my real first rough week. I wasn't able to sleep for 3 days because of the excruciating headaches and vomiting and finally ended up in the emergency room with a heart rate of 39 on Wednesday. I was literally there for 9 hours and nothing they gave me was helping. Finally they gradually increased the different types of pain meds until I was finally numb. Is anyone else going though this. Any tips of how I can deal with it without having to go through emergency. They prescribed Tramadol and some nausea meds, none of which seemed to helpo me at all.

Keep me in your prayers!!!

I'm sorry you've had such a rough week. Sadly not a lot seems to help a chiari headache. Some people find a diet that lowers inflammation to be helpful for symptoms. Look into paleo or Dr. Weil's anti-inflammatory diet.


Just throwing this out to you....have you ever tried ginger for the nausea?? I use it and it really does help....For the head ache I take Fiorocet...I have to take it as soon as I feel the h/a coming on....this med helps me quite a bit.

I have take Tramadol as well in the past and did not find it helpful.

Let us know how you are doing. So sorry you feel so lousy.

They didn't seem to be too concerned with the heart rate. They said it was either because of the medication or what they call tensing up or something like that. I am feeling much better today but still a little out of it. They did an EKG and monitored me in ICU emergency for 9 hours. I am not currently monitoring anything at this point. Do you think that I should?

I will also try Fiorocet and ginger in the future. Thanks for the suggestion.

Hi There...

Just wondering if you have spoken or seen your doc and also hoping this week is better for you..Please keep us posted on how things are going, ok???

I spoke to the doc. The only question is whether or when to have the surgery. I am feeling so much better this week. Just a little or a lot tired I guess. Maybe a little depressed too :). For those of you who did the surgery, what process did you go through when selecting whether to do it or not?

I still swear by propranolol. I went throught the same exact thing. killer migraines, & sweaty/fainty/nausea episodes that landed me in the er with no answers or help. I tried every migriane medicine. none worked & a few made them worse.. propranolol ( generic for inderall) is actually a blood pressure medicine. I was scared to take it at first because i already had low blood pressure. they gave me the lowest dose. U take it every day as a preventitave. after a few weeks my migraines turned into headaches ( which was so much better). after a few months the headaches started to go away. propranolol is a very benign medication with practically no side effects. I just actually learned that it is NOT a coincidence that those fainty episodes mostly went away after i started propranolol. It is really worth asking your doctor about it, it changed the quality of my life. good luck

Basically I was told that I wouldn't get better without surgery. I would get worse but probably not to the point where I'd become paralyzed or die. If I decided against surgery we would monitor with CINE MRI every 6 months just to be sure no serious complications were forming. To me it was a quality of life issue. I was miserable, in bed all the time, barely able to make it through a day. I knew I was taking a chance on not getting any better or even feeling worse after surgery, but I was also taking a chance on feeling better. I decided to go for it. I think it's important to accept that surgery is a treatment and not a cure. Approximately 80% of people see improvement post-op. In my case, so far so good. I'm 7 months out and I feel really good. I'm not 100% but I'm much better than before!

rebekahraer said:

I spoke to the doc. The only question is whether or when to have the surgery. I am feeling so much better this week. Just a little or a lot tired I guess. Maybe a little depressed too :). For those of you who did the surgery, what process did you go through when selecting whether to do it or not?

I will definitely look into propranolol. I had never hear of it. I need to go and pick up Topomax it use to help with the cluster migraines but now I am wondering if they were brought on by Chiari.

Thanks Anglyn for your response too. I keep hoping it will just magically disappear just like it magically appeared. Maybe if I push the surgery out long enough, my symptoms will get better. I know it's probably a lost cause, but prayers have worked miracles in the past. It's hard to stay positive with the decision on my surgery lingering in the near future. I am thinking about doing it at the end of November. My biggest fear is I have the surgery and it gets worse.

I hope everyone else is doing ok.

I amon the same page. I am so scared of the surgery. I am trying to manage my symptoms, but is getting harder to get through a day. Am still trying to find an NS in the meantime, just in case, but I havnt been able to find 1 i feel good about & my insurance isnt widely accepted

The last thing you should have to worry about is money and insurance...Ugh. When were you diagnosed? Have the symptoms gotten worse? How long did it take from the time you were diagnosed? Sorry to be so nosy. I am dying for information from those who have already gone through this waiting period.

I was diagnosed in march. about 10 years ago i got every test/scan/etc. done for my migraines & everyone agrees that it should have been caught then. my syrynx is way more than halfway down my spine, it has been there for a long time. My symptoms came on suddenly & hard. I woke up 1 morning & thought i had badly pinched a nerve, which is easy to believe because i sleep twisted. My left side neck shoulder & arm were in severe pain & my skin was hyper sensitive to temperature, warm or cold. My symptoms have gotten a little worse, but I have been taking lyrica to help. Was gonna stop taking it because it wasnt helping, but my pain management doc suggested we up the dose before i quit, & that has helped a little so far. (its only been a week or so). I also have to resort to percocet at night, or I would get no sleep. The pain is so much worse at night. Probably doesnt help that I refuse to stop working ( I bartend & serve, physical stuff). Just went to new NS today. No luck. He is the chief of neurosurgery at LIJ, but refferred me back to the chiari institute where I already saw someone.The lawsuits there creep me out, but I am running out of options, & will probably meet with 1 who wasnt there for the lawsuits. ugg. I had gotten 2 conflicting consults before today.He asked why I met with him. He mostlygave same opinion as the guy from the institute & raved about them, but they are affiliated with his hospital. He did say that I am under no time pressure, unlike the 1 from the institute, who said I have a month or 2, & from talking to people here who waited too long, I question that

May I ask what area you are from? I ask everyone because I am having such a hard time finding an NS

I was prescribed Tramadol and finally just had to email my PCP that NOTHING was working for my pain. She then prescribed me hydrocodone 7.5’s and though they did not take away my pain totally, they did help me rest. My PCP is who found the Chiari by MRI, so she knew all that I had been going through for years. If you have a physician that knows you and what you’ve been experiencing, as well as your diagnosis, I think they are willing to do a little more.

Same here. The hydrocodone takes enough edge off so I can sleep a little. The Lyrica is starting to help a little also, now that they upped the dose.

I am from the Bay Area. California. I love my NS he was so thorough and knowledgable. I actually saw two and immediately liked both. But they are Kaiser Docs which is kind of specific.

Jessica. I am so sorry to hear that :(. My mom has always dealt with FM and everyone always treated her like she was crazy because she wasn’t bleeding from the head? I think that’s how some of the ns act.

FM?is that fybromyalgia? I dont have that, I take the lyrica to help with the nerve pain from the chiari. But I can relate to what your mom went through. Sorry to hear about that