I’m So frustrated, I’ve been through so many doctors appointments since all my problems started back in 2010. I had surgery in 2011 and my problems got better for maybe 3 months then all came back. I’ve been put on so many different meds and passed off to different doctors for both my chiari and my tachycardia. I’m tired of being in pain all the time, I’m also having trouble understanding people when there talking to me. Like I know what the words are but my brain isn’t processing them to understand the convo (does this happen to anyone else?) and it makes me feel stupid. I just want to be better! I’m only 25 I want to live a normal life again! Even tho I have all of y’all here I still feel so alone in my pain. 
Vent over.
Hi..
So sorry that you are feeling this way...it is just awful!! I know, 1st hand , that feeling so alone with my pain..heartbreaking, really.
I thank you for sharing your true feelings..it helps others, ya know..to feel as though they are not the only ones..
A question for ya..have you had a recent brain MRI???
By any chance are you taking Topamax for head aches?? I ask this because I took it a while back and had such nasty side effects....This drug is referred to as DOPE-A-MAX! I felt like I was a complete idiot while taking it...could not process a single thought...along with other side effects...so, I thought I would ask you about it...since you are having issues with processing.
Please keep us posted.
Rosey, I have the same processing problem- I have to put the words together like a puzzle before I comprehend (I just try really hard not to have a blank look on my face while I’m processing)…it’s NOT confidence inspiring! So, I agree with Lori, time for a MRI and should take a serious look at POTS and cervical or cranio cervical instability from EDS. Many good decompressions fail to relieve symptoms because of the neck and head instabilities, and the POTS needs intervention too (cardiologist). Nobody wants to start the long and tumultuous process again, but my feeling about it is get fixed what needs fixing so you can feel as good as possible. May not be “normal” again but get as close as possible! I’m sorry your feeling so down, but you are not alone ms Rosey.
Jenn
Thank you ladies. And I was on Topamax a few months back but no long taking in. My cardiologist has mentioned POTS even told me to look it up online to see if I have the symptoms (which seemed stechy to me) but he never diagnosed me with it. And my last MRI was done a year ago. I’m also having trouble with my neurologist where it’s like we’ve hit a dead end. And I get the whole “idk what else to do for you” so I really need to find some new doctors. And start this whole journey over again. ); I wish the doctors would understand the amount of pain we are in!!
Rosey,
Have you seen a pain Mgmt Specialist I understand your pain, frustration & tachycardia. Most Chiarians don't have much luck with NL. Ask them for a referral to a pain mgmt specialist. They are better trained & incredible diagnosticians. I feel lot better since I was diagnosed, by a Cardiac Electrophysiologist, and started treatment & lifestyle changes for POTS. I still get POTS days but haven't fallen or passed out but maybe a couple of times & I had broken many bones & had 4 closed concussions from what I thought was just falling and it was from POTS all along. Sensory overload was also a major symptom. Try to keep your sodium levels up & stay hydrated. Get up slowly and if you feel dizzy please sit back down.
Please know you can always vent here . We really do understand.
I will def look into a pain mgmt specialist!! im having problems with passing out as well. thankfully i always having someone around me and have been caught before i hit the ground.
Find a good Chiari specialist! I recommend Dr. Oro in Denver, he is one of the top in this field. I did and I am so glad. Walking into an office where they see people like us all day is amazing! They had no doubt about the symptoms I reported, they never told me I had anxiety or depression, and they gave me the validation I needed. They also ran additional tests I already knew in my mind I needed. They also recommended 3 surgeries which 5 years and 3 states of doctors had overlooked.
Push on… find a Dr who believes you and whose opinion you trust… and most of all never let anyone tell you there is nothing they can do. There are so many options for minimizing symptoms. Hang in there!
I feel the same way. I was diagnosed in 2003 didn’t have surgery in 2006. I too felt better at first then it all came back. I have been through so many surgeries and procedures I feel like a lab rat. I have been through all kinds of meds. I had a VP shunt put in and it didn’t help. I too am tired. I don’t know how long I can do this. I am so sorry you are struggling! It is nice for me to know someone else understands too. I will pray for you! I was in my twenties too when I was diagnosed. I pray your journey is easier!
Hi
I do understand what you are going through I have the same things pain is so terrible and I am so frustrated with the way I have to live now. I am on 6 different med. I had 3 mri in September and I cant get in to the dr to go over them until November 19 these days I just don't no what to do and I understand the way you feel cause I feel stupid all the time this chiari has taking a toll on my life I had the surgery jan of 2012. I hope you get to feeling better
Pain can be a huge source of tachycardia-. My BP (top number) has been 100 and gets up to 148 in pain- once my pain is managed it subsides. Pain is now considered one of the main "vital signs" for a reason- left untreated, it can can be dangerous. I am so tired of doctors who are too scared to prescribe pain meds, yet the end result of not managing pain can be by far more dangerous than the pills themselves.
I have pituitary gland issues- I thought my head was going to explode last night- never have I experienced a head ache like that Processed food can cause it- and sure enough, I was on the run and grabbed fast food and paid for it dearly last night. I hear vit c is helpful- Seeing a neuro-endicronologist soon. Have you had your gland functions checked?
Sorry you are suffering- :(
POTS!!!! I only just figured that out for myself days ago & my neurologist didnt really give me any info like I thought he would. I had the same symptoms & no answers for well over 10 years but the sweaty / nausea/ fainty spells went away when i was prescribed propranolol to prevent migraines. It turns out that that is what is prescribed for POTS!!(beta blockers) I bet you have a low heart rate??
Rosey said:
I will def look into a pain mgmt specialist!! im having problems with passing out as well. thankfully i always having someone around me and have been caught before i hit the ground.
Don’t give up it took me 27 yrs. to get help,I never gave up.It was so horrible to live in sickness for so long. My surgery is 1 yr. out and though so many things have gotten better,there is still symptoms that are from dysautonomia but I have not received any treatment yet.I still have head aches,sweats,pain and coldness in my feet,lots of head noise too.The conversation problems are very frustrating I have trouble with focus and speaking at times,it is so embarrassing,but it seems to be something that happens to so many.I am very glad to get the improvements that has come after the surgery and hoping that there will still be more to come.The NS says it may take two or even more yrs.to know what will change.This is certainly a long road to healing,the brain is different than any other body part,it is up and down.What did your surgery consist of? Did you have the duraplasty? This is my opinion and I have noticed a lot of others here on this site,that it is very important that you see a chiari specialist it is the key to success.Hope you find answers soon.
Areyou workin? I am 30 and had surgey butnever felt better- so i stuck it out for 8 months, before i copied a friend and went to acupuncture!!! It has been theonly thing that treats theway i feel. I was able to go camping in july. I go to acupuncture as often as 3 x a month. I HAVE to go. I get my scalp and scar and tailbone. It makes the blood flow corectly. What some of our problems are is a lack of blood flow around the head and neck because the muscles are over worked and tight. Plus scar. If you try it go a few times so your body can begin to balance. It took a five treatments b4 i really felt it working
I wish i could give you all a big hug for helping me not feel alone and also going through this tough journey as well. Kyle, no I'm not working, i was put on disability last year thank goodness! and acupuncture freaks me out!! even tho I've had my head cut on there something about acupuncture *shivers* but i may end up giving it a shot. I'm in so much pain and desperate for SOME relief. I'm going to my neurologist on Tuesday and talk to him, my hands and face have been going numb more often, the head pains are killer, and the not being to understand words is really getting to me. So ill ask him to order a MRI and also talk to him about cranio cervical instability,and about referring me to a pain management specialists. so my fingers are crossed ill make some progress somewhere.
Update: I went to my NL today was told i have chronic pain (of course) and he didnt know what else he could do. I did ask about the cranio cervical instability but he didnt really put any thought into it and said "well your mri report from last year didnt say anything so i dont think you have to worry about that." and i asked could I get another MRI to make sure everything is still ok, he told me i didnt need one :/ But he did refer me to a pain management specialist so hopefully i cant get some type of relief this route.
Sometimes you have to be pretty pushy to get what you need. If you believe you need another MRI you probably do. You could call the MRI office and ask then if they can review your scan again for anything that might not have been mentioned. Often times the scans are run by “scouts” which are a computer program. If the scout wasn’t set to look at other areas in the MRI things can be easily missed.
Have you ever read your reports from your scans? I do and boy did I get an education! So much gets lost in translation from the tech who does the MRI to Dr. who reads the mri and then the Dr. who finally talks to you…
Rosey, if you want to pursue it I think you’ll need to get in touch with an NS who specializes in chiari. The NL told you nothing came up on your MRI for instability, but if it wasn’t a flex/ext MRI it most likely wouldn’t show it. These guys just don’t know what Chiari and related disorders are. So frustrating. But anyway I’m guessing that your MRI came back as normal? No flow blockage or herniation? Keep hanging in there.
what is a flex/ext mri
Its an MRI where they image with you head in forward and back tilted position. I’ve personally not had this done. I have had the flex extension x rays.
Rosey,
I agree with others that you should get to a Chiari specialist. I have found that many really good Drs just don’t understand this condition. A specialist can make a big difference. Also, give the acupuncture a try. My husband passes out at the sight of needles but he has had acupuncture for other pain and it worked. The needles are very small and do not hurt.