So I just want to let you know I to suffer from mental health issues I think its a lot to do with the chemical side of things.I see a phycologist and am currently being refered to a phyciatrist for disassociation its interesting that somebody else who has chiari is experiencing this.I have been decompressed aswell but struggle with depression ocd and anger outbursts that are managed with (fluoxetine) Im not saying that this is the drug for you but if your running out of options maybe talk to your doctor,nuero cause as a chiari patient it really! helped calm things down.I can focus more and rationalise things easier.I understand the struggle as I am having one of those days today which is probably why im on the chiari support page right now haha.If just feel very strange and fatigued always happens around mid week cause I push my self Mondays and Tuesdays and then by Wednesday bam!!! down and out or struggling to hold my head up or feel motivated or enthusiastic about anything.It helps me to keep and short goals list and self care aswell.I often get worried about becoming dependant on a certain drug but honestly I donāt feel I could function without it.I tried natural alternatives but its chemical.I hope things get easier take care.
Brainsurgerychick,
Iāve started taking lamictal for the irritability. Interesting to see some one else with this condition has dissociation, indeed!
Now! I have an update since Iāve seen my NS today. He was very knowledgeable and competent! I didnāt expect it but he was great! He said that my numbness Iāve recently started experiencing is most likely from my chiari as well as my sore joints and muscles, and the feeling of blood pooling. He said he wouldnāt really attribute my dissociation to the chiari but because chiari is such a bizarre condition that has symptoms that vary from person to person, it is possible. All of my unexplained symptoms could be due to my chiari but itās hard to be certain until you have surgery and if thereās a difference afterwards. He referred to chiari as a āboxā of symptoms which made me think of Pandoraās box lol. Chiari can be chaos.
So, since my chiari is both symptomatic and quite large, he thinks I may need surgery. Iām going to get two MRIs and two x-rays on August 9th and will have a follow up with him on August 13th and he said heās 90% certain heās going to recommend the surgery.
Oh yes it is bizarre I find myself constantly wondering hmmm is this a chiari symptom or something else?.Good luck with your surgery I found a lot! of relief from my op also invest in a really good pair of earplugs sleeping in a hospital is like near impossible unless your drugged a lot haha!.I honestly donāt think I knew what I was in for it is a bit like Pandoraās box.It feels surreal sometimes like nah! a 24 year old cant possibly have that many symptoms or feel this exhausted.I hope your surgery goes well for you.I think a lot of the time its difficult to explain that āweird feelingā to doctors its one of those things you got to experience to understand.I think my disassociation has a lot to do with other traumas in my life but I think what might have happened is that chiari has forced me to slow down in a way that before I got really sick I wouldnāt have.I would usually distract myself with work etc and because I get to the point were I cannot function properly I spend a lot of time on my own and come face to face with my own thoughts which are scary! I think thatās were the disassociation comes in.But its hard to tell whether its actually disassociation or zombie brain like cause of my brain surgery and disease.I think that may seem to phycologist or physiatrist to be the most logical explanation but sometimes it could be a lot deeper than that its just being missed.If you have āāNetflixāā were you live or āāgoogle itāā watch (BRAIN ON FIRE) I found it very interesting and educational and it opened my eyes to what was going on with me.Take care.And hopefully your surgery brings you some relief 
Iāve had traumas too that I think could contribute to the dissociation but it is so hard to tell! Itās just such a weird feeling. Thanks for the advice on the earplugs and that Netflix recommendation! Iāll have to check that show out.
OHH WOW!!! This is what I really like and appreciate about Benās Friends, like āPHEW, itās not just meā.
Many, many years ago I was placed in a psych ward due to some odd things that were occurring that no dr could find a cause nor diagnosis for 'ā¦to be having sensations like that you must be crazyā¦ ā¦itās hypochondria ā I was told. After that experience I decided to simply ignore symptoms. Fast forward a few years of ignoring things and my ignorance all caught up with me and I ended up needing major neurosurgery. I was asked āwhy didnāt you act sooner?ā ābecause of the judgements that had been made beforeā why would somebody speak up when the (so called) professionals say thereās nothing wrong and itās all psychological. Keeping my mouth shut was a self preservation ploy or so I thought. The reality was quite the opposite. But even with a confirmed diagnosis I still get āohh thereās nothing wrongā from the drās today. I find this confusing, aggravating and disappointing to say the least. Some people say I have no reason to be frustrated with the medicos, but in my opinion, I do.
So now, I manage for me. If I think thereās an issue, I act. I have symptoms EVERY day. The symptoms I know I manage, the ones I donāt know or are new I write down and speak to my pcp. If I see or feel a progression of symptoms, thatās a sign thereās a bigger issue, and something is wrong then I act.
For myself, once I was given a label of āa mental health issueā it followed me everywhere. Even today, over 25yrs since the mental health diagnosis it still pops up as āA history of mental health issuesā from time to time in my health records. I strongly believe itās one of those āWhich came first, the chicken or the egg?ā sort of questions. Was it my brain injury that caused the mental health issues or was the mental health issue already there? And every headshrink, dr and druid has a differing opinion. I have found I have to manage all of this for me, not them and their theories.
Merl from the Moderator Support Team
Oh my lord!!! I just had a lightbulb moment thankyou! thankyou! thankyou!.I have dealt with docs and honestly I feel frustrated mostly cause they all talk at me like they have a clue how this feels and they donāt.I am in the process of being refered to a phyciatrist for what the phycologist believes to be bipolar hmmmm.I still to this day have hypersensitivity where everything and anything sets me of I feel irrated and uncomfortable like sensory overload with to much noise and not enough quiet that only started happening real bad after my op and now its not easing at all.My theory is I go to the neuro who cost $450 a visit to tell me hmmm its not severe enough so I figured ok then! I will put up with it till it gets so severe that I gotta go to the ER and then you might actually take me seriously.I find nuero visits to be a complete waste of time to be honest Its frustrating and disheartening I just have to cope the best I can a nd keep my money 
but yeah it would be nice occasionally if they would asses your mind and body as a whole thing like it is instead of placing you in the āhypochondriacā āmental healthā category.I hate labels as they marginalise people.And honestly chiari seems to have no margins its crazy how a nuerological issue can effect other organs not to mention that weird dura patch thingy getting all fused to your brain how is that ānormalā I mean no wonder people donāt feel right.Honestly makes me so upset when people donāt understand how much I struggle daily cause of this and its not cause I am mentally unwell but it is because I also have a disease that wears me out and causes āsymptomatic depressionā I mean honestly anyone who doesnāt get depressed because your scull is giving birth to your brain isnāt human it hurts like hell and effects everything from your sleeping,breathing,balance,coordination its hard to function when you feel drunk all the time or like you have litrally been smacked in the head.I have learnt a whole new meaning of fear because of chiari im not invincible and I worked that out because of chiari.Sometimes its easy to work through other times it feels like someone has given you a massive poo sandwhich and thatās your only option and the person that gave it to you is looking at you with judgment because you donāt like the poo sandwhich and you can see whats wrong with it and refuse to eat it.Its easy for a doc to dismiss you because they havenāt experienced that poo sandwhich haha! they donāt know what it feels like just what there education has taught them which is limited to there perception.They just donāt know until it happens to them.
EXACTLY!!!
You say āā¦they havenāt experienced that poo sandwhich haha!..ā but, sorry to say, there is no haha about it. Their textbooks are a set curriculum but this is far from set and itās very frustrating and disappointing that they point at psych rather than a lack of that curriculum. In my opinion itās partially a safety thing for their own egos too. Rather than admit the shortcomings of their knowledge. I completely understand that we go to drās for information, we go to them to utilize their knowledge. BUT rather than admit when they donāt know they are very quick to blame the patient, to say this is frustrating is a huge understatement and if you are not depressed at the start of the process, without the answers you are seeking, you sure are at the end of it all. This is why people go outside of the medical fraternity to find answers AND then the drās have the gall to pass judgement when we look elsewhere. Grrrrr.
So why are you frustrated??? Why are you depressed???
Because the people who society says have all the answersā¦ ā¦have no answers.
It is only the people who have been here who will ever comprehend this fact.
So, why is it that you feel frustrated? (Rhetorical question BTW)
Merl from the Moderator Support Team
Hi, I have found many doctors do not have the full picture or understanding and so they will missdiagnose problems. Chiari trauma causes the brain to react in protection and the chemicals work overtime. Having emotional problems thanks to Chiari is very real and to be expected. Suffering from sensory overload as a Chiarian is normal. Your brain is under constant trauma, causing constant tiredness. As the chemicals are working overtime they do go out of balance. You could experience depression, feel emotionally cold, find yourself at times disassociate emotionally etc. You need to discuss with your neuro or gp getting meds to help your brain chemicals such as Lamicton and Adco-Mirteron or Remeron. These meds help balance brain chemicals and help prevent depression in doing so. You also need to be very kind to yourself and allow yourself quiet time when your brain is tired of listening, hearing noise, having to talk too much etc. I personally also have had a probem with all of these problems and use the medicines mentioned. It has brought huge relief. When my head feels tired I make sure I do something I enjoy, relax and stay out of huge conversations. Find what works for you. Make sure the people around you understand you get tired inside you brain/head and will need to have calmness around you.
I know itās been a while since people have been on here but I suffer from heat intolerance (really bad) in the winter I sleep with a window open on me cuz Iām so hot. I have muscle issues in my calves which Iām currently going to get another emg done at a bigger hospital. I have trouble talking cuz it becomes slurred at times & I have trouble finding words (itās horrible & embarrassing). When lying down I have scary heart palpitations but every time I wear a heart monitor weirdly it never happens so I just deal at this point. my neck & shoulders hurt constantly. I have occipital neuralgia so on top of chiari head pain theres that which is debilitating at times where I cant even move. Iāve just recently started with small tremors. Iām in pain all the time & Iām on a pain med & topical compound cream & this helps me get through day to day but sometimes it doesnt help at all. One day I hope we can all get together to talk cuz Iāve never felt so alone. I pray you find the answers & help your looking for.
Hi! I understand that feeling of isolation. I grew up being the only one in my life with any sort of chronic illness. Iāve found solace in forums like these. I have had the surgery since this post. I got it last year on January 10th. Headaches are far less frequent and much more manageable. Iām not getting muscle cramps anymore. Iām much more tolerant of the heat. If anything, I get more cold now lol. Of course, there are still times when I canāt be out in the heat but last summer was the first times in years that I could actually go outside at all. The heart palpitations I have, havenāt really improved much but Iāve found that increasing my sodium intake(dysautonomia) and doing recumbent exercises really helps. Things like lying on your back and doing pedaling motions with your legs or doing leg lifts. You can also use resistance bands for your arms. I did a holter monitor one time and nothing happened. The cardiologist didnāt really seem to take me seriously eitherš my speech still gets slurred and I have a difficult time swallowing but they may be to do with a separate illness that I have. I wish we could get together, too. It would be nice to have a good support group. Hang in there! Thereās plenty of us out there and weāre here to help!
Oh! Another tip for heat intolerance is popsicles or slushes. If you start eating one while in the a/c and then go outside, the heat is far more tolerable!
How was your recovery after the surgery? Iām so scared of getting the surgery but my symptoms are getting worse.
Recovery actually wasnāt so bad. I had a really good surgeon though. I was in ICU for monitoring for a few days after and then went into recovery for about four days. I did get a terrible headache about a month later, though. Lasted a weekš Since Iām on Medicaid, it took a while before I could get physical therapy afterwards. Months, really. But the physical therapy really helped me. Iām still doing the exercises and it really helps loosen up tight muscles and relaxes me.
Do you think the surgery was worth it? Iām 41 & I have 3 kids. My chiari is 1.4cm every neurosurgeon says itās bad but say itās still my choice for surgery cuz I dont have the cyst. my symptoms recently have just started getting worse & I was diagnosed about 3 yrs ago but can remember symptoms going back many moons ago. Iām scared & I just dont know what to do.
I think it was worth it. Mine was 18mm(1.8cm). The surgery took six hours and I was pretty out of it for the time I was in the ICU. I didnāt have the cyst either but because the herniation was so long, it really impacted me. I was more afraid of what would happen if I didnāt get the surgery than I was of going through with it. It helped that I had a very experienced surgeon.
Yes these are all from Chiari. I have hone as far to tell my doctor i feel like i have early onset dementia, it gets that bad.
Hi, new to this forum and diagnosed Chiari Type 1 last month after an ER visit (they thought I was having a stroke due to balance and vision issues and pressure on the left side of my body). Tonsillar ectopia ranging from 13mm-22mm depending on the scan. MRIs are done and waiting for surgeon appointment next week. Mental health and psychological symptoms is a HUGE topic Iāve been looking for on the forum so thank you for posting all those years ago! I am 33 and have been āstruggling with mental health issuesā for over a decade. I put it in quotes now because now I donāt know what the real issue is. Depression, anxiety, OCD, PTSD, and last year my psychiatrist suggested I might have ADHD but not all the symptoms fit. Iāve been to two treatment centers in the last 5 years. Iāve received high quality care for each of my diagnoses. Iāve made a lot of progress. Back on my feet financially, a wonderful relationship, a great place to live. But here I am. Strangely, it seems like I cycle through symptoms randomly. My feelings donāt always match the situation. Iām sad one minute and silly and happy the next then irritated then numb again all within the space of hours, but out of the ~10 therapists Iāve seen over the years, none said I meet the criteria for bipolar disorder. Iāve experienced embarrassing/horrifying outbursts over the years that have scared me and strained relationships. Iāve had brain fog (and also feeling like my head could explode) to the point of being in the fetal position holding my head and then needing to go on disability leave at work. Iāve left and lost several jobs. I have also been experiencing increasingly worse memory issues over the last couple of years. So much so that I told my psychiatrist I was afraid I had early onset Alzheimers, thought it could be an OCD fear (diagnosed with OCD in 2020) or that maybe it was my medication causing it. I got off the medication, did ERP (standard therapy for OCD) around the fear, but the memory issues remain. I have also noticed aphasia (increasingly getting worse not being able to find the right words).
I have the tension headaches and the neck pain, the physical symptoms that sound common to chiari. But these cognitive symptoms. Iām stuck in this uncertainty of are they caused by Chiari? Is it just that I am mentally ill and thatās that? Before this diagnosis I had accepted my mental illness as a lifelong thing. Now I am almost angry that maybe itās caused in part by Chiari, that I wasted years feeling crazy and isolated.
Looking forward to learning more from all of you. And looking forward to the neurosurgeon appointment.
Hey Alli,
First off, Welcome to Benās Friends. Secondly, you are not alone. Why do I say that? Because for many of your points I could easily say āMe Tooā. For many years I had been having some weird and wonderful symptoms, but no physical cause was found. Seems it was easier to label me āCrazier than a box of frogsā than to actually investigate. 'We canāt find anything wrongā¦ ā¦it must just be YOU", like we choose to be in this situation. GGrrrrrrrrr. I didnāt choose āTHISā. That self-doubt can eat us up from the inside. Donāt let it.
First up they blamed drugs and alcohol, sure I didnāt mind either, but they werenāt a problem as far as I was concerned. They put me through a detox program and then rehabilitation repeatedly, but my symptoms did not resolve. Then came the mental health diagnosis, Depression, anxiety, OCD, PTSD, stress, past stress, present stress, future stress etc. I canāt think why I could be stressed. They even locked me up in a psych ward ācos you must be crazy to be having pain like that. We canāt find anythingā¦ā I learnt it was safer just to keep my mouth closed and not say anything. Well, that was until they did find something, then they came out with āWell, why didnāt you speak up earlierā¦ā I had but nobody was listening. My frustration was HUGE.
I have found that, as patients, we go to doctors to get answers āWhat is going on here?ā But when the medicos donāt have the answers, they often put it back on us rather than admit that their knowledge is not as complete as they like to profess. As one dr said to me āIām the dr, I have completed years of study, so I know. You? youāre just the patient, you wouldnāt knowā¦ā I wanted to rip his damn head off. Arrogant sod. Like you, I often look back at those āwasted years feeling crazy and isolatedā with anger. I now ātryā to turn that anger into resolve. I want answers. I say ātryā because Iām not always successful, but that anger can become really self-destructive. Donāt let it.
I have found that some medicos like to use the most simple theory of A+B=C or Symptom āAā + Symptom āBā equals Diagnosis āCā, but thatās much too simple for me. For me itās much more like āA+B-CxD/EāFā¦ā and every one of them is variable, so having a simple diagnosis is near on impossible.
Itās great that you have a neurosurgeonās appointment BUT hereās my suggestion: Do not be going to the appointment with any great expectation of obtaining answers. It can be really soul destroying having those expectations only to come away without those answers you seek. If you get the āanswersā thatās a bonus. Iāve had many a Dr come out with āohh, but you have a history of mental health issuesā¦ā like thatās the answer to everything, but Iāve also had a history of dealing with arrogant medicos too, although that is never identified as a contributing factor by them. As Iāve often said to others āYou know āYOUā better than anybody. Donāt let them discredit your concernsā but go along with an open mind. Listen to what they say, take notes, then investigate for yourself.
And remember, You are stronger than you think you are. Youāve proven that by just getting to this point. Donāt be doubting yourself.
Merl from the Modsupport Team