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 don’t feel I could function without it.I tried natural alternatives but its chemical.I hope things get easier take care.
I’ve started taking lamictal for the irritability. Interesting to see some one else with this condition has dissociation, indeed!
Now! I have an update since I’ve seen my NS today. He was very knowledgeable and competent! I didn’t expect it but he was great! He said that my numbness I’ve 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 wouldn’t 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 it’s hard to be certain until you have surgery and if there’s a difference afterwards. He referred to chiari as a “box” of symptoms which made me think of Pandora’s box lol. Chiari can be chaos.
So, since my chiari is both symptomatic and quite large, he thinks I may need surgery. I’m 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 he’s 90% certain he’s 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 don’t think I knew what I was in for it is a bit like Pandora’s 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 “weird feeling” 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 wouldn’t 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 that’s 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 ‘‘Netflix’’ were you live or ‘‘google it’’ 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
I’ve had traumas too that I think could contribute to the dissociation but it is so hard to tell! It’s just such a weird feeling. Thanks for the advice on the earplugs and that Netflix recommendation! I’ll have to check that show out.
OHH WOW!!! This is what I really like and appreciate about Ben’s Friends, like “PHEW, it’s not just me”.
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 '…to be having sensations like that you must be crazy… …it’s hypochondria ’ 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 ‘why didn’t you act sooner?’ ‘because of the judgements that had been made before’ why would somebody speak up when the (so called) professionals say there’s nothing wrong and it’s 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 ‘ohh there’s nothing wrong’ from the dr’s 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 there’s an issue, I act. I have symptoms EVERY day. The symptoms I know I manage, the ones I don’t know or are new I write down and speak to my pcp. If I see or feel a progression of symptoms, that’s a sign there’s a bigger issue, and something is wrong then I act.
For myself, once I was given a label of ‘a mental health issue’ it followed me everywhere. Even today, over 25yrs since the mental health diagnosis it still pops up as ‘A history of mental health issues’ from time to time in my health records. I strongly believe it’s one of those “Which came first, the chicken or the egg?” 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 don’t.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 “hypochondriac” “mental health” 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 “normal” I mean no wonder people don’t feel right.Honestly makes me so upset when people don’t 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 “symptomatic depression” I mean honestly anyone who doesn’t get depressed because your scull is giving birth to your brain isn’t 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 that’s your only option and the person that gave it to you is looking at you with judgment because you don’t 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 haven’t experienced that poo sandwhich haha! they don’t know what it feels like just what there education has taught them which is limited to there perception.They just don’t know until it happens to them.
You say “…they haven’t experienced that poo sandwhich haha!..” but, sorry to say, there is no haha about it. Their textbooks are a set curriculum but this is far from set and it’s very frustrating and disappointing that they point at psych rather than a lack of that curriculum. In my opinion it’s partially a safety thing for their own egos too. Rather than admit the shortcomings of their knowledge. I completely understand that we go to dr’s for information, we go to them to utilize their knowledge. BUT rather than admit when they don’t 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 dr’s 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 answers… …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.