Chiari Malformation With ADHD - A Lot Of Cognitive Issues
Jan 13, 2015
I am an adult with ADHD, 15 months ago I had decompression surgery as I had a syrinx almost the full length of my spine and Chiari malformation. The syrinx has reduced massively but is still large. I have had many symptoms following surgery but am wanting to know if any chiari patients also have experience with ADHD as alot of the cognitive issues I am having now are similar to ADHD like lack of concentration and taking in information. From what I can find there is no official info about this so I was hoping to hear from anyone who has a personal experience of this. I don't know if I can expect to return to normal as alot of the cognitive symptoms I already had but on a much smaller scale.
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I had my decompression surgery and a cranio-cervical fusion about 8 years ago. I started to have headaches, dizziness and numbness again. I had an MRI and it shows a significant decrease in the flow to the back of my lower brain. Has anyone had this happen? Does it involve another surgery?
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Over the years I have been having issues breathing as well as chest pains and a host of other symptoms. I was diagnosed with another condition however recently doctor's at discovered that I indeed have Chiari Malformation 1 and not what I was previously diagnosed with. The past two days my breathing have been terrible, I feel as though I am struggling to breathing, which makes me light headed. I also find that I have to take deep breath in-between speaking. I also have been having mental lapse as well. Is this normal with Chiari?
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Opinions please, from people diagnosed with a reduced CSF flow. And from those who have had surgery because of it. Or anyone who had advice.
I am 61 years old. My Chiari is only 1.5 mm. My last MRI said I have a mild reduction in CSF flow. No syrinx.
I am finding it increasingly more difficult to concentrate and wonder if the mild reduction in CSF flow could be the reason. Or, am I just getting old? I need to make a living, yet I have so much brain fatigue and overall not feeling well, that I am not succeeding.
I am not being productive and even though I need to care, I don't have the energy to. People, like my GP, try to convince me it can't be the Chiari (though I have not talked to him yet about the reduction in CSF flow). Maybe he will change his mind. But it is to the point that I doubt my judgement, wonder if it is mostly depression or just aging.
I am not begging my doctor for pain medication so he is concluding it can't be hydrocephalus. I understand that may be so, since that would have shown on the MRI too, but can the mild lack of CSF flow be causing problems anyway? If so, how?
I have learnt to put up with headaches and don't like meds stronger than Tylenol with codeine, which doesn't work. I do not want to end up dependent on more medications. Can't afford the ones I take!
Sometimes I have the headaches and neck pain for weeks. But even when that goes away I feel in a fog, and get double vision. It is both too hard to take in information and too hard to see. I only read on the computer or iPad now. Reading print is too frustrating to be a pleasure.
I hear words but my brain is usually too slow to process it. It's scary. I keep rewinding the TV and asking people to repeat themselves. This is life changing because I don't like to socialize anymore. It's embarrassing!
Throughout my life I have had periods where I feel in a fog and periods where my head feels relatively clear. I went through times of relatively good health, but never knew what kind of a day it will be. I failed grade nine because I couldn't concentrate but later got a university degree.
So I think I am intelligent, but am afraid that with a lifetime of blocked CSF flow there is brain damage. I don't have a bad gait, urinary problems or numbness consistent with hydrocephalus, thank goodness! But I just feel that my thoughts are too slow to function the way I need to, among other symptoms.
I haven't worked outside of the home for five years now, though I do need an income. Been trying to build a career in a field which I prefer not to mention, working from home. But it takes more energy and concentration than I have and I'm being left behind, as usual.
I would like to know if I am obsessing over this Chiari thing, blaming it for my problems when it might be depression and anxiety. Should I just forget about it and leave well enough alone? Or would surgery help me get my concentration and energy back?
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One week post op. Anterior cervical disc fusion - 3 levels. Painful lump on side of neck with incision and Doctor is not answering questions until 2 week office appointment. What is this ?
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I've recently been diagnosed with Chiari Malformation type 1 and after reading up on the condition I found that lots of people with the condition either already have or develop syringomyelia. Does anyone know how likely it is that this will develop? Also, does anyone know if the symptoms will continue to worsen over time or will they improve now I'm on medication?
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I have always had problems with bowel movements with my chiari before surgery but this is intense. I am going five days with no urges to go at all ever since my surgery, so every five days I go. I am doing laxatives to go at every five days. It is getting painful. Is this normal? I know that constipation is normal with pain pills but usually there is an urge to go and you just can't. But the feeling to go has completely left. I'm worried. My stomach is swollen I look pregnant and is nearly as painful as my recovery from surgery. I am taking everything they told me- stool softener, miralax, benefiber, milk of mag, and suppositories. The pa said to avoid enemas if I could. Has anyone else had this problem?
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I have Chiari Malformation and was told I have EDS as well, I'm in the process of getting an official diagnosis. Besides headaches and other symptoms, one of my biggest problems is nausea! I had the stomach bug back in January and it seems that ever since I have been extremely nauseous 80% of the time. I've been tested for GI pathology and food sensitivities and nothing seems to correlate. Been thinking of possibilities with sugar or salt/electrolyte problems? It's worst at night, I wake up an hour or so after falling asleep and I'm extremely nauseous, I feel as if I move I will throw up and my body is shaking, like tremors.
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I have a child recently diagnosed with chiari malformation type 1. His age is 4. It started with vision and hearing issues, then breath holding spells when hit in the head. All started at age 2. He has strabismus with esotropia. Recently started having spells where he will drop to the ground and cover his eyes (photosensitivity) complains of spinning, they last 2-4 hours followed by 24 hours of vomiting. The neurologist believes this is unrelated to the chiari. I have scheduled a second opinion with a neurosurgeon. He also is constantly smelling everything. Any thoughts on that part? I was wondering if this is all related to chiari and if he has the decompression surgery will it fix his vision and hearing?
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Today I had a ECG stress test on a treadmill and after only two and a half minutes my BP went from 140/67 to 236/51. Has anyone heard of it being so high and with such a difference in systolic over diastolic? The diastolic actually dropped while still exercising. I am told to get an echocardiogram stress test now to determine if it is extreme hypertension rather than CAD. Has anyone else had this? Could it be chiari related. I am thinking my problems are heart related rather than chiari related now, but lucky me, it could be both I suppose.
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Was referred to a neurosurgeon to see a physiatrist which then referred me to 2 other drs - a neurotherapist and a neuropsychologist. also prescribed nortriptyline. i guess i shouldn't have said i was a little depressed. but man isn't feeling that way probably normal after a car accident, then chiari diagnosis, then possibly brain surgery, and finally after being told i may never again get to play the sport i love which is hockey because of all this? been to 3 neurosurgeons - 1st two say surgery is an option and come back when you're ready basically. 3rd one referred me to physiatrist and said basically surgery will be an option down the road. 26mm herniation with a CSF blockage (i had a cine study with 2nd neurosurgeon). jw if anybody else has been down this road. feels like im taking steps backward instead of forward...
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I'm 23 years old, I was diagnosed and had Decompression Surgery at 16. I have had nearly every symptom of Chiari that I have read about and this isn't new. Ever since I can remember I have seen and heard things that aren't really there. Although I always knew it wasn't real, most the time, it startles me. I have been treated with anti-psychotics and anti-depressants my whole life to no avail. Untill now I accepted the fact that it was just psychosis, but in the last year I have weaned myself off of all medication for depression, anxiety, and psychosis and behold! My depression and anxiety have diminished to nearly being non-existent. I AM HAPPY! But when I get a headache, the back of my neck/head swells and when it gets bad, I start hearing voices, screeching and loud knocking noises. It also feels as if there are people touching me, pulling at me, my skin crawls like there are ants inside of me. Also I see flashing lights, floaters, my vision gets blurry and distorted as if I am looking into those trick mirrors at carnivals.
I am scared of being labeled depressed and psychotic by doctors so I don't say anything. I have been dismissed by the only neurologist I have seen since my surgery, she even said I was 'cured' by the surgery. ARE these symptoms of Chiari or AM I crazy?
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I am not diagnosed as of yet. I do know that I have a chiari malformation 1. About 7-8 days ago I started noticing some visual changes in my left eye. I do notice intermittent pain/ pressure to my left eye and forehead. The best way I can describe the visual changes are as an ocular migraine- everything looks really bright, some blurriness, flashing lights, and the black letters on the bright white screen of my phone look a little dull- however these symptoms come and go over the day, they are not constant. I do notice that the symptoms come on with activity, bright lights/colors, heat. I did have a sinus infection 2 weeks ago and continue with the sinus pressure. I saw my eye doctor who completed a dilated eye exam and said all was normal. Has anyone else had these symptoms with optic neuritis? These symptoms are very concerning to me- didn't feel the eye doctor took me very serious.
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I have recently started cbt therapy following a traumatic death experience. During my therapy session I started to get involuntary movements that i knew were happening but I had no control over...
My therapist didn't say anything about them and I didn't ask just wanted to get out at the end. All she suggested was maybe now is not the right time for exposure therapy and to consider less invasive counselling first.
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I am on day 7, of 20mg of Adderall. I also take 900mg of gabapentin. I have noticed that I Have only been eating one meal a day and Exercising cardio for an hour a day but my Weight is still the same... Is this normal?
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I feel like depression has a hold on my life, a really tight hold, and at this point I don't know what to do anymore. Its so severe that it has affected my way of living so much. I'm not the same girl I once was. I am hurting so much on the inside, even though I have to keep a strong face on for the world to see. I think that is where my anxiety comes into play. That and my ADHD. School has always been so so hard for me. That made me severely depressed starting in middle school. I could not understand why I was so bad at math. And I got mediocre grades/gpa because of my math problems. I was in Catholic school my whole life, and having to go to public high school was very hard for me. I was not used to that environment and was bullied and picked on. I know its really not a big deal, but I was only 14-15 and it really did affect me I feel. I was bullied about how ugly I was, how short i was, I was physically bullied and had stuff thrown at me in class all the time, teachers would do nothing (in fact one teacher even made it worse and chose the side of the bullies, aka the favorites of the class, and my school therapist at the time had to defend me). I would skip class to avoid my tormentors. My anxiety worsened because of this, my parents did nothing, made me stay at the same school, and I would have to hide, in the bathroom and the library, could not even have lunch. It was so hard for me. Now that I'm in college its amazing that I don't have to worry about any of that. People are so different, but I'm so depressed about the fact how hard math still is for me, and classes in general, and the fact I have no friends at all, none whatsoever. No matter how hard I try I feel like I lost my ability to socialize with people like I used to. For fear of being made fun of. I also don't want to be left (I have abandonment issues because of my dad leaving). So i figure there is no point in getting close to someone if they are just going to hurt and leave me. I feel like such a loser, I'm in my second year of community college and I don't even know what to do. I don't know how to drive (I had a very strict mom and stepdad, they never taught me how to drive, didn't want me driving) so by the time i was 18 i just kept putting it off I guess. I don't even have a job yet. I've been looking and its so hard to find. I feel like everyone is passing me by, and it really makes me feel like the biggest loser in the world. What hurts most is no one understands how severe my depression is, my mom thinks I just don't care and am "lazy" when in fact its the complete opposite. I want nothing more than to be better and healthy so I can move out of this house. I don't know what else to say besides I want help on how to get my life back on track. I'm on meds but I still feel terrible. My psychiatrist didn't prescribe me adderall even though she saw how severe my ADHD was, and felt it was more important to treat the "depression" which is stupid, because I'm just not depressed for no reason. Things cause depression and I feel my ADHD is a big cause of my depression. Anyway I'm rambling and don't know what else to say besides I really want advice, and hope I'm not the only one in this situation. I have no one to turn to.
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I am 18. The past 3 months I've been losing everything and I feel like I'm getting worse. Generally I forget things but lately I misplace my belongings more frequently ( wallet, keys, phone). It also happens at work, in less than 2 weeks i forgot to punch out 3 times. Last weekend I misplaced my wallet 3 times, and today I left my keys in my friend's car. I feel like I have no control at lot, i try so many things and nothing works. I read an article saying that it can be caused by stress(I'm a college student, and part time work) but the fact that I have always been the unattentive one between my Friends makes me wonder if I have ADD.
Side note: My brother has ADHD and I would like to know if my mom having major depression when she was pregnant with us( not twins but one pregnancy right after the other) can influence this.
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I really want to breastfeed my son I breastfeed my first son 8 years ago but this time there are third medications that would have to be changed in order to make that possible. One is for diabetes, changing that could be dangerous. The others are for adhd and anxiety, I need to go back on to be able to function to the best of my ability. But breastfeeding is so good for the baby is easier and cheaper. I feel like i'm being selfish in away if I don't breastfeed but if I don't have my meds. That could prove to be bad to.
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I have a 10 year old son who is diagnosed with ADHD, Anxiety, SPD/IPD and rule out of Asperger's/PDD in 2013. Currently, we have him on Methylphenidate ER 30mg per day, but lately we have been noticing issues. Mind you, the school hasn't been very helpful this year with information on how he is doing so I can only go by the vague messages received... the first 6 months, they say he was great! Though I have documents to prove otherwise - lately though, the teacher keeps saying he lacks focus, needs to pay attention and all that jazz. (I say it so flippantly because this teacher has been a pain to work with.
I spoke with the doctor and she wants us to come in next week to discuss his meds, but we have had issues with additives in the past and it's not a route I want to go... to sit and wait. His diet is modified already, we also work with a behavioral therapist and a chiropractic neurologist and he takes Taekwondo.
With all this, I'm wondering if anyone has tried the genetic testing (IE: HarmonyX or Genesight) to see what meds would work best with his specific genetic makeup?
I read all these stories of parents having all these issues and suddenly their kids are on Vyvanse or something else and it's a miracle. I wouldn't mind that... him being able to function better at school (academically and socially) ... he gets bullied (though he can start it up too) - I just wonder, what next?
Here is his medication history:
August 2011 – Vyvanse ??mg (very small amount)
September 2011 – Vyvanse 30mg (adjusted to 30 mg)
May 2012 – Trial samples of Intuniv w/ Vyvanse for two weeks. After two weeks he was out of school and parents decided not to continue the Intuniv.
September 2013 – Intuniv 2mg w/ Vyvanse
September 2013 – Concerta 36mg (removed from Vyvanse and Intuniv because he became over-emotional and violent/aggressive)
December 2013 - Concerta 54mg (Dr. Snyder prescribed)
March 2014 – Methylphenidate 10mg (3 times a day) (March 7th thru March 14th)
Methylphenidate 15mg (3 times a day) (started March 15th)
April 2014 – Methylphenidate 20mg (3 times a day) (started April 14th)
May 2015 – Adderall (adderall) 10mg (3 times a day) (started May 14th)
June 2015 – Adderall (adderall) 15mg (3 times a day) (started June 3rd)
August 2015 – Guanfacine 1/2mg (3 times a day) (started August 21st)
September 2015 – Methylphenidate ER 30mg (once a day) (started September 6th)
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i've been taking meds for bipolar disorder and ADHD since I was about 6 or 7, when I was about 13 I was taking a total of 17 pills everyday, it wasn't until about 9 months or more that I was put into a hospital for an immediate detox. my doses have always been as high as I can get. Right now I'm taking bupropion 450 mg, vyvanse 120 mg, intuniv 300mg, and at night I take zolpidem 20mg; everyday! But sometimes when I don't wake up and take my pills in the morning I get stomach pains and I feel like c**p. My mom said that I need to go see a doctor and have tests done to see if I have liver damage, but all I keep hearing is that I should smoke weed. It would help with my stress and anxiety and my eating disorder ( I sometimes put off eating when I feel bloated). Is marijuana the best option?
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