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Can you have Chiari and still pass the eye test?
Since January of last year I've been having one problem after another that seemed to start with headaches. I'd been having a long bout of insomnia and during this I was experiencing shooting sensations from my neck through to my head that would shock me. I'd had a series of panic attacks as well that dissipated with my insomnia. After the Insomnia went, I was left with a numb pressure headache through my head that is more prominent on my left. Not so long after this I'd been feeling crawling in my head on either side of my head and eventually on the top of my as well. I went to my Doctor and she ran some blood tests for me, I was found to have Iron deficiency anemia and low vitamin D.
I've also had an ultrasound of my Spleen, Kidney's, Liver and I think Gallbladder, these also seemed to be ok. This made me think that my problems can mostly be traced to these deficiencies and possibly anxiety. That was until I noticed these liquid feelings in my head that I would feel trickling over my forehead and also through the sides of my head into my ears. This then sparked ear fullness/pressure whenever this liquid sensation would occur (it is now daily) with some ringing in the ears intermittently. It feels like it comes up into my throat too but I can't tell. At one point I even went to A and E as I couldn't bare the headaches, they gave me a CT scan of my head and I was told my head is fine, my sinuses were also ok. On hearing my complaints of this new symptom of my headaches, my doctor referred to a Neurologist who I saw roughly 7 months later,. I couldn't sleep the night before my appointment (probably due to anticipating how this would go and just not being able to). I tried to explain my symptoms to him, although I don't think that I did very well as he told me that letter he received from my Doctor detailed symptoms different to the ones I told him that I had. He did a very quick test, checked my reflexes, asked me to move my face, my sensations and shone a light into my eye. He told me that it's all normal, that I just have anxiety and my other problems will resolve when my Iron and Vitamin D return to normal. On taking the Iron pills I came out in a rash and I was then getting numbness and weakness, sometimes stiffness that I could feel through my limbs. They can feel cold and it hurts when I move my limbs or lift them (low b12?) The left side of me feels more numb than my right.
I've been having memory problems (forgetting things I just said, perception of time is completely off) and I've been a lot more irritable this past year. I've spoken to my Doctor the other week about the appointment with the Neurologist and she said that I can't have pressure in my brain as the Neurologist would've been able to see so from looking at my eyes. What I'd like to know is, could Chiari still be a culprit? Or can this not be the case if my Neurological exam was clear? I've read that the symptoms of Chiari can be awoken from an infection and that maybe that is what I've had as I've been having issues with my head that I can't get rid of. They won't go even if I take Ibuprofen or any pain killer. Could I have had a CSF leak but from something else and not Chiari? I've been thinking that I should perhaps ask my Doctor about seeing an Ear, Nose and Throat Doctor. I'm just totally perplexed as to what this could be. I've been turned upside down by this and it has given me such bad health anxiety. I could have slipped disks, perhaps a blockage somewhere, internal cysts but I wouldn't be able to find out because the Neurologist said that I'm ok. If I have a circulatory, hormonal or bone problem, should I ask to see an Endocrinologist, Hematologist? I've had some more blood tests done recently and will be seeing the Doctor on Tuesday to ask about how those went. I saw an Ophthalmologist a while a go and he said that vision is good, took a photograph of my internal eyes and he said they are fine. I think he would've told me that I needed glasses if my headaches were caused by my eyes.
The rest of my symptoms are popping feeling under scalp, temple pain, fatigue, numb face, pulse in head, after burn images of what I just looked at, floaters, light that flashes then disappears, vibration in vision, confusion, twitching eye, balance effected by head, short of breath, foot cramps, neck pain/tight, clicking joints (calcium level is ok - baffled), issues with listening clumsy, poor sleep, back pain, intense lower back pain when I've been on my feet for longer than an hour, sensitive to loud noises, internal tremors, bladder, constant thirst/hoarse voice and most recently irregular periods, big thigh spasms, leg twitches, soreness in ribs. There is probably even more. I realise some of these are just my deficiencies. I have Depression mainly caused by these symptoms that I'm getting help for, being evaluated by a Psychiatrist on Monday who will decide who I'll be sent to see. Sorry about how long this is. Willing to hear and try any suggestions, I'm not sure where I go from here.
I've also had an ultrasound of my Spleen, Kidney's, Liver and I think Gallbladder, these also seemed to be ok. This made me think that my problems can mostly be traced to these deficiencies and possibly anxiety. That was until I noticed these liquid feelings in my head that I would feel trickling over my forehead and also through the sides of my head into my ears. This then sparked ear fullness/pressure whenever this liquid sensation would occur (it is now daily) with some ringing in the ears intermittently. It feels like it comes up into my throat too but I can't tell. At one point I even went to A and E as I couldn't bare the headaches, they gave me a CT scan of my head and I was told my head is fine, my sinuses were also ok. On hearing my complaints of this new symptom of my headaches, my doctor referred to a Neurologist who I saw roughly 7 months later,. I couldn't sleep the night before my appointment (probably due to anticipating how this would go and just not being able to). I tried to explain my symptoms to him, although I don't think that I did very well as he told me that letter he received from my Doctor detailed symptoms different to the ones I told him that I had. He did a very quick test, checked my reflexes, asked me to move my face, my sensations and shone a light into my eye. He told me that it's all normal, that I just have anxiety and my other problems will resolve when my Iron and Vitamin D return to normal. On taking the Iron pills I came out in a rash and I was then getting numbness and weakness, sometimes stiffness that I could feel through my limbs. They can feel cold and it hurts when I move my limbs or lift them (low b12?) The left side of me feels more numb than my right.
I've been having memory problems (forgetting things I just said, perception of time is completely off) and I've been a lot more irritable this past year. I've spoken to my Doctor the other week about the appointment with the Neurologist and she said that I can't have pressure in my brain as the Neurologist would've been able to see so from looking at my eyes. What I'd like to know is, could Chiari still be a culprit? Or can this not be the case if my Neurological exam was clear? I've read that the symptoms of Chiari can be awoken from an infection and that maybe that is what I've had as I've been having issues with my head that I can't get rid of. They won't go even if I take Ibuprofen or any pain killer. Could I have had a CSF leak but from something else and not Chiari? I've been thinking that I should perhaps ask my Doctor about seeing an Ear, Nose and Throat Doctor. I'm just totally perplexed as to what this could be. I've been turned upside down by this and it has given me such bad health anxiety. I could have slipped disks, perhaps a blockage somewhere, internal cysts but I wouldn't be able to find out because the Neurologist said that I'm ok. If I have a circulatory, hormonal or bone problem, should I ask to see an Endocrinologist, Hematologist? I've had some more blood tests done recently and will be seeing the Doctor on Tuesday to ask about how those went. I saw an Ophthalmologist a while a go and he said that vision is good, took a photograph of my internal eyes and he said they are fine. I think he would've told me that I needed glasses if my headaches were caused by my eyes.
The rest of my symptoms are popping feeling under scalp, temple pain, fatigue, numb face, pulse in head, after burn images of what I just looked at, floaters, light that flashes then disappears, vibration in vision, confusion, twitching eye, balance effected by head, short of breath, foot cramps, neck pain/tight, clicking joints (calcium level is ok - baffled), issues with listening clumsy, poor sleep, back pain, intense lower back pain when I've been on my feet for longer than an hour, sensitive to loud noises, internal tremors, bladder, constant thirst/hoarse voice and most recently irregular periods, big thigh spasms, leg twitches, soreness in ribs. There is probably even more. I realise some of these are just my deficiencies. I have Depression mainly caused by these symptoms that I'm getting help for, being evaluated by a Psychiatrist on Monday who will decide who I'll be sent to see. Sorry about how long this is. Willing to hear and try any suggestions, I'm not sure where I go from here.
COMMUNITY LEADER
A Tornado....goodness that is something that would scare me.... we tend to not get them in this area either, if we do it is rare.
The heating pad is great...I get up and do a few things, then sit with the heating pad, and then get up and do a little more...it works...lol..
We just keep getting snow right now, but the temps have been a roller coaster...warm one day then below freezing the next....
All I can say is spring can't come fast enuff....
Ah I'm glad you had those to use this time. No one wants to have to go to A and E if they can avoid it. A heating pad sounds nice. Yeah the weather has been terrible here as well. There was recently a mini Tornado near me, not something you ever hear about happening here.
That's good then :) and thanks yeah I will.
That's good then :) and thanks yeah I will.
COMMUNITY LEADER
I had a flare during the summer that ended with me in the ER....I got meds and only used them during the flare, so I had them to use during this last one, now I do a little and sit with my heating pad and have been able to keep the flare at bay....this weather tho is really getting me...one storm after the other.
But so far I am doing ok. Thanks for asking : )
Good luck with ur PCP and do keep us posted on how it goes : )
It should get to a point where you won't need to have those injections anymore or just until your anemia has lessened, you should be able to switch to supplements. I don't know for sure what other feelings taking Iron has provoked for me, is hard for me to keep up with all that's wrong with me lol.
It's been like that for me as well. I'll go into my Doctor's office, tell her a few of my issues and then um and ah about the 10 other things I've now forgotten. What do you mean about not being able to talk? That sounds pretty bad, do you mean out of feeling nervous or because of a medical condition? Is it related to Chiari? If you've also explained your eyes to a Doctor then they should still send you for more tests. I would try seeking out another Doctor. What country are you from?
It's been like that for me as well. I'll go into my Doctor's office, tell her a few of my issues and then um and ah about the 10 other things I've now forgotten. What do you mean about not being able to talk? That sounds pretty bad, do you mean out of feeling nervous or because of a medical condition? Is it related to Chiari? If you've also explained your eyes to a Doctor then they should still send you for more tests. I would try seeking out another Doctor. What country are you from?
Hope you're able to keep the flares at bay until then. Yeah they do, you're right, sorry to hear that they just offed you in the deep end like that. Have you been ok?
Yeah, I'm going to try once or twice more with my GP but I won't hold my breath. Waiting on money which I'll be getting in about a week and then see if it's viable for me to go private for as long as is needed to get these tests and any consultants that I'll need to see.
Yeah, I'm going to try once or twice more with my GP but I won't hold my breath. Waiting on money which I'll be getting in about a week and then see if it's viable for me to go private for as long as is needed to get these tests and any consultants that I'll need to see.
I was reading your journy so far and I am in the same boat i have iron defic and I had to get injections i dont recomend them they hurt really bad and makes your pain worse...I am in the beging of my journy.....I understand how frustrating it is when the doctors dont listen and I also know how they dont hear us....my question how can I tell the doctor my symptoms if I cant remember them and also what if I cant talk the day of the appointment...When I was younger I had eye surgery so my eyes dont go crossided and when they do the tests they dont reacft so they think I am fine it is frustrating
COMMUNITY LEADER
Lucky for me, the flare is over so I guess it depends on when it flares again, and by then I hope to have all my INS issues sorted out.....when the GOV changes how the INS is handled and cancels what u had, that makes it hard....they need to keep out of it...lol...
It is not an easy process, as I said this condition is called rare but it is far from being rare ...well experienced and informed Drs on the condition are rare.
So it's not only really hard to find out that you have this and then to sort it out all doesn't come cheaply. I shouldn't moan as much when I get a choice of having to pay. Are you going to wait a few months then?
Yeah, it has to be mind over matter with these things. Doesn't make it easy that it's your head that can be the most unbearable. It's good to see how supportive people on these forums, people such as yourself being as helpful as you are. I will do and you too as well if you can, aren't too busy.
Yeah, it has to be mind over matter with these things. Doesn't make it easy that it's your head that can be the most unbearable. It's good to see how supportive people on these forums, people such as yourself being as helpful as you are. I will do and you too as well if you can, aren't too busy.
COMMUNITY LEADER
I have had surgery for Chiari, but still need a few more for related conditions, one is screaming at me with pain saying it is time to have that next surgery....but to get to the specialists at this time of yr, plus our medical INS just all changed so I need to make sure what my coverage is.....
It is a very frustrating and bumpy ride this Chiari journey....but by sharing with each other, it can help....
Keep me posted on how u r doing <3
Not sure how having depression would keep u from a colonoscopy??? - My thoughts exactly! Guess I will just have to keep improving my diet as my Doctor will probably say the same about being seen again for my gut as she did for the Neurologist.
Thanks, I'll have a look at their site now.
That has to be really frustrating. You must've been put through the ringer like loads of others with this. Are you being treated adequately for this or have you been? It's probably not a very different situation in the UK if Doctors here aren't informed it in their studying/training, like in the US.
Your posts have cheered me up a little, to have someone listen is always nice. Yeah I'll have to keep trying :). Let one too many of my problems slide with disappointing answers.
Thanks, I'll have a look at their site now.
That has to be really frustrating. You must've been put through the ringer like loads of others with this. Are you being treated adequately for this or have you been? It's probably not a very different situation in the UK if Doctors here aren't informed it in their studying/training, like in the US.
Your posts have cheered me up a little, to have someone listen is always nice. Yeah I'll have to keep trying :). Let one too many of my problems slide with disappointing answers.
COMMUNITY LEADER
Not sure how having depression would keep u from a colonoscopy???
Since u r in the UK, u will want to look at the list of Drs from the Ann Conroy Trust.
Here in the States, there are many Drs that do not know enuff about Chiari or have experience treating it,,,so those that stumble upon it consider it an incidental finding and feel that it is not the cause of ne symptoms....they just do not know....
So push for answers....
Lol I was gonna start my reply with thank you for your response and then my mouse moved without me meaning it to and selected best answer. I must look keen. Still though, thank you.
Yeah, I've been giving quite a lot of consideration to having this, doing much browsing online about it (symptoms keep pointing me to this) and discovering that many people with similar worries to me have been told their symptoms either aren't related to this or it's taken them years to land a diagnosis of Chiari. Both of those even isolated from Chiari are enough to frustrate people enough to make them feel, well crazy, when in truth it is the opposite.
I'm glad that you've mentioned having these tests as I've asked my Doctor a few times about having an MRI done but she feels that should I have needed one, that the Neurologist would've arranged one for me. I'd be grateful if she could send me to a different one for a second opinion but it looks doubtful that she will. Should I push it for it anyway? I've been giving thought to going private instead for an MRI if it's the only means that I can get one. I think it's just the standard for doctors/GPs to follow the specialist's (Neurologist) words and not criticise it.
When I see I'll ask if she can check my Magnesium for me. Do you think I should request allergy tests as well or be sent to someone that can perform several for me? I've seen a General Medicine Specialist for my gut (didn't say so in the post but digestion has been troublesome too, Gastritis that will come and go) and told me that they wouldn't do a Colonoscopy for me as I have Depression. She didn't think it could be IBS because I wasn't having the pain typical of it then. That like the rest of me has worsened and I have burning a bit above my belly button. I have been eating more Spinach, Kidney beans, need to up my intake of meat.
Yeah, I've been giving quite a lot of consideration to having this, doing much browsing online about it (symptoms keep pointing me to this) and discovering that many people with similar worries to me have been told their symptoms either aren't related to this or it's taken them years to land a diagnosis of Chiari. Both of those even isolated from Chiari are enough to frustrate people enough to make them feel, well crazy, when in truth it is the opposite.
I'm glad that you've mentioned having these tests as I've asked my Doctor a few times about having an MRI done but she feels that should I have needed one, that the Neurologist would've arranged one for me. I'd be grateful if she could send me to a different one for a second opinion but it looks doubtful that she will. Should I push it for it anyway? I've been giving thought to going private instead for an MRI if it's the only means that I can get one. I think it's just the standard for doctors/GPs to follow the specialist's (Neurologist) words and not criticise it.
When I see I'll ask if she can check my Magnesium for me. Do you think I should request allergy tests as well or be sent to someone that can perform several for me? I've seen a General Medicine Specialist for my gut (didn't say so in the post but digestion has been troublesome too, Gastritis that will come and go) and told me that they wouldn't do a Colonoscopy for me as I have Depression. She didn't think it could be IBS because I wasn't having the pain typical of it then. That like the rest of me has worsened and I have burning a bit above my belly button. I have been eating more Spinach, Kidney beans, need to up my intake of meat.
A couple of things I want to add are that I've stopped taking the iron because of the rash and symptoms it gave me, looking for a gentler one I can use instead.
I've had tests for STIs and I don't have any.
Also, sorry for leaving out words hear and there, can't seem to edit the question.
I've had tests for STIs and I don't have any.
Also, sorry for leaving out words hear and there, can't seem to edit the question.
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Hi and welcome to the Chiari forum.
Just reading over ur thread I can see u have Chiari related symptoms....many of us are sent to a shrink bcuz of the anxiety, but it is chiari related....
U mentioned many tests but u did not mention the ones u should have for related conditions once u have a Chiari DX....a CINE MRI to see if u have a CSF obstruction...MRI's to see if u have disk issues, tethered cord....then testing to see if u have ICP, POTS, sleep apnea, ehlers-danlos.
The vit D, B12 and minerals Magnesium and Potassium should be checked....too, since u know the vit D was low, it is possible u r low on Magnesium...so ask ur dr about these.
Have u modified ur diet so u get more iron?....