Aa
i hit my head, now im having head aches.
I hit my head last night but it didn't bother me until I layer down, the I started getting sharp pains in my head. They went away but keep coming back. What should I do?
What could be wrong? I've had decompression surgery before.
What could be wrong? I've had decompression surgery before.
Thank you for you're support. I refuse to give up. It really helps a lot having people to talk to.
I continue to read the responses to your posts and I am am so saddened to hear how much you are struggling with so much. I am praying for some relief to your symptoms and for some peace for your state of mind. You are coping with some very difficult issues with doctors that seem very unprofessional, not to mention uncaring. Please know that you are in our thoughts and prayers. Keep posting back so we keep current on your progress.
COMMUNITY LEADER
That is very interesting as I had the same response to them b4 I had surgery....now they help...weird....but I would suggest getting checked since having issues/allergic reactions to meds is one of the issues with us with EDS.
No I have never been tested, but that makes me incredibly curious because I am highly sensitive to anti-histimines. I was on Seroquel for sleep, but stopped due to terrible side effects, I had known prior my sensitivity to histimines but apparently not many doctors believe it is possible to be "allergic" and Seroquel acts as anti-histamine in low doses.
It put me to sleep but also sped up my heart rate and made me incredibly anxious.
I am in the process now of trying to contact Tulane, and the doctor who did my surgery, although he was pediactric I am hopeing they can recommend something.
It put me to sleep but also sped up my heart rate and made me incredibly anxious.
I am in the process now of trying to contact Tulane, and the doctor who did my surgery, although he was pediactric I am hopeing they can recommend something.
COMMUNITY LEADER
Goodness I am so sorry for all you are going thru.....did they ever check you for Ehlers-Danlos?
I ask this bcuz many of us with Chiari also have this and recent reports say they are finding those with EDS also overproduce histamines which can affect our sleeping....and a few other issues....since I am on regular antihistamines it has helped me sleep ...finally...and has also helped with my reflux as it has curbed y PND which fed the reflux monster in me......
I know the lack of well informed and experienced Drs is the biggest problem....so try to contact a true Chiari specialist if for nothing more then to consult with your current Drs....
Followed up with my PCP yesterday, same office but I saw a different physician, so frustrating. They sent a referral to the only neuro in my area that takes Medicaid but told me it will be a 3-6 month wait. I don't know if I can hold out that long honestly.
They recommended seeing a psych about my insomnia, agitation and anxiety, which I plan to do. I currently take Valium 3 times a day and it helps me none.
They prescribed me Baclofen in place of the Robaxin but said that as far as treating me there was nothing they could do, medication wise and to come back after I saw the psychiatrist.
I am currently on Topamax, Cymbalta, Requip, Baclofen, and Valium. I take Ibuprophen as much as I can even though it is destroying my stomach and also I have Fioricet from the ER but it doesn't help me any more than a cup of coffee, which I drink TONS of because it seems to keep my headaches at bay.....I feel like i'm destroying my body trying to make it through each day. The coffee probably only makes my agitation worse but I can't stand to go without it.
Last night I took the baclofen for the first time and had some of the worse muscle spasms, or possibly nerve pain, I couldn't tell, I've had yet. I don't know if it was an adverse affect or not because it seemed to alleviate the pain a little for a while, but I can only take it every 8 hours. I suppose I'll keep taking it and see.
I'm loosing weight again and averaging about 2-3 hours of sleep at night.
Again, I'm feeling incredibly hopeless and getting weaker everyday.
The Dr. said just looking at me she thought I needed to be hospitalized, I don't understand how she cant say that and not help me.
I'm considering another ER visit to the hospital in Shreveport,
I am scared they are going to commit me, even though I know that's not the kind of help I need....
They recommended seeing a psych about my insomnia, agitation and anxiety, which I plan to do. I currently take Valium 3 times a day and it helps me none.
They prescribed me Baclofen in place of the Robaxin but said that as far as treating me there was nothing they could do, medication wise and to come back after I saw the psychiatrist.
I am currently on Topamax, Cymbalta, Requip, Baclofen, and Valium. I take Ibuprophen as much as I can even though it is destroying my stomach and also I have Fioricet from the ER but it doesn't help me any more than a cup of coffee, which I drink TONS of because it seems to keep my headaches at bay.....I feel like i'm destroying my body trying to make it through each day. The coffee probably only makes my agitation worse but I can't stand to go without it.
Last night I took the baclofen for the first time and had some of the worse muscle spasms, or possibly nerve pain, I couldn't tell, I've had yet. I don't know if it was an adverse affect or not because it seemed to alleviate the pain a little for a while, but I can only take it every 8 hours. I suppose I'll keep taking it and see.
I'm loosing weight again and averaging about 2-3 hours of sleep at night.
Again, I'm feeling incredibly hopeless and getting weaker everyday.
The Dr. said just looking at me she thought I needed to be hospitalized, I don't understand how she cant say that and not help me.
I'm considering another ER visit to the hospital in Shreveport,
I am scared they are going to commit me, even though I know that's not the kind of help I need....
COMMUNITY LEADER
My deepest sympathies on the loss of your grandfather....how awful to have so many negatively affected by one lace that is suppose to heal...
Good luck with your follow up with the PCP and the referral to the Dr in Shreveport.....looking forward to updates : )
I just typed out SO much and accidently deleted it all! D:
I Went to a PCP that I used to go to when I was a kid yesterday and explained to him everything that has been going on, well, my boyfriend did because I couldn't speak, I was in so much pain, and he immediately sent me to the ER for a CT scan.
At the ER I had to explain to the Triage nurse, the Doctor and the Radiologist what Chiari even was and what the surgery was for.
I explained about my CSF leakage from my ears and nose and the doctor looked in my ears and explained to me that this was impossible due to the fact that my ear drums were intact, which made me want to pull out my phone and show him the endless amount of evidence and research on the subject but I refrained. It's just a small country hospital and they are not well educated, and not neurologist,
They gave me a shot of Toradol, which greatly reduced the pain but didn't take it away and told me about a Neurological clinic in Shreveport, an hour from where I live and suggested I go there,
The Radiologist said he said he saw nothing abnormal on the CT, but then again, how could he when he doesn't know what Chiari is, much less what it is supposed to look like before and after surgery?
(Excuse me if I sound negative but this hospital is one of the worst. Just 2 weeks ago one of the doctors there caused my Grandfather to aspirate during an upper GI and he developed pneumonia and died. My Aunt past away 2 years ago of Gastroparesis because another doctor from the same hospital did a botched operation to fix an artery in her leg, removed on going to her small intestines(only a small percent of people use it) and caused her small intestines to die and her stomach to stop working. My Uncle who passed away in 2002 was paralyzed and had a hip operation there and there didn't replace the femoral head of his leg and left him in severe pain. I know of several other terrifying stories from there as well, So to me this hospital only hires the worst of the worst.)
Anyways, I have a follow-up appointment tomorrow afternoon with my PCP, who I like very much by the way, and I'm going to get a referral for the neurological clinic in Shreveport for as soon as possible,
Thank you guys for being here for me, it means SO much,
I Went to a PCP that I used to go to when I was a kid yesterday and explained to him everything that has been going on, well, my boyfriend did because I couldn't speak, I was in so much pain, and he immediately sent me to the ER for a CT scan.
At the ER I had to explain to the Triage nurse, the Doctor and the Radiologist what Chiari even was and what the surgery was for.
I explained about my CSF leakage from my ears and nose and the doctor looked in my ears and explained to me that this was impossible due to the fact that my ear drums were intact, which made me want to pull out my phone and show him the endless amount of evidence and research on the subject but I refrained. It's just a small country hospital and they are not well educated, and not neurologist,
They gave me a shot of Toradol, which greatly reduced the pain but didn't take it away and told me about a Neurological clinic in Shreveport, an hour from where I live and suggested I go there,
The Radiologist said he said he saw nothing abnormal on the CT, but then again, how could he when he doesn't know what Chiari is, much less what it is supposed to look like before and after surgery?
(Excuse me if I sound negative but this hospital is one of the worst. Just 2 weeks ago one of the doctors there caused my Grandfather to aspirate during an upper GI and he developed pneumonia and died. My Aunt past away 2 years ago of Gastroparesis because another doctor from the same hospital did a botched operation to fix an artery in her leg, removed on going to her small intestines(only a small percent of people use it) and caused her small intestines to die and her stomach to stop working. My Uncle who passed away in 2002 was paralyzed and had a hip operation there and there didn't replace the femoral head of his leg and left him in severe pain. I know of several other terrifying stories from there as well, So to me this hospital only hires the worst of the worst.)
Anyways, I have a follow-up appointment tomorrow afternoon with my PCP, who I like very much by the way, and I'm going to get a referral for the neurological clinic in Shreveport for as soon as possible,
Thank you guys for being here for me, it means SO much,
My headaches are better since the steroid shot except a sharp pain at the right side of the base of my skull where my soft spot is.
I have had CSF leaks before and they do get worse with sitting and standing but the pain is relieved.
Last night the leakage was pretty severe, from my ears and down my throat, I can taste it and it feels as if I've inhaled a small amount of water.
As far as my doctor 'feeling' he knows what is best, he doesn't know at all. He didn't even evaluate me, his nurse did, not even a nurse practitioner.
He is incompetent. I have an appointment Monday with a new doctor, thankfully, who my mother talked to on the phone and promised he would give me an MRI and check everything out,
The doctor I just saw only gave me an X-ray of my neck, which shows nothing that could be wrong.
But no, they didn't check my nerves, pupils, or do any neurological exam at all.
I am currently feeling very weak, nauseas, dizzy along with tons of other symptoms.
I have had CSF leaks before and they do get worse with sitting and standing but the pain is relieved.
Last night the leakage was pretty severe, from my ears and down my throat, I can taste it and it feels as if I've inhaled a small amount of water.
As far as my doctor 'feeling' he knows what is best, he doesn't know at all. He didn't even evaluate me, his nurse did, not even a nurse practitioner.
He is incompetent. I have an appointment Monday with a new doctor, thankfully, who my mother talked to on the phone and promised he would give me an MRI and check everything out,
The doctor I just saw only gave me an X-ray of my neck, which shows nothing that could be wrong.
But no, they didn't check my nerves, pupils, or do any neurological exam at all.
I am currently feeling very weak, nauseas, dizzy along with tons of other symptoms.
Hi!
Sorry to hear your struggle.
Are you worse, better or the same as you were one week ago?
Why do you consider a csf leak? I read that your headaches got better when you stand up or sit up. Spinal or cervical csf leaks usually get worse sitting or standing up. And they are very rare. Have you had one before?
How do you feel now? Vomiting? Sleepy?
Did the doc at least check your nerves, pupils etc?
If you don't feel worse by now and since it has gone one week an ER visit is not equally important.
If a steroid injection would make a csf leak or subdural bleeding worse? Not with certainty but it would not be recommended unless it was necessary for some other emergency issue.
Your doc probably felt safe ruling out all the dangerous stuff before giving you the shot. It might very well have been the right call.
But if it would have been me I would probably have wanted some type of imaging done. But your symptoms and other exams must guide what they should look for, of coarse.
Sorry to hear your struggle.
Are you worse, better or the same as you were one week ago?
Why do you consider a csf leak? I read that your headaches got better when you stand up or sit up. Spinal or cervical csf leaks usually get worse sitting or standing up. And they are very rare. Have you had one before?
How do you feel now? Vomiting? Sleepy?
Did the doc at least check your nerves, pupils etc?
If you don't feel worse by now and since it has gone one week an ER visit is not equally important.
If a steroid injection would make a csf leak or subdural bleeding worse? Not with certainty but it would not be recommended unless it was necessary for some other emergency issue.
Your doc probably felt safe ruling out all the dangerous stuff before giving you the shot. It might very well have been the right call.
But if it would have been me I would probably have wanted some type of imaging done. But your symptoms and other exams must guide what they should look for, of coarse.
good idea :) lol
and thank you<3
my head is significantly better after the shot :)
and thank you<3
my head is significantly better after the shot :)
COMMUNITY LEADER
There is a way to do it without telling them they are wrong....try and ask questions such as ...if this is a pulled muscle or a CSF leak will that show up on the xray....give them the advantage to school us so to speak....lol...
I am not sure if a steroid shot would cause an issue as it does seem to be used quite a bit when there is a CSF leak...I have not heard any negative replies on it.
I am going to call my PCP back in the morning and see if he will get me a referral for an MRI, They are a bit difficult to deal with and don't like to be told they don't know what they are doing so I have a feeling he will ignore my request. If that's the case then I will go to the ER.
Thank you so much.
I'd be going crazy without this advice right now.
Thank you so much.
I'd be going crazy without this advice right now.
Are there any dangers of Steroid shots if you DO have subdual bleeding or a CSF leak?
COMMUNITY LEADER
Hi Mandy ...you are right a Xray will not show any soft tissue issue .....and you know what is going on more so then your PCP....mine did the same thing with me....ordered an xray when a MRI was needed....I had to inform him what Chiari was and he did change the RX to a MRI.....you just may need to help him understand. That would be less expensive then an ER visit.
I went to my old PCP today, and reported all my symptoms and that I hit my head and all that he did was ordered an X-ray of my neck,
There's no way to tell if there is CSF build up from an X-ray and I can tell from experience the headache is due to pressure. I am so frustrated that my doctor doesn't understand, although I received a steroid shot and it has relieved my headache a little I am still scared something could be wrong and am considering an ER visit for a CT scan or possibly an MRI.
Having dealt with this for so long I can FEEL that something is not right, the symptoms are different than before, even different than before my surgery.
There's no way to tell if there is CSF build up from an X-ray and I can tell from experience the headache is due to pressure. I am so frustrated that my doctor doesn't understand, although I received a steroid shot and it has relieved my headache a little I am still scared something could be wrong and am considering an ER visit for a CT scan or possibly an MRI.
Having dealt with this for so long I can FEEL that something is not right, the symptoms are different than before, even different than before my surgery.
Since I have first read your post, it has been a few days. Have you been able to find a doctor? And, did you go to the er to rule out the things mentioned above by Ball123? Please post back so we can know your status and continue to give you support.
Go to the ER immediately and get a ct scan of the head. You need to rule out subdural bleeding.
COMMUNITY LEADER
That should help if you are in that much pain and having the bels palsey like symptoms....do get someone to see you.
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