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Chiari & throbbing head??
New here...
was told I have chiari in june of this year with a 15 mm herniation. Everything started in january of this year. I suffered a miscarriage in nov and in jan things got bad for me. My head started hurting so badly - feeling like a lot of pressure in my forehead. It'd be worse upon getting up in the morning typically. I was convinced I had a sinus infection. I saw my pcp who put me on antibiotics & prednisone. I felt awesome once the prednisone got in my system. I seemed to have a reaction to the antibiotic however (itching all over) so I stopped the antibiotics. My head pain returned w/in a week. I later saw two ENT's. Got a sinus cat scan done which came back normal. My pcp was stumped too and put me back on prednisone and a different antibiotic to try again. Felt better but as soon as I finished the pain came back.
I made an appt with a neurologist in june who ordered a few mri's. They showed the chiari but no syrinx. Dr put me on diomax... been on it 3 wks now, but I was having awful side effects from it: upset stomach, depression, terrible low back pain, prickly hands/feet, shortness of breath, fatigue, just not myself at all .... so I couldn't stand it any longer and cut back my dosage to wean. Called my dr 3 days ago but haven't heard back yet. Diomax improved my head pain somewhat. I'm sure the dr will just want to try another drug....
My question is this. I only seem to have ONE symptom of chiari and that is the pressure in my head that gives me terrible throbbing pain when I stand up, lean over, bend down, crawl around with my kids etc. My head throbs when I turn my head a certain way too and i feel some pain on the back/side of my neck when i turn it far--like a soreness feeling.
Does my throbbing head sound like chiari? Is there anything else this could be? I have no other issues.... and this all came about 8 mos ago. Does anyone else have this throbbing?
I don't know what to do.. there are drs around who are "familiar" with chiari, but I feel I need someone who is more than familiar if chiari is indeed what is causing my throbbing pain. I'm so upset by this....
Thanks for reading if you got this far.
was told I have chiari in june of this year with a 15 mm herniation. Everything started in january of this year. I suffered a miscarriage in nov and in jan things got bad for me. My head started hurting so badly - feeling like a lot of pressure in my forehead. It'd be worse upon getting up in the morning typically. I was convinced I had a sinus infection. I saw my pcp who put me on antibiotics & prednisone. I felt awesome once the prednisone got in my system. I seemed to have a reaction to the antibiotic however (itching all over) so I stopped the antibiotics. My head pain returned w/in a week. I later saw two ENT's. Got a sinus cat scan done which came back normal. My pcp was stumped too and put me back on prednisone and a different antibiotic to try again. Felt better but as soon as I finished the pain came back.
I made an appt with a neurologist in june who ordered a few mri's. They showed the chiari but no syrinx. Dr put me on diomax... been on it 3 wks now, but I was having awful side effects from it: upset stomach, depression, terrible low back pain, prickly hands/feet, shortness of breath, fatigue, just not myself at all .... so I couldn't stand it any longer and cut back my dosage to wean. Called my dr 3 days ago but haven't heard back yet. Diomax improved my head pain somewhat. I'm sure the dr will just want to try another drug....
My question is this. I only seem to have ONE symptom of chiari and that is the pressure in my head that gives me terrible throbbing pain when I stand up, lean over, bend down, crawl around with my kids etc. My head throbs when I turn my head a certain way too and i feel some pain on the back/side of my neck when i turn it far--like a soreness feeling.
Does my throbbing head sound like chiari? Is there anything else this could be? I have no other issues.... and this all came about 8 mos ago. Does anyone else have this throbbing?
I don't know what to do.. there are drs around who are "familiar" with chiari, but I feel I need someone who is more than familiar if chiari is indeed what is causing my throbbing pain. I'm so upset by this....
Thanks for reading if you got this far.
COMMUNITY LEADER
HI...I have never heard that POTS would go away, if u have something similar that may go away on it's own.
Yes, most of the Chiari specialists r NS's....and many do have a NL that work with them...if they r far from u and u have to travel , yes u will want a NL in ur own area...HOWEVER- u may not find one that understands chiari...and u may do better to educate ur PCP....I did and it works great for me and it is a lower co-pay : )
"selma"
A lot of specialists I'm finding are neurosurgeons. I wasn't sure I should get a neurosurgeon, but a neurologist. ??? But I can't find a neurologist that is a specialist in chiari. I am so confused...
One of my mri's checked the fluid flow in my head and the flow was fine, so I don't think I have the intercranial hypertension. I looked up POTS and it said it could come about after a viral infection. I was violently, and I do mean violently!!! ill at the end of december, and my head throbbing pain began a couple weeks later. So maybe..... though I read it usually just goes away on its own. Googling really scares me though. :/
I have journaled some in the last 8 mos and my only symptom is always "just" the throbbing head pain/pressure upon bending, leaning, crawling, getting out of bed. I was trying to see if this type of throbbing is common with chiarians..
thank you for your response. I appreciate it.
One of my mri's checked the fluid flow in my head and the flow was fine, so I don't think I have the intercranial hypertension. I looked up POTS and it said it could come about after a viral infection. I was violently, and I do mean violently!!! ill at the end of december, and my head throbbing pain began a couple weeks later. So maybe..... though I read it usually just goes away on its own. Googling really scares me though. :/
I have journaled some in the last 8 mos and my only symptom is always "just" the throbbing head pain/pressure upon bending, leaning, crawling, getting out of bed. I was trying to see if this type of throbbing is common with chiarians..
thank you for your response. I appreciate it.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
U r soooooo right u need a Dr that is well experienced with chiari...we do have a list of Drs compiled by the members here...it is not meant as a referral , so u do need to research the drs but it is easier to have the names to start with.-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
There r a few Chiari related conditions that may be causing ur issues one is ICP intera cranial hypertension....excess CSF fluid and could be y ur Dr tried the Diamox it is used for ICP .
The other possibility is POTS- if u can , take ur BP when u stand , sit, lie down and see if u have positional changes...even if ur HA's change with that...
Not everyone with Chiari will have all the symptoms, or all of them at the same time, it is a condition where the symptoms cycle....so keeping a journal may help too.
"selma"
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