I've been lucky up to this point. I don't get headaches very often and when I do they usually only last a few minutes. But I now have had a awful headache (throbbing band around my head) and burning skin sensation that has lasted for four days straight. Is it normal for the pain to last this long?
I've got an appt with my neuro tomorrow. I hope he can do something to help. My PCP put me on tylenol with codeine and it helps but I can still barely move.
Denise
Denise, my Chiari headache is 24/7, but of varying pain levels. How did your appt go? Are feeling any relief?
Jenn
Hi Jenn,
Thanks for the reply. Nice to know I'm not alone. My appt was frustrating but I'm feeling better. The neuro has always been somewhat dismissive of my symptoms - he keeps telling me my MRI doesn't look significantly different so everything I'm feeling must be caused by something else. I try to tell him that doesn't jive with everything I've ever read on Chiari; he just smiles and changes the subject. Typical meeting with him, he kept asking about my sleep apnea and CPAP machine. Since its helped with my fatigue in the past he's convinced it must be malfunctioning. I highly doubt it but who knows. So he prescribed prednisone in case I have an inflamed nerve and referred me to my sleep doc. And told me to stay on the tylenol with codeine that my PCP had prescribed before she referred me to him :) Sometimes I feel like they just pass me around because they don't want to deal. The pill combo (on top of the Gabapentin I always take) has taken the edge off the pain but left me a total zombie. I think the headache is getting a little better but its hard to tell yet. I just finished my course of medication last night so I'm afraid it may wear off and everything will come back.
On top of that I'm worried I won't get my leave from work approved. I haven't been able to work for the last week and 1/2 because of the extreme pain, fatigue and heavy meds. My insurance co asked my neuro's office to fill out the leave paperwork. He called earlier and said he couldn't because it is outside the scope of what he provides. That I need to see an occupational physical medicine specialist to ask for an assessment. I could just scream - part of the reason I couldn't work was the heavy meds they prescribed for me. And now I'm off the meds and feeling a little bit better so I imagine a new doc is going to say that I'm fine. I'm planning on going back to work on Monday anyway unless I get worse again. But if I can't get a medical approval of my time off work I'm not sure if I can keep my job. The stress alone is bringing the headache back :)
How have you coped with the constant pain? Are you able to work?
Denise, I work full time but it’s not always easy. For me, work is a good distraction from the headache.For the pain I use arnica gel on my neck head and face, take a high quality magnesium supplement, vitamin D supp, and magnesium oil. I also wear a cervical collar because I have cranio cervical instability.
Ahh, no wonder you are ready to scream!! It’s a wonder were not all crazy by way of the “medical process” we go through!! You must be so, so, frustrated, and I am so sorry. Has anything changed with your situation yet? Any luck with the new meds or getting the paperwork? I just want to encourage you to keep going- this can feel like a long haul, for sure, but I believe that as long as you taking steps forward your situation will continue to unveil and you will arrive at the right place.
Jenn
OMG Denise when you said " I try to tell him that doesn't jive with everything I've ever read on Chiari; he just smiles and changes the subject. " I totally get that too!! My neurologist did the same thing to me this past week. It was my second visit with him and I flat out asked him "Why did you tel me surgery doesn't fix Chiari issues when everything I've researched online in support groups and research institutes says it does?" Flat out changed the subject. :-\ THen he had the nerve to make me feel bad saying that he's been doing this for 25 years blah blah blah, like I was doing something wrong in questioning him about the misinformation.
I was so upset at the way he dismissed my concerns I left the appointment crying.
I know in my case, my PCP was the one who filled out my initial intermittent FMLA paperwork but he filled it out based on what my migraines USED TO be like (which was only 1-2 days/month). When I complained at the treatment I got from him (he didn't even know I had been his patient for 3 yrs) he refused to amend the paperwork to reflect my current average of 8-10days/mo. It's a considerable difference when you're trying to keep your job. I know the struggle you're facing. I was forced to switch doctors and then go see the neurologist, the one who even though his god-complex prevents him from admitting my diagnosis, did fill out the paperwork to reflect the current number of afflictions. I can give the guy THAT much credit. haha
However, if you explain the situation to the next doctor, tell him what happened and why this is so important for you to keep your job. Hopefully, he'll fill out the forms for you. Make sure you have your records with you or have them sent over before you go so that doctor can see the history of the problems you're having so they can honestly see that you're not just making it up. (that was my own fear in going to a new dr)
DeniseH said:
Hi Jenn,
Thanks for the reply. Nice to know I'm not alone. My appt was frustrating but I'm feeling better. The neuro has always been somewhat dismissive of my symptoms - he keeps telling me my MRI doesn't look significantly different so everything I'm feeling must be caused by something else. I try to tell him that doesn't jive with everything I've ever read on Chiari; he just smiles and changes the subject. Typical meeting with him, he kept asking about my sleep apnea and CPAP machine. Since its helped with my fatigue in the past he's convinced it must be malfunctioning. I highly doubt it but who knows. So he prescribed prednisone in case I have an inflamed nerve and referred me to my sleep doc. And told me to stay on the tylenol with codeine that my PCP had prescribed before she referred me to him :) Sometimes I feel like they just pass me around because they don't want to deal. The pill combo (on top of the Gabapentin I always take) has taken the edge off the pain but left me a total zombie. I think the headache is getting a little better but its hard to tell yet. I just finished my course of medication last night so I'm afraid it may wear off and everything will come back.
On top of that I'm worried I won't get my leave from work approved. I haven't been able to work for the last week and 1/2 because of the extreme pain, fatigue and heavy meds. My insurance co asked my neuro's office to fill out the leave paperwork. He called earlier and said he couldn't because it is outside the scope of what he provides. That I need to see an occupational physical medicine specialist to ask for an assessment. I could just scream - part of the reason I couldn't work was the heavy meds they prescribed for me. And now I'm off the meds and feeling a little bit better so I imagine a new doc is going to say that I'm fine. I'm planning on going back to work on Monday anyway unless I get worse again. But if I can't get a medical approval of my time off work I'm not sure if I can keep my job. The stress alone is bringing the headache back :)
How have you coped with the constant pain? Are you able to work?
Thanks everybody for the responses. I'm feeling a little better but still battling this. I saw the sleep doc and he said my CPAP machine was working fine and I wasn't having any apneas so I can rule that out. I went to the walk in clinic last week because the pain and fatigue was so bad and I couldn't get into my PCP. They gave me a shot (Topanol or something like that), a prescription for Fioricet and antibiotics in case it was sinuses. The pain meds definitely helped but I'm trying not to take the Fioricet unless I have to. It makes me so dopey and tired I can barely get out of bed.
I don't want to go back into the neurologist unless I have to. I have an appt with my PCP on Wed to see if she can fill out the leave paperwork. And I'm waiting to hear back from the NS on whether he's willing to see me again (its been 3 years). He only agrees to appts if he thinks you're a surgical candidate.
The headaches only last for about 1/2 hour 3-4 times a day instead of constant and I've been off pain meds for 3 days so that's an improvement. The fatigue is still bad enough that I can't do anything. I was feeling pretty good yesterday so I went out shopping for a while. 20 minutes in I was so fatigued, dizzy and "foggy" that I could barely push my shopping cart. I got home, had dinner and sat with my feet up for a while and felt better. But then I went down to the basement to get something and was so tired I could barely get back up the stairs. Today my eyelids are twitching constantly and driving me crazy! I know I'm not going to be able to go back to work full time unless I can move around without feeling so awful. Thinking more and more that surgery may be the answer here but waiting to see if the NS will see me.
My headaches were 24/7 as well...my GP put me on a water pill after I had discussed the corolation between some of my really bad ones and water weight gain...It helped me soooo very much.