no help with pain " ice-pick migraines" worse after crainotomy

[brainpain]

my migraines are taking over my life. i was diagnosed with ice-pick migraines 4yrs ago,by a headache speclist. i had a crainotomy 2yrs ago for pituitary tumor. my tumor is all gone. my migraines have gotten worse in the past year. my migraines have gotten to the point i have lost vision in left eye about a min. they have gotten so bad i throw up and get weak and dizzy. my eye waters and my temple gets so sore. i have to sit in the dark and no noise, perfume . i have went to my doctor with my eye watering and swelled from the pain. my doctor just rolls her eyes at me and tells me to go home and sleep. she has the report from the headache speclist, but refuses to give me any help. i had to go to the er because she wouldent help me. i struggled for 3 days and couldent take it anymore.the pain has taken over my life.i have headaches daily and my kids are sufferring because i cant do alot with them.i need help with this. how do i find a doctor to help me? i dont do drugs or look like a druggie, but the doctors treat me like i am. i am in pain and just want to have a life and play with my kids.  please give me advice on what to do.

[brainpain]

i do have yearly mri's . i had a mri last month and it was normal.i had the mri with and without contrast. i talked to my neurosurgon about the change in headaches and he told me he just does sugery. i got to keep my mri films to take with me to my appoment. for now all i can do is tolrate the pain till i just cant anymore and go to the er for help.i know there is a big change in my migraines.i havent had any test done to find the problem. i will take a migraine diary to my appoment and not shut up till i get some help.i do sit in the dark and in a quiet room. this is not fair to my kids. i have tryed to get an earlier appoment and thaats the only one i can get,so im stuck waiting. thanks for all the info and your replys.

[Tuckamore]

The term "cluster" is usually associated with headache but they certainly can become cluster migraines with migraine symptoms. However you will usually hear the term cluster headaches. They typically last a week to 12 months and than disappear for as long as 6-12 months. But that is typical and every one's episodic symptoms can be different or the periods can be longer or shorter. They are extremely painful.

They usually occur without warning .Some of the signs and symptoms are as you describe, excruciating pain generally located in or around the eye, but may radiate to other areas of the face, head, neck and shoulders and one sided pain. My husband too experienced these for about four months with remission for about six months. They resurfaced for about two months and went away some 8 years ago and have not returned.

Some other symptoms include, restlessness and rocking back and forth along with redness in one eye with reduced pupil size and excessive tearing is are usual symptoms. It is often described as a hot poker being stuck in the eye like sharp, burning and penetrating pain.

Treatments vary widely depending on your symptoms and the physican. They can range for anti-nausea mediation, oxygen, nasal sprays to surgical intervention. The good news in there is treatment. But first you need a correct diagnosis. Your symptoms no longer sound like ice-pike migraines.

I agree with Sandee, I don't think you should wait six-months to be seen by a neuro. There must be some way to get in sooner. Can your PCP help speed things up for you. Mine is always able to do that. If your PCP is not willing to do that or do some preparatory testing like CT scans I would seek out another PCP that will offer you some relief.

Please let us know how you are doing. I will be watching with interest for your updates. Good luck to you and take care, Tuck

[sandee1818]

I am wondering if you have had any test done to see if your having any past problems you have had come back. When a headache gets as intense as you describe it can be a signal as something wrong and with having a tumor in the past I would think that your doctor would keep a close eye on that and your pain. Cluster migraines are just one type of several different migraines. My husband has them and he will get dizzy and throw up and the only thing that helps is for him to sleep in a dark quiet room until it subsides. he will not take meds for it. There are things and smells that will trigger migraines even food.
I would insist on having a CT scan done again to see if your having any kind of problems like you have had in the past.

[brainpain]

when my icepick migraines first started it was just intense sharp ,throbing pain. my migraines wasent so bad,pain come and go. as time went on they started lasting for days. for the past year its non stop. the pain is worse and changing. my migraines have been constant every day for almost a year. they have changed to a unbearable pain. the changes i have now are my pain is a 10 + and my left eye and temple sometimes swells and waters. the pain went from sharp pricks to pain i cant stan .i cant be still my husband tells me i rock back and forth and squezze and rub my hands together. i feel terrable and stay tired and i get very upset " hatefull-moody"  i went to another er and was told it sounds like cluster migraines.the er doc told me to see a neuro. i have an app with one already in june, theres no neuro where i live. so i will have to wait till june to find out whats going on . his office is 60 + miles from where i live. what is cluster migraines? could my icepick migraines changed into cluster migraines? is cluster migraines treatable? just a little worried now. thanks for your replys.

[nick30]

I really sympathise with you. I knew a kid at school who had migraines a lot. he got hassled a lot coz no one believed him. It is alot like chronic pain in that way. why does no one understand that healthy looking people can be unwell behind the facade? for a doctor though it's really unforgivable to treat you this way.
I'm not sure why you think your dr's treat u like a druggie. narcotics rarely give help to migraine sufferers anyway and as tuck said, they don't work fast enough to help. when i get headaches I have found the only thing that helps is nurofen(ibuprofen)and narcotics actually feel like they make things worse(for me they feel like my brain is swelling up a bit).
maybe a male dr would be more understanding (women can be harsh on other women). i'll probably cop a lot of flak for that last comment. I don't know much about migraines(you've probably allready guessed that) but maybe your symptoms would lessen with improvements in general health and wellbeing. My pain issues have subsided somewhat after months of eating healthily and subsequent weight loss.  
sorry i can't give you anything specific, i'm sure others will,
good luck
Nick

[Tuckamore]

Hi Brainpain,

I am so sorry to hear about your migraines. If I understand "ice-pick migraines" they come and go very suddenly and last for just a few seconds. However those "seconds" are extreme, severe disabling pain.

It is also my understanding that they are very difficult to treat as by the time any medication would begin to work they are gone. Indocin seems to be the drug of choice if any are prescribed. Is my information correct?

I take it the physican that diagnosed your headaches does not provide follow-up treatment and medications. If you feel that you need treatment that you are not getting from your PCP than it is time to search for another PCP. Any physician that dismissed my pain or symptoms would be looking for a different patient to charge $120.00. We should never forget that physicians are service providers. Really no different than any other service provider. If you are not satisfied with the treatment (service) you receive from a physicians than fire him. There are health care practitioners that will listen to you and at least attempt to explain the reason(s) for their decisions of treatment, or in your case, lack of treatment. At the very least you deserve anwsers and not a dismissal.

Good luck to you. Please let us know how you are doing. I will look forward to your updates. Take Care, Tuck