I have had cluster headaches for almost 16 yrs...the pain never has gone away even for a day. I have tried about every drug possible. They finally put me on fentanyl from 110 mg down to 12mg and now off it for a month. I still am taking vicodon 3 times a day and down from 6 a day. The pain level stays at a 7 all the time and will shoot to a 10 off and on. I take 300 mg of toprol plus 100 mg of procardia a day...my b/p can shoot from 200/119 and back to 130/80 all the time. I see a pain clinic Dr. and he is trying to get me off the pain meds, but the pain now is going up. I do not know what to do.
HI I am a neurologist and can try to answer your question
Well you are offline, so I am going to leave my answer, please read what I wrote and if you are satisfied with my answer, hit the accept button as that is how I am compensated for my efforts. thank you. If you have questions please get back to me and I will be back to answer your questions, even if you hit the accept button. ok?
So I am going to be honest with you, this is an online relationship and there is no doctor-patient relationship, it is only for information purposes. Your first statement that you have cluster headaches and that they are daily for 16 years doesn't follow the criteria for cluster headache. I am going to paste in the international criteria for headache, and I would ask that you look at it closely, there was a lot of time put into this, because the theory here is that each headache type is different, and needs specific treatment, without the correct diagnosis, you have nothing and you won't be effectively treated.
If there is one thing I want to get to you in this writing, it is that if you have headaches, the only one that can really help you is yourself. So spend some time and work on this project.
An important point, and I am sure you have been told, is you need to keep a very specific headache calendar that gives all the parameters of each headache,when it starts, end, what makes it worse, what makes it better ,where on your head, squeezing, pounding, nausea, visual spectra or scintillation scotomata, aura, all of that is very important before you go to the classification.
Now there are many treatments you have not listed like Botox, nasal Oxygen, viscous lidocaine, cGTP inhibitors,the list goes on and on, so get back to me with questions as I want to help you with your 16 year history if I can. If you have any MRI scan reports or any neurologic studies like an eeg or polysomnogram
Please also hit the accept button if you want to continue and you feel I have answered your question. Please look at classification for paroxysmal hemicrania or chronic daily headache (CDH) and see if it matches up. ok? thanks XX. XXXXX X.
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Mayo clinic did say it was hemicarna headache. As for the pain it has been on the left side of my head at all times. I have major trouble with sleeping thru the night and they put me on helican twice at h.s. which I'm still awake most of the night. Since I'm going off pain meds the headache is getting worse. I just don't know what to do anymore. I can go thru my papers and tell you all the drugs that have been tried. I have had CT scans, MRI's and MRA's thru out the years. It has been about 6 yrs since I had any new ones...last one showed alot of grey matter in the brain if this is any help. I just started where the lt. side of my nose runs all the time. When the pain goes to a 10...I get very sick and vomit with that. I just don't want to go back to where I was 16 yrs. ago...I thought about ending my life because I'm so sick of pain. I can't take alvee, advil, or asprin due to having bleeding ulcers. Believe me...life is so inportant to me...our 1st grandbaby was born 12-25-11 and I want to enjoy many years with him...he is such a special baby and we almost lost him and our daughter both during labor. We also have 3 other grandkids...my son married a girl who gave us 3 special grandkids into our lifes and I don't want to miss out on them growing up. I just don't know where to turn. I live in Illinois about 100 miles west of Chicago...my daughter lives in Chicago, so if you would have any idea who I should see, I can go stay with them.
HI I was going to ask you if you have tried nasal oxygen therapy, using a nasal cannula at 6-10 liters/min (high rate), or viscous lidocaine that you put on a nasal swab (long cue tip) and put on your nasal mucosa on the side of the nose that is running or the side of the head that is effected. Both of those treatments have been effective with my cluster patients.
Since you live near Chicago, my suggestion would be the Diamond Headache Clinic, run by Seymour Diamond MD and his wife. They have one of the most famous clinics in the world. and they are close. He is the one giving expert lectures at the academy of neurology annual meetings, so I would say it is worth the effort. There are also some new experimental migraine meds that may be effective in paroxysmal hemicrania or even cluster, they are cGTP inhibitors. cGTP is a new substance that has been identified in the brains of migraine patients and may be the initiator in the migraine/vascular cascade, so an inhibitor may be effective if used early on. I am attaching the webpage on the diamond clinic so you can review it. If there is anything else I can do, please just respond. If you feel I answered your question, please hit the accept button as that is how I am compensated for my work. thank you.. Dr. Frank T.