mark m

Not sure if that has to do with the clusters coming early but the new VA Neurologist put me on prednisone and verapamil and knocked the clusters down to shadows only within a day. I am slowly weening off the prednisone He started it with 10 pills then 9 and 8 and so on. I am guessing it is so the verapamil builds up in my system? The prednisone are 10MG each and the verapamil are 240 mg. Side effects are messed up sleeping stomach issues and I feel like eating all the time. Also I am kind of tired most of the day and sometimes I feel in general yucky just not right but much better then pain. I will report again after I get done with the verapamil. I am not sure if ths would have worked if I got the medications much later though. I started getting clusters and within 7 days was on the prednisone and verapamil.

Thanks for your reply I really don't like feeling like I am the only one with bad experiences due to medications. So I appreciate your response.

Back in February of this year my neurologists decided to try me on emgality at 300 mg each month for 3 months. The first month I took the medication I had zero migraines at first then as the weeks went by I started getting cluster headaches totally off season for me since my cluster headaches are every three years for approximately 18 weeks and I had them last year. The clusters brought on by this drug were not normal for me in other ways too. My normal clusters hit hard level 10 last about an hour without medication (imitrex) and I get them multiple times over the course of each day and night. yet the ones caused by the emgality were approximately 2 per day (24 hours) and rarely passed a 5 on the pain scale. after the first time I took it the second month not realizing it was in fact the drug due to me having a root canal done in the first month. The second month the clusters got worse right after taking the second dose and I noticed other side effects such as eye strain, joint pain all over and some stomach issues. as the month progressed I noticed the clusters got less intense and then I took the third dose and it got worse again only this time my migraines were normal as before I tried this medication so now instead of helping at all it just made life worse for me. So in closing I would not recommend this drug. Hope this helps someone, Mark

OK thank you Brain- at first it was due to an infection then it was caused by inflammation. I had the second appointment yesterday to finish the root canal and I am still feeling cluster type pain but I am going to take some aleve prior to starting my day today to see if it helps. I will donate next month, I seem to have missed one of my credit card payments last month so I have to catch up now.

It appears they are slowly going away, I am having what I think is called shadow pains but no full on attacks now. Last night I was not woken up at all in pain. I am also on the last day of the antibiotics. I have not needed imitrex since Tuesday night. As for the emgality I have not had a migraine since the day after I took the emgality and my normal (for me) cluster register at a 10 + in painlevel but none reached beyond a 5 this time around also I normally have 4 or 5 per 24 hour period this time I never had more then 2. SO I may be a bit quick on the good for the emgality but so far so good. I still have slight constant pressure type pain daily but I have had thet for many years. My neurologist told me I should be the poster child for headaches. He is a great doctor for us with headaches of any kind. He even gave me his private email to send him things from research I find on headaches. Again thank you all very much for the help. If there is a way to donate to the site please let me know.

Thanks for the great answers!

first things first I have always had clusters every three years, January 2019 was my last time so I should not have them again for three years from then. Recently I had a root canal upper right hand side which is the same side as my clusters. Now its infected and I am having cluster headaches because of it. Has anyone here experienced anything like this? The pain pills the dentist prescribed does not help I am on antibiotics too. But oxygen and imitrex do take the pain away. I was also put on emgality prior to the dental work. Anyone?

my recent test results : serum 25-oh-d results >120.0 H PSA>are normal Not sure what this means?

I have tried verapamil but the doctor took me off it before trying a higher dose, No clue why. The only time imitrex has not worked is when I had none at home and the pain got to suicide level by the time I got to the ER and they gave me a dose but I have no clue how much they gave me. Up until a few years ago my clusters were every 3 years but last summer I flew to Boston then to Texas then back to California and the flying caused a short attack that lasted 6 weeks. Now i am in my regular cluster time except they usually laster 12 weeks and I am into the 14th week. I have no idea why they are so bad this time or why I am having pain in places I never had pain in the past such as in my neck and in the roof of my mouth. I will drink more water and get some B complex as you suggested. Thanks, Mark PS and benadryl.

The lithium 300 mg 1 daily took away 95% of the clusters for about 8 days and then started getting a lot of shadows and now I am back to full pain and my clusters do not react to Oxygen at all and a shot of imitrex does nothing so I was in the ER last night and they gave me a combo of imitrex, dilaudid, zofran & benadryl with saline. I was there for 4 hours and when I left I still had pain in my face. Here it is Sunday I woke up with pain in my face and within 2 hours was at pain level 4 and I put ice on my face while breathing oxygen and it slowly got better. I requested to have the blood tests and have heard nothing yet. I am switching to a different VA hospital asap as I am very unhappy with the Sacramento Mather VA.

For those who use turmeric: https://www.healthline.com/nutrition/turmeric-and-black-pepper

I am on the D regiment yet this last week has been pure hell every cluster comes on fast and goes right to full pain in seconds, imitrex shot stopped one yesterday then it came right back 10 minutes later. I was at the ER when they gave me the imitrex then they gave me another shot of something else. since then I have been having shadows and I took my first Lithium with my last imitrex pill this morning at the onset of another cluster. If I was alone I would have taken my own life last night. I am not a quitter and would not leave my wife alone . Seems the vitamin d regiment and oxygen are useless at this point. I am at a total loss here. Appetite is almost none existent.

Yes I break into a severe sweating during the cluster attack

Thank you for your answer-sometimes even after reading others stories it still feels like I am alone in all of this. Thanks again for helping to not feel this way.

I have to say this: As some of you have read I have both migraine and cluster headaches. So this is my recent report: I am on the vitamin D regiment and have been for a few years however in the past couple of years my clusters have changed as I said before but this year is the worst yet. I am now experiencing clusters then due to lack of sleep I wake up with a migraine ,on top of this my clusters are now with severe light sensitivity. Also last night I started with a cluster around 8 pm I am out of imitrex so I did the oxygen on high for quite some time then went to bed even though I still had pain in my head. approximately midnight I woke up in agony and my wife took me to the ER. The ER gave me a shot of imitrex and toradol and sent me home. I went home and went to bed. I have had pain in my left temple all day. I would try other things but being me I have no idea where or how to get such things.I really am tired of these damn things. My email is mark-mitch@hotmail.com if anyone is interested