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Cluster Headache Help and Support >> Getting to Know Ya >> Hello http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1269111038 Message started by Megan102 on Mar 20th, 2010 at 2:50pm |
Title: Hello Post by Megan102 on Mar 20th, 2010 at 2:50pm
Hello. I do not suffer from ch, but my husband does. I have been reading here for a few weeks now and want to thank you for all the information here.
Pete is 53 years old. He has been a heavy smoker since his early teens and he has been a beer drinker daily for several years. He is 5’7” and weighs 130 pounds. His history. This is his second cycle. The first started in the fall of 2006 and lasted until February 2007. We’re kind of hazy on the details, but the headaches probably weren’t as severe as they are this round or we would remember better. We knew they were cluster headaches then because his father had been diagnosed with them over 20 years ago. Bottom line, his father just suffered through them so we didn’t learn much about the ch’s. Pete wasn’t diagnosed with ch’s, but he did see a neurologist towards the end of the cycle and did get an MRI that ruled out tumors, etc. He was prescribed a nerve blocker, but we really don’t remember him taking it for very long. Looking back, we think it was just the end of his cycle. This cycle started the beginning of February, but he didn’t recognize it or chose not to. He’s got to be in really bad shape before he’ll go to a dr. For the first couple of weeks it was heavy shadows or low level ha’s that he took Excedrin for. He was living with it and I didn’t even know it was going on. UNTIL he came home from work one night and popped his usual beer. Major ha! The worst of it lasted probably 45 minutes. Shadows the next day, home again and popped open a beer. SSDD! Third times a charm and he realized his beer drinking days were over. Quit drinking, but the headaches were getting more severe and more frequent. First dr’s visit was 2-23. He was diagnosed with cluster ha’s. He was prescribed Midrin Caps for pain and Topomax 50mg, twice a day. No help there. Next visit was 3-1. He was prescribed a Medrol Dose Pak, hydrocodone and continues with the Topomax. He started taking the hydrocodone every four hours hoping to help with the pain because he wasn’t getting any relief if he waited for the pain to hit. His next dr visit was. 3-5. He was basically pf for 2 days and then he got hit again, this time about one hour after taking the hydrocodone as a preventative. Got into the dr that afternoon. By this time I had found this site and had been reading as much as I could. I went with him this time. The dr put the higher doses of prednisone together with the pf days and prescribed prednisone 20mg 3x for 3 days, tapering off so he would be off of it on day 12. He also started him on 10mg Inderal 2x and started tapering him off of Topmax. I knew from reading that the Topmax wasn’t really given a fair shot, but I was concerned about the “stupid” side effects. He was kind of “out of it” and twice really abused his meds while having an attack. I know Inderal is not the first choice, but this dr (his GP) is really concerned with side effects and wanted to go this route. He wouldn’t prescribe Imitrex for the same reason. BUT, he did prescribe O2! The prescription wasn’t what I had read about, but I also read the important thing was to get the prescription and modify it from there. Surprisingly the 7 lpm for 8 minutes from the machine that doesn’t produce 100% O2 worked. It continues to work, but I have all the information we need to modify it if we need to. He does have a tank for mobility and that is where we would start. So he now has an abortive that is working and was doing fairly well until day 11 of the Prednisone prescription. He had 6 attacks in one day vs the one or two he was having right after he went to bed. Thankfully that has been his worst day. He has shadows and his worst pain has been 4 or 5 with the O2, but more like 1 or 2 times a day.. The visit he had on 3-17 was an appointment scheduled for 2 weeks out from the last visit. He increased the Inderal to 10mg 3x to finish this prescription and wrote the next one for 20mg 2x. He got a head cold a couple of days ago which is complicating things, but bottom line, the O2 aborts and he is “only” getting a couple of hits a day. The only meds he is on is the Inderal and the O2 to abort. He has an appointment with a neurologist next Wednesday. Pete is not much of a reader and virtually never uses a computer so I am the researcher, but he is involved in his care. He is keeping a diary and we realize how important this is. We're taking all I’ve read to heart and this will basically be an interview from our standpoint. If we don’t like what we hear we will ask for another referral. Wish us luck that this guy knows his stuff or is at least willing to listen. Megan |
Title: Re: Hello Post by bejeeber on Mar 20th, 2010 at 6:30pm
Hey Megan, thanks for the report. It's good to see that you're doing a ton of researching here.
Sorry to hear that the first prescriptions were especially stoopid (hydrocodone? bleh!), but happy to hear that the O2 is working. I have hatched a casual theory (may be a crackpot one, people, call me out on it if so) that smaller sized persons can get a better result with the lower liter flows, due to their smaller respiratory systems, so they may have a bit of an advantage there..... |
Title: Re: Hello Post by neuropath on Mar 21st, 2010 at 7:47am
Pete is very lucky to have you! Although you guys were off to a slightly bumpy start you seem to have gotten your arsenal together very quickly.
I am sure he has learned now that alcohol is a big no no during episodes for virtually all of us. Great to hear that you are already set up with O2 and ready to up the flow rate "caliber" if you have to. Topamax (as many other prevents) takes time to take effect. An alternative or combo you may wish to discuss with your Neuro is Verapamil, which seems to also help many around here. Many Neurologists are only trained on mainstream treatments and dont understand the complexities of CH. You seem well prepared for your appointment and should you not get the answers you are looking for, on the left of this page you can find headache specialists in your area via the Ouch website. |
Title: Re: Hello Post by Dollyhair on Mar 21st, 2010 at 7:58am
Hi Megan,
Welcome on board. I have been a sufferer for over 20 years and have always taken Verapamil as a preventative until last year when I had an ICD fitted, they took me off this and put me on a Beta Blocker for my heart condition. If your Neurologist puts your husband on Verapamil, please make sure that he has regular ECG's. From the start of this year I have used 02, 15lpm which aborts within 5-10 mins, its wonderful!! Good luck this week with the Neuro and keep us posted as to how it went. Caron |
Title: Re: Hello Post by Megan102 on Mar 21st, 2010 at 9:59am
Thanks for the replies. I know we are positioned as good as we are because of this site. I
His GP is very cautious about high doses and the Imitrex and Verapamil. He's afraid that they would cause a heart attack. At this point he's sitting in a pretty good place. Down to one hit a day - right after he falls asleep - and the O2 is doing a good job of aborting. I'm most interested in the Imitrex at this point so he has a little more freedom. Pete is a very outdoors type person and he can only take an O2 tank so far. Other than a couple of weeks in the beginning when he was totally zapped, his outlook has been good. I'm just afraid that if this interferes with his lifestyle too much for too long that he would get down. O2 would continue to be the first choice to abort. |
Title: Re: Hello Post by Kevin_M on Mar 23rd, 2010 at 7:43am Megan102 wrote on Mar 20th, 2010 at 2:50pm:
Yes Megan, hoping better from this appointment. Thank you for helping him. :) |
Title: Re: Hello Post by Megan102 on Mar 25th, 2010 at 1:54pm
Bob, do you have a different/updated # besides 1-800-643-5552. I don't think that number is what I'm looking for? :P
Yesterdays appointment didn't go real well, but he is willing to dose higher than our PCP and mentioned other prescriptions that I've seen posted here to try if an increased dose doesn't work. We'll work through him for now working towards the next level of care. I found someone close with the Physicians Finder link, called their office and the receptionist said he does treat ch patients and will refer to a headache specialist if he's unable to get results. I want to see if the 800 can be updated/changed to see if there are more options before we ask our PCP for another referral. I have a couple of questions that I'll post in the Medications, Treatments, Therapies thread. |
Title: Re: Hello Post by Bob_Johnson on Mar 25th, 2010 at 3:17pm
Sent an e-mail to you.
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