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Cluster Headache Help and Support >> Getting to Know Ya >> 1st POST , BC Canada A few questions . http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1217966848 Message started by kelly toth on Aug 5th, 2008 at 4:07pm |
Title: 1st POST , BC Canada A few questions . Post by kelly toth on Aug 5th, 2008 at 4:07pm
Finally somewhere people know what I'm going through. My headaches started about 5 years ago, went to neurologist, diagnosed as CH . First episode lasted about 6 weeks, with about a year and a half lapse, and then same thing another 4-6 weeks of 2 attacks a day. Went another 2 years currently into my 3rd week . First attacks I was prescribed Zomig rapimelt, worked once or twice and then it was a trip to the ER followed by an IV of toridol and something else ? This time I have been put on Verapimil and prednisone, which hasnt done anything. However I have also got my o2 which has been a lifesaver however over the long weekend I ran out and had to make 3 more trips to the ER. It's really frustrating having to put my life on hold, as well as try and explain myself to different people in the ER while I'm hunched over holding my head moaning ! I'm sure you all can relate. I am looking for some other people in Canada who suffer because I have a few questions about the oxygen and the best place to get it . I'm currently paying 30 dollars for one 650l tank and I have 2 in place, I'm refilling every 3 days, unfortuanately I have no extended coverage so it is getting a bit pricey, as well as the mask I have has holes in it which I plug of on my own as much as possible to get full effect of oxygen, I'm currently writing this at work with 3 hrs sleep because of my late night attack and trip to the ER, so if I don't make sense thats why ! Anyways I'm just glad there's a place where we can share ideas and treatments, it's also really sad that I'm made to feel guilty by the nurses at the hospital for actually having to come in for an actual emergency, they talk to me like I'm having a little headache or something, very frustrating ! Also tried migranal nasal spray at onset, worked 1st time just toning it down from 10 - 7 but after that no avail.
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Title: Re: 1st POST , BC Canada A few questions . Post by midwestbeth on Aug 5th, 2008 at 6:29pm
Hi Kelly and welcome. There are several people on the board from Canada and I'm sure they will be along to give advice on the 02.
How long have you been on the prednisone and verap and at what dosages? It does take some time to build up in the system and can become more effective over time. Sorry to hear you are in pain right now. ER's can be very frustrating.........they do not understand the pain.........we do!! Hope the beast leaves you soon!! PF wishes to you Beth |
Title: Re: 1st POST , BC Canada A few questions . Post by kelly toth on Aug 5th, 2008 at 6:45pm
Hi thanks for the reply , I started on the prednisone at 50mg a day for 6 days and I'm currently down to 30mg a day weaning off and 1 verapamil per day Im not sure the mg but it's 1 pill and it's the SR but I've noticed that I take all my pills in the morning and I do not experiencean attack until 1-2 am and then usually anywhere between 5-8 am never after i take the pills ! I wonder if theres any corelation with that , tonight I'm going to try and take closer to bedtime .
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Title: Re: 1st POST , BC Canada A few questions . Post by mezza on Aug 5th, 2008 at 6:51pm
1 pill of verapamil whether its 180 mg or 240 or whatever may not be enough to get you painfree. It takes many anwhere from 480 on up for many to get relief. I take up to 660 mg before my hits stop. Takes a good week or two to get painfree. I'd still get shadows but no real HA's of significance on this dose. For the shadows a couple of strong cups or coffee, or a red bull or an excedrin migraine would kill it- Never really had to take a trex or zomig after the verap started working
Sounds like you need to revisit your doctor and talk about treatment options. While in cycle, I visited my neuro every two weeks till we were sure cycle was over and tapering off the meds begun- There are tons of good links on the left which will help you gain info on effective meds and dosages of various prevents Good luck- hoping you get some painfree time Kelly |
Title: Re: 1st POST , BC Canada A few questions . Post by kelly toth on Aug 5th, 2008 at 7:14pm
Wow I'm impressed on how supportive you guys are ! I just recently moved back to where I'm living now and unfortunately the health care system and getting a GP here is very hard as none are taking on new patients so anytime I need a DR I have to visit a walk in clinic and havent been able to set up a good relationship with a DR yet. I'm optimistic that the O2 alone will get me through the next little while, as I have never had the episodes last more than 6 weeks at a time (fngers crossed) I'm just getting worn out at work with the lack of sleep and the anticipation of the next attack. I don't know about anybody else but I almost feel like I'm being judged by people as well. It's almost like people think I'm exxagerating it or something. Anyways I'm glad I found this site.
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Title: Re: 1st POST , BC Canada A few questions . Post by barry_sword on Aug 5th, 2008 at 8:37pm
Hi Kelly and welcome. Just a friendly hello from another CH sufferer. (And a Canadian)
Barry :) |
Title: Re: 1st POST , BC Canada A few questions . Post by dougW on Aug 5th, 2008 at 9:15pm
Kelly:
I use Vital-Aire. Great service. The M-tank runs me about $30 per fill, yep I go through 3 or more a week. PM me if I can help at all. Doug Wright Nanaimo, BC |
Title: Re: 1st POST , BC Canada A few questions . Post by barry_sword on Aug 6th, 2008 at 7:06am
Hi Kelly. With regards to the o2, I get mine from Oxygen Homecare located about 2km's from my house. I pay $37.00 for the larger "M" tank and $27.00 for each of the smaller portable tanks, one for my work place, and one for my car. o2 is never out of my sight. My wife Angie's insurance covers a good part of it which is a big help.
I have only once gone to the ER due to a CH and will not do that again. I know what you mean by the staff making you feel like one is wasting their time with this "headache" that they have no clue what it is. My attack was over by the time I arrived but the ER doctor said he has CH's and I said "finally, someone at the hospital who understands" until he said "I take Alkaselzer, pop-pop-fizz-fizz and my headache is gone in a couple of minutes" I could not get out of there fast enough. This doc did not have a clue about CH's. He stuck the o2 tubes up my nose and gave me an IV but then asked me twice how my "migrane was doing" :-? I am out of cycle right now, but when my last cycle started I was put on a Prednisone taper and 360mg Verapamil. The Pred stopped my hits right away but the Verapamil was not enough. I printed off info from the left and asked my neuro for a higher dose of Verapamil (480mg) and would like to try the o2. He agreed with both requests and I could not believe how quick the o2 stopped an oncoming hit, and no CH hangover. When the beast returns, I plan on not using Prednisone, but just using o2 and Verapamil. We just had a discussion on the med specific board with regards to substained release Verapamil. I will not try it, but stay with what worked for me last time.. Sorry for the long story, but just want to help in any way I can. If we lived closer together, maybe I could help you with the o2. You do have the non-rebreather mask right? I am going to look into getting better masks and if I can get them I will send you one as they are a better delivery of the o2. Take care my friend and let me know if there is anything I can do or just a shoulder to lean on I am there. PFNAD Barry |
Title: Re: 1st POST , BC Canada A few questions . Post by Guiseppi on Aug 6th, 2008 at 10:25am
Welcome to the nut house, glad you found us! You've been given a lot of reading to work on, you'll find knowledge is your best ally. Most of us have found the best results occur when we educate ourselves, and assist our physician in crafting our treatment. Due to the relative rarity of this condition, most doctors don't deal with enough of us to have a solid undertsanding of the numerous treatment options available.
Good call on plugging the holes on your mask, pure 02 to the lungs is absolutely critical in making it an effective treatment. You need to score a "non re breather" mask to replace the junk they gave you! ;) My only other suggestion is to try melatonin. An over the counter supplement available at health food and vitamin stores. Try 3-6 mg at bed time, and gradually increase the doseage. Many can avoid the nite time hits using this, sound like your getting hit pretty hard in the dark hours. Read like a mad man and keep asking questions, you're not alone anymore! Guiseppi |
Title: Re: 1st POST , BC Canada A few questions . Post by Jean on Aug 6th, 2008 at 10:32am
Hi Kelly!
A warm welcome to you! Hope you are pain free soon! Take care, Jeannie |
Title: Re: 1st POST , BC Canada A few questions . Post by bluesunshine on Aug 7th, 2008 at 12:57am
hello kelly,
For the early night time hits, I would suggest to do a search about melatonin, it has helped many of us, including me. Good that the O2 work well for you. O2 in QC is 20$ for an E tank(650L)-from VitalAir (and a M-tank refill is only 30$ in BC...I should check that). May I suggest to try zomig nasal spray (ask for a sample from your doc or neuro)or imitrex injectable. The route of administration makes a big difference. Zomig RM work well for me. I found that imitrex inj. or zomig nasal is a "step above" more effective to shut down that bastard. By the way, have you seen a neuro (and got a CT scan done). Verapamil and depakote never did it for me. I've never tried the prednisone taper since my cycle last for one month. Remember that there are profilactic drugs to "prevent" the onset of an attack (verapamil depakote, topamax and all that...) and there is abortive (triptan like imitrex and many others, O2) : to ways to control the CH (mmmm...is there a third one I forgot?). And hang on my friend, when you see that nobody cares about your condition , think we're just beside you ,understanding you; you are not alone. blue |
Title: Re: 1st POST , BC Canada A few questions . Post by kelly toth on Aug 7th, 2008 at 1:14am
Good to read all the info, I took it upon myself to increase my verapalim fom 120 SR to 240 and instead of taking first thing in the morning, I took before bed because I get the 2AM one every night , guess what ! Nothing last night slept like a baby and nothing today so 2 days attack free (fingers crossed) as I'm heading to bed right now but I have the O2 right beside my bed. Anyways I'll keep all of you posted ! Had a day off today fom work and actually got to enjoy the Okanagan and do some wakeboarding , and went to the gym. Things Ive put on hold because of the anticipation of my attacks !
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Title: Re: 1st POST , BC Canada A few questions . Post by ClusterChuck on Aug 7th, 2008 at 1:47am
I know I may sound like I am on your doctor's payroll, but you should be careful about upping your meds, without their knowledge. Maybe just a phone call to his/her office, and get a verbal ok to do so.
Verapamil is a blood pressure lowering medication. If you do nothing else, go to your local department store, or drug store, and check your blood pressure. Some people have a problem with verapamil lowering your blood pressure, to a dangerous level. HOPEFULLY you won't have any problems. But, CONGRATS on a PF night! Those are treasured with chronics like me. Chuck |
Title: Re: 1st POST , BC Canada A few questions . Post by Karl on Aug 7th, 2008 at 5:48am
first welcome;
I agree with chuck all the way, please check with the Dr before messing around with medication. glad you found us , please feel free to vent if needed. I do Karl |
Title: Re: 1st POST , BC Canada A few questions . Post by barry_sword on Aug 7th, 2008 at 6:44am
Kelly, like Chuck and Karl said, do not increase or stop or change your meds without talking to your doc. I have a blood pressure machine at home to keep track of my BP while taking Verapamil.
See Kelly, we just care about you buddy! ;) So cranked to hear you are having some PF time and hope it continues for you forever!!! [smiley=me&mb.gif] |
Title: Re: 1st POST , BC Canada A few questions . Post by kelly toth on Aug 7th, 2008 at 10:59am
Morning All ! Spoke too soon ! Woke up about 2 am slapped the O2 on for about 15 mins, and back to sleep . Way better than carting myself to the ER . As for upping my medication I know it's a bit risky, however I know for a fact that my blood pressure is fine. I've been into weightlifting for about 10 years now and I'm actually in really good physical shape, but still I know I should be checking with the doc, however it seems people in here know more about this. Anyways off to work !
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Title: Re: 1st POST , BC Canada A few questions . Post by kelly toth on Aug 8th, 2008 at 12:02pm
Just thought I'd post an update, No attacks all day yesterday, woke up in the middle of the night with the shadow of one, went to the washroom prior to putting my O2 on and to my surprise it actually ceased ! Could be a sign that they are starting to taper off ! It's been about 4 weeks which is usually the time frame. Anyways feeling kind of glum today ! Not sure if it's the prednisone or verapimil or just my own emotional instability ! LOL anyways hope everyone has a PFD !
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Title: Re: 1st POST , BC Canada A few questions . Post by barry_sword on Aug 8th, 2008 at 12:25pm
Hey Kelly, so good to hear you had a PF day yesterday and let's hope your cycle is ending. If not, keep that o2 full and stay on your meds.
If there is anything I can do to help let me know. Barry :) |
Title: Re: 1st POST , BC Canada A few questions . Post by kelly toth on Aug 8th, 2008 at 12:31pm
Thanks Barry I appreciate it !
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Title: Re: 1st POST , BC Canada A few questions . Post by barry_sword on Aug 8th, 2008 at 12:34pm
Your welcome. I must get back to work, just home for lunch.
PF wishes buddy! [smiley=thumbsup.gif] |
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