I know I wasn't all that regular on the boards but there might be one or two people that remember me from a few years back, well other than what I thought was an isolated episode earlier in the year (2 days at maybe a 6, was easy to cope with) I've been fighting to maintain my sanity in the past couple of months because the beast is back and I'm quite certain he brought friends, I'm lucky to get 2 days in between cycles, switching from left to right almost at whim, I lost my doctor about a year ago and am on a waiting list for a new one, OTC painkillers are helping when its mild and I have to force myself to keep going but this morning I just wanted to curl up in a ball and disappear (was at work so honestly couldn't do that, just kept taking more pills).

Anyway just thought I'd let the people who know me know that I'm back and "its" back, and if anybody could possibly suggest something that i might not have tried, and don't need a prescription for, that would be great (keep in mind after 15 years I've tried a lot and a lot has failed, which is why I still fully endorse narcotic pain killers to knock me out)

Anthony

Welcome back,

Have you read his carefully? This is one area that has changed in recent times: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Oxygen used correctly is a HUGE benefit to most of us. The amount required, varies from person to person. Some people give up and say that it "doesn't work" because they happen to need a higher flow rate than they were using.

I would urge you to really study up on this while you are searching for an effective preventative.

Marc 

first time I tried O2 they had it at 7 liters/minute, I read up on the use and the next time I landed in the hospital (which is the only way I get O2, can't have it at home) I requested 12-15 liters/minute and they set it to 15, did absolutely nothing for me (and before you ask, yes it was a non-breathing mask)

Yep, same here. 15 lpm won't do it for me.

When I discovered what 25-45 lpm does for me, my world changed. If I jump on O2 at the first hint, typical kill rate for me is 3-6 minutes and I'm pain free. The sucker never even has a chance to get bad.

Marc

Edit to add: I've getting this tremendous success using welding O2. No script required, available 7 days per week at my local auto parts store. Super cheap too.

See that's mainly my problem I never get the O2 fast enough, can't have it in my home (even if I could get a prescription for it) and the hospital is 30 minutes away, I've actually been driven to the hospital arrived still in the middle of a hit and sat in the waiting room through another one before actually seeing a doctor, they really pissed me off that day. As I've not actually had success with the O2 I honestly don't want to end up in that waiting room waiting on them to get a doctor to say "hook him up to O2" again, and its also not a feasable treatment for when I'm at work, can't exactly haul an oxygen tank to and from work with me.

Tar wrote on Oct 13^th, 2009 at 10:31am:

See that's mainly my problem I never get the O2 fast enough, can't have it in my home (even if I could get a prescription for it) and the hospital is 30 minutes away, I've actually been driven to the hospital arrived still in the middle of a hit and sat in the waiting room through another one before actually seeing a doctor, they really pissed me off that day. As I've not actually had success with the O2 I honestly don't want to end up in that waiting room waiting on them to get a doctor to say "hook him up to O2" again, and its also not a feasable treatment for when I'm at work, can't exactly haul an oxygen tank to and from work with me.

I have a large tank in my home. I have a mid sized tank in my car. I carry a small tank in shoulder bag for portability. (Looks like a video camera bag)

I use welding O2 without a prescription. Not saying that what I do will work for you. I'm simply sharing my own experience - I found a way to stop the agony that works for me.

Marc

large tank in my home is not possible (my father refuses to quit smoking or only smoke outside) have no car for a mid-size tank so all I'd be left with would be the small portable one, which in truth if it worked would be all I need, just have to refill it after every hit.

Get the welding tank, put it outside, and let your old man smoke indoors to his heart's content.

Sometimes we have to be a little creative.

Quote:

which is why I still fully endorse narcotic pain killers to knock me out)

Can you actually take enough of those to sleep through the night while in cycle??? Pretty risky isn't it?

If you change your mind about the O2 we can explain why your father smoking in another room is not a problem. I smoke and I don't go outside.

Good luck, Don

I didn't say anything about sleeping, I said "knock me out" still safer than using a frying pan to accomplish the same goal

Have you explored using energy drinks with Caffeine and Taurine (Red Bull. Monster, etc) or dosing with a few RC seeds?

Marc

For some reason Taurine makes me violently sick, have never been able to hold it down. And I have no source of RC seeds in this area, I tried looking for them before but wasn't able to find them.

Tar wrote on Oct 14^th, 2009 at 3:29am:

I didn't say anything about sleeping, I said "knock me out" still safer than using a frying pan to accomplish the same goal

Narcotics aren't the answer if you really have ch........Unless you like them.  Oxygen is the answer.

           Potter

Tar wrote on Oct 13^th, 2009 at 10:51am:

large tank in my home is not possible (my father refuses to quit smoking or only smoke outside) have no car for a mid-size tank so all I'd be left with would be the small portable one, which in truth if it worked would be all I need, just have to refill it after every hit.

Bystander smoke is one of my MAJOR triggers.  I can't imagine that smoke is helping your CH.  It might help to ask your father politely to smoke outside or in a designated area where the rest of the house doesn't have to inhale it.

Potter I know narcotics aren't the answer, but when its a choice of that or destroying my body with over the counter painkillers I don't see much option. Can you tell me that oxygen is 100% effective in all cases, or that everybody responds the same way to whatever preventative and abortive medication they have decided might work on CH?

All I'm getting at is that I have found that narcotic pain killers allow me to function during a cluster period, I don't enjoy taking them, in fact when I have them readily available I'll often refuse to take them until absolutely necessary. Their effectiveness is not really something I want to argue about on here, we should all know too well that everybody responds to different treatments in their own way.

Chad cigarette smoke has never been a trigger for me I can guarantee that one, since I've been smoking since before my CH started, and even during an active period, although I do tend to cut down at that time, only actually able to smoke between hits. I can't link any hit directly on smoking at any time in my life, there may be a contributing factor but it isn't a direct trigger, alcohol on the other hand definitely is, which is what I'm paying for now I think, had a glass with thanksgiving dinner on Sunday, but in my defense I honestly thought I was out of cycle at this point.

Ain't no guarantees in life.  I got about three hundred bucks invested in o2,mask and regulator.  Priceless.

          Potter

Tar,

I know everybody responds differently to O2 therapy, but I will say that at least 70% or more on here get great results from O2.  I have yet to try it because i'm waiting on a script, but i'm very optimistic that it will work at a HIGH flow rate.  I am in remission now so it's not a big deal at this point.

Now, I will try to clear your question in your response to Potter.  O2 "isn't" 100% all of the time, but if it cuts your total hits in half (50% effective), wouldn't it be worth it?  That's what i'm excited for.  Ultimately, it keeps your body drug-free.

Which is exactly the reason I don't run out and buy an O2 system for myself, I'm barely making ends meet at the moment, can't exactly afford that cost in my life at the moment, but I am working on getting out of the hole so who knows by next year I might be able to do it. Although I would prefer knowing that it was effective for me before actually paying out the money for it, as I said before ER trips have not been successful in the past.

Tar, you can buy an expensive or cheap systems.
It all depends on your wallet or your desperation.  I've seen regulators on Ebay as low as $15.  The non-rebreather mask they offer here is like $27.  The rest is tank rentals and refills.  My insurance doesn't cover it, but the extra money I make will go towards those tanks.  The rest of the set up you have forever.
It's cheaper than buying Imitrex or any of the other drugs with out insurance.

I can't afford it and I'm in remission are the two lamest excuses for doing nothing and suffering I have ever heard.
   Couple hundred bucks gets a lifetimelease on a welding tank,the mask is chump change and a regulator can be had for nil if ya whine a little bit.

         potter

I'm going to look into it but honestly not sure if there are any sources of tanks, masks and regulators in this area, can't order from ebay or online sites of any kind so I'm kind of screwed there. I've managed more than half my life without it so a few more months is nothing in the grand scheme of things, but yes I agree if it works for me in the long run it will be a god send and a worthwhile investment on my sanity.

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Neither of those places are even close to where I live, there's also a Medigas in Pembroke where I'd probably be able to get a decent regulator and mask but its a good 40 minute drive away and I don't drive. Thanks for checking though, will keep them in mind when i do look into it

Tar wrote on Oct 14^th, 2009 at 2:24pm:

Neither of those places are even close to where I live, there's also a Medigas in Pembroke where I'd probably be able to get a decent regulator and mask but its a good 40 minute drive away and I don't drive. Thanks for checking though, will keep them in mind when i do look into it

   Then lay there and bleed.

         Potter

A bit uncalled for I should think, I merely said they aren't close enough for me to get to at this moment in time, I did thank you for the information as it will be useful in the future, when I can afford the system and have adequate transportation to make such purchases.

Anthony,

If you won't have O2 in your home or workplace, can't get across town to get welding O2 with money you don't have, can't order anything online and Taurine makes you sick.......

I'm running out of suggestions to help you with daytime attacks. Seriously, not being sarcastic here.

Why not go to a doctor?

Marc

Well its a bit more than "across town" to those shops, 3 hours each way on foot with good weather (I've done it before), even though there isn't a 100% chance of O2 being effective for me I'm still willing to give it a try when I can manage to save up enough, until then I was really rather hoping somebody had stumbled upon a more readily available preventative or abortive, like these RC seeds I suddenly started hearing about, I don't know how long its been around but I hadn't heard about them until about 6 months ago, so I thought maybe there could be something new that might be available in my area.

I generally have a checkup every 6 months when I have a doctor, at the moment my doctor decided to go back to school and I've been placed on a waiting list for a new one, we have a shortage in the area so there isn't one to see (walk-in clinic closed down years ago when that doctor left the area, and hospitals are too far to walk to)

For the record as I said I do intend to get oxygen when I can afford it, probably a couple of small tanks that I can use at home and at work when needed, rather than a large tank at home (possibility of that in the future but not at the moment). will look at regulators next time I'm able to, hopefully be able to find one with a high flow rate.

I'm done with this one.  good luck.

          Potter

That's funny I was going to say the same to you after your last post. I remember you from a few years back and I see that your arrogant attitude hasn't changed at all, good bye

Tar wrote on Oct 14^th, 2009 at 5:21pm:

Well its a bit more than "across town" to those shops, 3 hours each way on foot with good weather (I've done it before), even though there isn't a 100% chance of O2 being effective for me I'm still willing to give it a try when I can manage to save up enough, until then I was really rather hoping somebody had stumbled upon a more readily available preventative or abortive, like these RC seeds I suddenly started hearing about, I don't know how long its been around but I hadn't heard about them until about 6 months ago, so I thought maybe there could be something new that might be available in my area. I generally have a checkup every 6 months when I have a doctor, at the moment my doctor decided to go back to school and I've been placed on a waiting list for a new one, we have a shortage in the area so there isn't one to see (walk-in clinic closed down years ago when that doctor left the area, and hospitals are too far to walk to) For the record as I said I do intend to get oxygen when I can afford it, probably a couple of small tanks that I can use at home and at work when needed, rather than a large tank at home (possibility of that in the future but not at the moment). will look at regulators next time I'm able to, hopefully be able to find one with a high flow rate.

See if a friend can order seeds for you, then you just pay him back. It would appear that my trusted suppler ships to Canada: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Ask them to verify.

Bottom of the second page, Rivea corymbosa Seeds - Ololiuqui (RC seeds): $12.99 US for 100 seeds which will give it several doses.

Just thought......

Marc

Tar, I have just read and re-read this entire thread.  A lot of us totally understand not having Ins. not having the money for expensive drugs, but Marc as well as Potter have answered you over and over again trying to help you. 

I might suggest that YOU re-read this thread.  They  are trying to help, but you have kiabashed every single helpful suggestion.  We don't know where else to go with you. 

What would you say we can help you with?

I did not kiabash every helpful suggestion, when I said I didn't know if there was anywhere around here to get welding O2 and Potter took the time to look it up I thanked him, but it is a valid point that those places aren't exactly accessible to me at this moment in time, and he came back with the "then lay there bleeding" comment, honestly if that's what's considered helpful and supportive in this day and age then the world truely is doomed.

O.K. you live in canada and I do not.  HOWEVER...I have many friends here who do live in Canada and have advised so many many folks who come here,  on how to get it.
I will ask a few of them to advise you.  If you cannot get to a supplier but have internet access, then I would suppose that you do not live out in the frozen tundra somewhere.  Am I correct?

I'm pretty close to it, without the ability to travel it does feel as though I'm in the middle of nowhere at times, now that I know there are welding supply companies in the next town over the problem isn't so much finding a supplier but rather getting the supplies, both financially and physically, although I did say I would look into it, I haven't completely ruled out the possibility of having atleast a portable O2 tank that would serve its purposes once before needing a refill, I just need to actually get to the city and look into it, please don't suggest a phone call, its very difficult for me to talk on the phone to people I know, near impossible with strangers, ie. I can't even order pizza on the phone. For the time being I have gotten the info and site for RC seeds and talked to my parents, they have placed an order for me to see if they will be of any help.

A good step in the right direction!

the jury is still out on that one, but if it is one of the substances I react strongly to then I have good hope for it, won't know until they get here, BTW since you're used to dealing with that company how well would you say they deliver on their "1-2 business days" (which for where I am I automatically assume means 3-4 but I'll still be in cycle by that time so not too worried about having to wait to see if they work)

Quote:

please don't suggest a phone call,

I wouldn't dream of it.  :o

I was simply saying that there are others in Canada who understand more than I/we  do about the 02 suppliers and whatever hoops you may need to jump through.  I've asked some of them to come here and advise you is all.

sorry its just usually most peoples response when I talk about having to go somewhere in person to look at something, when a simple phone call would suffice, I just have a problem with phones.

Few years back I actually had my doctor looking into in home oxygen but I never heard back about it before he left town, I know for certain that there is atleast one company in the next town who does in home setups, refills, deliveries and everything but I'd need the prescription first, they'd even come in and access the house to find if there would be any potential problems.

Tar,

You need to stop making excuses bud.  Head on down to the Centennial Family Health Centre and tell the doc you need a prescription for the oxygen (print info from this site and take it with you). Vital-air has an office in Nepean and I believe they deliver all the way up to you. Here is their number 613-224-2100.

If the doctor prescribes you prevents or aborts that you cannot afford let me know.

Everyone here wants to help but you need to (sorry to put it bluntly) Shit or get off the pot.
NO MORE EXCUSES!

Now let me know when your back from the Docs.


Chris

P.S. I'm just south of you in Golden Lake  for most of my summers!

Hi Anthony. I wish there was some way I could help you but all I can offer is what is working for me so far.
First off you must find a doc who understands what CH's are. I was very fortunate to be referred to a neuro who is my godsend. I am working with him fine tuning my treatments.
I use 100% o2 with at least a 15 LPM reg. and a non-rebreather mask but have a Clustermasx and the new o2ptimask now as they are far Superior that the trational non-rebreather one.
As a preventative I take 480mg Verapamil daily and that keeps me for the most part pain free.
There are many other options out there so keep reading all the info to your left, we will find something that will help you.
I hope you find something other than narcotics to battle this pain, they never worked for me.

  Barry 

The centennial health center doesn't take walk ins, I had a doctor there that I could make appointments with before but he left, i'm on their waiting list for a new doctor but since there isn't a new one in the area I'm still waiting.

If I can manage to get you an appointment at the Centre, Will you promise to go?

I just don't want to do it all for not.

Chris

Sounds like you have all the info already, so I don't think I can help much. I live in Guelph Ontario and I use Vital-air for my O2. It costs $23 for a small tank which doesn't last too long but easy for me. I received a doctors note which allows me to have this cost covered via work. I understand your situation is not the same. In the past when I had no O2 I went to the hospital for help more than once, which usually is a disaster. Sorry I can't help.

OK so I went about contacting them anyway and looks like you are correct, they won't budge. Here is the e-mail that she sent back to me. Please take her advice and then post back the results. Tell your parents you need a ride into Pembroke.  Once you have meds you will want to kick your own ass for not doing it sooner.

Good Luck


Thank you for your email regarding your friend.  I am very sorry to hear about his situation. 

Unfortunately, we recently lost one of our two full-time doctors and our wait list has increased to over 5,000 people.  Although we desperately wish we could help people like your friend and the many others who contact us daily, we just cannot help until we have more physicians.

I recommend that your friend contacts Health Care Connects.  This is a program set up by the Ontario government to help those in need find a physician.  Health Care Connects can be reached at 1-800-445-1822.

In the meantime, your friend should visit the walk-in clinic on Lake Street in Pembroke or one of our local hospital emergency departments. 

Please have our assurances that we are doing everything we can to recruit additional physicians to our health centre.

Sincerely,

Susan Foran
Executive Director
Petawawa Centennial Family Health Centre
154 Civic Centre Road
Petawawa, ON
K8H 3H5
Phone:  613 687-8504 x108

A 5,000 person waiting list?

Wow. Just wow.......

Marc wrote on Oct 15^th, 2009 at 1:47pm:

A 5,000 person waiting list? Wow. Just wow.......

I'll second that WOW! 

Is this in any way related to having a government healthcare system in Canada? If so, it makes me even more scared about the future of healthcare in the U.S.
:-?

I told you we had a shortage of doctors didn't I? Honestly wasn't bullshitting when I said I don't have a doctor, there is one walk in clinic in Pembroke that services the entire area, plus the ER at the hospital but they are both always backed up, especially since its flu season. But I will find a way into Pembroke sometime soon, even if I have to pay for a cab, at the moment my father is away teaching a course so I can't exactly ask him to drive me. would be so much easier if I had my license, but I'm working on that at the moment.

Weatherman it is somewhat related to that, since alot of people who go to school to be doctors in Canada end up working in the US because they can make more money there. but mainly its because I live in an isolated area, I did hear that there was a group of half a dozen new doctors who they were trying to recruit to this area but not sure how that's going, if it works then I will probably have a doctor again soon, even if he is straight out of med school.

Tar wrote on Oct 15^th, 2009 at 5:28pm:

Weatherman it is somewhat related to that, since alot of people who go to school to be doctors in Canada end up working in the US because they can make more money there. but mainly its because I live in an isolated area, I did hear that there was a group of half a dozen new doctors who they were trying to recruit to this area but not sure how that's going, if it works then I will probably have a doctor again soon, even if he is straight out of med school.

Straight out of med school, hell, a witch doctor! As long as he or she can write prescriptions, I'd take it!

Well, this has been an interesting thread indeed. I have resisted contributing until I got a better feel for what was really going on with you. It's often so difficult to know when communicating in this fashion.
I think it's fair to say you have had it pretty tough with CH...no way to drive...little money...inability to talk on the phone etc... I find it hard to sympathize because I just can't relate to it all. CH I get! That's bad enough! But I am blessed with a decent job with very good benefits and an understanding Doctor that will get me what I need.
I see people from this site near you are trying to help. WTG people! That's the beauty of this site. People who know what you're going through and are willing to help when they can. I hope you find that help soon!!!
By the way, in defense of the few that were short with you...it was hard to figure you out in this thread. You almost sounded like a troll...like you were'nt going to listen to anyone's advice. I see now that is not the case. Again, this form of communication can be tough sometimes.
Good luck to you!!!!

Yeah I know it seemed like I didn't want to take people's advice, but in my defense I kow I can be rather stuborn at times and my mind is kind of set on the idea that I hate living here (working on paying off some debt before I save up enough money to move away), I've gone through 3 doctors in the last 6 years or so, one was asked to leave town (was a bit of a crackpot), another retired and the third went back to school, makes it hard for a single doctor to track my treatment, which is why i'm waiting for the local clinic to get a new doctor since that's where my medical records are, and a new doctor fresh out of school will be easy to train, I'm hoping that I can present reasonable arguements (print outs of facts from here) and he'll go along with it. On top of the CH I have other medical problems which are supposed to be being monitored on a regular basis, so I'm seriously hoping they find some doctors for this area soon (I'm borderline diabetic, with cholesterol problem which had my previous doctor concerned about my liver so was being monitored for all 3)