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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Yet another Newbie
        
(Message started by: PerryGR on Aug 20^th, 2004, 7:42am)

Title: Yet another Newbie
Post by PerryGR on Aug 20^th, 2004, 7:42am

Hello everyone,

I’ve been loitering around this site and message board for about a month –ever since I’ve been diagnosed with clusters –and I thought it was high time I introduced myself to you.

My name is Perry (full name is Paraskevas and if you don’t find it annoyingly long and difficult to pronounce –like most people do –you can address me by that) and I’m a 22 year-old male from Greece. I’ve been having this kind of headaches since Christmas of 2001 –that makes it a little bit over two and a half years. Ever since that first headache I’ve been diagnosed with migraines by three different doctors (2 neurologists and 1 GP) –a diagnosis which is quite beyond me since the only typical symptom of migraines that I do have is photophobia (I very rarely experience nausea but I think this is due to excessive pain at the time) and the longest attack I recall having didn’t last more that 2 ½ hours. Anyway, their diagnosis earned me a chance to try some of the drugs people take for migraine (and to my dismay I later found out that some of them are also used for clusters). I’ve tried Depakine (I think it’s the same as Depakote), beta-blockers, DHE (orally), Topamac (same as Topamax), flunarizine and amitryptyline. They all seemed to work during the first month of treatment but about 40 days into each treatment my headaches’ frequency and intensity raised dramatically. Then a 4th doctor (another neuro) suggested that they couldn’t be migraines –due to the duration of my attacks –and that it was possible my headaches were due to paracetamol abuse and the use of oral triptans (doctor #3 had introduced me to oral triptans but I wasn’t able to get more than 8 dosages per month due to insurance policy). So doctor #4 suggested that I should keep away from any pain management medication, seek some help from a psychiatrist (I guess I wasn’t quite upbeat at the time) and that I should stay on amitriptyline that was what I was taking at the time. Then a month or so ago doctor #3 referred me to doctor #5 (another neuro and headache specialist). He diagnosed clusters and suggested that I was chronic since the longest pain free period of time I had since Christmas 2001 lasted about a week and that was when I was on some anti-inflammatory drug due to a broken arm. He put me on 240 mg of Verapamil and introduced me to Imigran (same as Imitrex) injections. Ten days ago I upped my Verapamil to 360 mg and now I’m waiting to see if that’s going to have any results. I haven’t tried oxygen yet since I am a smoker and am afraid of keeping an oxygen tank in a place where open flames are a usual phenomenon.

I tried to keep this short-winded but it’s obvious my attempts where futile. Sorry, I only meant to give you some insight of my history with clusters. Anyway, thank you for taking the time to read this.

I also want to thank you for all the information all of you have offered me, through this site and many of your posts, in this last month or so. Apart from giving me info your posts have also offered me tons of support (although it wasn’t directed personally to me). There were posts that have taken me to very emotional places and others that have made laugh so hard my stomach hurt (although I have to admit I don’t get all the jokes –I’d like to believe this is due to the language barrier and a different culture thing and not an indication of lack of humor on my part ;)). Thank you.

Thank you for your patience,
Paraskevas.

P.S.: This is too freaking long... I'm very, very sorry.

Title: Re: Yet another Newbie
Post by kimh on Aug 20^th, 2004, 7:52am

Hello and Welcome PerryGR!

You are in the rite place. I also smoke and use o2. If you are responsible and take reasonable precautions, it will not pose a problem at all. Many, many smokers here use o2. :) I urge you to pursue it! There is an o2 link to the left which has specific directions on oxygen as an abortive measure.

Glad you posted! You will be overwhelmed by the amount of support and assistance received at this website :)

Well wishes and PFDAN :)

Title: Re: Yet another Newbie
Post by PerryGR on Aug 20^th, 2004, 8:17am

Hello kimh,

Thank you very much for your immidiate response. I was kind of fearful of the fact that my long-winded post would put off people from replying -glad this is not the case.

As for the O2, i might just hear you on this one -i could use an abortive other than imigran injections.

I hope for PFDAN for you all,
Paraskevas.

Title: Re: Yet another Newbie
Post by FZfan on Aug 20^th, 2004, 9:08am

Perry,

Welcome to clusterville. The length of posts is nothing to apologize for.

I would like to back up what kimh said. Don't be afraid of the o2. Get it right away. I am also a smoker and I find great relief from the attacks with my o2 bottle and non-rebreather mask.

As long as you don't smoke while the o2 is running it is perfectly safe. Hell, I'm smoking right now and my o2 bottle is only 10 feet away. Or should I say 3 meters?

Good luck finding some relief. You have definitely come to the right place.

Title: Re: Yet another Newbie
Post by Prense on Aug 20^th, 2004, 9:39am

on 08/20/04 at 08:17:58, PerryGR wrote:

As for the O2, i might just hear you on this one -i could use an abortive other than imigran injections.

Yes you could! Make sure the O2 is prescribed correctly (link on the left).

Even with your initial misdiagnosis, it sounds like you are dealing with doctors who seem to care. Remarkably, they all sound like they are on the right track. Thanks for sharing Perry...stick around!

Chris

Title: Re: Yet another Newby
Post by PerryGR on Aug 20^th, 2004, 6:46pm

Thank you guys for your replies, it means alot.

Now i have to admit i've been searching the market for the suplies that go along with the oxygen (a.k.a. mask, bubbler, regulator) and i can't seem to find the mask that is depicted in the link on the left. All i have found is masks without the bag but with a hole on each side that are meant to serve as a way out for the air you've already breathed. Does this consist of a non-rebreather mask? Has anyone tried out this kind of mask and if you have, is it effective?

And one last thing... It's kind of embarassing but here it goes... While being on Verapamil how long constipation is supposed to last? Are our intestines supposed to get used to the effects of the drug without this meaning that the drug is loosing its effectiveness all together?

Again, thank you. PFDAN to all.
Perry (a.k.a. Inquiring mind :))

Title: Re: Yet another Newbie
Post by pubgirl on Aug 20^th, 2004, 6:50pm

Hi Perry

Depends what the holes are like. If they are just holes, tape them over as you will be breathing air as well as oxygen otherwise and this will lessen or even prevent the oxygen flooding effect you need. If they are valves that let breathed air out but nothing in, you're on the money!

Wendy

P.S. Also ALWAYS cut the elastic off so there is no risk of passing out/falling asleep with it on and dying

Title: Re: Yet another Newbie
Post by Jonny on Aug 20^th, 2004, 6:55pm

Hey dude,

You need the mask with the bag, the other masks are bull-shit cause they mix room air with the 02. Clusterheads need 100% 02 and only a non-rebreather mask will give you that.

Verapamil?........Drink lots of beer or take a laxitive ;;D

................................jonny

Title: Re: Yet another Newbie
Post by pubgirl on Aug 20^th, 2004, 7:00pm

Agreed Jonny, non-rebreather mask is best, but if someone only has a basic mask set in the interim while they get hold of the right one, it will work if modified.
I found the time to abort was about the same with either but I needed 15l/min with a 'holes taped over' standard mask, but only 10l/min to abort in the same time with a non-rebreather.

It's also a right pain having to lift the taped mask off your face every time you breathe out :(

Wendy

Title: Re: Yet another Newbie
Post by kycouple on Aug 20^th, 2004, 7:08pm

Hey Perry, new one here too.
Take thier advice get the O2 it help. And visit this board often, these great people helps also.

Title: Re: Yet another Newbie
Post by PerryGR on Aug 20^th, 2004, 7:27pm

Your response time is quite outstanding. Thank you all very much.

Quote:

Verapamil?........Drink lots of beer or take a laxitive ;;D

I'd go for beer if i didn't feel that alcohol doesn't agree with me these last few years. You see it makes me want to dance real bad and i look damn unattractive when dancing ;;D

Now, probably my question about Verapamil didn't come across quite as i meant it or i'm just plain stupid and can't take a hint. Let me rephrase... In my case constipation only lasted for about 10 days (it started some 8 days after i started Verapamil). What i meant to ask is whether this is common (the constipation wearing off after some time) or it is an indication that Verapamil has stopped working all together.

Again, you're great, thank you. PFDAN to all,
Perry.

Title: Re: Yet another Newbie
Post by Jonny on Aug 20^th, 2004, 7:55pm

I dont know Perry, I have been taking verapamil everyday for over 12 years and never had a problem when it comes to that.

I do know after being here and reading for five years that being constipated does not mean that it has stopped working.

..................................jonny

Title: Re: Yet another Newbie
Post by Cooked Brain on Aug 20^th, 2004, 10:52pm

welcome to the club Perry!

[smiley=hiya.gif]

Title: Re: Yet another Newbie
Post by FZfan on Aug 21^st, 2004, 10:31am

If you can't find the non-rebreather mask with bag at a local outlet, get it on the internet. They're not expensive, I paid 5 bucks for mine so I bought two.

The bubbler is an option, not a necessity. Some folks need the bubbler because the o2 dries them out too much. I get dried out a little, but not enough to warrant bothering with a bubbler.

Title: Re: Yet another Newbie
Post by PerryGR on Aug 22^nd, 2004, 6:00pm

Hello everyone,

Thank you all very much for your replies -they've been most helpfull. I'll contact my insurance company tomorrow to ask for the procedure that needs to be followed in order to obtain O2.

Again, thank you all very much, you're great :).

PFDAN to all,
Perry.

P.S.: I think this thread has served its purpose -cu in other threads :).

Title: Re: Yet another Newbie
Post by Gator on Aug 23^rd, 2004, 7:59pm

Hello Paraskevas! A belated Welcome to the website. Sorry you have had to deal with these things, but as you have already discovered, you are in the right place for information and support.

Hey, if you are still interested in a bubbler, ClusterChuck posted it on the Genreal Board. Here is his post:

Quote:

Build your own bubbler « on: 08/18/04 at 00:21:13 »

I answered Lizzie2, in another thread, with this, to help her with her problem. I was asked by two family members to post it as its own thread, in case anyone missed it. So here it is.

I hope it helps some of you out.

Before I got an "official" bubbler, I made my own. The way I did it was with an empty mayonaise or peanut butter jar, a bungee cord and some silicone glue. A plastic lid works best.

Drill two holes, just large enough for your air hose to fit through, in the lid, at two opposite sides of the top.

Strap the jar to your tank, with the bungee cord. Cut your hose, long enough so that it goes from the regulator to the bottom of the jar, plus a little more. Push it through one of the holes in the lid.

Take the other part of the hose that you cut off, and put it in the other hole in the lid, just far enough to go through the lid.

Seal around both hoses with the silicone glue. Let it dry.

Now file the jar about one third full. I add ice cubes to mine, if I am capable at that time, so that it cools the air, too. It sometimes helps to make the O2 work faster.

You now have a working bubbler.

Chuck

Again, welcome!

Gator

Title: Re: Yet another Newbie
Post by thebbz on Aug 23^rd, 2004, 11:33pm

Perry,
Tried the O2 over and over ,never had much luck until it was administered correctly, have to have the non-rebreather. All the best , as for the beer...I would love to but it is a trigger for me. Hang in there nice to meet ya.
BB

Title: Re: Yet another Newbie
Post by FZfan on Aug 24^th, 2004, 1:34pm

on 08/22/04 at 18:00:35, PerryGR wrote:

P.S.: I think this thread has served its purpose -cu in other threads :).

Sorry, newbies are not allowed to determine when threads end. ;;D

So how you doing, Perry? Get the o2 yet?

Title: Re: Yet another Newbie
Post by PerryGR on Aug 24^th, 2004, 3:55pm

Quote:

Sorry, newbies are not allowed to determine when threads end. ;;D

Thank you for reminding me my place FZfan -i needed that. I've been a naive and arrogant little prick -BAD Perry! ;;D There's not going to be a next time because i understand you cut me some slack this time around and gave me a warning -i don't want to find out what kind of disciplinary methods you have for newbies that cross the line :)

Now seriously, thank you all for your messages. I'm doing ok FZfan, thanks for asking. Verapamil has finally kicked in and the frequency of my HAs has dropped to 1-2 a day with some shadowing. It doesn't seem to do anything with the intensity -i'm not sure if it's supposed to anyway. I'd say this is the best break i've ever gotten with clusters ever since they started.

On another account, things with oxygen are a little sticky. My insurance company wants me to get a diagnosis and a prescription from a hospital doctor so i got myself an appointment for next month. As soon as i get those i have to file for approval from the insurance and then wait until they decide if they're going to provide it. If i decide to acquire it before then i'm going to have to pay it out of my own pocket and medical oxygen is a little too much for my budget right now. Welder's oxygen would've been a solution if i could find a welders supply shop -i'm still searching on this one. So i guess the matter gets pushed back until i either manage to get welders oxygen or get approval by the insurance. It sucks really but there's not much i can do at this point.

Again, thank you all, you've been most helpful.

PFDAN to all,
Perry.

Title: Re: Yet another Newbie
Post by FZfan on Aug 24^th, 2004, 5:39pm

Well, believe me, insurance here in the states isn't any better or easier to deal with. Fortunately, I am able to afford the o2 out of my own pocket when necessary.

I'm thrilled things are getting better for you. Hope you get the o2 problem straightened out.

Title: Re: Yet another Newbie
Post by ExPat_jac on Aug 25^th, 2004, 7:05am

on 08/24/04 at 15:55:05, PerryGR wrote:

Welder's oxygen would've been a solution if i could find a welders supply shop -i'm still searching on this one. Perry.

Perry dude....you can't find a welder in Greece???

Oh..thats right....rock....

(sorry...couldn't resist...)

Hey..if you gots to have CH's then at least you're in a great place to have them in!

Hang in there...and PFDAN's to you!

ExPat_Jac