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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New to the Boards, not to the pain
        
(Message started by: caseybarton on Aug 25^th, 2004, 12:01am)

Title: New to the Boards, not to the pain
Post by caseybarton on Aug 25^th, 2004, 12:01am

Hi there. I have had CH for about 3 years now, just found your site. Don't know why I never looked for support before. I thought I was alone. When the pain started, I was told I had Shingles, though no blisters ever surfaced. When the pain came back, it took them over a year to diagnose it. Since I have taken a lot of different meds. I then moved to Edinburgh, Scotland from the US, where it has been tough to see the specialist.

Anyway, I finally got my GP to prescribe the Imigran injections, which have helped a lot. Haven't really slept for almost 2 weeks now. Hitting me hard. Dissertation due in 2 weeks. I am just really glad that this community is here...I don't feel so alone. Thanks for being here.

Casey

Title: Re: New to the Boards, not to the pain
Post by vig on Aug 25^th, 2004, 12:27am

hang tough, read up, meet some people.

You're not alone.

Title: Re: New to the Boards, not to the pain
Post by KanKan on Aug 25^th, 2004, 2:03am

Sad to see you have them, but good to have support.

If you see the sleep fairy, let her know i miss her also.

Title: Shadows
Post by caseybarton on Aug 25^th, 2004, 12:33pm

Can someone explain the concept of "shadows?" Are these the pains and smaller (for lack of a better term) headaches I get between the BIG ones? In a cycle, there is very little time that is completely pain free. Are the in-between pains what some refer to as shadows?

Also, can anyone in Canada tell me about the Health Care system? I am from the States, living in Scotland, and moving to Toronto. Here all prescriptions are subsidised heavily by the government. I know Canada has a national health care system, but does this include prescriptions? If so, do you know how much they are subsidised? Thanks, this will be helpful.

Casey

Title: Re: New to the Boards, not to the pain
Post by FZfan on Aug 25^th, 2004, 12:57pm

Casey, welcome to clusterville.

Your guess is exactly what shadows are. For me, when I'm in cycle I will occassional have all day h/a's that are very similar to a hangover headache. I used to call them background headaches until I came hear and learned the term "shadows".

sorry, I can't help you with your insurance questions, but someone will be along soon that can, I'm sure.

Read up on oxygen (menu button to the left side of your screen) and get your gp to prescribe it. For many of us it works just as well as imitrex injections (although it takes longer) for aborting the pain, and unlike imitrex, you can use it as often as you like.

Stick around and let us know how you're doing.

Title: Re: New to the Boards, not to the pain
Post by thebbz on Aug 25^th, 2004, 9:35pm

[smiley=wave.gif] I think you got it , with me I describe it as "the beast just parked and runnin.) About a 2 or 3.
All the best.
BB

Title: Re: New to the Boards, not to the pain
Post by firebrix on Aug 26^th, 2004, 4:33pm

Here's a link to OUCH Canada casey:

http://www.clusterheadaches.ca/DesktopDefault.aspx

The good folks there will be sure to help you find a good neuro and doctor and explain how the Health system works in Toronto.
Happy days to you
firebrix

Title: Re: New to the Boards, not to the pain
Post by Margi on Aug 26^th, 2004, 4:57pm

Hi Casey
Good luck with your move - hope the flight doesn't make your head worse (that's been known to happen but the effects of the altitude change do pass after awhile).

Each Canadian province regulates their own health care but I believe Ontario just changed theirs. I think they now have to pay monthly premiums. The provincial health care plans will pay for your doctor visits (to a certain dollar maximum), some services (eye exams, portions of chiropractic, etc.), some hospital coverage (wards are covered but probably not private rooms), etc. Drug coverage isn't federally regulated, as is general health care. Usually what the provincial health care doesn't pay for, the drug insurance plans will pick up.

Blue Cross is available if your employer doesn't provide a drug plan insurance program. Individuals can pay a monthly premium into Blue Cross and get reimbursed for prescription meds. With employer sponsored insurance, it's more likely it will cost you nothing (or very little) at the till - if it's a good insurance plan. So, if you're being transferred to Ontario because of your employment, definitely push for the drug plan! Some companies charge their employees a portion of the premium, some do not.
p.s. please do feel free to join us over at OUCH Canada once you are settled (or before, too!). We're here to help.

Thanks, Brikkie, for the plug! ;)

Title: Re: New to the Boards, not to the pain
Post by caseybarton on Aug 28^th, 2004, 9:55am

Thank you everybody for your encouragment and help. The cycle has been especially harsh this time, worse than ever for me. It is so good to know that there are people out there who understand what I am going through. My wife is amazing, and she is very supportive, but she doesn't know the pain. My friends are wonderful, and they genuinely care, but if one more suggests it is allergies/stress/whatever, or calls it/compares it to their migranes or tension headaches I will...probably do nothing, but it is frustrating.

I meet with my GP again on Monday. Especially after reading these boards, I think that I have the right meds, but may not be taking them properly. I will have more information to give her on Monday, thanks to all of you.

Thanks
Casey

Title: Re: New to the Boards, not to the pain
Post by Kevin_M on Aug 28^th, 2004, 11:29am

Casey,

I have only read this thread by you, but the only meds you've mentioned is the imigram. A preventive should be prescribed also. Ch.ca is a great link, use it for the best answers for their health care system, although the good Canadians are always here also. With clusters, prescription coverage, as Margi mentioned, would be a great idea to utilize, in fact essential.
Shadows seem to be an ongoing battle which can take place while the beast is eating lunch or something and linger until the beast decides to grab its sword and suit up and make a personal appearance again.
Sounds like a beautiful city you are in now. Toronto is definitely a quality town. Been there many times from Detroit here. Love it. Good luck and stay in touch now.

Welcome

Kevin M

Title: Re: New to the Boards, not to the pain
Post by caseybarton on Aug 28^th, 2004, 8:15pm

Kevin,

About the meds -
I used to take gabapentin (Neurontin)--900mg/day. Took it for almost 2 years, and it helped me. Extended the time between cycles, and when I got hit, it didn't seem as bad. When I came to Edinburgh, the Neurologist told me I needed to ween off of it, as I should only be taking it when in cycle. However, no instructions for taking it when I get hit. My fault for not asking, I guess. So, no preventative at the time.

Doc gave me Pred, and I am to start taking it as soon as I feel the beast. 50 mg on day one, decresing by 5 mg each day for 10 days. The first time I had to use it it seemed to shorten the cycle. This time, I didn't feel any benefit.

Craziest thing happened. In this current cycle, I went to my gp to get the injections. He said he would prescribe them. I asked him specifically: "Is this an injection?" He said "Yes." Take the script to the pharmacy, they tell me it won't be in until 5pm. I come back, and they have a box full of pills. I said that can't be right. The doc had prescribed Methysergide - which states plainly that it is a preventative which will not help abort a headache. I didn't need a preventative, I needed the Imitrex. Problem was, it was Friday, and the clinic I go to is only open on Saturdays for Emergencies. I went anyway, told the Dr. (different doc) that I needed the injections. She says that the clinic has lost my file, and that she can't give me anything. Lost my file! They had it 24 hours prior. But here's the kicker. She says: "The problem is that you have come in here on a Saturday, and we don't have the staff to be rushing around trying to find your file." What is up with that? Like it is my fault that they lost my file. Like it is my fault that I have the mother of all headaches on a Saturday (and every other day...). I told her that I wouldn't be able to get through the weekend in the pain, and without the sleep. She would only give me sleeping pills. Took them. Didn't work. Just made me really tired with a HA. If at all possible I won't be seeing her again. Made it through the weekend and got the injections on Monday morning.

Anyway, all that is to say the doctor pissed me off...but also that I have all of this Methysergide and don't really know what to do with it. He said that I should take up to 9 mg/day. But when? In cycle? Out of cycle? All the time? I didn't have the presence of mind to ask at the time, but I will ask my regular gp on Monday. She is back from holiday, and knows my case a little better.

Sorry to vent so much, that whole lost file thing has been a week brewing, and I am just amazed at how that DOCTOR "treated" me.

BTW - Looking into OUCH ca and all that business. Thanks for the links and help everyone.

Casey

Title: Re: New to the Boards, not to the pain
Post by Kevin_M on Aug 28^th, 2004, 9:14pm

Casey,

I don't know about Neurontin, but if you scroll through the Medications and Treatment board you will find several entries about it back through time.

It sounds like the Saturday staff didn't know that much about your condition, was busy, said your file was lost so they wouldn't have to make a decision about giving you medication that required an injection. They kind of shied away from the decision making.
Understaffing in the medical profession can happen some places. Here, the nurses are on strike at a hospital because of being overworked. Hardly ever hear of striking nurses, but they have rejected two offers, so it must be a tough situation to go back to work the way they had been.

I was given a pred taper and verap to start stepping up last cycle. This is not a drug to fool around with either. The doc just gave me quick verbal instructions and I was abit slow to react. She left and I couldn't remember anything. A nurse came in and I asked her to explain it to me again so I could right it down. She went out and came back with a complete schedule for taking each dosage everyday. That became very important because I don't have a good memory.
Anyway, that schedule became quite a lifeline because I would mark off each day so I wouldn't forget what dosage and what day I was on. It was really handy. I could set out just what I needed daily and mark it off that I took it. I felt like a really old person trying to keep track of meds to take.
It's very tough getting locked out for an abortive for the weekend, man that's just plain cruel. Make sure it doesn't happen again, it happened to me years ago and it was really bad. Didn't happen again.
I also don't know about Methysergide, check with your doctor on taking that but there will be something written about it here if you type it into search. That's what this place is for finding out things, but always check with your doctor before taking any actions of your own with meds.
Ch.CA is a really cool place too. Get straight with the meds and be careful to follow the doctor's instructions with the pred. Hope it does some good, but you are taking the pred for ten days. Usually after the end of the taper you should be on some sort of other prevent. I say usually, but I see you say you are getting hit hard now. I would never count on the pred knocking out a cycle completely, it is to give you a break for a short time only until you can get another prevent worked in. You say you are stopping the Neurontin, so a prevent is missing. I do not know about Methysergide but you say that is a prevent, you should ask if that is supposed to be tapered up while on the prednisone. Ask about what is going to be your prevent anyways and how to take it, ok. Yeah on the imigram.

Good luck and stay prepared. ;)

Kevin M

Title: Re: New to the Boards, not to the pain
Post by writer on Aug 29^th, 2004, 10:54am

So sorry to hear about your pain. In case it's of any use, I'll add my experience with methysergide, also known as Sansert. It is an extremely close relative of LSD and although it certainly prevented headaches, I could not stand the severe side effects which made me feel crazy, dizzy and totally unable to think.

I realize there's a downside to everything, but the Sansert was (in a different way) as bad as the cluster. Plus, continued use can cause fibrosis of tissue and other bad things, and every few weeks you have to have your blood sampled.

Obviously I'm not a physician, but methysergide--no way!!

A million good wishes for all the help you need, and less or no pain!!

-Writer

Title: Re: New to the Boards, not to the pain
Post by caseybarton on Aug 29^th, 2004, 5:32pm

Writer,
Thanks for the info. I meet with the doc tomorrow, and I will be asking her about it. I will look it up on the net before I go. Sounds like you ahd a bad time of it. Did you get the meds straightened out? What worked/works for you in place of the Sansert (easier to spell!)?

Thanks,
Casey

Title: Re: New to the Boards, not to the pain
Post by caseybarton on Aug 29^th, 2004, 5:42pm

Just realized that I stole Machine6's thread title. I didn't mean to. Thought I was creative...maybe not. :(

Or...maybe me and Machine6 are similarly creative. Don't know...but I really didn't mean to. Oh well. If that's the worst thing I ever do here it ain't that bad.

What am I talking about? I'm goin to bed.

Casey

Title: Re: New to the Boards, not to the pain
Post by Filbert on Aug 29^th, 2004, 9:25pm

Hi Casey
Sorry to hear you're suffering so much at the moment and that you're experiencing the all too common runaround with your GP. If you want some info on methysergide just click on the medical info section on the left and don't dismiss it completely yet. Some episodic sufferers have had positive results from it so it could well be worth a try. Of course I'm not a doctor so check it out thoroughly if you're worried.

All the best Filbert.

Title: Re: New to the Boards, not to the pain
Post by clarence on Aug 30^th, 2004, 2:41am

Thanks Filbert, I will be reading up on it.
Appreciate all of your support.

BTW - I changed my username. But its still me. Hope thats not too confusing.

Casey

Title: Re: New to the Boards, not to the pain
Post by pubgirl on Aug 30^th, 2004, 2:57am

Hi Casey

You may have been told all this elsewhere (sorry if you have), but if you have any problem with getting the right abortives in the UK they are listed clearly in the latest edition of the BNF, which EVERY GP here has for reference as it is their prescribing Bible.

Here is the link to what the GP will see if they look

http://www.bnf.org/bnf/bnf/current/noframes/106533.htm

Also, getting the right flow rate 02 and masks whilst you are still in the Uk can be a bit tricky. If you go to OUCH UK www.clusterheadaches.org.uk you will find links to 02 which tell you about which canisters and headsets etc you need and how to get them. There is also a Helpline number you can ring to discuss anything you like with a knowledgeable sufferer

Wendy

Title: Re: New to the Boards, not to the pain
Post by clarence on Aug 30^th, 2004, 5:58am

Thank you Wendy. That link is really helpful. I see the doc today so I will let you know how it goes.

Casey

Title: Re: New to the Boards, not to the pain
Post by writer on Aug 30^th, 2004, 6:06pm

Dear Casey,

You asked what meds I took after I stopped the Sansert.

The answer is NONE. In my day, ergotamine and Sansert were about all there was. The ergot was useless, and (for me) the Sansert side effects were vicious, the only word that accurately describes them. I had a young child at the time and could barely see his face through the fog of them. However, eveybody is different, and maybe your experience will be different. I drank strong brewed coffee, cup after cup after cup, and it helped me stay sane (just barely) and hang on through the cluster attacks, especially in the middle of the night. Afterward I was so exhausted that I went right to sleep (for a couple of hours) despite all the caffeine. I will be interested to hear how you find the Sansert, if you take it. . . and meantime, every prayer and thought for many painfree days and nights.

-Writer