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        Cluster Headache Help and Support >> Getting to Know Ya >> Greetings from Finland!
        
(Message started by: Ungweliante on Mar 28^th, 2008, 5:05am)

Title: Greetings from Finland!
Post by Ungweliante on Mar 28^th, 2008, 5:05am

Hello, new member here!

My headaches began on the last days of September 2007, just out of the blue. Before that I only occasionally got migraines, maybe once a month. After September, well, basically every day one to six times. Each can last one to three hours.

The symptoms I guess are quite typical. Burning, boring pain only on the right side and runny right side of the nose, droopy right eyelid and slight reddening of the right eye, depending on the severity of the attack. The worse the attack is, the more pronounced those effects are.

Currently I'm waiting for a letter from the neurologist I saw. I've already had a MRI-scan, which didn't reveal anything. Heh, the neuro said that it's definitely a good thing, but then again I was telling him on the phone that being in pain for 6-8 hours during the worst phases every day isn't a good thing when you don't have any definite cure. He seemed a bit surprised that I wasn't happy about not having a brain tumor. I guess most of you know how I'm feeling :)

After September, the most effective medications have been indomethacin, which stopped working around Xmas, and after that corticosteroids, which work well on a high dose (40mg daily or more). I've read quite a lot of the bad effects of the steroids from here and am currently trying to reduce the amount again. Lately I've been drinking a lot of this "ED" -energydrink, which also seems to make a definite impact on the headache. Sometimes it aborts it completely, sometimes just seems to reduce the amount.

What I found strange in the beginning was that I don't really get the "suicidal pain" -type of CH that I thought it would automatically be, if it's CH. The headaches can be bad, even so bad that I moan and twist around on the bed, unable to do anything else, but mostly they don't reach that far. I've been still thinking if it could be something else, but even the neuro seems to think that it's most probably CH, with a mixture of migraine on top. It can be very annoying to properly diagnose this, considering how rare it is and how the medical community often seems less than capable in handling this. It's been half a year for me, and I still don't even have a definite diagnosis, not to mention that the public sector refuses to do anything before the private neuro has diagnosed this for them. But then again, the little friend inside the head is wily and knows how to change shape. Still, everything is taking so long, and waiting is hard when you're in pain...

Anyways, I want to thank all of you fellow sufferers for being here. Even though I haven't joined until yet, this community has already helped me deal with my problems.

Warm regards,
Rosa

Title: Re: Greetings from Finland!
Post by Guiseppi on Mar 28^th, 2008, 10:22am

I'm glad you found us! Good to hear the neergy drinks are helping, that's a common treatment here on the board.

That being said, you need to try oxygen. Breathing 100% oxygen will abort a headache for me i as litle as 6-8 minutes. Read the link on the left, "Oxygen Info" for the details. Basically you need 100% oxygen, at a high flow rate, at least 15 LPM, through a Non Re Breather mask, started at the first sign of an attack. It's been incredibly effective for many and should be your first line abortive.

Welcome to the board I sure hope we can guide you towards some relief.

Guiseppi

Title: Re: Greetings from Finland!
Post by Superdave on Mar 28^th, 2008, 3:28pm

Hello Rosa and welcome

So happy you found us, Please ask any questions you might have and learn what you can about o2 it really is a great way to battle the beast. I purchase redbull buy the case and chug them down at room temperature at the first sign of an attack it really works great for me

Have you tried melatonin for the nighttime hits? I use 9mg at bed time.

Superdave

Title: Re: Greetings from Finland!
Post by Callico on Mar 28^th, 2008, 3:53pm

Hi Rosa,

Welcome aboard! Sure wish you were somewhere else!!! :)

The beast, as you mentioned, is a wily thing, and rarely presents itself the same way twice in a row. you mentioned that you don't get the "suicide level" of pain. that is not unusual. If we all got that level all the time this would be a very small board! I've suffered with these for almost 30 years, with the last 4+ chronic, and can list the number of full blown Kip 10's on my fingers. Most of my attacks range from a 5-8 Kip, with an occasional 9. Part of that may be that I have learned to deal with them, but for the most part I personally feel that for most of us a 10 is an abnormality, albeit far more common than we would wish.

you mentioned some of the things you use for an abortive, especially the steroids, but did not mention a preventative. The steroids are useful for breaking an attack and giving some relief, but should only be used short term to allow a preventative the chance to build up in your system to an effective level.

I'm really glad you found us, and that you were diagnosed so quickly. Do a lot of reading. Print out things that you would like to try and take them to your Dr with you. Unfortunately, your treatment will rest largely on your own initiative, as most Drs know very little about CH.

Jerry

Title: Re: Greetings from Finland!
Post by Ungweliante on Mar 28^th, 2008, 5:02pm

on 03/28/08 at 10:22:39, Guiseppi wrote:

That being said, you need to try oxygen. Breathing 100% oxygen will abort a headache for me i as litle as 6-8 minutes. Read the link on the left, "Oxygen Info" for the details. Basically you need 100% oxygen, at a high flow rate, at least 15 LPM, through a Non Re Breather mask, started at the first sign of an attack. It's been incredibly effective for many and should be your first line abortive. Guiseppi

Yeah, I've been planning to ;) ...the thing just is that the medical community isn't quite as fast-moving that I can be. Actually the neuro said, when I asked him about the oxygen, that it's the "last line of treatments concerning CH and is used when all else fails"...which I considered pretty strange. The neuro is supposed to be a headache specialist too :o

on 03/28/08 at 15:28:25, Superdave wrote:

Have you tried melatonin for the nighttime hits? I use 9mg at bed time.

In my case, I seem fortunate not to get any nighttime hits. I quite often wake up with a headache at around 10 am, or I wake up and the pain starts half an hour after that. So that being the case, I haven't tried melatonin so far. I do drink the occasional cup of "night milk", though, which supposedly has melatonin added in it :P

on 03/28/08 at 15:53:03, Callico wrote:

The beast, as you mentioned, is a wily thing, and rarely presents itself the same way twice in a row. you mentioned that you don't get the "suicide level" of pain. that is not unusual. If we all got that level all the time this would be a very small board! I've suffered with these for almost 30 years, with the last 4+ chronic, and can list the number of full blown Kip 10's on my fingers. Most of my attacks range from a 5-8 Kip, with an occasional 9. Part of that may be that I have learned to deal with them, but for the most part I personally feel that for most of us a 10 is an abnormality, albeit far more common than we would wish.

Oh, that's absolutely great news. It just seems that nearly everywhere it's really emphasized that CH is extremely painful, the headaches are very bad, etc etc. It was confusing, but hey...much better this way. I'm definitely not looking forward to a level 10 attack :P

on 03/28/08 at 15:53:03, Callico wrote:

you mentioned some of the things you use for an abortive, especially the steroids, but did not mention a preventative. The steroids are useful for breaking an attack and giving some relief, but should only be used short term to allow a preventative the chance to build up in your system to an effective level.

Yeah, I know. I remember just reading a couple of days ago right from this forum some of the bad effects of corticosteroids. It made me decide to try to get away from them again, being that I don't want to be in a wheel chair in ten years or so. I've already on and off of them for around three to four months. Today was the last day of my current taper, though, so let's hope I can keep away. The energy drinks should help with that.

About preventatives...well, the silly thing is that I don't have any. I had to suggest them to the neuro myself and he's supposed to give me some Verapamil, but things work slowly. I need him to write me an epicrisis, take that to the public healthcare doc, then have him prescribe me stuff based on the epicrisis to save medical costs. The neuro is a private one and costs around 100e per visit...which is quite a lot for a person of my income.

Also, I asked the public doc to just prescribe me Verapamil, based on my headache diary for half a year, a medical info-article by a Finnish headache society and what I told him the neuro told me. His reaction was to laugh at me at the phone and not to take me seriously at all...which I'm sure is a reaction most of you know very well. In the beginning this "medical hero" even diagnosed my headaches as stress-related, even though I wasn't stressed at all and also told him that. His next diagnosis was that I'm just imagining it all and he advised me not to read about my headaches from the internet ::) Suffice to say that I changed the doc awhile after that to another.

It's also quite annoying, since I'd really -want- to have a preventative. I'm supposed to work and study at the same time starting in just a few days, and concentration can be quite difficult when you feel that half your head is rhythmically being burned by a blowtorch :P Anyways, the neuro is supposed to call me on Tuesday and then I'll talk things through with him.

Anyways, thanks a lot for all the advice. This seems like a very friendly community :)

Title: Re: Greetings from Finland!
Post by Callico on Mar 28^th, 2008, 6:03pm

You might want to give Kudzu a try as a preventative, at least until you can get the Doc to get his thumb out, and actually learn something about medicine. Remind him "gently" that he is not God, but that he is just "practicing". Kudzu is herbal rather than medicinal, and it did well for me. I also found fewer side effects than with Verap and Lithium.

Sanna is a fellow Finn, and has written some of the material used by the Headache Society. She may be able to direct you to someone who is more knowledgeable.

Jerry

Sorry if I come off to strongly on Drs. I am just so fed up with someone who just because he has a shingle on his wall and Dr appended to his name thinks he knows all, and that one of us plebians should never deign to try to educate him. There are people on this board who know more about CH than 99% of the Drs who are practicing medicine.

Title: Re: Greetings from Finland!
Post by Ungweliante on Mar 28^th, 2008, 6:21pm

on 03/28/08 at 18:03:25, Callico wrote:

Kudzu? This is the first time I heard about it. Can you tell me how has it worked for you? Better than Verap altogether, or just less side-effects? More effective? What dose do you use? When? How?

on 03/28/08 at 18:03:25, Callico wrote:

Sorry if I come off to strongly on Drs. I am just so fed up with someone who just because he has a shingle on his wall and Dr appended to his name thinks he knows all, and that one of us plebians should never deign to try to educate him. There are people on this board who know more about CH than 99% of the Drs who are practicing medicine.

Believe me, I know just how you feel. Absolutely no offense taken. I don't want to sound like an arrogant bastard, but this is one of the reasons why I'm trying to get into medschool myself. A doctor's profession is a customer service profession, not managing or business. Whatever happened to Hippocratic Oath?

Title: Re: Greetings from Finland!
Post by Callico on Mar 28^th, 2008, 7:12pm

Check the Meds and Treatments board for info on Kudzu. You can find it in health food stores, but usually not in the mass merchandizing ones. I found mine at a small store that specializes in organics and natural remedies. You can also find it online, usually a little cheaper.

I found the kudzu to work about equally to that of Verap, but without the side effects. If there were any with Kudzu I did not notice them. The dosage will depend on the brand and the potency of the capsules. Some brands are a little more potent than others. I also found the Kudzu to be absorbed a little quicker than the verap. I was noticing a difference in about 3 days with the Kudzu, whereas it took about 2 weeks with Verap. Not all find that to be true, it depends on the individual.

To often the Hippocratic Oath has become the hyppocritic oath, IMHO.

Title: Re: Greetings from Finland!
Post by Ungweliante on Mar 28^th, 2008, 7:22pm

Thank you. I'm definitely going to look it up the first thing tomorrow. If it's going to give me a painfree day, that'd be absolutely super :)

Title: Re: Greetings from Finland!
Post by Batch on Mar 29^th, 2008, 1:46pm

Rosa,

Shoot Sanna a PM or email. She lives in Helsinki and should be able to help.

V/R, Batch

Title: Re: Greetings from Finland!
Post by sandie99 on Mar 31^st, 2008, 11:28am

Rosa,

I thought I'd write a few words here as well... From a Finn to another, welcome! Tervetuloa. :)

BTW, I've forgotten to ask you: have you visited the Finnish site already? If not, it's worth visiting:
http://www.kolumbus.fi/geodun/cluster.htm

Wishing you PF time,
Sanna