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        Cluster Headache Help and Support >> Cluster Headache Specific >> So I stopped my three month dose of steroids...
        
(Message started by: Ungweliante on Mar 30^th, 2008, 4:43pm)

Title: So I stopped my three month dose of steroids...
Post by Ungweliante on Mar 30^th, 2008, 4:43pm

...and am currently in the middle of the fourth attack today. Each lasts around 2,5 hours, with a possible half an hour peak pain period. During the last one I just lost the track of time and 50 minutes later noticed that I had oozed a puddle of slime on the table I was sitting at :P The damn pain really seems to cancel out everything else.

Yeah, I know that I shouldn't have taken steroids for that long. My nurse friend kept telling me, though, that being in pain serves nobody. I ate one prescription of them, stopped, the pain came back, ate more...although now I've decided that it's definitely time to quit. I don't want to be in a wheelchair in five years or so. But sigh...this is really quite difficult. I just hope the kudzu would kick in sooner rather than later.

I'm supposed to start working on Tuesday. How am I going to manage that? Should I explain the employer about this stuff right in the beginning? I'm starting to think he would find out anyways, if I sit down for two hours in the middle of the work day, and squeeze my head together.

And on top of that I should study, do homework, find time for my guy, manage to keep the home in a livable condition, etc...

How do you guys manage this without the steroids?

Anyways, I'm sorry if I depressed anyone. Generally I try to be a very cheerful person, but being in pain for 10 out of 15 waking hours is just wearing me down :-/

Best regards,
Rosa

Title: Re: So I stopped my three month dose of steroids..
Post by brewcrew on Mar 30^th, 2008, 4:56pm

If prednisone (or other steroid) is the only path you've chosen, you are a long ways down the wrong road. Steroids are meant as a transitional therapy (10-14 days max) to be taken concurrently with other preventative drugs, which can take that long to reach theraputic levels.

Get off that stuff as soon as you can, and don't just stop taking them. The consequences can be disastrous. Talk to your doc about what longer term preventative you should start (like verapamil, lithium, etc.). Otherwise you will be in a wheelchair in 5 years - or less.

Title: Re: So I stopped my three month dose of steroids..
Post by Ungweliante on Mar 30^th, 2008, 5:14pm

It's not the only path, but it's basically the only one the doctors here have given me until now. I tried to get the public doc to prescribe Verapamil to me, but when I mentioned it, he just laughed at me on the phone and flat out refused. Same thing with oxygen, lithium and so on. In his mind, I'm imagining this and he prescribed me some normal painkillers.

Suffice to say that I'm not seeing that doc anymore. But it takes damn long to get anything done properly in Finland. I first saw him at the end of September, last year.

I also saw a private neurologist a couple of times, but until now he hasn't prescribed me anything but sumatriptans, both pills and injections, and steroids. First he thought that Indomethacin might help and I agreed to try that. It did help for a couple of months, but not anymore. Also he thinks that oxygen is the "last possibility" to try and says that lithium is not used widely against CH anymore. He does seem sympathetic though, and sent me to the public sector for a MRI, which was clear. Currently I'm waiting for the neurologist's epicrisis to take to the public health care sector, which refuses to do anything before they get it.

I've tapered the steroids down with time, and now stopped them after 4 days of 10mg / day. Honestly, though, I didn't know in the beginning that the prolonged use would have so bad side-effects. But there have been points at which life just seems impossible when you're unable to do anything for most of your waking time :-/

Title: Re: So I stopped my three month dose of steroids..
Post by CostaRicaKris on Mar 30^th, 2008, 6:15pm

The entire point of a steroid taper is to get some relief while another preventative kicks in. If you are ending the steroid without another preventative (verapamil, lithium, topamax) build up in your system, as you have already discovered you are in for a world of hurt. I was on a predisone taper and missed one night time dose because of my own stupidty and had a nasty hit.
I don't understand all these Dr.s out there that that think O2 is some crazy witchcraft last chance option. It's cheap, safe and effective. What is wrong with these people? (okay, calming down...)

I'm so frustrated for you right now....
~Kris

Title: Re: So I stopped my three month dose of steroids..
Post by Bob_Johnson on Mar 31^st, 2008, 9:07am

An amazing statement about a sophisticated country's medicine!

Print both of these articles and give to the doc. You have to show them that their standard of practice is massively out of date!
==========
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)

Title: Re: So I stopped my three month dose of steroids..
Post by Kevin_M on Mar 31^st, 2008, 11:07am

on 03/30/08 at 17:14:43, Ungweliante wrote:

I also saw a private neurologist a couple of times, but until now he hasn't prescribed me anything but sumatriptans, both pills and injections, and steroids.

Is there any way he can prescribe more injections for you, since he has previously prescribed them? That seems all you have without a preventative. The kudzu may help but preventatives suit each differently.
It seems he planned on the prednisone either breaking the cycle or getting you through a short cycle. This has not happened and longer term care with clusters needs preventatives.
Somethings that help with clusters may not make sense to a doctor, like oxygen, which they might associate with respiratory illnesses, verapamil with blood pressure, but they work for many aborting and preventing.

Quote:

He does seem sympathetic though,

Bob's articles contain a lot of great suggested care. Call him and tell him of your dilemma, he may be open to your dire need and read them, start a preventative, supplement your sumatriptan, or add oxygen possibly. Let him know things are going badly and predisone has done its short term job but NOW prevention and CH aborting are your greatest concern and need desparate help.

Title: Re: So I stopped my three month dose of steroids..
Post by Ungweliante on Mar 31^st, 2008, 4:35pm

To Bob: I think I will show those to the new doc. She's Russian, but might still know quite good English to read them.

To Kevin: The neuro will call me the day after tomorrow. I hope then to discuss things out with him, for example why the epicrisis hasn't arrived yet. I managed to contact the lead doc of the public healthcare clinic near here, and she said that things should work out once I get the epicrisis.

Also I'm beginning work on the first day. It might be that they have a work healthcare system, which I could persuade to write prescriptions for oxygen and Verapamil for me. Although kudzu isn't good with Verapami, I guess...

Anyways, I did forget one preventative the neuro did prescribe to me. It's called "Klotriptyl mite", and contains amitriptyline, which is a tricyclic antidepressant, and chlordiazepoxide, which is a central nervous system relaxant. Do you have any info on the use of those substances against CH? Are they supposed to be effective? I remember using the drug for around a week with the steroids, but it didn't seem to make any difference, except making me a complete zombie after taking it. The neuro said that I should take it before going to sleep.

Rosa

Title: Re: So I stopped my three month dose of steroids..
Post by Bob_Johnson on Apr 1^st, 2008, 9:22am

This is a good site, operated by a headache specialist, where you can explore the use of any particular medication for CH.

In addition, there are many articles to read.

http://www.headachedrugs.com

Title: Re: So I stopped my three month dose of steroids..
Post by Ungweliante on Apr 4^th, 2008, 4:26am

So, my neurologist called me a couple of days ago and promised me oxygen (!) and Verapamil. Also he apologized (!!) for forgetting my earlier call and promised to send the epicrisis right away. I'm really glad, a lot of doctors never apologize...and never would give oxygen either.

On a less great tone, I had to call in sick today. Woke up to a 1,5 hour KIP scale 7-8 attacks at 3:40 and 7:30 last night. I was just too exhausted to do anything after those. Mom thinks that I should start the steroids again, so that I wouldn't lose my job, at least until I get the Verapamil to start to work. I've been taking kudzu 600mg / day for a week now, and it's not really making a difference.

We'll see. I'm soon on the way to the health center to make the sick thingy official. Probably the nurse has never even heard of cluster headaches, though...

Title: Re: So I stopped my three month dose of steroids..
Post by Kevin_M on Apr 4^th, 2008, 6:36am

on 04/04/08 at 04:26:13, Ungweliante wrote:

It does good to communicate with a sympathetic but absent-minded doc. :) So far verap and oxygen. Stay in touch with him on the effectiveness of the verapamil, an effective dosage varies for each.
If you need any info or advice about oxygen, feel free to ask, many here are very proficient with its use into a non-rebreather mask at high flow. Catch the hits early if you can.
See what the nurse says about what to do in the meantime as you work in the verap but you have oxygen to work with, which can save you a lot of sleep.

Things should improve in time, best of luck with the nurse at the health center. If no predisone again for the next week, a short supply of sumatriptan injections again could help with any hits at work.

Title: Re: So I stopped my three month dose of steroids..
Post by CostaRicaKris on Apr 4^th, 2008, 8:35am

on 04/04/08 at 04:26:13, Ungweliante wrote:

So, my neurologist called me a couple of days ago and promised me oxygen (!) and Verapamil.

Sounds like you're on the right track now!! Too bad you weren't taking the Verapamil while you were taking the steroids. But, it sounds like you have a Dr that will listen to you and that's half the battle. Kevin is right, you need to stay on top of a Dr like that. My primary care Dr is the same way.

PF wishes ~Kris

Title: Re: So I stopped my three month dose of steroids..
Post by Ungweliante on Apr 6^th, 2008, 4:53am

Yeah, I think I will stay in touch with the doc :P

Anyways, I made it to the nurse and had a KIP 7 attack right then, at the clinic. We measured my blood pressure in the middle of the attack too and my systolic/diastolic values were 140/110. She said that there was no need for concern, but it got me thinking...the normal values are around 120/70 for me, so the diastolic is around 40 higher than normally. Have you noticed similar things during these attacks?

Also, so far Saturday and Sunday have been practically pain free! There have been some minor headaches, but I think those are from being at the computer too much ;;D Especially so because they're mild and both-sided.

Now it's just got me thinking, why? I began taking Indomethacin again on Friday night, hoping that it would at least provide some small relief. I think Indomethacin had helped during some weeks before Xmas...but then it kinda stopped. Anyways, I had a good night's sleep, something like 11 hours!

The analysis so far is:

1) Indomethacin works now, even though at some points it hasn't provided any relief?

2) Sleeping suddenly much longer than normally threw the beast off-balance?

3) I'm not chronic, but episodic, and the cycle is ending?

Fingers crossed that this would continue...

Title: Re: So I stopped my three month dose of steroids..
Post by E-Double on Apr 6^th, 2008, 8:14am

1) good luck
2) I may have missed it but written in the thread but I am pretty sure that you should not be taking Kudzu along with varapamil. BE CAREFUL

Regardless of what happens remember to breathe!

Title: Re: So I stopped my three month dose of steroids..
Post by Ungweliante on Apr 7^th, 2008, 12:07pm

Well, on Sunday I got a fairly painful both-sided migraine. Spent around 6 hours in bed, rolling in pain. Imigran didn't help.

Then again today, on Monday, I got an even more excruciating migraine, again both-sided. This ergotamine suppository has seemed to take it down a bit, but it's still painful. Began from the eyes and forehead all the way to the neck. At the worst phase it really made me want to scream. I've been running through my mind different possibilities why I get them...Indomethacin? Caffeine withdrawal? Rebound headaches from Imigrans I took on consecutive days? Sleeping long during the weekend?

So, I had to again leave work early and cancel out my medical training course. Sometimes it feels like the life is one big headache. At least tomorrow this letter from the neurologist should arrive. Then I'll make an appointment with the public doc and get some Verap. I'm sort of thinking of beginning the corticosteroids again, though...they make the normal things in life possible.

Rosa

Title: Re: So I stopped my three month dose of steroids..
Post by brewcrew on Apr 7^th, 2008, 12:25pm

on 04/07/08 at 12:07:26, Ungweliante wrote:

I'm sort of thinking of beginning the corticosteroids again, though...they make the normal things in life possible.

...for now.

My opinion - that would be a really bad idea. Any doc who would put you on a 3-month course of steroids for CH should have their license yanked.

Have you read up on the side-effects from long-term steroid use?

Okay, I'm done with this one.

Title: Re: So I stopped my three month dose of steroids..
Post by Ungweliante on Apr 7^th, 2008, 1:58pm

Just to clarify, the neuro did not put me on three month course of steroids, rather he gave me two courses and I took the prescriptions to the public doc, who renewed them.

Title: Re: So I stopped my three month dose of steroids..
Post by sandie99 on Apr 8^th, 2008, 9:07am

Rosa,

I'm so sorry to hear about that migraine! Sounds dreadful! [smiley=hug.gif]

But it does bring back memories from my indo trial: I got 8 hour migraines with it twice - that's when I decided to get rid of it. My UK neuro put me on indo trial in which the idea was to start with 25mg, then 50 and then to 75, but I stopped at 50, lowered the dose to 25 and then stopped. It didn't help me with ch at all and brought those migraines, which I hated.

Here's to relief & PF time,
Sanna

Title: Re: So I stopped my three month dose of steroids..
Post by Ungweliante on Apr 8^th, 2008, 9:25am

Thanks Sanna :)

I've been thinking too that the migraines might be because of Indo. We'll see. At least I got to work today :D

Title: Re: So I stopped my three month dose of steroids..
Post by Ungweliante on Apr 22^nd, 2008, 5:38pm

So, as it happens now, I was on Verapamil for 11 days but had to stop it. The constipation just got too great. I saw a doctor today who got one look at my stomach and the reaction was a clear widening of the eyes, followed by "Oh my god!"

No wonder. I looked like a walking Hindenburg :D

Anyways, the good news is that this doctor was also a neurologist, and prescribed me 100% Oxygen without any problems about it! It happens that he has a colleague who suffers from CH and so he knew a lot about it. I also gave him a printed copy of the migraine society info pack about CH, of which he was very thankful.

It's just such a great relief to find a doctor who takes you seriously. I even told him that I could hug him, to which he said that it's completely ok to do that. So we did :)

Anyways, the medication to try now is 300mg of natrium(sodium)valproate twice per day. I certainly hope it will help. Does anyone have any idea how soon the effect should start?

Rosa