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Topic: Please read my story... (Read 4726 times) |
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Special_K
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Please read my story...
« on: Jun 25th, 2003, 4:01pm » |
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I'll try to make a long story short, but if I can help one person stop suffering then I've done a good thing. I've been an epsodic C/H sufferer for 25 years. I saw doctors, chiropractors and quacks and found little relief. The only med that offered even minimal relief for me was caffergot, but not really. Last month (after a new cycle kicked in) I got off my butt and went to my family doctor. I complained that the caffergot wasn't helping much and that I wanted to give Imitrex a try. He complied and gave me some free samples (4 of them). He said call me when you run out and we'll see how it worked for you. Four days later I called and asked him for a script because it certainly was working at least as well as the caffergot. He again complied and called in a script for Imitrex. When I picked up the bottle at the pharmacy (with 4 pills in it) I was a little confused. I call him back to say "4 pills isn't going to last me through the weekend", but only to learn that you can only take 8 of the stupid things a month. -Back to the drawing board, this was not going to work either. Disappointed again I got a referral to a neurologist with whom I was sure I would find no further comfort. I relayed my symptoms to him (as I have dozens of times before to others) and thought about what a waste of time and money this was going to be. But then he asked me something that turned everything upside-down. He said "did you say that you preffer to lay down quietly during your headaches?" I've always known that that one symptom of mine differed from a "normal" C/H sufferer, but never realized that it was so significant. Then he asked if I'd ever been prescribed Indomethycin and I said that I had not. He then told me that he suspected that I had Episodic Paroxysmal Hemicrania (EPH) and that the only way to rule that out would be to take the Indomethycin and see whether it had any effect. Apparently the symptoms of EPH and ECH are so similar that the only way to diagnose or differentiate between the two is to try Indocin. If it works you have EPH, if it doesn't you have ECH. Well in my case it worked better than I could have dreamed. First headache free day was the 3rd day of treatment. Then, 1 headache (that's 1 headache) every other day for a week and then they stopped. I didn't even get the refill on the script. The cycle was done. Now, I know through some reading that EPH is believed to be extremely rare, but maybe there's someone out there who (like me) didn't get the correct diagnosis the first time and possibly could be going through the same thing I went through for 25 years needlessly. I hope I don't cause any false hope, but just please make sure you see a specialist that knows what he's talking about. It could make all of the difference.
Tks,
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Ted
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Re: Please read my story...
« Reply #1 on: Jun 25th, 2003, 4:12pm » |
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Very cool ending of the story. Glad that after all those years you're finally on something that works so well for you.
By the way, a better way to differentiate between the two, since they really are so similar, is the length of the attacks.
Again, I'm glad to hear you found yourself relief. And it was very cool of you to share this story with others who may benefit from it.
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| « Last Edit: Jun 25th, 2003, 4:13pm by Ted » |
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Karla
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Re: Please read my story...
« Reply #2 on: Jun 25th, 2003, 4:15pm » |
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Thanks for sharing your story special k.
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Karla
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catlind
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Re: Please read my story...
« Reply #3 on: Jun 25th, 2003, 4:48pm » |
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I'm very pleased for you! Thank you for sharing your story and trying to help out others who may be suffering with a misdiagnosis! I hope you enjoy many years of pain free times 
Cat
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Bob P
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Re: Please read my story...
« Reply #4 on: Jun 25th, 2003, 5:40pm » |
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Anyone on this site who hasn't tried Indocine to rule out CPH is nuts! It's so easy and cheap. I've always felt that there are a lot of people suffering here needlessly. They are trying to treat CH when they really have CPH.
Try Indocine, then move on to CH treatments if that doesn't work.
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OneEyeBlind
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Re: Please read my story...
« Reply #5 on: Jun 25th, 2003, 5:52pm » |
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That's for sharing SpecialK !!! Pretty cool ending to the story too !!! Many pain free days and nights ahead for you !!!!!!
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Robert
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Re: Please read my story...
« Reply #6 on: Jun 25th, 2003, 7:09pm » |
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Hi,
Are you saying that you do like to lay down when you are getting you CH. Can you tell me how you are to take Indocin, how much and how often. What is the difference between EPH and ECH.
So glad to hear that you found something to work for you.
Thanks
Bob F
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Charlie
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Re: Please read my story...
« Reply #7 on: Jun 25th, 2003, 8:33pm » |
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Thanks for the story and it's great you found help.
By the way, no one lies down during a cluster attack unless he's dead. I'm not sure what your doc was asking.
Stick around though and tell us how things are going.
Charlie
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Elaine
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Re: Please read my story...
« Reply #8 on: Jun 25th, 2003, 8:50pm » |
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I didn't know Imitrex came in a bottle. Mine always came in a pack kind of wraped in foil ! I learn something new everyday.
Bob P I agree with your post!
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forgetfulnot
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Re: Please read my story...
« Reply #9 on: Jun 25th, 2003, 9:24pm » |
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[quote][By the way, no one lies down during a cluster attack unless he's dead/quote]
I must be dead Charlie, I do it all the time. 
Lee, from the other side!
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Azrael
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Re: Please read my story...
« Reply #10 on: Jun 25th, 2003, 10:40pm » |
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I agree with Bob... Anyone suspected of having CH or any other TAC should definately give indomethacin a try. It is recommended and nearly always effective for Paroxysmal Hemicrania and Hemicrania Continua. It is also sometimes effective for Clusters or SUNCT. One major benefit is the low cost... I don't know of any triptan or any other cluster med that is anywhere near as cheap as indomethacin. One drawback is stomach irritation, so make sure you take it with food, milk, or good antacid.
PFDAN........................................ Drk^Angel
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Kasey4
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Re: Please read my story...
« Reply #11 on: Jun 26th, 2003, 7:32am » |
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Om my god, I think I'm going to cry!!
I am calling my doctor this morning and getting this stuff!!
I have to be "still" during a cluster (can't lay down but I don't rock and roll either).
After 25 years of this crap I may not have CH at all?
I haven't even been to a doc for these in over 6 years because once I got my Imitrex statdose I was happy (or as happy as one could be with unbearable pain) but I am going and asking for that ....... whatever it was!!
Thank You, Thank You, Thank You!!!!
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Special_K
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Re: Please read my story...
« Reply #12 on: Jun 26th, 2003, 7:53am » |
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Just to clarify a little bit on my case...
I have always preffered to lay down in a dark, quiet room with my headaches. When I told the neurologist that, he picked up on it right away as being something that is out of the ordinary for C/H sufferers. That is why he recommended that I try the indomethicin. As far as the treatment itself, he prescribed 50mg pills. I took 2 pills (100mg) the first day, 3 pills (150mg) for 2 days, 4 pills (200mg) for 2 days, then 5 pills (250mg) until they ran out. You ramp up from 100mg to 250mg per day. I didn't really have much trouble with side effects except sort of a "drunk/dizzy" sort of feeling. No abdominal problems for me at all. I think I paid something like $4 for the whole bottle (60 pills).
A couple other things about symptoms that may be telltale. As mentioned above, my headaches (the excrutiating pain part) only lasted about 30-45 minutes and I was having 3 or 4 a day. I usually had only one cycle of headeaches a year that lasted about 6 weeks. Also I would have pain/pressure and tightness in my neck preceding and during the cycles. That made me feel like I needed to "crack" my neck allot. I guess that maybe the inflamation in that area is what the indocin works on.
Also, you are right about the Imitrex comming in foil packs, they just put four of those packs in a bottle for me.
Anyway, I just wanted to get some information out since I thought there might be others out there who like me had up to now never even heard of EPH/CPH. If so, I'm glad to at least hopefully get some discussion going and maybe get a little information to some folks.
I wish you all the best!
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Kasey4
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Re: Please read my story...
« Reply #13 on: Jun 26th, 2003, 8:03am » |
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Special K - you are describing my attacks to a tee! (neck pain, HA lasting 45-60 min. each w/o Imitrex injection, wanting the world quiet, etc....)
I have a call in to my doctor - just waiting for the phone to ring.
I did some quick research on Indocin, and have questions if you know: Do you have to stay on it indefinitely or did you quit once the HA episode was over?
The only bad part I can see now is that I am nursing and can't take it. I'll talk to my MD about that.
Also, I am (hopefully) almost done with my cycle. Will it have less effect if I'm this far into cycle? I tried Prednisone before and it didn't work because of that. (also it made me a bitch on wheels).
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Special_K
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Re: Please read my story...
« Reply #14 on: Jun 26th, 2003, 8:42am » |
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Kasey,
I'm no expert on this since I've just tried it myself. In my situation I was into my episode for about 3 weeks before I started taking the indocin. It was only a 2-3 days before it started breaking up the attacks, and really only about a week before my episode was over. I think it took me about 2 weeks to take all of the 60 pills, but at that point I hadn't had a headache for a week. I was pretty sure the episode was over so I didn't refill my script. I stopped taking it when I thought my episode was over. I guess at this point I feel like I'll just wait till I get another episode and start on it again. I hope it's not till next year. I don't know if indocin is prescribed as a preventitive that you would continue taking indefinitely as my situation wouldn't really warrant that. I was getting one episode a year and it stopped so I stopped taking it.
One other thing that I'll note here. One of the BIG triggers for me is alcohol. During an episode any drinking is a guaranteed headache, but I was able to have a couple drinks while on the indocin without it triggering a headache.
Hope this helps...
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Azrael
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Re: Please read my story...
« Reply #15 on: Jun 26th, 2003, 5:01pm » |
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Actually K... Lying down during an attack isn't a sign of Paroxysmal Hemicrania. All TACs have similar effects on people, including the need to move, pace, bang your head, etc... You may just be different in that case.
Also... 30 - 45 minute attacks occurring 3 or 4 times a day is more inline with Clusters than PH... And many clusterheads report feeling the need to crack their necks (although this part isn't in the official diagnostic criteria).
If I had to guess, from how you describe your HAs, I'd say your more likely to suffer from Clusters than Paroxysmal Hemicrania. Maybe you're just one of the rare ones that gets relief from the beast with indomethacin.
PFDAN....................................... Drk^Angel
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Robert
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Re: Please read my story...
« Reply #16 on: Jun 26th, 2003, 8:03pm » |
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Hi Again,
Just a question about the indosin. Did you take your daily dose all at one time, or did you spread it out.
Thanks for all the info, it's definetly worth a try.
Bob F.
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don
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Re: Please read my story...
« Reply #17 on: Jun 26th, 2003, 8:13pm » |
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Special K,
Your post may have have just changed the lives of a lot of suffers. One of the most significant, selfless, and beneficial contributions I've seen here in a long time.
Heres wishing you a lifetime of painfree years.
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| « Last Edit: Jun 26th, 2003, 8:14pm by don » |
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KILLmeNOW
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Re: Please read my story...
« Reply #18 on: Jun 26th, 2003, 9:20pm » |
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Very well said.....Doctors seem to be cluless for me also. I had to go to the ER one night cause I couldn't walk or talk very well. The dr. thought I had a reaction to advil!!!!!!!!!!!!!!! He gave me a shot of benadrly. I could have strangled him....if I could. Jeremy
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don
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Re: Please read my story...
« Reply #19 on: Jun 26th, 2003, 9:53pm » |
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benadryl can be helpfuk but not in and of itself. Combined with a good preventative it can provide you with some sleep time.
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JohnM
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Re: Please read my story...
« Reply #20 on: Jun 27th, 2003, 4:54am » |
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This is real "cat amongst the pigeons" post!
I have been looking at lots of stuff on the internet on EPH/CPH since reading this post, and I still seem to firmly fit the profile of CH.
My HA always last for several hours without Imigran injection, I never have short HAs. I usually have at least a year in remission.
But.... I also prefer my bed in a dark room during an attack to the rocking/pacing so many report here. I do have a comtinuous "dull ache" between untreated attacks (when I manage to tough it out)
I have not tried Indocin, but will do so immiediately if (when) I am next in cycle .
John
here is an interesting snippet to confuse you more:
Department of Otorhinolaryngology, Head and Neck Surgery, University of Nottingham, Nottingham, UK.
Paroxysmal hemicrania has been described as an excruciating unilateral pain, which is usually ocular and frontotemporal with short-lasting (2-45 min), frequent attacks (usually more than five per day); with marked autonomic features (rhinorrhoea, nasal congestion, conjunctival injection, lacrimation) and unilateral to the pain. A response to indomethacin is essential using the current criteria for the diagnosis. It is a rare condition but when it occurs it is misdiagnosed as being due to sinusitis. A retrospective analysis of 11 patients seen in the period 1995-2001 suggests that there is an overlap between paroxysmal hemicrania and cluster headache. Four patients had all the characteristics of paroxysmal hemicrania and responded to indomethacin. Four other patients fulfilled the criteria except for the frequency and length of the attacks. They only had one attack per day and these lasted more than 2 h. Another patient had all the symptoms of paroxysmal hemicrania and did not respond to indomethacin, but responded to triptans and pizotifen. Patients with cluster headache typically respond to these. Two patients were unable to continue taking indomethacin owing to severe gastrointestinal upset. In the same period, we also had 30 patients with cluster headaches. There is increasing evidence that paroxysmal hemicrania and cluster headache share a similar pathogenesis and that they may not always be so discrete in either their response to indomethacin or their periodicity.
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Special_K
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Re: Please read my story...
« Reply #21 on: Jun 27th, 2003, 8:18am » |
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I hope I haven't ruffled any feathers or given false hopes here because that's not what I wanted to do at all. Just thought maybe 1 or 2 others might be in the same boat as me.
For Robert, you take the Indocin twice a day, morning and evening with food (1 and 1 first day, then 1 and 2, 2 and 2, 2 and 3).
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