Hi everyone im newish to this site and was wondering if you could help me with some advice,i have a gps appointment thursday and im not sure what way to go.
I am currently on frovotriptan twice daily along with diclofenac ,my ch attacks seem to be getting more fequent and more intense mainly in the evening/late at night  or early morning.
My GP is talking about self injecting but at this time im not sure what with along with a trip to the neurologist, any help would or advice would be great.
Many Thanks
Frankie

You're using a long-acting triptan on a daily basis. This will lead to increased attack frequency and it helping less and less. The daily use of diclophenac will most probably lead to it helping less and less as well, as well as you getting a constant background headache after a while. This is also called "medication rebound headache".

I'd advise you to try to stay a while without medications, two weeks to a month or so. Or at least cut the amount from a daily one to a couple of times per week. Using oxygen to abort the attacks would be a far safer choice than the frovatriptan, as it doesn't make the CH worse a little by little.

I'm wishing you luck!

- Best regards and PFDAN,
Rosa

Hi, Frankie.  Imitrex has been a wonder drug for me.  However, I experience a bad side effect (nausea) if I use it too much/often.  And it loses its effectiveness if used daily.  To me it's a nasty drug that I should use as little as possible.  But when the pain hits hard, we do get desperate.......I'd rather throw up and be done with the pain.

My neuro wanted me to try the very first Imitrex injection "under care", meaning either in her office or in Urgent Care.  She wanted to make sure my body could tolerate it without serious side effects like a heart attack.  I induced an attack and ran to the Urgent Care.  Imitrex was administered by a nurse who monitored my response/reaction the whole time.  I used the whole pre-measured dose per use (6 mg) in that cycle without an issue.

Since then I developed intolerance or sensitivity to it and found out that 1/3 a shot is sufficient to abort the headache without making me throw up.  So my neuro as well as my primary prescribe "multi-dose vials".  I use disposable insulin syringes.

Besides being "body unfriendly", Imitrex is still very expensive, and many insurance companies limit the number of pills or injections per month.  Whether you see a neuro or not, my suggestion is to find the lowest dose that's effective in your case.  If we don't need to use the whole thing (whether 6 mg or 4 mg), I feel it's our best interest to use as little of it as possible to save the heart and the rest of the body, regardless of presence of side effects.

O2 is highly recommended.  A minor sore throat for a brief period of time is about it, if used within reason (meaning don't use it for too long at a high flow rate or fall asleep on it).

What kind of preventive meds at what dose work the best for you is something you and your doctor(s) need to work out.  Verapamil has worked well for me to reduce the frequency and intensity by far.

You may also want to look at the thread in the medications/therapies section titled Kilowatt3. Some people have had success with the formula in that thread.

I'm waiting until my body has calmed down from my latest allergic reaction to try it...

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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If you decide on a neurologist be sure to find one who has experience with headache. Many of them do not have adequate training/experience.


LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.






 

I can't really give much advice as I'm a newbie on here as well....

However, I've been using Imitrex injections since Wednesday of this week, they have stopped every hit within 10 minutes, even those really nasty ones that want to make you dance at the wee small hours...

I was very dubious to start off with, especially at the thought of having to self inject, but after a couple of goes it's a piece of cake...and the main thing is that is works!!!!!!!

Hey Frankie,

You got O2 from A&E??? How the hell did you manage that?? Wen I used to go to A&E I was always told that I wasn't an accident or an emergency and that I should see my GP for some codeine based painkillers.....
Even now I have great difficulty with my GP, I only got the Sumatritpan on Wednesday and she point blank refuses to precribe me O2....according to her, which I now know to be a complete pack of lies, only a Neuro can prescribe it, and even then only after having blood tests....
Strangely I haven't had as many hits the last couple of days as I usually have, I'm not sure if this is down to the Sumatriptan or not, either way it's great to have some Pain Free time!!!
I hear what your saying about getting to sleep, your damned if you do and damned if you don't, the thing I would recommend is NOT dosing during the day, if I had bad nights when I was only getting a couple of hours sleep, I would try to grab an hour or two during the day, but 15/20 mins after waking up.....wham.....the beast would have dancing like I was a rabid animal.....
I've been told to take Ibuprofen to help with the shadows, I ran out the yesterday and could only find some 'Sudafed PE' which I used to take all the time when they thought I had 'Sinusitis'. I actually found that these worked better on the shadows than the Ibuprofen....
Try it out, they make work, they may not, but I'm pretty sure swallowing 2 of the buggers ain't going to kill you...
As for meeting up, sounds good to me, haven't met a fellow clusterhead yet and it would be good to meet someone who relates.
Have you spoken to Helen(LeLimey)? If you need any help or advice, this is the woman to speak to, she literally is an angel in disguise, if she can't help you, she'll probably be able to point you in the right direction...

Hope to hear from you soon, wishing you some PFDAN's!!!!

Scott

Chuck,

Believe me I have tried to get O2, all I want is O2, all I think about is getting O2......

I am having MAJOR difficulties in getting medication from my GP, I go in armed with all the info I have got from hear only to be told she wasn't going to look at it.....
But then again she is a real bitch.....On wednesday when I went, the first thing I asked when I walked in was if she knew about cluster headaches, she insisted that she did, she went on to say I didn't need Sumatriptan injections and I needed to see my Neuro (I had already booked an appointment but couldn't see him until 13/11) I told her I needed them, end of, I'm not leaving until I get them. She gave me 2....
Anyways she then went on to tell me to leave as she had people that needed her attention more than I did?!?!? I asked if she realised how much pain I was in.....She said it wasn't really that painfull and I would get over it, or something to those effects.....
For the record in the waiting room there were 2 mums with kids who had nits, they came in to see a doc as the price of over the counter stuff was too expensive, another woman with a small child who was happlily playing around and a young lady......yep, they all looked in much more pain than me, and all surely must have had the same suicidal thoughts as me....


..and yes, Helen is on the case, she has very kindly said she will come with me to the Neuro on Thursday if I want, which I may well take her up on seeing as she knows so much, she has also taken the name of my mp, docs and pct to take some action.....