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

  Hi Frankie,   forvatriptan is a long lasting triptan witch is normally use to abort an attack not the best triptan for ch it takes to long to start wofking,  but it sounds like you are useing it as a preventive witch could be causing rebound ch's.  You said your dr. suggested injections are you talking Imitrex or something else Imitrex is the #1 triptan for ch the injection works very fast,   Have you tried oxygen this is the best abortive for some and the side affect are low.  The diclofenac is a NSAID I think,  I havn't tried this and havn't heard this helping with ch.  Find a good preventive like Verapamil and an abortive like oxygen and Imitrex.  You can find a list of meds under the headache link to the left.
            Phil 8-)

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

Welcome to the nuthouse. I'm not familiar with the meds you're on but the advice the first 2 gave you makes sense. There are some popular preventative meds you might want to read up on and talk to your doc about. Verapamil, Lithium and topomax have helped many on the board. Verapamil, at higher doses then most docs are used to, has been effective for many. I use lithium at 1200 mg a day while on cycle and for many years it's been a very effective preventative med for me, blocking up to 80% of the hits with very little in the way of sied effects.

I will second the motion on oxygen. 30 years of dancing with the beast and it's still my first line and most effective abortive. We're seeing about a 70% success rate on the board so it's certainly a good percentage bet to try.

Stick around, knowledge is king. We have a saying on the board that sitting down in front of your doc and saying "fix me" is a recipe for many painful nights. Educate yourself and form a working partnership with your doctor.

Guiseppi

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.

O2,02,02
all the best
the bb

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...

Thanks for all the advice,i have not disscused O2 or imitrex with my GP and he has not mentioned it to me, i think he is tying his best but i dont think he knows quite how to tackle this himself,do i need to look at an preventetive that i take every day and an abortive for when it really kicks in, at the moment i am living with shadows constantly everday and only taking my meds as and when i need to when it gets to much to take, it would be great to have something to take daily to keep the shadows at bay as well as helping when it gets to much.
thanks agian
frankie

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.






 

Hi Frankie and welcome.

I had to go to ER two weeks ago, I was given all kinds of meds i.e. Relpax, Maxalt, Imatrext and O2. Out of all that I was given the O2 worked best of all with out any of the side affects that the meds bring on including rebound headaches. Kinda a pain in the ass getting the O2 in the house when you dont have insurance and what not BUT it can be done, you just have to be cleaver, which after an attack is the last thing you want to be, but it is worth it. Much cheaper than the meds, each pill was at least $25.00 per dose, so the initial expense of the 02 pails in comparison, and again no side affects and works very fast.
Folks here have a lot of info on 02,
Best luck to ya hot rod
Rick  ;)

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!!!!!!!

Hi Scot
First of all how are you mate i read your post the other day and as newbie myself i did not know or have the knowledge to reply i hope you are ok,i had a spell in A&E and after about 6hours they put me on O2 and hey presto, i have a GPs appointment Thursday and im going to talk to him about Imitrex (sumitriptan)injections and O2,i have noticed as you have that the CHs are getting more fequent the shadows are there all the time now no letup at all only when i can get some sleep but most of my  CHs come late at night or very early morning so sleeping while in a cycle is a delicate balancing act.I see that i am very local to you i live in ASCOT maybe we can metup at some point.

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

Scott, since you are already aware of our resident witch advocate, why aren't you on OXYGEN???  Hmmmm?(Has our Helen now become a SLACKER?  LOL)  

Oxygen is SO much better, safer, cheaper that Imigran!  Save the Imigran for those difficult hits.  Use the oxygen as your first line of defense against the beast.  Use the Imigran as second line.

Good luck!

Chuck, the pusher

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.....

Hi all
I have just got off the phone to my cousin who is a GP in the midlands and he told me that it is very rare for a GP to give out O2 for home use without the consulation of a neurologist,he did admit to me that GPs do not study CH as a matter of course but lump it in with migrains as they are not run of the mill headaches and are very patient specific as far as meds go he did tell me that there is a drug that is not  used very much any more that may be of some use ammyltripterlean dont know if i spelt it right but GPs used to use it as pain relief to get people through the night. yes i did manage to get O2 from A&E scott i never had O2 up till that point and did not know what effect it would have but god it was good i didnt have to push for it,it was offered to me after about 1 hour.my GP is allthough in the dark as to how to approch this has allready offered to put me on sumitriptan injections if the frovo dont work i think this may be the next move for me.
If i hid any major probs then i will give Helen a call.
Scott maybe we can meet up at boxhill one sat/sun for a coffee.