I am still awaiting on formal diagnosis with a neuro, a referral letter has been sent from my GP to book an apointment....

However my GP & I are sure I'm a CH :(

For the mean time I have been perscribed with 'Sumatriptan' a 100mg tablet. I have been told to take 2 tabs at the start of my attack. The problem is I am only allowed 2 tabs a day! Only 1 attacks worth.. did not sound appealing to me.

So I suggested oxygen, however in return was told it would not work!!! When I first posted on the 'getting to know ya' board this was recommend by nearly everyone! This made me loose my trust in her to say the least..

I then settled with the 'Sumatriptan'. I handed over my perscription at the pharmacy and was asked if i had ever taken this before, of which I replied no. The pharmasist then said the dose was very high and he would go check with my doctor that this was correct! The doctor agreed with the dosage.
This has worried me.. I am struggling to understand how they can perscribe medication for something they know soo little about!!

I have also been told there is other medications I can try if this fails. I'm only 19 and do not like the sound of feeding my body with so many different medications in a trial and error experiment!!
On the other hand I'm willing to try anything to make it stop!

Today is a bad day.. Maybe I am just ranting  :'(

100mg is the higest oral dose. I would NEVER take two at the same time. One, why put yourself in that kind of a position, doubling the dosage of a pretty strong vasoconstrictor, and 2) why waste it if you might need it later.

I'd give it one more shot with your GP. Print some of the most relevant stuff from the oxygen info link at the left of your screen, give it to her, and ask again. If she still says no, find somebody else.

I'm with Bill.  But I would wait till I had an appt with the Neuro before dumping the GP.

It does not suriprise me that your GP is balking at O2.  From my experience, most of them do.  That's why it's important to meet with a Neuro that knows something about CH.

The high dosage of Sumatriptan makes me suspect everything your GP says including the dx of clusters.  I'm not saying you don't have them I'm just saying, based on her refusal to perscribe O2 and the bad triptan perscription it sounds like your GP is way out of her depth on CH.

I hope your Neuro appt happens soon.

-Dennis-

In the meantime if you're looking to get relief from those 100mg tabs, I would break them in half to get roughly 50mg each time you take it.  This is what I did years ago.  The only way I got relief from these pills was to take it about 1/2 hour to an hour before I knew one would come.  YOu certainly DON'T need 200mg to kill a cluster.  You're playing with fire and you could get rebound headaches from a dosage that high.  If you have onset symptoms (shadows), Imitrex tabs won't work.  Energy drinks, O2 or the Imitrex injection is the best thing at onset.

Hope everything works out with your GP.

Search for that neuro though.

Cheers,
Chad

I feel the same as you dennis!

At first I felt lucky that my GP had picked up on Ch soo soon. Now I feel that I'm back to square one. Well at least till my neuro appointment.

I also have a second question, Shadows, What are they? Is this the burning feeling in my head that is there all the time?

A pill dose of 200mg is not appropriate, per U.S. standards of practice. But you don't have to tell the doc that you only took 100mg!

But, the pill form is the least effective for Cluster, in our collective experience. The injection form is the best, by far, followed by the nasal spray (used with correct technique.)

Re. oxygen: what follows are medical sources of information which you can print and give to your doc. (It's always best to use medical sources, when you can, in negotiations with a doc!)

==
The National Headache Foundation:

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

The Mayo Clinic:

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

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

Dr. Lee Kudrow:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 1001.x?journalCode=hed


On 02-15-05, the American Family Physician published the article "Management of Cluster Headache" by Dr. Ellen Beck, Dr William Sieber and Dr. Raul Trejo. In the Acute or Abortive Treatments section, it states that oxygen and sumatriptan are the "treatments of choice for acute cluster headache."

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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Headache. 2005 Jan;45(1):98.   


CLUSTER.

[No authors listed]

Rozen TD. High oxygen-flow rates for cluster headache. Neurology. 2004;63:593 The two most effective cluster abortive agents are injectable sumatriptan and inhaled oxygen. Because most cluster headache sufferers are cigarette smokers and at high risk of coronary artery disease, many develop contraindications to triptans. Oxygen, the safest of all cluster therapies, is not effective for every patient. In Kudrow's landmark study, 75% of patients responded to 100% oxygen at 7 L/min, although only 57% of older chronic cluster headache patients had relief. A recent study documented a gender difference in response to oxygen because only 59% of female cluster patients responded to oxygen, whereas 87% of men did. In most textbooks and articles on cluster headache treatment, patients are instructed to use 100% oxygen via a nonrebreather face mask at 7 to 10 L/min. The rationale behind this prescribed oxygen-flow rate is unknown but has become doctrine since the Kudrow study. Prescribing higher flow rates of oxygen up to 12 L/min has recently been suggested, but there is no documentation that this may improve efficacy. Higher oxygen-flow rates (up to 15 L/min) are not known to benefit cluster headache patients refractory to standard oxygen therapy. Three cluster headache patients who demonstrated no response to standard oxygen therapy were exposed to higher flow rates of oxygen (14 to 15 L/min) to assess response. Comments: Once again, Dr. Todd Rozen's observations will change my clinical practice!-Stewart J. Tepper, MD I have questions: Were these empirical observations or do Drs. Kudrow and Rozen know how rate of flow affects oxygen delivery? Is oxygen uptake higher with higher flows? After all, 100% oxygen is 100% oxygen unless under hyperbaric pressure! Perhaps higher flow rates dry the nasopharyx to a greater extent. If patients perceive a higher flow rate, might this be an enhanced placebo effect? It seems like an interesting study to be conducted, and it would be useful to test if using nasal cannulae is just as good. Pulse oximetry and arterialized capillary blood gases could be used to monitor oxygen saturation and CO(2) retention/carboxyhaemoglobin levels in smokers.-David S. Millson, MD.

PMID: 15663630 [PubMed]
====

Finally, please reexamine what you mean by "experiment" re. using meds. Those of us with cluster often spend years changing meds and doses in an effort to find meds which are effective for us. For reasons which are not understood, our bodies will not work with one med (which other folk find effective) and/or one which has been effective for us stops working. Then, you have little choice except to try others (or live with the pain).

The greatest danger is  misuse of meds--changing doses  and mixing meds without medical guidance.
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Print the PDF file, below:

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Katie-Marie wrote on Jan 26^th, 2010 at 12:35pm:

Is this the burning feeling in my head that is there all the time?

You got it.  It's the preliminary HA before the next phase (the actual cluster) kicks into high gear.  I call it a "tingler".  That's the warning sign.  A "shadow" can linger all day long sometimes.

Agree with what others have said.  I've been using Imitrex for 20 years (shots, nasal spray, and pills) and have never even taken 100mg per dose much less 200mg.  I didn't even know that they had 100mg pills, I've only ever used 25mg and 50mg pills.  Definitely buy a pill cutter and only take half of 1 pill.

I know that Imitrex pills are the least effective form of this medication (shots being the best and spray being second best), but it still can help.  It all depends on the length of your attacks.  For me my hits last between 1-3 hours, so if I take a pill at the first signs of a hit and have to wait 30 min for it to work it's still worth it to me.  Sure, if your hit lasts 20-60 min it's not going to be a good choice.  You should absolutely bring the O2 info back to your Dr to try to get an O2 script.

Good Luck

If you try to use the pill form as an abortive, you'll have very little success. But once it aborts, I think it keeps attacks away for about four hours, which is a little longer than the injection or the spray.

Let's not confuse "better" with "quicker."

"Better" is a value judgment.

Brew wrote on Jan 26^th, 2010 at 5:08pm:

If you try to use the pill form as an abortive, you'll have very little success. But once it aborts, I think it keeps attacks away for about four hours, which is a little longer than the injection or the spray. Let's not confuse "better" with "quicker." "Better" is a value judgment.

The pills I do have left I use when going out to dinner or something so my fun isn't spoiled by a darn CH.  I will take it before I go out as a couple hour prevent.  I have noticed that is does work longer.

hi Katie
I just wanted to say good luck getting your neuro appointment , I took so long to get mine I was out of cycle by the time I went to see him so I have to wait for the next cycle to see if his suggestions work.

BTW If your health service uses the choose and book system be careful booking cancellations it may be for a neuro teem but not necessarily a neurologist. I ended up in an ME clinic which obviously was no help at all ;D just an annoying wast of time.

Good luck
Nigel