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alexcpn

Cluster headache - my journey

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I wrote it for the internet to index and others to find. I am hoping it would help others, not only in the forum but outside as well. 
https://medium.com/@alexcpn/run-for-your-life-run-for-joy-7d7397cc46fe - though it is in medium it is set as free. I live in India in Bangalore and I consulted neurologist Dr Thomas Mathew at St Johns Medical College Hospital. ( my first episode was around 15 or 16 years back and last would have been around 7 or 8 years back. I do get periodic headaches but of very less intensity; it used to happen in weekends and I  never thought that it was this. I was going after weekend headaches and so on. But it seems to be kind of morphed to this puppy now; as half a pill of Sumatripatan and Naproxen tablet fixes it and no other migraine or over the counter pill fixes it. But it is a toothless puppy now; so I guess with some time and age it should fix 

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Very glad that you have found relief, Alex, and you tell the story exceptionally well in the Medium article.  I hope your very good writing might help other people toward a correct diagnosis. 

I think virtually everyone here would be stunned to hear that a pill of sumatriptan and naproxen is sufficient for you to treat your attacks.  Clearly Dr. Mathew is not a typical clueless neurologist, since (as you say in the article) he first prescribed oxygen (which you chose not to take) and he understood that triptans are very helpful for treatment.  (Just as a side comment, oxygen is not a cure for CH, as you say in the article. It is a way of stopping attacks.)  You mention that the prescription was complex with varying pill combinations, so again, we can't conclude that your doctor was just throwing things at you.  I hope that it continues to work for you, and I thank you for sharing your information here and in your article.  

 

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Thanks a lot. 

>>  think virtually everyone here would be stunned to hear that a pill of sumatriptan and naproxen is sufficient for you to treat your attacks. 

This is something strange. But that was not Dr Thomas Mathews prescription. Let me clarify better. My initial attacks were very very painful after I told him that it could be a cluster headache, he gave me calcium channel blockers and other drugs.

Here is the actual one https://docs.google.com/document/d/1ickT1nI6i4AUxpA0nZtvDbH9R27UYgswJy4rZ_l_cVQ/edit?usp=sharing

Okay I did not want to share that prescription in full detail here, as I don't know the rules of the forum earlier. This I took and it released me from my first episode. This was around so many years back 2009 I guess. After that I had the same intensity around 2 more times, each episode is like years separated - one in 2013 I believe, it was my last of the very painful ones.

I had moved my house then and I could not go to see the same doctor again as I was not well enough to travel. So I phoned him and used the same prescription and again it worked. It worked two more times.  Note that each prescription duration was about 2 weeks. After that, it is stopped.

Now regarding the weekend headaches. Note that I have had headaches since I was an adult. My father also suffers, he tells he has migraine. I am not sure. For him over the counter caffeine + paracetamol works. However, these did not work for me for the weekend headaches. It occurs after I have my lunch. I thought it was a glycaemic induced headache, as weekends I do not work and hence excess glucose or excess insulin or basically some imbalance. So I have reduced eating for example too much rice etc, and sugars and that was my theory for long.

Till until say a year back and I started thinking that this periodicity was the one that led me to really find that it was cluster headache for my earlier headaches. But cluster headaches are near 9/10 in pain scale. But this weekend headaches were about a 4 or 5 out of 10 in pain scale. It was not that painful, but dull enough that it made me really tired by evening.  So I thought that this could also be sometimes cluster headache in a morphed way. And I went to a doctor nearby and he told me to take this sumatriptan and naproxen and check. I have read that only injections of sumatriptan are effective. https://ehf-org.org/wp-content/uploads/2013/11/Cluster-hedache-treatment1.pdf

And of course, none of the over the counter or other pills were effective against this, even the migrane one ergometrine.

So I tried this, usually effective if taken at the first subtle signs and less effective when it is fully developed; and it works. I know I theorize a lot; it could be something else too.

 

 

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When you had written somewhere (in your post or in your Medium story) about testing drugs for about two weeks, I imagined it had been prednisone that you had been taking, on a standard "taper" schedule. And so it is.  It is good that you had such success with prednisone. More often, it relieves the pain for a while but then the pain comes back.  It's not clear to me exactly what you are doing now, but please be advised that taking a prednisone taper more than once a year is risky for your long-term well-being.  It can create a condition called avascular necrosis, in which the bone at joints (knees, hips, shoulders) dies. Many people with CH who were overtreated with prednisone have developed that condition. I doubt that your "weekend headaches" are cluster headaches. It certainly would be a very rare pattern.  But I have no suggestions about what they might be.

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