I started a thread last week which, of course, is now deactivated (read-only), but I'd like to give some feedback to my experiences since then (many thanks to "AlienSpaceGuy" right now!)...

As I'm in Switzerland, I found that the availability of the medications & treatments here are quite different to the 'States. For example, Verapamil seems to be hard to come by and was replaced by Isoptin (3x80mg a day). Also, O2, while available, can only be supplied by very few drug-stored (I found one in Zurich and picked up a 10L bottle yesterday). Hospitals seem to refuse giving O2 out for home consumption and require a visit to the ER during an attack... not for me, as the attack will be done by the time I get there and I can't ask my wife to drive and leave the kids alone at 3 am!

As for Neurologists, there are only a few in my area who really seem to know their way around CHs (see this thread for others if you're in the Zurich area: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). the one I called is booked-up clear through August! Well, I should assume my current cycle will be over by then.

Anyway, the O2 and the Isoptin seem to be helping (especially the O2) adn I'm picking up some nasal spray (can't remember that name), which my doc prescribed. Fingers crossed!

While I'm on the topic of "foreign" treatments ... are there others in the Zurich area who would share their experiences?

Thanks!

Roger

We commonly refer to meds by their brand name which is misleading once you leave the U.S. The same med will usually have a different brand name in other countries and so it's best to compare meds by their generic name.

The issue of a lack of skilled docs is an eternal subject of discussion here. If you can find a doc who is willing to learn from you, via medical literature which we can supply to you, that will be to your benefit. Many of us have had to teach our docs so that they can treat us effectively.

Here are a couple of documents which you can print out and share with your local docs.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
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. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
(Thanks to "cluster" for link.)

Hmmm...  Another guy who likes to breathe air under water?

Send a PM to Wildhaus (Michael), he lives in Wildhaus, Switzerland and knows the ropes.

V/R, Batch  

Hi Roger,

Verapamil is the generic ("chemical") name of the stuff we swallow. It is marketed under about 50 different brand names worldwide. In Switzerland it is Isoptin or Flamon.

There is so much to say re Oxygen, Neuros, etc. that we do it best on the phone; see your PMs for my number.


                 [smiley=smokin.gif]

Thanks to all you guys for your replies and the 3 PMs I received! I'll contact you in due course, either by return PM or by phone.

Suffice it to say for now that I had the first opportunity to "test" my O2 bottle during a night-time (i.e. sleep-time) CH attack last night and was amazed at the almost immediate effect it had! 10 minutes with 9 liters per minute and I was back asleep. Of course, it would be better not to have any attacks at all, but given the situation it's quite a relief.

One question to you chemists out there: I have, over the years, gotten into the (probably bad) habit of taking two Aspirin (or Advil) before going to bed during a cycle in a likely vain attempt to prevent an attack even occuring. Sometimes it works (I think), but most times it doesn't. Is there, to your knowledge, a problem taking pain relievers together with Isoptin and, if necessary, O2 on top?

Thanks!

Roger

Just a quick follow-up on a tip that Wildhaus gave me a while back for all those of us in Switzerland (thanks again Michael!): the "Lungenliga" does deliver O2 to your doorstep! Armed with your GP's note (mine even called the Lungenliga for me) they'll get the good stuff to you the next day, if ordered by 4pm (except weekends, of course). The delivery is done by Carbaga, a local distributor of O2 and other gas-related products (such as camping gas).

According to the Lungenliga, Swiss health insurance will cover up to five 10L tanks per month. I shouldn't need quite that much, but am really happy to have found a reliable (and paid for) service!

The lady I spoke to today said the requests for O2 from CH sufferers have increased dramatically in the last year; I'm sure that this is also due to the good folks on this and other related sites, so keep at it, friends!!

Happy and and long PF periods to all of you,

Roger

Yeah, the insurance will cover oxygen as long as they believe it's to treat respiratory disease. Oxygen for CH is unknown to the insurance companies, and, of course, it is not in this infamous "list of appliances and equipments" (MiGeL).
Therefore, you should, whenever possible, limit the usage to not more than 3 month. Afterwards the ins. wants a blood test, that is senseless for CH. Even an insurance that has "christian" and "social" in its name makes troubles if they learn you use oxygen for CH.


Did you get a proper non-rebreather mask?



                 [smiley=smokin.gif]

Aha ... well, I'll report on my experiences with the heath insurance. The lady from the Lungenliga told me the recent CH cases had been no trouble with the health insurance, which is what I had heard from Wildhaus, also. Time will tell...

As for the mask, I'l see when the bottle arrives on Monday. Again, will report here.

Roger