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spiny

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Everything posted by spiny

  1. Â [smiley=tekst-toppie.gif] Hallelujah and pass the cornbread. ;D I am really glad it worked for you wiggyworks!
  2. Ya could always try an O'Douls (sp?)Â That No Alcohol beer really sucks. > Having been at the point when one sip would send me into orbit, I tried the O'Doul's and promptly decided I would rather drink warm pond water! ;D Hang in there!!!
  3. Javier who was on the board last year is in Madrid. He was seeking help for a child relative I think. Might be worth a shot. Evidently Spain is odd in treatment of CH. But, he may have a name or suggestion for you.
  4. Yes and Yes. > That is why so many of us hate the misnomer Cluster Headache A 'headache' it is not!!! And no, you will not be able to change anyone's mind either! Personally, I have resorted to 'Rare Neurological Condition' and leave it at that. Migraine sufferers often have been told or led to believe that they have the absolute worst headache on the planet. So, you are a baby who needs an aspirin and to shut-up about your pain. 'Suicide Headache' is a term some can grasp. Frustrating as hell isn't it?
  5. The 'beer test' is best left alone until you have some weeks of PF under your belt. I too love beer when working outside and know how dry a suds-free summer feels!!! Even waiting 3 weeks or so I have had that beer raise the dragon for me. > For busting, I suspect the nasal spray needs to be left off the med list for 5 days. Many can continue with the Verap. What is the spray called? A lot of meds can adversely affect busting. Actually, they keep it from working at all. So, you could be wasting your medicine!!! all the best!
  6. What mask are you using? The Optimask, sold at Clusterheadaches.com for about 30.00 makes a world of difference. The ones from the medical suppliers are no where near what you want. Also, energy drink or coffee on your way to the O2 is a BIG help!!
  7. Tyke, You are doing great. I understand Melatonin is difficult to get in the UK, but it helps many (me) with nighttime hits. If you can get your mitts on some, start with 10mg at bedtime. I take up to 30mg in high cycle. Hugs!!!! spiny
  8. That is because your are SMART!!!!!! Unfortunately, some of us got the news too late. >
  9. ipain, That yuck feeling after seems like a hangover to many. Drinking plenty of fluids (OJ perhaps) seems to mitigate some of it. Bananas can also help some. From my reading and talking to people, just staying hydrated will help with the day after yuck. I mean hydrated during and after dosing. spiny
  10. Good morning Tyke! CH sucks, but glad you found this site. Lots of great people and information here. Verap takes a while to build up in my experience so don't be surprised that. O2 will become your best friend! You can use a welding set-up if need be rather than medical O2. It is much cheaper. Also, slamming an energy drink with Taurine at the start of an attack can abort the hit for many. Coffee works too if you can't hack those drinks. Feel welcome and ask questions! Here, you are among people who understand and want to help. No need to worry about patience or such. Others will be along soon to fill you in on lots of stuff. I just wanted you to know that someone was up and reading your post!!!! all the best spiny
  11. Very complicated. In cycle, a low presure system will set me off big time. Out of cycle, not so much. Normally, my cycle will start at the fall equinox and for the past three years it has lasted 6-7 months. Every low pressure that passes thru at that time will trigger high cycle even if it is the beginning of the cycle when the hits should be mild and only 1-2 per night. I wind up with 4 hits all night long with the low pressure front!!! Perhaps not the cause, but definitely a BIG trigger. I live on a mountain. When I go down the mountain (during cycle) I am fine. Coming back up the mountain, I get hit hard. Lower pressure = big CH. For me, it makes a big difference. Not a cause, but a big trigger. BTW, I would recommend that preventative be adjusted according to weather. spiny
  12. Well, since I am rather tired of sitting up in bed at 2am or so and yelling something like Tarragon! (forgotten in cooking) or Beth! (whose name I could not recall at 2pm) I too will hunt some down. Jeebs, this won't reduce my psychic abilities will it? : Sometimes I need that help! ;D
  13. Donnie, Please check on which, if any, of your meds require a taper. IE: Reducing the daily amount gradually. Some things can't just be stopped one day. You can check this online easily. Good Luck! spiny
  14. In today's health system, they will ask if you are thinking of suicide when you go to the Dr or ER!!!! Then, they enter it into your electronic record where it stays forever. > When it gets bad, I want to break something!!!!!! I tell them the truth: If I wanted to commit suicide, why would I waste my money going to them?????
  15. domino, I too take the D3 for health reasons, not CH. It does not help the head, but it does help my body. It brought my d up to norm. Another side benefit is that my total cholesterol is under 200 and the good stuff accounts for 2/3 of the total. I gave it a 2 month trial last year for Ch and it did not help there, but it seemed logical to stay on it for the other benefits.
  16. Victor, I think a lot of members use the D3 daily and other vits. as needed. Personally, I use the D3 regimen year round, as my D maxes at 30 in August after a summer of gardening! Clusterheads tend to have low D3 all the time or in cycle. They are not mutually exclusive treatments by any means. spiny
  17. b.g. I can't recline all the way either. Just enough to keep my head from banging on my chest so I can turn sideways to curl up a bit. Push it back all the way and get hit. Anyway, in cycle prone=hit. His recliner is safe from female cleaning or re-decorating frenzy. A friend on here plops a couple of pillows on the table and puts her head down on them to sleep. What works for one may help another. Hope your night goes really well for you!! [smiley=vrolijk_1.gif]
  18. The 'not sleeping' thingy. Have you tried a recliner? The only sleep I get is in hubby's recliner. Recline part way to relax. If I lie down, I get hit. O2, coffee, and a Barca-lounger = an hour of sleep per night. Sure beats 15 minutes I get otherwise. Just a suggestion. BTW: This stupid weather with baro drops really sucks for many CHer's. Hopefully, once the up and down stuff quits for a few days you will be feeling a bit better. Of course farming is most helpful. 8-)
  19. 64. Eye specialist at Duke only found two other cases on record. I doubt that you need to worry.
  20. Hehehe!!!! I have Horners with the pupil permanently constricted on the CH side. One novel thing is that with the Horners, the iris has changed color. Otherwise, just getting old arthritis and not a bad case of that.
  21. Oh my goodness. 101??????? Your are right FG, that is truly sad. :'(
  22. The only death I have seen recorded was that of a elephant! I can't imagine why someone would give M to an elephant.
  23. Pharma: In addition to what you stated, they will find and off label a new use for the drug. When that shows promise, they will get it on label and now the patent does not run out on schedule because it can now be used for xxxxxxx! > Rented tanks have to be filled by the operation they are rented from. Purchased tanks can be filled by others. I just gave up on the hassle of an O2 script. I use it for welding too, so I will always have it on site. Besides, my guy will deliver on Sunday if I run out while in cycle!
  24. nofear, You have me beat by a few years, but mine got really bad after 60. I use welding O2. Dr. won't even prescribe it for me he is so scared of it, AT MY AGE!!!!!! > The world is full of idiots and I have met my share. spiny
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