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Everything posted by didgens

  1. Thanks all ,,, Since were going to alaska i know the consumption of fish will be HUGE !! good to see you again batch ,, ive been away for quite a while, i will pack the vitamins. He doenst want to go the O's route so we'll have to make due ,, i feel he is very close to the end of cycle he had a minor one the other morning. will pack away some 5 hour energy ,, also i bought some GU ,, not sure if your all familiar,, its like frosting with Caffine ,, I used it quite a bit on Mountaineering and backpacking trips ..
  2. Hi All ,, been some time now ,, mostly looking at posts on facebook,, I see some of you here over there. We are getting ready to go to Alaska next week and my son is having his cluster phase,, im hoping we will be mostly done by the time we leave as we are not taking any O's or abortives ,, i know that sounds crazy to some here but he knows how to deal with them without anything at times .. its been recommended that i grab some 5 hour energies for him to take along,, any other suggestions ? thanks
  3. figured it was genetic since great grandpa had migrines and my sons Father had SUNCT syndrome..
  4. proves my point ,, and what my gut told me long ago .. i never let my son used the imitrex injections ,, hes 1 headache every 2 - 3 days during cluster phase
  5. In the end of it all you are in charge of you ,, follow your gut ,, if you dont like what happens then take their advice. My son is also episodic ,, and although the doc prescribed imitrex injections he has never used one. He knows they are there ,, and im afraid if we go down that rabbit hole it will make things ultimately worse or trigger chronic CH.. no data to support this ,, just a gut "MOMS" feeling, He uses O's (oxygen) to abort ,, and when not available a hot shower or walking around. I have seen him get some pretty bad ones early on ,,but since treating with O's and recognizing one comming on and downing a Red Bull, Coffee or similar he manages them pretty well. So do you you think is best/safest for you.
  6. http://www.cnn.com/2016/12/01/health/magic-mushrooms-cancer-patients/index.html
  7. Its the only thing that I can routinely point my finger at. as soon as the temperatures swing hes hit. and its usually from a colder more drizzly temperature to a hotter one. last week we were in the 60's then a couple days of almost 100 ,, he was hit a few days before the heat. Same thing the last couple days ,, and we are headed for 109 on Monday. Don't know if this helps anyone but you might keep an eye.
  8. pretty sure its a gene pool thing .. my sons great grandfather had migraines ,, my husband had SUNCT syndrome and now he has CH. and he looks mostly like his GG.
  9. thank you spiny ! Also a beer (for the first time) affected him last night as well. He has never had alcohol as a trigger before now.
  10. Thank you ! yes of all the antihistamines Benadryl is the only one that seems to help him. I picked some up for him after reading somewhere that others benefited from it as well. I think the swelling that causes the nerve pressure can be a result of allergies or virus' so maybe the Benadryl helps in either case.
  11. Thanks all (yes chf ,, everything is over, lost my mom in September, my husband in December) ,, I have also noticed that my son gets them at the beginning of a virus as well,, if a cold of some kind has invaded him the first thing he gets sometimes is the CH ,, swelling of something ,, I dunno anymore, will get back to doing more research after a while. miss you guys ..
  12. Hi all ,, been gone for some time now. (life was hell). Anyway I can definitively say without a doubt that a FOR SURE trigger is barometric pressure change.. I have been observing this for some time now,, and this is a solid trigger for my son. not sure what to do with that info. but now I have time to research it a bit more.
  13. this kind of knot is not uncommon. my son will often have me work it out for him. I don't think its the cause ,, more the effect.
  14. THMH I believe that there are multiple triggers of vaso dialation ,, but imitrex which is a vaso consctictor as are O's seems to stop them .. I am probably the only one who thinks there is something structurally different in the CH sufferer. but that's just me.
  15. sorry ,, chick here just going down the rabbit hole .. so to speak if its known that VASO dialation caused the freakin pain .. then why cant they find the VASO .. that gets DIALATED and puts pressure on the EYEBALL Nerve and FRICKEN FIX IT .. ok .. back to dude talk
  16. what spiny said ,, if its the real deal .. it will come to the U.S.
  17. Leila ,, you sound very much like my son which his HA doc said is "atypical" ,, they are never the same months .. or times between ,, they do seem to "cluster" around the fall and spring equinox, but then he can get say 5 in june/july ,, or some in feb or January that have no apparent reason. I try to notice what he has eaten, if he has had a cold or sinus issue surrounding it, are there any odd smells in the air. is anyone else in the family experiencing any sort of health issue. this is all I have been able to come up with his attacks happen 1. around the fall/spring equinox 2. there seems to be sneezing/hay fever at other times 3. there seems to be an odd smell in the air (ie. something in bloom, or city gardners pesticides) 4. sometimes an upset stomach 5. benedryl helps at times 6. o's to abort don't know if that helps ,, but I to worry when I see them start to become more frequent, but then they once again hide their ugly head for a few months only to return.
  18. Dr. Kudrow in Santa Monica is good as well ,, he also is doing some kind of study
  19. Hi CHf and MG,, I think about you all here often ,, but I don't have anything new to add ,, son is stable, husband is stableish, so just plugging along going to work hoping to retire, !!
  20. thanks PE ,, I do know that they run in families .. hoping more chime in !
  21. oddly the treatment for these are some used for CH's ,, hmm deep brain stimulation beta blockers anti seizure medication tranquilizers botox injections
  22. A friend of mine mentioned that her brother started having tremors the other day. I mentioned that its not uncommon as we age , ,but then I thought ,, you know both my husband and my son have tremors. You know those little shaky hands when you try to do something like thread a needle or something similar ,, does anyone else notice that they have these ?? I know they are normal ,, but just curious.
  23. Hi All ,, I have been off the boards for a while ,, imagine my surprise. Looks great .. cudos to whoever put it toghether ! I really don't have anything new to add,, my sons CH's are same ole same ole,, a couple of weeks of them a few months apart. On a side note if anyone is here in southern California Dr. Kudrow seems to be looking into a special study, his office called me but since my son is episodic and non typical he really didn't fit the bill. You might try giving him a call if your interested. He is in Santa Monica. On another side observance ,, my son did get hit this last week,, but things of note are 1. definite change in weather ,,swing from 80's to over 107 degrees ,, so validates the pressure change aspect. 2. LOTS of particulates in the air ,, we had some bad fires here ,, also something I have suspected. 3. Benedryl does seem to help him some,, also rest of family sneezing etc. well ,, that's all I can really add,,, hugs to all ,,
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