Just getting back after a couple years absence.  Have moved several times and now settled in California.  Seem to be going through a mild "season".  Not sure if it is change from Hawaii to California climate.  Feels a lot like a head cold with a constant runny nose and eye pain on the right side.  Rarely goes over a 2 for now, but dreading the "big one" to hit.  A lot of stress with move and new job.  No insurance yet, so no meds, other than left over vicodine, which sometimes helps.

Last time I was here, I was able to help a fellow sufferer with some information I had learned, so I thought I would repost.  One of my triggers is tea.  Iced tea, hot tea, green tea, black tea.  Though this was strange because coffee and soda don't bother me, so it's obviously not the caffeine.  Learned that back in the day, dentists used to prescribe tea bags to stop the bleeding after an extraction.  Tea contains tinactic acid, which closes off blood vessels -ahh, the light dawns.  I respond well to torodol shots, a strong anitinflamitory.  So, I need those darn blood vessels open wide and lots of hydration and oxygen.  No more tea for me.  Hope this helps others again.

Ah Tea how I miss it!

I found out about Tea the HARD way!  Tea is a trigger for me as well just one more thing to avoid to help keep the beast at bay, even though he visits almost everyday all year long  >:(

Good idea on the re-post and Welcome back!

As Joe reminded me of it earlier here are a few tips for you until you can get ins. and more O2 or Meds.

4-Way nasal spray (helps with the annoying congestion), Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting, melatonin or allergy pill at night before bed to help avoid night time hits, and finally, the herb Kudzu has helped a few as a prevent.   Deep breathing through the milder hits can help too.

Hope things settle down for you soon and hope the Ins. comes even sooner!!

PF Wishes to you!
Ging...

Welcome back, "Alice." And dittos, double dittos, to everything Ginger said! Blessings! lance

Welcome back to the board! If you're in the San Diego area let me know!

Joe

Welcome back!  I love your screen name  :) I say that to my son all the time. 

I never knew that about tea, so thanks.

I hope the big one doesn't hit, but if it does you'll get plenty of support and advice here.  Stick around  ;)

Wishin you all the best,
Kate

thanks for all the support.  heavy stress right now. husband suffers a LOT of pain due to herniated disc pressing against nerves. really messing with my sleep. think the combination of stress n lack of sleep are triggering me. no med ins yet, but have a connection for vicodine and have a few imitrex left.

  joe, live in redwood city. but if ur in the area, would love to meet you. it is so hard to find friends who understand. even my friends who suffer from migraines just say rest in a dark, quiet room and take over the counter migraine meds. after all, it helps them.

my husband is a God send. he has been really good about supporting me and running interferance. if we have a bad nite, he makes it a point to let me rest in the morning even though he has been up all nite with his pain. i try not to put it on him.

havent tried the 4way nasal spray. if it is an antihistamine, im not a good candidate. did use a saline solution for a while and brought some temporary relief. tried pot once, but that was a huge mistake. my husband calls me a canary because i react strongly to a lot of meds.

anyone have any experience or information on the surgery? kinda concerned about nerve damage, but if it works, may consider it. anything beats those 8 - 10's.  work as a resident manager for a complex that hasnt had a manager for over 9 mos. so, playing catch up and not unusual to run 16 & 24 hr days. life must go on, so if surgery is a good option, would like to know.

thanks again for the prayers, good wishes, and just being there.

Welcome back....Sorry to hear that the Beast is bothering you..

Peace & Blessings
Ruthie

curiouserncuriouser wrote on Aug 19^th, 2010 at 7:13am:

havent tried the 4way nasal spray. if it is an antihistamine, im not a good candidate. did use a saline solution for a while and brought some temporary relief. tried pot once, but that was a huge mistake. my husband calls me a canary because i react strongly to a lot of meds.

I believe the 4 way nasal spray may have an anti histamine in it...can't remember which one it is, or if it is the 4 way nasal spray I'm thinking of or a different one. 

Ingredients for 4 way below and below that an alternative without many side affects antihistamines can cause.

4-Way Fast Acting Nasal Spray Active Ingredients:  naphazoline hydrochloride, phenylephrine hydrochloride, pyrilamine maleate.

4-Way Fast Acting Nasal Spray Chemical Information:
Naphazoline Hydrochloride  - The hydrochloride salt form of naphazoline, an imidazole derivative and a direct-acting sympathomimetic amine with vasoconstrictive properties. Upon ocular administration, naphazoline hydrochloride exerts its effect by acting on alpha-adrenergic receptors in the arterioles of the conjunctiva to produce vasoconstriction, resulting in decreased conjunctival congestion and diminished itching, irritation and redness.

phenylephrine hydrochloride

pyrilamine maleate

-----------------------------------

I have the issues with different medications as well so on my Dad's suggestion I tried the Dristan 12 hour nasal spray which only contains the following ingredient:

Oxymetazoline hydrochloride is a direct-acting sympathomimetic amine. It acts on alpha-adrenergic receptors in the arterioles of the conjunctiva to produce vasoconstriction, resulting in decreased conjunctival congestion.

Oxymetazoline is an adrenomimetic that nonselectively agonizes α1 and α2 adrenergic receptors. Since vascular beds widely express α1 receptors, the action of oxymetazoline results in vasoconstriction. In addition, the local application of the drug also results in vasoconstriction due to its action on endothelial postsynaptic α2 receptors; systemic application of α2 agonists, in contrast, causes vasodilation because of centrally-mediated inhibition of sympathetic tone via presynaptic α2 receptors.  Vasoconstriction of vessels results in relief of nasal congestion in two ways: firstly, it increases the diameter of the airway lumen; secondly, it reduces fluid exudation from postcapillary venules.

As always double check with your Doc on possible drug interactions with other medications you may be taking.

Welcome CnC!
Sorry you had to be here!   ;)
For some info on the surgery, go to the medications tab and see the thread started by Neal for a play by play on his experience.

The only other thing I have to add is about the vasoconstriction nasal sprays - generally just be quite cautious about using them for more than 3 days in a row.  There is actually a condition called rhinitis medicamentosa - this is where the nasal mucosa gets dependent on the spray to constrict.  Without the spray, the mucosa will rebound back to being more swollen and irritated than before - some people get into a cycle where they just can't stop the spray without getting completely blocked up and end up taking the spray for months or years...
And, you know, that just can't be good for CH!

Lettucehead is correct and the nasal sprays should only be used if you have nothing else on hand, not daily and only if your doc says it won't interfere with other medications.

Thank you all for the information.  I am going to follow up on the surgery.  When I was diagnosed 15 years ago, no one knew anything.  I went the gamut from a thyroid condition, to brain tumor, to allergies, to ENT (who diagnosed me with "nonspecific rhyonitis" - basically a term that means "I don't know what the hell it is", to a neorologist who said it's not maigrain, but I don't know what it is, to you are faking it for drugs.  I was being given Tylenol 4 and taking 4 to 6 at a time.  Ended up in bed for three days unable to move, cry, eat, drink, and barely able to breath.  Finally my GP came back from maternity leave, took one look at me and told me it was Clusters (She had another male patient that had them) and throw away the t4's because they were rebounding me.  She then started me on a strong antinflamitory, which worked fairly well for a while until it started bothering my stomach too much.  From then on, it was different types of meds and finally taking naproxen on such a frequent basis that I now have ulcers and cannot take any antiinflamitories orally. 

So, with the "nonspecific rhyonitis" diagnosis, and the warning from lettucehead, I think I should stay away from the nasal sprays. 

For some info on the surgery, go to the medications tab and see the thread started by Neal for a play by play on his experience.

I will check this out. 

Unfortunately, since my last posting, I am in full blown "season".  Started in earnest yesterday early morning with the nausea, then the migrain, then built to a 4 cluster.  Hung on all day.  I work as a Resident Manager for a complex that has not had a manager in 8 months and we have a lot of catch up.  Cannot afford to take time off and have a difficult time "coming out of myself" to deal with tenants.  Woke up again around 12am with a 2 that was quickly gaining ground, then got up again around 7 with the demon trying to decide which side of the brain it wanted to attack.  Began on left and then slowly, but visciously clawed and climbed its way across the hemesphere to rest on the right side. 

I tend to be a righty, but on a few occasions have had them on the left and on fewer occassions had them switch sides.  I am guessing others have had the same experience.  Usually when it moves I can feel tendrils, like skinny octopus tendrils crawling across the top of my head.  This morning it was more like a grabing and clutching as it dragged itself across, seemingly taking chunks of my brain with it.  Took a vocodine and it is down to a barable 2 again. 

Just keep me ion your prayers.  Have 2 leases to type this weekend and a couple of showings. 

Guess I shouldt complain so much, I have been blessed with them staying in the low range and it has been about a year since the last "season".  Just so hard to feel blessed when you're in the midst of it.  I know there are others that suffer much more than me, but the selfishness jumps out and then it's "but this is me it's happening to". I'm hormonal right now, which I think is contributing.  So, forgive me if I offend anyone.