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Yucca
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Hello all!
Jan 26th, 2021 at 3:34am
 
Hello all!
New here, but somewhat seasoned with CH. Iím 47 yrs old male having had CH for 10+ years, chronic almost  from the beginning. Iím lucky to get right diagnosis pretty much right away when I got to ER for the first time, maybe because my nearest hospital is big university hospital specialized to neuropathic conditions. I worked as IT-project manager for years, but now Iím on disability pension due another fucker than CH. Below I have listed the medicines and treatments Iíve used and currently using and shortly described my personal experience of them. Gone through pretty much all the usual stuff:

- Steroids: Prednisone, Prednisolone.
Pros: Broke the cycle at the first time for few weeks.
Cons: No sleep, swelling, bruising, constant taste of iron in mouth

- Oxygen.
Pros: Best option and should be always be the first what doctor describes.
Cons: Quite expensive if no insurance (public or individual).

- Verpamil.
Pros: Broke the cycle for few weeks.
Cons: Tired all the time, rash, cardio problems.

- Imigran.
Pros: ?
Cons: I was/am highly allergic to sumatriptan.

- Aimovig.
Pros: Some relief.
Cons: Loss of hair, vertigo / dizziness.

- SNRI- and SSRI-meds (Citalopram, Topiramate etc).
Pros: None.
Cons: Zombie 24/7 and muscular spasms.

- Opiates (all up to fentanyl).
Pros: Fun for a while until not
Cons: No relief to CH

- Ibuprofein and paracetamol
Pros: None
Cons: No relief to CH

- Capsaisin nasal spray.
Pros: Aborts or postpones the attack pretty effectively.
Cons: Nostral mucosa pretty much non-existent

- First generation antihistamines.
Pros: None.
Cons: Dizzyness and tired all the time.

- Acupuncture.
Pros: Felt good for a moment.
Cons: Mother of all attacks afterwards.

- Low carb diet.
Pros: Good overall condition.
Cons: No relief to CH.

- Meditation.
Pros: Mental calmness.
Cons: Not my thing.

- LSA.
Pros: Helped pretty good.
Cons: Gives pretty bad nausea.

- Temotsolomide.
Nothing to do with CH, but listed it anyway.

Currently using
- Oxygen (abortive).
Pros: Cuts the edge of the attack within 10mins.
Cons: Quite expensive if no insurance and sometimes hard to get the first prescription.

- Energy drinks (abortive).
Pros: May stop the attack even before it gets it's high.
Cons: Taste like what I would imagine camel toe silsa tastes.

- Licorice root extract (abortive).
Pros: May stop the attack even before it gets it's high.
Cons: May not be suitable if having any heart condition.

- D-vitamin regimen (as preventative).
Pros: Game changer!
Cons: Have to check my blood levels every 3-6 months.

- M- and L-vitamins (as preventative & abortive)
Pros: Game changer!
Cons: Illegal and therefore might be difficult to obtain (Canada and few other trendsetter countries excluded).

- Prednisolone (for my allergy).
Havenít seen any effect to CH in good or in bad

- Propranolol (for my essential tremor).
Havenít seen any effect to CH in good or in bad

Thatís about it Smiley Sorry the long post and thanks for adding me to the Forum!
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AussieBrian
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CH - It's all in your
head!


Posts: 3818
Cairns, Qld, Australia
Gender: male
Re: Hello all!
Reply #1 - Jan 26th, 2021 at 6:58am
 
No need to apologise for the long post, Yucca.† It was delightful.

A couple of things jumped out and one is your use of oxygen.† On the left side of your screen is a list of buttons and one of them is† Oxygen Info.† This gives all the great information on how to set up and use the stuff for the absolute bestest results.† Many people swear by it.

You also mention vitamin D and huge steps have been taken here to refine this little trick to the point that some 80% of ClusterHeads are reporting themselves either pain free or at least able to return to their former lives.

All the details of the full regimen are available right here at no extra cost.

Best of all is that you're happy to take full control of this monster and drive it into the ground where it truly deserves to be.

Keep fighting the good fight,

Brian down under.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
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Melissa
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Don't give up!


Posts: 7238
Central WI, USA
Gender: female
Re: Hello all!
Reply #2 - Jan 26th, 2021 at 12:26pm
 
Hello Yucca,

Just wanted to give a tip about the nausea with the LSA. Drink a glass of orange juice immediately after ingesting to combat it.

Welcome to your cluster family! Sorry you have to be here, but glad you found us.

-Mel
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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.† ~Bernie S. Siegel
https://www.facebook.com/mellymoo92  
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jon019
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Posts: 1649
USA
Gender: male
Re: Hello all!
Reply #3 - Jan 26th, 2021 at 3:12pm
 
hi yucca...welcome!

...couple of thoughts...

...the success of energy drinks is testament to the effectiveness/ ingenuity of the food and marketing industries cuz ...DAYUM....how could something that tastes so bad be so successful? have tried every one and eventually got to NOS tropical punch that one could convince oneself MIGHT taste ok. still and all too much sugar, liquid, inconvenience, yadda yadda. now use the 5-hr energy types from the discount grocery stores for <$1/ea. only 2 oz, entirely portable, easily and quickly downed, less nauseating, higher levels caffeine/taurine than many of the full can varieties...and nunna the damn OUNCES of sugar. always watch out for the aspartame as is a trigger that sucralose is not....

...re O2 am surprised cost is the limiting factor for you...sad that some places that is so. OXYGEN saved my sanity, perhaps my life, frankly i would pay most anything. in my case various insurance companies would or would not cover so i paid out of pocket about $10-14 per e-tank and a little more for M-60's. worth calling around to O2 shops to see if they'll work with you. bought all the necessaries online like the opti-mask here and regulators for ea tank style for <$200 total. for not much more a welding rig (tank/mask/regulator/refills) is an option used by a buncha clusterheads....

best

jonathan

PS HIYA MEL!!!
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The LARGE print giveth....and the small print taketh away.    Tom Waits
 
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Yucca
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Finland
Gender: male
Re: Hello all!
Reply #4 - Jan 29th, 2021 at 12:41am
 
Well, actually the price of O2 (or any other prescription medicine in that matter) is no limiting factor for anyone here in Finland. We have a pretty good compensation system to meds, since all medical cost combined exceeding of total 580 euros during a year are basically free. I just put that in there since I've read that O2 is pretty expensive in some countries.
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