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iPain

Newbie in cycle

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First cycle November-January.  I had no idea what was happening.  Had a history of migraines, but this was a whole new beast.  Several had me thinking I'd prefer death.  One had me actually want to commit suicide. 

Finally diagnosed as CH.  Put on prednisone taper and Verapamil.  Three weeks of completely relief.

The beast is back.  8 days in a row.  Having kip 5-6 right now, and don't even know how I'm typing.

I'm miserable and hate what this is doing to my life.

Just looking for information at this point.  I want to know as much as possible about this affliction.  Is there someone out there willing to talk with me for a few minutes?  If so, please PM me, and either I'll give you my number or vice versa. 

Thank you, and I wish all of you pain free days and nights.

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Sorry you are in pain, but you are in the right place. Other more worthy folks usually do this but in case you come online before they get to you, here's the short version: Read everything you can on this site's archived information because knowledge is your very best friend. Do that first, acquaint yourself with O2 therapy for aborting and find a doctor to prescribe it. Then everyone here will climb over each other to help you.

One word of admittedly unsolicited advice, but I can't help it: Steroids are poison, they don't work (as you've apparently discovered for yourself) and they will F you up for life. Verapamil, still regularly prescribed, also sucks; it requires heavy doses to be "effective", its usefulness degrades the longer you are on it and the side effects are abhorrent. Don't take any drug just because a doctor says so; they frequently have no idea what they are actually prescribing and why, they are going by the playbook. Do the research yourself; it is your body.

You are not alone, many here have considered death a viable option at one time or another, or wished for it. Admittedly it takes courage to live with this degree of pain; true not only of cluster but many other things. I think lots of us relish the chance to kick it to the curb in a cloud of dust (figuratively speaking, of course). Take heart, you are in good company.

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iPain,

Can't agree more with Les...  Verapamil helped me the first cycle I ever took it.  Thought it was a miracle drug.  The next cycle it did nothing helpfull, BUT did start some heart problems PVC's. (Premature Ventricle Contractions).  Thankfully the PVC's are gone now, but I'll never be in the same room with that CR$P again, much less ever put it in my body. 

Many of us here have been to the dark place you speak of.  I've personally been seconds from the receiving end of a 9... Things DO get better!!!  Sent you a PM call anytime 24 X 7.

1)  O2, O2, O2 first, last and only thing you'll need to get from your doctor. 

2)  Detox from the prescription stuff while using O2 to abort (EARLY! don't wait thinking the attack you're feeling will go away).  The earlier you start 100% O2 at an attack the quicker and better it works to abort. 

3)  Bust!  There are many types to use.

I've personally tried 4 different busting methods, Seeds containing LSA worked great for a year, but lost their punch and I switched to fungus.  Fungus has worked GREAT since.

PF Wishes!

Jeff

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ipain,

Many times Pred. will not work once you begin to taper off. For me, at 3/day, the CH returned.

Verap helps many, but it is bad if you have low PB.

O2 with a non-rebreather mask at 15 to 25LPM is rocking! In a good way.

Ask questions. Read. PM anytime.

spiny

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Does anyone else find the name iPain pretty clever?  Or just me?

Totally! Has made me think about changing my nick to 'iHurt'. but everyone knows me as Renee, so probably a bit late. But clever.

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Pretty comfortable with the new neuro.  Prescribed oxygen and overall seemed pretty knowledgable about CH.  Working on getting my O2 ASAP.

There is one aspect I'd like some opinions on, however.  I know how much of this group feels about pharmacuticals, but I'm still interested.  Right now, the only thing I'm on is 240 mg of Verapamil once a day extended release.  He wants to double the dosage to 480 (1 240 mg ER tablet twice a day) and he wants to put me on Depakote.  I don't know anything about Depakote really.  He wants to do bloodwork to check my liver function with blood work before I start taking Depakote, so I have some time to figure it out.

Also doing an MRA (previously had MRI which was normal) just to rule out aneurism....though he said I'm "textbook" for CH.

Anyway, anybody have any thoughts on Depakote?  Thanks!

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Also, kind of interesting.  He gave me a sample of Sumavel DosePro, which is a needle-free injection of sumatriptan.  I always thought needle-free and injection were contradictory, but appanently not.  Just nice to know what is out there.

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I worked with emotionally disturbed kids for 4 years, most were on Depakote, and most developed major seizure disorders as a result.  I'm sure it had something to do with the cocktail of meds they were taking, but all who developed seizures were on depakote.  That is worth noting. 

Do your research, as pharmaceuticals can really mess with brain chemistry (not always positive) after one dose, with permanent results.

Good luck!

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To everyone new.....

If I may. I suggest you read the files we have on this site. There is a lot of information you need to know. Warnings, contraindications on other meds, how, when and where to dose.

This is a treatment that may help you for years to come and it should be worth the time it takes to learn the facts. I understand any one's exuberance in wanting to find a quick fix and answers. Clusters make us all anxious to find relief.

Clusters are complicated. Treatments can be complicated. It's a lot more than, "how much do I take?"

There are years worth of research, personal experiences and much more that has been important enough to record and share.

I didn't follow written instructions when I tried this almost ten years ago and I paid for it. The treatment has been refined over the years to try and eliminate as many risks and pitfalls as possible and to increase your odds of success.

This is NOT a "drop acid and cure your clusters" treatment. Respect the seriousness of the disease and what it takes to beat it. Respect the treatment and what has taken hundreds of people like those helping in this thread, to refine this treatment into a safe and effective tool in battling cluster headaches.

Bob

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Since you asked; Depakote is poisonous garbage, marginally useful (if at all) as an anticonvulsive and the chemical equivalent of stabbing your liver every day with a rusty icepick. It is an example of an annoying trend among neurologists, doubtless instigated by their drug reps, to push antiseizure meds on cluster patients despite virtually no evidence that they are in any way useful beyond their own (I'm certain) trustworthy 'science'. Look it up; reading the list of side effects should loosen your bowels faster than a visit to Taco Bell.

Verapamil is as long term useful in cluster as goose shit on a pump handle, and bad for you to boot.

The best advice you are likely to get is immediately above. Educate yourself; don't take anyone's opinion as fact.

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I can't comment how Depakote might or might not help you with your condition... But Depakote is something I was put on at 15, and it nearly killed me. I was having a LOT of seizures at the time, so my pedi-neurologist loaded me up on the stuff after a lumbar puncture.

A few days later he calls and asks Mom "How's our girl?"

"Oh, she's GREAT! She slept the whole way home. She's finally getting some sleep!"

"Uh oh, how much is she sleeping?"

"A lot of the time. Why?"

"She may be going into liver failure. Get her to the hospital. I'm going to call her pediatrician and have him order the blood test and admit her just in case."

So we go, they do the blood test, and my blood ammonia level was 140.

They took me off the Depakote. I had I think 50 seizures that day. They put me on Dilantin in the IV, and that dropped my blood pressure down to 70/25 I then went into a full blown status seizure/coma for 3 days. Funny thing was? When I woke up and my family was super happy to see me I was kinda like what the hell? I just took a nap for a little while...

Also, if you notice your urine is smelling a lot like ammonia, that's another sign the Depakote is screwing you up. I noticed it a day or two before I had to be hospitalized.

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Almost seems funny (if it wasn't so serious). Psilocybin and LSD, etc. are illegal because of the hallucinagenic trip you might get from them if you take more than a very small dose, as in our case. This trip might last 2-4 hours or so. And yet, there are a whole list of legal drugs (that don't seem to work nearly as well) who's list of side affects are a page long, last for weeks, and could potentially kill, or hospitalise ya.

Only governments could apply such backwards logic to a situation.

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Welcome iPain, changing my name to 1iBob, my wife says you got a headache, no... why is your hand over you eye. We all need a nero and I guess we have to go through their treatments of applied science, take this, take more, taper off this and weÂ’ll start taking this, mri, mra and ct, spells something. We all go through it and maybe we need to. Just remember you are the best judge to what is going on with you and your ch. Good luck, GodÂ’s speedÂ… peace

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Almost seems funny (if it wasn't so serious). Psilocybin and LSD, etc. are illegal because of the hallucinagenic trip you might get from them if you take more than a very small dose, as in our case. This trip might last 2-4 hours or so. And yet, there are a whole list of legal drugs (that don't seem to work nearly as well) who's list of side affects are a page long, last for weeks, and could potentially kill, or hospitalise ya.

Only governments could apply such backwards logic to a situation. 

There logic is different than most peoples. It starts with financial considerations at the top of the list.

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Just got a call that my oxygen will be delivered tonight!  I never thought I could be so excited for OXYGEN.  That seems to be the one consensus for CH sufferes though - get O2.

I've actually managed to esacpe any major CH all day so far, but have had fairly significant, annoying, and draining shadows all day long.  Has anyone had success in aborting day-long shadows with O2 or that really more for CH attacks?  Thanks!

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