Pixie-elf

I feel the need to post this in this thread. And that kind of activity doesn't trigger me. Thankfully.

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.

Make sure the seeds say that they are NOT chemically treated. If they are, taking them could make you sick. Good luck on busting!

Yes, you can. It's only illegal if you try to get narcotics or I'm guessing something illegal here... My allegist/immunologist would write me the prescription for my Ketotifen. It's not FDA approved in the US, for a stupid reason, but it's a FANTASTIC antihistamine. Anyways, we'd fax the prescription in to them, and mail the hard copy...They'd have one of their doctors look at it, re-write it, and send it. We did this for a LONG time, until they got a compounding pharmacy here in Texas who could make it. Ricardo, check it out. Seriously. From what wiki said, the reason Dopergin/Lisuride, is not used in the US not because of side effects, but because there were other drugs that worked better for Parkinsons. eta: http://www.pharmacychecker.com/compare-drug-prices-online-pharmacies/Dopergin-0.2+mg/34854/136643/

Yes, you can. It's only illegal if you try to get narcotics or I'm guessing something illegal here... My allegist/immunologist would write me the prescription for my Ketotifen. It's not FDA approved in the US, for a stupid reason, but it's a FANTASTIC antihistamine. Anyways, we'd fax the prescription in to them, and mail the hard copy...They'd have one of their doctors look at it, re-write it, and send it. We did this for a LONG time, until they got a compounding pharmacy here in Texas who could make it. Ricardo, check it out. Seriously. From what wiki said, the reason Dopergin/Lisuride, is not used in the US not because of side effects, but because there were other drugs that worked better for Parkinsons.

Isn't that what MAPS is trying to do in the first place? Get the drugs re-scheduled?

Damiano: Nah, I don't think they can just put it in the air. I mean regular nitro is an explosive agent. Your Grandma probably had a nitro patch on, and was given the pills. At least that's what they do on the heart floor here. The breathing treatment stuff kinda evaporates in the air, too, so no harm can come to you from that. Although while I was in the hospital they treated me with one with some stuff called Zopenex... and that shit triggered a hit too. I am so sorry for your loss. *hugs* Spiny: Yeah, I have one. The only problem is cluster's aren't listed on the actual ID because my other life-threatening problems are there. It says to call them IMMEDIATELY if they pick me up, because I have multiple drug allergies. Ricardo, TheBB, everyone else: I now know to refuse the shit without major painkillers around. That shit was HORRID.

I thought I'd read that it did, and tried telling them it'd give me horrid headache. Their response was it gives everyone a headache. : BTW, my heart is fine. I actually slept through the chemical stress test they did on me.

So, I just had a fun last 4 days. I had a severe allergic reaction on the way home from a new ENT who will be scoping my vocal cords. I also felt like something was sitting on my chest, even after some epi. So we go to the ER, my triponin was high, so they decide to give me some nitro to protect my heart. Just in case. Level 10 hit resulted. I screamed bloody fecking murder in the ER for a good long while until they brought me some morphine. The shit didn't even help my chest pain! > I've had some pretty bad hits since, I was admitted to make sure that my heart wasn't fecked. It's fine thank God. I'm badly constipated, and we think the pain is due to my shunt...Again. I also wound up with a throat or left lung infection. I'm on azithromycin. In summary: Nitro fecking sucks for CH. Mystina

Well, the other thing is, with any chronic illness, you become depressed. I've been told due to all that's wrong with me my psychiatrists and other doctors would be alarmed if I WASN'T depressed. I had depression before the CH though, OCD, PTSD and Insomnia so...XD Mystina

1. Age when CH began? 23 2. Age when became chronic? 23 3. Years chronic? 3.7 4. Does the number and/or intensity of hits (Kip level) vary throughout the day/week/month/year? Oh sure, it changes depending on when I need doses. In normal cycle I had 3-8 hits per day. In low cycle, 1-3. Intensity varies. 5. Do you have a continuous 'background' headache (migraine?)? From other conditions sometimes, not from the CH. 6. Please list effective medications and length of time effective. Baclofen, Diamox, Stadol, Zanaflex, Methadone, Morphine, and Skullcap. 7. What are you using now? Balcofen, Zanaflex, Diamox, Skullcap, Psilocybin, LSD. 8. How frequent are your chronic attacks? 1-3 times a day right now. 9. Head trauma history? Hit in the head with a plastic golf club at the a ge of 9 by accident. Left eye was black. Forceps used on me at birth. 10. Sinus problems / Surgeries? Chronic sinusitis through childhood, 'Windows' surgery preformed on sinuses at age 5. They went back in to widen them, and then again to remove polyps. I just added the 2 others at the end cause I figured it might be useful.

I think this is a pretty good idea Ron.

If you're in pain, and puking,for the past 36 hours and have a DBS... You need to go to the ER and get checked out. That could be a sign of something going wrong with it.

Veg, I know both Ricardo and I had a history of seizures. I haven't had one in over 10 years at this point. Seizures do REALLY weird stuff to our heads. http://www.scribd.com/doc/14732155/Partial-epilepsy-with-ecstatic-seizures as this article will tell you. I had some where I laughed like crazy. I've even read of people having an orgasm during a seizure. Hope busting helps you! Mystina

Hon, First and foremost, you gotta get a firm diagnosis. I've had TONS of post-lumbar puncture headaches, and they're horrible... But this could be all sorts of other problems too. It could be something that could kill you if they don't check it out properly. They could have seriously set something out of whack with making your spinal fluid too low. There are other headaches similar to clusters that are like you describe. Try taking a picture of your eye during the attack if you can. Second... Start keeping a headache diary! It might look to you at first like there's no rhyme or reason, but you don't know that. I'm chronic, and my hits aren't on a timetable. I tried keeping a diary of it to figure it out, but couldn't really, That doesn't mean that you won't figure something out. Plus 90% of Neurologists / Headache Specialists want you to have a headache diary. Third: I know you're uncomfortable with the idea of taking something illegal. Trust me, I was too! But there are several methods here on the board that are 100% legal that people are using to help their CH. If you have it, keep us in mind. You're welcome here no matter what you choose... That's the important thing, it's YOUR choice, and only yours. Hope you get relief soon hon! *hugs* Mystina

That happened to me at the ER today sort of! I was getting hit, due to the fact I've got ANOTHER sinus infection.... One of the tech's was wheeling me to CT scan and she said I never even knew about that condition until a few weeks ago when I saw a special on it... And she said if it was her, she didn't care if it was illegal, she would take the meds for it! lol I couldn't really reveal that it's what I do... I told her I was anxiously awaiting bromo, but I did tell her I knew Dan. XD Mystina

Has your sister seen you have a hit? If she has and she's still so heartless about it, please, allow me to educate her, with my fist. A lot of people don't refer to them as cluster headaches, but cluster attacks. Because headache does not describe accurately what we have. *hugs* I wish I could offer more, I'm glad you found us, and hope your cycle ends soon!

For me a K10 isn't planning suicide, it's compelled to commit suicide. Because at that point it stops being a matter of "I can't take this pain." to "I'll do whatever the hell will stop it. What will stop it permanently? Suicide."

There's a solution to the tank bothering you out of cycle. Send it back to the home health care company when it's not needed.

CHFather: Yeah, they helped, but not like the mushrooms or LSD for me. Mushrooms got me into low cycle, which RC seeds never did. I also get months of relief (low cycle wise at least) from the shrooms. I tried taking the seeds with OJ only, and it didn't seem to work as well. The alcohol seemed to make them stronger. (I'd have a minor trip.) The last time I took the seeds I had hell not vomiting 'em up. (As in, I was gagging them down, and felt like my body was telling me 'No. No more.') In short, I got some relief, but not enough.

Buzz, hang in there. *hugs* I personally used alcohol with the seeds because it made it stronger. Ricardo has posted that it's thought it might turn the LSA in the seeds into LSH. I just poured however much looked good in there. I used Vodka.

From Canada? Yeah, if you go to Canada Pharmacy. http://www.canadapharmacy.com/ They require a prescription. I know about this cause my allergist used to have to send us there to get my Ketotifen. Now a compounding pharmacy here has the ability to give it to patients here in Texas so I don't have to worry about it. CP served me well for like...3 years at least though. Maybe more. Saved my life for sure.

Happy Birthday Brad!!

I did a quick look up, that's not MDMA (and some people have reported MDMA making CH worse during cycle.) http://en.wikipedia.org/wiki/2C-B Not really sure what it would do to your CH, but googling it says there may be some cross-tolerance with LSD/Etc, so you might want to wait and try the seeds first.

As far as the basic definition goes, you're not chronic until you hit 1 year. http://ihs-classification.org/en/02_klassifikation/02_teil1/03.01.02_cluster.html