R U Chronic??

[Bonkers]

Please post only if you are chronic.

1. Age when CH began?

2. Age when became chronic?

3. Years chronic?

4. Does the number and/or intensity of hits (Kip level) vary throughout the day/week/month/year?

5. Do you have a continuous 'background' headache (migraine?)?

6. Please list effective medications and length of time effective.

7. What are you using now?

8.  How frequent are your chronic attacks?

9. Any other questions that would be helpful?

Thanks,

Ron

[MoxieGirl]

1. Age 42

2. Became chronic @ age 46

3. Have been chronic for 1 yr and a bit

4. Yes, my hits vary a lot, from 1-10, averaging a 6.

5. No, not a continuous background headache, but I do get a headache 5 days out of 7, and frequent migraines.

6. Topiramate was helpful for awhile, and the only one from the list of preventatives that I could tolerate. Was taking it for about 18 months.

7. Am now using seeds and shrooms. Nothing else.

8.  How frequent are your chronic attacks? (Maybe?)

Mine started out about every 3rd day, increasing to evey other day as the year went on.

Renée

[Bonkers]

Hi Renee,

Thanks for the post. When you've got a minute, I've got a couple of questions:

6. Did you quit using Topiramate after 18 months because it quit working for you or because you found something better?

7. Do you alternate seeds and shrooms or combine them? What dosage? How long have you been using them? Have they lost effectiveness over time?

8. Good idea. It's now #8.

I think you're chronic if you don't have breaks of 2 weeks or longer between attacks. Maybe you've been chronic from the beginning.

Ron 

[MoxieGirl]

Hi Ron,

6. I found every few months I had to keep increasing the dose of Topiramate to keep it working, until I had exceeded the max recommended dose, and then it stopped altogether. And to be honest, I haven't noticed an increase of attacks since coming off of it, although (until busting) they were a bit stronger than when I was taking it. There was a time, I must admit, I was happy to take it more for the appetite suppression benefits than what it was doing for my clusters.

7. A friend had sent me 2 doses worth of mushrooms, and I've had 6 doses of seeds, between 30 and 50 seeds each dose. I think the shrooms worked better for me, but I haven't had enough yet to prove it.

15 Dec 11, 1.1 grams mushroom

22 Dec 11, 30 seeds

1 Jan 12, 1.2 grams mushroom

10 Jan 12, 50 seeds

15 Jan 12, 40 seeds

25 Jan 12, 50 seeds

2 Feb 12, 46 seeds

8 Feb 12, 46 seeds

Each time I've taken a dose, the trip affects seem less and less noticeable. I haven't busted long enough to draw any final conclusions yet. Shrooms seem to help more with the shadows and post traumatic crying then does the seeds, but the seeds help some. It sometimes seems my attacks are slightly less frequent, and not quite as strong as before busting, but the stats on my spreadsheet don't support this. I'm still getting hit often, and just as hard. BUT, I think without the constant shadows in between, it doesn't seem so hard to bear.

When mine started, 5 years ago, I would get hit for a week or two, then have a 2-3 week break. Although saying that, I was probably chronic my first year, in 2007, although my records don't go back that far. I had a 7 month long headache, and frequent migraines in 2007, plus a high frequency of bad clusters. It was my 'Year of Pain'.

By 2010 I was having PF gaps of up to 23 days, and many gaps ranging from 12-16 days. Dec 2010 is probably when I really turned chronic, with my longest gap being 11 days since then, but averaged out for the year, my PF gap in 2011 was 3 days.

My average gap so far for 2012 is 4 days, the longest being 11 days.

By definition, I think, to be chronic you not only have to have less than 2 weeks PF gaps, but also it has to last for more than a year. My last gap 14 days or longer ended on 6 Dec 2010, when a cluster ended a 20 day gap.

Renée

[alleyoop]

By definition, I think, to be chronic you not only have to have less than 2 weeks PF gaps, but also it has to last for more than a year.

You're right Rene. 

Chronic as defined by the IHS:

Cluster headaches are considered episodic if they come for 7 days to one year apart with at least a 2-week, pain free break. They are considered chronic if they last longer than one year without a 2-week pain-free break.

http://www.bellaireneurology.com/headaches/clus_what_is.html

[Hipshot]

1. 45

2. 45

3. 9

4. Yes

5. No

6. Lithium and verapimil combo. Kept em away for nearly two years.

     Side effects were increasingly intolerable. Attacks began to break through after prolonged usage.

7. Using mushrooms. I also am getting relief...major relief, from occipital nerve blocks from my pain doc.

8. Frequency of attacks varied but a couple per day and one, at least one killer at 1:30am every night

My chronic diagnosis took a long time to get, as is usual for us. My attacks are no longer chronic due to shrooms and ONB. I never know when or what to expect but thanks to this board I get on oxygen to abort which all in all makes life pretty decent. Way the hell better than the bad ole days

Dan

[tingeling]

1. 23

2. Day one

3. 8

4. After busting yes. Pre no,  but got high cycle low cycle. Same times every year.

5. Often

6. Imitrex, first shots i used. LSD, around 9 months. Shrooms 6 months, seeds around 6 months.

7. Exercise, Astaxanthin, Russian Root and Schisandra, Red Bull, Coffee, icewater.

8. Low kips every 3 hour.

5.

[Bonkers]

Thanks for the correction, Renee. And thanks to those who have responded so far. When we're done, I'm gonna try to put all the info together and write some sort of (hopefully) meaningful report.

Ron

[tanner the first]

Please post only if you are chronic.

1. Age when CH began?  33

2. Age when became chronic?  33

3. Years chronic?  26

4. Does the number and/or intensity of hits (Kip level) vary throughout the day/week/month/year? yes with no discernible pattern regardless of altitude, physical location, long story that I will be happy to share but basically episodes within the larger egg of no episodes are random.

5. Do you have a continuous 'background' headache (migraine?)? No but I do get separate migraines with auras and all the trimmings (luckily they are not frequent and overshadowed by CH...LOL

6. Please list effective medications and length of time effective. No effective medications have ever been found with the exception of heavy narcotics which you must pay the piper for as soon as you stop or die. O2 was effective at 15 litres but only while actually strapped to the mask, never aborted one.

7. What are you using now? Red Bull, Cardio walks combined with cold air. I live in the north.

8. How frequent are your chronic attacks? Daily or nightly or both depending on nothing measurable.

As to possible additional questions...

1. Have you used a run of indo to rule out other types of ha

2. Have you been to one of the in house headache clinics to both diagnose, identify triggers and attempt to find working med combos?

3. Do you have concurrent medical conditions that need to be considered while considering treatment options?

My answers to all three of the above are are yes.

#1. more then once

#2. Michigan Headache Clinic, Dr Joel Saper, Diamond Headache Clinic, Dr Seymour Diamond

#3. Yes C.O.P.D. , an upper aortic aneurysm, Hep c, borderline hemochromatosis.

Of #3 above the hemo issue is the has the most prevalence to my case because it is essential that i avoid trace metals ie; iron, zinc, chromium, magnesium etc.

Also even though I have great interest in the D3 regimen which is being much discussed I need consult with my Dr. as it has been mentioned in conjunction with calcium which is also a metal (all minerals are metals), as well as being toxic if you already have a high blood calcium level.

OK, not wanting to write a book here so in closing I fully intend to try busting again. I had some success with shrooms before but I think did not have the nerve to use a big enough dose and did not stick with it long enough. I had zero success with large doses of LSA both wood-rose and RC.

Best Pf wishes to all and I hope to see you in Sept.

[Pixie-elf]

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.

[gizmo]

1. Age when CH began?

between 8 and 10

2. Age when became chronic?

33

3. Years chronic?

11

4. Does the number and/or intensity of hits (Kip level) vary throughout the day/week/month/year?

yes

5. Do you have a continuous 'background' headache (migraine?)?

no

6. Please list effective medications and length of time effective.

I guess you only want to know about the prevents...

BOL: the trial dosage worked for ~6 months

LSA: usually works for 8-12 weeks - for different reasons I haven't used seeds recently

7. What are you using now?

nothing

8.  How frequent are your chronic attacks?

up to 8 attacks per day

Oliver

[Bonkers]

BOL: the trial dosage worked for ~6 months

Dear U.S. Government,

Please!! We're begging here. Give us BOL now!

Sincerely,

All cluster headache sufferers

[CHfather]

Dear U.S. Government, Please!! We're begging here. Give us BOL now!

I think it's Dr. Halpern, Entheogen, and its current or future investors that we need to be begging.  In that ABC special that Ajax posted, the last sentence is something like "Halpern is hoping to start large-scale clinical trials [of BOL] soon."  Let us pray.  At the conference, he said he was hoping that the US trial would be "open label," in which people would just get BOL -- no placebos.  It wouldn't prove as much as a rigorous trial, he said (rigorous double-blind ones would be conducted in Europe), but it would get relief to sufferers.  Let us pray.

I sure would like to hear something about what "soon" might mean, and whether that open-label trial is likely.

[Ricardo]

1.  22

2.  24 or 25

3.  9

4.  Yes, but I have not been able to find a definite "schedule"  I have notice that the end of the summer seems to be prime time for me to be getting hit.  I have noticed that when I am doing good and having mostly just shadows, they tend to hit me more in the day.

5.  I have a strong painful feeling that I would call a shadow, definitely not a migraine, that seems to be there at least half of the time.  Same pain as my cluster (left eye feels like it's about to be popped like a grape), just not strong enough to make me do anything about it. 

6.  Effective medications for aborting have been Psilocybin, DMT, triptans, high dose opiates, ketamine, nitrous oxide, probably more...I'll keep thinking.  All these drugs have lost effectiveness after doing enough of them, but they all have worked again with a good break of time.  (The nitrous I can not comment on in this regard, as I have had very limited experience with it)

Effective preventatives have seemed to be LSD, LSA, LSH, but even when they are "preventing" it will usually only last 2-3 weeks. (Oh, but  how wonderful those 3 weeks are )

7.  Right now for abortives I am taking intranasal ketamine, and triptans when that doesn't work.  Strong Coffee and marijuana seem to make all my drugs work better.  About once a month or so I take LSD, LSA, LSH, or Psilocybin in the hopes of getting some good preventative action.  Usually calms down the intensity of the hits if nothing else.

8.  Hard to say how frequent.  I get hit with shadows every day.  Some days they end up progressing into full blown hits, other times they peter out to nothing by evening, like the past couple weeks for me. (Thank you LSD)  If I was pressed to answer I think I would say I'm getting hit somewhere between 1/2 to 3/4 of the year, with the rest just being shadows.

-Ricardo

[Bonkers]

I think it's Dr. Halpern, Entheogen, and its current or future investors that we need to be begging.

There's gotta be someone here who knows Dr. Halpern personally and could get some current info for us. Hello... anybody out there?

[razorPP]

1. Age when CH began?  49

2. Age when became chronic? 49

3. Years chronic? 3.5

4. Does the number and/or intensity of hits (Kip level) vary throughout the day/week/month/year? Yes, day, small hits  throughout the day, big hits late in evening and night; Some weeks lighter than others; months, spring storms and first cold months are worst; year, this year is better than last year on number of intense hits, maybe regular dose of d3 and rc seeds is helping

5. Do you have a continuous 'background' headache (migraine?)? yes, background pain around right eye, and right side of head.

6. Please list effective medications and length of time effective. No prescribed medicines worked for me.

7. What are you using now?  I use o2, d3, rc, and red bull.

8.  How frequent are your chronic attacks? the number of small hits varies throughout the day, always get hit harder between  5-9 pm

peace

[gizmo]

Chronic as defined by the IHS:

Cluster headaches are considered episodic if they come for 7 days to one year apart with at least a 2-week, pain free break. They are considered chronic if they last longer than one year without a 2-week pain-free break.

The current IHS definiton (http://ihs-classification.org/en/02_klassifikation/02_teil1/03.01.02_cluster.html)

Diagnostic criteria:

Attacks fulfilling criteria A-E for 3.1 Cluster headache

Attacks recur over >1 year without remission periods or with remission periods lasting <1 month

[alleyoop]

Thanks for the correction and clarification gizmo.  I thought they had changed it from two weeks to a month, but couldn't find the right publication to back it up.

Sorry for muddying the waters.