TESTIMONIALS
Why is this research so important?
The following comments have been taken from our survey responses. This first group are examples and explanations of how cluster headaches can affect the lives of cluster headache sufferers and their families.
How Cluster Headaches effect my life:
I lost my job, my spouse, my residence. I had no money and lived in my car for 9 months while I was under fire from headaches. It's hard to describe to someone how debilitating this really is. I was spending 7 or 8 hours a day on my knees in limitless agony, while the world went on around me. Since most people don't understand, I suspect they thought I was exaggerating or just plain insane. I am now in debt and jobless. My credit is trash. I have little hope of ever owning a home. I had no hobbies or anything 'fun' in life to look forward to. Nobody would want to share a life with someone in this kind of situation. Now I dream of having a normal life with an understanding spouse and a decent job and just being grateful that the pain has mostly subsided. I dream of not having to make excuses or just get up and leave whatever scene I am in.
43 Y.O. Male
I work for myself, partly because I want to and partly because I feel I couldn't hold down a 9 to 5 job with this condition. My income is directly effected by the amount of effor I put into my business. During a cycle, I get an average of 60 mins sleep per night for about 2 months. I am "running on empty" during the day and do the bare minimum to get through the day. I know I have lost business and long standing clients due to this. The worst part of each attack is having to try and avoid family members. It's almost like I am embarrassed to be seen in that condition. My teenage kids ask if friends can stay over, and I want to refuse (I don't) because it's just another person in the house to try and avoid. I feel so bad when I wake up in the spare bedroom, because I know how this makes my wife feel. B. To not have to deal with clusters, that would be like having a real life again. I could really get my business off the ground. I could start travelling to europe on holiday each year like I used to. I could have a proper relationship with the rest of my family, not one that is all about the bloody headaches.
36 Y.O. Male
I am incapacitated 16 hours a day every day. I can not focus or concentrate to perform any mental task. I am completly consumed when I get an attack. I have been on disability for the last 4 years due to chronic ch. I was making $75,000 a year and I lost all that and it put a finantial hardship on the family. I am unable to do any housework, cooking and cleaning. I can't interact with my kids by playing games with them or helping them with their homework. The pain level makes me short tempered and quick to blow up at people. I isolate myself most of the time. CH has caused me to feel suicidal almost all the time. I did have a phycotic eposode the drs attribute to being under constant chronic pain all the time. I just lost it. Heat makes my ha worse and more intense so I can't cook or go outside. While I was working I would blow up at co-workers and disapear for hours at a time because my ha was so bad I just couldn't stand to sit at my desk. If ch suddenly disapeared I would reenter the work force and give my family all of my evening time and pick my hobbies back up.
38 Y.O. Female
Right now, it is hard to imagine life without cluster headaches. I have been chronic for over six years, and since July of last year, I have been getting between 6 to 12 hits a day. In the past three weeks, I have not had less than 10 hits a day. My marriage has ended, indirectly due to cluster headaches, my work career is ended, my financial status is disasterous. I cannot plan to attend any social function. I cannot work. My life is down to waiting till my next hit, and hope that I survive it. Many times, I hope I don't. I have already had two heart attacks, but I can't say that they are caused by my CH, but I can't say they weren't, either. My second one happened while in the hospital for a DHE drip treatment. Have cluster headaches affected my life? Hell yes! It has brought my life to a virtual standstill. No one should have to live with this much pain so often. This is not living.
54 Y.O. Male
Cluster headaches have introduced me to a pain that I never thought imaginable. I am currently losing my job in the Air Force after 13 and a half years due to this condition. I am in a constant state of paranoia because I have no idea when the next attack will come. I hesitate to drive long distances alone. I am not social at all for the same reasons. Words could not possibly relate my feelings to have cluster headache attacks disappear from my life.
31 Y.O. Male
The condition of cluster headache is horrible and debilitating. It affects almost every aspect of daily life in a negative way including family, church, work and leisure activities. Events often have to be canceled or postponed based on the fact that "I have a headache". It's a terrible condition to have. To have cluster headache pain gone from my life would be liberating. That would mean more time to pursue personal relationships, business goals, and just live like a normal person year-round.
35 Y.o. Male
CH runs my life despite me attempting to not let it do so. I cannot go anywhere without thinking about when the next attack is likely to occur, and making sure that I have access to the necessary abortive medication. The pain of CH is only superseded by the pain I feel when my 4 year old daughter sees me going through an attack. I am always frightened; always knowing another attack will occur but moreso because they appear to be getting worse over time. I also fear that this condition maybe hereditary with the obvious consequences which I do not want to think about. If my CH should suddenly disappear I would go back to leading a normal life, but I shall never forget ...
39 Y.O. Male
Cluster headaches have ruined my life! I contemplate suicide everytime I get a headache. Imitrex is harse on the heart. The financial burden has taken me broke. My girlfriend left me because she didn't want to see me die. oxygen freaks people out. Please get grant money to solve this disease and cure me. I have had enough and am at the point of ending these headaches once and for all.
43 Y.O. Male
Clusters have made the last 20 years of my life very difficult. This year has been the worst in the last 11. After going to a headache clinic in 1992 and finding out what was wroing with me I finally realized why I hate Memorial Day, Labor Day, 4th of July, Halloween and Christmas. I always have ch during these times. I got divorced in part due to clusters, I tryed to commit suicide twice while I was married the first time. I'm remarried now (6 months) and my new husband is getting very angry with me because this year I've had ch since January with only a few days pf. He keeps telling me I'm not normal and I need to find some other way, then going to my Dr., to stop the ch.
39 Y.O. Female
I remember how I got made fun of when I was 15 and spending the night at a neighbors home with several other friends when I had an attack. I went outside (about 2 feet of snow) and was pushing my head in the snow trying to get some relief. Lots of jokes were made after that one. After I got married, my wife didn't know what was wrong with me. I tried to hide it from her, but obviously that was impossible. I remember how afraid I was the first time she saw how much pain I was in. She wanted to call 911. Thank God she is understanding whenever I am doing battle with the demon, even when I am begging her to smash my head with a baseball bat.
29 Y.O. Male
First, to understand how cluster headachs effected my life, you need to understand, that for the most part you could easily say that they DEFINED my life. I started having them as a child of around 7 to 9 years old...and I am chronic...I have had headachs every day almost of my life...I honestly don't even remember what it was NOT to have a headach. Sometimes there ok and I can deal with them...I scream, curse, whatever, and just put up with the pain...othertimes, I wind up at an emergency room and finally give up and just get shot up with something strong enough to stop it...at least for awhile. To understand how they effect my life, you really then have to understand me...and that would take too long. I was married...but that didn't work. Bless her heart, she was (and still is) one of the FEW people that understand just how bad these are...she watched me as I screamed, cryed, threw up, begged, pleaded, tried everything on earth...so how did it effect her????? Hell, how can I allow myself to let a person that loves and cares for me, live with me day in and day out knowing she is helpless to do anything. Is that fair to her? So, I ended it. I made sure she no longer had to feel like she had to set by helpless. We are divorced now. We still get along as best friends, but at least now, in my mind, she is releaved of the weight of knowing she can't help...because it is no longer her problem. She no longer has to set by day in and day out and watch.
45 Y.O. Male
As a 26 yr sufferer, and an informed sufferer for over 15 yrs, I can writhe in pain at the drop of a hat knowing full well that anyone who may happen upon me would mistake me for the "Recipient of all the Torment of The Earth at That Moment". Hideous as I look, I feel. I become a worthless blob in my home, crying, whimpering, spastically being launched around by exhaustingly erratic physical shocks of pain that bolt through my eye and head. My boss has known for years.. and he lets me lie down in the dark on the cold floor if that's where I need to be for some time.... I'll be back to work as soon as I can see again.. probably won't be too long.. seldom is. But 26 years IS a long time... and I know it didn't go away today. I think I'll buy my first handgun at 60, I don't want to be way old and still feeling these tortures.
43 Y.O. Male
I thought perhaps, that I would start this essay with the worst things about being a person with cluster headaches. The first thing that came to mind was the pain, of course. But then my 12 year old came up behind me, to ask me for help with her homework. And there's my answer. My children - 2 girls, 12 and 13 years old, are beautiful, smart and fantastic home healthcare workers. I think I must have the only 2 children who use the words, "I can't because my mom has one of her headaches," or "Mom, do you think you'll have a headache, or do you think we can go?". It's disgusting that they don't know anything different from this. For years, I lost jobs because of calling sick all the time. They just don't get it when I call in and say that I haven't slept in 2 days and I have a headache. I should have tried to tell them what I really was going through, but I don't think they would believe me if I called in to say that someone had stuck a hot poker attached to a drill bit into the left side of my head and out of my eye. What do you think? Financially we are spent. I filed bankruptcy in November of 2002. When I went in for the "interview" as they call it, the rep is supposed to "go over" what happened and what I could have done to prevent this bankruptcy. When it was my turn to interview, the lady looked at the list of creditors and ultimately told me that she was shocked that I didn't include more credit cards, that 98% of my debt was due to medical bills. I had to file in order to keep my house. Pretty pathetic all for a headache. Look. I don't want sympathy. I want respect. I want understanding. I want someone to hear me. Hell, it doesn't even have to be me that they hear...just any one of those "clusterheads". I want a cure.
37 Y.O. Female
They're a trip into hell every time I get one. The pain is nearly unbearable. And sometimes what is almost as bad as the actual pain of the headaches is the lack of understanding by anyone who DOESN'T have clusters. A good Neuro is sympathetic, but co-workers, friends, etc. just don't know. Sometimes I'll mention having headaches to someone & they'll say "Oh, yeah, I know what you mean I get bad headaches too sometimes" and I think - no, you don't. It's like comparing a paper cut to having your arm amputated by a table saw. As a man, I know that other guys will snicker a bit, thinking I must be weak or a drama-queen to say that something as simple as a headache could wreak so much havoc on me. And the fear and anxiety of entering a cluster phase is terrible - I just know it will have SOME adverse effect on my relationships/work before they go away again. They're awful.
37 Y.O. Male
I have had a rough life because of these headaches so ruff that one evening I sat at the edge of my bed with a loaded colt 44 positioned between my lips, I was crying, but I can't remember if I was crying from the pain my headache was causing or from the fear of dying. I thought to myself one bullet and five seconds is all it would take to save me from a lifetime of agony and despair! That was foiled when my roomamte walked in and had taken the gun away from me and called for help. Have I thought about doing it sense, sure I have almost every year, however I relize now that curing my pain in such a way would cause my family equel amounts of what I would be running away from. So now I sit back and wait, wait for someone to say they can take my pain away, a pain that most people have no knowledge of just how bad it is.
33 Y.O. Male
Pain is fleeting, the hour or two or three or four, will end. The true horror of the condition is the anxiety and frustration and debilitation surrounding the rest of my life. When will it hit me, will I wake up at 3 or 4 and pace for hours. Will I be able to Iron my shirts or concentrate on cleaning something-- or simply endure the pain? Will it hit me at 2 or 3 or 4-- or during court; excuse myself, again. I took a job that I like but that I truly don't want, so that I can work around the HAs. They are under control now-- but for how long.
38 Y.O. Male
The following are but a small sample of responses from people that have treated their clusters with mushrooms, LSD or LSA.
Testimonials
This treatment has DRASTICALLY changed everything! We have kids (young
adults) who never knew D without a h/a. I NEVER knew him without a h/a! We have
been able to travel, sleep together, and deal with everyday life . . all
without the company of the beast. Even the stress that we have had to endure
didn't allow the beast a way back . .. before, I would have had to deal with as
much as possible, in an effort to keep D from getting whacked . . .it was nice
to be able to share the load! If I could do anything differently, it would be
to have been more forceful about keeping up with the maint. doses.
D &
kim
I spent the first 26 years with cluster headaches misdiagnosed and
treated with all the wrong medications. I've taken migraine meds, sinus meds,
TMJ meds and spent enough money on dental work, chiropractics and acupuncture
and massage to put more than one of my kids through college. I was finally
diagnosed in 2000, a few months after I became a chronic sufferer. I spent the
next 4 ½ years on a wide variety of CH meds and treatments. None of them
worked very well and each of them stopped working eventually. Starting in
February '05 I found significant relief with an alternative treatment, kudzu,
which lasted until I tried to taper off of it. This made kudzu essentially
ineffective for me, as well. Over the last year and a half, I followed the
progress of those who were trying these treatments, and was quite impressed
with the success stories. I decided that I had to give it a try. The quality of
my life had been eroding pretty steadily in the last 5 years, and having found
some success with kudzu, I wanted to get my life back again.
I took my
first dose on July 20th and have followed up with 3 additional doses so far.
I'm using a combination of CB treatments and have been quite pleased with my
results so far. I have gone as long as 11 days without have to take any kind of
med or treatment for CH. My goal is to stop this (5 year long) cycle and be
able to only maintenance dose every few months. This has truly given me the
BEST results I have had with any treatments and meds I've tried. I really feel
like I'm getting my life back.
~nani
Survey Responses
Will you continue with psychedelic treatments?
Absolutely, a miracle after 27 years of pain. Thank you!
42 Y.O. Male
I no longer live in fear of cluster headaches. This treatment has changed my life. For the pat 4 years I have been able to stop my cycles and have prevented one altogether. Yes I will continue this treatment.
28 Y.O. Male
Yes - it is very early days, but I have now had my longest pain free remission period in 18 months.
40 Y.O. Male
I have found LSD to be a miracle. I no longer use the substance, but if my cluster headaches returned I would not hesitate to resume use.
26 Y.O. Male
YES !!!! the results i am having now are far better than everything i tried before ! i can break a cycle in 5-7 days !!! it is good knowing when the pain will go away...it makes the 1 bad week bareble. as i said, i just started using preventive doses, with succes, but i think that during the winter it is diff. 3 months inbetween doses seems too long.
33 Y.O. Male
Yes, if available at the time of my cluster cycle, i will continue psychedelic therapy because it seems to work effectively with few treatments.
34 Y.O. Male
Absolutely, I would be a fool not to use something that produced such excellent results without side effects. LSA put my clusters into immediate remission. Possibly could also have been the result of the psilocybin and LSA working together.
48 Y.O. Male
If it was legal or I had a reliable and safe source I would indeed.
39 Y.O. Male
Back to Clusterbuster's home