My Cluster Page
Welcome to My Cluster Page..
Contents
What The Cluster?
- Cluster headaches are rare, extremely painful and debilitating headaches that occur in groups or clusters. [1]
- A striking feature of cluster headache is that the attacks occur in cyclical patterns, or clusters — which gives the condition its name. [2]
- Cluster headaches do not appear to be related to other illnesses or to diseases of the brain. They do not seem to run in families. [3]
- You can get 2 types of cluster headache: [4]
- Episodic: This type is more common. You may have 2 or 3 headaches a day for about 2 months and not experience another headache for a year. The pattern then will repeat itself.
- Chronic: The chronic type behaves similarly but, unfortunately, you get no period of untreated sustained relief.
- Treatment: There's no cure for cluster headaches. The goal of treatment is to help decrease the severity of pain and shorten the headache period. [5]
My History
In 1996 while a freshman attending Alfred State College, I unfortunately contracted an extremely rare and deathly form of Meningitis (flavobacterium meningosepticum [6]) as well as encephalitis. [7] Forced to withdraw from school, I was then admitted to University of Rochester Hospital where I spent over 9 months in Intensive Care as a medical case study. Doctors had never before seen this extraordinary form of meningitis in patients over three years old and were somewhat clueless as to how to treat it. During this hospitalization I was prescribed strong doses of Immunodeficiency medications [8] as well as other medicinal cocktails. I was also subject to multiple spinal taps (also known as Lumbar Punctures [9]) and various other procedures. My release from the Intensive Care Unit was followed by another 7 months of home health care. The majority of this was time spent within the confines of my home with continuous intravenous therapy via a PICC or PIC line.[10]. Fortuitously, I recovered without any type of complications that usually occur with such an illness. Doctors believe that I contracted this form of meningitis from a prior scaphoid [11] surgery that I had on my right wrist due to a fracture I acquired while wrestling my senior year of HighSchool. Upon my recovery I decided to continue my education in horticulture and went back to Alfred. I believe it is important that I emphasize that I experienced no loss of physical or mental capacity from my experience with meningitis other than having a deficient immune system - which doctors explained would take a considerable time to fully recover (around ten years).
In February of 2003 at the age of 27 I began experiencing Cluster Migraines (Cluster's are classified as being independent of "Migraines" however the term "headache" does not effectively associate the pain and debilitating factors while explaining to non-sufferers). Prior to the onset of these headaches I was working as a Greenhouse Manager charged with the care and production of various perennial and annual plants. As mentioned before, this had been an aspiration of mine since graduating with a horticulture/floriculture production degree from Alfred State College. Due to the inability to function as any normal human being, I was unable to continue to work effectively and immediately sought medical attention. I will refrain from describing the various personal mental distresses I experienced during this period of time, soley due to the continuous struggles I still experience.
Since Being Diagnosed
Since being diagnosed by a neurologist, I have been prescribed numerous medications that aimed to prevent or control the cluster headaches I experience. At any given time for the first 2 years after receiving medical care, I was taking at least six or more of different medications. Some of these include:
| Depakote | Imitrex | Topomax | Indomethacin | Trileptal | Clonazepam | Prochlorperazine | Lexapro | Klor-Con ER |
| Celebrex | Zoloft | Paxil | Cyclobenzaprine | Effexor XR | Alprazolam | X-anax | Oxycodone | Percocet |
| Flexeril | Keppra | Reglan | Metoclopramide | Diazepam | Adavan | Demerol | Morphine |
It is important for me to explain that many of these medications were prescribed to counter-act the side affects of the primary medications. For example, while on Depakote, I experienced [12] quite a bit of abdominal pain and nausea, therefore my Neurologist prescribed Reglan. Soon the list ballooned and I can remember looking at the daily pill box that contained 11 different medications with great repugnance. Everyday I felt as if I was a "space ghost" (i.e. someone who was just taking up space and not really cognizant of anything going on around them). The nature of many of those drugs changed my demeanor and "being". Not long after that day, I decided that the madness would stop, especially because none of the medicines were even helping.
The Days After
I wish that I could say that the medications were not needed and that I wasnt aware of any major difference with not being on them. However, this is not the case. My headaches worsened and I was left clueless as to what to do. My Neurologist was furious with my decision and said that they could no longer advise me in my medical care. Although I was no longer a space ghost, I was still experiencing the full brunt of clusters without any means of control. I spent many days and weeks for a few months in and out of various hospitals and emergency rooms. So much that when I walked in, the receptionist would immediately refer me to some dark corner or "utility room". I am not sure whether or not they were more worried about me or about the distraction in the waiting room. Regardless, I found my "welcome" in these hospitals wearing thin which as well resulted in a decreased standard of care. Doctors could not understand the choice I had made and ultimately tuned me out.
No Where To Turn
With no place to truly turn to, outside of my immediate family, I was forced to make concessions. I did a great amount of studying regarding various treatment techniques as well began a journal to try to help discover identifying characteristics of the onset of these headaches (for example, types of food or activities that preceeded the headache). I have to admit that I learned much more from my own investigations then from the medical staff that attended to me. After examining my consolidated medical records I was able to identify that my magnesium levels were always deficient during these trips to the hospital. To this day I still do not know if there is a scientific link between the two factors (I will refer to this later). I as well began to chat with other cluster sufferers and visit webpages that dealt primarily with support. This I believe has led to my ability to cope with the other aspects/symptoms that were never addressed outside of medications.
Call It Luck
Luck and Cluster Migraines normally would'nt appear in the same sentence unless you said, "I was lucky never to have a cluster headache." Although, the concessions that I made previously were proving to be either A.) the right choice or B.) my clusters were in remission (in which case I considered myself lucky). Some of these concessions were:
- Taking Magnesium Oxide [13]
- Taking Imitrex as soon as I felt the signs of a headache (I was able to understand the precursers due to my journal entries).
- Request Pure Oxygen at the hospital when I was unable to fight the headache out on my own. (believe it or not, many doctors - at least in my area, are uneducated about cluster headaches and how to care for patients who have them).
- Change the manners in which I ate, slept, and lived (again this was aided by informing myself through investigation and observation and writing them down in a journal).
As luck normally does, it runs out at some point in time and being in the nature of cluster headaches, they ultimately return. Hence the name Clusters... I am not able to say for sure whether my decision to stop taking all the prescriptions was or is the best choice that I have ever made, but I do know that since that revolt I have regained a sense of normalcy. I say a sense of normalcy because I am still unable to perform some of the activities that once were so easy for me to do. This includes being able to work as a Horticulturist, a field that I have loved since youth. I have found that it is very difficult for me to rely on my "physical" self, a notion that I still struggle with. Each day I see reminders of the past including pictures and numerous trophies from my highschool and collegiate football and wrestling days. What once was a source of pride is now a cause of antagonism.
Oxygen Therapy
First to establish a basis of Oxygen Therapy for Cluster Headaches, I have added some very reputable links and studies...
- The treatments of choice for acute cluster headache are oxygen (7 L per minute for 15 minutes), sumatriptan, or a combination of the two (Table 1).15-21 Both therapies appear to be underprescribed. [14]
- The inhalation of 100 percent oxygen, via a tight-fitting mask at a flow rate of 8 to 10 liters/min for 10 to 15 minutes is dramatically effective for about 80 percent of those patients for whom this approach is feasible; oxygen is particularly effective for nocturnal attacks. This mode of therapy, although recommended by Horton (1952) over 35 years ago, has only recently been substantiated by controlled trials (Kudrow, 1981; Fogan, 1985). [15]
- A 2002 review of oxygen therapy in cluster headaches concluded:
- “According to the experts on cluster headache, oxygen therapy is the treatment of choice for attacks. This use is only supported by a single methodologically sound study including a small number of patients. Although pharmacotherapeutic options exist to treat attacks, they are not reliable and safe enough to replace oxygen therapy completely and to relieve the huge suffering related to this disorder." [16]
Furthermore, my experience with O2 Therapy has demonstrated to me beyond a reasonable doubt that it is an effective, non-obtrusive means to abort a cluster. Unfortunately, I, as well as other Cluster Headache sufferers who do not have private medical insurance have a difficult time accessing pure oxygen outside of a trip to an emergency room. This seems inconceivable for some of the following reasons:
- The entire registration and waiting process only adds to the agonizing pain of a cluster (i.e. the lights, sounds and frustration)
- Many E.R. Doctors have a tendacy to treat these headaches with multiple drugs such as Reglan (Nausea), an anxiety medication, a muscle relaxor, as well as a pain medication. (this may or may not include the insertion of an IV) - these all may seem normal and insignificant, however, when experiencing a cluster these procedures are very aggravating and add to the frustration.
- The cost of E.R. trips are enormous!
Now Imagine that you do not have private insurance and out of necessity must use Medicaid or Medicare to pay for your medical expenses, home Oxygen therapy is not even a consideration unless you have a blood/oxygen saturation level of 88 or less. Regardless if you have a valid prescription from a doctor or specialist such as a neurologist. They (Medicaid & Medicare) would rather pay for the outrageous emergency room visits rather then a oxygen tank at your home. The out of pocket costs include:
- $31.00 for the use of a tank, this lasts around 4 hours with a 2 litre flow, and is charged everytime you refill the tank. (which could prove to be somehwhat exepensive if used at the recommended rates as stated above but depends on the frequency of headaches and use)
- $31.79 per month for the use of their regulator guage.
Obviously, this is quite costly to someone who is unable to find a means to effectively work and must live off of a disability check. But still remains cheaper then a standard emergency room visit!
More To Come
I will be adding some more to this page in the near future. --DaughertyBw 21:02, 15 September 2007 (PDT)
Comments
Feel free to leave any comments, questions or concerns that you may have...
- (Posted from my talk page)
Hello, I am not sure if it is you who has the section on cluster headaches or not but the link led me to you. At anyrate I just wanted to let you know that I suffered from Cluster headaches from age 8 until age 29 and was finally diagnosed. The doctor put me on "Klan" (I think that is how it was spelled - it was I believe a medication normally prescribed for high blood pressure even though I don't suffer from high blood pressure). I took the medication for about 2 weeks or less and the cluster headaches disappeared completely. I have never suffered from another one. I am now 45. User talk:67.172.70.67
- Bryan, After reading this, I think maybe you and Regula Frey (my partner) should talk. She was diagnosed with MS around the age of 19, and has similarly found her own (non-medical) path. She's 45 now. RegulasJoyOfMovement.com -- TedErnst | talk 11:56, 12 September 2007 (PDT)
