Just Need Help!

[SaiofETI]

I am a 31 year old male who has suffered from severe headaches for almost 5 years now. I have sought medical attention from various sources including multiple neruologists. I am currently disabled from these headaches which have been classified as Chronic Cluster Headaches.  I have tried the gammit of medications and have kept a journal as well of the occurences of them. Here is some background information which I have previously posted on "My Custer Page" which is located at (http://www.aboutus.org/My_Cluster_Page)

In 1996 while a freshman attending Alfred State College, I unfortunately contracted an extremely rare and deathly form of Meningitis (flavobacterium meningosepticum) as well as encephalitis. 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 as well as other medicinal cocktails. I was also subject to multiple spinal taps (also known as Lumbar Punctures) 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. 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 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 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, Xanax, 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 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.

read below for more..

[Carol in PA]

Do an internet search for migraine, magnesium.  There is a connection between magnesium deficiency and many symptoms, including headaches.
Magnesium is not absorbed well by the intestines, and magnesium oxide is VERY poorly absorbed.   Try magnesium glycinate.
I'm using this one, which has Magnesium as magnesium citrate, taurinate, glycinate, and succinate.
http://www.iherb.com/ProductDetails.aspx?c=1&pid=1415

Wishing you the best,
Carol

[SaiofETI]

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.

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 as well began to chat with other headache 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. I went for about an 8 month period where I had no severe headaches, Unfortunately the headaches have returned. Currently I am taking Magnesium Oxide daily (over the counter) and Imitrex tablets as soon as I feel the onset of a headache.

I now have about 4 headaches per week. each of these severe in nature and last almost throughout the day increasing and decreasing in nature. I have decided that I would try and speak to a few different neurologists and have had a few referrals. The first neurologist, basically told me that he didnt think I had Cluster Headaches. this was without any type of examination, nor without a complete medical history. Personally I could care less about what name anyone wants to give them and more concerned with treatment. I am tired of doctors such as the recent neuro I have seen who was already trying to prescribe me "Facilate" before he even shook my hand. Needless to say I will not be returning to his office. I have since had another referral to another neurologist as well as to a headache specialist at the Univ. of Rochester Hospital. These appointments are still some time away. I think it is important to add that looking over some of my medical information, including my most recent MRI which surprisingly was in 2003, I found the following:
     "A single punctate approx 2mm signal hyperintensity in the left parietal deep subcortical white matter. In Isolation, this is a non-specific finding. A 6 - 12 month follow-up may be of value to reassess its size."
As of yet I have not had any type of MRI to reassess the size, nor do I know whether this is of significance. My primary doctor does not want to "get involved" for lack of a better term in the treatment of these headaches and would rather just referr me to someone else. I really could use some type of idea of how to go about receiving adequate medical care as well as opinions on some of what I have listed in this post. I appreciate any thoughts and am prepared to act upon them. Thank You!