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Question
Posted by: Pallie | 2006/07/26

Cluster headaches plus bundle

To whom it may concern

I am a 46 year old male and I am suffering from the following disorders all but migraines only for the last 5 years;
1. Chronic Cluster headaches.
2. Fybromyalgia
3. Several hernia’s on my stomach
4. Major suicidal depression

Following my medical history;

Cluster Headaches
I have been suffering for 25 years from wrongly diagnosed migraines and in my job situation I was transferred almost every 6 months to another town, on visiting a doctor for my continuous headaches all the doctors soon embarked on major testing to eliminate pathological reasons for my headaches, I have wasted thousands on specialists and neurosurgeons whom all declared me free of any apparent pathological reasons. Then only would the doctors accept that it is just pain and would all very unwillingly treat me with injections during my extreme bouts which has always been at its worst in the evenings on hot sunny days, the regularity of this often had me face the wrath of all doctors wanting to know how it is possible that I get it after hours and they have to be called out. Some doctors would scold me and turn around and simply walk away from me. Ive been labelled an addict and has had many lessons on pain receptors being agonised by my use of pain killers and have been called virtually everything. My blood pressure during an extreme bout would also always be between 100 and 120 in the systolic base and would drop to normal once the pain has receded. I have a history of hypertention and I am using Pharmapressco and Ziak to control it which works fine outside the headache bout times. I have been refused treatment at the XXXXX private hospital casualties because of complications where a student nurse injected me very superficially with Voltaren which caused inflammation of the injection area, this fact was turned around by the nursing staff as that they feel they cannot inject me further as there might be complications and they do not want to be part of it. According to the Hospital Manager Dr XXXXX whom I was told issued the non service instruction, the nursing staff at the hospital send him an e-mail stating that they do not want to assist me any further, his comments on that was that he cannot force his staff to do anything. He also accused me for drug seeking and stated that a certain Prof Meyer could take all the pain away from me without any drugs. As he is a world renowned specialist in the field of Cluster headaches and fybromyalgia. I have always requested the doctor to either inject me with pethidine or sosanol and that they could ulternate the chosen medium as I myself is scared of addiction. I have done extensive studies on the internet regarding Cluster headaches and the misuse and abuse of pethidine and other drugs, Dr. XXXXX amongst others calls these medical studies and results irresponsible and lies. Even though extensive studies and research done by world renowned professors and specialists in the field spending billions of dollars in the USA and Europe with proven studies is shown, the normal GP with a Mb Chb in Middelburg finds it irreconcilable with their line of thought. And I am made out to be drug seeking. This after everything regarding Chronic Cluster headaches available on the information highway is looked at both for and against.
Currently I am living day to day with pain that at times want to drive me up the wall and has on several occasions almost ended in tragedy. I have yet to find a GP that is willing to listen to me and assist me. I am continuously put on non helping so called prophylactic drugs which does absolutely nothing but make me feel sick and burdens my finances.

Fybromyalgia + Several hernia’s on my stomach + Major suicidal depression

After intensive tests done by a specialist in the field in Newcastle Kwa Zulu Natal I was diagnosed with Fybromyalgia. I stand up every morning with excruciating pains in my muscles and joints, if I sit down for a while the same effect is experienced, the symptoms presented itself in hospital after a botched Colon operation which ended in massive septacemia. The doctor removed a large part of my Colon due to diverticilitus, he did not put on a colostomy bag and did not put in a nasogastric tube. On the third day after my operation they inserted the tube causing me to vomit and have convulsions, which I believe was the time the leak started on my attached colon. They send me home on the fifth day. On he 7th day at about 09H00 I walked outside as I had a very high fever and extreme pain and stood leaning with my hand on my cars bonnet when my stomach burst open and the contents fell out hanging, it was the most foul smell I ever experienced. I knew that this spelled basically the end for me and was rushed to hospital where doctors told me that they could only give me medication for the pain as I would not make it. I opted not to take any medication as I experienced no pain. I was moved into a private ward and left alone the entire day, My late father came to me that evening and used the shirt I had on to clean me, he waited untill the following morning at my bed and at about 09H00 a doctor came to see me who then told me that he was going to try and help me but that my chances was minimum and I agreed to him trying. I experienced near death experiences during the waiting time. On waking up in ICU 10 days later I learned that a microbiologist was trying to identify the bug that was destroying my flesh. I experienced very bad treatment from there. The physio therapist insisted I walk whereas my feet was so swollen and painful of what I then thought was gout that I just could not stand on them a very refined male nurse at the day I was due to leave ICU in a rage actually ripped the stitched feeding tubes from my flesh because I could not stand on my feet. I complained to my doctor who in turn punished for complaining me by changing his instruction of sucking out the excess fluids through the tube in my mouth to one where it has to come out under its own pressure in my stomach. With the words I will show you. I healed after experiencing several bad episodes where I opted to take over the management of my own wound, Doctors would emphasise sterile methods and nursing staff would use the syringe as a plunger, extracting and reinjecting pus into a whole in my flesh, the sinuses just kept becoming bigger and bigger. Eventually another operation was done where the wound was left open and again their poor sterile consciousness forced me to take over the wound management again.
In the mean time a colostomy bag was now attached during the second operation but the mouth of the stoma was far below the skin surface resulting in a poor fit of the stoma bag and the excrement distributed under the waver before entering the bag, do you know how human excrement can burn your flesh?
This episode lasted a full two years with one operation upon the other the last being inserting a net as I had 5 hernias on my stomach. Now 4 years later the hernias are back and even more painful than before.

I am in constant pain 24hrs a day from the above sometimes combined sometimes a separate issue.

What can I do, without becoming another guinea pig for some GP trying to prove something, to lead a quality life, I have been medically boarded because of my aggressive psychological bouts during pain periods, I am now losing my dignity because of an unfair label of drug addict being hung around my neck, my self-worth and worth towards my family and friends has become worthless in my eyes. What is left for me to do?

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Our expert says:
Expert ImageHeadache expert

Dear Pallie,

Having dealt with many patients over the years with headaches similar to yours, I am very aware of the fact that often patients are treated the way you have been when the practitioner involved can’t find the cause of the pain.

Since you have such a long and complex history, it would be difficult for me to give you satisfactory advice without speaking to you. If you call me on 0825555763, I give you my word that I will do everything in my power to help you get rid of the headaches.

I am going away for a week between 29 July and 5 August, so please try and call me before then. If my phone is on message, I will return your call as soon as I can.

The information provided does not constitute a diagnosis of your condition. You should consult a medical practitioner or other appropriate health care professional for a physical exmanication, diagnosis and formal advice. Health24 and the expert accept no responsibility or liability for any damage or personal harm you may suffer resulting from making use of this content.

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