Hey everyone,
I am not a migraine sufferer and don't get headaches, but I can empathize with all of you as the closest person in my life has had 24/7 headaches/pains for the past year and it's excruciating to witness.
I haven't been able to even get this far because normally when researching or looking for information I end up in tears or shaking out of fear that this will just never go away. So I end up booking an appointment one at a time hoping to find relief.
He describes his symptoms like this:
I have put my notes in square brackets
- Drooping eye lid [he says he feels like one side of his face is drooping, although it doesn't manifest physically]
- Jaws and teeth hurt (not so much HURT, but experience a kind of magnetic pulling sensation - limited by words here but that's the best way I can describe it) [He describes some kind of "magnetic" feeling on the roof of his mouth too, I obviously cannot relate]
- Drooping sensation of right side of face [again, he feels that his face is actually drooping and swears he can see it. I can't see it at all, his face looks symmetrical to me]
- Intense pull behind left ear in temporal area
- Feels like I'm wearing a very tight hat which has been twisted to the left
- Permanently squinting
- Sometimes can barely see in front of me and can't focus on a single point
- Sensations sometimes move on a second-by-second bases like a gel-like substance slowly moving around my head and face
- Constant ringing in my ears / blocked ears
- Visual Auras
- Very uncomfortable asymmetrical feeling throughout my face
- Visual snow
- Tightness in left side of neck, but mobility in right side of neck
- Has seen chiropracter and his C1 is out to the left, C2 is out to the right
He has taken the following drugs with no relief:
- Advil
- Various Triptans
- Topomax
- Pramin
- Deralin 40
- E-Mycin
- Topiramate
And more but the empty bottles have been thrown away. These are just listed from what I found in his cupboard.
He is very debilitated and has moments of extreme despair. His headaches have taken
Here is a quote he wrote to one doctor describing symptoms:
Quote:The pain is constant, every second of every day and varies in intensity seemingly completely randomly. It often causes horrific insomnia where it sometimes prevents me from sleeping for up to 48 hours and the pain worsens the more sleeplessly tired I become. Although during days where intensity is higher I am in an extreme amount of pain where it feels as if my brain is imploding, the word "pain" often isn't an accurate representation of what I am experiencing, as a lot of the time I am experiencing more of a "discomfort" due to very abnormal sensations occurring throughout my head and face. Some months I have had to see a psychologist because I feel as if I am literally going insane because of these abnormal sensations because they aquire 100% of my conscious attention where I am unable to think straight and even stringing sentences together becomes an impossible task. The primary reason I have taken so long to contact you is largely to do with my mental state due to these headaches; where staring at a computer screen and constructing coherent sentences seems like an impossible task because it is so hard to concentrate on anything other than the pain/sensations. Unfortunately words don't seem to suffice when trying to explain these sensations, but describing them as magnetic pulls in different directions all over my face is probably the most fitting description I can give. I feel as if there are thing ropes tied extremely tightly all around my head and face and they are being pulled in different directions (often moving around my face as if someone is playing tug of war with these ropes). No treatment has offered any kind of help, where distraction seems to be the best practice. Admittedly, suicide has crossed my mind several times since the onset of these migraines, although I have not yet got to a point where I have "seriously" considered it. The pain is bearable to some degree, where the biggest difficulty is more that these sensations are constant, every second of every day, and even conversation with other people is so challenging because this pain takes up so much of my conscious attention. I have become very uncoordinated with my facial expressions, especially on the right hand side of my face which constantly feels droopy (as opposed to the left side which constantly feels tight). I am developing all kinds of psychological disorders according to my psychologist because of my inability to interact with people and because I have no choice but to lay alone and silent in a dark room for most of my days now. I easily become very irritable and often forget what I'm doing on a moment-by-moment basis because my thought become so scattered and disjointed. All of my relationships have fallen apart. I lost my girlfriend and my entire social life because of these migraines. I have had to drop out of university because of these and I haven't been able to work for over a year now. I can't even do the bare minimum requirements to receive allowance from the government. To be blunt, I feel like I'm holding on by a thread where every day is becoming more and more of a struggle.
We have been to see general practitioner, neurologists (mri and cat scans done and came back clear), chiropractor, physiotherapist, watson headache specialist and nothing has significantly helped.
No doctor has yet to give him a diagnosis, no name has been put to his condition. They revolve around calling it "migraine", "headache", "tension headache" and other various names but none with certainty. To be entirely honest, doctors have shown very little empathy and have been very quick to palm him off to specialists.
At one stage he was referred by a GP to a neurologist, the neurologist referred him to a pain specialist, the pain specialist referred him to an ear nose and throat specialist (suspected contact point headache) and the ENT referred him back to a neurologist. All of these specialists charging $200+ for an appointment where it ultimately just led him back to a neurologist that he started at with ZERO prescription or recommendation, just over $1000 to be sent back to the original person. It almost seems like a scam circle.
Anyway, he got convinced at one stage (a bit of blind hope I guess) that it was a contact point headache and had a septoplasty to remove a contact point that was found in his nose. This was 3 weeks ago and has shown no improvement at all.
The chiropractor said his C1 and C2 were out badly, but after months of intensive treatment and another $5000, the chiropractor said the treatment wasn't working, and the exercises and stretches he was performing weren't working and surgery would be the only option.
My brothers posture has looked like this his whole life:
IMAGE REMOVED BECAUSE MY POST COUNT IS TOO LOW - IMAGINE A VERY HUNCHED OVER NECK/BACK
Many people have mentioned it to him throughout his life, it is noticeably bad.
At this point I'm thinking it is most likely a Cervicogenic Headache, as it relates to his bad posture and sounds like similar symptoms (especially considering this type of headache can cause tension headaches which would explain the "band" feeling he is getting around his head).
My brother also prefers sleeping on the floor for some reason since he had this headache. At his worst times he sleeps on the floor and for some reason won't take any suggestion to sleep on his bed.
Our next step was to send him to the South African headache clinic by Dr Elliot Shevel. My brother was getting really excited about this and after watching many youtube videos he was again convinced this would fix it. After doing research today, I alerted my family of some posts where this surgery went horribly wrong, and the suspicious posts of success stories seemingly coming from his son. We have now decided to cancel that and pursue other avenues before trying what seems to be a bit of a scam and a huge amount of money.
So here I am, typing this forum message with my brother curled up on the floor behind me in a state of total despair and hopelessness. I don't know what to do, but I'm going to start here.
Hopefully we can find some kind of relief and one day someone will read this post and won't suffer for as long as my brother, my family or I have. To think that my brother is in so much pain he is contemplating suicide makes me sick to my stomach and sucks the life out of me in an instant making me question my own existence to the very core.
Any suggestions of treatment based on this story and symptoms would be a blessing.
Thanks everyone and I wish you all the best and just hope you have the strength to continue to find relief for yourselves or your loved ones.
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Brother is in PERMANENT headache pain - HELP (Read 5091 times)
