Daily Persistent Chronic Headache (8yrs)

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SoulweaveR
New Member


Date Joined Oct 2011
Total Posts : 2
   Posted 10/16/2011 5:19 AM (GMT -7)   
Hi,
 
Almost 8 years ago I got a migraine, it was the first migraine I had ever had, and it was quite bad, blurry vision, vomitting, weak to walk, all the typical signs of a migraine.
 
Ever since that day I have had a haedache every single day. I wake with it, and go to sleep with it, it has been with me everyday since.
 
Over the years I have tried so many drugs, seen 3 different neurologists, had CT scans, had MRI, full body xray, been hospitalized for 9 days.
The best I have ever reached is stopping the frequency I get migraines.
 
Basically there is two sides to the pain, just a general headache (the persistant part) which means the only way I can function day to day tasks is to use Endep and Nurofen plus. I have reached about 20 tablets a day which seems to be enough to allow me to work and function. I get regular blood test to check organs function and prevent the NP hurting my body any further.
 
Then there is the Migraine part. Pain starts 99% of the time right behind the left eye socket and from there is gets worse until I start to vomit and get all the migraine. First signs are the pain in the left eye socket which then makes vision go blurry.
 
Reason I am wriitng here today is to see if there is any other ideas out there that can help me to manage, and even get rid of it. (highly unlikely I know)
 
Things I have tried medicine based.
 
Ct Scan
MRI scan
Fully body X - Ray
Endep
Santimigraine (sp?)
Lyrica
Topamax
 
There is a few more, but it escapes me now.
 
The hospital result ended with the Neurologist throwing his hands in the air and saying he had no idea and sent me home with out any help. I was on a cocktail of drugs through IV and one of them had a side effect of insomnia which I was given a drug to help me sleep while in hospital, when he discharged me I was dizzy and could only walk a few metres and I was also awake for 92 hours straight.
I ended with writing a complaint about this so called doctor.
 
I have dried different diets, only drinking water all sorts of things. NOthing really seems to make a difference.
If I am tired they seem to get worse, which can be hard as I have a child with Servere Cerebral Palsy and some days are bad for him, which in turns effects me, but hey that is life.
 
I was wondering if any one had any ideas at all to help?
I was also if anyone had and ideas how to deal with chronic pain as it does effect the way I walk to people. On bad days I tend to snap at people, something I don't mean too, I find it really hard, it's just the pain that does it.
 
SO I am open to any suggestions, doctors are at a loss, and I need ideas to put to them.
 
I seem to get a tolorance to drugs as well, then they stop working so well, just adds to the issue.
 
I don't drink tea or coffee (never had) dont's do illegal drugs (just prescribed drugs) don't drink any alchohol at all either. The worst thing I eat/drink is probably some coke. I am currently on a calorie restricted diet, so anyhting I eat I count so I don't have anything in excess.
 
 
SO that is my story, after 8yrs of this I need help, somedays you feel like just giving up on the world, bu tI have a family and that isn't an option.
 
Please help me
Regards
Luke  

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 10/21/2011 11:22 AM (GMT -7)   
Hi Luke,

Welcome to Healing Well. I am so sorry that you have been suffering so much and am very angry that any self-respecting Neuro would wash their hands of you grrrrr!!!!

I would strongly urge you to find a Neurologist who is a Headache Specialist as soon as you possibly can!! Even if you have to travel some distance to see them a Headache Specialist (HS) knows more about headache of any sort than anyone else!!!

I am concerned that part of your problem could be the amount of pain killers you are taking - yes I know you are taking them because you are desperate (I did for years!!!) but taking them too frequently can create headache!!!! Some people refer to them as rebound headaches and these can be more persistent and difficult to get rid of and in the end you don't know which is rebound and which is the original headache!!!

I am talking from bitter experience here!! Just to cover all bases, is the pain you get of an attack just a very much stronger version of the pain you have all the time??

Do you get any other symptoms during an attack such as a droopy puffy eye, blocked nose on the affected side, red eye, facial sweating or anything else???

Sorry about all the questions but your answers could help me point you in the right direction. But please note that I am not a doctor.

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

SoulweaveR
New Member


Date Joined Oct 2011
Total Posts : 2
   Posted 10/21/2011 3:30 PM (GMT -7)   
Ann,

I know about rebound headache, and I know that it is probably part of the problem. Issue is if I ween down and get off pain killers then the pain gets so bad that I need something to help me again. Which just makes a vicious circle.

Basically the everyday pain is mainly in the temple area of the head. I can't do anything like running, or riding a bike as this just makes that pain get worse.

When the migraine starts the pain usually starts in and around the left eye socket. As the pain progresses it spreads out from that position, and eventually the right eye socket starts to ache as well.

I think because the pain starts in and around the eye socket I lose my vision when the migraine gets worse.
I know that my neck is very tender and sore. I have seen people to help with that, but if anyone touches my neck, or even if I turn my neck in an awkward way, then I can guarantee by the next day I will have a migraine.

The sports physio was pushing on the neck, and it really hurt, so he holds his finger there until the pain drops off. This wasn't treating the issue, it was just numbing nerve endings so that that I could tolerate it more. As I kept getting ill the next day I just stopped going.

You mentioned sinus etc... I have found that at times I almost feel like I have flu like symptoms. This is usually when the headaches are bad, or when I try to treat the migraine with pain killers and not go to bed to sleep it off.

I haven't really noticed any other symptoms associated with it. Except I get really lethargic, if allowed I would sleep 18hrs a day.

I hope this helps you help me, as I write this my pain would be 7 out of 10, and I am having trouble seeing. With pain my eyes seem to water more.

Memory and the slurring of words also happens when the pain is worse.

I know that you are not a doctor, but any suggestions is more then welcomed, I am sick of this pian, and anything, no matter how small that may help is priceless information to me.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 10/22/2011 8:57 AM (GMT -7)   
Hi Luke,

It certainly sounds like there is migraine biology there. I really do think it is very important that you see a Neurologist who is a Headache Specialist as soon as you possibly can. You mentioned your eyes water, does this happen when the pain gets very bad? Or, does this happen randomly??

The HS should support you to get off the painkillers and find some other source of relief for you. I can totally sympathise here as it used to distress me when people went on about rebounds and that I had to stop the painkillers - I wanted to yell at them telling them (as they seemed to be deaf!!!) that it was because of the awful pain that I had in the first place that I took them - I was desperate!!!!

To put this into perspective, a HS will suggest that in any one week only two doses of painkillers should be taken to relieve migraine, as this prevents rebounds, but we have to live the rest of the time!!! So I think a HS needs to sort out a preventative that can work for you, and maybe some nerve blocks. GONB's (Greater Occipital Nerve Blocks) can be very effective in giving a sufferer a pain break for a few weeks, and can in some cases last longer. They can only be used once every three months.

The trouble is there are many preventatives out there and each of us has a different response, so what works for one does not work for another, so it does mean keep trying everything that is suggested by your Doc until you find something that works for you.

A good Neuro who is a Headache Specialist (HS) will not stop until he finds something to help you!!! Let me know how you get on.

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn
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