General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below.


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Old 03-02-2015, 06:30 PM #51
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Quote:
Originally Posted by Stanleyr View Post
My symptom are Headaches 24/7 and sometimes so bad I'm throwing up.
The left side of my face is pins and needles.My arms and hands go numb and sometimes down my right leg.My neck is real stiff and sore. concentration and memory are gone and can't focus. Ringing in my ears.It feels like someone is pushing me on the back of my head.The whole left side of my head is pins and needles.
Thanks Stanley
Stanley,
Now, I have very similar numbness and weakness down my left side, spreading over the years to the right. I have memory problems, no tinnitus and have other injuries which mix up more symptoms.
The pins and needles in the left side of your head may be caused by the cyst, but sounds exactly like mine - which is caused by my Trigeminal Nerve. I have a knot of arteries tied round it, causing the permanent pins and needles and flare-ups of TN pain. Perhaps, like me, you have something else going on as well.
Try making a list of all your symptoms and their severity to give to your GP and Neuro. That way - for people like us with memory issues - we can get everything covered.
There are a lot of us here who understand pain and frustration, and have family who don't want to listen to our problems. That is what makes it such a special Community.
Are you receiving any treatment for your symptoms? Are you taking care and steps not to slip into Depression?

Dave.
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Old 03-03-2015, 07:46 PM #52
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Originally Posted by Stanleyr View Post
My wife won't listen to me she does not believe me and won't help me with the doctors or research. she tells me to get a job and when i tell her i'm going help a friend with his boat she yells at me. talk about being lost



Stanley,
As Dave mentioned; our families often get tired of us seemingly not keeping up our end. Getting out probably does you good to keep functioning. Is there someone/family that would at least help research/doctors, etc.? It is always good to have someone with you. Hopefully, your wife will come around. We;re here for whatever support we can give.

Gerry
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Old 03-08-2015, 05:06 AM #53
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Quote:
Originally Posted by Stanleyr View Post
My symptom are Headaches 24/7 and sometimes so bad I'm throwing up.
The left side of my face is pins and needles.My arms and hands go numb and sometimes down my right leg.My neck is real stiff and sore. concentration and memory are gone and can't focus. Ringing in my ears.It feels like someone is pushing me on the back of my head.The whole left side of my head is pins and needles.
Thanks Stanley
Hey Stanley,
I too have a cyst, mine's in the subarachnoid area of my brain and causes allsorts of "Fun". It's caused hydrocephalus (water on the brain) so the ns has placed a shunt, which fractured, so they inserted another. The valve was not keeping pressure, so the operated again to fix that. Originally my first NS said just leave it. 2 weeks later I'm driving down the road and my eyes went black, couldn't see a thing. I returned to the NS a week later and my sight had returned, but I was not happy. I informed the NS how '****** off' I was and he agreed that surgery was required. After the surgery my sight was fine, but the headaches were beyond anything pain wise I'd ever had. The NS just said it was post surgery pain. Normal. I got 2nd opinions but no one seemed all that concerned. My wife could see things weren't good, but none of the dr's wanted to know. I was put on all sorts of medications, no thing helped. So I pushed myself to get going and do things, then one day I collapsed at work, a co worker called an ambulance and I was shot off to hospital. The emergency doctors were asking me why I hadn't followed up, which I had, and I told them 'cos there's nothing wrong according to the NS' turns out there was something wrong and me pushing myself to get going had actually done more harm than good. Now it seems I may have done myself some permanent harm. I have tingles down my right side, visual auras a pain that I explain as someone shooting a bolt from the right back of my head out thru my eyeball, my right eye droops and eventually closes up. My limbs shake. So now I'm having botox injections to try and relieve the tension in my neck, back, shoulders and face to relieve the pressure I feel within my head. I seem to be going around and around in circles and all because no one was listening.
You are the person going through this, you are the one feeling this. If you think there is something wrong, then you are the only one who can manage it in the best way for you. In my case I have a VERY understanding and supportive wife, but I know it can be very wearing on her too. So I try to keep the stress levels to a minimum. I try not to show my pain, although often she can see through my masquerade, but I must say 'It ain't easy' and anybody who tells you it is, has never been there. I had a nurse in hospital recently ask me to give my pain a rating out of 10, I told her 15. 'Ohh it can't be that bad' she said, I told her to lay on the floor and I'd kick her in the side of the head 'there's no need to be so offensive' she stated 'Then stop making stupid f$%^&in statements' I told her. Pain is very individual, I have a friend who told me the worst pain ever is a toothache. Being that that was the worst ever pain he has experienced, then that was as far as his 'measure' of pain could go. For me, give me a toothache any day over a headache. Trying to explain your exact pain to someone else is impossible. And we being told by the medical profession "we understand pain" does not help. Understanding and managing are two different things.
Stanley, you have to manage the best way you know how. Others may pass judgement and maybe you could look into 'alternative methods' you never know, something else may assist. Exhaust all other avenues you can, at least people will see that you are being as proactive as you possibly can be, and to be honest it's about all you can be. Just remember there are other people (us) going through a similar thing, you are not alone.
Good luck with it all

Merl1n
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Old 03-08-2015, 06:56 PM #54
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Hi Merl1n,
I share your horrendous headaches. Mine are chronic Cluster Headaches I try to describe as having a white-hot railroad spike boring into my brain, from the top behind my left eye. Lasting 45 mins to 3 hours, and with meds still get 8-10 a week now. It's a definite 15 on any pain scale.
Most sufferers are restless and pace, I don't have that option due to my limitations - I lay, desperately trying not to punch through my eye, claw my brain out and smear it over the wall to get relief. Sorry if that's graphic, but that's how it gets.
I am glad you have a team that recognises your cyst causes problems - I'm very sorry you have to deal with those problems, and more.

Dave.
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Old 03-09-2015, 08:17 AM #55
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Originally Posted by EnglishDave View Post
Hi Merl1n,
I share your horrendous headaches. Mine are chronic Cluster Headaches I try to describe as having a white-hot railroad spike boring into my brain, from the top behind my left eye. Lasting 45 mins to 3 hours, and with meds still get 8-10 a week now. It's a definite 15 on any pain scale.
Most sufferers are restless and pace, I don't have that option due to my limitations - I lay, desperately trying not to punch through my eye, claw my brain out and smear it over the wall to get relief. Sorry if that's graphic, but that's how it gets.
I am glad you have a team that recognises your cyst causes problems - I'm very sorry you have to deal with those problems, and more.

Dave.
Hi Dave, Pain is just such fun, NOT. I try not to give my headaches a label. The dr's have told me allsorts from migraine to cluster to stress to hypochondria. And each has its own treatment, depending on the dr's recommendations. Last week I went to see another dr who gave yet another diagnosis for my continuing headaches. They now want me to go see a psychologist, like talking about it is going to relieve the pain. They all have ideas but nobody is treating the cause, they are all treating the symptom, the headache. I have to follow through with their ideas or I'm not following medical advice. I've been on all sorts of meds from painkillers, epilepsy meds, heart meds, psych drugs just to name a few and still they seem to have the idea its psychosomatic, 'cos they've fixed it' if this is fixed then I'm in trouble. So In my view giving my headaches a label, a type, gives me more pills and no answer. I want an answer. I'm sick of guesses, give me an answer. Something I can work with.
But the dr's are always right and we are just patients, they have done years of study, we just know ourselves. We don't have their knowledge, so how would we know 'something ain't right'. So shut up and listen to the dr.
Sorry that's very cynical I know, but that is the reality. Dr knows best. Well, no they don't. After many years of searching I have now found a GP who is investigating further, others have just given up. Too hard.
Merl1n
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Old 03-09-2015, 08:51 AM #56
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Merl1n,
I had these headaches up to 8 attacks a day, every day with no respite for 9 years and did nothing about them because I thought they were just a serious part of my TN.
Then, disillusioned, I was seeing ANOTHER Neuro (here appts are 6 monthly and Registrars only stay in the Post for 6 months - never see the same one twice. New Dr = new meds), and I had an Attack in front of him, showing ALL the classic symptoms of Cluster Headaches. Told him back story and he was genuinely shocked and concerned. He put me on Topiramate, which I've just had to 'up' again, but Attacks have been cut by 80%. He even drew up a list of future meds for when the Topiramate stops working, or the side-effects get too bad.
Of course, at my next appt, he was gone. I gave up on Neuros after that, but have to go back at the end of this month to get brain/neck MRI evaluated, primarily for the lesion in the occipital area of my brain which is causing double vision. Thankfully, I get to see the Big Man this time - already sorted with the most important person - his secretary.
I am of the type who like 'labels' on things. I like structure. Even though nothing can be done, I like the finality, the conclusion, a name brings.

Dave.
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Old 03-14-2015, 08:19 AM #57
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Dave,
the reason I don't like labels is because I've been given so many false diagnosis' and I once went to see a NS who very firmly told me that one such diagnosis was WRONG, and how dare I say it as correct. When I told the NS that it was from another Neuro was told "...well, neither you nor he can read an MRI" as if I'd made my own diagnosis. Sorry to say it but there is NOTHING final about ANY diagnosis I've had. They are all an individual dr's opinion. And personally on more than one occasion I've had one dr make 3 different diagnosis for the same ailment
I see a GP, a NS, a Neurologist and an ophthalmologist. They all have their own ideas and labels and each thinks the others opinions are wrong. Conclusion or confusion?
Is this a bit confusing for you? It sure as hell is for me. So now they want me to see a psychologist, to give me another label. And around we go again.
Sorry, nothing final in a label from my experience.

Merl1n
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Old 09-18-2015, 12:12 PM #58
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Default I'm with you Dave.

"I am of the type who like 'labels' on things. I like structure. Even though nothing can be done, I like the finality, the conclusion, a name brings."

Dave.[/QUOTE]

I feel your pain Dave. I do not think normally. No matter how hard I try. The many bad diagnoses that I have gotten are ones that should be cured with medication but guess what? Meds don't work. So I have ended up with the label of simply being crazy while I refuse to give up and absorb that label and stop doing all I can to be a productive person. But I am to the point that filing for disability is my only option for feeling better because then, I wouldn't have a reason to keep trying my hardest only to fail every single time because my view of the world is so distorted by the "asymptomatic" cyst that rests on the part of my brain responsible for interpreting what I see. I hope they can remove mine and I will be normal for the first time in my life but even if they can't or wont, it would be a blessing for someone to tell me that the way that I feel isn't my fault. No one would ever feel that way that I do on purpose.
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Old 09-30-2015, 07:14 AM #59
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Default Arachnoid Cyst with a TBI

Stanleyr It's been sometime since my last post. life has been hell, and try this with a TBI and you have a real can of worms. i'm still so lost don't which way to go. My head hurts 24/7 ,heavy ring in my ear pins and needles on the left side of my face ,anger I can't control ,throbbing in my head 24/7 .
LOST IN MY OWN HEAD
STANLEYR
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Old 09-30-2015, 10:47 AM #60
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Originally Posted by Stanleyr View Post
Stanleyr It's been sometime since my last post. life has been hell, and try this with a TBI and you have a real can of worms. i'm still so lost don't which way to go. My head hurts 24/7 ,heavy ring in my ear pins and needles on the left side of my face ,anger I can't control ,throbbing in my head 24/7 .
LOST IN MY OWN HEAD
STANLEYR
While my cyst is no where near that large and I do not suffer from debilitating head pain, I very much know where you are coming from. I was knocked out from behind two months ago and the after effects of the concussion have really thrown me for a loop on top of the anxiety produced by the mass on my right temporal lobe. Try this website https://brokenbrilliant.wordpress.co...-mentally-ill/ . It really helped me to understand that the anger and frustration that I deal with is very real and simply being aware of it helps me to manage.

Also check out this article http://www.jneurodevdisorders.com/content/5/1/21 . I am currently searching for information that can persuade my doctors to cut this thing out of my head. I hope this helps brother. If there is anything that you would like me to look into or study to provide you with the information that you would need to give your doctor, let me know and I will do the best that I can. Good luck and I hope that your tomorrow is better than your today.
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