headpain

• By joyceg98
• Posted May 14, 2008 at 11:58 am

HI, Lesley. It sounds like you should keep a log -- write down every time that you get a headache or any of these pains. Put down what time of day, what you were doing, what you ate, where the pain is, what the pain feels like (burning, aching, stabbing, etc.), and on a scale from 1 to 10, with 10 being the worst pain ever, how bad is the pain?

At the same time, you should call and make an appointment to see the neurologist or neurosurgeon you consulted with previously, and be sure to tell them you are having headaches.

That way, by the time your appointment comes around you will have a book of data to show to the doctor that will hopefully help to clarify the source of the problem.

Best wishes,
Joyce

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• By batley
• Posted May 14, 2008 at 4:00 pm

thankyou for your advice joyce , i have been keepin a dairy for about 21 days now , and puttin a lvl on them on how bad they are, i forgot to mension that my eating has gone of as well , and hicups at times , i cant seem to face food for some reason latley , ive just had my scan so i have to give them time to look at results , the pain in my head is worse in mornin as soon as i open my eyes , it bangs in my head like someone has just hit me , then threw day its just there an ack really from the back of head goin up in middle , this is why i cant do my 24 hr water test cause they want me to stop pain killers and i cant cause of my head, but it does remind me of when i had a pheo ,im tryin to think maybe its not vhl and just mygrines ive come to suffer , ive come to deal with my back pain now as i have botox injections in spine now so thats a bit better

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• By gale
• Posted May 14, 2008 at 8:42 pm

A couple of things I would like to mention.

First and foremost, see your doctor. You want to hear more from the doctor other than no change. Have him interpret the report. What scan was this recent scan compared to....6 months, a year, etc...

If you hear no change from the dr. and the scan was compared to a scan from 6 months ago, ask if they can go back to at least a year if not further. Ask about swelling. Have the doctor go over your report with you. Look at the actual report with him. It is your body. You need to know what is going on even if the doctor doesn't. You feel the pain. I go over whatever I need to with my doctor. He sits down while I stand next to him and look at whatever report he is looking at. We talk about it and others things when appropriate.

I am hoping my doctor makes it to the Orlando conference.

Be sure to have pheo testing as well.

Okay, having said the above. I want to share what I have experienced in my life. Others can and may experience a similar situation.

Granted we can all be under stress, some more than others. It also matters how your body deals with the stress...if may even be a habit and stress has nothing to do with it. I experienced head pain all the time. Sometimes it's worse than other times, so I can relate to the head pain. Never in my wildest dreams would I have thought I clench my teeth at night, but I just found that to be the case over the last few years. I had my jaw checked by a specialist having to do with the mouth. It's above a dentist. I don't remember what they call them. It's enough to remember ophthalmology, neurology, nephrology, etc...I now use stints (mouth brace) in my mouth while I sleep. My head pain has decreased. If I don't use the stints one night, I can feel the difference. Never, never would I have thought I clench my teeth.

Be well and get the answers you desire.

Gale

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• By batley
• Posted May 15, 2008 at 10:26 am

thankyou very much for your reply , ive got the nuro on 10th june to talk about results , but what you said i never thought of doing that , i normally just sit there and just take what hes says ,i never really thought it could be comming from my gaw , i must admit i am worried about going hosiptal getting results, if its not from brain then yes good news but i need answers to why im so bad , where the pheo is concerned in germany i had one removed and they left other one for england to deal with , but all scans paper work got lost and england give me a mri and said nothink there , now in germany i had a ct and mri and ultra sound and they found it there every time small but there, every water test ive had has come back in conclusive because of my pain killers they said , im going to get all my questions really this time and insist i get answers befor i leave the hosiptal now , as for stress i do live very stressed im on my own dealing with 2 of my kids with vhl , had a very bad marrage breck up over vhl and still fighting on devorce now and daughter who is very angery at no scans to put her mind at rest, so of course i take it on board , still sa about losing my mum and sister, and the rest of family turnred there back cause they cant deal with vhl, so again being punished for it , the only one i have is one sister who takes on board all my sadness, but she lives miles away from me , my daughter hates it cause i use to be ative with her in the horses now im down to nothink , , what a mess , thanks for your advice best wishes to you

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• By Sheilin
• Posted May 17, 2008 at 2:27 am

Hi Lesley
Having read your journal and the replies from Joyce and Gale, you cannot go wrong with their suggestions. Their experiences makes them to stand out and I do have a lot of respect for these two wonderful ladies. Although I do not suffer from VHL, they guided me and advised me in order to help me to help my cousin whom suffers from VHL. My suggestion is that you do follow their suggestions. I know it will be of great help to help you and your kids. It is very sad that peole can avoid you because of your illness, but they do not realise that one day they might need the help of others. Just know that you are not alone and that there are others whom think about you and pray for you.

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