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Question
Posted by: Susan | 2008-11-24

Von Hipple Lindau Syndrome

Good afternoon,
My husband was diagnosed with the abovementioned sydrome during 2007. They also did a scan and saw an aneurism on his brain. We went to a neurologist and he confirmed that it was nothing to worry about but suggested annual checks. During 2008 he became very dizzy and at times got an attack that looks similar to an epileptic attack (this only occured at night) and we returned to the neurologist. He once again confirmed that the aneurism was nothing to worry about. Now we have found that once he took in vinegar his sculp would begin to sweat, his eyes starts burning and that night we can be sure that he would have an attack and just hope and pray that he feels it before it hits him to enable him to still sit up quickly and the attack would pass. After he has had such an attack it takes him 3 days to recover. He is under immense stress at work which could also be a facor. Could you please help us as this has a huge impact on us as a family.
Kind regards

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Our expert says:
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Hi there

There are a few different components to your question:

Von Hippel Lindau syndrome is a rare gentic condition that can be 'handed down'. If you have children have they been checked? Numerous systems of the body can be affected by this condition including the visual, renal, brain, central nervous system and cardiovasular systems.

You mention that your husband had a scan. There are different kinds of scans, some more appropriate than others for this condition. If this is the only investigation he has had I would suggest consulting with a specialist that is well acquainted with VHL syndrome for a more comprehensive 'work up'.

Remember that as time passes new symptoms from different causes can occur and need to be properly investigated to rule out progression of the condition. I would suggest he be fully investigated for the possible causes of the 'epileptic like' symptoms as this is not one of the more typical symptoms of VHL syndrome.

Your husband's stress level will undoubtly be impacting on his general well being (as well as the well being of the whole family) and, quite probably, although indirectly, on the VHL. 'Stress' is a condition that can very often be well managed with the appropriate lifestyle modification interventions including exercise, dietry modification, relaxation techniques, appropriate supplementation and lifestyle coaching.

Suppressing the symptoms of stress with things like high sugar intake, excessive alcohol, high intake of processed and refined foods and smoking, or even anti depressants, of example, will more than likely aggravate his condition significantly.

Unfortunately, there will not be a quick and easy solution to this problem and I can only hightly recommed to you urgently consult with a medically trained health coach to assist with over all management of your husband problem.

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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