Does anyone know alternative treatments to control the raised CSF levels?  I am on Acetezolamide only as I won't take anything else and even then no more then I can absolutely minimally get away with. I have tried to research alternatives but keep hitting brick walls. I've eliminated most chemicals and almost all processed foods but it doesn't seem to have too much affect at that. Any suggestions from anyone who's had the condition or treated it would be greatly appreciated.

Hi

I have a feeling that there is no magic pill, alternative or otherwise, that will treat this condition. In your research did you come across the website: www.ihrfoundation.org ? It is the best I have found with information on this condition. I do not have it myself but researched it a lot as I think that a friend may suffer from the condition but is having a great deal of difficulty in getting the Docs to take him seriously.

There are many symptoms that may be present and if neck stiffness is one that you suffer from then massage and relaxation may help as they do my friend. I also think that it may be worth while seeking out a really good acupuncturist as this maybe able to help the pain. Make sure they have a reputable qualification as in the wrong hands things could get worse. Possibly a craniosacral therapist may be able to help. They say that they can feel the flow of the CSF and therefore may be able to influence it. Worth a try?

I wish you well in your search. It is a dreadful and little known or understood condition that I would not wish on my worst enemy.

Gill

Hi, the cranial work sounds good. I've got two more suggestions:

EFT (www.emofree.com). Find a practitioner near you or phone work could do it probably just as easily. Some simply amazing things have happened doing this.

BodyTalk (www.bodytalksystem.com - practitioner, country). Let your body tell you what's going on

Work on the premise that if it came - it can go.... Good luck

 

Find a good homeopath. Homeopathic treatments are based on the principle that like cures like. There are literally thousands of remedies available, and based on your descriptions and history and answers to questions, a remedy will be chosen that will certainly provide some relief and even possibly healing.

 

Hi,

I just wanted to strongly suggest finding a cranial osteopath. My son is undergoing treatment as he was a ventouse delivery and there was pressure where there shouldn't have been pressure - if you get my meaning.

We have found an excellent cranial osteopath. I can give you details, but he is based in Surrey/Middlesex. I don't know if that's any good for you.

I have been amazed at the results in my son.

 I hope this is of help to you.

This is just a suggestion. It won't hurt you and may have some beneficial effects. Try taking a supplement of boswellic acids from Boswellia serrata. It is currently in a clinical trial for brain cancer patients that have issues with inflammation and pain.

 You can probably get some on ebay.

 Let us know what you do and if it works for you.

Watch out for the full moon. Do your symptoms get worse? My intercranial pressure goes up when the moon is waxing and - if it is a bad attack- I take ONE Belladonna 200c (Homoeopathic) which usually helps. Also five drops of Utica Urens (nettle) tincture and five drops of Taraxacum (dandelion) every morning, first thing, in water acts as a general tonic and diurectic. I had a sub-arachnoid haemmorrhage ten years ago which left weakened brain tissue which bleeds and swells. The above treatment has helped. Worth trying.