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| hi I cant help with the pregnancy thing, however if you post msg on these boards you'll find heaps of answers http://www.iihsupport.org/index.ph p http://groups.msn.com/pseudotumorcerebri/yourwebpa ge13.msn w http://www.ihrfoundation.or g/ Good Luck |
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| Hi All, I was also diagnosed with BIH in May this year - i had severe headaches (i never use to get headaches) so after 2 weeks i finally took myself to the GP who gave me some sinus tablets and casually told me when i hav time to go and get my eyes checked (as i wear glasses too) luckily i went 2 days later, and i was rushed to emergency with a suspected bleed on the brain or an anursym - This is the most scariest thing to be told when im 25 with a 9 month old little boy and with the most fantastic and supportive husband of 2 yrs. After 2 weeks in hospital a LP (pressure 30)2x CT scans a MRI and an angiogram, i was diagnosed with BIH and initially put on a prednisolone (??) (as i was breastfeeding my son at the time) i was given a month to wean then i would go onto Diamox. I was having fortnightly visual field tests and now there every 2 months, I went back and seen my neurologist yesty for another LP and my pressure was a disappointing 34+, we are wanting to start trying for another baby so i was hoping to be given the good news that i could wean of diamox. My Neuro said that although Diamox isnt suggested while pregnant she does have patients who are onit and pregnant (or have been) although with most drugs while pregnant there are risks of miscarry or abnormalites. My question is- Is there anyone out there thats been on Diamox and pregnant? My neuro said that once im pregnant(if we chose that path right now) that to call her and she will talk to us about other drugs such as predisolone that doesnt affect the feotus. Im hoping that maybe i could remain drug free and fortnightly LP while pregnant. |
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| You can find an excellent (world wide, online) support group at www.pseudotumorcerebri.co m--just click the link on the upper left for the support board. I know there is at least one active member fairly close to you there. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hey Rhiannon, I was diagnosed about 5 weeks ago. I went from being diagnosed casually as an outpatient to spending two weeks in hospital feeling very sick. I deal with a neurology team and an ophthalmic specialist. You definitely need to see specialists when it comes to this, I can only suggest Sydney, Melbourne or Adelaide (depending on where you feel like driving to) are your best bet, but Dubbo may have VMO (visiting doctors who know about it). Make sure they do a MRI before/after any LP’s and that you are happy with your doctors because every case of this is different. I’m not much help with which doctors as I’m from QLD. MA~ |
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| Hi my name is Rhianon and I was diagnosed with BIH 2 days ago!! I live in Broken Hill but have decided to go else where for my treatments as the doctors here dont have a clue about what I have!! I was wondering do u have nice specialists? If so who are they?? Thanks for your help |
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| I have just found out that I have this two days ago after visual problems for a week in my right eye. I have had an MRI and found out that I have narrowing in my transverse sinus. I am interested in hearing what everyone experiences are. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Here is a link for an Aussie group .. im a member, tho it has been very quiet of late.... post a message you WILL get a reply. I have had BIH since 99 .. seems to be under control now thanx to a VP and LP shunt. Drop me a line if want, feel free to ask questions I will help if I can. Sally :O) http://health.groups.yahoo.com/group/Australian_PT C-BIH_Network/ |
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| Hi! Sorry I'm not aware of any support groups...I've been searching the web like mad for information since I was diagnosed with BIH in Aug 06, I was found to have a 'narrowing' of the straight sinus (which I've had no treatment for...stents have been discussed). On average I've had 1-2 LP's per month since..and been on some meds. I'm never without a headache, it varies between high & low pressure ones. I found your post today when I was trying to find out more info on VP shunts...I got a phonecall today informing me I will be having the a VP shunt inserted next week...so I'm back to the PC to get as much info as possible. Most of the information I've found is on Hydrocephalus...but the symptoms & treatment sound very similar to BIH, so it has helped a little. I was hoping that there was some sort of BIH Foundation that could be a one stop shop, but I haven't found one! I can't believe you've managed so long with this condition!! My back is a wreck just after 6 months! I'm not sure if my post will help at all...but finding your post let me know that I'm not the only person who is finding it difficult to find information/support. |
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| Hi, i know you post was a while ago now but would likee to know how you got on with your BIH. I was diagnosed 5 years ago but wasnt until 2 years ago that my headaches were persistant.. i have now had a constant headach for 2 years and 2 months. Have had so mant LP's that my back is ruind and have had stents placed into my transverse sinus in my brain to open them to see if that drains the fluid.. NOTHING... No Change. I am now booked to have a VP shunt inserted in 2 weeks. I live a few hours from sydney but like you would like some sort of support group. Sorry.. also what Dr's are you seeing. regards Kel |
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| Thanks for your reply. Have you tried going to a chiropractor? I hope you can find out what's causing your headaches. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi, I am sorry to here of your problem it sounds very unpleasant and I am unable yo assist you with any support group in Sydney. I do however suffer from an ailment which causes me headaches daily and it has been this way now for 5 months and driving me nuts. My doctor is monitoring the situation and suggested it was from arthritis in my neck however, another doctor I visited on another issue has suggested it must be from a damaged nerve to cause the type of issues I am having. He didn't diagnose neuralgia, but to me it seems like it is. Any ideas? |
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| I was diagnosed (following a lumbar puncture) with BIH about 3 years ago after suffering from pressure headaches causing loss of vision (when laughing, sneezing etc.) I am on medication for this but still have pressure headaches and I was wondering if there are any support groups for people with this problem in Sydney. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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