Hi Monica, and welcome!  I'm sorry Nels has been diagnosed with this, is Nels your child or spouse?  A little more information might help me offer some guidance, or point you in the right direction, if you are comfortable doing so.  It is a wearing disease, and it is so different for each person that has it.

Please, let us know how we can help.

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Hello to everyone.
I am Monica and a fairly recently retired GP. My Nels has just been diagnosed with the condition and as I have very little experience of BIH other than theory, I was sent the invite to join you all in here - - thanks Martin.

I do not expect I will have much to add but I do intend to glean as much info from the group as I am able. Also if I can add anything, I will.

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Hi my name is Beth. I was diagnosed last July. My symptoms came on very quickly. Started a bad headache followed about a week later with enlarged blind spots. Was diagnosed with and treated for migraine. I saw my PCP and went to the ER several times. I was treated like drug seeker by the ER even though I had not been there since I broke my ankle as a child. After about three weeks with a severe headache I began to vomit. Which is also a symptom of a migraine. I got to the point that I could work, sleep or eat. My PCP had no idea what was wrong with me. I am a nurse so I searched for the answer in medical books and on the internet. I found out about PTC on a website. I tried to tell the ER doctor that is what I had but he told me the symptoms did not fit. I finally made a appointment with my eye doctor who saw the papilledema and sent me to a larger hsopital in a different town. I failed to mention that during I had 2 head CT's and a head and neck MRI that were all negative during the month before I was diagnosed. After the dicovery of my papilledema the ER did a LP and my pressure was >55. I was given a RX for Diamox a sent home without even seeing a neurologist. The pain and vomiting were back within a few hours. My PCP set me up with a Neuro-opthamologist in Nashville at Vanderbilt. By this time I was considered legally blind and was unable to drive. As my papilledema decreases my vision improved. Then by November the Diamox was not working anymore and I had to get a VP shunt. I recovered well. I had to have my shunt adjusted once due to low pressure headaches. Now a little over a year since my shunt was placed I think it is malfunctioning. I have been having severe dizzy spells and the pulsating noise in my ears. I know these are common symptoms of PTC but I didn't have them the first time. I have been having headaches but not a severe as before.

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Hi April, and welcome to the site.  It sounds like you are well researched in IH.  Your doctors are not correct about the shunts, because many people with IH do end up having them, but usually only if meds fail to work/control the pressure and vision is at risk.  Each doctor is different.  Shunts are a huge step, and there are no gaurantees that they will work.  I know some that have had luck with them, and many that have had numerous issues, such as clogging, the tubing getting tangled in the stomach etc, and many have to have revisions.  There are 2 types of shuts, a VP and an LP.  I don't know too much about them, but you can google that information.  I'm not shunted, and manage my IH with 1000 mg of Diamox, and 40 mg of Lasix.  If vision is at risk, there is also a procedure called Optic Nerve Sheath Decompression, which is where they make slits in the optic nerve sheaths to relieve the pressure on the eyes.  Often, this has been enough to save a person's vision and then manage with meds.

This site isn't very active, but if you do have questions, please go ahead and post them, and Rain and I will do what we can to assist you.

Again, welcome!

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Hi, I am new to the group but not PTC. I have had it for around 14 years. I was diagnosed after having headache for around 2 years. I think I went into remission for a few years. (no meds or anything) I was not told from the beginning that this is a lifetime thing. I really wasn't told much, just that this was caused from me being overweight (5 1 tall  160 lbs) and being on birth control pills. I think what they said is "It is a side effect from the birth control pills" Anyway, I have had alot of LP's and the highest reading was 550 or 55 and at that time I wasn't even having headaches! I do not have a shunt. None of my docs over the years have ever said anything to me about one. When I asked my lasted doc he said people with your condition do not have shunts. I said I had read about it and he just acted like I didn't know what I was talking about.  I have Papilledema, right now my eye doc says that my meds are working for my eyes.

I take 1500 mg of diamox a day. I really don't like this but what choice do we have. I have found i like the tab. better than the time release.

I do know that a few things make my head hurt like eating carrots, stress, exercising, the sun shining on my head. Also, I know that when I can't sleep because the headache is worse when I lay down - I know that the pressure is up and also, trying to sleep in a chair or sitting up or reclined is better - that is if you can get any sleep at all.

A little about my self: I m 41 years old, I have been living with my boyfriend for around 15 yrs., I have 2 sons- One is 20 in 18 days, the other is 17 yrs old and has hodgkin's lymphoma, which he has just finished his chemo & radiation and had his 1st followup PET scan to show that there is another spot, he has another one done in 18 days. I have lived in Ohio since 1999, before that I lived in S.C. since the day I was born. I have 2 dogs and 2 fish tanks.

I am looking for a new doc so if you live in the cleveland area and have any sug. please let me  know. I also was wondering if any one has ever tried the Tyramine free diet and if so did they think it works. I am tired of having these headaches and really want to get a shunt too.

Well, sorry this was so long, and thanks for listening.

April

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Hi Gina, and sorry it took so long for a welcome!  It sounds like you have been down some rough roads for awhile.

I'm sorry you are having issues with your shunt, and sadly, many that get them do have issues with them.  I know it takes awhile for the settings to be regulated, and then there are the ones that fail and need to be revised.

Here is a link to another support board that is more active, and there are many there that have shunts, and could offer you some insight. http://www.ihsupport.proboards98.com/

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Hi My Name is Gina and I Live In PA, I was Diagnosed with IH/PTC in 2004, and since then I have had Numerous Amounts of Lp's (highest pressures near 50) I had an Lp Shunt Put in and had to have 3 revisions whithin 2 years, and after, Finding a wonderful Neurosurgeon in Philadelphia, It was reccomended to me that I Have A Vp Shunt Placed, And I did so Last August (2007) And I was Okay for About 6 months or so, still Taking Pain Medication, and Topamax, But, My Nuero-opthamogist said My Papilladima was Improving, so We thought it was a good sighn...and Now I am Starting to Get re-Onset of Symptoms where I am Stumbing, and Having Memmory Loss, And Horrible Dibilitating Headaches, And Major Depression, I am Hoping I am Not having a problem with this vp shunt. I have a wonderfully Supportive Husband, and a 7 year old son, who was concieved through a very long and life threatening issue(very long story)with Fertility drugs(which is the reason why they think I have IH?????) If there is anyone out there from PA I would Love To Talk to You! I wish you all A Pain Free Day! Nice to Meet You!

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Hello to Everyone.

My name is Dani and this is the first time I have been on this website. Ironic really as today was the day that my consultant told me that I can come off of my tablets as I am in remission. I wanted to let you know that there is hope out there. By coming off my tablets this means my new husband and I can now plan for the children that we have so longed for (preganancy is not advised when you have BIH.) My friends son has just this week been diagnosed with BIH and so I thought I would look for a website where he could talk to others about his condition. He is a lovely lad who is going through a rough time and we have been able to discuss shared experiences (The joys of Lumper Punctures, need I say more!!!)

I wish you all well. I hope you get to experience the joy that I do right now.

Dani

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Hi

I am new to this, i am just looking for others with my condition that i can speak to, and understand what i am going through.  I was diagonsed in Sept 2007 and have 3 LP's already with two more booked in over the xmas period.  also i now have detachment in my left eye, so which is causing flashin lights, floaters etc...

my family have been great but dont understand what i'm going through.

i look frwar to hearing from u

jen x

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Not trauma to the head.  The neurologist said he thought my pressure was raised because the lp was traumatic as in they had problems doing it.... it took a few hours and wasnt the most pleasant experience of my life.  Do you think that would cause raised pressure? Didnt make sense to me.  It would definatly cause blood pressure to rise but not csf surely?  If that was case wouldnt any stress cause csf pressure to rise?

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I posted a link to another board where I am an assistant manager, so feel free to join there too.  It is a small number of members, who post almost daily, and I believe some of their shared experiences would really help you through this.  By trauma, do you mean trauma to the head?  If so, yes, I think there can be a link and head trauma can cause IH.  Still, whatever the cause, you need to be taken seriously and treated for it!  We are all in the same boat, we don't look sick, people think " Oh, it is just a headache, take an aspirin", or often think we are being drama queens.  No one can really understand wht this feels like, unless they have it! Here is the link to the other board: http://ihsupport.proboards98.com/index.cgi It never hurts to get the insight of many others, and this group is just wonderful and caring!  [ send green star]

Hi everyone,

Its been a long time since i was on here.  Things not much better on my front.  My Neurologist in St James Hosp now thinks i dont actually have BIH cause i dont have any swelling of optic nerve. When they tried to do a LP they couldnt get needle in but dont think they'll bother trying again.  The pressure was 43 when they did it last but thinks it was high cause the LP was traumatic.  Just wondering if anyone else doesnt have swelling of optic nerve and still diagnosed with BIH?

Niamh

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I was recently diagnosed with BIH. I have my up days and down days.  The most annoying part of the whole thing is that I get stupid looks from people when I try to explain my problems.  I have had an MRI with contrast and a lumbar puncture done. My pressure is 30.  I started the symptoms in January. I was told it was migraine headaches and sent away and then i was put on blood pressure medicine because it was elevated. The blood pressure meds were awful and i didn't feel like that was the real issue. When I am in pain or overly stressed it does make my blood pressure elevate.  So another visit to my primary care landed me in my optometrist's office for an eye exam and off the blood pressure medicine. Where he found that both of my optic nerves are swollen. I was then sent to a neurologist who ordered the tests and placed me on Diamox.  That was another fun experience because the medicine helped with the spots and flashes in my eyes but the side effects are making it hard to deal with. I was taken off the medicine and then placed back on it because the vision flashes and spots and the swooshing in my ears returned.  I told my nurse that i could deal with the side effects if i could go through the day with out seeing spots.  The thought of surgery and shunts worries me greatly.  I have already had some vision damage that they are not sure can be reversed.

I am glad I found this site because now I feel like I am not alone.

Many Thanks

Amy

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Mary I am so sad to hear that your 13 year old daughter has been diagnosed with BIH, it is bad enough at times for us adults but most be awful for a child.  I too have a daughter of 13 (she's a member here on Care2) - if your daughter wants someone her own age to chat to my daughter Melanie would be happy to talk with her.

I found BIH to be a very lonely illness as no one can fully understand what you are going through.  I'm so glad that your daughter is getting help with this, and you too.  If your daughter wants to come on here and see what others are going through and can see that there is hope - I am fully recovered from BIH now, although my Consultant can't be sure that I will remain that way....but I'm positive and hopeful. 

Feel free to contact me Mary.

Hi there Tracey.  You've been through a really tough time.  Sounds horrendous being surrounded by patients with serious brain problems...no wonder your kids weren't allowed in...

I know it seems like the end of the world feeling how you feel right now.  The worst bit (even worse than the headaches really.....) was the memory loss....I felt like I was losing touch with me.  But I want you to know that recovery is possible although it seems the Consultants can't say for sure whether it will ever re-occur.  I'm determined to live life to the full whilst I can.....and if that's for always, then that's great!

Thanks also for your introduction.  Will reply with a phone number, if you ever need to call someone who understands.....I'm here ok?

Take good care. 

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^{hi my name is tracey 3years ago i was diagnosed with diabetes 3 weeks later my dad died aged 58 and 3 weeks after that i went for an eye exam at hospital  and then was transfered to another  hospital in another city  i had mir scan and a cat scan then my first lp which was horrible and they said i had bih  my children were not aloud to see me because a lot of people on the ward had brain problems and there where alot of screaming i thought i was in a mental home  my readings from the lp was 59  then 2 days later had another one which was very high and i was loosing my sight in both eyes the headaches were like my head was ready to burst and even hurt just to go to the loo  i thought i was going mad  then had more lp which were so painful  then after 4 months gave me a shunt. they drilled a hole in my skull and fitted a tube from my side of the head which runs down my side of neck into my stomach my consultant told me that having a shunt fitted was just the beginning but said he had never met such a deserving patient  that needed the shunt  so badly but like he said it was only the beginning as the shunt can get infected or blocked and only lasted anything from 4months to 4 years in which i would then need another one fitted which they would put on the other side of my head..... any way three years on i cannot work because of memory loss ,horrendus headaches  fatigue  and doing the simple things like washing my hair i cannot do with out my husband who has been my rock through all of this  but the worst thing is i am loosing my sight my consultant said he cannot save my sight but i look back on these 3years and think there are a lot of people who are worse off than me and i am lucky i have my husband and 5 kids ages 13,15,16, and 2 18years olds and i have my faith in my god  and i want to thank you for your sight its great to no i am not on my own with this  condition i will right again soon}

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Hi

My name is Mary and my daughter Sophie who is 13 years old developed a really bad head ache 5 weeks ago. I took her to the doctors after 3 days where he said it was just a migraine and gave her medication for this. 3 days later the headaches where getting unbareable for her so i took her to the hospital, where she was diagnosed as having Idiopathic Intercranial Hypertension. in the last 4 weeks she has undergone 5 lumber punches under a GA has had a CT,MRI and MRV scan the pressure of fluid around her brain is above 40. She is also under a neurologist at Great Ormand street and if the medications do not reduce the pressure she will be having to have a shunt put in. I am vey impressed with the hospitals and doctors that are dealing with this and in the last 5 weeks she has had 3 hospital stays and she is still in hospital and has been for the last 2 1/2 weeks. Is there anyone who has had a 13 year old who has had this, and i am looking for reasurance that she will recover as the last 5 weeks have been the most stressful ones of my life. I am also very glad i have found this web site as i have been feeling very alone as i have never ever heard of this condition before.

Regards

Mary (Sophie's mum)

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Firstly I must apologise for not being around very much lately.  If you have read some of my posts here you will probably realise that I have been very lucky and recovered from BIH.  I am know back in work and life is a bit busier to say the least.  Having said that I am not abandoning this group or anyone with BIH; I am always there for you.  If any of you want to talk on the phone at any time then just send me a message with your phone number (and obviously your time zone!) and I will do my best to call you at a mutually convenient time.  I know when I was suffering with BIH just having someone that actually understood what I was going through was such a comfort.

Anyways on with what I wanted to do which was to welcome you both into our group here on Care2.

Kylie well done on doing something positive and creating your own forum - I feel it is essential for anyone with BIH to have the opportunity to talk to others and learn from those who know about this disease most of all, those of us that are diagnosed with it.  I will certainly check out your forum soon.

Bunny I hope you are feeling better now....I know that all these procedures are such a nuisance and cause us to be out of action for a while but hopefully they will prove beneficial to you in the long run.  Keep your chin up honey.

I hope these group will help you both in some way.  Do feel free to post any information etc as we are all here to help and support each other.

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Hi Paula and welcome to the group.

Like you I was diagnosed by my Optician (well he was the one that noticed the problems in my eyes and referred me urgently to the Ear and Eye Hospital in Dublin - used to live there, now in Beds), they really don't get the recognition they deserve. 

I am so sorry that your marriage broke up because of this and that your husband wasn't supportive and understanding.  It's hard enough coping with it in the bad times, you need someone to turn to.  My own relationship went through the mill but we overcame it.

You really do describe how it feels to have BIH very well.  I'm sure we can all relate to it...just not able to express it as elegantly as you.

This group was set up because I was suffering from BIH (had the all clear last November) and wanted somewhere to meet others in the same boat to discuss our experiences and research.

I have to go out in a few minutes but I'll send you a private message a bit later...

Take good care of yourself honey.

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Hello everyone,

 My name is Paula, Im from Devon,  and 36yrs of age.

 I was diagnosed with BIH 10yrs ago. by my optician who has and is very supportive. I found i get more sense from them , then my GP, as they know very little of the disease.I was clear of BIH for 2 yrs but was recently informed it is on the reutrn, awaiting hospital visit now.

Life has been trying at times, My marriage broke up recently and i have found the stresses have aggreviated  the situation ( or so it seems to me). My husband didnt attend the hopsital visits with me once i had been diagnosed, because he didnt see it as anything serious, I would like to stress to partners of those suffering that althou we may at times seem  fine,  we suffer inwardly and do need all the support you can give, the only time my husband really noticed my illness, was if i was irratated easily or my eyes bulged, just a few of the prominate symptons.  A few falls here and there, made me feel stupid, and yes memory loss or forgetfulness, is a dialy occurance.headache - hmmmm not a strong enough word to use, the pain and tightness occurs in the nape of the neck,around the temple, back of the eyes burning/hot scalp. I often find a hot or cold compress relieves it slightly, or just to have  someone pay attention and offer a gentle head massage,good way of getting us off to sleep, as sleepless nights often occur. I dont know if this disease we all share is curable, I often think its here to stay , it just how we cope with  it day to day, and the support of our friends and family pull us through. I have 2 wonderful children, although still fairly young, and some wonderful friends to pull me up when down, and thanx to this wonderful site, (which i didnt know existed untill stubbling onto this morning,) hopefully a few new friends in the making.   

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Thank you for your introduction.  Good to meet you.

I'm so sorry that you're having such a bad time right now.  But I want you to know that it can get better.  I was declared BIH-free by my consultant last November after almost 2 years.  So NEVER give up the fight no matter how low you get...

I completely understand where you are coming from regarding your memory lapses and not remembering what you are saying, and the effect it is having on your relationship with your husband.  My relationship with my partner suffered badly at the time I was going through the same problems...but we survived and came out stronger!  Just talk to your husband as much as you can, involve him in everything that you are going through, invite him to join us here....he will then know that you are not alone and he is not alone.  I really encourage spouses and family to read the posts here, I want to offer them support as much as I want to offer you support.

I've sent you a private network mail also.

Take care and keep positive... 

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Hi there Niamh!  Yes it is a shame that I moved away before we had a chance to get to know each other but I'm not that far away now; just across the Irish Sea!

I truly understand how bad the pain can be day after day.  Do you know after a while I kinda got to accepting that having a headache day in day out was "normal"!  Dreadful when you start thinking like that! 

At my worst time (which was last summer, ie 2005) I too couldn't hold a conversation because I'd forget what I was saying and to be honest it was almost the end of my relationship because my partner gave up being understanding and was just exasperated with me.  It was a very tough time.  Thankfully we've come through all this and are 110% strong but the illness certainly tested us!

I'd strongly recommend your family checking out the internet and sites such as this to help their understanding of how BIH can affect us.

Yes you need to stay positive.  I always believed that I would overcome BIH and I am healthy at present.  You have to help yourself.

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I'm so glad you found your way here.  We are here for mutual support; even though I am currently well I can never forget not only how ill I was (which is nothing compared to what you and others have been through) but how scared and alone I felt at times.  So i'm glad you're here as we all need each other.

Your story is truly horrendous and I'm so sorry that you had to go through what you did.  However hopefully by telling your story you may have saved someone else from making the same mistake.

I understand fully about feeling like an old woman having BIH makes you feel as though you've left your youth behind.

I'll send you an introduction so that we can get to know each other better.  I'm only slightly older than you at 38 and I presume you must live in the Cambs area; I live in Beds.

Take care of yourself please and know that there are people that care.

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THanks Rain for your lovely welcome to the group and I'm so glad that you are in remission. Such a pity that you moved back to UK before i joined group but its great to have someone to understand the irish medical system etc... 

Some days are really hard to cope with.  The pain is constant and am so used to it now it doesn't get me down.  But its the days that you ask someone the same question about 10 times in 10 mins and you can just see by look on their face.  I now find myself not engaging in conversations with family and friends as much for fear of them noticing how bad my memory has got.  Funnily it affects me more conversationally than practically.  I could be speaking to someone on phone and suddenly find myself off the phone...... when i eventually figure out who i was last speaking to i then have to ring them back to make sure i said goodbye and not just hung up cause i cant remember.  Funny thing is i never have just hung up. I have always said my goodbyes (or maybe they just tell me that to spare my feelings).  I love doing crosswords and it now takes me all day to do the easy one.  I force myself to do it anyway to try and keep my brain ticking over.

Thats a bad day..... a good day is remembering names of things. Sad but true!!!!!

But you have to look at the bright side my hope is that its only a temporary blip and that i'll be back to full swing very soon.  I think it would be very funny if it wasnt so inconvieniant.

Would love to hear others similar experiences with memory problems.

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hello my name is diane and i have been diagnosed with bih now for 4 years but this is the first time i have been on this site or any other connected with this illness.

i have been ill now for about 9 years it took me a long while to seek medical attention and  it was my optician who originally set me on the path to diagnosis i then went through the whole lumbar puncture drugs scans doctor after doctor sessions everyone seems to go through and it was very scary not knowing what was wrong at my worse my levels came back 72 the pain was indescribable zooming down the motorway on the way to addenbrooks hospital with my ears eyes and nose bleeding is not something i ever want to do again and the ambulance man didnt seem to happy either lol after being faffed about for a couple of years they put a shunt in me 18 months ago it has helped some for me but the docs were a bit missleading on the results for this i guess i was expecting a cure .

im glad i finally found this site ive been very foolish trying to get on with my life the way it used to b and pretend nothing was wrong with me i have all the symptoms of bih plus a couple more like falling over and dropping things because i lose sensation and control of my legs and arms ,falling over outside when your speech is not to good people think your drunk nobody helps its humiliating its also my own fault for trying to hid my illness but im only 36 now and i felt old and broken it didnt help that the docs kept telling me its an old persons disease like alzeihmers i now know they r wrong,and i think u guys r very right the docs dont know so much in fact we sufferers probably know more lol

i agree the illness is cyclic and there seems to b no rhyme or reason to bad or good days i hope i havent sounded to pity party but its actually a relief to share thanks for listening di xox

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Thank you for your words of wisdom to Sheryl - you are very right that people only tend to post when things are bad for them.

I do want to reiterate that things are good for me!  So everyone have strength and positive thoughs - you can go into remission.  Believe it is possible.

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Welcome to the group Sheryl.

I feel so sorry for your girl.  I have a daughter myself who is 13 in January so I can totally relate to your daughter although thankfully my daughter Melanie doesn't have BIH - must be so much more awful for the kids.

LP's are awful to go through, I'm so glad your daughter didn't suffer any pain with hers.  Her reading was quite high but that doesn't mean it won't go down with the proper treatment; medication and LP's.

Diamox is the medication I was on.  It's very good.  I'm so mad at your doctor for being so pessimistic and telling you that the Diamox probably wouldn't help because your daughter has had BIH for so long!!!  DO NOT LISTEN TO HIM!  It can get better and you must stay strong for your daughters sake.  If you give up on her she will give up on herself and that's when the real trouble kicks off!

I'm glad to read that things did improve for a while.  Please don't be disheartened although I know that's not going to be easy.  From my understanding of BIH it can be cyclic (if I've spelt that right?).  It can go into remission (which mine has at the moment) but it can also come back again at any time.  Frustrating I know.

I'm surprised that they haven't increased the Diamox.  When I started on them I was originally on 240mg x 3 daily and then when I began to feel better I asked to be weaned off them, I've not taken any medication (or had any LPs since January).  Obviously children are medicated differently from adults but I think you should certainly ask if her dosage could be increased or another medication added.  In answer to your question there are definately different medications but I can't recall what at the moment...will post it when I do.  

You say that sometimes she misses her pills.  Can I suggest that you take charge of giving her her pills to eliminate that problem.  There are two reasons that she could be missing her pills.  1 - BIH can make you vague and forgetful (at my worst I couldn't even speak a whole sentence without forgetting what I was saying).  And 2 - she probably doesn't want to take pills as it's a reminder that she has something wrong with her and I'm sure that makes her feel like a freak amongst her friends - kids are so sensitive like that.

She's going to go through a really tough time and you need to be her rock.  She needs to know that you believe her when she says she doesn't feel well and that you will support her with her medication and treatment.  And don't forget lots of love and hugs and kisses because you probably have a very scared daughter.  And talk and think positive!  Before I was properly diagnosed I was told that I could have MS, a Brain Tumour or BIH.  BIH was my choice of the three so I was delighted when that was what I was diagnosed with.  Yeah I know I'm strange but as far as I can see I'd prefer to go blind than be crippled with MS or potentially die from MS or a brain tumour. (I do hope I haven't offended anyone with those remarks because no offence was intended)

A shunt, from my understanding, is pretty much the last resort.  I haven't had a shunt so it's difficult for me to talk about that.  Many here in the group have experienced shunts...I hope that some of them will share their knowledge and experience of them.

All the very best to you and your daughter.  Love and hugs from me to her.

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Welcome to the group Niamh!

I'm glad you found us and that we are helping you.  Unfortunately I've not been online for a few months as I've just moved from Ireland to England.  Shame I moved before I got a chance to get to know you...still only the Irish sea between us and as my partner is a Dubliner I know we'll be back to visit his family.

I myself was diagnosed in Feb 2005 at the Eye and Ear Hospital/Tallaght Hospital. 

Sounds like you had a rough time with your drs getting the right diagnosis.  Surprised they gave you a LP without having the equipment to measure the pressure.  At least you got a proper LP at St James.  43 was pretty high but it's definately not the highest pressure I've heard of! 

At least you're on medication now.  Are you on Diamox?

LP's I personally found to only bring temporary relief although it seems the drs think it to be the miracle cure...I used to wonder why they bothered.  As far as I feel, and this is only my personal opinion, the only good they do is to give a pressure reading so that the drs know how the BIH is progressing.  6 weekly LP's sounds about right - I was having them approx once a month. I'd guess the reason the didn't talk to you about the condition is because they know so little themselves - sad but probably true.

I'm glad your eye sight isn't affected and it really needn't be.  Make sure you take your medication and stick to those awful LP's at least for the time being.  If you look after yourself your eyes will be fine.  You may feel pain in and around your eyes because the fluid in your head is moving around and obviously if the pressure is up it will press upon the optic nerves.  Hope I've explained that ok, if I haven't please shout and I'll try again.

Please don't apologise for rambling (you obviously haven't read some of my posts! lol) feel free to talk freely here with friends that understand what you are going through.

And believe me that there is light at the end of the tunnel.  I'm now in remission and looking to go back to work.

Do feel free to contact me.

Stay well.

Namaste

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Welcome to the group.  I'm glad the group has been able to help you, and thank you so much for your kind comments.

BIH/PTC is so little known about even in the medical profession.  I like you found it hard to find out about BIH as the doctors knew so little about it, hence I did tons of research online.  I felt that I had to open a care2 group with information to try and help others suffering and to educate those who have never heard of the disease.  Please feel free to post any info you find - remember for copyright purposes to post the url from which you found the information.

So glad we are helping.  Hope you are well.

Namaste

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Hi Sheryl,

First of all i want to say how awful for your daughter to be suffering with this at only age 13. I'm 30 and find it hard to cope with it sometimes. I have been dianosed only about a month and i too am on diamox (250mg twice daily).  The major obsticle seems to be docs not having enough knowledge on this illness.  Have you checked out the website on msn..... you'll find website address under links on this site.  I found it to be very informative.  My advice would be to gather as much information yourself on this topic and then when Docs suggest something you'll be able to make an informed decision.  One word of advice though.... people generally only post on to sites when they are having a bit of a tough time of it so just remember that. In other words when they are feeling bit better or feeling well they tend not to need the support.

Best of Luck

Niamh

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Hi.

I am a mom to 2 wonderful kids.  My daughter is almost 13, and my son is 8.  Four years ago my daughter started with headaches we all thought were school stress related.  As time went on the headaches were comnig more frequently.  Her father and I have minor eye issues, so we took her to the optomotrist to see if she just needed glasses.  We were shocked to hear that there was a more serious concern then just a need for glasses.  She went through a cat scan then and they found nothing.  She saw a pediatrician and he found her to be normal.  She went to the Optical clinic run out of the university of Waterloo where they did some pictures and more testing.  After all that, they told me that the swelling in her eyes and her headaches were just something she was going to have to live with.  It was just the way she was.

Two years after that, her headaches were still present, but her eyesight seemed blurry.  I took her back to the optomotrist who saw her before and had her looked at again.  This time, she sent in a referral to an eye specialist in London Ontario.  He examined her and had the same concerns as the optomotrist and referred her to another specialist.  This dr wanted to do a lumbar punch.  Hearing those words panicked me and i was sure i was going to vomit on his shoes.  They promised me she would have no pain, but they needed to measure the pressure to see if she had BIH.  I agreed, and 3 weeks later she was scheduled for the procedure. As they promised, she had no pain.. felt nothing.  The measurement they got said her pressure was 31.  The dr came out to talk to me and told me that he was concerned at this level.  And for how long things had been going on.  He said that she was in a chronic stage and that he was going to try her on some meds (Diamox) but he was not overly hopeful that it would help her, since she'd been this way so long now.

A month after the procedure and on those pills, she made remarkable progress, and they were talking about having her off the meds in a couple months.  We were all so relieved and thrilled that she was responding so well.

Month 2, she saw the optomotrist again and they were happy that she was still progressing.

Month 3 (today) her progress has halted, and in fact she's gone in reverse now.  The nerves in her eyes are again as swollen as they were in the beginning. 

She is going to see that optical specialist again on November 8th.  We are all very worried and concerned.  And we don't know very much about where things might go from here.  I would be so thankful to hear from others who are in this situation.  Any words of wisdom or support, or links to visit or anything would be very much appreciated.  I have read a lot of different sites and articles, and there is so much I still need and want to know.

For instance.  She has only been on Diamox 250 mg so far.  Will they up the dosage or add other medications?  Are there other meds that can aid in regulating the pressure?  She also sometimes misses one dosage of her pills. If she gets 5 days of 2 pills a day, but the other 2 of only one, is that maybe the reason for the decline in her progress?  If someone is in the chronic stage, do they usually end up with needing a shunt?  What are the concerns with a shunt?

I thank any and all responses.  Not having the knowledge is driving us crazy with worry and what ifs. 

Sheryl

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Hi all,

First of all just want to say how gratefull i am to have found this group.  Have just been diagnosed with BIH and knew very little about it.

 Had my first LP back in June in local hosp but they had no way of measuring pressure and they reckoned as i got no relief from LP that i didn't have BIH.  Think my consultant thought i was imagining symptoms as all pain meds not working and he kept insisting it was only a migrane.  Eventually my GP got me a private appointment with a nuerologist and he arranged for me to have an LP in St James Hosp in Dublin.  My opening pressure was 43. Nurse said it was highest she had seen.

So thats my story so far..... was given tabs and told to come back in 6 weeks.  NO explanation of condition and worrying thing is i dont seem to have gotten much relief from LP.  Is this normal???

Thank god my eye sight not affected... yet??? I didn't have any pain behind my eyes before LP but now i do.

Sorry for rambling on but i feel a bit lost about this whole thing!!!

THanks for listening

Niamh

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Hi,

Just wanted to say what a great and informative website this is.  I have found out more information from here than anywhere and that includes my doctors/hospital.

Keep up the good work!

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Hi,

Thanks for the welcome and the info you have given me. I think I will do some more research on the shunt as they want and answer in November when I go back to the hospital. If anyone can recommend and good sites to look up shunts on then I would be grateful. Thank you everyone I am feeling much better already, just knowing there are other sufferers out there.

Nicky  

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I've been absent from the internet for a month or two as I've just returned to live in England so I apologise that I haven't seen or replied to your message earlier.

BIH is still fairly new to me but I'm continously learning for I personally feel that when the medical drs in general know very little about the disease and how to treat it we really need to help educate them!!!

I'm so sorry that you have really been through the mill and so mad that the drs didn't take you seriously.  I'm sure the blindness scared the hell out of you!

As Karra said, do a lot of research on shunts. 

(Thanks Karra for stepping in and offering advice and support - for you honey.)  

I've personally not been recommended for a shunt although I was certainly desperate for one at one stage! Unfortunately in the main I've read a lot of bad press about them, but they certainly do help some people.  Do your research and make an informed decision.  When I get some time I'll do some more research myself and put some info into the group - so if any other members can help me out, all help gratefully received!

One final thing Nicola - you are not alone.  I'm always here via the group or email and I'm sure you will find other members of the group only too willing to support you and vice versa.

Take care and look after yourself.

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hi Nicola, sorry to here what,s been happening to you.Before you decide about the shunt ask your consultant to give you all the facts about it because if you read my post then you will know it isn't as striaght forward as the Docs like to make out.Even now 6 months after getting my second shunt inserted i am still have trouble with it from infections.So good luck  and keep positive will be thinking of you.

And a big shout out for Rain D,hi and i'm still hanging in there.

Karra

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Hi, I'm new to this so sorry if i muck it up a bit. I have been reading your experiences and felt the need to tell mine to you too. I am a 23 year old mum of 3 with a very supportive husband. 3 years ago to the month i went to the doctor complaining of terrible migrains which had been bothering me for almonst 2 weeks ,he checked me over and said it was a migrain and gave me some co-codamol. I went back 6 times in the next 2 1/2 months insisting on seeing a different doctor every time as i felt like i had no other choice because noone was listening to me. Eventually (i say eventually because i finally got a reaction) i  fell asleep one evening because of the drowsiness the painkillers were causing when approx 30 min later my husband woke me to suggest i went to bed, this was when i realised i was totally blind. I got rushed to a & e that night only to be told to come back in the morning. I saw an opthromologist the next day who gave me some diamox. I went back 2 weeks later and got referred straight to Kings College Hospital without being told what was going on. When i arrived i got told what was happening they did a blood test and decided to do a lumbar puncture, the reading was 36 apparently it should be around 15 or 18. I had regular check ups and everything was fine i regained most of my sight, well enough to be allowed to drive and everything was fine until june this year. I started having headaches again and so i went to my gp, he sent me back to the local hospital where they decided to do another lumbar puncture, this time my pressure was back up to 32, they warned me i may need a shunt put in but didnt give me any info on it.I have been waiting 6 weeks and finally got an appointment with my consultant in london i see him tomorrow and i am so worried. I thought i would do some research on the net and stumbled on this web page. I seems to unreal to be true. I didnt realise there were so many other people out there with the same condition. Sorry if i have bored anyone who has been able to read it all. Nicky   

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Hi Rain D,just read your reply and wanted to say thanks for understanding.Just writing my story has helped me greatly over the last couple of days,already i feel stronger in myself knowing there are other people out there that know exactly what i'm going through,my family has been amazing and so supportive but it is different talking to someone that has also been through this.

  It's great to know that if i have any questions about my treatment in the future there is someone that i can ask because most of the time i feel as if i'm floundering around in the dark.

I have another appiontment at hospital in 6 weeks and will find out then if or when i will need more surgery,fingers crossed it's no.I will keep you posted ,until then it's been great reading you welcome and again a great big thank you.

Karra

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It's lovely to meet you but I wish it were in different circumstances.  You've been through such a lot with your battle with BIH.  I admire your strength and your honesty.

I'm glad you've found this group helpful.  I set it up because I felt very alone when I was first diagnosed.  No one, not even the medical profession, knew anything worth knowing about the disease.  I spent hours researching online and felt that I needed to start a group here to inform and educate, but most importantly a support network.

I'm a little older than you, 37, and have a daughter aged 12 - I know how BIH affects your life and the life of your child.

I truly hope that things will improve for you and will send you love and healing.  Know that I am thinking of you.

Do feel free to post any questions, information etc.  I will do my best to answer...anything I don't know I'll try and find out.

Don't forget to check out the archived message threads - you may find something useful there too.

Take care Karra.

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hi i,m new to this website.I've been reading all your experiences with BIH and just wanted to share mine and let you all know how much this site has helped me.

Last year i went to my opticians because my right eye kept blurring and going black,just for a few seconds at a time.At the time my optician told me i had some swelling behind my eyes and that she was refering me to my local hospital.A month later i went for my first appointmentat the hospital.The Dr there at first told me it was possible i may have a brain tumour.It was one of the scariest moments of my life.I was admitted to another hospital that specialised in neurological disorders.After a MRI,2 CT scans and a lumbar puncture i was finally told i had BIH.

I was in the hospital for 14 days the first time,during that time i had to go through 4 lumbar punctures because my pressure was so high(59).I was also put on Diamox,500mgs twice a day,i was finally released but had to attend hospital twice a week for eye exams and even more LPs.After going through this for 4 months my consultant told me that i would have to get a lumbar shunt put in.This was because after so many LPs i could hardly walk and the pressure would only come down for a couple of days.

I agreed to have the shunt put in as i couldn,t face anymore LPs.I got the shunt in last november(2005) and i only had it in for 10 days when i got rushed back to hospital severely ill with meningitus,the shunt had become infected,i was rushed into emergency surgery to remove the shunt,thankfully i can't remember this as i was seriously ill.My mother told me this a couple of days later when i finally came round.I was in hospital for 6weeks while trying to get rid of the meningitus.

During this time i had to get an external drain in my spine and another few LPs and because the LPs were causing me so much pain the Drs decided to drain the fluid from my spine but at the top of my spinal column at the base of my skull.I finally got another shunt put in at the start of this year(2006)<but because of everything that has happened i am now walking with a crutch  i have had to give up my job and can't get about the way i used to.I'm only 32 years old but i feel so useless and washed up.

At my last appiontment at the hospital i was told the swelling behind my eyes has started to come back so has the headaches.I've been put back on Diamox again and told that i may need surgery again to replace the shunt or move it to the base of my skull.

I will find out at next appiontment but i'm terrified of what the Dr will say, i'm trying to deal with this as best i can because i have a 10 year old son and i'm trying to be strong for him.Thats why i'm so glad i found this website because it's shown me i'm not alone in this.

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Hello Elise!  Lovely to meet you.

I'm sorry to read that your younger sister has just been diagnosed with BIH; it's a tough thing to cope with at any age, I can't imagine having it at just 16.  Please stay strong with supporting her as she'll need so much love and understanding.

If you read "My Story" you'll see that it was just over a year that I was diagnosed with the condition.  I personally found that self education was the key.  I did a lot of research on the internet and whilst a lot of the stories can scare you having BIH doesn't need to be the end of the world; I'm currently in remission, symptom free and off BIH medication - hoping it's gonna last!

There is a fair bit of information here so I hope you'll have a good read through and it will help you and your sister and family.  If you have any questions please do ask; I'll certainly do my best to help whatever way I can.

Please feel free to contact me directly if you so wish.

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Firstly reposting Elise's introduction into 12pt font size.

Elise B.
younger sister with B.I.H 6:04 AM

Hi im Elise , i have a 16 year old sister with B.I.H, it was discovered bout 5 months ago, they thought that she had M.E , but recently they said it was B.I.H. and maybe wasnt M.E to start with , we,d never heard of it before, she,s been very poorly and has missed alot of her school life due to what we thought was M.E, now 16 she should be out partying and having fun, but sadly she cant as she has alot of headaches,some times her head aches are so bad we cant see her because of the noise,

Im just glad i have found this site ,and would be grateful for any imfomation , i look foward to looking through the group, and any one is welcome to Email me any ages male or female, always happy to chat not just about B.I.H.

thanks for reading this

Hugs

Elise %#&!*%

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Hi im Elise , i have a 16 year old sister with B.I.H, it was discovered bout 5 months ago, they thought that she had M.E , but recently they said it was B.I.H. and maybe wasnt M.E to start with , we,d never heard of it before, she,s been very poorly and has missed alot of her school life due to what we thought was M.E, now 16 she should be out partying and having fun, but sadly she cant as she has alot of headaches,some times her head aches are so bad we cant see her because of the noise,

Im just glad i have found this site ,and would be grateful for any imfomation , i look foward to looking through the group, and any one is welcome to Email me any ages male or female, always happy to chat not just about B.I.H.

thanks for reading this

Hugs

Elise %#&!*%

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It certainly sounds like your mum is suffering badly from BIH.  I was only diagnosed last February so am still learning a lot about it myself, and if her gp is anything like mine they know absoloutely nothing about this illness because it is so rare.

Is your mum on medication and pain killers?  I take it she has had an MRI scan?

I was given diamox tablets and then had to endure lumbar punctures on a monthly basis but thankfully I seem to be recovering a little from it now.

It really is so debillitating at times - I've been there.  I really feel for you and your mum.

The only advice, othere than the meds and the lps, I was given by my consultants was to lose weight and exercise.  If your  mum is anything like I have been then exercise is probably out of the question at the moment.  I know I had so little energy that even a 10 minute walk was too much for me.

If your mum could find some way of pain relief she would feel so much better.  She or you must badger your gp or consultant for help in this area; they need to understand it is NOT just a headache it is excrutiating pain in the head!!!

I've listed some other bih/ptc groups here in another message thread....you could try asking for help and information there as well.

Does your mum know anyone else with BIH?  I've found that that really helped me.

All the very best and keep in touch.

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Hi, my name is Amanda and I'm from Glasgow, Scotland -- my mum was diagnosed with BIH roughly 3 years ago now.

They started treatment with regular lumberpunctures and she was in hospital for 3 months because she was so ill with it.

Then they decided to put in the peritneal shunt, which was draining too much fluid and making her have low pressure headaches instead of high pressure headaches -- so they inserted a valve type thing (cant remember what it was called now!).

She has never been without a headache in the 3 years since diagnosis, but now the headaches are getting worse and worse by the day -- she has had to take the past 4 months off work because she can barely stand nevermind nurse people!

Now they are thinking of removing the shunt altogether because they think that it still may be draining too much fluid. And they have told us just to keep our fingers crossed that it works and the BIH doesn't come back.

Nothing relieves my mums pain, she has tried all sorts of painkillers both over the counter, prescription and herbal.

I joined in the hope to find something that could maybe help ease her pain -- she is struggling so hard to cope with this awful illness.

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Christina!

for accepting my invitation to join my BIH group.

Glad you are here and hope you find the information here informative.  Please feel free to contribute in any way you can. 

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to the BIH group.  Pleased to have you here.  I hope you will learn something about BIH and invite others to join us here.

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Glad to be a member of this group. Again, thanks much for the invite.

I wish you Peace and Happiness,

Mike M.

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You are very to the group.

I'm sorry to hear that your BIH which had been in remission is back again.  I do hope that it's not too long before you get to see a Dr and get some help for it.  Feel free to contact me at any time if you need a sounding board....or post freely here in the group. 

I am here for you as are all members here.

Please share any information/experiences/knowledge etc....this group is to educate and inform and to support each other.

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hi there

I thought everything was ok, but the last couple of months headaches and stars have come back, eventually went to gp who said it has come back, so waiting to hear from consultant that was a month ago and still waiting, i was informed that it could be six months before i can see him, having good days , only a dull ache but mostly bad days where it worse when you move but when you are a single parent you just have to get on with it.

thanks for your interesting accounts of what you have gone through

keep up the good work

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Glad you found your way here and I hope that you will talk about your experiences etc and share with others here.

As far as I am aware, there is only 3 of us in this group that have been diagnosed with BIH/PTC: myself, Vicki and yourself.

Please feel free to invite anyone else to join us here whether or not they have BIH.  I started this group as an educational and informative support group.

Thanks for being a part of this Maeve.

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Hi all and thabks to rain for sending me an invite to meet you all! This is a fantastic facility, it's so good to meet others who are going through or have been through the same thing. Rain, I hope you're keeping really well, I'll be thinking of you on the 18th.

Talk soon,

Queen M

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Firstly well done NHS!  Pleased you got seen so quickly.

I'm still gathering information about lumbar punctures (I've not had any yet) but from what I've been told the pressure should not be over 18.

I've been detailing my story here in the group - check the post entitled "My Story" and you'll be able to read all about what I've been through.

If you feel that you'd like to share your story to help others then please open up a new message thread.

One thing I have learnt is that BIH is a very individual thing, affecting people to varying degrees.

Best of luck with everything.

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Hi there,

Yeah this is all through the NHS, dunno why it's moving so quickly I was shocked too as we all know what the NHS is like - me more than most kinda working for it (I'm a student nurse), I do feel fortunate with my Dr actually listening to what i'm saying etc and being helpful.

I am not too sure as to what is happing with the lumbar puncture as I only had it done last Tuesday so am still awaiting the investigative results although the pressure was 24/25 or something - which the nuerologists said was higher than it should be but not overly so, so I am now awaiting the results and an apponitment with the neurologist to discuss whats next also while this is all going on I am awaiting an appointment for the MRI, also while studying about everyone elses illnesses. LOL, this also scares me sometimes as you hear what other people have to go through.

So what kind of tests have you gone through then?  How did they come to the prognosis?  It's kind of scary coz they dont tell you too much just that they suspect and then dont really explain anything - ive had to look up my textbooks to check about it

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It's good to see you here although I'm sorry that you may have been diagnosed with BIH.

You've certainly been very lucky with your GP though and things seem to be moving fast!  Was that through the NHS you managed to get a CAT scan and lumbar punctures done so quickly?  If so a big clap on the back for the NHS. 

I've had my MRI Scan now but still awaiting lumbar punctures....so you're ahead of me in many ways.  What was the pressure results from your lumbar puncture?  I presume they checked also for infection etc?

I was only vaguely diagnosed with BIH in Feb of this year so we're both very much in the same boat.  Until I have my first lumbar puncture they can't definately diagnose me but it's certainly looking that way.  All of what I have learnt and am still learning has been through the internet...you know what drs are like? lol.

Please use this group as you feel you need to; whether to share your thoughts and experiences or to let off steam etc.  We are all here for each other, and here for you. 

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Hi there, I have for the past few months been getting daily headaches which are extremely painful at forst  I thought they were just tension headaches but when I had them for about 3 weeks constantly I decided to go to my GP for some advice.  I was referred to a medical clinic and then for a CT Scan which was clear, so I was referred to a neurologist who thought she saw some swelling in the nerves behind my eye and suggested it might be Binign Intercranial Hypertension - I have never heard of this before so have been trying to find out as much about it as possible since then - I had a lumbar puncture last week (not the most enjoyable experience I have ever had) which showed the pressure to be elevated.  I am now waiting on an appointment for an MRI and another appointment with the neurologist for an outcome on the lumbar puncture results.

It is good to have found a site like this to give more more information.

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It's really good to see you here.  You've been such a help to me with my diabetes, giving me good advice etc.  I value your input.

As far as I'm aware, ie according to the docs etc, BIH is not connected to my diabetes.  I was actually told that my blood sugar control was fantastic whilst I was in hospital just recently and they weren't at all worried about my diabetes.  So that's good! lol

I'm doing research etc as to if there could be a connection to diabetes but so far I haven't found anything that indicates it could be.

Sorry to hear that your diabetes is causing you problems with your sight - will send you healing and pray that your sight will last longer.  Care2 wouldn't be the same without you!

And please don't worry about being a nut (you haven't gotten to know me that well yet or you would realise I'm a bit crazy myself...lol) feel free to post away - I truly value your postings.

Take care of yourself and once again thank you for joining BIH! 

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Welcome to the group!  Good to see you here.

I hope that we can all learn and educate ourselves and others of this condition.

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It's great to meet you here.  Welcome to the group.

It's great that you wish to learn in order to help others.  What is it you do?

I thank you also for your prayers.  I remain positive as life is too short. 

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Thanks for joining the group and showing your support.

Again feel free to contribute in any way.

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Good to see you here.

I hope that the information you will be reading here will prove useful and informative; hopefully by creating this group more people will become aware of BIH.

Please feel free to ask any questions etc..

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Good to see you here. 

I hope that you do learn something about BIH as it is one of my aims in starting this group: educatation and support.

Craniosacral therapy is lovely but I personally didn't find it helped me a lot, although I'm sure that it helps others.  I never knock complementary therapies but find out that although I believe all therapies work they don't all work for everyone, we all have to find what works best with us.  Will certainly be checking out that website though, thanks.

Any questions please ask away.  I will do my best to answer but I am still very much learning about BIH myself so might not be able to answer right away at times.

Thanks again.

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Rain, good for you hun, for starting this group.  I am so glad to see it here, and for he questions you asked in the diabetes group.  As you know, I am a diabetic, and this alone puts us at serious risk for many other diseases and complications.  I have been fortunate, if you will, to not have been diagnosed with BIH, but at the same time, the misfortune of all the other eye issues related to diabetes. the retinopathy.  I am in the process of losing my eye sight.  So, I won't storm in here being a total nutcase, but I will sit here and learn from you as well while I can still read some things.  And if you need help with anyinfo, just ask, you know I will do what I can to help.

Peace and blessings....Rob

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Rain!!!!

never heard of the illness before, but I´m interested in learning!

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Hello Rain

Thanks for inviting me to your group.  I had never heard of BIH before now.  I'm here to offer any support I can while you go through this life challenge. 

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Hello Rain! Thanks for the invite. We are interested to hear of this new BIH.

Peace, love, and ebauty

Ross

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Hello !

my name is tulsi and i am always eager to learn more since i work a lot helping sick persons is nice to know more about certain sickness i thank you for the invite and pray that you will become healthy again.

in loving service

tulsi

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Hello Rain

Thank you for inviting me I hope to learn alot and maybe be able to use this knowledge to help someone someday, you just never know if it could be a sister or mother brother or father. The key to everything is never stop learning and growing .

Leah

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I always appreciate the invites to groups more so when I learn something.  Thank you for the invite.  Have you considered Craniosacrial therapy?  I would recommend checking out www.upledger.com for more information on this treatment.  This may be something you are already aware of but thought it best to share the info.  good luck and keep us posted.

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 to BIH!

Like you I'd never heard of BIH until just recently (see "My Story...").  Funnily enough I had been having craniosacral therapy to try and help me....I found that it helped for a few days and then I had an ulmighty attack of the headache and sickness.  I went for a good six months but found I wasn't really getting anywhere with it, although I really enjoyed the relaxation part of it!

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Deejoyz,or Deej

This is the first time that I ever heard of this.  I'm aware,however that cranial sacral therapy is a type of manipulation of the head/neck area to allow the fluids in cranial to flow properly.

I was told by a co-worker the other day that as we age,the fluid becomes less& less.

I recently put in an order for a device call still point that rest between the neck and cranial to massage this area. I have hypertension,and am finding ways to cope with this.

Thanks for inviting me to your group.

May you have resolution in finding the proper treatment for this condition.

Deej

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 [ accepted]

 both for joining BIH and for introducing yourselves.

Please ask any questions you may have and I will do my best to answer them....I'm still learning much about this myself so do not have all the answers.  Also I welcome your input in any way.

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Please introduce yourself as you arrive here in the BIH group. 

Please say . 

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