|Subject: Kristine diagnosed 2008 Sun Jul 22, 2012 7:19 pm|| |
Hi my name is Kristine and I am 27 years old, I was diagnosed with Pseudo-tumor cerebri syndrome or IIH in Dec. 2008 I was on meds for about 6 months and had an LP done. After 6 months everything went away no headaches, vision problems. I have been fine... I was not told this was a lifetime diagnoses and thought once I got better that was it. Now the last couple months I've had really bad headaches, vision probs, and my ophthalmologist has informed me that the pressure in my head is back. I have never heard of IIH until now and do not know anyone else with this, Im just looking to understand IIH better ... It is now July 2012 and This is my story as it unfolds.
A couple weeks ago I went to see my ophthalmologist because I have been getting really bad headaches again, and I noticed that my vision was a little blurry, as the days went on it got worse in my left eye. My Ophthalmologist was able to see behind my eyes and told me that there was pressure pushing on my optic nerve. I was shocked to hear that once again I had this fluid build up, and didn't understand what caused it. When I first had this problem in 2008 I was told that if I lost weight I would be fine. I was 220lbs and only 4'10" so I lost weight and got down to 185lbs, I know not allot, but I lost, and with that a spinal tap, and the diamox for 3 months and then Topamax for 3 months I was better. I have maintained my weight at 185lbs for the last 3years and had no current episodes. I didn't know this was an on going thing.
On Monday July 16 2012
I went to my Neurologist's office hoping that I could get started on Diamox like last time and everything be ok. But when I got there they said that I could not be seen because I need a new refferal because it has been 3 years, and that the Dr. was going on vacation so my soonest apt. will be the end of Aug., so we went to my Reg. Dr. (she was out) and the Dr. who saw me did not know what IIH was, said she couldn't find anything in my chart about it, and wanted me to explain what IIH was. She then said she can give me a referral but it would take up to a week to get it approved. So because of the pain I was in, My Husband and I decided to go to The ER, we thought maybe at-least there I could get a Spinal Tap or something.... So when we got in we explained that I had IIH and how we had went to the neurologist ect. ect. , so they did a CT scan, and phoned the Neurologist who remembered me. The Neurologist said not to do a spinal tap yet, but to start me on the Topamax and see if that works first. He still is not able to see me until the End of Aug. so hopefully the Topamax will do the trick. The Hospital gave me Norco for the pain ( I should have known better) Norcos make me sick so all day (Tuesday 7-17-12) I was Nauseous, and in allot of pain I think from being under the bright lights in the hospital for so long with no relief. So I spent Tuesday in the pitch black, nothing seemed to help with the pain. I'm so thankful for my family, they came together to help and support me, my dad was able to take my daughter to his house the last couple of days so she was able to have fun wile I focused on getting better.
Wednesday July 18 2012
I am doing allot better, I still can't see good out of my left eye, but my right eye is good. I do have double vision it kinda comes and goes at the moment, and both eyes are fading black and then coming back. The pain today is minimal, and Im excited that my daughter is on her way home The gushing sound in my ears is also not present today so far witch is a relief. Something I have found to help my eyes like wile on the computer is to wear dark sunglasses, that and wile also watching TV.... as I have noticed that the harsh lights seem to trigger the pain, and also cause my eyes to fade more often.
Wednesday Night July 18 2012
The pressure got so bad tonight that I went to the ER begging for an LP... they pulled off 40cc ??? dont really understand all the terms yet. but I couldn't get an opening or closing pressure... The ER Dr. said that because Im so short that my vertebrae is small and hard to get into... it took 30 mins just for her to finally get the thing in my back to remove the fluid. So she was not able to get an accurate reading unless Im laying on my side and because it was so hard to get into my back she had me sitting up... so the Dr. estimated my opening pressure to have been at 30-35 ??? She also told me to stop the Topamax and started me on Diamox (I thought I had to start it slowly, but they have me taking it every 12 hours already?) The ER Dr. said that my Nerologist should have started me on Diamox first and not Topamax.... Im feeling better than I was but still not good.
Sunday July 22 2012
Well it is now Sunday, and I am happy to say the Diamox is helping, it is a slow recovery, but I'm thankful I'm able to recover I start back to work on Thursday so hoping to be functional by then as my left eye is still not working properly. No one at work knows that I have IIH, I plan to talk to my boss now that I understand this is a lifetime thing but I am hoping to do that when I'm in remission, so I can reassure her I am capable of still doing my job. I love my Job very much and have done allot in school to get to where I am, and I refuse to allow this IIH to get in the way of that. Thank you for reading my story and I will continue to post updates as they accrue.
Kristine / AmethystRiver84
|Subject: Re: Kristine diagnosed 2008 Sun Jul 22, 2012 7:58 pm|| |
Hi Kristine welcome to the group. I was like yourself diagnosed in May 2010 had it for 6 months and got better but was never told it was a life long condition. Mine came back in November 2011.
This forum is great for any questions your have.
Everyone experience with this condition is different.
I had to tell my job this time. Its a hard illness to understand and there are days I don't feel the best so I needed them to know that. I'm very rarely out sick cause of this. I work in an office so I make sure I take my breaks and step away from the PC as often as I can.
|Subject: Re: Kristine diagnosed 2008 Sun Jul 22, 2012 11:00 pm|| |
Hi Kristine and a very warm welcome to the group.
Sadly it seems none of us were told initially that IIH was a life long thing or that we could go into remission for anything between 6 months to 20 years in come cases. I suppose thisi s because there is still much unknown with this disease, and there are still few doctors who have knowledge or experience in IIH.
I'm so pleased the medication is working for you, and hopefully you will be able to function much better. I want to reassure you that you can work with this condition, especially if you keep your employers informed every step of the way, and adapt to doing things a little differently. I know it may sound easier said than done, and I wouldn't be saying this if I hadn't done it myself. I was diagnosed at 20 after a year of having it, was put on Diamox and went back to work 2 weeks after coming out of hospital. I also went back to college for 2 years, and then went on to have a good career with our Health Authority in the UK until retirement when I was 39.
I am no super woman I'm just like all of you, but I was determined that the condition wasn't going to keep me down and I somehow managed to find ways to adapt to feel like I had control of it. This is why I started this group, to help our members find ways to be able to cope and manage doing things that will enable a better life with IIH.
You have a wonderful attitude and I'm sure you're very stubborn which is a must with this, as well as a good sense of humour. I'm so glad that you joined us and I do hope you make a home with us here, our members are fantastic and inspirational people, who will have some wonderful and helpful advice and information.
|Subject: Re: Kristine diagnosed 2008 Mon Jul 23, 2012 2:02 am|| |
Hi Kristine, so glad you came over for a visit.
Looking forward to keeping up on our chats. Just here you will find many more friends. And ideas, and support.
Please do keep a watchful eye (pun intended) on your vision. Need to get that pressure off your optic nerve! But, I am so glad you were able to find someone through the ER that has a bit of knowledge about IIH. I agree with the Diamox first, Topamax can come later (they are using a lower dose form of that now in combo with phen-fen as a diet pill.
Feel better soon!
|Subject: Re: Kristine diagnosed 2008 Tue Jul 24, 2012 8:07 pm|| |
My goodness Kristine, that is quite a busy schedule that you have. Probably at this point remaining flexible is a good option. Assuming that your docs are willing to work with you, it should be a case of trial and error getting your symptoms under control, either through meds, weight loss (here we go again with that one :roll: )
or surgery or even a combo of them. "They" say that even a 10% loss in weight can make big differences. Worth a try, again.
You are so lucky to be working with the little ones. They are so eager to learn. I do hope it all works out for!
And, I am so glad you are here, too!
|Subject: Re: Kristine diagnosed 2008 Tue Jul 24, 2012 9:16 pm|| |
Welcome to the group! I'm so glad that you have joined us.
I can imagine how frustrating it must have been for you to have IIH come back to you after such a long remission ... I think your positive attitude and determination are wonderful, and I think it really does make a difference.
I'm hoping that the Diamox will get you back into a good place again where you are able to work and do all the awesome things you are planning, and be relatively pain free in the process. What dose do they have you on? I'm at 1000mg, but was on 1500mg for quite a long time. Was able to reduce the dose after some weight loss. I'm not in remission, but my symptoms are managed and I live a good life. *hugs*
|Subject: Re: Kristine diagnosed 2008 Wed Jul 25, 2012 12:34 am|| |
Hi Wylee its great to hear from you again
Im on board with the meds and even the weight loss, I've changed some of the things I eat to better options, like no sodium or minimal, as it seems to be in everything we eat even milk ... all breads are whole grain wheat (not enriched flour) and instead of baked potatoes I make a yam, as I have found Carbs and salt trigger headaches for me, also everything in portion, and if Im hungry between meals I dont eat anything other than some kind of melon (watermelon, cantaloupe, honey due) or strawberries, blueberries, kiwi, banana. and other than a cup of coffee in the morning, I stick to water all day I TRY to drink like Im suppose to but for some reason I just dont think to drink during the day tell Im really thirsty or eating a meal, so I am trying to keep a glass of water by me at all times to try and help me drink more.
I am 4'10" and weigh 185lbs (I know way too much) when I was diagnosed in 2008 I was at 220lbs..... my goal is to get to 120-130 where I should be for my height.
I really don't want to have any surgery if I can help it I have read so many horror stories about shunts and how some of our fellow IHers have to keep having them replaced, it scares me. :(
Hi Banana's mom
for right now they have me on Diamox a 1,000mg does a day or 500mg pill every 12 hours, it seems to be helping but Im sure once I can get some weight off that will help...keeping my fingers crossed.....
Thank You both for your kind thoughts and words... hope you are both doing well also
Kristine / AmethystRiver84
|Subject: Re: Kristine diagnosed 2008 Wed Jul 25, 2012 12:43 am|| |
I do have a question... maybe I'll post it in the question sight of the forum as well... but I have 2 daughters 7 years old and 10 years old... I have been pretty hands on with them, and now with this I have had days where it is hard to get up.
How do you explain or talk to your kids about this, with out scaring them.
My little one stresses over everything and we don't know why but since preschool will actually loose her hair in places the Dr. says from stress ( she does fine all summer here at home and it all grows back and within a month of starting school she starts loosing it again) Dr. says there is good stress and maybe she stresses on her work to much....
anyways sorry but that gives you some background.
How would you explain IIH to a 7 year old and a 10 year old?
Kristine / AmethystRiver84
|Subject: Re: Kristine diagnosed 2008 Wed Jul 25, 2012 2:47 pm|| |
Kristine, IIH is such a difficult adjustment for everyone I'm glad you've talked to dr about your concerns. I honestly would consider short-term therapy, especially for your little one. There are also a few books out there you can review-
When Pete's Dad Got Sick: A Book About Chronic Illness (Helping Kids Heal) by Kathleen Long Bostrom. Talks about Pete's anger and adjustment to having a Dad that was able to run and play to one that can barely walk. If I remember correctly, it has tips and suggestions for how to recognize problems and where to get help;
Mommy Has to Stay in Bed by Annette Rivlin-Gutman.Talks about bed rest, but can be used for short or long term issues. Basically addresses anger, fear, and boredom of the child;
Raising an Emotionally Healthy Child When a Parent is Sick by Paula Rauch and Anna Muriel. It's a book for parents that gives all kinds of advice, signs to look for, where to get help, etc. They used to use it for Harvard med students, so I'm not sure how clinical it is.
I think most importantly you have to be honest. Kids are very perceptive and usually become more angry or scared if they think you're hiding something. They also feed off of your anxiety or concern, so best to be honest and remove that additional tension. You don't have to give them details, but it's ok to let them know you're not feeling well. I really think a family counselor or therapist would be the best resource..they'd be support for you and your children. Most counties have a family counseling center of some sort that accepts Medicaid or works on a sliding fee scale..there are also private pay resources that do the same, so you may want to shop around and check for reviews. Your pediatrician may also have someone they use. I hope that helps!
|Subject: Re: Kristine diagnosed 2008 Thu Jul 26, 2012 12:01 am|| |
Good info Julie.
Heidi, can we get a section where this type of info can be readily found? Nice to know that there are such books available. Sounds like the ideal answer to Keistine's situation, and maybe others with little ones too!
|Subject: Re: Kristine diagnosed 2008 Thu Jul 26, 2012 9:38 pm|| |
I hope they help. Kids seem to respond well to books and hands on activities, so fingers crossed it will help! And thanks Linda, I used to work in kids mental health so I have all kinds of nuggets..lol.
|Subject: Re: Kristine diagnosed 2008 || |
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