Hello everyone. I am new to this support forum and newly diagnosed.
|Subject: Hello everyone. I am new to this support forum and newly diagnosed. Tue Aug 07, 2012 4:36 pm|| |
I am glad to be amongst others who can get the symptoms of IH. After years of suffering symptoms ranging from palpitations, dizziness, vision loss, and weakness in extremities along with neck and upper back pain ranging from moderate to severe and right eye headaches I was diagnosed with ideopathic intracranial hypertension this last June. I have had several spinal taps each one with my pressure being so high the fluid shot out of the tubing used to measure. I was hospitalized again last week and the same result; stroke symptoms, spinal tap, improvement. MD's recommended a shunt. Anyway, I recently went to MDJ where Wylee recommended this site for me. Today I am weak and nauseated. Somedays I cry; others I am ok. I have 2 kids a 5 yr old daughter and a 10 yr old son. I am a nurse and have not been able to work since June bc of dizziness and extreme fatigue. I live in GA. Thanks for listening. I take diamox three times a day, zofran as needed for nausea, and percocet as needed for pain. That's a summary of me. I just want to feel better longer than a couple of days. Enough of my gripe fest. Thank you all for listening and
Wylee for recommending this site.
My husband is gratefull I am joining a support group to vent, lol. I think he is getting worn out. Oh yeah, and I also get occasional confusion and the dropsies as I affectionately name my clumsy days. One question for all of you right quick. If all tests have not been run to rule out other causes, I am in my 30's, normal weight, and spinal fluid neg. How can they say for sure it's ideopathic or is that just bc I have a lazy MD? It seems like their aren't many MD's who take this seriously and it infuriates me.
|Subject: Re: Hello everyone. I am new to this support forum and newly diagnosed. Tue Aug 07, 2012 10:04 pm|| |
These are the reasons I was told I have IIH
1 small ventricals
2 high pressures Over a long time
3 no head insures
4 no drug reactions
5 no brain bleeds or tumours or other nuero problems
My stats 36 in may 2011, 32 in aug 2011, 38 in nov 2011, vp shunt put in may 2012 set at 1.5, 29 in June 2012 so shunt setting changed to 1.
Dyslexic & Special
|Subject: Re: Hello everyone. I am new to this support forum and newly diagnosed. Tue Aug 07, 2012 11:19 pm|| |
Thank you. My intracranial pressure readings are consistently over 300 and spurt out the top of the tube they use to measure so I am thinking I need a shunt as well. This has happened even while on diamox. I appreciate you sharing and support!!
|Subject: Re: Hello everyone. I am new to this support forum and newly diagnosed. Wed Aug 08, 2012 12:50 am|| |
Welcome to the site ... I'm so glad that Wylee helped you to find us. I know you'll find this site to be a great source of support and information. It has been a Godsend for me!
I'm sorry that you are suffering so much with your symptoms right now. *hugs* Are they talking seriously about fitting you for a shunt? Feel free to come and vent here anytime, sweetie, that's what we're here for.
|Subject: Re: Hello everyone. I am new to this support forum and newly diagnosed. Wed Aug 08, 2012 2:05 pm|| |
Thank you so much for your support!! I am currently communicating with John's Hopkins about a consult for possible shunt placement. It's 1 hour 1/2 flight from Atlanta and they specialize in treating CSF disorders and have a building and team of specialists dedicated to treating idiopathic intracranial hypertension.
|Subject: Re: Hello everyone. I am new to this support forum and newly diagnosed. Wed Aug 08, 2012 4:11 pm|| |
to the group!
I'm glad you have found us!
1. Of or relating to a disease having no known cause; agnogenic.
2. Of or relating to a disease that is not the result of any other disease.
You can also find the diagnosing criteria here;
A lot of IHer's find relieve and even remission with a shunt so please try and remain positive, with your pressures being so high it might be the best thing for you and that's the main thing you need to think about xxx
You can find our information about shunts in our IIH surgery and information sectionhttp://www.ihaveiih.com/f59-iih-surgery-and-information
Your Husband can also find support in our Partners and IIH sectionhttp://www.ihaveiih.com/f21-introductions
Please keep us up to date with how things go for you!
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|Subject: Re: Hello everyone. I am new to this support forum and newly diagnosed. Wed Aug 08, 2012 4:19 pm|| |
Hi B, and so glad to see you over here. I love Babby and the work she is doing on MDJ, just doesn't have the traffic that is here.
IIH is a disease of exclusion. The docs rule out all other possible causes, and what is left is called IIH, just meaning that your intracranial pressure (ICP) is elevated due to some unknown cause. The docs go by our symptoms, which do vary a bit from person to person, which makes things even more interesting.
I am very interested in learning more about what JH has going on. One of the docs that is very involved with the ihrf (intracranial hypertension research foundation - please join them, it's free) is from Maryland and has been associated with JH and the Brain Center (Michael Wall, Neurologist). Dr. Gray has other docs that she works closely with, but I don't think she has an extensive network set up.
Please take a good look around the site. There is a treasure chest full of great info available here, including those great handouts for how to talk to others about IIH. Again, glad you made the visit.
|Subject: Re: Hello everyone. I am new to this support forum and newly diagnosed. Tue Mar 19, 2013 9:25 pm|| |
hiya everyone im new on ere and from manchester area i found this site on google and cried as i have never met or spoke to anyone with iih..im 24 and have a daughter whos 7 i got diagnosed 2 years ago after 4 years of constant trips to my gp with headaches to be told i had migraine,anxiety and depression..after 4 years of suffering i almost lost my sight and went to specsavers who noticed lots of fluid behind my eyes i was then taken to hospital...i have narrowing of tranverse sinuses also and have been to cambridge twice for 6 stents to be placed into my sinuses..i take diamox,topiramate.cyclizine and naproxen my day to day life is awful constant headaches and in and out of hospital for lps still with raised pressure....i have lost 82% of my vision and been told eventually i will go blind ive had a left optic nerve sheath venstration which wasnt succesful!! i still hold onto to hope and im so thankful ive found this site
for reading my story xx
|Subject: Re: Hello everyone. I am new to this support forum and newly diagnosed. Tue Mar 19, 2013 9:58 pm|| |
Oh my, Helen. This does not sound good.
Welcome to the forum! We have many members from your general area, so I hope they will be around soon. I do know that there are things that can be done to help save eyesight, besides stenting. Have your docs said anything a shunt? I would think immediate pressure relief is warranted. Can they at least do lp's to get your pressure down in the meantime?
We'll try to help you get a better understanding of IIH and possible things to do to get you better.
|Subject: Re: Hello everyone. I am new to this support forum and newly diagnosed. || |
Hello everyone. I am new to this support forum and newly diagnosed.
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