HomeRegisterLog inFollow us on facebookFollow us on twitterFollow us on youtubeFollow us on LinkedinFollow us on PintrestContact usFeedback


Share  | 
 

 Savannah Clayton - Diagnosed August 7, 2012

View previous topic View next topic Go down 
AuthorMessage
savannahdale
Member
Member
avatar


PostSubject: Savannah Clayton - Diagnosed August 7, 2012   Mon Aug 13, 2012 4:19 pm

Ok...so...I guess I'll just start from the beginning.
Starting around July 30 of this year, I started having headaches. I mean, I had headaches before, but these were more frequent and more intense. Then, around the 3rd of August I started having the double vision (this was a Friday). The following Monday, we decided we needed to go to the doctor because the double vision wasn't going away. Dr. B looked at me for about 2 minutes, and sent me for a CT scan, which was clear. Then, kind of on a whim, we decided it might not be a bad idea to go see my eye doctor. He looked at me with 3 different lights, and told me I had Pseudotumor cerebri. I was a bit freaked out..but he explained that he medicine (minocycline) I was taking for my acne had a rare side effect that (lucky me) I ended up dealing with. So, he called my doctor and made me a prescription. So now I feel all crappy from that medicine, and they made me have an MRI (also clear).
It's been about a week since the doctor's appointments started, and they're sending me to a neurologist this week some time.
This all sucks for me, mainly, because I'm supposed to move back to college on Wednesday, and I still can't drive because of the double vision.
The neurologist is supposed to tell me whether or not I can attend classes this semester, and I'm really hoping I can. It's my sophomore year at UofA!! fingers crossed
I'm freakin out. :shock:
Help
Back to top Go down
medmisfit
Admin2
Admin2
avatar


PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   Mon Aug 13, 2012 4:59 pm

Hi Savannah, welcome to the group!!! It's perfectly natural to be freaking out w/ everything you've experienced, but really try not to worry. It sounds like you have supportive and thorough physicians, so hopefully they'll get you on the right track soon! I'm sorry this may affect your sophmore year, but better to take care of yourself now and catch up when you're feeling better. I hope it all works out!!!

hug
Julie
Back to top Go down
BananasMom
Admin2
Admin2
avatar


PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   Mon Aug 13, 2012 6:58 pm

Hi Savannah! Very Happy Welcome to the group. I'm glad that you've found us, and I'm so sorry to hear about all you are going through with your pseudotumor cerebri diagnosis. *hugs* I know it is so overwhelming and scary at first. It sounds like you are getting good care though, so hopefully they'll have you on the right track soon, and your schooling won't have to be too severely affected by this.

Double vision was one of my presenting symptoms too, and I know it's really tough to deal with. Do they have any plans to do a spinal tap? Spinal tap was a part of my diagnostic process and it actually gave me a lot of symptom relief, including getting my double vision straightened out. Since then (November 2009 when I was diagnosed) I have been maintaining on Diamox (Acetazolomide) and have done pretty well.

Lots of people do have good outcomes with this condition, so try not to be too afraid. *hugs* Keep us posted on how things are going for you.
Back to top Go down
savannahdale
Member
Member
avatar


PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   Mon Aug 13, 2012 7:07 pm

They put me on Diamox last Tuesday. And I just now got my Neurologist appointment, which will be this Thursday. They don't think they will have to do a spinal tap, but that the neurologist will probably give me some more medicines.
Back to top Go down
Sophiasmom
Admin2
Admin2
avatar


PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   Mon Aug 13, 2012 8:22 pm

Dear Savannah;
you may actually be one of the lucky ones, because usually if it's due to the Minocycline, then stopping it will lead to resolution of your condition. I have been listening to the IHRF conference from 2011, and recall they said after stopping the med it tends to go away within weeks, although it can be months and rarely up to a year. most of the rest of us are dealing with a life long condition. so hang in there, your end is in sight! hopefully your double vision will resolve by the end of the month so you can get to school on time.
Deb
Back to top Go down
Heidi
Admin1
Admin1
avatar


PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   Mon Aug 13, 2012 8:59 pm

Hi Savannah hug and a warm welcome to our group. It look s like you have got a really good Neurologist, especially one with IIH knowledge which doesn't happen often. Hopefully once your body adjusts to the medication you will start to notice a difference. Try and stay positive and we are all here for you. We have lots of helpful booklets and information and our members and staff are very supportive and helpful.

Heidi:D
Back to top Go down
http://www.ihaveiih.com
Guest
Guest
avatar


PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   Tue Aug 14, 2012 2:52 am

Hello Savannah, and Welcome3

I am not understanding exactly why they are not doing a spinal tap to see what your pressure is? That is something I would ask. LP was the test that was used to diagnose me, taking into account my symptoms.

I have never heard of the acne med causing this--but I am not as educated about this condition as some of the other people on this site...I hope you can just stop that med and go back to "normal".....I wouldn't wish this condition on ANYONE.

On a different note, I am from Arkansas and graduated from the UofA in Fayetteville. My daughter still lives there and I hope to move back one day. GO HOGS! Smile
Back to top Go down
Wylee
Member
Member
avatar


PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   Tue Aug 14, 2012 4:09 am

Hi Savannah and welcome2

I too hope that going off the acne med will be enough to get you past this ordeal with the IIH. Having double vision can make your life very challenging, so please be careful :roll:

Do have a good read around the site. You will find lots of helpful info here. And us folks too. Feel free to ask any questions that you may have, we will try to point you in the right direction.
Back to top Go down
savannahdale
Member
Member
avatar


PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   Tue Aug 14, 2012 9:00 pm

Thank you all for the words of encouragement and help. I'll be sure to update somewhere on here after my neurologist appointment tomorrow!
Thank you again!
thank you
Back to top Go down
Wylee
Member
Member
avatar


PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   Fri Aug 24, 2012 11:12 pm

Savannah, how did your appointment go? What did the neurologist have to say? Will there be a lp in your immediate future? Most importantly, how are you feeling????
Back to top Go down
savannahdale
Member
Member
avatar


PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   Sat Aug 25, 2012 2:38 am

I actually just had my spinal tap this morning.
It wasn't near as bad as I thought it was going to be, but the putting in the needle and pulling it out hurt :P
My beginning pressure was 32. Then they removed 25 cc of fluid (and he even showed it to me! super cool) My ending pressure was 17. I couldn't believe how much of a difference it made!
I had to sit around for a little bit before they let me leave, but I've pretty much just been laying around all day. We've been alternating ice and heat every now and then. No headaches so far, but my back is pretty sore. And getting up and sitting back down isn't so much fun.
But, I'm really glad it's over. No double vision at all today! And I don't have to go back to my neurologist until September 15! Smile
Hoping I don't end up developing any more headaches tomorrow or throughout the rest of the night.
Very Happy
Back to top Go down
Wylee
Member
Member
avatar


PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   Sat Aug 25, 2012 3:24 am

Great news, Savannah!!
The tap pressure is for sure elevated, and 17 sounds like a reasonable number to bring it down to. And taking it easy for today and tomorrow is a good idea!!
I hope that the Diamox will help to keep the pressure down longer. Sometimes we get really lucky and the meds alone will keep the pressure down.
Just the fact that your vision improved with the fluid drawn off is a good sign. It does mean that if all else fails, a shunt would be able to help you feel better. (It is far better than having fluid drawn off and there be NO improvement).

Keeping my fingers are cross


Last edited by Wylee on Sun Aug 26, 2012 12:06 am; edited 1 time in total
Back to top Go down
medmisfit
Admin2
Admin2
avatar


PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   Sat Aug 25, 2012 2:24 pm

I agree..so glad you've finally found some relief!!! Wishing you a symptom free day..enjoy!
Back to top Go down
Sponsored content




PostSubject: Re: Savannah Clayton - Diagnosed August 7, 2012   

Back to top Go down
 

Savannah Clayton - Diagnosed August 7, 2012

View previous topic View next topic Back to top 

 Similar topics

+
Page 1 of 1

Permissions in this forum:You cannot reply to topics in this forum
www.ihaveiih.com :: Living with IIH ::   :: Women and IIH-
Jump to:  
DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
Protected by Copyscape Web Copyright Protection Software
Top Disability Websites
Forumotion.com | © phpBB | Free forum support | Contact | Report an abuse | Free forum