Hey all! I'm Deirdra 26 and new to the IIH world. I'm a mom to 3, well technically 4 as my husband has custody of his son from a previous relationship. Both my eldest child (boy) and my stepson are special needs. So, I have a lot on my plate. I'm from Connecticut and finding support and information and even doctors out here is next to impossible.

I have currently lost about 90% of my vision in my right eye and 20% in my left. While I was in the hospital (6 days admitted, but I was on and off in the ER for weeks prior to that) I had 2 successful spinal taps (14 attempts) and between the 2 and in a 48 hour window I had 50cc of fluid drained. I was told my vision would return. But it hasn't in fact it's gotten worse. At this point I along with my eye Dr fear that the damage is done. He recommends the shunt procedure but I cant even get a Neuro to take my case!

Im in pain daily and frustrated. Im almost out of some of medications. Although I am hoping my Primary Care will step up her game for me tomorrow and get on board in giving me refills until I can get a Neuro.

There's so much going on. Between my eldest mental illness and MAJOR regression, I fear he's about to be re-institutionalized. My step sons about to be removed from his summer program. I am having one of the badder days. I feel alone like no one who truly understands the pain involved in this!

My Husband and My Mother are HUGE supporters. And my best friend tries. But I am kind of sick of her "look at the positive" side.

I'm afraid to loose my vision. I'm afraid to look up the shunt procedure. I'm afraid to go to sleep at night. Hell I am afraid I'll pee my pants with the amount of water pills and LASIKS I am on!

I'm sorry I am rambling. Anyways. Hi! I'm Deirdra... Newly IIH.

hi Deirdra;
I grew up in CT, although I live in Vegas now.  I'm so sorry for all your frustrations and your vision problems.  where do you live?  can you go to Yale or to UCONN?  I would go to the most specialized doc you can find.  Boston or NYC if you have to.  have they considered optic nerve sheath fenestration?  can you find a neuro-ophthalmologist?  that might be best to do ASAP as the vision stuff can happen quickly.
I'm so sorry about your kids.  my son has autism, and he also has IIH like me.  I am convinced there's a relationship although his neuro says it's a coincidence.  just something to contemplate if your kids show any signs of IIH.  at lower ICPs the headaches don't seem to be as prominent but my worst symptom is brain fog.  if you grow up like that you wouldn't realize it wasn't normal and I could see it causing a lot of problems like we see in autism.  there's so much we don't know yet in medicine.
it's really hard to cope with this illness when no one else understands what it feels like.  I don't really expect to get emotional support from anyone in my life.  I feel like an alien on a strange planet.  my friends with IIH online have become very important.  so, we are here for you when you feel like you can't relate to those around you.  hang in there!  we all understand what you are going through.
Deb

UCONN cannot see me until END of September. Its where Hartford Hospital recommended I go. But the problem is my eye dr doesnt think my eyes have almost 2 months. Plus my pain is increasing. So, I am in the fight of my life to get into the Neuro Science Center at Hartford Hospital. Thats where I was admitted. BTW They were pretty awesome about my admittance. Until discharge. There computer holds NO info on IIH so my discharge PPW says Migraine headaches. How in the hell is that gonna help me?!?!

My eye DR Has given copies of my full medical record from the hospital. And part of my sight records. How I went end of March and got new glasses and my optic nerves were fine. Now they look so damaged that this looks like I've had the disease for a while. He also says I am past the point of optic surgery to save my eyes. He is recommending the shunt. Which to be honest I am terrified to research. I know though, I loose my hair. Thats about all the hospital explained to me about the shunt while I was admitted.

The pain is coming back. And I am requiring more and more of my "back-up" pain meds instead of my daily extended release pain meds. Plus I am also almost out of both. I pray my PCP will step up and help me today.

Is depression normal with this? I have a history of depression. But never crying. Just bummed out and lazy. I often find myself crying for what seems no apparent reason. My husband is being as supportive of that as possible. ESP about my fit about loosing my hair last night. But he is not a "crying thing" kind of guy. So I know its HARD and most of all FRUSTRATING for him.

TY for your reply and knowing the area.

Oh and UCONN doesn't offer emergency appts for post hospital patients. Although they do really want to use me as a teaching case because of the rarity of the disease. pardon my language but flip that. You can get me in sooner if you wanted me so bad.

Hi Deirdra, welcome to the group! I'm so sorry you've had such a struggle and it sounds like some bad information. For instance, I don't know of anyone that lost their hair from IIH or treatments. IF you end up with a VP shunt, they will shave a small section of hair. They usually try to put it under other layers of hair so it's not noticeable and it's about the size of a 50 cent piece. It's definitely nothing they needed to mention or freak you out about! You can review surgery section and useful guides/print outs for more information regarding the surgeries.

Diagnosis and treatment can be a long and frustrating process, so hang in there! They usually start with medication and look at shunt placement, if meds are unsuccessful. Depression is a symptom of IIH, and this process doesn't help. I'm not sure who is monitoring your vision, but they should be able to advocate for you if IIH is affecting your vision. That usually moves people ahead quicker than pain. If you're just seeing an optometrist, you may want to request a referral to neuro-ophthalmologist. They can start treatments and do have pull with most neurosurgeons familiar with IIH.

I will tell you that crying, although completely normal in your situation, will also make symptoms worse..try to distract yourself or just let the tears stream without sobbing. I know it sounds strange, but it helps..the more upset you get, the worse your symptoms will be. Deb is right..we've all been there and completely understand, so feel free to post any questions or concerns you have. We'll do our best to answer them!

Take care,
Julie

Thank you. I finally got an appt with a Neuro August 2nd. I'm thrilled. It's the DR I had during my admittance.

My eye DR is fighting my case and one of the main reasons I have the appt now.

I personally don't feel the medications are working the pain is returning slowly over the pain medication I am taking. Which in fact runs out Saturday. My Neuro suggested I go to the ER and get treated and they should allow me the refills I need until I see the Neuro. I dont know what to do. Other then I'm petrified to feel all that pain again. My PCP said to me "Well I dont know the disease so I am not going to treat you for it" and refused to give me refills just until the 2nd.

I dont know what to do. Im afraid of the pain. Im afraid of asking for relief help. Im just down right scared.

oh Deirdra, I'm so sorry.  you know, I went to med school at UCONN.  but it's been a really long time.  I worked with one of the neurosurgeons for a  few weeks but I don't know if he would remember me.  looking online I don't think he is there anymore.  if I can think of a way I might be able to help I'll let you know.  Aug. 2nd is just next week, but then how long will it take to schedule the shunt?  I am just confused because last I checked, imminent visual loss is an EMERGENCY.  has your ophthalmologist considered prednisone to temporize the situation?  I would think it would be on HIM to make some phone calls to make things happen to save your vision.

and yes, DO NOT cry.  hyperventilate and let the tears run down.  don't hold your breath or valsalva (like a grunt).  crying used to make me so sick for 24 hrs.  that is all gone since I had jaw surgery.  my story about this is on the IIH successes page.

yes, go to the ER if you have to.  try to not be too dramatic, be matter of fact and tell them your pain is a 10 out of 10 because the pressure in your brain is too high and your doctor is pushing for you to have a shunt.  a lot of us get treated like drug seekers so just be as rational as you can about it so you don't trigger the doc to think like that.  well we are socialized to think that, it's criminal I think.

and yes, I've noticed that the higher my pressure, the more I used to think about death.  ICP=despair.  when the pressure comes down, the feelings pass too.  it's a depressing illness but there is something about the pressure itself that does that, I'm sure.

Deb

I'm glad to hear they're able to get you in next week! I know it's disheartening, but you just have to keep fighting. Like Deb said, try to keep a level head and be very "professional" about it. Keep a daily symptom log that you can present to physicians. There's an example in the Useful Guides and Print Outs section. The more information they have, the easier it should be to diagnose.

Unfortunately, it's not out of the ordinary for primary care physician or even the ER doctors to refuse refills prior to appointment with a specialist, especially if they are just dosing you with narcotics. Have they started Diamox, Lasix, or anything to keep fluid down?

Different people find different tricks to help with the pain. I personally have a "sweet spot" that takes the edge off when pressure is up. I lay on my side between 45-60 degree angle and prop my side with pillows. You kinda have to play with it, but I know other members have found some relief. Hot and cold packs can help too. Everyone's tolerance is different, so also trial and error. I find cold packs on eyes and back of neck with heat on spine is most helpful for me. You can get other ideas from Alternative Therapies section.

I hope you find some relief soon, but definitely go to ER if it becomes unbearable.

Good luck!!!
Julie

oh, and I agree this shouldn't matter at all, but you might want to nix the pink hair before you go to ER.  you don't want the doc to form any kind of judgment based on that.  it's stupid because one of my best friends who is a neonatologist has pink hair.  but you don't want to take chances.  have your husband go with you, dressed conservatively.  docs look at everything critically when asked for narcotics.  if you could bring a white picket fence with you I would say to do that.  know what I mean?

Hello Deirdra, and  

The idea Deb gave you about the Cortecosteroids is an excellent one.  It is not a good solution for long term, but in the short run it just might give you great pain relief and reduce the inflammation of your eye disc.  If you need to find someone real quick (and I think you should), you may want to contact the IHRF in Portland, Or. and ask them for a referral for someone you could see this coming week.  Your number one mission right now has to be to save your vision.  If it has failed so much so quickly, don't wait any longer.  August 2nd is great, but that is just for a consult, not treatment, unless the doc actually sees how badly you do need immediate help and puts you into the hospital for immediate surgery.
Do not worry about hair loss.  Some people on facebook have reported that they think it is a symptom of IIH, but that does not appear to be the case.  As Julie said, the amount of the scalp that needs to be exposed for a vp shunt is small and generally easily covered.  Again, the goal is to save your eyesight.  I have a lp shunt (it's in my lower back instead of the brain, like a vp shunt).  Depending on the condition of you ventricles in your brain, that may be a consideration too.
Feel free to come on the site and ask any questions that you may have.  Sometimes, being patients ourselves gives us a much clearer understanding of IIH than what the doctors know.  And we are willing to share ;)

I am on 2000mg of diamox a day and I am on Lasix as well. I feel no different taking them but I am.

I just keep telling myself I need to get through this week. Just this week. Its only till Friday. Thursday is the day when I completely run out of meds so I am taking Thursday and Friday off work.

My eye dr is pestering the Neuro. He's extremely concerned with my sight.

Oh and I learned that here they shave about half of your head. SOOOOO, its on hubby's bucket list to shave a womans head. So Im gonna let him buzz my whole head prior too (If I am approved) the surgery. I know, Im a good wife. lol.  Unless of course they rush my case.

I have a friend who owns a craft business and shes making me a customized hip length wig. So, loosing my hair isnt that big of a deal to me anymore.

oh I hope it all goes well.  please keep us updated!
Deb

Half your head????? Oh My!! :shock: 

I do hope the doc is able to get you some meds to tide you over until your appointment.

Oh my gosh..I've never heard of anyone having that much hair shaved for VP Shunt! The people I've seen have just had a small spot and other hair covered most of it..maybe you should confirm what surgery they're planning for you..LOL

Sorry it's taken me so long. I started to rapidly to loose my vision. I was admitted and had a shunt placed. It's been 10 days now. My vision hasn't really improved. But it hasn't gotten worse. I lost half of my hair. And my shunt is in the top front right of my head. So I am completely bald at this point. Im rocking it though. Everyone says I have a cute head. I feel better since having it placed. Although, I still have a few high pressure symptoms and I still require pain medications.

Hopefully this will all settle down once your body adjusts to the shunt. Still keep a log of your symptoms it's always wise to keep an eye on them. got my fingers crossed for you that you start feeling the benefits soon.

Hi Deirdra!  I'm just catching up on your story, and I really hope the shunt will bring you relief and you'll continue to feel better as the days go on.  Keep us posted on how you are doing. *hugs*