Hi everyone, my name is Ashley. I'm 27, Canadian, married, and I'm here to bum you out. 

Yesterday I was tentatively diagnosed with IIH. They'll be running more tests to confirm that it's not actually SIH but since I fit the general "criteria" (woman, child-bearing age, overweight, on birth control) the most likely scenario is that I've joined your club.

Two weeks ago I woke up with a horrible headache and a sore, stiff neck. I was sick the night before and was actually on (a terrible) vacation in an air-condition-less house so I chalked it up to pulling a neck muscle by sleeping poorly. I spent about three days sobbing like a baby and seriously contemplating suicide but then the symptoms began to dull. My grandmother died that Saturday, symptoms got worse for a bit, then again began to dull.

Exactly one week later I had a blind spot in my right eye. I panicked. I also have type 1 diabetes (aka juvenile diabetes) and thought I had damaged it with high blood sugars, despite mine being well-controlled. I went to the hospital and after seeing several opthamologists and going through several tests they could see nothing wrong - "perfectly healthy eyes". I was confused, but relieved. They scheduled a follow up for yesterday. 

Ah, yesterday. I went through more of the same and some new tests yesterday. The first doctor found a very small hemorrage on my left eye - the eye opposite that had the blind spot (which had not gone away, but gotten a bit worse the Friday before when I had to have my ferret put down and grieved terribly). She immediately called it diabetes-related and again, I panicked. A more senior doctor came in though and said that he could see minor swelling in my optic nerves. He called in a neuroopthamologist who confirmed, and I think (thought I'm not sure because they were speaking French and my French - especially medical French - is pretty rusty) they decided it was papilledema. 

The senior doctor then explained to me that, because of my stubborn headaches, continued neck stiffness, and occasional "whooshing" sound in my ears he was quite certain this was IIH. He didn't tell me much about it, just that I don't have to be scared (yeah right! easier said than done) and they are booking me consults with another neuroopthamologist and a neurologist. They did a CT scan and, as it was nearly 7pm and the clinics were shutting down, sent me home. 

Now I wait. I've been googling non-stop. I can't help it. I'm addicted. I'm terribly anxious, which is making the symptoms worse I think and makes it difficult to eat. I've already began a restrictive calorie diet. 

But I'm scared. I'm so, so scared. And I feel so alone. 

My husband and I wanted to start trying for a baby next year. That seems even scarier than it was before. 

I'm afraid to lose my sight. My livelihood depends on it, and I don't think I'm eligible for any kind of disability insurance because of my pre-existing condition. How can I assure my family is taken care of if something awful happens? 

I don't know what I'm asking for here. I'm just so scared and sad and maybe I'm being selfish and just looking for comfort from others who have been there before me. I feel hopeless right now and like I'm about to become a burden on my loved ones. I don't want that. I really don't.

Anyway, when I'm less blubbery I promise I'll make a better impression. Hi again, and  for letting me part of your forums 

hi Ashley, I'm so sorry about this health scare, it must be worse on top of having the diabetes.  hopefully you can get an answer tomorrow about the CT scan?  it sounds like they need to get a spinal tap, are they going to schedule that?  hopefully they will be able to make the diagnosis with that, confirm the IIH and the reduction in pressure at the LP may help you feel better acutely.  it sounds like you have some good specialists involved, stay with the neuro-ophthalmologist!  if they can get the pressure down then hopefully your blind spot will go away and you will get a handle on this and not have to worry about losing your vision.  my ICP was 23 and I never had papilledema.  but it's hard getting a doctor to believe that the ICP of 23 is real, without papilledema.  without what they found, you could suffer with the other symptoms without treatment, unless you find a doc who actually knows something about IIHWOP, which most don't.  given your other risk factors for visual problems, I wonder if the neuro-ophth will recommend ONSF to take the pressure off your nerves.  
have you noticed if crying makes your symptoms worse?  crying is a Valsalva maneuver which can increase ICP.  I would get an instant ice pick headache if I started to cry, before I went into remission.  I had jaw surgery for my obstructive sleep apnea and after that I felt so much better, and my ICP dropped to 14.  that's how I know for sure that the 23 was real.  some of us have OSA as a cause or a trigger for the ICP.  the fact that you woke up with your headache is suspicious.  if you have any sleep problems, it's something to consider.

I don't know if I am making you feel any better, but maybe just a little less alone.
hang in there!  you will figure it out, just keep asking questions.  make sure they treat your blind spot as an urgent issue, don't let them delay the testing and treatment.

Deb

Hi Sophiasmom, thanks for the response!

Crying definitely seems to make my symptoms worse, BUT I was always the kind of person who got bad headaches from a lot of crying. My anxiety makes headaches and nausea worse, as well, plus just adds unrelated symptoms. 

After I left on Monday they said they would call me with my appointments and that those appointments would be within 1-3 weeks. I haven't heard back yet, should I be worried? They said they wanted to see my scan results before prescribing me medication just in case there is something there that contraindicates what they would give me, but the radiology tech said it would take like two weeks for them to get the results. Is that too long? I'm quite certain he said it was very mild papilledema, I think they could barely see it, and when I went the week before they couldn't see anything. 

I just recently moved to this province (and actually back to Canada after six years in the US) so I'm so confused... I don't know who to call and half the time the person who answers doesn't speak English so I stumble over the conversation :(

My headache is very mild today, and visual symptoms are unchanged - still good field of vision, no blurriness, just the same main spot and occasional other spots/squiggles that seem to go away (they seem to manifest after moving or after looking at something bright).

Oh, I forgot to mention about the sleep apnea: I was tested for it about three years ago at a request by my PCP. The test was that they sent me home with a dongle that attached to my finger all night and then the next day it was picked up. Results from that suggested no sleep apnea but I have no idea how conclusive that test is.

home sleep studies are useless, and in my opinion most sleep labs are useless.  my son and I had 4 studies between us at 3 sleep labs in Las Vegas and they were all negative.  we went to Stanford and they found it, and treating it made all the difference.  so, yeah, I don't make anything of that home test you had, means nothing to me.  if you were tested then there was a reason, and I would be suspicious that they missed it.  if you are being diagnosed with IIH then they need to rule out secondary causes, one of which is OSA.  I think this warrants a better sleep study.

I don't know how they do things in Canada, but here the CT should have been read by today.  if there is delay in getting results to you it's happening at your doctor's office.  you may need to keep calling.  people with IIH have lost vision even without papilledema, so the mildness of it is not the issue, the fact that you have a blind spot is the issue that requires a faster response than 2 weeks.  call the neuro-ophthalmologist and keep asking about the blind spot and when will you have the LP?  friday please?  I would insist on the LP before they prescribe anything.  if nothing else, it may relieve your symptoms for awhile and help the meds start working faster.

where in Canada are you?  I have a friend with IIH in Edmonton.
Deb

To be honest, I'm not sure how things work here either! I'm in Quebec (Montreal, specifically), which is a province I've never lived in before. I moved here from Pittsburgh in July and I've just been completely lost through this whole process. I was referred to the opthalmology clinic via ER when I went there for my eye spot, so I don't even have one specific doctor, I'm just in the care of the clinic. I don't have a family doctor here yet and I'm not even able to look for one until October because of the province's three-month waiting period. 

I called the clinic yesterday and they said they would leave a note for the doctor who saw me, but they were very rude. I'm incredibly disheartened by this, I have absolutely no other doctor I can call here as far as I know. If I could go back to Pittsburgh to be treated this instant I would but I have no way to get there and no place to stay once I'm there.

I just got a call from neuropathy and they have booked me in for an LP Monday morning at 10am. I'm happy, but now I'm scared because I just realized what they'll be doing 

Hi Ashley! Sorry I'm late to the post, but welcome to the forum. You're at least in the 3 month waiting period, so you've signed up for Quebec First and hopefully have private insurance to cover costs in the interim (OmbudService for Life and Health Insurance-http://oapcanada.ca/). Unfortunately, that is the extent of my knowledge. Hopefully one of our members from Canada will read your post and be able to advise you on who to contact for questions. I know you're just being treated at a clinic now, but they should keep records for others. You may also want to see if you could request someone specific, if treated by someone you like.

The best advice I can give you for the LP is to try to stay relaxed. I know it's unpleasant, but usually goes better if you can keep your muscles relaxed and keep breathing. That sounds ridiculous, but I tend to hold my breath when I have discomfort or know something is coming. I try to close my eyes and just focus on my breath. Some members also ask if they can wear ear buds for favorite music or request an anti-anxiety medication if it's really bad. They usually have someone comforting/checking on you throughout procedure and numb the area before giving any shots, so you should just feel pressure after initial sting. If your IIH symptoms get better once they've drained some fluid, that usually confirms it's IIH.

Anxiety, stress, depression, sinus/allergies, bending, straining (sneeze, go to bathroom, lifting, etc) all increase intracranial pressure (ICP) and make symptoms worse. Members have also found processed foods, sleep, weather changes, traveling, altitude, chemicals, and a myriad of other things affect their symptoms. I would suggest keeping a log to track symptoms. I started using a bullet journal and use it for EVERYTHING! IIH and the treatments affect everyone differently, so it's a bit of trial/error to learn triggers and find things that help. Let us know if you have any questions and we'll do our best to help you through it!

Keep us posted on LP and take care,
Julie

Hi Julie,

Thank you for responding  Unfortunately I do not have health coverage in the interim - I have my American health coverage which covers emergency care only, so this is coming out of my pocket. I called and pleaded with the Regie (who is in charge of health here in Quebec) but they are firm that the rules are that you must wait three months. My official coverage begins October 1, so hopefully nothing too terribly expensive happens until then. If I were still eligible to get interim coverage, I absolutely would but through the craziness of moving it completely slipped my mind. I've really been beating myself up over it. 

I may ask for some anti-anxiety meds, or mild sedatives - I really hope they agree. The funny thing is I'm not very bothered by the possibility of pain, my anxious mind just has all kinds of scenarios popping into it like that I'll jump when they do it and become paralyzed, or something will go wrong and I'll die. My mind likes to bring me to the dramatic side of things :(

I will try to keep notes on symptoms - do you just write freely or do you follow some sort of rubric?

great!  I'm so glad you got the LP scheduled and it's only a few days away.  try not to worry about the LP.  you can get through it no matter what, and you won't be paralyzed!  I've had 3 and my son 4.  he got to sleep through his.  I never had any problems with mine.  it's less of a big deal than some people make it out to be.  sometimes people have a leak afterwards and need a blood patch, for persistent low pressure headaches.  avoid aspirin and ibuprofen for now until you have it done.  hopefully you will feel better afterwards and maybe that blind spot will go away.

Your physiology, overall health, frame of mind and a myriad of other factors can all affect your LP, so it varies from person-to-person and tap-to-tap. I personally have had good and bad experiences, but mostly ok and nothing that has caused any permanent damage. I would avoid the Internet, if you already have anxiety..it looks HORRIBLE, but they really do try to make the experience as tolerable as possible.

As far as the journal, I use symbols to mark different entries. For instance; you could use a triangle for food, circle for medications, square for symptoms, etc. It just makes things easier for me to find, but you can set it up however makes sense to you. Here is a link to our sample symptom log http://www.ihaveiih.com/t59-i-have-iih-symptom-log. I hope that helps!

Good luck with the tap, and please keep us posted!

for my diary I put the date, then listed any factors that seemed pertinent that day, with diet, meds, vitamins, exposures, activities, and airway control in sleep, and what my day was like in terms of symptoms.  I was trying to figure out the patterns to what made me ill.  I had years of this diary when I figured out that I had IIH: I'd been keeping it while I was ill but didn't know what was wrong.  when I started thinking about having jaw surgery, I was able to go back and analyze long stretches statistically, to determine the contribution of airway control to how bad my day was.  I found a positive correlation and decided on the jaw surgery in large part based on my ability to objectively measure this relationship.  the jaw surgery put me into remission.  the diary may not seem to do much for you now, but over time it may become very valuable.  it is something you could show your doctor if you are trying to argue for a certain approach.  it is one thing to make a statement and expect your doc to take it at face value, vs. having a diary with a statistical analysis to prove to your doc that what you say is true.  it's hard enough to get them to pay attention to us.

Thank you so much for your responses ladies! I've been struggling emotionally the past couple of days, but my mom arrived yesterday and her support combined with my husband's has been really nice. I'm hopeful for my LP tomorrow... maybe too hopeful, but I can't help it, haha. 

I woke up in the middle of the night last night and felt strangely wonderful! No pain, which I can't remember the last time I've been totally pain-free. I got a little ahead of myself in my happy, sleepy state and thought maybe the very few pounds I've lost had put me into remission. Unfortunately when I woke up for real my headache returned... but it was nice while it lasted

how did the LP go?

It got pushed to today (the doc who was scheduled to do it yesterday called in sick). Anyway... I just got home from it. It was unsuccessful (oh, and they don't give sedatives or anything for adults).

They tried multiple times, in between different vertebrae. At one point she did make it but hit a blood vessel which compromised the fluid. After I left I was surprised to see blood everywhere, splatters. She sure did hit it! I didn't know that could even happen. I have to go back to do it with radiology so they sent me home. So here I am, sore, waiting for a call from radiology.

oh, I'm so sorry!  they should have started with radiology.  that ought to go fine, I've never had it done any other way.

I just got my appointment for LP through radiology booked, it will be tomorrow morning but they said they don't use any anaesthetic in radiology so now I'm freaking out :( I won't have anything, no freezing, no sedatives, omg I'm terrified...

I had a headache for about 4 days after the LP. I was really bummed out because I didnt realise the procedure could lead to that. I had to stay flat in bed all 4 days.

Doctor just put me to sleep during my LP after anaestetic. Im not sure how an LP can fail? Do they just not have experience with the procedure or is it different body types where its harder to get the needle into the right spot?

My first one failed because she was not using any imaging equipment (going in blind) and missed 5 times before giving up.

My LP today was successful! Hooray! Opening pressure was 42, brought it down to 13. I'm home laying in bed now. I feel pretty good right now to be honest - not perfect but good. Better than most days.

yay!  well, not so much on that pressure, that's pretty darn high, no wonder you were miserable.  but hey, no one can deny the problem now, and I hope your vision is doing a bit better?  how was the LP experience this time?  I'm so glad you are feeling better.  my ICP is 14 now in remission after jaw surgery.  my son still lives at 23, and when he has an LP bringing him down to 14 he will not stay in bed, he is so elated to feel better that he wants to play and run and dance and sing!  zero post tap headache for that boy.  but the doctors won't do anything to treat his baseline of 23, they say no treatment is indicated unless he's at least 25.  I consider it criminal medical neglect, it makes me so angry.  anyway, let us know how you are doing today, how long your reprieve lasts.  my son seemed to go back to baseline within 2 days.  the one thing that really helps him is osteopathic manipulation.  he says it makes him feel the same way he does after an LP.

I'm sorry about your son, that's awful that they refuse to treat him! Where does someone typically get osteopathic manipulation? I haven't heard of it before. 

My vision was doing better for a day (as were my other symptoms) but only in certain ways. I felt like I could focus again, my eyes feel like they "jump" around on their own to my own pulse so it makes looking at things tiring. My spots didn't go away but did seem to get a bit better. The LP itself was great compared to last time, few pokes, some pressure, but none of the pain. 

I go to see the neuro-opthalmologist on Tuesday and I'm both scared and excited. I want treatment. I want to get better. I want to feel like a person again, and be productive. But I'm also worried about what my new eye exam will reveal. When my spot first occurred they couldn't even see any papilledema, then 5 days later they could see it plus a hemorrhage. It's been two (or is it three? I can't even remember) weeks now. I want to keep my vision. I'm so scared I'll just wake up and be blind.

EDIT: Also, the more I read about this disease the more confused I am about my blind spots. All the descriptions say people have "transient" spots that come when they move or change position and fade shortly after. Mine have been here weeks.

you might be able to find someone using a search tool on cranialacademy.org.  not all osteopaths can do what my son has done.  you have to find someone who does the manipulation in the cranial field, almost 100% of their clinical time.

I'm so sorry about the visual stuff.  I really hope they are catching this in time and that you can reverse most of your vision loss and keep it from progressing.  ask the doctor about ONSF, it might be a good option for you.  you have other symptoms that appear to warrant using medication to decrease your ICP, but the ONSF might acutely take the pressure off the nerve and ease your mind about the visual stuff.

Its pretty scary.... Do you see light spots or black spots?

I think vision loss in at a snails pace in my case. I only get 30min spots and light streaks about twice a month for a few days.

The scariest thing for me atm is losing my job.

How safe is ONSF? I'd hate to lose vision in my eye entirely.

It's hard to describe my spots. They are dark when I am looking at something light, and light when I am looking at something dark. Sometimes they glow, as if I had been looking at a bright light and suddenly looked away. Sometimes they are entirely opaque and others I can see through them.

Mine are mostly like I've been looking at a bright light and they are dots and lines with a bright lining around them.

Before a giant migriane it seems like my vision is torn in half like a tear through a piece of paper with crystally kinds of diamond shapes in the line.

Your spots sound like my spots. When I went to the eye specialist the first time I had a similar line in my vision along with multiple spots, constantly, sometimes lighter and at other times blocking my vision completely.

Atm I just have one annoying spot in my left eye that appears when it wants to. Its as jou say, sometimes dark and sometimes light.

I was just asking because the haemorrhage can also cause completely solid black spots, which are drops of blood.

I've never heard of anyone having a problem with ONSF.

Nami, make sure you utilize FMLA for any time you need off.  this protects your job.

Hmm I'm not from US. We take out private life cover. Part of this is disability cover for known illnesses and conditions. With IIH I have to prove that the condition is having a severe impact on my functioning at work before I can be boarded. This means I get a portion of my salary while staying at home.

Sickleave at my job is 18 days per year, and if I take more leave its normal leave, and if all my normal leave is used I get unpaid leave. My boss is ok with everything, I'm just going to end up with a lot of unpaid leave. That is if I can still actually do my job. Its really hard to concentrate and Im an engineer.

oh, I'm sorry.  where are you?

many of us are on disability because IIH does have a significant impact on our ability to function at work.  for me I was getting sick at work constantly because of chemical exposures that increased my ICP and other effects.  there is no work environment that is safe for me.  but I know many with IIH who can't get to a normal baseline and just can't function due to pain and memory and concentration issues.  if you describe your level of functioning completely I bet you would qualify.

South Africa

Oh man my husband said he doesnt believe in illnesses where they cant identify a cause and he says there is nothing wrong with me. Its kind of frustrating living in a world where nobody understands...like I'm faking my migraines and elevated brain pressure and blindness. I joined a facebook group called 'living with iih'. Its the only place I know where people understand..