So...hello! I'm new to the forum & still in the diagnosis process. in May after many ophthalmology visits and an MRI I finally saw a neuro-opthomologist who told me that I had papilloedma with visual field defects. I've intermittent severe headaches with whooshing tinnitus he said he was fairly certain I had iih and sent me on to the neurology dept. He also said it wasn't related to sle lupus. Anyway- I just had my first lumbar puncture- it took four attempts, by three different doctors - when they finally got it they said that my opening pressure - which was 18 (and totally blessedly normal)-was inconclusive because of the multiple taps they'd done. Omg. Seriously? Yee-ouch! Has anyone had this happen to them? Or heard that multiple attempts can lower the opening csf reading? It's been a wild year. I feel like a pincushion. To top it off, they lost the referrel for the neuro consult I was supposed to have, so I've just had a lp and no treating doctor yet. Eerk. Such limbo!

Hello Laynuh, and welcome to the forum.  It sounds like your group of docs are trying just not quite with the program.  Four attempts and with different docs!  That is uncivilized! I go to an Interventional Neuro Radiologist to get my lp's done.  She does it under a fluoroscope (kind of CT Scan) that gives them real time images as to where the needle is.  Much less pain, better and more accurate result.  

Many members see a Neurologist for their IIH, but others depend on their Neuro Ophth especially if they have Paps.  Were you given any meds to try to lower the intracranial pressure?  Many of us take Diamox.  Especially since your vision is at risk, please find a doc willing to take the lead in your case to make sure you are followed.

Keeping a good journal is often helpful as you travel aling this journey.  Keeping track of your office visits and results, meds tried, possible symptoms triggers, etc.  

Have a good look around the site.  There is a lot of good info available.  Feel free to ask and questions too.  We'll do our best to try to help.

Thanks so much for your kind response Wylee ~ I've heard about the guided lp procedures - I don't understand why they aren't standard practice. That was the only lp I've ever had, and by nature it's a pretty terrifying concept, but I can't help but think it wouldn't have been so bad if it had just been one attempt. It was disheartening to go through all of that to have them say it was inconclusive.

It's also kind of wild to have fallen in the cracks- with the consult referral having been accidentally deleted.
I just hope I didn't scare anyone with my story - I think it was just the perfect storm so to speak. There are a lot or good and caring doctors out there.

I've followed up and will hopefully get in to see someone in the next two weeks. I'll make sure to write up a history and list of questions before I do.

I think the thing is- I'm not willing to do another diagnostic lp and since my opening pressure was technically normal I'm not sure what my options are. They said something about how having the lp might make me feel better and that that in itself would be diagnostic -but I've got a low pressure headache... So I'm feeling pretty bad right now. Oof. Anyway, just wanted to say thanks. I'm confused and scared but glad this forum is here.

Ugh!  Low pressure headaches often are much worse than high pressure ones!  Just another reason to go to someplace where they know what the h*ll they are doing!

Here's another one for you:  NOTE TO SELF:  Insist on laying FLAT for 45 to 60 minutes post lp to give your body time to seal the hole(s) made during the lp to avoid getting any leaks.  Where I have my lp done, if by chance you do develop a low pressure headache while laying flat in the recovery room, they whisk you back to the fluoroscope and you get a blood patch to try to seal the leak.  They won't let you leave if you develop leaks.  In fact, my doc is known worldwide for her work with CSF leaks.  

What my doc does during an lp is record the opening pressure.  If it is borderline normal - high, she will remove fluid to see if symptoms improve.  For me, it was my ability to read without my glasses.  I could see the X-ray in real time clear as day.  If she added fluid (which she had done in the past) my head would feel like it was going to explode.  So, in that sense, yes, having a lp can reduce symptoms.  The "right" way to do it is to get the opening pressure, remove fluid, lay flat for an hour, kick start on diuretics (I wuld take my Diamox just as soon as I got into recovery) to help keep the pressure lower longer, and away you go.  

I don't know where you live, but please, try to find a more experienced team to help you.

If you had this done by a neuro-radiologist under fluoroscopy it would not be like this.  I would not rule out doing it again, to check.
regardless of what they said the pressure was, I would question the conclusions.
1) if they had you on your stomach and did not add the length of the needle, then your ICP was actually 24.
2) there are cases of people losing vision and having papilledema at what the docs consider normal pressures.
3) the borderline range for children is 15-25; meaning anything over 15 is not quite normal for a child.  I don't think they really know what normals are.  a very enlightening paper to read is one by Higgins, if you search PubMed for intracranial hypertension and chronic fatigue you should find it.  they showed that people with technically normal ICPs, had improvement of CFS symptoms just from lowering their ICP at LP.  and discussed that the techniques used to determine the normal range were biased by inappropriate assumptions.
4) there are cases of papilledema caused by obstructive sleep apnea in which the opening pressure while awake is normal, yet there are abnormal ICP spikes during sleep apneas.
5) if you in fact have Lupus, IIH CAN be a presenting sign of Lupus.  it can also be present in antiphospholipid antibody syndrome.  if you have Lupus or other signs of autoimmune disease, you should have a complete autoimmune workup including a hypercoagulability workup.  well you should probably have it anyway.

Good points, Deb ;)

thanks for the info-sophiasmom- that article is interesting-I was wondering if there was a possible connection with all of this-i had asked about it and was a little surprised with the neuro-opthamologist said there was no connection- he was more concerned with the prednisone taper i did and recent weight gain (which is legit too).
 
Im new to all of this-  I was diagnosed in October with diffuse connective tissue disease - presenting with pretty disabling inflammatory arthritis, fatigue, headaches..my rheumatologist said that he thought it was leaning into the lupus but I don't meet the 4 out of 11 on the lupus diagnostic criteria yet so the goal is to not let it progress. I am also positive for antiphospholipid antibodies. 

I take methotrexate, plaquenil, and daily aspirin. before the methotrexate, I was on prednisone for 8 months.

At the get go- my rheumatologist mentioned my headaches could be autoimmune related- and since I started these medications- my headaches- the frequency and severity have gone down. However, it was a severe headache in November (10 on the pain scale, vomiting, lost vision in one eye, when it returned-my vision was grayed out- like the contrast had been turned down, with flashes of light off to the side... ) that got me a referral to the eye clinic. they've been monitoring me for possible optic neuritis ever since. though, over time its started to look more like iih i guess.

I think the hardest thing about this last year is that I never present any of these conditions in a text book fashion though there is something obviously going on. so I end up being "observed and monitored" when id really like to just feel better. not having a pity party- i think that's a consensus for people for autoimmune disease- but I was really really hoping the lp would confirm or exclude something- and that's why it was so hard when they told me it was inconclusive. 

I've still got a headache from the lp but its a lot better- i'm back to work! and the CSF tests were -near as i can tell- unremarkable- though there was blood in them- i think from the traumatic tap.  I'm still waiting on a consult to neurology but I am seeing my rheumatologist on Tuesday, i have a feeling he will have some answers for me (fingers crossed). he has been out of town for the last month- so ill feel a lot better once i talk to him & ill post an update here. Ill really try to keep an open mind about further testing. lol.

Thank you for the update.  Please do keep us informed.

And, I understand the frustration of having the docs say wait and see.  Wasting time!!  might there be other docs in your area you can check with?  you really need an experienced IIH doc.

Thanks Wylee. I totally agree. I live in a rural area in California and have been driving 6 hours to visit one of the university of California's medical centers- it's a teaching hospital and I've seen some good doctors there. it's just this neurology department that's making me a little nuts, well actually, making me nervous. they have the referral but still can't make an appt for me. They have to have a meeting to determine who I'm going to see? Ugh. And they're booked out for ages.

I'm trying to be patient but it's feeling ridiculous. My rheumatologist is really on the ball so I'm hoping he will jump in and either offer me treatment or intervene with the neurology referral to get me in to see someone experienced with iih, and it's possible auto immune connections- I wonder if it's treated differently if it's autoimmune related?

I had a regular Mri but never had an angio Mri - so, I'm really hoping it's not a blood clot or something - I was reading online that the symptoms are similar.
I'm wondering if anyone had one of those done as part of the diagnostic process- or knows anything about that?

Also, I'm curious- if one has iih and has a lumber puncture- how long does the relief from the lp last?
I had a full day after the lp where I felt pretty good (no headache, clear vision) then I had a low pressure headache for 5 days which now seems to have faded out to a mild version of what my normal headaches are like -blurry vision, nausea, light sensitivity, eye pain with movement, hurts when I press on my temples -So I'm not sure if the lp helped

It's really kind of a shame.  I used to live in Cali.  First while up in the Bay Area, and then moved out to the Central Valley.  I got lost in Kaiser and didn't fair any better within UC system.  There are some brilliant doctors in Cali, just haven't figured out how to get to them.  

The relief from having a lp is extremely unpredictible. It takes less than 2 hours for the pressure to build back up on it's own.  That's why I used to pop a Diamox just as soon as I got into the recovery room to help keep the pressure lower longer.  Some people experience long term relief, others get a leak and it acts like a shunt to keep the pressure down.  It is NOT a dependable solution to IIH, nor should it be used as such (although some do).  Medication is most often the first thing tried.  You need to find a good doc, get a good, done right the first try lp, and close follow up.  I suggest you keep researching and find a better team to help you.  One good thing is that at least your Rheumi is in your corner!

hi Laynuh,
it sort of sounds like maybe the IIH is being caused by the autoimmune disease, and maybe you just appeared to present with it suddenly upon prednisone taper is because the prednisone was treating the IIH and the wean made it relapse.  I always get better with prednisone.  I feel normal on prednisone.  I also have had an ANA and antiphospholipid antibodies.  mine get better when I treat my sleep apnea, and worse when I don't.  like they can go negative when I'm on CPAP.  if you do have a hypercoagulable state, then it's suspicious that this could be related to the IIH.  there's a theory about clotting in the arachnoid granulations.  look on pubmed for a paper by Glueck, on IIH and PCOS and coagulation.  most definitely the work-up entails a brain MRV and I think a neck MRV.  this should detect venous thrombosis, which can occur in lupus.  your rheumatologist should be able to do the thrombophilia workup, and also make some phone calls to get you in to a neurologist ASAP.  maybe with the thrombophilia workup and your IIH possibly related to that, he can justify ordering the brain MRV/MRA himself.

a thought I'm having about this and your lower pressures..... if this is related to your autoimmune disease and you are treating this, then perhaps the meds for your AI disease are partially treating the IIH? 

so what are they planning to do about your visual field defects and other eye problems?  if you have any sleep problems I think it's important to consider that your ICP could be spiking at night with apneas.  it's been reported to occur.  the neuro-ophthalmologist should also be able to call to get you in with neuro faster.

Great suggestions Deb.  
Laynuh. although there is quite a bit of medicaleze, if you show your rheum her post I suspect he will understand.  Deb is a M.D. so she can relate to the docs in language we may not be able to. Her work on IIH and sleep apnea has been published so your docs should find her helpful.  She knows from what she speaks!  We are very lucky to have her here on the forum. ;)

Linda!

Sorry for the delay in response- I m finally back to my computer! just had my mobile last week and trying to type a update response on the two inch screen was making me insane. lol

The research into thrombophilia & IIH you cited Deb is very helpful- I could only find the abstract online but i did some more searching on thrombophilia and IIH and found it super interesting.

I think you are spot on- it seems like the meds from my AI disease are partially treating this- 
also, as a side note on sleep apnea-  when I was at my neuro-ophthalmologist appt in may, they were doing a study on sleep apnea and IIH, and interviewed me which was kinda cool.  I don't have any signs of sleep apnea but admittedly i don't know too much about it. 

I cant tell you both how much it means to me to have your feedback through all of this- its overwhelming and though i do as much research as i can-it helps me know what questions to ask- its a ton of information to sift through.  


So, I met with my rhuemie last week -It was a short visit- we only really get 15 minutes for office visits. he reviewed my csf results and said I have lymphocytosis (93% lympocytes in csf)he said it can be related to inflammation but didn't go much into it. He said i have mild livido reticularis due to the Antiphospholipid antibodies, upped my methotrexate to handle joint pain and when I asked him about autoimmune causes of iih- he said he would look into it further- specifically the antiphospholipid antibodies and invited me to do the same.
I'm going to forward the Glueck study on and ask him about doing a thrombophilia work up. 
I tested positive for Lupus Anticoagulant in October and have been on daily aspirin since. 

He also said that the longer IIH goes on, the harder it is to treat- he seemed a little frustrated that i hadn't been able to get in to see someone for this yet so he called neurology and got me an appt for July 29th! Making progress!

Excellent news!  Keep that rheumy on speed dial.  That is exactly what you need.
Sounds like you are headed on the right track.  

Gee Deb, someone doing a study on IIH and Sleep Apnea. The more the merrier!  Hopefully they will agree with Deb's findings too.  

Please let us know how it goes at your neurology appointment.  Have a really good read around the site, taking notes as you go.  Ask lots of questions.  You may want to give the doc a copy of the questions so he can follow along, too.

Dear Laynuh;
I also appear to not have OSA on the Epworth Sleepiness Scale, the standard tool used for detecting OSA risk.  this is because I have UARS, and insomnia.  but, my IIH was put into remission by the most invasive OSA treatment, maxillomandibular advancement.  you can read my story on the IIH Successes page.  you can read about UARS on my friend doctorstevenpark's webpage.  it has an entirely different set of symptomatology, and most doctors have never heard of it.  here's another clue; OSA is known to cause hypercoagulability and stroke.  I also have livedo reticularis.  there are many papers on PubMed on IIH and lupus and IIH and antiphospholipid syndrome.  did your rheumy order the brain MRV?  if not, I'm disappointed.  he should be looking for cerebral venous thrombosis, if he is treating your hypercoag.

Linda: re: the IIH/OSA study.  well.  the problem is it's not going to be a very good study if they think Laynuh shows no signs.  ALL humans show some signs, if you know what to look for.  until modern medicine understands this, we will remain in the dark ages of medicine.  we can decipher the entire human genome and still be no farther if we cannot look at basic human anatomy and see what is right in front of our faces.

Hi Deb, 
They didn't do a detailed workup or anything like that - it was just a little survey- almost like a poll-while i was waiting to see the dr-- an attendant came in and asked if she could ask me some questions for a prospective study- just really general ones-asked if i had sleep apnea, some questions about tiredness and asked what i was being seen for that day - that was it. 

We shall see what the rhuemie does- he was going to do some research and i emailed him yesterday to see what came of it all. Everyone seems to want the neurologist to treat me rather than taking pieces of it on themselves. With an opening pressure of 18 i fall into the technically normal range-even though there were a lot of pokes done - so i don't think i meet the diagnostic criteria and I'm just not sure what they'll do. I'm just trying to figure how to self advocate if they decide they just want to "observe" me. or how to navigate traveling down to have the tests done, the follow up visits... 

Traveling to all of these appointments, plus being sick so much means I've missed a lot of work and my supervisor just now gave me a heads up that I may be losing my health benefits because I'm not pulling full time and have exhausted my FMLA leave.  Im barely squeaking by- with all the medical bills, not making full paychecks and now having to somehow come up with an additional $700 monthly to do cobra... 

I know it could be worse, but I'm feeling pretty down right now.

Oh my.  Seems like you just can't catch a break.  I hope they are kind to you at work.

Thanks! Sorry, I hope I didn't come across as super doom and gloom. I really try to stay upbeat and proactive but sometimes I just feel so tired... sick of constant pain, sick of navigating the medical system. It's been a lot to deal with and looking at losing my benefits is terrifying but I don't want to let it dominate my life. There are so many beautiful and wonderful things out there. I need to focus on those and being grateful. It could be so much worse.

One of the benefits of having a site like this one is it is a place where we can come and vent.  Please, feel free to rant and rave, yell, scream, cry, laugh, rejoice...........I'm sure you get the drift.  We have been in your shoes.  We understand, all to well, what you are feeling as well as what you may be facing.  Never any need to apologize here.  

While it is wonderful to be able to keep positive and upbeat, it is no wonder that sometimes we waive a bit.  That's normal.  It's when you go into a deep depression that leaves unable to do anything, that lasts for many weeks that's the problem area.  

That's one of the reason for the emoji's.  Feel free to use them!

I know I'm late to the conversation, but just wanted to let you know there are cheaper "HIPPA" policies out there (https://www.healthcare.gov/glossary/HIPAA-eligible-individual/). I'm not sure how or if the Affordable Care Act has affected these policies, but you should be able to search for an insurance agent in your area that could answer your questions. I was also faced with paying COBRA at one point and ended up getting a referral for a HIPPA plan that cost me half. The most important thing is to not let your coverage lapse! Send me a private message with your location, if you have difficulty finding one, and I'll see what I can do.

I have been following the thread, but can't remember if anyone mentioned the "normal range" for opening pressures. I think someone did at one point but you made note of it again, so I'd like to clarify things a little. I want to start by saying a physician educated about IIH should only be using this range as a guide. Everyone's "normal" is different. You'll see posts where some members report there shunts are set at 9, while others are at 20..it's all relative. The defining factor in using the LP test is whether you found any relief from symptoms. I know it's difficult to tell if you've been poked several times and you're suffering from low pressure headaches, but, if done properly, people with IIH find relief from their high pressure symptoms. I just don't want you to get discouraged because of the numbers.

Being diagnosed and finding the right treatment can be a long, frustrating process. I hope you've been reading through the posts and have found your story isn't so different. We have all been there in one way or another, so are here to help. Let us know if you have any further questions or concerns, and please keep us posted on your progress!

Take care,
Julie

Thanks ~
 I'll post an update once i have the neurology appt- my rhuemie said that there is evidence of association between IIH and thrombophilia but it is a rare association and didn't order any further tests- I was hoping he would- but like I said, I have the sense that everyone I've seen is waiting to see what the neurologist does,  and since that appt is next week - its really not much longer to wait. 
I'm making a list of the things I should bring- will write up a history of symptoms and questions to ask. 
My work is going to get back to me this week about what they decide to do regarding my benefits. wish me luck!

maybe it's "rare" because they never order the tests to look for it therefore they never find it.  I'm convinced that's why IIH is considered "rare".  in fact I know many people who probably have it who have never been referred for an LP and won't even ask for one after I tell them that it sounds like they need one.   rare my behind.

lol2
rare my behind is right! I was thinking the exact same thing- I think I literally even said "harrumph" out loud when I read his email- Of course, any replies I make via the online chart system go into permanently into my medical file so I had to reign it in. lol.

I posted this thread on Twitter and so far have had one reply from Steve Campbell in Australia.


If I receive anymore feedback I'll post it.

Hi! Just a little update~ I had my neurology appointment today -I'm in the club now l(lol)  they've started me on diamox for intracranial hypertension. They mentioned that the autoimmune inflammation may be inhibiting the spinal fluid draining and causing increased pressure. Regardless, they said the treatment is the same- diamox. I have a sulfa allergy and the diamox is in the sulfa family... But not everyone with a sulfa allergy has a reaction to the diamox  so they're having me start at 500 mg for a few weeks (to make sure I don't have an allergic reaction) then I'll go up to 1000.  I'm really glad they decided to go ahead and treat me rather than running more tests and observing me. Thanks so much for walking me through all of this - I was more than a little freaked out!

What great news!  A diagnosis with possible cause.  Yay!

I, too, am allergic to sulfa druga but am able to tolerate Diamox with no allergic reactions!  Good they are starting low and slow.  It will give your body a bit more time to get used to the possible side effects. Primary one is tingling in the hands and feet.  Doesn't happen to everyone.  But, just in case.....

I so hope that works for you.  I also am allergic to sulfa and could take Diamox without any allergy symptoms.  it was just that as with 90% of other medications, Diamox caused unacceptable sedation.  it was as bad as the symptom I was trying to treat.  if you already took a dose and could get on the computer, then hopefully you will be fine with it!

Well, I didn't do so good with the Diamox- I wanted it to work but it made me so sick.   I never even got up to the dose I was supposed to take. Aside from the common side effect of tingling in my hands and feet i had horrible fatigue, joint pain, balance issues, muscle cramps, malaise. I looked so bad that one of the directors at my work wanted to drive me home because she was worried about leaving me in the office by myself in case I collapsed. which was really awkward.
 
So, I quit taking it after 5 days. oof. I feel like a wimp but I really did feel a million times better about a day after quitting.

I just emailed my neurologist, maybe there is something else i can do/take?  though i think the diamox is about it, right?