Hello, all. I’m wondering if anyone else was told they have everything but IIH? My eye exam shows bilateral optic edema, blurred and double vision, and nystagmus. The neuro-opthamologist, whom I’ve seen twice, has diagnosed me with pseudo-papilledema, even though my nerve fiber layer is thicker than it was at my first appointment 3 weeks prior. 

I’ve had a constant headache since January 3, and have been in the hospital 5 times for dizziness, severe head pain, and episodes of grayed-out vision. I have neck pain and stiffness, lower back pain, and, oddly, my legs are tingly and feel detached from my body. I’m 5’6” and over 200 lbs now, with a 30 lb weight gain since parathyroidectomy 5 months ago. I have lupus, diagnosed sleep apnea (even when not overweight), and a bleeding hiatal hernia from a pregnancy when I had preeclampsia, so I’m often anemic. My MRI, MRV, MRA, and CT scan were all unremarkable. No one has done a lumbar puncture on me.

My diagnosis at this point is atypical migraines, vestibular migraines, occipital neuralgia, hypertension, and anxiety. I have no history of migraines, anxiety, or any of the other things. The neuro-opthamologist says I should get an occipital nerve block. I’ve also been prescribed verapamil - with little relief. 

Am I off base in thinking I have IIH? I’m not looking to have it, but I am looking to end the symptoms and so far, I’m being treated like I’m crazy.

IIH is a known complication of Lupus.  as far as I am concerned, given your history, your doctors are NEGLIGENT for not doing an LP on you.  just go on Pubmed.  my aunt died of Lupus and my mother has antiphospholipid syndrome and what I think is atypical Lupus.  I have an ANA and one of the APS antibodies.  Lupus can actually present with IIH as it's only symptom.  the IIH symptoms have been present in multiple family members and my mother called it the family mystery disease.  I figured out what it was, no thanks to my doctors.  OSA was a major contributor: I went into remission after jaw surgery.  if you have known OSA, you might want to have a consult regarding this, although there are only 3 surgeons I know of who I would allow to do it.  are you on CPAP?  I could not tolerate it, and even after jaw surgery and remission, BiPAP gives me headaches.  the valsalva involved in having air blown in your nose can increase intracranial pressure, which is why I had to have the surgery instead.  my story is in the Successes section.  

you are NOT off base, at all.  your doctors are.  I would get a second opinion, as many as it takes to get someone to order the LP.

Hi Melissa! I'm sorry to hear you're having trouble, but unfortunately it's not uncommon. Many members are told they have depression, anxiety, or some random migraine/headache. The only way to confirm IIH diagnosis is the spinal tap. The opening pressure isn't as important as whether your symptoms improve once CFS (cerebral spinal fluid) is removed.

You could definitely have IIH secondary to Lupus, Thyroid, or Sleep Apnea, so you may want to gather information to take to your next appointment. Since the Verapamil doesn't seem to be helping, that would support a request for the spinal tap to confirm diagnosis before you commit to the occipital nerve block. Then ask for second opinion if your neuro-ophthalmologist isn't willing to comply.

I hope that helps, but let us know if you have any further questions or concerns.

Take care,
Julie

Thank you, both! Your responses encouraged me to get second opinions. Luckily, I was able to get in with a new neurologist tomorrow due to a cancellation. The new neuro-opthamologist is a little further out on April 17th, but maybe the new neurologist could refer me and I could be seen sooner. I’m just not buying that I have pseudo-papilledema, given all of my other symptoms. 

I have a cpap machine, but I’m not that diligent about using it because it seems to make me feel worse. Several times after using the machine all night, I’ve woken up with killer headaches. My current neurologist said if I use it 5 hours per night, it will help my “migraines”. He also said if I fail verapamil, we will try Botox. He defers to the neuro-opthamologist when it comes to an IIH diagnosis, and the neuro-opthamologist told me IIH is not possible without papilledema. I’d love to know then why I have bilateral optic disc edema, with normal intraocular pressure. 

On my own, I have started a low sodium diet, losing 15 pounds in 3 weeks. I also started taking lasix that was prescribed to me a while ago for occasional water retention. I’m trying to be careful with it, and eat a banana the days I take it, but I plan not to take anymore without doctor guidance. The low sodium diet and the lasix have really made the head pain more tolerable, but I’m worried I’m not getting enough sodium and messing up my potassium. Does anyone know how low daily sodium intake can safely go?

First, congratulations on the weight loss because that is quite an accomplishment in itself! I think the daily recommended sodium intake is still 2300mg/day for women under 50, but I would be leery about taking the Lasix because it could skew your test results..at least tell the neurologist and neuro-ophthalmologist that you've been taking it, so they can factor that into their assessments. Glad you were able to get appointments scheduled so quickly for the second opinions..please keep us posted!

I also had all the migraine medications and Botox treatment for "migraines and cluster headaches". When nothing worked, the neurologist sent me to a pain specialist. He listened to my symptoms, looked at the list of everything tried, and told me "you're shunt is overdraining". He gave me a new a referral to Cleveland Clinic and medication to help with pain until I got there..it did nothing, of course. The headache clinic there did an intake and said "you're shunt is overdraining" and promptly sent me to one of their neuro-surgeons. It was a long process, like years, but they did finally figure it all out. Hopefully your journey will go much more smoothly..just keep talking to different specialists until someone hears you!

Take care,
Julie

Julie, for your supportive words! 

I do have some updates. I saw the 2nd neurologist, who said I don’t really present with IIH, because IIH doesn’t come on suddenly. He thinks I may have New Daily Persistent Headache (NDPH), or migraines, and referred me to the headache specialist in his office. He also thinks, because I have lupus, that we need to rule out lupus brain involvement, and do a lumbar puncture. About the pseudo-papilledema, he said my neuro-opthamologist is one of the best in the country (he’s at a well known university hospital), and if he said I don’t have papilledema, then I don’t have papilledema. 

The same day, I heard from the original neurologist’s office, and his nurse told me since my vestibular testing showed nystagmus, the doctor has referred me to interventional radiology for a lumbar puncture. She also said he wanted her to pass on to me that there is only a 1 in 100 chance I would have IIH without papilledema, and that it is not his primary reason for ordering the lumbar puncture. 

So, I’ve gone from not being able to get a lumbar puncture, to having two doctors willing to order it. I’m not sure if I should stick with the university hospital, or go forward with the new neurologist, who is affiliated with a large community hospital. 

I don’t know if I have IIH. I just want to feel better. I wonder if I’ve always had some type of neurological problem. I recall when I was a kid, I couldn’t hang upside down on the monkey bars, or hang my head over the edge of my bed, or lay on my stomach propped up by my elbows without getting a horrible pressure headache. I couldn’t tolerate amusement park rides, either, because I became extremely dizzy, nauseous, and briefly blacked out.

Hi Melissa, thanks for the update! I guess when it rains it pours! LOL. If you're comfortable with the University doctors now that you've had a 2nd opinion that confirms what you've been told, then I would stay there. I'm glad they're doing the LP for whatever reason, as long as they get the opening pressure and confirm it's not IIH. I also saw a "renowned specialist for IIH" at one point and found he was using tests that had been outdated for years, so I think it really is just a matter of whether you feel respected and heard.

Your other conditions can definitely confuse things, but it seems like they're both trying to help you figure it out. There are just a couple things that still irritate me..1. you can very definitely have IIH without papilledema, and 2. you can also have IIH symptoms that change or occur all of a sudden. You may not realize you were having symptoms, but I was diagnosed after waking up one morning with huge holes in my vision so it does happen.

I also had some symptoms and diagnoses from childhood that make me think it was IIH, but so far the specialists are saying they're not related. I think they just don't know because there is so little research. IHRF and NASA are constantly doing studies, so hopefully some day soon!

The bottom line is you're making progress and people seem to be listening, so hang in there and keep doing what you can to relieve symptoms.

Take care, and please keep us posted!

OMG.  IIH doesn't come on suddenly?  sure it can, depending on the trigger.  and from what you say, you have had tendency to ICP headaches all your life.  that is not sudden.  I have seen docs at a pain clinic and they conceded to me that LASIX DOES NOT TREAT MIGRAINE.  if Lasix improves your headaches, that is from swelling in your brain, PERIOD.  if your neurologist is thinking like this, you need to eventually think of finding someone else.

not tolerating CPAP would be expected with IIH.  none of the doctors understand this.  NOT EVEN AT STANFORD.  to me this is another sign that this is IIH.  keep pushing forwards.  so glad they will do the LP.  just try to have it done under fluoroscopy by someone who does them all the time.  stop the Lasix maybe 3 days before.

after you get your LP results, which I assume will be at least borderline (over 20), then print out my paper and ask your sleep doctor for a BiPAP.  I think my paper is posted somewhere on this site, I will try to find a link for it.  it argues for BiPAP being standard for a person with OSA and IIH.  I got a letter from my sleep doc in order to justify it from the insurance company.  hopefully you will tolerate that better than the CPAP.  like I said, I had to do the jaw surgery because I could not tolerate the IIH meds and could not tolerate BiPAP or any other OSA treatment and was still ill at 126lb.  

fantastic job on that weight loss!

here:
http://www.ihaveiih.com/t1383-intracranial-hypertension-associated-with-obstructive-sleep-apnea-a-discussion-of-potential-etiologic-factors

my story
http://www.ihaveiih.com/t1168-i-m-doing-much-better-now

Thank you, both, for providing your stories and thoughts on my situation! Sophiasmom, I read your paper, and then scheduled an appointment with my sleep apnea doctor. The soonest I can get in is April 23, but I told them on the phone that I want to switch to a bipap machine, and I asked for a referral to another doctor within the department who evaluates apnea patients for alternative therapies, like a jaw device. 

It’s Easter Sunday, and I made sure to have a low key day, and I definitely skipped all the sugar, salt, and bad carbs, but I still have blurry vision, dizziness, and a pressure headache today. I’ve also had high blood pressure all day. Since I feel I did everything right today to avoid symptoms, yet I still feel the worst I’ve felt all week, I realize I have to keep pushing forward for a diagnosis.

good work Melissa, keep plugging along.  but this is something that is bigger than us.  it is a complicated problem and diet and exercise and vitamins just won't cut it with this.  don't feel bad if you did everything "right" and still felt ill.  I found that one of the biggest pieces was sleeping right.  and it's very difficult to figure out what that means for you.  my son also has IIH and he tolerates BiPAP and feels awful if he doesn't use it.  hopefully it will be the solution for you!  the tongue device that I used for some time that helped me, is now available without a prescription on ebay, for cheap.  mine was the aveoTSD but there are silicone tongue retaining devices out there that look just like it now.  I think part of how it helped was holding my tongue off my jugular veins all night.

Absolutely keep pushing, but Deb is right..a lot of things, including our physiology which they don't yet understand, affects our symptoms. The weather, sleep, food, activity, the list goes on and on. If you haven't already, you may want to consider keeping a symptom log to try to identify some triggers. There is an example in "Useful Guides and Print Outs" section (http://www.ihaveiih.com/t59-i-have-iih-symptom-log), but I just created a chart in my bullet journal and keep track of food, weather, activity in a journal format. Use whatever works for you, but it definitely helps. Once you have a better idea of what triggers your symptoms, we can talk more about how to relieve them.

I hope it helps!

Take care,
Julie

Just an update:  I finally had my lumbar puncture today - after months of waiting. The neurologist postponed my appointment with interventional radiology twice. I asked to see a new neurologist at the same university hospital and I was told it is a long process to switch so I decided to wait until after the lumbar puncture. I asked the neuro-radiologist today what tests would be run on my spinal fluid and he said the neurologist only ordered for opening pressure - no tests for inflammation, MS, Lyme, anything. I felt pretty good today before the procedure - no headache, no ringing in my ears, and I was worried my pressure wouldn’t be elevated when they tested it. A few days prior, I had just come through 3 straight days of the most severe head and neck pain I’ve ever had along with the worst dizziness and vision problems I’ve had. Today, my opening pressure was only 18. The neuro-radiologist said that doesn’t mean I don’t have IIH, because pressures fluctuate throughout the day. However, the neurologist sent me an email saying “no IIH, continue with migraine meds”. Any suggestions on what I should do now? I know the headache I’ve had everyday for 6 months is not a migraine.

That's so frustrating! The number doesn't matter as much as whether your symptoms improved once CSF was removed, but, if you weren't having any symptoms, you may not have noticed anything. It doesn't mean that you don't have IIH, but it does make me wonder what medications they have prescribed. I know that NOTHING helps my IIH symptoms, and I took everything including Botox injections for a "migraine" before they were convinced it was the IIH. It may still be a combination of things, but, if you have IIH symptoms that don't improve with meds, I would suggest a second opinion. Unfortunately, there aren't a lot of specialists out there that actually know what they're doing and you may have to see several before you find one that hears you.

Also, as a side note, they don't usually do any labs on spinal fluid when testing for IIH. They just want the opening pressure and drain off extra CSF to give you some relief. If you are concerned about other conditions, then I would ask for more testing or reasons that isn't a consideration.

I'm sorry I don't have a magic solution, but unfortunately there's not a lot of research or information out there so we end up educating our providers and advocating for ourselves.

Hang in there, and take care!
Julie

Julie,

I think the reason I didn’t have much of a headache before the LP, is because they had me stop eating the day before and stop drinking 12 hours before. I have noticed sodium, sugar, dairy, and even too much water make my head worse. I do think I felt better for at least an hour after the LP, but then I started to have head pain while I was lying on my back with my head on a small flat pillow. After 2 hours, I was discharged with instructions to lay  on my back at home for 24 hours. I’ve had a headache ever since. I was told to come back to the hospital if I still had a headache the next day, and I do, but I always have a headache, so I’m not sure what to do. 

For the migraines they claim I’m having, I have been prescribed verapamil, propranolol, and topiramate. Only the topiramate helped with pain but they quickly took me off of it because it made me stuporous. I have thought about asking to go back on it but taking it only at night instead. Because I failed 3 main line migraine meds, Botox is my next option but it will take a while to get insurance approval. 

Does anyone else have severe neck pain and stiffness along with the squeezing, pressure feeling in the head? The severe neck pain is new for me, and I’m also having painful pressure in my ears. 

I’ve been seeing a neurologist at the University of Michigan hospital for this, but I am considering trying the Cleveland Clinic or the Mayo Clinic, as I feel I’m not getting any help and things are getting worse. Has anyone tried either of those clinics?

Thanks!

haven't been there.
many of us with IIH have the ear pain you describe.  I have heard people complain of the neck pain.  some people have been told they have occipital neuralgia, with those symptoms in the neck.

the thing is, Topamax is an IIH med.  and Verapamil and Propranolol could help IIH also, by reducing the contribution to ICP from blood pressure.  

one thing you can do if they can't help you, is figure out any contribution from obstructive sleep apnea.  treating that can indirectly treat your headaches regardless of their cause.

Oh, I forgot to mention I had a new sleep study to determine if I have central sleep apnea in addition to obstructive apnea. The sleep doctor said I do not have central apnea, but increased my pressure from 6 to 7. I feel like my headaches when I use cpap are even worse. 

I was offered a nerve block for occipital neuralgia a few months ago, but the neuro-opthamologist told me to hold off unti after the lumbar puncture in case it turned out to be IIH. I have read here that a normal opening pressure doesn’t always mean no IIH, so I’m not sure what to do.

if your headaches are worse with the CPAP then that to me is an indication that you probably do have IIH.  the PAP creates a Valsalva which is a known trigger for intracranial pressure to increase.  when I was using a machine I could not use CPAP and had to use BiPAP.  My son with IIH is also better on BiPAP.  it reduces the expiratory pressure to reduce the amount of the Valsalva.  7 is a very low pressure.  if you have OSA then you probably need a higher pressure.  most sleep labs are not very good and will not be able to properly titrate you.  if you use the mask and you are not on the right pressure then I could definitely see you feeling worse with it.  I had to go to Stanford to get the right titration done.  just to give you a comparison, Stanford titrated me to 12-13 for an inspiratory pressure.  Las Vegas told me I didn't even have OSA.  having the mask on your face if the pressure is not adequate can increase your feelings of suffocation while you are sleeping.  

what I would do is suggest that since you feel bad with CPAP that your doc needs to justify BiPAP to the insurance company.  then get a machine that you can figure out how to change the pressure yourself, so you can play with it and see what feels best for you.  or if you can get to Stanford, go there.

Hi Melissa! Deb's right,  topimax (topiramate) is used to treat IIH and makes sense that your pressure would be lower. Specialists that know what they're doing usually monitor your symptoms following LP to see if removing CSF relieved pressure or not and that's how they confirm IIH diagnosis. My opening pressure was only 18 when I was originally diagnosed, but I had been on Diamox and my symptoms completely went away following the LP. My neuro-ophthalmologist had to fight for the diagnosis, but eventually the medications stopped working and my pressures increased so everyone agreed it was IIH.

I also had issues with CPAP giving me headaches and the specialist told me to get my headaches under control then come back. I didn't know about the BiPAP at the time, so just stopped going. I keep telling myself that I'll follow up, but having other symptoms now with the Empty Sella Syndrome that I need to address first.

I love the Cleveland Clinic! After 3-4 years of different surgeons, neurologists, pain specialists, meds, injections, and being told that my test results were normal so it was just migraines in addition to the IIH, a pain specialist finally heard me and sent me to the Cleveland Clinic Headache Center. They listened to my symptoms, ordered tests, and made immediate referral to neurosurgeon. The neurosurgeon listened to my symptoms and knew exactly what was wrong..the same thing I had been telling everyone for years! He told me that they stopped using these certain tests for this malfunction SEVERAL YEARS AGO because pressure varies with certain factors and the results weren't accurate. He scheduled me for surgery that day. Turns out I was having other issues with the LP Shunt and I needed some additional tests and surgeries over the years, but he was amazing. He unfortunately moved onto Johns Hopkins, so I'm just getting to know the new surgeon. They're very thorough and work with a team approach, so I would recommend them if it's feasible for you.