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 Not diagnosed yet, anxious, seeking feedback.

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lolajay
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PostSubject: Not diagnosed yet, anxious, seeking feedback.    Sun May 07, 2017 7:14 pm

Hi everyone,

I'm making a neuro appointment this week, so hopefully on my way to some concrete answers. In the meantime, I wanted to post my history here to see if any of you experienced folks has any feedback/advice for me.

I'm 34 and a mom of two. Not overweight. Have had about ten years of bothersome symptoms, the most notable being VERY persistent nausea, mystery vision issues that have been chalked up to "ocular migraine," transient strong pressure in my head when I lay down on my stomach, on and off headaches, and a lot of dizziness or "off balance" feeling that comes and goes. Also panic attacks and an extremely sensitive nervous system, and mildly elevated blood pressure (not constant).

I had an MRI back in 2011 and it was "normal" except they DID find that I have an empty sella. Now from what I'm reading, this finding may not have actually been inconsequential as it can be an indicator of IIH? My doctor at the time didn't really seem to care about it and nothing was investigated further.

My visual symptoms:

Gradually increasing, *permanent* silvery "blotches" in my peripheral vision (sides and bottom) in both eyes. My visual field test several years ago was normal. Shimmering in peripheral vision that comes and goes. The past couple weeks I've been having a new symptom, which is what prompted me to "reopen" this case -- I'm experiencing some light intermittent flickering in the bottom of the visual field in my right eye. Like a very mild, soft flash in the same spot occasionally throughout the day. This has been accompanied by a mild intermittent headache in the back of my head and in my eye sockets.

I had a dilated eye exam the other day and she said all looks normal. No swelling. But pressure a tiny bit high. I'm going back for a visual field on the 22nd but I hope to have seen a neuro before then.

I had kind of resigned myself to either being crazy or just having some kind of unsolvable issue, but now with the new vision thing I started combing over my history and remembered about the empty sella...

I guess I'm asking if anyone here thinks I'm barking up the wrong tree, or if this does indeed sound like it could be IIH. I can live with the symptoms, but I would REALLY like to have some answers. I just want to know what's going on so I can get back to focusing on my kids and husband, and my art and hobbies.

Thanks so much for taking the time to read this!
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Mon May 08, 2017 5:01 pm

First, I guess I'm wondering whether you've been evaluated by an optometrist, ophthalmologist, or neuro-ophthalmologist in reference to your field tests?

Second, empty sella can be a condition all it's own, so I wonder if they diagnosed you with empty sella syndrome at the time..did they give you any medications for migraines, etc? Did they seem to help??

IIH affects everyone a little differently, so you can have it without papilledema, headaches, or visual disturbances. A typical case, if there is such a thing, would have either vision loss and/or headaches with or without papilledema. You also don't have to be a woman of childbearing years or overweight..it affects people of all ages, genders, sizes. Usually people with IIH talk about holes in their vision or having tunnel vision, swooshing in their ears, and pressure headaches. Symptoms tend to get worse when bending over or doing anything that causes strain like going to the bathroom, coughing, sneezing, etc. Also, tend to get worse when laying down. If symptoms get better laying down, it's probably low pressure or something else.

IIH can be secondary to other conditions or contribute to other conditions, so it's best to get it checked out. It definitely sounds like something is going on. Please keep us posted!

Take care,
Julie
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Mon May 08, 2017 10:28 pm

I would definitely pursue the IIH diagnosis.  you may want to see a neuro-ophthalmologist to get the all clear on your optic nerves with those symptoms.  I have IIHWOP, my nerves have always been fine.  I had the "ocular migraine" symptom until I started treating my obstructive sleep apnea, then that went away and when they measured my ICP finally it was 23 and some docs think that's not high enough but it is.  my ICP came down to 14 after jaw surgery for my OSA.   I was still sick when thin.  anyway, try to see a neurologist at a good university medical center and ask about IIHWOP.  the ophthalmologists won't know what to do with you if your exam looks normal, although they should address the visual symptoms somehow.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Wed May 10, 2017 7:30 pm

Hello and thanks so much for your replies. Smile

I will see the neuro on Friday and I'm definitely going to ask if we can do the tests to rule this out. I really think it might be at the root of my problems.

medmisfit, to answer your questions -- No, they never gave me meds or anything. They just said everything looked normal and sent me away. I did see a neuro-ophth too, once. The tests I was given were fluorescein angiogram, OCT scan, retinas photographed, and visual field test.

My symptoms don't seem to get worse with straining or bending. But I have had pulsatile tinnitus in the past. I had it for many months on and off when I was in college. Whistling/whooshing sounds. I can also see my pulse in my vision sometimes, just like a shadowy pulsing along with my heartbeat. Ever since the eye symptoms started I've had on and off transient shooting aches around my eye sockets. Sometimes it feels slightly sore when I look from side to side.

I am seeing a regular neuro on Friday. He has good reviews and people say he is inquisitive with a good bedside manner.

When I combine my history/symptoms with the empty sella finding it just starts to seem a bit too coincidental.

A couple quick questions:

Is IIH at all associated with large head size? I have an off-the-charts head circumference. It is familial -- both my kids are also >100th percentile.

I live in the Los Angeles area -- are there any known good docs for IIH here in the western US? I would be willing to travel.

Also, just seeking a little reassurance to ease my anxiety.... an actual brain tumor would typically present with much more dramatic symptoms, right? Since my symptoms are all kind of ongoing/evolving, that's a "good" sign, no?

One last thing I should mention, though there's so much controversy surrounding this that I don't know what to think anymore... I do have a history of tickborne illness. I have tested positive for anaplasmosis/ehrlichia and igenex positive for past Lyme infection. I grew up in Lyme-endemic Chester County, PA. My whole family has had tickborne illness and both parents have autoimmune diseases. It is all such a confusing mess.

Thanks again for reading, I really appreciate it. I feel very lost in all of this, especially after so many years with no help from doctors.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Wed May 10, 2017 8:41 pm

Just a couple other thoughts that occurred to me --

This current "flare" happened on the tail end of a really bad virus and tonsillitis. My son brought Hand Foot and Mouth (coxsackie virus) home from preschool and we all got it. I was exhausted, achy, sore throat, etc. for a full month, then got a bacterial tonsillitis (not strep, took Clindamycin for it) on top of that. Do these types of infections ever trigger flares for people?

I also see people mentioning avoiding vitamin A when I read about IIH. I noticed something really strange, years, ago, that I couldn't explain. I feel like my symptoms get worse when I use topical retinoids on my skin. Could this be the reason?! It is the strangest thing. It's to the point where I check all skincare labels for retinol/vitamin A because I've become gradually convinced that it doesn't agree with me when I use it over time. I also can't tolerate multivitamins... maybe this is why?

Sorry for the flood of questions!
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Fri May 12, 2017 2:24 pm

I'll be interested to hear the outcome of today's appointment fingers crossed
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Sat May 13, 2017 7:09 pm

hi;
retinoids are a known cause of IIH.  Accutane can do it.  I think the topical retinoid association you have noticed may be real.

I think there is an association of the kind of retinal symptoms you describe with Lyme.  a friend of mine saw a neuro-ophthalmologist at Johns Hopkins who was interested in this.  this may be worth pursuing.

many people here with IIH also have autoimmune disease.  Lupus can present with IIH, and the antibodies associated with antiphospholipid syndrome are associated with IIH.

tonsillitis makes your tonsils swell.  swollen tonsils cause sleep apnea and make it worse.  sleep apnea causes IIH and makes it worse: apnea increases ICP.  if this illness flared after a tonsillitis then getting checked for sleep apnea may be important, regardless of whether IIH is involved or not.  even if your tonsils have gone back to what you think are normal size.

yes a brain tumor generally presents with more sudden onset symptoms, not an indolent course like you describe.  still, you probably need another MRI.

I am not aware of any association with IIH and macrocephaly.  my family's heads are 25%ile.  if the IIH comes on in childhood one might expect it to produce a larger head, but once the sutures are fused the pressure will not affect head size.

I don't know of anyone in the LA area, I would probably go to UCLA if I were there.  

what happened in your appointment yesterday?

Deb
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Sat May 13, 2017 7:10 pm

Lyme also can cause IIH.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Tue May 16, 2017 3:43 am

Hello ladies, thanks so much for your replies.

Well, I came down with the flu AND a "real" garden variety migraine (with a lovely aura) on Thursday night, so have been laid up dealing with that. Husband is sick too and my youngest ended up with a double ear infection. Needless to say I had to push back my appointment! I'm going on Wednesday at 1pm and I'll definitely update afterwards. Knock on wood I think we are all on the mend. I can't believe how many germs my son brings home from preschool.

Deb, that is all very interesting about the Lyme, retinoids, autoimmune, and tonsillitis and sleep apnea stuff. I have wondered if I have sleep apnea since in the past I've gone through periods where I have these weird episodes of abrupt waking, lurching sensations while half asleep, and yes, feeling like I stop breathing while falling asleep. All of this has, of course, been chalked up to "hormones" over the years.

That said, almost all of my issues DO truly flare up when I'm ovulating and PMSing... to the point where I have wondered about a hysterectomy so I can get off the monthly cycle roller coaster.

Okay, back to work -- trying to catch up on so much housework. When we all get sick the house looks like a tornado hit it!
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Thu May 18, 2017 1:37 am

Hi! Well, the appointment was reassuring but not productive. Reassuring in the sense that my neuro exam was normal and he said he did not feel my symptoms are indicative of something dramatic/dire. But he wasn't really interested in the IIH idea. He did say that we'll wait and see what my visual field test shows on Monday. If visual field isn't normal, we'll do an MRI and go from there.

He seemed to think that my symptoms are all "migraines," "ocular migraines," and "hormones." So kind of the same (non)answers I've been getting for years. I may go back to my old Lyme doctor even though he's an hour away and pursue it with him. At least I know he's open minded and will probably indulge me if I demand certain tests.

Frustrating to keep finding myself in the same position, without answers.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Thu May 18, 2017 6:08 am

hi Lola;
well, that is not surprising.  he is not interested in ruling out IIHWOP.  the only way to detect it is to do the LP.  you may need to get a second opinion.  but after what you say about your sleep, I think that might be where the money is for you.  if you have OSA, any ICP issue will likely get better with treating the OSA.  unfortunately, getting a doc to order the right test and then take it seriously could be as difficult as getting your neuro to pay attention to your symptoms.  I would not have gotten my diagnoses or gotten better if I was not a doc myself and able to be persistent and get my docs to order what I wanted.  it's very difficult for a layperson to navigate this.  where do you live?  I had to go to Stanford to get diagnosed with OSA because the local sleep lab couldn't find it.  then I got better with jaw surgery for the OSA; it put my IIHWOP into remission.  to get a sleep study ordered, you may need to lie and tell them that your husband witnessed you having apnea.  they won't do it just for snoring, even though you don't even have to snore to have sleep disordered breathing.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Fri May 19, 2017 8:26 pm

It's definitely frustrating, but I would push for a LP to rule out IIH if your tests come back normal. If you can have evaluation for sleep apnea and/or see your Lyme Disease doctor in the meantime, it wouldn't hurt.

They blamed my endometriosis, obesity, and even suggested depression. They tested me for MS, sleep apnea, etc and treated me for all types of migraines/headaches, but my symptoms never improved until they removed CFS during LP. My opening pressure was only 18 or 20 during my 1st LP, which is low for IIH so they continued to test me for other things. My neuro-ophthalmologist was my champion and kept telling them it was IIH because my symptoms went away when CFS removed, but no one listened until he ordered another LP and the needle popped out because my pressure was so high. The radiologist said it was like striking oil and they still needed multiple tubes for draining once they got a needle in there. It was difficult for anyone to deny at that point.

I guess my point is that you really won't know until they do a LP and it will depend more on your reaction than the actual numbers. It doesn't hurt to rule things out, especially with your history. And, if you can find a cause, that's an added bonus.

Good luck with the visual fields, and please keep us posted!
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Sat May 20, 2017 7:07 pm

wow, I didn't know that story about your two very different pressures leading up to your diagnosis.  what an argument for how ICP can vary significantly and that one snapshot in time should not be the end of the story.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Mon May 22, 2017 5:34 pm

Definitely! They had difficulty with 1st LP even though it wasn't reported, so I've always questioned the accuracy of that opening pressure. I did still get relief once fluid was drained though. The 2nd LP was months later, so had plenty of time to build back up.

I still swing a little. I was at 200 with LP shunt, but comfortable at 150 with the VP shunt now. So many things affect ICP, I wish they would start just paying attention to our reactions instead of the numbers! The surgeon at Cleveland Clinic said they don't even use LP when suspect overdraining any more because pressure fluctuates so much just from laying down. They did ICP testing prior to changing shunts, but initially just did revision based on my symptoms and I did better for a couple years. LOVED HIM!!! Of course local surgeons were telling me it was all in my head because my opening pressures were normal at that time..ugh! One of them was supposed to be an IIH Specialist and sat on the panel at the IHRF Conference. So frustrating that even the experts disagree or don't get it!
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Thu May 25, 2017 5:57 pm

yes, I agree.  I am trying to figure out what to do for my son, and it's impossible because the child neurologists are even more clueless.  his current neuro didn't even know that sometimes people go into remission after one LP.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Thu May 25, 2017 7:02 pm

Ugh, sorry Deb. That has to be even more frustrating when dealing with your child!
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Fri May 26, 2017 3:53 am

well the one good thing is that because I'm a doc, he might give me what I want if I ask.  I just have to make sure it's the right question.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Fri May 26, 2017 11:51 pm

Hi ladies!

Sorry again for the delay in replying, it's always so hard to keep up with correspondence etc. while managing my kids and household. Please tell me it gets easier when they're in grade school! lol.

So I had my visual field test on Wednesday and it was normal. Doc said it was "very clean." So, that plus the normal neuro exam has been reassuring but, again, no answers.

My plan now is to go back to my old Lyme doc next month when I have time to make the drive and I'm going to ask him about IIH and maybe an MRI to solidify my peace of mind, though at this point I am feeling a lot less anxious than I was a few weeks ago.

I'll also definitely be asking about the sleep apnea stuff. Since my early 20's I have had these periods where my sleep feels really weird. The lurching/tumbling sensations I mentioned above (different from the typical jolting awake/startle), plus a lot of waking up with my heart pounding and what I call "sparkle vision." Also sometimes wake up with a subtle glowing grid or lattice pattern -- like perfectly geometrical -- covering my entire field of vision. It's always gone within a minute or less. Oh also, night sweats. Usually when PMSing but sometimes they happen at random or when I'm under stress. Also as I mentioned there are definitely times when I perceive myself to stop breathing while falling asleep or to be breathing extremely shallowly. But I never gasp or snore.

Anyway thanks again for all the feedback, this is such a confusing maze and frankly I'm just really tired of the weird symptoms!
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Fri May 26, 2017 11:53 pm

Oh also -- I am in the LA area. But I would travel to norcal or AZ, etc., to see a good doctor for any of these issues!
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Sat May 27, 2017 6:56 am

the only way to rule out IIH in your situation is an LP.

the best place to get your sleep evaluated is Stanford, if you are willing to travel.  if that's positive, I would go see Dr. William Hang, an orthodontist in Agoura Hills, near you.  His recommendations led to my remission from IIH.

the night sweats are a sleep apnea symptom.  OSA is worse around your period.  stress makes OSA worse.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Sat May 27, 2017 5:36 pm

Thank you so much for this info. I will call the Lyme doc on Monday and I'll ask him for an LP. Seems like it'll be easier to pursue that first since he's local. I think if I beg for it he will do it.

Dr. Hang's website looks great and I may just go ahead an book an appointment with him for my son, who is 3.5 and is a snorer/mouth breather in his sleep. I was already thinking we need to look into having him seen so this works out well.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Sat May 27, 2017 5:43 pm

Something else just occurred to me after looking at Dr. Hang's website. When I was five years old it was discovered I had an underbite. I had a TON of work done throughout childhood to correct my bite. Could this be the cause of my issues?! If my lower jaw was pulled back? I had many retainers, an expander, and two types of headgear. As a result I have a jaw and set of teeth worthy of a toothpaste commercial, but at what price?
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Sat May 27, 2017 6:12 pm

Sorry to bombard you, I am putting the pieces together here (I hope). I also have had, for MANY years, a "scalloped tongue." I'm now reading that this can be a marker for OSA? My tongue always has indentations along the sides from where it pushes against my molars.

....And now I also remember that I went to a holistic dentist for a cleaning (many years ago before any of this stuff was on my radar) who had me breathe through a straw device that tested something to do with your oxygen/breathing and they said I was high risk for sleep apnea and wanted to sell me some kind of device to wear at night? I dismissed it because the place was VERY salesy and it seemed like they just wanted to make as much money as possible off of their patients.

Also although I've never awakened gasping I have once or twice awakened gagging, I assumed from stress/a dream, very unpleasant.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Mon May 29, 2017 1:14 am

this is a good time to see Dr. Hang for your son.  mine started Biobloc at age 4 and it did wonders for him.  if you had orthodontia that pulled your lower jaw back, then I believe this sets you up for compression of your jugular veins and IIH.  I have been in communication with another woman in Italy who had this type of ortho done and she immediately crashed into IIH.  of course this has not been proven and you won't find any docs out there who would corroborate this, but it just makes sense anatomically.  I got better when my jaw was advanced by 1cm: my ICP dropped from 23 to 14 and I went into remission.  I think it would be worth your while to see Dr. Hang.  He is extremely knowledgeable and would tell you the truth as he sees it regarding your jaw and the ortho you had.  yes scalloped tongue means there is not enough room for your tongue, your jaws are too small.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Tue Jun 06, 2017 3:12 am

Hello ladies, just an update.

I am scheduled for an MRI tomorrow morning via the neurologist I saw a couple weeks ago. To be honest having the test scheduled has made me terribly anxious and I am worrying that they will find something horrible. I'm trying to keep it in perspective.

I am seeing my old Lyme doc on the 14th.

If the MRI shows empty sella as it did in 2010, I am just going to point blank ask him for the LP. I might print out some of the articles/studies I've read that talk about empty sella as a "classic" marker for chronic high ICP.

My flickers and flashes have continued, they abated somewhat for a week or two but as soon as I ovulated they started up again. I have also noticed that the old "splotches" in my peripheral vision, which are permanent but wax and wane in severity, are definitely looking more defined and a bit larger currently. Which leads me to think and hope that the flashes are connected to this since it's all flaring up simultaneously.

I read that coxsackie B can trigger IH. I think I mentioned above that we had Hand Foot and Mouth come through our house right before this all flared up for me. I was really fatigued and had a sore throat for almost a month, it was a nasty bug. I understand that HFM is coxsackie A6, not B.... but is it possible that it could have triggered this, since it is an enterovirus too?

I am really really hoping the neuro will cooperate and order the LP after the MRI. Despite being thin, I meet all the other demographic criteria for IIH as a woman in childbearing years, prediabetic (terrible family history of type 2), etc.

Anyway that's the news over here. I'll be on pins and needles until I hopefully DON'T hear back from the neuro by friday (no news is good news, they only call if the MRI shows something concerning). So hopefully with the imaging behind me I will be one step closer to some answers.

I see that Duke otolaryngology seems to have some docs who are experienced with IH? We are actually contemplating a move to Durham in a couple years to be closer to family. Would be nice to be near some doctors who actually understand this.

Thanks again for the ongoing support, hope you all had a nice weekend.
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Tue Jun 06, 2017 10:11 pm

Okay, MRI normal! I don't know the details yet -- have to wait for my appointment. But I know that nothing urgent/scary was found. So that's good... and makes me think even more that IH may be at the root of my symptoms. Will be interesting to find out if my empty sella has stayed the same.

Just thankful the scan was basically normal so I can go to AZ this weekend for my father-in-law's birthday and not be on pins and needles waiting for results!
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PostSubject: Re: Not diagnosed yet, anxious, seeking feedback.    Fri Jun 09, 2017 2:32 pm

There have been members that have had good experiences at Duke. They usually order MRI, CT, etc to rule out other conditions, then LP to confirm IIH. They may focus on the opening pressure, but the real test is whether your symptoms go away or not.

Keep us posted and enjoy your trip to AZ!
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