_{Can having shingles cause IIH?
Shingles and IIH}

Can having been diagnoised with shingles have anything to do with IIH or can having IIh have anything to do with activating the shingles virus? When I was a child I had the chicken pox virus like the rest of my siblings but mine went "inward" ( I guess that's the best description that I can give you based on what my parents told me). I had a higher than normal fever that did not respond to any medication. So I had to be taken to the emergency room when my parents could not give the fever down. I think I ended staying overnight in isolation; eventually being sent home once the fever abated.  When I was 21 or 22 I ended up contacting viral menigitis (initial diagnosis) and stayed in intensive care/isolation for three days. I was "downgraded" to viral syndrome when they could not find a source to my infection (keeping in mind I was the only person who was sick). Soon after that the headaches started along with seizures that I still take dilantin for now; can't seem to be weaned off it. Can any/all of this be related? Just wondering...... :?:

Hi Penny, sorry I missed your post when I checked in yesterday.
Interesting that you have brought up the idea of a connection between Shingles and IIH.  My docs would tell you they are certain that there can be, because they have a patient who proves that.  That's me.
I had Shingles of the ear (known as Ramsay Hunt Syndrome) in March 2008.  I have been dealing with the residuals ever since.  Fortunately, I have a team of docs here at Duke University Medical Center that are willing to think "outside of the box."  When my dizziness and disequilibrium didn't improve after many attempts using different strategies, my Neurotologist started thinking that my Shingles may have left me with a mild case of viral meningitis.  In discussing my case with our interventional radiologist, they thought that I should have a lp and check my spinal fluid.  No sign of the zoster virus in the fluid (but it had been 2 years post onset), but drawing off fluid made my symptoms significantly better.  I ended up going on Diamox, and in just 2 weeks post lp I was looking to get back to working.  Unfortunately, it didn't last and we have been trying to get back to that point ever since.  I even have a lp shunt, which has helped to keep the pressure down, which has helped a bunch.  My opening pressures have always been between 22 and 24, but my body seems to like it closer to 11.  That's HUGE!!

So yes, Shingles CAN cause issues with ICP.  If your docs want to talk to my docs, they would be happy to explain their findings.  BTW, I used to live in a small town in Tennessee, and one of the Neurologists there told me I was concentrating on the symptoms too much, it was all in my head, and if I stopped dwelling on it I would be fine.  So I understand your frustration completely.

Linda is the only person I know that's had experience with both. I know shingles can cause inflammation and affect immune system, so wouldn't be surprised if it at least affected your symptoms. I hope they're able to find some answers and much needed relief for you soon!

Take care,
Julie

Hi Penny there has been some evidence that shingles has been a trigger for IIH, as has the Herpes virus. Although my initial trigger was hormonal during pregnancy, within days of being admitted to hospital for diagnosis I also came out in chickenpox, which made it much worse. Linda has the most experience in this area though and I'm sure can shed a lot more light on it for you.

Thank you ladies for responding. So let me get this straight....an opening lp pressure of 24 can be considered high??? MY doctor(s) think that my initial opening pressure of 28 or 29 and my second opening pressure of 24 seem like it wasn't really that bad. I'm told that I am just a borderline IIH patient and that my pain/pressure isn't really that bad and most likely I am just having migraine headaches which I am not dealing with on a "reality" basis. The pain/pressure headaches, nausea, noise in my ear(s), drifting/listing to the left, feeling either me or the world is constantly shifting (even when that isn't the case) is just my over indulgence for attention. Just lose the weight and get a man/significant other to concentrate on and I would probably feel better. Imagine that!

Penny, are you seeing doctors in east Tennessee and just don't want to admit it??  

Wylee:

Just looked at your post, you made me laugh! (I needed that!) Unfortunately I see my HMO doctor(s) in Chicago, Il. at a university hospital. In fact I have an appointment with my pcp later today.  It's gotten to the point of why bother; I tell him the same thing everytime I see him and he'll suggest that I see the other specialitst that aren't listening to me anyway. I feel like a fat hamster on a wheel; it's just a vicious circle. :frustrated

Penny;
I too have seen the case reports in the literature linking varicella/shingles with IIH.  the viral meningitis certainly could have done something to the arachnoid granulations where CSF is absorbed.

yes, 24 is in the borderline range and if your symptoms improved after lowering your ICP then that makes the diagnosis.  mine was 23, so is my son's.  we also worsen with exposure to chemicals, with sleep apnea, and valsalva maneuver.  although, strangely, my valsalva trigger is gone after jaw surgery for my sleep apnea.  we do not have papilledema, but there are plenty of cases of people who lost vision at opening pressures LOWER than ours.  so do not let your doctors trivialize your ICP.  if it is causing you symptoms, it should be taken as seriously as if it were 26 or 36.  they don't know you aren't the one to lose vision at 24.  and this can happen in the absence of papilledema.

Hi I'm Linda, not sure if I'm the Linda you are talking about. I found your post very interesting.  I was diagnosed with shingles in 2007 after catching chicken pox from my eldest son in September 2006, I also had it as a child. I had shingles with out the typical spots, however the doctor felt because of the type of pain I was suffering she felt it was definitely shingles.  I spent the next ten months on Amitriptyline because of the pain. I had problems on and off with pain especially when I was ill with colds etc or was coming down with something.  In 2010 I was put on Isotretinoin, for acne and was on that until August 2011.  I started with symptoms of IIH in November 2011 and was eventually diagnosed in May 2012. I have often had very similar conversations with my husband as my right eye is the swollen the worse.  It makes sense that something like shingles could cause problems like this. I did post something on here a bit ago after seeing what Wylee had posted about what caused her illness, can't remember when that was though.

Just realised I am not the right Linda but it is quite a coincidence that I am called  Linda too.

Penny, my surgical team at the Cleveland Clinic said they've found that everyone's "normal" pressure varies and it fluctuates throughout life. I was diagnosed with IIH when my pressure was only 20, but my symptoms completely resolved after CSF was drained. They argued about it and ran tests for months before agreeing to treat me. Now if my pressure goes below 20 I get low pressure symptoms. It really depends more on your symptoms than actual numbers, which is one reason we recommend the symptom log.

BTW, I gained 100lbs AFTER diagnosis. Weight loss can help with symptoms for some people, but it doesn't affect others. Unfortunately, they're always looking for the easy fix..if you're overweight or have a history of depression, that's where they tend to focus. Even though both of those things are listed as symptoms of IIH and side effects of meds used to treat it. Ugh, don't get me started! LOL

And sorry for the Linda confusion, I was referring to Wylee ; )

I hope they're able to figure it out and get you some relief soon!!!

Take care,
Julie

Hi to everyone:

Question: directed to Medmisfit or anyone/everyone else: this may seem like a dumb question but I need to ask: how and why should I keep a symptom log? IIH isn't the only problem that I have. A lot of my symptoms overlapp due to my other aliments. (Trust me I got a more than just one or two medical issues  :oops: .  As fat as I am (as of yesterday over 300lbs.) I may eat one to two meals a day (which is a real good day for me); I just don't have an appetite or the nausea/pain/pressure kills most attempts at wanting/eating food. Just trying to understand this beast to the best of my ability.

Penny, by keeping a symptom log, your doctors may be able to see patterns emerge that may clue them in to what is going.  Sometimes a reaction or response can be very subtle, so subtle that only a trained doctor would be able to make the association between a response and a clue.

The symptom log that I like is this one:  [You must be registered and logged in to see this image.]Symptom Log.docx 


Especially because you have more than one medical issue, it would take a trained eye to decipher which symptom goes with which disease, and what might be medication related or something else.


I like to combine my symptom log with my medicine log, so any change in meds is included in the mix.

Yeah, the symptom log gives doctors more information and helps you to identify triggers/changes. If you're keeping a food log for weight loss, you can just make a note of your symptoms that day. I also know members that have used a checklist and/or number system to guage severity of symptoms. You can included symptoms, medications, treatments (massage, acupuncture, therapy, etc), activities (shopping, dinner with friends, etc), and whatever else you think may affect you. At one point I also included sleep, weather and a food log. I found that I was sensitive to processed foods and animal products, changes in weather, and need at least one day of rest to recuperate each week. You really can cater it to your needs. I just tend to use it to look for any patterns or triggers when I'm struggling now. Honestly, I have one doctor that loves it and another that barely gives it a glance. I use it for my reference because my memory is bad and I can't remember if I'm feeling better or worse..lol.

Also, be careful about limiting your food intake. I found that I wasn't eating enough calories, so my body was holding onto everything I put in it. I would recommend requesting a referral to a nutritionist/dietician. They'll help you figure out how many calories your body needs to maintain proper function and help with a diet plan. They should also take all your medical conditions into consideration. I went to a heart health center where they were able to measure hard (muscle, bone) versus soft (fat) mass and found my skeletal structure is heavier than BMI's suggested weight, so I'll never be healthy by their standards. You honestly have to let go of all the preconceptions and do what's best for your health. Feel free to send me a private message if you'd like to discuss things further.

I hope you're feeling better soon!
Take care,
Julie