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 Linda - Different kind of IIH - SIH

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Wylee
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PostSubject: Linda - Different kind of IIH - SIH   Tue May 24, 2011 11:03 pm

Hi. My name is Linda. My story seems to be completely different from any of the other cases I have read about on any of the web sites.
I first got sick 3 years ago in March of 2008 when I came down with Ramsay Hunt Syndrome. That is a fancy name for shingles of the ear.
I was 55 years old at the time, driving tractor trailer, by myself, on long haul runs, driving far too many hours and not getting enough rest. My immune system became weaken, and out popped the zoster virus (shingles) and the dermatome it decided to follow was through my left ear. It destroyed my vestibular system and caused severe facial paralysis. A frozen face I could live with if I had to, but to constantly feel like I had a bad "buzz" was not going to work if I was going to keep driving. After being misdiagnosed, getting the wrong meds, too low a dose of the right meds, I finally found Doctors that knew what I had and what needed to be tried to get me well. That was in 2009. They took me off the road (I became "disabled" and haven't worked since) and tried vestibular therapy, gentamicin injections, more physical therapy, ENG/VNG tests, MRI's, you name it, we tried it. My Doctor, one of the best in the country for treating patients with "disequilibrium and balance" issues was at a loss as to what to try next, but was NOT going to give up. He thought I might have viral encephalitis, that would explain why my brain wasn't compensating for the loss of input from my RHS ear. He and my Neuro-radiologist wanted to test my CSF to see if there was sign of the zoster virus in the spinal fluid, but also, the radiologist had some luck with some patients in improving their hearing and/or ther eyesight by manipulating their CSF pressure. She had found that there really isn't a "normal" when it comes to the pressure, that each person's body responds differently. She thought many of my symptoms sounded like IIH. I had my first l.p. in August of 2010, opening pressure was 22 cm, closing was 18.
I was put on Diamox tablets and Lasix and was symptoms free for 2 and one half months when the Diamox quit working. Since then I have had two more l.p.'s: 21.75 and 23.25 cm. I have tried Diamox extended release caps, Edecrin and now I'm on Zonisamide and Diamox. I am scheduled for a lumbar drain test next month to see if I would qualify for a VP Shunt.
I do not have pap. and my headaches are not daily, most times just last a few seconds (they do get my attention though). My biggest problem is the dizziness. Whenever I move my head, I get dizzy. I have nasty brain fog. Driving, even my own car is very difficult for me, but since I live alone and have no one to help me I have no choice but to continue to drive. Fortunately I can draw upon my many years of driving professionally to help me now. I have difficulty multitasking, memory both short and long term is shot, complex tasks I cannot do. I have to write down everything and then I forget where I wrote it down. I can't find the notebooks I set up for different subjects when I need them and when I do find them I can't figure out why I would have put them where I found them. I am trying to make repairs to my hail damaged home, boy is that a challenge. These are all things that I could do easily before I got sick, but not any more. And spelling, forget it. Hey, where's the spell check!! I am at a loss for words, I often have to substitute easier words because I can't remember the bigger words or if I'm using them correctly. My family lives over 500 miles away, my sister drives or fly's down to get me to drive me to my doctor appointments because I go to Duke, which is 275 miles away from my house. Considering I used to be able to drive 600-750 miles a day, easily, and now I can't do 275 says a lot about this mess I am going through. I have double vision, but mine is vertical. When I walk everything in my field of vision "jumps." I am overweight, but have lost 35 pounds already (no improvements) but have 75 to go.
So, technically, my CSF pressure is greater than 20 cm and my symptoms are relieved when the pressure is reduced, so I do have IIH, but what I have sure doesn't sound like anything anybody else has, except the others in the Ramsay Hunt research group that our Docs at Duke are studyng. So far, from what I have heard, we all have abnormal pressure, most are high, but some have low pressure. It seems to be holding true for the Menieres patients in the trials too. I guess I have IIH. The Docs really haven't said much about it.
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PostSubject: Re: Linda - Different kind of IIH - SIH   Wed May 25, 2011 12:23 am

Hi Linda and a warm to the group. You have certainly been through it, and you seem to be experiencing all the common symptoms related to IIH. I wonder if your having shingles has caused Secondary Intracranial Hypertension (SIH), because that can start with infectious diseases. Although the IH Research Foundation don't have it listed amongst the ones on their site, they do say that more research is needed to identify if other infectious diseases cause it. You can find out more by clicking on this link Causes of Secondary IH

A shunt would keep your CSF reduced and set to the correct pressure for you, and it would allow you to get some of your independence back, especially the driving. Your symptoms would be kept under control, although you may notice that you will have Barometric Headaches with the weather, and some headache around your menstruation, but they won't be as intense.

I know this must be a very frustrating and worrisome time for you, and I sympathise with the memory problem, as I'm sure will the other members. It's one of the typical and common symptoms as well as mixing up words too. We have some guidesheet and Logs that I hope will help you understand IIH a bit better, and there are also guidesheets on talking to your Doctor and Neurosurgeon with samples of questions you could ask them.

I am so sorry about your house , it must be so awful having to deal with that on top of this too, and it's a big load to carry on your shoulders . I hope that you will receive help from family and friends so that you don't have to fix your house alone.


Last edited by Heidi on Wed May 25, 2011 5:48 pm; edited 1 time in total
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Wylee
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PostSubject: Re: Linda - Different kind of IIH - SIH   Wed May 25, 2011 5:43 pm

Thank you for the warm welcome, Heidi. I guess I must have misunderstood what I was reading in the intros of the others and in the other websites. It seems everone talks of their terrible headaches, I am so grateful I don't get those, the pain behind their eyes and the high eye pressure papilledema (I don't have either of those). Their double vision is horizontal, mine is vertical. I thought those were the main symptoms of IIH.
That leaves me out. Occassionally I read about someone who has short term memory loss, rarely about being dizzy...........
i don't know. Was beginning to think that like with everything with this mess, these symptoms and this form of the illness is rare, Then again, can't find much written up about secondary intracranial hypertension, but the title does sound appropriate. I'll start looking in the medical journals and see what I can find. Thank you.
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PostSubject: Re: Linda - Different kind of IIH - SIH   Wed May 25, 2011 5:59 pm

There are many IIH sufferers who experience the symptoms differently to another sufferer, I think because of individuality, some have IIH with no papilloedema. I have to admit that there were many times before my shunt that I would suffer dizziness and faint quite often. I was told this was because of the build up of pressure. IT might be worth asking your Doctor if feeling dizzy is linked to raised CSF.Here is the link to the IH Research Foundation that lists the other symptoms common with IIH Other IIH Symptoms
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Wylee
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PostSubject: Re: Linda - Different kind of IIH - SIH   Wed May 25, 2011 7:29 pm

Oops, wrong terminology. I guess I should have said disequilibrium. I never feel lightheaded or fear of fainting. I feel like I am drunk. Swaying when I walk, unable to walk heal to toe - no FST's for this gal! My balance is off. It is not vertigo, although if I am real tired I feel the spinning when I close my eyes to go to sleep at night. This is more like the sensation you get when you walk 'roundy 'roundy in a tight circle real fast and then stop. It is like being on a bad amusmement park ride 24/7!! That is my kind of "dizziness".
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PostSubject: Re: Linda - Different kind of IIH - SIH   Wed May 25, 2011 8:23 pm

It could be Ataxia which is also experienced by some sufferers, Ataxia affects balance co-ordination and also speech. Have a look at this link and see if this matches the feelings that you get. Ataxia
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Wylee
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PostSubject: Re: Linda - Different kind of IIH - SIH   Thu May 26, 2011 7:52 pm

No, ataxia isn't it. You know, it's really kind of funny, our Doctors aren't telling us anything about this aspect of our illness. They are just trying to get us well. It's almost like they figure we aren't going to have to deal with it for a lifetime, so no need to give us instructions. Just concentrate on getting well. Again, we have been treated kind of differently than most IIH patients.
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PostSubject: Re: Linda - Different kind of IIH - SIH   Thu May 26, 2011 8:44 pm

I think in a lot of cases there are Doctors who have limited knowledge of IIH especially regular Doctors who don't specialise. It could be because they come across someone with IIH rarely, and when they do,then refer you to a Neurologist, who may or may not have specific knowledge of IIH. Unfortunately this is a recurring problem that an IIH sufferer faces, which is why we try to provide as much awareness and information as we can, and it is why we are part of the IH Brain Pain Team.

The IH Brain Pain Team are currently working on providing information documents that will be available to everyone needing information about IIH. The IH Research Foundation also have a registry, and through that, they can also collate all the information from sufferers who join it, and show all the common symptoms, causes and progressive information needed to keep doctors and medical professionals informed. Hopefully, this information will filter through to all doctors etc so they have a better understanding of what we go through.
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PostSubject: Re: Linda - Different kind of IIH - SIH   Fri May 27, 2011 6:18 pm

I have to admit I've had to educate my share of physicians. Most of them have an idea of what IIH symptoms are like (even the "experts"), but Heidi's right..they're different for everyone! I do have periods of dizziness and that "drunk" feeling..it gets worse w/ my headache pain now. For me the drunkeness includes slurring my words and falling over. The dizziness is usually short spurts of the 'spinning in circles' feeling, where the room completely flies by me..it can be difficult to manage some days. My coordination is a mess and I'm always dropping things or running into something!

I know didn't have headaches w/ my first bout of IIH..I just woke up one day w/ huge holes in my vision. I had some tingling and was really tired, but that's all I remember. My optic nerves were swollen, but I don't remember any pain. I think we see a lot about the headaches because they're so debilitating and people are looking for relief.

I'd also like to mention that Diamox was a nasty little drug for me. I know it's worked for a lot of people, but I was in a constant fog. I couldn't think, couldn't recall words, would get "stuck" and couldn't say anything. I had muscle weakness and a slew of other symptoms that started AFTER the medication. I've found that I have to journal my symptoms and any med changes. Meds can be helpful, but they can also agitate or change your symptomology. People w/ IIH seem to have multiple afflictions and related diseases, so just make sure you're getting everything down.

I hope you're finding some useful information. There's nothing worse than feeling alone..this disease can definitely be isolating and make even the sanest of us feel like we're losing our minds! Hang in there and keep us posted.
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PostSubject: Re: Linda - Different kind of IIH - SIH   Sat May 28, 2011 11:37 pm

I think what bothers me the most is that no onw has given me any direction on this. The Doctor who said I have PTC is a radiologist. The Neurologist hasn't seen me in 2 years, and hasn't said a word during this whole thing. She was supposed to be the person I was to go to fo my post herpectic neuralgia and depression. Never mentioned the IIH. When I sent her an email asking if I should limit my vitamin A intake as I have read as well as other diet changes, she merely refered to the studies showing that super levels are not good. But what about the reducimg sodium, increasing fluids with the diuretics? Never received any instructions on that score either. My brain is in such bad shape, everything has to be explained in the simplest of terms, but they haven't said ANYTHING at all! It's like, do I have IIH? I think you are right Heidi. In my case there is a reason for my elevated pressure, if the suspition of my Docs are correct, it's the zoster virus, so I have SIH. Maybe that is why my symptoms are different than most people with IIH but very much alike the others who also had Ramsay Hunt. So, maybe we are finding a cause and effect here, by accident. That may be helpful to someone. I am signed up with the IHRF in Oregon as a donor. My radiologist should have received something from them by now. I'll have to find out if she has. I don't mean to sound like I am complaining, but I feel like my Docs are only treating us to a very limited extent. I don't know who to even ask about getting more treatment. The Neurologist has showed her limited knowledge. I suppose I could try to find someone locally, but no-one here had ANY knowledge of RHS (which is why I had to go 275 miles away to Duke). Ugh. Brain mush!
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PostSubject: Re: Linda - Different kind of IIH - SIH   Sun May 29, 2011 12:43 am

You should say how you feel, especiallyt when you feel strongly that you have been let down by your Doctors hug. You are also within your rights to expect to be treated accordingly, and for you Doctor to have some knowledge of IIH/SIH, and if he doesn't to make sure he finds someone for you who does. It isn't enough to be given a diagnosis or even a tentative diagnosis of a condition such as this, and I would be angry and very frustrated too.

The IHRF has a list of resources to help you find a Doctor and here's the link Find a Doctor. I hope it will be of some help to you, and we also have a guidesheet with the kind of questions you can ask your Doctor to find out how much they know about IIH. The same questions apply to SIH. Talking To Your Doctor About IIH

Hopefully you will have a Doctor who has the right amount of expertise and knowledge of IIH/SIH and will be able to give you the right treatment plan and help,
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PostSubject: Re: Linda - Different kind of IIH - SIH   Sun May 29, 2011 5:56 pm

Yeah, I would definitely recommend reaching out to another doctor..a second opinion never hurts! Even if it's the RHS someone somewhere should be actively treating you. In the slew of specialists I see, I only have one IIH advocate, and that's my neuro-ophthalmologist. If you can just find one doctor that will listen to you, they can become a great ally and advocate for your needs. I've found a lot of times it takes another professional to make things happen. You just have to be the squeaky wheel and keep talking until someone hears you. It is a VERY frustrating process, especially when you're not feeling well. We'll support you as best we can!

Julie
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PostSubject: Re: Linda - Different kind of IIH - SIH   Fri Mar 23, 2012 6:44 pm

Today is my anniversary. Four years ago today my intense earache was joined by the left side of my face drooping and thus started my journey with Ramsay Hunt Syndrome. I still am dealing with residual issues, but the symptoms associated with the IIH are resolving now that my shunt's valve is set better. It has been a very long four years. A lot of pain, despair and changes. But, that is in the past. I am thinking of this as being the start of Chapter 5. It's gonna be a real page turner! On to bigger and better times!
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PostSubject: Re: Linda - Different kind of IIH - SIH   Fri Mar 23, 2012 9:13 pm

my fingers are cross Cheers to new chapters!!!
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PostSubject: Re: Linda - Different kind of IIH - SIH   Sat Mar 24, 2012 12:07 pm

It seems like you have come such a long way in your recovery over the past 4 years, Linda! Thank you for continuing to share your experiences here to help others. Here's to a great year ahead for you!! Very Happy
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PostSubject: Re: Linda - Different kind of IIH - SIH   Mon Sep 16, 2013 8:10 pm

Wanted to bump this back up because I think the idea of having IIH due to something different is a topic that needs to be addressed periodically.  

I had a very interesting discussion with my Neurotologist, the Doc who first came up with the idea of my dizziness being due to IH.  Seems he no longer has any Neurosurgeons willing to install a shunt under these circumstances anymore.  He didn't go into specifics other than that two of the three left the Duke system.  The third told him he won't be doing that surgery anymore.  As I told my doc, I am better than I was before I had my shunt installed, but not as good as I was the first time I had a lp done and CSF withdrawn.  Still chasing that feeling. Just sad that others coming to him now won't have the same chance that I got.

Fortunately, I was able to switch Neurologists, even though my other one was great in helping me deal with the post herpetic neuralgia (PHN), this one is looking at possible solutions to helping me feel better (through meds??) especially with the dizziness.  I have not had a Migraine Aura since June 9th (that's a major victory) due to adding Verapamil to my medicine inventory.  It has not changed my level of dizziness.  I caught myself before I fell yesterday.  That scares me more than anything.  I was at the top of the stairs when it happened.  I HAVE to move to a single level home.

I do not have paps, headaches are rare and very brief when then do occur, nausea has not been an issue.  Constantly feeling buzzed, mental/cognition issues, occasional neck pain are my problems these days.  Haven't had a lp in a while.  Thinking of maybe trying to draw off even more fluid to see if dropping the pressure even lower may help.

For those who aren't sure if they have IIH or not, we found that the best defining criteria is if your symptoms improve after having fluid drawn off by lp, you have IH (if the cause is unknown, it's idiopathic [IIH], if the cause is known it's secondary [SIH]).
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