_{Does anyone else experience neck pain and stiffness with IIH?}

Does anyone else experience neck pain and stiffness with IIH? It has been bothering me a lot! Also ear pain/ pressure? I don't get the whooshing or ringing sound in my ears, they just hurt and feel like too much pressure. Of course I get the headaches really bad every day too, but if there's a rare occassion that I don't have one, then I'll have all these other symptoms. I would just like some relief from all of this, anything in addition to the Diamox that I'm currently on would help! Maybe I'll try Cranial Sacral Therapy?!

I definitle get the ear pain/ pressure. It feels like my ears are being turned inside out. Puttimg a finger tip gently in the entrance of the ear canal seems to help. But the cartilege is soooo sore. I also get neck stiffness at times.then again, i have constant ringing in my ears.

Yeah, that's what I have done too is just stick my pinky finger in there. It helps a little like you said. My neck has been so sore today! The insane headache has come and gone at times. It helps to know that I'm not the only one dealing with some of these symptoms! I'm sorry your suffering so much too!!!

But [You must be registered and logged in to see this image.]for sharing you similar symptoms and helping me know that I'm not alone when dealing with some of these crazy things!!!

You're definitely not alone! I get regular massages to deal with the neck pain and stiffness. I also have ear pain that drives me bonkers some days. I've found moist heat helps my neck, but haven't really found anything to help my ears. It all gets worse with my headaches, so varies depending on the day I'm having. They are typical symptoms, so hopefully you can at least find some comfort in that ;)

Take care,
Julie

Even I get neck pain.

I wonder if our head pressure is widely different than our spinal pressures? It's as if there is something that clogs up and allows the pressure to rise but then opens and allows the pressure to go down, and up and down we go.
I have had a lumbar drain test, but no one has ever said anything about checking my head pressure. Wonder if I should ask one of the docs???

I just emailed my Neurotologist earlier today. My untubed ear has been clogged up for a week. Loud tinnitus too. He has suggested I try using Afrin nasal spray, twice a day for the next three days. If my ear doesn't clear, I'll be seeing him next week. I may end up with matching ears, tubes in both. At least flying would be pain free!

Yes me too. I often have neck pain and ear pops with discomfort in my ears. They feel like they're full at times and seperate to my head, they also leak when they're like that, not with csf, thank goodness, but the pressure pushes out the wax which is very unpleasant.

Medmisfit - Yes...my neck and ear symptoms all get worse with my headaches too. Good to know that it's typical for most people! Wylee - you got me wondering the same thing about head and spinal pressure. I hope all goes well with your ears! I've never had tinnitus, but I know how bad the ear pain can be! Heidi - I'm sorry to hear about your neck and ears and how painful that can be for you! I hope it improves...even a little! Thanks everyone for letting me know this is all very common stuff with IIH! I'm going to continue to fight through this as best as I can along with all of you! Thanks for all the support!!!

yes, I get that ear pain, I was blaming it on allergies but I its all part of this. Neck pain too :( i woke up with it all just a few minutes ago... thank god its saturday.

I'll be seeing my Neuorotologist on Monday for my ear. I tried the Afrin nasal spray, twice daily since Monday. I can pop my ear now, but it still won't stay clear. I'll ask him about the possible IIH connection, but he isn't real knowledgeable in that area. These docs have specialized themselves so much it makes it so hard for us to get the help we need :roll:

Dmajorly: Sorry to hear you are having such a hard time with the neck pain! I know it can be really bad [You must be registered and logged in to see this image.] I haven't found much that helps with it, massage a little!

My Doc couldn't help. My ear is clogged up due to fluid behind the ear drum in the eustachian tube. He thought it's due to allergies or a head cold. I was hoping it was IIH related. It would be nice to get rid of the neck pain. My neck feels fine until I turn my head to look at something, then when I turn my head back, that's when it hurts the most. Kind of like it gets locked up.

I have been doing Cranial Sacral Therapy for just over a year now, I go once a week. It helps with my neck stiffness and tinitus. It has little effect on some of my other symptoms, but it has greatly improved my quality of life. I hope you find some relief.

Sounds like something worth looking into.
How did you find your therapist, Betsy?

She was one of my regular customers at work. When I see her Thursday I will ask her how you can find a local therapist.

I know I can look online, but would rather find one based on recommendations.
I am having an MRI done in a couple of weeks.  I think after I get the results, assuming they are all clear, I will be actively persuing other things to try, including the cranial sacral therapy.  That neck pain and stiffness has to be a symptom of something??

I was told they are symptoms of IIH, but massages, myofacial unwinding, and moist heat have helped me a lot. I think they would be categorized as "everybody responds differently" symptoms..like I don't have wooshing anymore, but my ears constantly hurt.

If you're trying an integrative therapy, you'll definitely want practitioners by recommendation. Luckily a lot of the search engines have their own review section, so you can at least get a little feedback. Sometimes you just have to take a leap..it's all trial and error. I have a '3 strikes and you're out' rule when trying new therapies..if I have a good feeling about the person I'll try them a couple times, but if not I'll venture out to someone new. If I haven't had a good experience after 3 tries, then I assume it's not for me. Sometimes the practitioner will tell you it may take a couple weeks or something, so I'll wait unless I have bad reactions. Acupunture and therapies listed above have given me the best results so far. I hope you guys find something that gives you some relief!

Take care,
Julie

I think what makes this whole thing so frustrating is that it seems no one knows which way to go, who to turn to.  It's like OK, so you say you have neck pain, that's nice.  Ask her, don't bother me kid.  I'm going to see what comes of the MRI (I wonder if they will bother to do with contrast :roll: , shoot, I wonder if they will check my neck or just my head!!).  Then I will probably start with that Neuro-Chiropractor and just let her turn my brain to mush for two weeks.  Either it will straighten it out or make it so I won't care!

Amelia, are you making any headway?

My Cranial Sacral therapist was trained through the Upledger Institute. You can go to their website to find a local therapist.

Read the thread  Cranial Sacral Therapy in Alternative Medicine

Yes, neck pain is worse than my headaches.  Before I wa diagnosed, I had injections in my neck, didn't help much.  I also have ear pain and tinnitutis, only in my right ear.  Also, pain and pressure gets much worse when I bend over.  I also have a drippy nose, which occured to me today, might be csf, it is periodic but uncontrollable.

Sherry, that drippy nose just might be, CSF.  You may want to ask your doc about getting it tested,
BTW, my sore neck is on the right side too!

Yes, it could be CSF, but very rare. My nose drips more with pain and we've had it tested. Definitely something to monitor, but my ENT said it's generally very rare and causes intense symptoms ..also different consistency than typical runny nose. Pain and pressure do tend to get worse when bending or straining, so just be careful and try not to worry!

Sherry you should get that checked to see if it is CSF the last thing you want is a low pressure headache or infection.