Hi everybody ! My name’s Julie and i’m 28 ; i live in France - so apologies for my english if it seems a little odd sometimes

Here’s my story with iih. It’s a difficult one, as if i’m certainly diagnosed with iih, i’ve got symptoms that doesn’t fit totally with iih, as well as a chronic inflammation syndrome in my blood.

As long as I remember, I always had headache. Since I am about 10 I experienced several treatment for migraine, but never really found one able to relieve my pain. I was used to it.

Three years ago, I started to have bad neck pain and odd feelings in the head, that were in a first time attributed to neuralgia. It felt like lava was burning my head, from the neck to the back of my eyes.

A few weeks later I started to suffer from pain all over my body, in the back, the legs, arms, everywhere in fact. I was directed to a pain clinic where doctors told me I had fibromyalgia. I was also directed to the internal medicine service of my hospital ; they found I had a chronic inflammation in my blood, but were not able to explain it  (C-reactive protein around 30 since 3 years at least).

For a year I tried different medications, tried hypnotherapy. Things weren’t really better but I learned to be used to it…

I must mention that I experienced transient visual obscurations, blurred vision that lead me to my ophthalmologist in october 2012. He found I had two papilledema so he directed me to the hospital. I went to the ophthalmologic service and then went back to the internists that followed me yet. I had a lumbar puncture (I was at 30) and a MRI that showed an empty sella syndrome. 

So, I was diagnosed with iih and put on Diamox. 

Six months later, my papidellema had decreased so we tried to stop Diamox.
But quickly my symptoms increased so I had a new lumbar puncture in July, that was at 33. They put me back on Diamox ; i tried different dosages, from 500 mg to 2g a day. 

The summer and autumn went well, I still had headache and body pain but it was manageable.

But during the autumn I had several otitis and severe ear pain and tinitus. 
I also have a chronic sinusitis since years that increased during the lasts months. 

Finally, I had since february several episode of really severe abdominal pain, that left me totally unable to do anything except crying desperately on my bed till it pass. Only ketoprofen relieves me. 

For those recent symptoms, I went to hospital for a week this month. I had a new lumbar puncture (2 in fact, but the first time they tried 3 times without perform it..) : I was at 52 (they measured it when I was sitting on the bed and not in decubitus, I know the pressure is always higher in this posture, but 52 still seems to be very high to me…).

I had a abdominal and thoracic CT angiography for my abdominal pain, but nothing was found. 

I still have the chronic inflammation syndrome, but internists still aren’t able to explain it (it doesn’t match with any auto immun disease).

I was put on Lasix (furosemide) 40mg this time, as the Diamox clearly didn’t do his job.

Now I must go back to hospital next monday in order to see ORL specialists for my otitis/sinusitis problems (this week I had an otitis AND a tonsillitis in the same time !). I will also have a new angio MRI to see if there is something that could explain why the iih is resistant to treatments. 

I don’t feel like Lasix is doing well, as I have really bad headaches and tinnitus.

I clearly forgot a whole bunch of symptoms and facts but it’s a beginning

I am truly desperate by now. I’m in pain, almost every day. I don’t know if i have just iih or iih and something else. 

I know we are all dealing with incertitude. But by this time i am truly lost and exhausted. 

Please, if you have some tips or just a kind word of support, I will be very glad. 

If you have experienced atypic symptoms such as myself, please tell me. Maybe someone here has a similar journey through iih, and can help me to cope with it, or tell me how it went for her/him ?

  

Thank you very much for reading me. I wish all the best for everyone.


 

Hello Julie, and welcome to the forums.
I'm not sure that there is anyone here with a classic case of IIH.  It seems we all have slight differences.  But, we do try to share what we have tried, what has worked and what hasn't.  That is how we learn from each other.  So much of treating IIH is trial and error.  We recommend keeping a symptom and/or medication log.  It makes it easier to remember what has been tried and how we react.  
I take both the Diamox and Lasix to help keep my pressures low, even though I have a lp shunt!  Keep trying different meds.  I highly recommend that once you find a medication (or combo of), keep taking it.  Don't let the docs talk you into stopping, like they did before.  You were feeling better because the level of meds were working!!

BTW, your English is excellent.

Hi Wylee, thank your for your answer !
I will try to begin a symptom and medication log, you’re right it’s a good idea, especially as my memory tend to be tricky… 
I for sure will not stop any medication if it works like I did the last time ! 
I hope I will find soon a better treatment, as I am really tired to be sick everyday… 
I would never have thought IIH would be so hard to manage. 

And that they know so little about it...

Have a nice day  :flower:

Hi Julie, welcome to the group!!! Linda is right, IIH is difficult to diagnose and treat partially because it affects everyone so differently. It's rare and not life threatening, so there's also very little research.

I know these medications can have negative side effects, but I wish they'd stop trying to take everyone off of them once they start feeling better..it never works out well! You can use Lasix in combination with Diamox and other medications, so track your symptoms and keep talking to your doctors about options. It does sound like you have some other things that could be affecting your pressure (sinus and allergy symptoms can increase pressure, for instance), so hopefully you'll get some relief once they resolve.

There are different things you can try to help relieve some symptoms. Some members seem to benefit from heating pads, while others like cold packs. It is trial and error, but over your eyes or at the base of your neck seem to be most preferred. I have a sweet spot when my pressure is up..I lay on my side between a 45-60 degree angle (using pillows and blankets to prop myself up) and it takes the edge off sometimes. Acupuncture, reiki, and massage also help my symptoms for brief periods, if you can afford the cost or know someone that practices. Also, try caffeine when headache starts.

Unfortunately, IIH can also make us susceptible to other headaches, so sound, light, sleep, food, and a myriad of other things can affect you. You'll eventually learn triggers and be able to manage your IIH to a point..keeping the symptom log will help.

Look through the site and let us know if you have any questions. We'll do our best to help you through this difficult time!

Take care,
Julie

Hi medmisfit ! 
I agree with you concerning to stop medications.. I told them the first time, « I’m feelling odd, I believe my pressure is high again » and they were « no no it’s ok your OP are right » but a few weeks later I was so bad they did a new LP and I was… under pressure
I guess it’s indeed trial and error and doctors try their best to help me, but I wisj they listen a bit more to the patients.
But I must learn to speak more firmly to them too !

Have you got more information about the way sinus and allergy can affect pressure ? It would be very useful to me as I’m currently preparing my appointment on monday with ORL specialists.

I hope they’ll find why I have so much trouble in this area ! 


Heating/cold packs are close friends to me
Here are the little BIG things that help me a lot :

• relaxation
  
• meditation
  
• yoga
  
• aromatherapy (I am very odor sensitive and I find a great relief in essential oils. I can give so advice is someone need it as I read a lot about aromatherapy. I think they could really help - not cure anything of course - but help and sooth with headache, stress, ORL problems, cramps, back/neck pain…)
  
• rest when needed : and a real rest (not watching TV or read or be on the internet in the same time :P). A real moment for myself to help me coping with pain.
  

I try to do things for myself : reading, drawing, cooking…
I think it’s very important to take care our ourselves with the biggest kindness. 

Caffeine is good ! But not to much for me. 2/3 cup a day, no more.

What you say about triggers is very true. I think the log will help me a lot to find them more specifically. 

Thank you very much for your support.
I’ll help as much as can either ! 

Have a nice day  :flower: 

Ps : you look so kind on your avatar ! It made me have a big smile !

Sorry Julie, my ENT mentioned that sinus and allergy issues affect intracranial pressure, but I don't have any other info. I've seen a mention here or there, but it never seems to be supported by anything. My guess is they don't know.

Good luck at your appointment today!

Julie

Julie, how did your appointment go?

Hi ! 

Sorry for the late replies, I was at the hospital for 3 days! 

I went on my appointment at the hospital on monday, and I explained the doctors I suffered with really bad headaches and two more otitis since I was put on furosemide.

They decided to make a new PL (I wasn’t very happy since I had one only three weeks before…).

But I was right with my feelings : my pressure was up to the same level !!

So, Furosemide was not working at all for me.

I saw ORL doctors for the otitis and they think that was the bad high pressure that gave them to me. Probably diamox was not working very well for 6 months… And as lasix didn’t work at all, it explained why I suffered so badly with my ears.

So, we’re trying topamax now ! And I will see doctors again in two months. 

I took my first pill yesterday too : for now I feel ok, I hope it’ll last ! 

I will search in the forum about topamax. Any advice is welcome ! 


Julie

I'm glad to hear they're doing something! There's information regarding Topamax/Topiramate in the IIH and Medications section. Look through it and let us know if you have any questions. Please keep us posted on your progress!!

 

Hi Julie and I must apologise for my late response to your post, it seems that no matter where we live in the world we all same to have the same problems when it comes to our care for IIH. You've been given some fantastic advice by Julie and Linda, and I'm pleased to see that you are being tried on another medication in the hopes it will be successful. I'll have my fingers crossed for you.

I am sorry for being away so long !

This year has been a very tough time 

I'm still on Topiramate and I am glad to say that my iih seems to be well-balanced at the time 
It's a very good news after all the past years..

I have to pass some others tests this year and i have been diagnosed with ADD too. I need to pass others neurocognitive tests again but in France it's a challenge to find good professionnals and therapists in this area :(

I still have though time with my ears :'( with an otitis by month...

Anyway, i hope everyone is fine ; i will take the time to take news

I used to be on topiramate for icepick headaches, and it worked wonders. I no longer take it since I got my 'riggers' for them under control.
I barely got side effects compared to diamox.
Hope you are well.

Julie, I'm so glad to hear that you're feeling better!!! We really do appreciate the updates.

I would suggest that you make sure the medication for ADD doesn't interfere with the Topiramate, and check to see if the problem you're having with your ears is also a side effect of the medication. Sometimes the medications cause similar symptoms. You may not want to make any adjustments since feeling better, but at least you'll know it may not be related to high pressure.

Wishing you continued progress and a good neurologist!!!

Take care,
Julie

hi Julie;
fibromyalgia, ADD, and elevated CRP are all associated with sleep disordered breathing/sleep apnea.
OSA can cause recurrent sinusitis, and inflamed tonsils, as can swollen tonsils worsen OSA.
OSA can also be a cause of IIH.
it might be worth checking out.