Hi my name is Megan. I am 35 years old and have been suffering from headaches for 16 years. My headaches started after a car accident. It wasn't until this past Octobr that I was diagnosed with IIH. I was so grateful for the diagnosis as I thought with the correct diagnosis, perhaps there would be a cure. I have been enduring daily headaches now for nearly ten of the past 16 years and we have been incorrectly treating them (unsuccessfully) as migraines. My neuro put me on Diamox and quickly escalated the dose to 1500 mg daily with lasix 10mg as well as it didn't seem to be helping much. I also ended up taking 40mEq of potassium. I didn't like the side effects but endured them hoping for relief and preservation of my eyes. Unfortunately the diuretics accompanied by the diarrhea they gave me dehydrated me so badly I needed iv fluid replacement and my potassium was dangerously low so that I was having chest pains. I have now been taken off my meds and we are discussing a shunt. I am terridied. I have read other postings that say IIH is temporary and am confused. I also didn't expect to get these tremors or be falling down. I have little children and aside from the pain I am constantly exhausted and often confused. Is this normal? Will it get better if I get a shunt? All the postings regarding shunts seem so scary. It would be amazing to hear some success stories. I need my life back. I feel like I am watching my life go by from my bed. I am appreciative to have this site to read I m not alone and gather more information because as everyone knows, even our doctors seem uninformed. Thanks for the support and a place to feel safe and normal.
Megan

Hello Megan, and

I'm so sorry that you have had to deal with your symptoms for so many years. That's just plain unfair!

IIH is not in itself a temporary disease. It can, however, go into remission. That's what we all are shooting for. The usual course of action is to try the meds first, which usually starts with the Diamox. There are other meds that can be tried, and different combinations are sometimes tried too. Others doctors feel that once Diamox fails to maintain a lower pressure that surgical intervention is considered. Because you have headaches in addition to vision issues, optic nerve fenestration is probably not a consideration. As far as shunting goes, there are many possibilities. The shunt can originate in the spine (like a lp shunt) or within the brain (like a vp shunt), but can terminate in many places. That's up to the neurosurgeon, and you. Getting a shunt is not a cure. But it can be extremely helpful in greatly reducing the symptoms so that a normal life can be resumed. I have a lp shunt. It has a programmable valve, which has been wonderful.. They are able to adjust the setting externally.Getting a shunt is not always a done deal. Yes, revisions are highly possible, but that doesn't mean it would happen to you. The only revisions I have had are the adjustments, and I've had my shunt since November of 2011.

I suggest that you have a good read around the site. There are success stories here. There's also many, like me, who are better, just not quite where we want to be, yet. There are many supportive, caring people here, and because we are worldwide, there's a good chance someone will be around to help answer a question, or reply to a rant and rave, or be available just for a chat.

Hi Megan and welcome to the group. The symptoms you're having are common with raised pressure, and they can be scary. Having a shunt means that your pressure is controlled so you don't experience any of the symptoms, and can have a more productive life.

I totally understand your being terrified, I was too when they first mentioned a shunt, because it was such a shock and meant that my IIH was out of control. However, the difference having a shunt has made is incredible. It has allowed me to be functional and I went back to work full time after having my first one, and carried on working for another 6 years. There are members who are working and have shunts too.
When the shunt works it really works and leaves you free of the headaches and LP's.

Have you noticed if your headaches worsen at the time of the month and when the weather is awful? We seem to be more sensitive to Barometric headaches caused by the barometric pressure, and also to Menstrual migraine.

Any questions you have please ask away, we are all only too happy to answer them. I know there are alot of stories about problems with shunts, and I wont lie to you, they can be problematic, but not always for everyone, so stay open minded. Unfortunately the successful shunt stories don't always make it into our success forum, because members don't feel the need to return and update us on how well they are doing, because they are just getting on with life, but some do update us.

I myself have been shunted since 2001, I am now stable and so is my vision, and my optic nerves are now pink and healthy. Without the shunt I would have been blind, so even though I was like you at the start, I realise it was the best thing for me. I'm sure others will tell you the same.

Yes Heidi I am definitely worse with my headaches around my cycle and weather makes them worse. At times it feels like everything makes them worse. I am actually considering s hysterectomy but am also scared because hormones definitely make my IIH worse so I fear for life post radical hysterectomy with no hormone replacEment. I also have endometriosis and cysts so this is why consideration for the radical hysterectomy.
I have read some things about decompression. By read, I simply mean I have seen others post referring to this. Can you shed some light? Also can you better inform me what recovery from a shunt is like? I currently still work. I manage about 25-30 hours a week as I must to maintain insurance. It's sad because working takes all my energy and then I am in bed for the rest of my time. Wondering how much time off work is generally required and have also seen some people say that you are unable to drive for 6 months. Finally, perhaps unimportant but I am curious how much hair they shave and how people deal with that. Do you just not cover the bald spot? Wear a wig or a scarf?

Hi Megan, sorry my reply is late..the sentiment is the same, welcome to the group!

Let me start by reiterating.. most of the people that look for these support networks are still having issues, so they're posts tend to be full of problems. If you search the Internet, you'll also find the most horrifying posts. Everyone responds differently to the treatments, so you have to take the information in context. It is definitely scary and overwhelming, but you can be successful. There is a section of success stories on this site in IIH Success section. I would encourage you to start there. You can also get information regarding the different types of surgeries, how to talk to your surgeon, etc in Useful Guides and Print Outs section.

Personally, I have had a lumbar shunt since 2002. I have had to have a few revisions, but have been able to maintain fulltime employment since 2005. The initial surgery is scary and overwhelming, but I felt improvement instantly and I do with every one of my revisions. The usual recovery period is 4-6 weeks and depends on the type of shunt. That's the only amount of time I've ever been limited w/ driving. I think most members are pleasantly surprised w/ recovery process because they've also read all the horror stories. It's uncomfortable just like any other surgery, but they'll have you up and walking as soon as they can. Some people have only had to stay overnight, but that also varies. If you have the VP shunt, they usually just shave a small area and will try to place it where other hair can cover it, so it's not as noticeable. I also had endometriosis and ended up w/ a full hysterectomy the year before I got the shunt. For me, it was the best thing I ever did. I couldn't believe how debilitating it had been until I started to recover..even with the IIH, it was a whole new world! If you're living in the states, I would suggest looking into FMLA. Your GP can complete one for ongoing issues and surgeon should be able to complete the paperwork for the shunt placement, but you'll have to get the forms from HR.

Decompression surgery doesn't have anything to do w/ IIH, but a lot of members w/ IIH have other disorders. This surgery is used to address Chiari Malformation, which is basically a condition where the base of your brain is below your skull line. They do decompression to give your brain more room to function normally.

I hope that answered some of your questions and put your mind at ease. If not, feel free to contact us..we'll do our best to answer your questions and help you through it!!!

Take care,

Julie

Hello Megan

I know very little about all of this, so I hope you have found useful information and are somewhat reassured by others upthread.

I just wanted to say hello and welcome and I'm sorry you're going through such a tough time.

Does anyone else have tremors? Was recently stopped of my diamox and lasix and am now having tremors. Unfortunately my neuro called today and said its probably anxiety. I wanted to reach through the phone and strangle someone. I don't have anxiety but I am not shaking all the time and since we stopped the meds my headaches are out of control. I assumed my pressure was up. He told me to see my GP. I feel lost and like I am now on my own again. Thought my neuro understood but apparently if the diamox didn't work he's out of ideas altogether.

There are several medications available, if Diamox wasn't working. Did he at least step you down off the Diamox? If he didn't, that's probably causing the tremors. They're also side effects of the meds. I had them before they started Potassium supplements, so I wonder if they need to check your levels again. I would follow up w/ GP and ask for referral to another neurologist, unless they've already referred you to a surgeon..basically, you just need someone else to look at your history and give you an opinion.

Heeey So sorry for the late reply!!! I Have just recieed my VP shunt a month ago Monday it was only a one night stay and they really didnt sahve to much off I am able to cover it with a cute fabric head band its like a circle on the top of my head and a bit behind my left ear. I hear all docs have different views on the shaving but for me i was pleased!! these headbands are super cute i am kinds liking them
16 years my goodness I am so glad they know what your dealing with now!I was so nervous about my shunt and I would do it again if need be it was so easy going for me. I hope I can make you less nervous by telling you Iknow others have had a worse time though.. but good to hear both. I had no sign of infection and was released the next day!