Hello,
My name is Danette and I am 44 yrs old, married with three children (24, 21, and 16).
I have only recently been diagnosed with IIH or PTC or whatever you want to call it. I just met with my neurologist today after trying Diamox and hydrochlorothiazide with unfavorable results. The Diamox helped me go longer between headaches but the side effects were difficult to deal with. The hydrochlorothiazide did absolutely nothing and I had headaches every day. Today we discussed working up to the full dose of Diamox one pill a day for several weeks until my body adjusts and then two a day for several weeks, gradually working up to three a day. He is also referring me to a neurosurgeon for consultation for a shunt and also for the fibrous dysplasia I have at my skull base. Not sure if there is a relationship between the two which is the reason for the referral.
My husband came with me today to see my doctor because I felt he needed to hear from him what is really going on. I don't think my husband truly understood what I have been dealing with for the past 2 years. Like everyone else, he thought every day was just "another headache." Now I hope that he understands better.
I am hoping to hear from others for advice and support as I come to terms with this condition.

Hello Danette, and

I am so sorry your post seems to have gotten lost somehow. I do apologize for the delay in response.

Your story sounds all too familiar. Especially the need for having your hubby come with to the doctor's office. I too hope now that he gets it! What the vast majority of us have to deal with is much more than just a headache!! More like a melon in a vise.

I think most all of us have had issues with the Diamox side effects. As long as what you are dealing with is not an allergic reaction, do try to hang with it. It appears to be our first line of defense, and can really help. Having to slowly increase your dose is not such a bad idea. I have often had to do that myself. Give your body a chance to get used to the side effects (the tingling and exhaution I found the most annoying but did go away, eventually).

Let us know how your appointment with the ns goes. There are great handouts to take with you on this site for preparing for your appointment. Have a look.

Again, so sorry for the oversight, but know that you are so welcome here!!

Hi Danette! I also have to apologize..I could have sworn I read & responded to your post, but I don't see it anywhere. That's not typical for this site, so I'm not sure what happened.

Linda is right, a lot of people have found more benefit from Diamox & other meds once their bodies adjust. Unfortunately, sometimes the side effects are unbearable & you have to try other med options. I personally don't tolerate meds well at all, so ended up with LP shunt.

It's my understanding that they don't know much about fibrous dysplasia or it's causes. I know it's a weakening of the bone, but not sure how or if it could be related to csf pressure/fluid. I hope you find some answers at your next appt.

I think it was a great idea to include your husband in your appts. People don't often understand our pain because we don't look sick, so validation from a professional can be helpful. It's also nice to have another person gathering info..they may pick up something you miss or at least be able to help you process through it.

You can look through the guides & print outs here for suggestions on how to talk to the neurosurgeon. You may also want to visit www.ihrfoundation.org for more info regarding IIH & related conditions.

Good luck, & keep us posted!
Take care,
Julie

Hi Danette and to the group!

I'm glad your husband came with you to the appointment and I hope he has more understanding now, here is our useful guide to a new way of life http://www.ihaveiih.com/t298-i-have-iih-a-new-way-of-life and we have a guide to informing people about your IIH which you might find useful if your struggling to explain http://www.ihaveiih.com/t299-i-have-iih-guide-informing-people-about-your-iih Your husband can always join and post in the relatives section if he wants to talk and get support too.

I'm glad that you have found Diamox helpful and I hope you continue to be successful on medication.

I look forward to reading your future posts xxx

Thanks everyone for the responses. It is helpful to know that there are others who understand what I am going through. I have actually felt "normal" for the past 5 days on the lowest dose of Diamox. I almost don't want to increase the dose. My neurologist told me that I can increase more gradually so I will probably give it another week to 10 days before I go to 2 pills a day. I have the tingling hands and feet a few times a day but for now it only lasts a short time and then goes away. I haven't experienced the tiredness and exhaustion yet like I did when I tried Diamox before more quickly. It was very difficult because I teach third grade and need to be alert and on top of things all day. I would come home and simply crash.
I have made a connection with a local woman who has IH for 20 years due to a benign tumor. She has had a shunt for as long. She has also had 12-13 different surgeries for various reasons due to the shunt. She has a positive outlook and is thankful to have found a reason for her headaches and vision problems all those years ago.
I found the guides on this site very helpful so for recommending them. I also joined the IIHRF. There is alot of useful information there as well.
Again, for your posts and advice!
Danette

Hi Danette,

I'm so glad things are going so well on Diamox and you were able to connect with someone who has IIH. Meeting up with other suffers is a inportant way of getting support.

IHRF is a great resource of information!

Keep us up to date with how things go. :flower:

Hi Danette! Welcome to our group!

Glad to hear that things are going well with the Diamox. I was diagnosed in November 2009 and have had pretty good success with Diamox myself. I did work up my dose gradually at the beginning, just as your doctor is doing with you now, and that seemed to go pretty well. I eventually worked up to a maintenance dose of 1500 mg, but have recently been able to cut back my dose to 1000 mg after some weight loss. Which has been great, as my side effects were horrible at the higher dose and much easier to manage at this dose. Though I have heard of some people on much higher doses than 1500 mg and they do fine, so it all depends on the person, I suppose. What dose is your doctor aiming to have you at?

I hope it continues to go well for you! By the way, where in PA are you? I'm in Delaware, so possibly could be another (semi)local IIH friend. If you did happen to be close by, you would be the first person I'd ever meet in "real life" with IIH.

Thanks Bananasmom.
I am currently on 125 mg once a day with the intent to go to 250 mg a day, and eventually 375. I'm not sure if my dr. expects me to get up to 500. I'm sure it depends on my results. I'm hoping since I am doing fairly well on 125, that 500 won't be necessary. Of course, a spinal tap will ultimately be the determining factor, unfortunately.
I don't understand the whole weight loss relationship to IIH. I am not obese and although I could stand to lose 10 lbs., any more than that would be criminal. And I have heard of even overweight women losing weight through gastric bypass and other means with no end to their headaches and no relief of the pressure. I think that is a male doctor's version of a perhaps secondary cause of this condition.
In any event, I am thankful for the few days of relief I have had so far and am hoping for many more to come.

Hi Danette,

There is no guarantee that losing weight will ease your symptoms as not for every IHer their weight is their trigger. The results of IHers losing weight vary from some seeing no difference, no change to feeling worse so there's no guarantee. All doctors in every department tell you to lose weight, if you can lose weight it can be beneficial for your general health but there is no certainty that your symptoms will get better.