So last night my husband and I are talking after he asks "What are you not feeling good?" before getting into bed. I say when am I ever feeling good. He then proceeds to tell me we need to go in another direction of getting help because my drs are not helping me and he doesn't believe I should be thinking about getting the shunt even though my neurologist hassaid that is what he would like the next step for me to be. My husband thinks that IH is because of a hormone imbalance and that going to a hormone specialist would do the trick. I express to him there are many reason people get IH-SIH and he stil persist that it all has to do with hormones, because how many men outther have IH barely any. And maybe it does have something to do with hormones for some people I don't know, I'm still only a yr into my diagnoses and not aware of all the possible things that could cause it. But he thinks it the only reason and that researchers should be spending their time on hormone Reasearch for IH and nothing else.


And I tell him I want to have another baby someday, hopefully sooner than later, and he tells me that I can't!!! I was more than a little POd at him I told him how dare you tell me that I can't have another baby, I said I know that right now is not a safe time for us to have another baby, but I will have another baby someday. he then say nichole just look at the statistics! It has to do with hormones and it will probably make it worse. And tells me again that I couldn't have another baby. Boy did that make me mad

And he knows having another baby has been something I have wanted for a little over 3 yrs now. A short time prior to my diagnoses we had planned to start trying for another baby, so I had my IUD removed. We both wanted this, and we're happy with making the next step in our life. But unfortunately I was diagnosed with IIH and was told that it was not a good idea to get pregnant while being on my medication.

At one point in are discuss/argument I told him don't you think I want such an easy fix as to go get some hormone shots or something, I yell him how I look at the pictures hanging on the walls all day everyday, they are pictures before I was diagnosed of me, my 3yr old daughter and my husband and how happy and healthy and how much fun we used to have, and I cry and wish for my life back. It breaks my heart every day to even think about my life before IIH took it over. I also tell him don't you think I want to be that same person I was before iIH! I know I am not the same person I was prior to my diagnoses and it hurts me everyday that I am not that person. And that I just want to be myself again and have our lives be the same as they were prior to IIH. I also tell him it is not fair for our daughter to have to go through this change as well, I think that more than anything is what breaks my heart.

Least to say I went to sleep upset with him and his stubbornness. He has done no looking up on IIH, he does not know hardly anything about it.

At one of my appointments with my neurologist, my husband suggests that maybe if I get pregnant that that would cure my iH. And I have told him that it doesn't work like that but he had to ask because he thinks it's all about hormone embalence. And the response from my neurologist was, and I quote! "I'm sorry, no your magical sperm will not work!" my mouth about dropped to the floor and I had to stop myself from laughing. And when we came out from that appointment my husband was a little frusturated with my drs response. Lol I thought it was the perfect response! Haha


I'm so frustrated because lately my husband doesn't seem to be understanding of me and IIH. He has more of an attitude about it. I'm sure he's tired of it just as I am and wants our lives be the way it was a little over a yr ago but the fact is its not.

There are very few people in my life family friends or drs that understand and truly support me and I can tell you that I don't think my husband is one of them, even though he has been there through everything with me, I don't think he truly understands even if he says he does.


I'm not sure what the whole point of this post is but I needed to vent and this is the only place I have freely to talk to. Maybe somebody else has been in my shoes and has some advice. Thx for listening :?:

This is the perfect place to vent..we definitely understand! IIH is such a difficult adjustment and no one can truly understand unless they've been through it. Plus, there's the whole "you don't look sick" aspect..it's tough, but you're not alone.

[You must be registered and logged in to see this link.] may give you some ideas on how to talk to your husband. I would also encourage you to visit [You must be registered and logged in to see this link.] Maybe your husband would be interested in reviewing the information w/ you. It defines IIH, symptoms, causes and talks about pregnancy, research, etc.

It's obviously a huge adjustment for everyone and a huge strain on a relationship, but keep communicating and hopefully he'll come around. Also, try to remember this is happening to him too..it's sometimes unbearable to watch someone you love suffer and be completely helpless, especially for a man. Ultimately, the choice is yours..it's your body, your pain..educate yourself, talk to your doctors, and do what's best for YOU. If you have any questions or need support, we're here!!!


Julie

Dear Nichole;
I am so sorry you are having these problems. I hate to tell you this, but my husband just moved out this summer. he has a lot of his own issues and problems but because of them he couldn't deal with mine. he has said "I just want to be with a happy girl". or, "if you weren't sick all the time". and, I did not want to have a second child but HE talked me into it, and while in retrospect I think I already had mild IIH before that pregnancy, it was with the second one that I started getting sicker, and finally "crashed" when my son was 20 months old. now I'm ill all the time and have two kids to take care of by myself, very much!

yes, there is a link to hormones but it is not completely understood at this point and there is no reason to delay treatment just because your husband has his theories. interestingly, men with IIH tend to have low testosterone. I tried supplementing testosterone but it did not help me and just made my hair fall out. I have a bald patch in the front now. and on testing, I am converting most of that testosterone to estrogen. high estrogen seems to be linked to IIH. so.....depending on how you metabolize it, testosterone supplementation is not necessarily going to help you anyway. we are WOMEN, so we will handle the testosterone differently than men. maybe testosterone supplementation would help a man with IIH?? and perhaps those men with IIH are converting their testosterone to estrogen?? this conversion occurs in fat cells so this may be a part of the link of obesity to IIH?

hang in there. chronic illness is very rough on relationships. I hope he will come around.
Deb

You are right to come and make this post, what better place to do it. I have to admit for a very long time I also believed it was a hormone thing, and made that point to my Neurologist countless times. In my case it turned out it was my hormones triggering the IIH, but it took 12 years and needing a shunt for them to finally agree it was, but only because there was evidence to support it.

We know from research done that there are many triggers but not one definitive one, which is why it's called Idiopathic. Your husband is obviously trying to find something to blame your illness on, and has picked the most obvious of them all, however, he really needs to be reading all the information about IIH, before rushing to judgement on his own. Try and get him to read the information on the IH Research Foundation website, also print the information off if you can, and give it him to read.

Hopefully once he's more informed he will realise that it isn't as simple as he thinks and that there is a lot more to it, and then take on a more supportive role.

Heidi

Thank you every one for your responses. I greatly appreciate it.

I am defiinetly going to be printing out information for him, my family and to help me talk with my drs.

I hope my husband comes around too, he has read up on the stuff on IHRF, but he's stuck on the hormone thing. This illness has defiantly has put a strain on our relationship, we struggle everyday with trying to make things work or how we can be better in our relationship.

I feel bad because I know I am not the same person I was before my diagnoses. It's not fair for him, my baby girl or me for that Matter. The only way I know how to react is to apologize that I am not that same person. It kills me inside that I'm not.

My nxt appt is October 9th so I hope I get something out of the appt that will help me


Thanks again, Nichole

don't apologize Nichole. you didn't ask for this. you can't help the changes in your personality. this illness changes the entire way that we interface with our environments. if it were possible for us to not change, we wouldn't. those around us need to grow up and learn compassion. unfortunately, that's a tall order. but I just don't have any more patience myself for the attitudes of those around me as I find it abusive the way they expect more of me than I am able to give. yesterday I gave so much that I collapsed by 7pm and could hardly walk. sorry... we have to take care of ourselves and be assertive about our boundaries.

I'm right there with you deb :/

i used to appolagise for the same reason all the time. but i got to the point where i figured i have the pain i have the blindness the deafness y in the hell should i add saying sorry everyday to my list of to do's x