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Updated..dx confirmed. If you or someone you're close to was dx'ed with a serious chronic illness as a young person...


popmom
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1 hour ago, BeachGal said:

Bickman has YouTube videos as well. He researches insulin so is worth checking out.

This may be completely irrelevant, but I’ve been concerned for years that she and her identical twin might have PCOS. I’ve asked my own gynecologist about their symptoms (mainly that they can go months without a period), and I’ve been told it’s nothing to worry about at their age. I think the last time I asked was when they were 20 or 21. 

They have both expressed interest in seeing an endocrinologist in the past year—completely aside from the IIH. They struggle with seeing their peers eat and drink like crap, never exercise, and never gain a pound while they eat half as much, work out regularly, and still struggle to not be overweight.  I think I will encourage them both to get a referral. I just think there’s something going on. All of these hormonal, metabolic issues seem to be very intertwined. This is purely uneducated speculation on my part. Hopefully this Bickman will help me sort some of this out. I’ll pass along the name, book, etc to them.

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11 hours ago, popmom said:

This may be completely irrelevant, but I’ve been concerned for years that she and her identical twin might have PCOS. I’ve asked my own gynecologist about their symptoms (mainly that they can go months without a period), and I’ve been told it’s nothing to worry about at their age. I think the last time I asked was when they were 20 or 21. 

They have both expressed interest in seeing an endocrinologist in the past year—completely aside from the IIH. They struggle with seeing their peers eat and drink like crap, never exercise, and never gain a pound while they eat half as much, work out regularly, and still struggle to not be overweight.  I think I will encourage them both to get a referral. I just think there’s something going on. All of these hormonal, metabolic issues seem to be very intertwined. This is purely uneducated speculation on my part. Hopefully this Bickman will help me sort some of this out. I’ll pass along the name, book, etc to them.

This article explains one difference between PCOS and IIH. The role androgens play might only be part of the puzzle, too.

I think your girls would do best working with an MD who understands the role androgen plays and how it differs between PCOS and IIH. An MD researcher who studies IIH would be ideal.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6483000/

Active androgens are elevated in CSF (ceresbrospinal fluid) from women with IIH compared with controls.

In the current study, we provide potentially novel insights into potential mechanisms relating to the pathogenesis of IIH. We highlight a distinct profile of androgen excess in women with IIH and demonstrate an impact of androgens on surrogate markers of CSF secretion in a cell model, providing evidence for a pathogenetic link between androgen excess and increased ICP in IIH.

We show that women with IIH have a unique circulating androgen excess signature, with significantly higher active testosterone but lower concentrations of the androgen precursors DHEA and androstenedione than in women with PCOS or simple obesity. Previous studies of androgen metabolism in PCOS show complex contributions from both the classic (21) and 11-oxygenated androgen pathways (14). Women with PCOS have systemic upregulation of androgen-activating 5α-reductase activity, which converts testosterone to potent dihydrotestosterone (17), and androgen activation is enhanced in peripheral tissues, such as adipose (22). 11-Oxygenated C19 androgens are the major circulating androgens in PCOS (16). By contrast, we found that 11-oxygenated androgen concentrations in serum and CSF were not increased in IIH, indicating that adrenal androgen synthesis is not a major contributor to IIH-related androgen excess.

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16 hours ago, popmom said:

This may be completely irrelevant, but I’ve been concerned for years that she and her identical twin might have PCOS. I’ve asked my own gynecologist about their symptoms (mainly that they can go months without a period), and I’ve been told it’s nothing to worry about at their age. I think the last time I asked was when they were 20 or 21. 

They have both expressed interest in seeing an endocrinologist in the past year—completely aside from the IIH. They struggle with seeing their peers eat and drink like crap, never exercise, and never gain a pound while they eat half as much, work out regularly, and still struggle to not be overweight.  I think I will encourage them both to get a referral. I just think there’s something going on. All of these hormonal, metabolic issues seem to be very intertwined. This is purely uneducated speculation on my part. Hopefully this Bickman will help me sort some of this out. I’ll pass along the name, book, etc to them.

Anecdata: At least one person I know with PCOS has a pituitary tumor and weird headaches that I think stem from it. I think another was possibly having testing for pituitary issues.

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  • 4 weeks later...
On 5/30/2021 at 1:10 AM, popmom said:

 She's 23. I can't just swoop in and take over. I am taking lots of deep breaths. I am trusting God that He is using this for her good ultimately and His glory. I cannot spare her from all suffering, but I will not fail to advocate/be there for her. Just trying to find the right balance. 

I think you have good boundaries. It is difficult to watch children suffer and the urge to attempt to fix isn’t wrong or bad, but yes, boundaries are good. I feel most loved when someone asks me how an appointment went, how I feel about it, and if there’s anything they can do. There’s nothing they CAN do, but feeling loved and invested in? HUGE! I have a sister in law that always asks when my next appointment is. Then I get a text from her asking how it went. She thinks it is doing nothing. She is SO wrong. For someone to remember I have an appointment and ask how it went? Big deal! Especially when she’s done it over and over - over the course of a few years. It’s rare and special. There isn’t much you can physically do - but showing you care? Priceless. 

On 5/30/2021 at 1:32 PM, popmom said:

you are NOT bothering me. I'll take all the info I can get. 🙂 I was just googling about the weight lifting and it does exacerbate symptoms in some people. I'm just going to mention for her to pay attention to that.

Inflammation? If inflammation is a characteristic of what she has, look for studies with vegetarian based (not completely) and low sugar diet or autoimmune protocol/anti inflammatory, etc.  or any diet. Look for studies with turmeric. Look for studies with CBD. When I see a disease where physical exercise can exacerbate symptoms, I generally assume inflammation is a factor. 

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My oldest daughter was diagnosed with IIH two years ago after some problems discovered by her ophthalmologist.  She had a lumbar puncture with an initial high pressure.  She began taking diamox and began under care of a great neurologist.  His first advice to her was to lose weight.  We went to see a dietician at the hospital that have her some great tips and she lost the weight.  She has had no continued issues with her eyes and on a different medication but her neurologist feels that the IIH has resolved and her new ophthalmologist told us that it often resolves.  However, her neurologist told us that she is one of very few of his patients that actually lost the weight that she was told to lose.  He feels that this is no longer a problem for her.  I know this is just one case but maybe can offer some hope.  We elected to drive a bit to get a top rated neurology department and we have more than one docs eyes on the situation.  I always recommend second opinions from the best doctor you can access.  

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Dd24 was diagnosed with Type 1 diabetes at age ten.  She manages it super well and is also very driven.  But she will occasionally get thrown for a loop, emotionally.  It's hard to hear her crying on the phone because she doesn't want to check her blood all the time or is scared to go hiking with friends that she doesn't want to have to tell how to use a glucagon injector if she passes out.  It's maybe every 6 months she'll have this moment, and I cry quietly on my end too. 

For me, one of my children having a chronic, autoimmune, incurable condition makes me feel a) guilty that I somehow caused it or at the least couldn't protect her from it and b) that everything I deal with is relatively easy, compared to what she has to do and feel every day.

Edited by Harpymom
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  • 2 weeks later...
Posted (edited)

I have been hesitant to update this thread.  The past month has been quite the roller coaster. 

In June my dd came home and saw a neuro-opthamologist at Callahan Eye Hospital (UAB). He was wonderful and very thorough. They had much more sophisticated equipment. They were able to determine that she has not lost any peripheral vision. (Contrary to the regular opthamologist she is seeing in her college town) He also did an ultrasound on her eyes and found calcifications/deposits around her optic nerve that cause the appearance of papilledema (swollen optic nerves) when there is no papilledema. He dx'ed her with Drusen. He believed it was likely she didn't have IIH at all and that her migraines were likely stress induced. This was great news! He said that she should go ahead and have a lumbar puncture((( just to make sure.))) So she did--last Thursday. And her intracranial pressure was high. Opening pressure was 27. I don't know what the closing pressure was after draining. She will start Diamox this week. We both kinda felt gut punched that her pressure was high. 

She didn't have any complications from the spinal tap, so I'm very grateful for that. I didn't want her first one to be traumatic. She's in good spirits. That may change once she starts the medication. Fortunately, her neuro is starting her at a low dose. 

The Drusen complicates things. That in itself can damage her vision--as she ages. 

I am convinced her oral contraceptive caused this. Yaz is a terrible, terrible drug. Half the population won't get a COVID vaccine because of a risk of blood clots. Do these people have any idea how much damage oral contraceptives do to women each year? And doctors just hand out those scripts like candy and nobody bats an eye. Way riskier IMO. 

Edited by popmom
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  • popmom changed the title to Updated..dx confirmed. If you or someone you're close to was dx'ed with a serious chronic illness as a young person...

Thanks for updating. I had been wondering.

Fwiw, there are a number of case studies of optic disk drusen and idiopathic high ICP. The longer-term followup on those cases isn’t necessarily awful. It does tend to be a thing that pops up in your 20s—though there are some teen cases.

We have been having retina adventures at our house with a kid. Sincere best wishes to you and yours! 

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Posted (edited)
2 hours ago, prairiewindmomma said:

Thanks for updating. I had been wondering.

Fwiw, there are a number of case studies of optic disk drusen and idiopathic high ICP. The longer-term followup on those cases isn’t necessarily awful. It does tend to be a thing that pops up in your 20s—though there are some teen cases.

We have been having retina adventures at our house with a kid. Sincere best wishes to you and yours! 

Thanks for sharing that. I am hopeful that if this was caused by the Yaz, that it will resolve eventually with the meds. Her neurologist doesn’t think the Yaz is the cause. He thinks it’s truly idiopathic. 😞 I just can’t accept that right now. She doesn’t have any other risk factors. 

Retina adventure. I don’t think my dd would describe it that way. Maybe 20 yrs from now...

If she can tolerate the Diamox, she’s going to be ok. My mother’s neighbor has a shunt and so does her daughter. That’s encouraging to us because that’s worst case. It’s not the end of the world, but it’s a lot for a 23 yr old in grad school to juggle/accept.

Edited by popmom
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8 hours ago, popmom said:

Thanks for sharing that. I am hopeful that if this was caused by the Yaz, that it will resolve eventually with the meds. Her neurologist doesn’t think the Yaz is the cause. He thinks it’s truly idiopathic. 😞 I just can’t accept that right now. She doesn’t have any other risk factors. 

Retina adventure. I don’t think my dd would describe it that way. Maybe 20 yrs from now...

If she can tolerate the Diamox, she’s going to be ok. My mother’s neighbor has a shunt and so does her daughter. That’s encouraging to us because that’s worst case. It’s not the end of the world, but it’s a lot for a 23 yr old in grad school to juggle/accept.

Thanks for the update!  Glad the news is good and it does sound encouraging.

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Posted (edited)
4 hours ago, Scarlett said:

Thanks for the update!  Glad the news is good and it does sound encouraging.

Thanks to everyone checking in on me. I am optimistic. 

I am trying not to minimize the seriousness of it and her experience but also not borrowing trouble.

She started the Diamox today. Her hands are tingling like they are falling asleep. It's a common side effect. Hoping it gets better as her body adjusts. 

Edited by popmom
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I am not familiar with Diamox but do know from being on so many long term medications that a lot of the side effects can disappear after your body adjusts.  I am always telling newbies who get on hydroxychloroquine that a) it can make you feel nauseous for the first few weeks and b) it often doesn;t really help until 3 months in.  

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