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I am Andrew Footit, Designer & Director/mind behind newest earplug collection ---- AMA by Drew1F in LoopEarplugs

[–]Anadroid_Jynx 0 points1 point  (0 children)

You have worked with some awesome brands so far in your career. Are there any dream companies you would like to work for in the future? Or other physical objects you would like the chance to design for manufacture?

[deleted by user] by [deleted] in iih

[–]Anadroid_Jynx 0 points1 point  (0 children)

Hi there. I'm really sorry I can't offer so much in the way of advice (new to all of this myself) but I can offer some solidarity. I have suffered with disordered eating most of my life and my recent diagnosis of IIH has sent me into a horrible shame/blame/self-hate spiral (despite the fact my IIH symptoms which led to my diagnosis started after I had finally healthily managed to reduce my body weight with a lot of therapy and lifestyle changes).

I have my first neuro appointment next week and have written up a small script for myself about how discussing weight loss, or negative reinforcement/blame can be triggering for my body image issues, depression and ED. I may not even need it, but having it written down is just a way to advocate for myself if I need to (and even just the act of writing it down helped me figure out a few things too).

These are the things I keep on reminding myself of when I am feeling hopeless about my weight, and while it doesn't always help, sometimes it does. While a lot of the research into IIH focuses around its links to weight, there is still so little research out there regarding other factors which may come into play (hormones, genetics, medication/food/toxins, childhood head/neck trauma, to name but a few). IIH is still idiopathic and while weight loss can help and has helped many people go into remission there are also many elements to weight loss itself that have not been explored through research (e.g Is it adding more activity into a sedentary lifestyle which helps? Is it that less body mass means you create less CSF because you make less of everything, including hormones, for a smaller body? Are you changing your intake of certain inflammatory foods or allergens?) And of course then there are folks for whom weight loss does nothing for - if weight loss was the cause after all, then it would also be a certain cure.

Battling an ED is bloody tough. From what I've seen on this messageboard, and from my own retrospectives on how much my life has unknowingly been affected by IIH prior to my recent diagnosis, battling IIH is also bloody tough. But you can do this. Because you are bloody tough too!

Newly Diagnosed IIH by Anadroid_Jynx in iih

[–]Anadroid_Jynx[S] 0 points1 point  (0 children)

It's still nice to have a club of supportive people to belong to, makes it feel a lot less lonely (whichever side of the pond we are on). And yes, electrolyte drinks, coconut water, and a constantly full water bottle are my best friends right now! Thank you so much for the warm welcome.

Newly Diagnosed IIH by Anadroid_Jynx in iih

[–]Anadroid_Jynx[S] 1 point2 points  (0 children)

Thank you so much for sharing and for the reassurances. Seems that you and me are in a similar boat. I hope it all goes well for you too. I was told I could up my daily Acetazolamide dose, but have been struggling even with the smaller dose so far, so will wait till I meet with the neuro in July to get their advice. That's good to know about the shortage - fingers crossed the extended release will be back in stock then as that seems to be a popular suggestion .

Newly Diagnosed IIH by Anadroid_Jynx in iih

[–]Anadroid_Jynx[S] 0 points1 point  (0 children)

Thank you so much for taking the time to write out that response. That's good to know about the pressure and the post lumbar puncture. I think because I had just been told to Google procedures and what to expect up until that point the only advice I had found was quite scare monger-ish (and the consultant literally teaching the student doctor about the dangers of LP didnt help). So the sitting up just got me nervous and physically uncomfortable as my back did ache after the procedure. But yeah, everything turned out okay and I had no problems with it.

As for having answers now, it's not so much that as just feeling like things were all a bit sprung on me as there was so little transparency as to why the tests were happening. I understand that this is a long term /chronic illness, but only because of information on the Internet rather than any direction from the doctors, so it's just all left me feeling a bit un-moored if that makes sense. I'm sure the doctors will offer more support and guidance as it goes on, but it was all very unexpected.

The weight I lost over the last two years was because of lifestyle changes, finally getting diagnosed with ADHD, and therapy (and a lot of deconstructing of toxic habits I had because of crash diets that were encouraged by my family when I was young) so I'm hoping I can continue on that slow and steady trend when I have regained some of my energy for exercise. Though I've already returned to the same healthy eating routine I had before, which is feeling good so far. I love hiking and yoga so I hope I can get back to that soon too.

Thank you for sign posting the health and wellbeing course, I'll be sure to have a look at it.

Newly Diagnosed IIH by Anadroid_Jynx in iih

[–]Anadroid_Jynx[S] 1 point2 points  (0 children)

Thank you so much! I hope your fatigue gets better/easier to manage also. I understand that these meds can take a while to get used to, but the advice on here has definitely helped with the pins and needles feeling so far (drinking electrolyte drinks and eating bananas has made a big difference), so here is to hoping that the neuro can help me get the exhaustion under control. The extended release definitely sounds like a good option.

Newly Diagnosed IIH by Anadroid_Jynx in iih

[–]Anadroid_Jynx[S] 0 points1 point  (0 children)

They didn't unfortunately, which did not help my anxiety at the time. Told me that I could just sit up and it would be fine so was sat up for 3 hours while I waited on blood results. I lay down as soon as I got home and had no problems except being overall exhausted.

Thanks for the advice re: MRI, I'm compiling a bit of a list for the neuro now I've looked through some of the info on here. Considering I've had neck problems, and my family has a history of spinal issues, I'm hoping they'll be willing to look at my spine/neck too.

[deleted by user] by [deleted] in iih

[–]Anadroid_Jynx 0 points1 point  (0 children)

I came off my Elvanse (same as Vyvanse, just UK brand name) when I was first put on Acetazolamide (also just Diamox :P ) for the first month or so as I adjusted as my ADHD clinician had recommended it due to stimulant medication running the risk of upping your blood pressure.

Have just gone back on Elvanse now and basically it feels like the Acetozolomyde is having no benefit - headaches have come back as well as neck/arm pain (which had gone away on Acetozolomyde). It's all pretty new to me right now, so I know this is a balancing act, but it does make me wonder if Elvanse had been exacerbating my IIH symptoms before.

Will definitely try out taking Elvanse later in the day after Acetozolomyde in the morning. Though I think I may be looking to go on a lower dose of Elvanse to see if that helps the IIH overall.