Connecticut support for IH

02/07/2018

I can't be the only one who hates this kind of heat and humidity... my head has been throbbing, I am nauseated and my left eye is blood shot & swollen since Saturday.. Anyone else?

08/09/2017

Friends and family September is INTRACRANIAL HYPERTENSION AWARENESS month. Reading this means you are at minimum aware of my condition and at most you suffer right along with me.
I want to thank you all for the support you continue to show me, your willingness to accept my mood changes, pain fluctuation and unpredictability say much more to me than you know and continue to offer the same to those of you that deserve the same.

04/09/2017

Hello fellow IHers in CT! I hope you are all doing well (as well as any of us can expect anyway). Sorry it's been so long for a post.

I was wondering how long any of you have gone between flair ups? I have been waffling back and forth the last 10 months between horrific daily headaches and bareeable daily pain. Now I am not in a good place.
1. Lack of energy
2. Excruciating pain in my head & eyes
3. Worsening memory
4. Hightened anxiety
5. Blurry vision
6. Market changes in peripheral vision

Typically I will fake it until I feel better, but I can't anymore. Thursday I visit a new neuroopthmalmologist because my NS is 95% sure I will be having a new shunt placed..
It's been almost a year without one...
When does it get better????

09/02/2017

I have had an IH diagnosis for going on 5 years and not once had paps, it was suspected only once. I have never had any of my physicians say my diagnosis was otherwise either, my primary doc, my neurologist (3 - 1 change because of proximity, and 1 because he felt he wasn't best to help me) my neurosurgeon, my neuro-ophthalmologist or even my therapist, I have an incredibly supportive team and even more supportive family.
When I read posts in support groups about people struggling with doctors disputing and even demeaning patients simply because they don't understand the disease it truly hurts my heart. If possible I say find new docs, be your own advocate...I wish you well..

06/02/2017

So sorry it's been so long since I updated or posted anything. Life has been super chaotic as I am sure you all relate too. Feeling so much worse but I have been doing my best, for my family and friends. I thank god every time I wake up...
Temperature check time:

04/11/2015

Hello everyone!!
I am looking to get input from some of you locally who have IH. We have begun a support group (with one meeting successfully done) and I was wondering how you all would feel about an IH family support group?
We have this page I am trying to get up and running, but also perhaps even if we meet once a month just us, but every 3 months or so meet with families, spouses, children, close friends even.. They suffer right along with us and could use support too..
What are your thoughts CT IHers??

01/11/2015

https://www.facebook.com/johanna.tessman/posts/10206769705733783

This is AMAZING!! I think it's a great place to start affecting change here in CT for rare diseases. I emailed John Hampton while I was in the hospital for this last surgery, I would love to be involved. I haven't heard back yet though so if any of you feel like it, email him and tell him about me (the fundraiser, the news, articles etc.) maybe he needs a reminder?

John.hampton@cga.ct.gov

01/11/2015

https://www.facebook.com/johanna.tessman/posts/10206768051452427

01/11/2015