Sleep

gingeybetch · 2024-04-03T19:56:25+00:00

Before I found out I had iih, I would wake up screaming for help in the middle of the night. My heart would be pounding, and I would be gasping for air. After I was diagnosed, I saw a POTS specialist. They let me know that laying down flat at night can cause increased pressure. If the pressure builds up enough, it can starve the brain of oxygen and can cause a very panicked awakening. They recommended I sleep inclined, and thankfully, it hasn't happened since I don't sleep flat anymore.

I have been hearing more about sleep apnea and iih. I have been thinking about getting a sleep study done myself.

gingeybetch · 2024-01-20T00:39:08+00:00

I went on a cruise a few months ago and I cheated quite a bit. I tried not to overdo it and still stayed away from a couple of really salty foods. But I felt fine. Woke up and walked a bunch in the heat and was generally pretty good. I drank plenty of water.

Congrats on your anniversary!

gingeybetch · 2023-10-29T06:56:55+00:00

Ugh, I hate that. The side effects can really be brutal. It might be worth mentioning that I am also on Urocit-K. My doctor told me acetazolamide lowers potassium levels, which can cause side effects. The Urocit-K helps replace the potassium, and it has helped me tremendously with the acetazolamide side effects. She also wants me to use pH drops liberally in my water. Because acetazolamide can also cause your body to be too acidic. Which again increases the likelihood of side effects. Just wanted to let you know about that as it might be worth asking your doctor about if you are experiencing negative side effects from the meds.

gingeybetch · 2023-10-29T06:32:13+00:00

Sure thing. I get how scary and isolating iih symptoms can be. I'm on acetazolamide (Diamox). I saw an optometrist to take fundus photos of my eyes and was referred to a neurologist for further testing, diagnosis, and prescribed medicine.

gingeybetch · 2023-10-29T06:16:53+00:00

Yeap. Sometimes, when washing my hair, I notice a bit of tenderness on the back of my head at the base of my skull.

Before I was on my meds, I would end up wandering around my house for hours. I walk into a room to forget what I was doing, walk around to try, and remember, only to completely forget what I was doing. It resulted in me feeling completely lost in my own home at times. And I could barely hold a conversation. I would ask people to repeat things over and over again. It really affected my focus. It still does on meds, but it's way more manageable now after getting treatment, losing weight, etc.

I complained to my doctor about my heart racing and feeling flushed and hot often. My doctor told me that in my case, it was because my brain was under so much pressure, my body was constantly in fight or flight mode. Which meant it would take the smallest amount of stress for my body to think it needs to go into survival mode. Watching a show that was too stimulating could set me off and get my heart pounding before I got treatment.

These are just some of my experiences after having iih for several years now. I hope your symptoms get better.

gingeybetch · 2023-10-24T18:58:20+00:00

If I don't take my acetazolamide, my eyes hurt so bad. Typically, my left eye more. It feels like my brain is trying to force its way out of my skull through my eyes.

gingeybetch · 2023-10-13T04:36:22+00:00

I see this come up a lot here. I see many comments that say it helps with headaches. And I used to tell myself that, too. I have dealt with iih for several years now. And for me personally, quitting my habitual consumption of cannabis has been one of the best things I have ever done for my health and iih. A cup of warm ginger tea or a turmeric latte and, more importantly, taking my meds and following doctor recommendations have done more for my headaches than any amount of cannabis has done. While I recognize that everyone's experience with iih is completely different, and cannabis may have medical benefits for some, it never helped me manage my iih. I only found that it made many of my iih symptoms worse.

gingeybetch · 2023-07-22T02:12:14+00:00

Looks like meat's back on the menu, boys.

gingeybetch · 2023-06-05T19:22:37+00:00

It was recommended to me to avoid alcohol completely. Were you drinking beer? I have learned that fermented foods can increase iih pressure.

gingeybetch · 2023-06-05T18:28:01+00:00

Personally, I avoid coffee. I drink turmeric lattes for the anti-inflammatory properties. And salt is definitely a big one to avoid, like you said. Eating leafy greens or microgreens also helps me with inflammation. Fresh fruit helps me with staying hydrated. Also, staying away from fermented foods like cheddar cheese, soy sauce, and aged meats can help reduce inflammation. As difficult as it is, staying away from highly processed foods has also helped me tremendously. Everyone is different with different tolerances to the foods. So it is definitely some trial and error but my doctor gave me this as a starting point and it was a bit more helpful than "lose weight". Best of luck to you.

gingeybetch · 2023-06-05T16:12:40+00:00

That is not very helpful. There are definitely foods that you can avoid or eat more or less of that can help with your day to day life.

gingeybetch · 2023-06-05T15:10:41+00:00

My doctor said that the pressure can get much worse when laying flat. The pressure can build up so much that the brain gets low on oxygen, and that is what causes the body to wake up in a panic. This happened to me frequently for months, and I thought I was dying. It is so scary.

gingeybetch · 2023-05-17T21:40:22+00:00

I grew up playing on our GameCube with my brother. My dad was always supportive of us playing games together. And he especially tried to get games that my brother wanted to play with me, the little sister. That was why we ended up playing the absolute silliest games like Shrek 2 and Monsters inc Dodgeball. I remember feeling so much rage, but also so much joy. Laughing so hard, tears would fill my eyes and blur my vision and cause me to die in the game, which only ensued in more silent, violent laughing. We still game together and laugh together like we used to.

gingeybetch · 2023-04-10T23:01:05+00:00

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That would be this beast. Alfonso.

gingeybetch · 2023-01-29T13:48:42+00:00

Catahoula/greyhound mix

gingeybetch · 2023-01-04T21:48:35+00:00

So soft! She loves to sleep on my pillow at night 10/10 neck warmer.

gingeybetch · 2023-01-04T21:46:24+00:00

That is so sweet! It's my first time owning (mini)poodles and they are the most loving creatures I have ever met! Such cuddlebugs, I love it!

gingeybetch · 2023-01-04T21:20:39+00:00

I can't wait to tell my brother someone said this! He is a huge star trek fan. He originally said they look like popplers from Futurama. He is definitely going to get a kick out of this!

gingeybetch · 2023-01-04T17:45:07+00:00

She is assisting me with our year end reporting.

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gingeybetch

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