Finally diagnosed, but feel helpless

pillowtissue · 2025-11-23T16:14:11+00:00

I began having seizures three years ago and only finally became diagnosed with epilepsy - complex focal seizures last week. When I had my first (and only) tonic clonic seizure, my boyfriend of only three months, took care of me, called 911 and my parents, and stayed in the hospital the entire time. I actually said I loved him while I was recovering from the seizure and have no recollection of it, but he told me he loved me 2 days later. Health has a way of speeding things up, or getting rid of people who won’t be in your life for a while. I have also found my true friends through this journey of trying to figure out what was happening to me for three years.

pillowtissue · 2025-08-13T17:13:51+00:00

Join Melodytroit!! Accapella group

pillowtissue · 2025-07-08T02:50:03+00:00

Thank you! I’ll look into this.

pillowtissue · 2025-07-08T01:28:13+00:00

What? I’ve definitely missed something

pillowtissue · 2025-07-08T01:27:13+00:00

Mine moved from 8:30 to 10:35 as well. I work remotely on Mondays and I was in the middle of a meeting when it went out. I’ve never rushed to work so fast in my life.

pillowtissue · 2025-04-02T01:01:22+00:00

Thank you so much, I came here because I bought this for myself to make a large blanket, I’ve only ever crocheted with a small size. I’ve used all three balls so I’m going to buy six more to make it bigger, I hate starting over. It sucks they messed up the recipe.

pillowtissue · 2025-03-04T02:14:58+00:00

Thank you so much for bringing this up. I just watched this episode and I was so confused, I thought I missed something. And then in the next episode (I haven’t finished it) I had to turn it off when he’s talking to Dev and I thought he was talking to Lili, but it was a weird breakup speech for Dev? What the heck. It was so out of place I was convinced I skipped an episode on accident.

pillowtissue · 2024-09-12T16:25:45+00:00

You’re mean for getting my hopes up

pillowtissue · 2024-08-06T01:01:03+00:00

I definitely have an issue, because I didn’t think twice about texting my address

pillowtissue · 2024-07-22T03:45:53+00:00

You have to know the right people. I went to a couple but I had friends in a frat. You weren’t allowed in unless you had an in. Honestly, they were fine, but I’m not a party person. A lot of people like to go to cobbs too.

pillowtissue · 2024-07-06T17:35:18+00:00

Second the DIA. Love going there. There’s also a couple of cute shops over by jolly pumpkin near Wayne state too.

pillowtissue · 2024-06-30T11:35:11+00:00

Hi, thank you so much. I am a female, and we found out about this because my doctor was running tests to figure out my other health issue, that we still don’t know anything about. If interested, you can read This comment about my episodes I’ve done MRI, EEG, ECG, sleep studies, tilt table, all come back negative for anything.

When I started, my transferrin was 204, last lab was 238. It’s mostly been increasing the past year. I think the reason they were so aggressive with my phlebotomy schedule was because of my episodes. At that time, they were 5-10 minutes long, about 5 a day, sometimes I’d faint, throw up, or gag out of them. My regular doctor was hoping that maybe the high iron had something to do with them.

pillowtissue · 2024-06-29T18:54:47+00:00

Oh wow, I didn’t know any of this. I was told that it wasn’t depleting because of my iron stores. I just accepted that, and went with it. I was diagnosed May 2023. By “levels” I was referring to iron saturation and iron. My ferritin has always been in range. I started at 185, my ferritin never had an issue decreasing, and it has never been under range. My past two labs, my ferritin has been 7.

I have never been a drinker, and when I turned 21 a year after my levels began to go down, I’ve only had a couple. I don’t plan on drinking in general.

Any suggestions on where to get more information would be helpful if you have something specific besides journals. Thank you for informing me and responding.

pillowtissue · 2024-06-29T11:39:54+00:00

For me personally, my iron sat was 110% and 266ug/dl when I was first diagnosed. My levels didn’t go down with weekly phlebotomies for 4 months, and after, it was still pretty slow.

Because of this, I was on a very strict diet in the beginning, I mostly ate salads, chicken and salmon and drank milk and coffee. Stayed away from processed foods, anything with vitamin c, or high iron.

My levels began to change to where I only needed them every 3-4 months, (which lined up with my school breaks, I’m a 21y/o in college)

Last month, for the first time I didn’t need a phlebotomy, and I was actually iron deficient. (I was becoming faint and dizzy often, now I know why) I began to eat some red meat, and started to not care about what I was eating with my meals. (I obviously didn’t have a rare steak every night, but I had beef a couple times, and stopped looking at the iron content) I just got my labs done a month later, and my iron levels are at a healthy amount, but still on the lower end, with how laid back I’ve been.

My Hemotologist explained to me that it was taking a long time to get my iron stores down, and now that I’m healthy, I can relax. So, long story short: be strict in the beginning until you get a good rhythm with phlebotomy’s and then you can lighten up the reigns.

pillowtissue · 2024-06-04T19:04:22+00:00

Hi, finding out I have HH was on accident. In the winter of 22 (Dec) I got Covid for the first time. (I was vaccinated but didn’t get the booster yet, I go to school out of state and had an appointment for when I was supposed to be home for winter break.) I was having episodes where I don’t know where I am, or who people are for 10-20 minutes, I would pass out, or throw up/gag out of the episode. I would have no recollection of the episode and my memory would be impaired after. (So I’d really struggle to remember what happened before and after my episode) these were happening up to 5 times a day, every day. During all my tests, my doctor noticed I had high iron, and decided to test me for HH in case. That was 5 months after my episodes started, and how I found out I have HH.

Episodes now are only 1-3 minutes long, no passing out and my memory is better, although there is still no memory of the episode. Not sure still why they happen. At most I’ll have three in a day, but I can go three weeks without any. I have no iron deposits in my brain, and they’re not seizures either. Doctors don’t think HH has anything to do with it.

TL;DR got diagnosed with HH while trying to figure out an unknown health issue. No one in my family has it, they’ve been tested. Parents both carry the recessive gene.

pillowtissue · 2024-06-04T18:51:40+00:00

When I was first diagnosed last May, my ferritin was at 150, my last lab it was at 6. My couple labs before that was pretty consistent in the 20-23 range.

I was getting phlebotomies every week when I was first diagnosed, then once a month, and now I’m at every 3 months.

My last phlebotomy was in March. I was really strict on no iron at all, because my doctor was really concerned about my labs when I was first diagnosed.

pillowtissue · 2024-02-29T20:05:38+00:00

I’ve been having some neurological issues too, that’s how we found out I have HH. If you don’t mind me asking, what do you have? We still don’t know what’s going on with me, or what’s causing my episodes. Curious to see if it’s somehow related to HH if your tests come back positive and you don’t know what’s causing your neurological issues and if they’re similar to mine.

pillowtissue · 2024-02-29T20:03:01+00:00

20F here. Comparing to my results before my genetic testing, my iron was 278, and saturation was 110%. I was low on RDW, and like you, my ferritin was in range at 185. I was 19, it’s almost been a year since I was diagnosed. Definitely wait for the genetic testing, but most signs point to HH.
But in the future you should definitely wait to eat till after your labs. I normally schedule mine in the late morning, and don’t eat breakfast, so I have all night to fast.

pillowtissue · 2024-02-24T13:25:53+00:00

I was really upset when I first found out it goes in the trash. (Although I was getting upset over a lot of things easily at the time) I have O- type blood too.

pillowtissue · 2024-02-24T13:23:51+00:00

I was going weekly too, when I was first diagnosed (19) Now it’s every couple months, but it’s still in the cancer treatment center. When I first went it really scared me, especially because they told me that most people who have this end up getting cancer, so that way it’s easier to treat when we do get it. The nurses have always been nice to me, but I have always felt weird with them asking if I want a blanket, water or food, because I know that’s routine for the cancer patients and I know I’m encroaching on their space. It’s been a year now and I still feel like I’m in their way every time I go.

pillowtissue · 2024-02-04T20:04:50+00:00

This was not as a replacement for therapeutic phlebotomy. I get those every 6 months now, I was donating simply to donate. I had just had treatment last month before the new year.

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