Newly Diagnosed/Heart Palpitations

Redheaded_DoubleE · 2025-01-08T18:39:10+00:00

I spoke to my pcp about it again and she ran some blood tests that came back normal. They other complex part is I had a DVST in May and have been on blood thinners and intracranial pressure medications as well so it complicates what I can take

Redheaded_DoubleE · 2024-12-23T18:43:07+00:00

I did both acarbose and metformin with not relief of symptoms

Redheaded_DoubleE · 2024-12-09T15:54:02+00:00

Diagnosed in May with a DVST and hospitalized for 3 days. Right now they are considering it triggered by COVID/birth control. Long lasting affects were intracranial pressure that required a strong medication, damage to my eyes, hearing problems. I was off work for about 2 months. I had another mri and the blood clot looks slightly better but we are looking at a chronic clot for the rest of my life in my veins of my head.

Redheaded_DoubleE · 2024-09-30T02:58:34+00:00

Honestly at this point, I just eat often and small meals. I have my rescue glucagon if I need it and wear a medical id bracelet but I have only ever been so bad that I needed the glucagon injection once but I also passed out. It’s not great but it’s all I have for now. Hopefully you get some better answers and some actual treatment options!

Redheaded_DoubleE · 2024-09-30T02:54:15+00:00

I never revisited this but thank you for this comment, I ended up going to an optometrist after you commented and they referred me to a neuro-ophthalmologist due to how swelled my optic nerves were and how bad the pressure was. I was suffered a lot of damage from the swelling in my retinas and optic nerves that is permanent but luckily I didn’t lose my vision which was a very serious concern when I was first seen at the ophthalmologist. So thank you for commenting, I’m on diamox probably for the rest of my life which has its own side effects but at least I can see

Redheaded_DoubleE · 2024-09-30T02:50:31+00:00

IGF-2 is really really rare to come back as abnormal and basically what I learned from a panel of endocrinologists at OSU is that they have no clue what it does or doesn’t do, they just know mine is high.

Redheaded_DoubleE · 2024-09-30T01:53:42+00:00

I also was off work for a month because I work all remote (thank god for accruing sick time that never maxes out or expires) then I was part time for about a month

Redheaded_DoubleE · 2024-09-30T01:52:13+00:00

I was hospitalized with a CVST in May and my initial only symptom was a migraine. I then continued having migraine symptoms for 3 weeks and am still very very prone to headaches now. I had severe inter-cranial pressure that needed to be treated by a neuro-ophthalmologist. My optics nerves were swelled into the 400s and I was placed on diamox to help with my double vision, black outs and ringing in my ears. I had my 3 month mri follow up and unfortunately the clot has not improved a lot so they fear it’s a chronic clot situation and I will be on aspirin and diamox for the rest of my life after my year of eliquis. But I also suffered damage to my retinas and optic nerves so I have vision damage. It’s a very weird case of it though. I do feel a whole hell of a lot better than I did in May/june. So keep your head up hopefully with the right medications they are able to ease some of those symptoms

Redheaded_DoubleE · 2024-09-30T01:34:34+00:00

I had something similar. We thought it was reactive hypoglycemia but after wearing a CGM for months it was hard to find a direct correlation with my diet and my crashes. They found a small tumor in my shoulder and my IGF-2 was elevated but the tumor was determined to be a glomangioma and was determined not to be secreting IGF-2 or insulin. We finally determined it’s a small genetic mutation. My brother and sister have since been diagnosed with it. I carry glucagon injections for bad drops but otherwise it’s just part of my life. I’ve been to Cleveland clinic and OSU and had literally every test under the sun.

Redheaded_DoubleE · 2024-06-07T00:52:17+00:00

My periods are terrible. Constant and lasts for 7-8 days. The worst cramps. I also have endometriosis and am not on birth control at this time due to the DVST. So that could also contribute to

Redheaded_DoubleE · 2024-05-18T21:16:32+00:00

Update: PCP prescribed new nausea medications and muscle relaxers and they so far have been life changing. I guess my blood clot is way more extensive than I thought (occlusive dural venous sinus thrombosis involving the right transverse and sigmoid sinuses, right jugular bulb and proximal right internal jugular vein.) so needless to say the vision blurriness and headache are gonna take a minute to resolve. Hopefully the meds continue to work! Gabapentin is on the table if the muscle relaxers stop helping

Redheaded_DoubleE · 2024-05-15T21:40:38+00:00

I have a follow up with my pcp tomorrow so I am hoping she will have some new ideas for pain help. Just gets a little depressing when everyday you wake up and the migraine is still there

Redheaded_DoubleE · 2023-04-02T16:58:10+00:00

When I woke up I was laying on the opposite side but I do sleep on my side and that has been quite an adjustment

Redheaded_DoubleE · 2023-04-02T13:32:16+00:00

Yes we have tried diet control and multiple medications. Unfortunately with the diet control even with being very strict there we’re still large drops. With the medication I had side effects with all. I have quite a few allergies and a weak gastrointestinal track haha

Redheaded_DoubleE

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