Hi everyone. I haven’t been on much. My brain fog has been pretty scary lately, and it’s keeping me from doing much that requires concentration outside of my daily parenting and household chores. I’ve also had this weird all-over body weakness that I hope goes away with surgery. My surgery is scheduled for February 19th with Dr. Hackman. I haven’t booked the flights yet. I might call Delta and see if I can use their emergency medical program. I have to call them anyway to book the first-class ticket for the way back.
But I wanted to pop in and ask any of the other members with POTs if they have experience with Florinef. My cardiologist wants me to start on it. It’s a steroid. When I asked him what the side effects were, he told me none, which seems to be what doctors always answer with when asked about side effects. Upon reviewing the side effects, Web MD says that increased intracranial pressure is a side effect. I already have issues with my head pounding and the feeling of blood not leaving my head at an appropriate rate, and I have that bulge above my left styloid. I sent a message asking Dr. Hackman about it. The nurse said she would pass the question on but that I should listen to my cardiologist’s recommendations.
I’m really scared. The severity of my symptoms increased enormously from taking Benedryl. I didn’t have the means to understand it then, but I think what happened was a lot of blood and histamines got trapped in my head. It’s when the severe visual issues began. They’ve subsided some since that incident, and I’m terrified that they will happen again. I have a good sense of humor and health with the intense visual snow syndrome of having trails and basically feeling like I was on psychedelics all the time, but I’m mostly able to drive again, and I don’t want to lose that freedom. Another side effect is visual side effects and eye building.
I don’t know what to do. I’m scared. I wish I could have taken the surgery they offered me next week, but I just couldn’t make it happen without going by myself. I’d love to get relief from my POTs symptoms; almost passing out multiple times a day is wearing on me.
Does anyone have experience with Florinef? I know everyone is different, especially with Eagles, and the trajectory of my styloids will be different than others. I just feel in my gut that taking this now, before surgery is a terrible idea.
If I were you, I’d pull out the official drug description from the FDA website, print it, highlight the intracranial hypertension fact, and told the cardiologist that I already have suspected IIH, and what other drugs could be used instead of this one.
Thank you. This is solid advice. I asked him if it was okay if I took it with the eagle syndrome, and he said yes, but the last time I saw him, he said he had to research eagle syndrome more. I’m not sure he did. I will give him some more specifics and ask for an alternative.
I’m not educated on POTS so advice I have (had one sided surgery with Dr. Hackman in November) is I too would question a drug that would increase IIH. Good for you for finding it. Since you are about 5 weeks out for surgery, is it possible to go into ‘sloth’ mode and do the absolute least you can while protecting yourself? And I understand with your children that may be a completely ridiculous statement… Have you determined an action or position that causes your symptoms? And if so, is it possible to avoid those completely? Read back through your threads, still doing electrolytes?
And are you on a good dose of magnesium daily?
From my call to schedule to surgery was 5 weeks and that time did go very quickly.
I had vasovagal syncope (supposedly… who really knows??) and my stylohyoid ligament was under unusual tension… I couldn’t look down or to the left without risk of a problem. Towards the end of waiting and on car rides, I would wear a soft neck collar which was helpful.
My experience with doctors who were not knowledgeable about Eagles was those appointments were useless. My PCP who walked through all this with me (and dealt with my multiple syncope events) said I knew more than he did about it and he gave me supportive care until surgery.
No need to answer above questions, just grasping for things that may help get you through.
All the best )))
Just went back over your scans … Wondering about the calcification on the right (?). Based on my experience with my non calcified but highly strained ligament, would it also need to come out (now) with bilateral surgery?
Completely agree with @Isaiah_40_31 that doing one side and seeing what remains is a good and conservative way to go. However, that looks concerning to my non-medical trained eye…(??).
For some reason, I didn’t catch that you had syncope events, or it’s the brain fog haha. Was that resolved with your surgery?
It feels as though my body is forcing me into sloth mode. We just got through moving and are still unpacking, and I feel like my body is yelling at me. I haven’t been the best with electrolytes, but my water intake has been good. Thank you for the reminder. I’m gonna grab a nuun if I remember to after I write this. As far as magnesium goes, I’ve never been able to find one that didn’t give me severe gastric issues, so I generally stay clear.
I’ve noticed when I unintentionally roll over to my left side while sleeping, I’m met with severe panic and gastric pain. I’ve dealt with it for years and never made a connection to which side I was lying on. But since my diagnosis, I notice when I roll over to my other side, it’s almost instantly relieved. My somewhat educated guess of hope is that the vagal nerve is feeling pressure from the styloid. I’m not sure what vagal branches connect or on which sides they are. I’ve been thinking about getting a pregnancy pillow to help me sleep on my back.
Also, looking down to prepare dinner is awful, but I enjoy cooking, and there’s always food prep when the kids get home. Maybe a soft neck collar would help in that situation. Looking down and to the left is met with awful stabbing pain. So my pits will be hairy for a while, at least the left one. It’s a good thing it’s winter.
Yes on syncope… have not had issues since surgery but they had settled a lot possibly due to restricted head movements (prior to surgery).
WOW on moving. That would have been impossible for me and while are a lot younger, that alone likely exacerbated your symptoms. It made sense to me that I was potentially hitting ‘things’ as I moved my head around. I suspect you could get relief with a soft collar if only for the reminder to give your neck a break.
Regarding magnesium, it absolutely can impact your system, but was and is necessary for me and my unhappy muscles. If muscle spasms are a problem, would look into lower dosages; I’ve used Natural Calm powder for its quick action and I can sip all day.
Dr. Hackman wants to remove the left side first because he said the trajectory is a lot more concerning and that it appears it could be hitting my spinal cord. The left is the side causing me pain in my throat and ear nearly constantly, along with all the other fun stuff.
He said if my POTs symptoms aren’t relieved, we can go back in and do the other side. He didn’t think any additional scans would give him any more clarity on which side was causing what symptoms other than the obvious pain caused by the left. I really trust him and I’m still concerned about the left side. Fingers crossed evicting lefty will be all I need.
Sorry, I’ve probably missed something in the thread, but why was it that you’ve opted to just have the one side done? I had one at a time & that was enough, so given your family situation if that’s your reason I totally understand! Praying that the time goes quickly for you & that you don’t get any worse
It wasn’t so much what I opted for as what Dr. Hackman wanted. He said the trajectory of the left was more concerning and wanted to see if it alleviated all of my symptoms before removing the other side. He said a lot of people are fine living with an elongated styloid, and since my pain is majorly on the left with the concerning trajectory, he wants to try just the left first. I’m hoping he’s right and all of my symptoms are improved with just the left, but I’m concerned about the right being completely connected. I guess we’ll see.
Wow. I have learned so much reading this thread. But first my one offer that I can recommend. I use prism glasses. When I put them on in the kitchen I can look straight ahead and I’m actually seeing what I’m doing on the counter. I also use them for anything like this typing when I’m lying down. On amazon if you type in " Horizontal Reading Prism Glasses" you’ll see several options. I can’t tolerate looking down and these have been a game changer (except that I need reading glasses so no good for that. I definitely do NOT recommend using any sharp object when you are first starting out - but putting butter on toast - absolutely!
I am on fludrocortisone (fiorinef) as my resting BP hovers below 100 and at times under 90. I am on a low dose, just enough that I still have multiple light headed issues a day but I can tolerate it. I had NO idea that it increases IIH, which I found out that I have!
I also have MCAS and require a whole regime of medication including 3 second generation antihistamines/day (like xyzol) and… I regularly need to supplement with… drum roll please… benadryl.
And my vision is a mess. no blind spots but literally the very little that I drive, the world is bouncing in my vision - my eyes just can’t seem to “hold” and so they bounce around - NOT safe. Used to be that I only needed to worry about driving when my head was really bad, but now I’ll get in when it’s as good as it gets and sure enough - bouncing eyeballs.
I am going through my own stuff at the moment and can’t wait to have time and capacity to do an update here. This group is just incredible. I’ve mostly been completely off but the opening blurb from your post caught my eye in my emaiol so I read the whole thing and wanted to tell you how much florinef has helped with my orthostasis… and then I read the rest.
I bet your surgery date will be here before you can blink. Mine is in April but I would swear that last week was June so… blink and you will be there. All the best and - get yourself some prism glasses - but take it easy as you learn what you can and can’t do with them.
Thank you for some good information @akc! Your surgery will also be here before you know it & I hope you get a wonderful outcome so you get your life back.
My ophthalmologist had recommended prism glasses for me, but the prescription ones were outrageously expensive to purchase through them. I’ll check Amazon; thanks for the tip!
Part of me wonders if Florinef would help. I have a lot of syncope episodes right now, especially in the morning. I think my fears are reasonable; I can be sensitive to medications. I do trust my cardiologist; he finally diagnosed me with POTs, and while he’s not an Eagle’s expert, he feels that it’s a possibility the surgery could relieve my POTs symptoms.
I’ve wondered if I have MCAS too. What led me to take Benedryl was that I have recurring eye issues generally when I have a stressful time. My eyes swell and get sores, then feel very itchy and dry afterward for weeks, along with burning pain and aching from my eyes and cheeks. In the last episode I had of this, my doctor prescribed steroids, Flonase, and allergy meds. I started taking those, and things seemed to be getting worse, so they told me to take some Benedryl. Within 15 minutes of taking the Benedryl, I was met with the worst headache of my life and feeling like my eyes were being pushed out of my head. I could barely open my eyes and saw bright colors, whether opened or closed them. Then, months of awful visual snow that mildly improved over time. I still have lots of static and after images, but at least there’s no trailing anymore.
My eyes are jumpy as well, but not that bad. My daughter’s vision bounces even worse and sounds similar to what you’re describing. She’s on a waitlist for vision therapy. Our ophthalmologist’s office has a really good one. I don’t know if you have one in your area, I was surprised it was even a thing.
I thank you for taking the time to tell me about your experience with Florinef. I checked in a POTs forum, and that seems to be the consensus there, too, so I think I will give it a try. If it gives me a headache or swelling feeling, that’s too intense. I will come off of it and take it easy the first few days.
I’ll be following along for your story, and I hope all is as well.
Oh wow! As in prism glasses like I described that let you look down instead of bending your neck? I was also prescribed prism lenses that realign your eyes if they are a little bit off but those are different. Thanks so much for the recommendation! There are only 2 neuro opthalmologists that come recommended and unfortunately neither is covered by our insurance. I was also recommended to do vision therapy, but there is also no coverage for that. And I just can’t afford to do things that aren’t at all covered by insurance and commit quite a price tag. I am hoping that when I have my surgery a lot of these things will be resolved. Like @Isaiah_40_31 was saying, the vagus nerve is often a player in these things. So hopefully that also means that pots symptoms will be helped after your surgery. When it comes to the florinef, I remember it took my body a minute to adjust to it. It’s been so long ago that I can’t remember the details, but if you start with the smallest dose, or even half of it, I’m sure that will help to minimize any adjustment. And like you said, you can always take yourself off of it as well.
I am so sorry that you have such intense episodes with your eyes. That must be so incredibly uncomfortable not to mention painful. It sounds like you might indeed have mcas. If you can get to somebody who specializes in and understands it well you might find that you get some really good help.
I had always been prescribed hydrocortisone because of course that should be a topical that can help with skin reactivity. It never did anything for me. Prednisone has had to be my go to. Well, it turns out that hydrocortisone never helped because I’m allergic to it. My MCAS Dr. did one of those skin patch tests and we found quite a few things that I have some allergies, including hydrocortisone. A nice little aha I’m sharing that because perhaps you’re having some of the same things with the medications that you’re trying to take.
I will hop off now but wanted to thank you (and thank you @Isaiah_40_31 ) for the recommendation. Take care!
Oh, I think the prism glasses I’m thinking of are the ones that realign your eyes and prevent migraines. Thank you for clarifying! Vision therapy isn’t covered for us either, so we’re on the waitlist to see what happens by then.
I hope we can both find relief in surgery.
Thank you for the insight on MCAS. I suspect my mom has it, too, as she always breaks out in hives for unknown reasons. She does not have MS, so doctors don’t seem to want to look into anything else for her. They continue to blame MS for everything.
Once I’m through with Eagle and have it rule out everything, I will look into MCAS further if I run into another weird eye flare. My first glance doesn’t show anyone in the area. One of the doctors in my primary care practice has POTs, so I can ask her since they seem to go hand in hand. If not I’ll contact My Medical Ally, they helped me find a POTs specialist.
I know it’s possible that one of the cranial nerves affected could be the one related to the eye epithelial tissue, so again, I have a random hope that treating eagles fixes my life. Lol.
Thank you for the support and insight. You take care as well!
I’m sharing that because perhaps you’re having some of the same things with the medications that you’re trying to take.