Is there anyone that can further educate me on the combination of POTS, FND, and other medical issues one of my best friends is facing?

[ShallowWater]

One of my best friends is struggling with many medical conditions and has been diagnosed with having POTS, a FND, has what we call “episodes” in the middle of classes and at times will run out of rooms to avoid being made a spectacle of in front of others. They shortest amount of time they usually last is around 1-3mins, but the longest I’ve been around was 7mins and the longest I know of is 12mins along with many times being in the hospital for hours on end. She has 2 holes in her brain before any of these episodes started. The seizures she experiences were at first very tight and enclosed ones that didn’t stop during the episode, but then they changed into being cluster seizures and she wheezes and gasps for air between them, sometimes even stopping breathing. I’ve witnessed these only twice. One has 5 seizures and lasted 2-3mins, and the other she had 7 in the span of 3-5mins. Her heart rate will go from being in the 30s to being around 180-200 or more within seconds and constantly spikes and drops without warning. When first diagnosed she received sodium citrate to take and that seemed to make it worse, but her doctor continued to increase her dosage and I’m pretty certain she still takes it. Her occipital nerve is damaged from, if I remember correctly that this was the cause, falling down a flight of stairs during an episode a couple months back. She is scheduled a surgery for beta blockers soon and hopefully that will exonerate the pain in her spine. She is also currently in her 4th concussion. One of her more recent episodes occurred while in her room and curling her hair. The iron laid on the top of her hand the entirety of the episode and gave her what I believe was 3rd degree burns and nerve damage in her hand.These episodes happen so often that everyone knows her as “the girl who has seizures/passes out all of the time” and she has been restricted from going about having a normal day-to-day life. The causes of her episodes are various, but one that also serves as a warning sign in the lack of oxygen reaching her brain which causes her under eyes to get from a deep pink/red to blue/purple and gray. There aren’t many answers for her at the moment. I’m not as educated on the matter as I would like and even through what I know, what I’ve witnessed, what has been explained to me, and what I’ve researched on my own accord, I still don’t know all that there might be to know. If there is anyone that could help to explain in more depth what could be the case in all of this or what all of this plays a role in together/how they affect each other being all mixed together that would be a great help and so very appreciated. Any knowledge or experience with these things and anything similar to it is wanted. Knowing there’s no way to fix it for her hurts my heart but I want to be able to understand what it is she’s dealing with the best I can. Could I get help here please??

[Brokendeer]

Hi, firstly I must tell you I only have Motor FND which affects the movement of my muscles and gives me `Brain Fog' so seizures I can only speak about from other FND sufferers.

Your friend has definitely more than FND & POTS by the sounds of it and the most important thing that she can actually control is her stress/Adrenaline levels. These are what ultimately screw up the nervous system and cause brain signal overload with FND and quite possibly POTS too?

If you think of it that when the Brain signals get confused, which clearly they are severely compromised with your friend, the body will go into a `Fight, Freeze or Flight' survival mode to well... survive! This mode is prehistoric genetics and what has enabled us Humans to make it through to modern day without being eaten by predators etc. So the reaction cannot be stopped, only managed. To do that, your friend needs to try and keep on a routine of medium level activity/stress, not what the Neurologists call `Boom-Bust' cycles, where the Adrenaline spikes and causes the blood pressure to go all awry.

Now a person I know with FND Seizures was observed to go into a Hyperventilation state just before going into a seizure, this may be a trigger for your friend too?

Identifying Triggers of things, activities, foods, environments (even tight clothes) can be very useful in daily management of the conditions. She should keep a diary initially to see what makes things worse or better and then adjust her lifestyle to suit the best outcome. As for direct help for your friend tell her not to be embarrassed to ask for help with things. If she can learn to ask for specific tasks that need doing with the help of others, she and they will feel less of a burden and stressed, get the task done and everyone will feel good for getting it done.

Note: I am in UK, so not sure if applies anywhere else, but `The Red Cross' organisation used to do a support person program to help accompany those with health issues to medical appointments, shopping and transport I think?

Breathing exercises and meditation of some sort can be very effective with FND Seizures particularly those audio lead. You could get involved with this, there are plenty of free online guided meditations or you could print off some to read to your friend to calm her down. Slowing down her activities to a medium level is sensible and helpful to allow the confused brain to have time to process information better and reduce the risk of overloading signals. Actually that applies to everyone, today we are taught to push and rush and hurry ALL THE TIME when our bodies are not genetically designed for that at all! Remind her `Life is a Marathon, not a sprint!'

People can wait, projects can take longer than expected and that is okay and should be agreed with other people the adjustments she needs to have made, you do not hear of anyone with other Neuro conditions being denied `reasonable adjustments' so make that happen, reduce environmental stresses wherever possible.

Radical advice: if your friend is a dog lover able to support a dog and aged 18, she can probably apply to a charity for a Seizure Dog. These incredible animals can learn to sense when a seizure is about to happen for the individual they are paired with; and could mean life change for your friend. The dog would alert her to allow her to get into a safe place/position before the seizure hits, the dog can also bring her out of it by barking -if that is appropriate- or alert others, bring medications, fetch the phone etc. They are truly amazing and massive stress relievers because they give more independence and confidence back to the partner owner!

Yes they would be hard work and expense, but that outweighs the benefits sometimes?

There is always an application process for these charities and a long waiting period for these talented dogs so even if under 18 years, apply early if interested.

Best of luck with supporting your friend

Look for the calm in the Storm!

[ShallowWater in reply to Brokendeer]

Thank you for your support and advice on this!! You have been so very helpful and I’m grateful for what you’ve shared with me.

Currently she is being made to not have anyone try and bring her out of an episode as a way to try and control and prevent them from happening. I will have to look into the things you have mentioned and suggested to show her, and see if any of them could be helpful or beneficial at any given time. Her surgery for the beta blockers is scheduled soon so hopefully there will be some sort of difference in her day to day life afterwards.

If there is anything that you’ve said here that makes some sort of a difference for her, good or bad, I will be sure to let you know. Once again, thank you so incredibly much for your help!! This is the first time I’ve felt a real grasp on the situation in a long time.

[Brokendeer]

p,s almost forgot, sing out loud and strong when you are together, it beats crying and is great breathing exercise which activates the Vagus Nerve a key Neuro system controller; plus it's more fun!

Look for the calm in the Storm!