Adding Pots To The Mix

[Kat]

I posted a couple of months ago because my doctor had mentioned the possibility of POTS. My neurologist and cardiologist have not decided to add this to my diagnosis of Orthostatic Tremor (myoclonus) and now after a EEG, seizures. The POTS makes the most sense to me because after being upright for only a few minutes, I get tremors, a heavy head, blurry vision, brain fog and I become just clumsy in general. I have been confused about what symptoms go with which condition but I am now thinking that POTS could be to blame for the worst ones. I am starting on a vitamin regime and just would like to figure out the best way to live with this. Right now, I get up and do a little something around the house and then lay back down. It is like that all day. Most of my time is spent in bed. Any advice about sleep, eating...anything would be appreciated. My other question would be, if a lot of people with POTS have other conditions also?

Thanks for your help.

Kat

[peregrine]

Kat - how's your heart rate after standing up? And your blood pressure? The symptoms you describe could also be consistent with orthostatic hypotension (and dysautonomia in general), but POTS specifically requires an elevated heart rate on standing.

You'll find that many - probably most - of us here have comorbid (coexisting) conditions - for example, I have joint hypermobility syndrome and fibromyalgia. Welcome and hope you find some good tips here! Take a look at the rest of the board for various conversations about sleep, eating, exercise, and more.

[Kat]

Yes, I do have high heart rate upon standing. I think the diagnosis was complicated because some of the symptoms can be caused by the other conditions also. I find it all overwhelming and confusing....

[bellgirl]

Are you on medications for tachycardia? It took me about a year with medication and supplements to feel less fatigued, but I still have to pace myself, and need a lot of rest, and still do better, when I sleep 7-8 hours. I also have sleep apnea and Mitral Valve prolapse. I don't think you can have POTS without other issues, because they still really don't know the cause of it to begin with...I was very deficient in vitamin D3 by blood work; taking mega doses per Dr. orders, made a world of difference in my energy levels. Now with the right balance of medication my heart rate and B/P are more normal, too, so all this helps tremendously. Then I did research on supplements, I added one at a time to decide what was good for me. I try to eat right, but for months I was still nauseated, and had malabsorption problems. Once I started on a Beta blocker, and clonazepam, my tachycardia, dizziness/vertigo, tremulousness, vision blurriness, etc. became more manageable. I drink lots of fluids and exercise regularly, but don't over do it, and have found a balance of activity after about a year. You need to find what works for you. The doctors can help you with this, but you know your body better than anyone else. It is trial and error; it takes patience, perseverance, endurance, and grace... Give it some time...there is hope!!

[Kat]

Thank you so much. It has been over 6 years now. There are some days when I am so overwhelmed I can hardly make sense of it and there are others where I think there has to be a way to dig out. I don't expect it to be perfect, but I don't want to lay in bed the rest of my life. I am also D3 and B1 and B12 deficient. I am starting mega doses of these. My doctor wants me to start on Keppra first and then add in the beta blocker. It does not help that I have a fear of medication....brought on by doctors throwing different meds at me when they had no idea what this craziness was. Can you tell what medication has helped you the most?

I will keep re-reading your post. It does give me hope.

Kat

[bellgirl]

Just hang in there; it will take some time; but meds and supplements can really help. Glad you are on D3 and B complex. Listen to your doctor. Sounds like he knows what he is doing The Keppra will calm your nervous system, and stop the tremors and seizures, which is so important! Beta blockers help with tachycardia....you will feel so much better. I'm on Clonazepam for sleep; that is an anti seizure med also; it helps me sleep. Bystolic is my beta blocker; it is long acting and works well for me, but I'm on B/P medication, too, Losartan. Every one is different. It sounds like they are starting with your most important issue first...that's good!!

[Kat]

Thanks Kim. I was reading my post and realized I wrote that my doctors had decided NOT to add POTS to my diagnosis instead of they have NOW decided to add POTS to my diagnosis. I will blame that on brain fog. I will keep keeping on and hopefully see some type of improvement. I don't think I remember what normal even feels like. I see someone standing for a few minutes just shooting the breeze and I find it amazing. I just want to be able to go to some of my kids events.

Kat

[bellgirl]

It's Ok...we are all a little forgetful, but you realize, that the important things will get done, and the rest doesn't matter...just love those kids, even if you can't always attend their events. They will know you are trying, and hopefully, you will get more energy. The D3 and CoQ10 helped my energy level; it took awhile to get used to the beta blocker. I was very fatigued initially, but it was better about a month in, with the right one! If you are too fatigued with your heart rate or B/P too low, than try another with drs. orders, like I did. Longer acting is better, and cardioselective, if you have breathing issues, too. Bring your own chair, so that you can sit and watch your kids, and drink plenty of fluids!!