My new autonomic cardiologist wants to hospitalize me for tests!!!

[Kati]

@Roxanne Martin if I may comment about POTS and tilt table testing, I know much about it because I have it and went through a TTT.

Basically,

1) listen to your body. If you get a headache while uppright, return to horizontal. Do not push yourself.
2) do not do anything special prior to your TTT. No extra hydration, no beta blockers. These would mask the results and you actually want the symptoms to show up on your TTT day for proper diagnosis. Follow the instructions.
3) hydration seems to be helpful for many of us. Gatorade type of drink, some will prefer NUNN rehydration tablets, Pedialyte will work too (but tastes horrible). You can also make your own but I don't have a recipe handy.
4) compression stockings may help you a bit.
5) in terms of medication, some of us are greatly helped by beta-blockers (I take atenolol, 12.5 mg twice a day) and midodrine. I hope that the cardiologist will be able to offer you some medication. Atenolol for me regulates my heart rate so it doesn't go up when I sit up or when I stand. A lot of my shortness of breath is taken care of.
6) listen to your symptoms and don't push it. If you have to do things aroundthe house, go slowly and take many horizontal breaks. It's because with POTS, your body works extra hard to accomodate to gravity.

i hope it helps. It is not uncommon in our patient population. It's already good you will be getting a TTT so you can have a proper diagnosis.

 

[taniaaust1]

Gingergrrl,
I find your case interesting.. You almost sound like me. I also have pressure in my head. (and other sensations that are quite horrible) Haven't found anyone with this problem! Interesting you had/have dysautomonia. Recently, my Lyme dr. found my heart rate speeds thirty or more beats from laying to standing.

I am going for the tilt table test in a few weeks. You may say later in this thread, but have you found relief of these symptoms? Anything you could advise me on? Thanks!

Seeing your heart speeds up by thirty or more beats per minutes from laying to standing.. ..you have POTS (postural orthostatic tachycardia syndrome). Things like feeling pressure in the head (mine sometimes can feel like its about to explode from standing) are common with this disorder. POTS is an autonomic dysfuction and things like viruses and other issues can cause it, it commonly appears secondary to other disorders.

You should see someone who understands POTS due to your doctors observation even if it doesn't show up on the tilt table on the day. (When you go for the tilt table, make sure you aren't over drinking to ward of the POTS. I myself do this as a management habit so when I need to be upright doing things eg to get to an appointment, I can drink a very high amount.. and one time cause I'd drunk heaps my POTS didn't show up on a test though I do have severe POTS).

 

[taniaaust1]

Roxanne, sorry I cannot be of help at the moment but wish you the best. Am too ill to figure out your questions or how to advise! I apologize.

sending you a **hug** I hope tomorrow is a bit better for you.

 

[foxy loxy]

sending you a **hug** I hope tomorrow is a bit better for you.

Gingergrrl,
so sorry you are so ill! I send you a hug and will pray you get better and find hope despite your suffering.

Thanks to those that responded!!! WOW it was SO helpful!!! Amazing how regular people can be more helpful than Drs!! Experience!!!

The weird part about my case is that I often get lightheaded from lying to standing... but have no "blood pooling" problems and often seems my symptoms (sickening head pressure) gets BETTER when I get up!!!! Not sure what that means?? Like reading a book semi horizontal with my neck bent seems to make it worse....Anybody have insight?

Kati, it was great to know what you have taken and found to be helpful!
taniaaust1 good advice about possibly treating anyway! Thanks...

 

[Kati]

Gingergrrl,
so sorry you are so ill! I send you a hug and will pray you get better and find hope despite your suffering.

Thanks to those that responded!!! WOW it was SO helpful!!! Amazing how regular people can be more helpful than Drs!! Experience!!!

The weird part about my case is that I often get lightheaded from lying to standing... but have no "blood pooling" problems and often seems my symptoms (sickening head pressure) gets BETTER when I get up!!!! Not sure what that means?? Like reading a book semi horizontal with my neck bent seems to make it worse....Anybody have insight?

Kati, it was great to know what you have taken and found to be helpful!
taniaaust1 good advice about possibly treating anyway! Thanks...

That is exactly why you are going for a tilt table test, to find out how your autonomic nervous system works. Some have POTS, some have Neurally Mediated Hypotension (NMH), and some even have both. The tilt table test will sort that out for you.

As extra precautions, take it easy when you get up from horizontal. Go slow. Sit for a moment before standing. And if you feel dizzy of faint, kindly return to the horizontal position... Your body will appreciate.

 

[foxy loxy]

So My tilt table was positive. I didn't faint, but wowsers did my heart ever pick up speed. The weird part is that after the initial tilt my heart went up from 80 to 120-130, and about fifteen twenty minutes later is suddenly went beserk and zoomed up to 170. Whew, that felt awful! made me emotional and yucky feeling.

They didn't prescribe me anything yet although beta blockers were mentioned. My question for you guys is... beyond salt and water and exercise... anyone find a natural supplement to be helpful... such as hawthorn berry or niacin?

The cardiologist thought maaaaybe POTS could be causing my continual on/off head pressure I live with.. sigh... I hope! Wouldn't THAT be lovely!!

 

[Kati]

So My tilt table was positive. I didn't faint, but wowsers did my heart ever pick up speed. The weird part is that after the initial tilt my heart went up from 80 to 120-130, and about fifteen twenty minutes later is suddenly went beserk and zoomed up to 170. Whew, that felt awful! made me emotional and yucky feeling.

They didn't prescribe me anything yet although beta blockers were mentioned. My question for you guys is... beyond salt and water and exercise... anyone find a natural supplement to be helpful... such as hawthorn berry or niacin?

The cardiologist thought maaaaybe POTS could be causing my continual on/off head pressure I live with.. sigh... I hope! Wouldn't THAT be lovely!!

Welcome to the club @Roxanne Martin.

Low-dose atenolol has helped me - I do 12.5 mg twice a day.

 

[goldberry]

Gingergrrl,
I find your case interesting.. You almost sound like me. I also have pressure in my head. (and other sensations that are quite horrible) Haven't found anyone with this problem! Interesting you had/have dysautomonia. Recently, my Lyme dr. found my heart rate speeds thirty or more beats from laying to standing.

I am going for the tilt table test in a few weeks. You may say later in this thread, but have you found relief of these symptoms? Anything you could advise me on? Thanks!

@Roxanne Martin I am another human with head pressure. Haha, I don't think I get to say that very often. Feel free to message me if you want to discuss symptoms, it might be helpful for us both to not feel so isolated in our head squeezy worlds : ]

 

[maryb]

@Roxanne Martin
I have terrible head pressure which is relieved by standing up, mine is much worse when lying down. I'm seeing a cranio sacral therapist in a couple of weeks and also having my jaw sorted out, got to wear a splint initially for 6 months, but if anything can help this terrible symptom I'll do it. Do you feel anything like this could be contributing to the head pressure?