I Saw Dr. Tullo For The First Time Today

[thegron]

Hey so I went to see Dr. Tullo (in new jersey) today for the first time. He was a pretty nice guy but mostly did the talking. My dysautonomia is relatively mild compared to the people that he usually sees so I don't think he's even convinced that I am sick...

Anyhow, for the time being he is putting me on Dr. Levine's exercise protocol. I feel pretty confident that it will help with my orthostatic symptoms but has anyone's brain fog actually improved on it (or just exercise in general I guess) ?

I will see him again in 3 months and, if the exercise doesn't help, I will be more assertive and make sure he reads my symptom list.

Just in case anyone is curious, I'll paste my symptoms below.

I will put an asterisk next to symptoms that only appear when my condition is very bad (usually from excessive carb intake).

The intensity and number of symptoms is variable and really depends on my diet. My symptoms can include the following:

-Always present cognitive dysfunction (memory loss, slow processing speed)

-This is my worst and most constant symptom (has never gotten better)

-Orthostatic hypotension that usually lasts about 30 seconds (complete with auditory disturbances, weakness, tachycardia, light-headedness, and paresthesia)

-Sometimes I'll have dozens of episodes in a day (everytime I get up)

-Similar orthostatic symptoms lying down and sitting as well (when lying, raising my head helps)

-Sometimes after eating I can feel pressure in my head (it is hard to describe otherwise)

-Heart palpitations (hard to tell whether or not they are related to this condition)

-Generalized poor blood flow to my extremities (when standing, sitting, lying down, etc.)

-I’ll get lightheaded and bradycardic when engaged in an adrenaline rush

-I get fatigued and sleepy a lot earlier than usual

-Cravings for sweet foods (could be unrelated)

-A pulsatile sensation toward the top of my head (almost like the feeling of your pulse after a BP cuff is deflated)

*-Gastrointestinal upset

*-Severe malaise

*-I can get bad headaches that will last for days to weeks (no photophobia or phonophobia)

*-EXTREME light-headedness (accompanied by severe cognitive dysfunction) for days or weeks following a bad episode

-This light-headedness is far worse than the kind I experience briefly during an episode of orthostasis

-It is constant regardless of my physical positioning

*-Sharp pains toward the top of my skull (around the crest) when I bend over and I’ll get orthostasis

*-I can get severely depressed and/or anxious for seemingly no external reason at all

Edited August 30, 2013 by corina

[Guest Hanice]

I'm sorry you had a negative experience. I hope the exercise works for you. Maybe you can push for a second appointment sooner and get all your questions answered. Im sure they won't mind getting more money from you.

Edited August 30, 2013 by corina

[SarahA33]

Hey there,

I feel really upset for you. I know how you were looking forward to this appointment for specifically the brain fog among other things.

It infuriates me that you felt dismissed. Regarding Dr. Levine's exercise protocol.. I certainly wish you the absolute best of luck. I found that I had to find my own protocol/plan that worked for me and structure it to what I could do. I was not a fan of the rowing machine, that made me pass out.

Are you going back to him in three months? 3 months is a long time to continue to feel like crap. Did he suggest any medications or order any labs/tests for you to complete by the 3 month mark? is it possible for you to consult in NYC... I know of a few pot's doc's there I think. If I remember correctly your in jersey, right?

And you were supportive when I first joined about my migraines and offering me some advice on getting tested for mast cell, etc.

[kayjay]

I do not have a "grinch" sized heart. Levine's protocol is not for everyone. My doctor, who diagnosed me, told me that it would not be helpful for me.

If your pots was caused by deconditioning, exercise could cure you. If you're like me and became deconditioned BECAUSE of your illness, I would find a new doctor.

It made me really sad to read "I don't think he's even convinced that I am sick". For that reason alone I would keep shopping for a doctor until you find one that will help.

Best wishes to you. If you are near Philadelphia pm me.

Oh- I just saw Sarah knows doctors in NYC. Good plan!

[thegron]

Hey thanks for your support guys. Yeah it was pretty frustrating. Even my family and friends (with the exception of my brother) don't believe I'm sick. I hate these invisible diseases... At least i'm learning to be more self-reliant.

Hanice, thanks for your support. I think I'm going to see a different doc.

Sarah, I don't even remember commenting on one of your posts (thanks to my good ol' brain fog) but I am glad I did

Thank you for sharing your opinion on the exercise protocols. Since my issues are more mild, I wonder if I even need to follow Levine's protocol. I could just do my own thing and start slowly and build up my strength.

I think I'm going to cancel that appointment with Dr. Tullo and just try to see someone in NYC. Who do you see Sarah? Have you heard of Dr. Kauffman (spelling might be off)? I might make an appointment with him.

Kayjay, I definitely did not get this illness because of deconditioning but I think exercise will help me somewhat. I doubt it will be a cureall for me however. I did have an appointment to get an echocardiogram but I think I'm going to cancel it.

[HopeSprings]

Had similar experience with Dr. Tullo and have heard the same from other patients. I see Dr. Weimer at Columbia and like him.

[thegron]

Hey thanks Naomi. I'll look into Dr. Weimer.

[SarahA33]

I was going to recommend. dr. weimer as well as dr. hilz.

I see my local doctors for my pots but have friends who have had really positive experiences with them.

hang in there