Saw Barboi - What other doctors are good?

[sean82]

Hello everyone,

 

Hope this post finds you better than before. I myself am still very fatigued and experiencing the fun orthostatic/lightheaded/dizziness issues. 

I did see Alexandru Barboi here in Glenview, IL. He is a knowledgeable guy and did confirm my POTS. However, it seems his only answers were to slow the heart rate using beta blockers and then use a stimulant like midrodrine to help with lightheaded feelings. I tried the beta blocker and felt worse so I switched to corlanor (calcium channel blocker I believe) and that has slowed my heart down but Im still exhausted, weak and lightheaded. I have not yet tried a stimulant.

How has midrodrine worked for everyone and has it helped the orthostatic intolerance - the lightheaded weak feeling? Also, what doctors do you all recommend seeing for POTS/CFS. I would appreciate any good recommendations and also insight on the stimulant class and how it works for this illness.

 

Keep fighting & we are all in this together,

 

Sean

[statesof]

Hey Sean, I've also see Dr. Barboi but he did not have any specific recommendations for me at the time. I've also seen Dr. Janice Gilden who works over at the Saint Mary and Elizabeth hospital, she is not a neurologist but she deals with many POTS patients and is pretty thorough in testing. And I believe his name is Dr. Chelimsky in Milwalkie, I was not able to get my case accepted but I believe some other members have seen him. Then out of area there is also Mayo clinic or the Vanderbilt clinic depending on your insurance and costs.

[Katybug]

Midodrine is used specifically to raise low blood pressure. Do you have low bp?

[Kaitlyn]

Hi Sean -

Sorry you are dealing with the troubling symptoms. It seems to be such an ongoing battle for most of us. I see Dr Rose Dotson in Grafton (and her APNP Mary Yellick). They are very good and have recommended lots of supplements in addition to meds. I think it is a frustrating illness for them as well. No cure, treating symptoms, we are all different and sensitive to meds, chasing a ghost all the time.

Midodrine raises BP as Katie indicated. The stimulants used to treat POTS and CFS would be Adderall, Provigil, Nuvigil, Ritilan etc

They recently tried to get Ritilan approved by my insurance but they denied it because it is an off label use. Now working on Adderall. Provigil and Nuvigil are hard to get approved if you don't have narcolepsy from what I understand. These meds help with the fatigue and brain fog/cognitive impairment.

i wish you all the best! Hang in there

kaitlyn

[yogini]

It is very hard to find a knowledgeable POTS doctor.  If you found a doctor that's good, it may make sense to stick with that person and work with them until you've found the right treatment combination. There is no medication that works for all people with POTS.  We all have different causes and co-conditions, and so treatment is very individual.  It is a big process of trial and error that can take several months or longer.   

Beta blockers and other medications that affect your HR cause fatigue but some of these side effects wear off over time.  MIdodrine could increase your BP to counter the effects of the beta blocker.  Calcium channel blockers aren't commonly used in POTS. 

There is lots of good information on Dinet about medications and treatments. I encourage you to read about these medications and read the forum.  With knowledge, you can help your doctor come up with the best treatment for you.

[Kris4444]

Hi Sean,

I see Dr. Barboi as well. I too take a beta blocker, Nadolol. It has helped me tremendously. It has lowered my heart rate and brought my blood pressure down making it possible for me to keep riding. Although I still struggle, it means everything to keep going. I also infuse lactated ringers once a week at home with a home nurse.

I went to Mayo in 2013 and passed all of the ANS testing with the exception of very high norepinephrine and dopamine. I started seeing Dr. Barboi in 2015 and he retested me and I had a positive tilt table and still had very high levels of NE and dopamine.

I  hope you get help with your symptoms.