SarahA33

Hi..

I've had so much radioactive dye in me that I'm really surprised I don't glow in the dark. I never had a reaction from the times I've rec'd.

Good luck with your test!

Kris,

Thanks for the kind words. I've had a migraine that won't let up also. I've been down for the count.

I'm sorry to hear you've not been feeling well also... I wouldn't wish this on anyone but it is nice to feel not so alone. Hope things are better for you

cbakl,

that's so funny you mentioned that. Zomig was the only triptan that has worked for me. I can no longer take it because it raises my blood pressure also.

I receive migraine treatments sometimes. Some migraines last for 20+ days and I just give up and surrender. Have you had any of those?

Take care,

Sarah

Kris,

How are you feeling? I've been thinking of you but have had a really, really bad week. Hoping you are doing well.

Fingers crossed you get some answers with the glucose testing and the 5h.

Take care,

Sarah

Hiya, Chaos and Goawaypots,

Chaos yep I agree with you about the initial dose of Inderal for migraine.. but I take 720mg (240mg tid) and it does help with the migraines somewhat I think as well as the bp/hr..

This is for anyone interested looking at this medication for migraine use. This little synapse was taken from www.migraine.com which I find a lot of great migraine topics on. "Inderal LA Dosage for preventing a migraine attack: The starting dose of Inderal LA for preventing a migraine headache is usually a single 80 mg capsule taken once a day. Most people respond best to between 160 mg and 240 mg once a day when taking it to prevent migraines. If Inderal LA is not helping to prevent your headaches after four to six weeks, talk with your doctor about trying a different migraine medicine."

Anyway, I could see how an initial low dose for POTS patients would be a whopping amount. On ncbi's website I read a great deal about low dose propranolol when used as a migraine abortive as well as a preventative. I guess anything that could potentially help with a migraine is worth a shot. This is an old 2 pg case report but was the first time ive seen it used in abortive measures. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1021497/?page=1

Sorry to hear that you both suffer from these awful things too!

Be Well,

Sarah

Hi Joann!!!

Hpoe you are well!

I think a lot has to do with the fact that our bodies are constantly changing. Our autonomic nervous sytem fires off whenever it feels like it (has a mind of its own, i like to say) and that when we have a test that is made to produce autonomic responses it probably takes a great deal of time for some of us to return to our normal icky feeling state. Just my opnion though

I forgot to add that I have had botox twice. It wasn't beneficial for me completely but I did notice some improvement.

the reason I asked about the betablocker is because Inderal (propanalol) is a Beta Blocker that is also prescribed for migraines as well. I even believe off label it is given for anxiety.

Your welcome Okie!

I hope If you decide to see this doctor that you can get in fairly quickly.

^{In 2009, after several doctors telling me they couldn't find anything wrong with my son and telling me it was anxiety, school avoidance,etc, we took him to see Dr Gisela Chelimsky in Cleveland. The first words out of her mouth were, 'You've probably been told this is all in your head and there is nothing wrong with you. We are going to get this figured out.' She immediately gave me her game plan and told me what tests would be run and for what reasons. At the end of the appointment she gave me a big hug. She has been my favorite doctor through out this whole ordeal. While we no longer see her since we found a local doctor, she gave me back my faith in doctors.}

Christy,

Is Chlemsky at the Cleveland Clinic? I'm just wondering what specialty she is. You probably felt the weight of the world just drop off your shoulders when she hugged you and assured you that this would get figured out. It's doctor's like that, that we need in the medical community. She sounds like she really cared about your son and his health. (and cared about you, too!)

Arizona,

What an awesome topic idea! Kudos!

It's very easy to get caught up in referencing negative doctors appointments (mainly because for most of us the bad outweighs the good). But, There is always a silver lining (even if you cant see it at the time) and I've mentioned previously that POTS has taught me incredible lessons of being humble, patient and empathetic. Also, what an awesome new internist you've linked up with. She seems willing to not only learn from you, but to research and help others because of you.

Sorry... just saw that he left already. Im assuming he had an attending or was practicing under an MD.. maybe you could write that doctor a letter explaining your situation and how his resident that just left, sort of left you without many options.

Khaarina,

Has your current dr. (resident) left yet? Maybe he could write a letter to your new doctor about your medical history and testing, etc.. or even better, maybe he could recommend someone and give him a call. It must feel really scary right now for you to think of starting from scratch again. I'm sorry.

Where are you located? I can re-post a list of doctors by state that specialize in Autonomic Dysfunction if you interested.

Good luck to you and everything will work out

Did you ever see Finding Nemo... "Just keep swimming, just keep swimming.." That's my motto!

GN,

have you thought about giving your cardiologist/neuro/whomever completed the test a call this morning to explain your symptoms? I didn't have any muscular pain but then again I couldn't stand up without my heart rate shooting up. I had a squeezing/tightening in the chest probably due to the extreme tachycardia. Glad to hear the beta blockers have kicked back in but maybe you should think of giving them a call just for your own reassurance.

::hugs:: feel better and let us know how it turns out okay?

I have a neuro who specializes in autonomic issues who handles most of my POTS related care but I have to travel out of state to see him. I also travel cross- country to see an immunologist. Chaos would you mind sharing your diagnosis please?

The only local doc I have who really knows anything about POTS is my cardiologist and he didn't know much when I first started seeing him. He's learning more but I pretty much just keep him on board in case I need local care so I have someone in town who could be used as a resource in case I ever needed to be admitted to the hospital. He is also willing to write orders for things like IV saline when the infusion center won't take the order from the out of town MD. My other docs are happy to take my money so I can update them/educate them on everything I'm learning at the out of state facilities.

I have a cardiologist who diagnosed and treats my dysautonomia. It took only a couple of minutes describing my symptoms to her for her to immediately go " Oh that's dysautonomia, let's order a tilt table test".... done and done. She's the one who gives me the Midodrine for the NCS.

Ashley,

I'm SO glad that you were able to find a cardiologist who knew about pots and dysautonomia. Im hoping the midodrine is helping you? I am hyper but am tolerating midodrine well. The flushing from the pots but goosebumps from the midodrine isn't very fun.

My son was diagnosed by a cardiologist, but has always been treated by neurologists. His pediatrician has been very 'hands off'. He used to see a gastroenterologist who was up on dysautonomia as well. He now also see a hematologist for MCAS as well.

We have a PPO insurance plan.

Hi Christy!

Hope all is well. thx for adding gi

I see a electrophysiologist who diagnosed me with dysautonomia. I also occasionally see a cardiologist in the same practice. The EP seems to know all about the cardiac side of dysautonomia, while the cardiologist seems to only know what he learned threw osmosis. I have a hard time trusting anyone other then my EP with my cardiac care! -- Racer, I can completely identify with you. When you've been passed around between so many doctors with so little knowledge of POTS, you stick to doctors like white on rice when you find doctor's who are aware of it, and are able to diagnose you. Its understandable that you tend to not trust anyone else but them. I go through the same exact thing

Good Luck Racer, I hope you find the urologist that your looking for

Sarah

Im not a doctor but it sounds like blood pooling to me.

What kind of chest pain are you experiencing? I frequently get feelings like someone is "squeezing" my heart

GN,

they really need to come up with a better test, lol..

Your cardiologist is familiar with POTS it sounds like which is awesome. Do you mind sharing what medications he has you on now?

I've always wanted children. This was one of my biggest fears when being diagnosed with hyper pots.. But, My doctors have told me not to make pregnancy part of my 5 year plan...which Is their opinion and not their decision. We've been very clear about this.

Hang in there MK girl... Talk to your doctor about all of this like Katy suggested.

Hi Goawaypots,

would you mind sharing what beta bocker your on?

sorry to hear you have migraines, I suffer from them daily and they are unbelievable painful.

Good Luck,

Sarah

GN,

I'm sorry, I actually passed out during mine but it sounds like you were pretty close! did they diagnose you with pots?

If it makes you feel any better, I was down for the count after. My legs felt like gumby.. like you could bend them or something, they were so weak. I was taken from cardiovascular lab to the ER and when I finally left there with decent numbers 140's/100's and HR 120, they finally let me go.. I can totally sympathize with you

I have a neuro that specializes in dysautonomia and migraines, a cardiologist, an immunologist, and a geneticist. They all contribute to managing my symptoms as I have mcas and eds with my pots. My PCP also sees me every three months to update all of his notes on my meds status, etc so, hat he can fulfill insurance company inquiries and so he is up to date if I should ever actually have a normal illness like strep or the flu. Lol! That way he (or one of the other pcp in the practice) have my meds and allergies and diagnoses on file to make decisions about basic care.

Katy,

I'm so glad that you have a PCP who tries to keep updated on your case. Mine stunk.. it became too much to coordinate and I found my current POTS dr ended up handling everything so i decided to relinquish my care from my PCP.

No! Absolutely not.

Here is who I would reccomend that you do some research on:

Dr. Amer Suleman
The Heartbeat Clinic
7777 Forest Lane
Suite A 236
Dallas, Texas 75230
972-566-4327
POTS, NCS
Autonomic Laboratory
Dr. Suleman is an electrophysiologist with a special interest in dysautonomias.

Hi, Melanie, Good luck to you and thanks for responding

Sarah