SarahA33

I go to the Autonomic Disorders/Mitral Valve Prolapse Center of Alabama in Birmingham. They specialize in Dysautonomia with the head of the group being a Cardiologist, but I was sent to them through an ENT, who did a thesis on Autonomic Vertigo; I found him after 13 long years of declining symptoms, and going to all the right doctors for a diagnosis. I have a Sleep Specialist for my sleep apnea. I have a Neurologist, who did an MRI, MRA, to rule out aneurysm, and tests for Lyme, Syphilis, and MS, all of which were negative, who feels I must have something neurologically wrong with me to have this, so he continues to see me twice a year, too. I also have a Rheumatologist and Nurse Practitioner for my Fibromyalgia and I'm equivocal for Scleraderma, but not positive yet. My Primary Care Physician knows about dysautonomia, and I found out about my vitamin D deficiency through her. She also did a test for Myasthenia Gravis, which I don't have, both of which I asked to have done. My GYN has been very supportive, too, even though she couldn't help me, other than to tell me that my 3 fibroids didn't need to be removed, which I think was caused by all the estrogen I took over the years for birth control. That's my story in a nutshell

Bell,

Thanks so much for opening up. It sounds like you've been through so much. ::hugs::

Thank you for adding the sleep specialist because a great deal of POTsies (cant remember exact statistics) have sleep apea or some form of sleep disturbance. Thank you!

Hi there, everybody!

Reading through your posts and a ton of articles I'm left wondering what kind of dr. really should be handling our POTS? It's confusing..

a) neurologist

b. nephrologists (htn specialists)

c) Primary care doc,

d)Electrophysiologist,

e)Cardiologist

F) other

I'd really love to hear everyone's answers and feedback. Thank you for all of your support since I joined, Wish I would have found this much sooner!

Sarah

Spinner,

I have not gone glutten free because I personally think I lack the discipline. I've heard from a few friends on this site that going gluten-free has helped them immensely; Seems expensive but really worth it.

I understand the frustration with the meds.. trial and error and then trying them all over again in different combinations is exhausting and not fun at all. However, that's where my progress has resulted from. Medication combination's and timing, along with other meds ive tried in the past w/ no result but when added to a current med regimen it's actually worked.

This is all so hard.

Okie, check your PM

Thanks SO much for the idea of looking into the disability program at the LPN school. I'd love to go back and do it but I work during the day and it would require night classes that would result in a total burnout for me.

I really do wish you much success!!

How far are you from Dallas?

One month will fly by and your appt will be here before you know It!

Yes, I've carried around enough, too and understand. Have fun at your party!

Okiedokie,

I found an article on livestrong referenced from Dr. Wilson of the Mayo Clinic. Some drugs that are RX'd for mood disorders can contribute to brain fog. I wish I could have found more info for you...

here's the link,

http://www.livestrong.com/article/190152-what-are-the-causes-of-brain-fog/

Hi all,

I found this on wisegeek.com (not the most reputable source of course, but I really liked the way they described the symptoms and how little the medical community know/can do for it.)

"Cognitive dysfunction is a mental condition commonly described as "brain fog." Temporary confusion and problems with concentration or memory are common symptoms. A wide variety of causes can contribute to cognitive dysfunction. Cognitive issues are not completely understood, and are being studied closely by physicians and scientists. Chronic fatigue syndrome (CFS), multiple sclerosis (MS), and fibromyalgia are some of the common conditions that are associated with this mental problem. "

"There is no single cause of cognitive dysfunction. Chronic fatigue syndrome is one condition that has been linked to this mental condition. The lack of sleep that is associated with CFS may trigger or exacerbate cognitive problems. Multiple sclerosis has also be connected to brain fog disorders. MS is known to affect the way that the brain communicates with other parts of the body. Research indicates that a significant percentage of MS patients also encounter problems with cognitive dyfunction.

Other health problems such as fibromyalgia can also lead to cognitive problems in some patients. Muscle pain and bodily discomfort are the most common symptoms of fibromyalgia, which may contribute to sleep problems. Experts are not certain if cognitive problems are directly linked to illnesses such as fibromyalgia, or if changes in sleep patterns are the true cause. The primary method of dealing with this dysfunction is to treat the contributing conditions. For instance, pain relievers may be prescribed for a fibromyalgia patient who also suffers from brain fog. The pain medication itself may not directly improve cognitive issues, but related improvements to the amount of stress or sleep may indirectly help. As the common term "brain fog" suggests, a general feeling of unclear thinking is the most frequent symptom. Patients may feel confused or lost. This dysfunction can also affect memory, and patients often have trouble recalling details of recent events. Long-term memory is not usually impacted by this condition.

Diminished concentration is another common symptom of cognitive dysfunction. In many instances, a person may begin a task and become quickly distracted. A pattern of forgotten tasks can develop, as each new distraction increases the patient's level of inattention. Language ability can be affected, and a person with this dysfunction may lack the ability to recall familiar names or words." - Wise Geek

potluck,

hello there,
all of my labs were completed around 4 times before the scanning had begun. I wasn't suggesting Kris put herself though that without blood work/urine's before searching for a neuroendrocine abonormality. I was simply suggesting the testing I underwent for neuroendocrine tumors and that it may be beneficial to seek out an oncologist who specializes in neuroendocrine testing as a consultation only. I had a great Endo but he retired and my case was given to my his replacement. But I really feel strongly that Pheo's, Carcinoid's, etc. should be completed that a cancer hospital. But, that's just my opinion.

It sounds like you've been through a lot also. I'll keep my fingers crossed for you, also and wish you the best.

gotca.. sorry Andy!!

Thanks Alex,

you seem to be to the Science Wiz... would you mind sharing the easiest approach I may be able to take with asking for the mestinon? Or do you think im on the right track?

MKgirl,

I know how scary this can be. Especially in the beginning stages when your not diagnosed and wondering whats going on with your body. The good news if this is pots, there are medications out there that can help you, along with life style changes. Don't lose hope and try your best not to panic (Easier said than done). Im sorry that you are so upset but you are taking the first step in trying to find out what is going on.. that takes a lot of courage.

Morning,

This is a link that is the clinical diagnostic criteria for POTS..

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/table/T1/

Here is a really good website that explains a lot. Please try to read the Psychological Findings in POTS section

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

sorry to hijack real quick, Andy...

Andy...I should also let you know I do NOT follow Dr. Levin's exercise plan, however, I do follow my own. The target heart rates aren't as important to me as it is getting up and using my recumbent bike and starting to take small walks.

MKgirl.. have you had a tilt test or any autonomic workups as of yet?

Alex and others make a really good point about being diagnosed with dysautonomia or anxiety. For years my migraines and GI symptoms were diagnosed with stress and anxiety, my spikes in BP and Tachycardia came last. My POTS symptoms started too when I was around 20. In college and working. Then one day I got hit with a migraine they thought was a stroke and things have changed every since. I'm doing better now with the combo of medications but it is a lot of work and trial and error.

You know your body better than anyone else.. so I would get some second, third, fourth opinions (Like most of us have had).. anyway, like Katy suggested, I think your best bet would be to find a dr. who specialized in autonomic dysfunction. Here is a list of such doctors by state:

http://www.ndrf.org/physicia.htm#sectN

hope this helps. good luck with everything and hang in there!

Hi Mkgirl,

please feel free to share your story so that we may be able to offer you some suggestions and ideas to discuss with your doctor. Your amongst friends

Sarah

lets keep our fingers crossed on the urine results..not sure which way to lead either.

im sorry

--

HI, Andy,

Hey guys,

What meds are you on specifically for POTS? (Keep in mind, im hyper pots) but, I'm on Midodrine, Florinef, Propanolol, Clonidine, H1 + H2 blockers, and Ativan

- Are there anyone who has been treated with medicine and can work full time and live a normal(more or less) life? different medication combination combo's. I believe my exercise regimen has helped a great deal and the increase in sodium..

I am doing the urine test on Sunday but in the past it has been negative.

I can't demand testing. I can only do what the doctor ordered.

Mayo said I would go back to them if a tumor is found. At this point it seems highly unlikely.

Kris,

I understand you cant demand testing, however, you can state your reasoning and opinions to your doctor for wanting to have the testing done. I think you have a valid case for at least a chest, abdomen and pelvic ct to begin with.

Whatever choice you make, I truly hope you find some help and answers. I wish you the best of luck. You've been through so much, Im sure your ready to get off this ride

I hope this works out for you

Hey there, sorry you aren't feeling well today.

I totally spent the Sunday at the beach, feet in sand and all. Needless to say despite my 30 proof sunscreen I burnt like a marshmellow on a smore. Also, while waiting on the dock I became so symptomatic because of the hot/humid weather I almost dropped.. I decided this wasn't for me.

Chaos,

I totally can relate to doing too much on "good days" because I end up paying for them for a few hours to days later. My type A butt cant seem to learn my lesson. There's just always so much to do and the hours in the day I feel are cut in half for me between work and rest. I try to have some fun on good days, but required mounds of pediate after my boating and dock adventure.

...

thanks alex,

im on like 5 of those. how annoying. I need them to function through my life and to actually have a quality of life. ... This is a tough decision. I guess I've gotta weigh my options. I just think I;m going to have to lean more to staying on my current meds because they've basically given me small bits and pieces of how I used to feel.

Suggestions anyone?!

thanks again alex, your great!

Hi Again, I just fpound this page that lists not only medications but some other irrtants that can cause mental confusion/brain fog

Hope everyone is doing okay today!!

http://www.drlwilson.com/Articles/brain_fog.htm