SarahA33

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.

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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

Corina.. I think there is a huge connection between brain fog/mental cloudiness with lower pressures. I have had the same thing happen when my pressures "bottom out" and I feel super dizzy and spaced out. This seems to be very difficult for all of us. Im 27 and it's scary to think about what another 10 years of this will leave me.

hey there, I had the exact same experience with the ativan I take. i do not have sedation who so ever with it, yet it drops my heart rate down 10-20 points. Take a look at this excerpt I found: "Lorazepam works by acting on receptors in the brain called GABA receptors. This causes the release of a neurotransmitter called GABA in the brain. Neurotransmitters are chemicals that are stored in nerve cells in the brain and nervous system. They are involved in transmitting messages between the nerve cells. GABA is a neurotransmitter that acts as a natural 'nerve-calming' agent. It helps keep the nerve activity in the brain in balance, and is involved in inducing sleepiness and reducing anxiety. As lorazepam increases the activity of GABA in the brain, it increases its calming effect and results in sleepiness, a decrease in anxiety and relaxation of the muscles" http://www.netdoctor.co.uk/depression/medicines/ativan.html#ixzz2e8q9r1rP My doctor whole heardtedly beleives it calms down the central nervous systema nd I agree with him. My quiality of life is much better. . The beta blocker (Inderal) also helps with the heart rate so I'm in the same boat. It aids in controlling my HR along with the midodrine. (Good news about midodrine is that it can help improve cognitive function so Im keeping my fingers crossed!) Clonodine works well when taking the midodrine and clonodine right after so that I dont get any spikes. Thats another med that can also cause brain fog. Ugh.. its so frustrating.

thak you alex

I wonder if there is a compiled list of meds that cause braion fog.. Im sure im on half of them (Beta Blocker, Clonodine, Ativan) . I know the increase in midodrine has helped a bit so im keeping my fiongers crossed. I'lll start looking for that list but if anyone else has any suggestions about other meds linked to this please please share. Thank You! and thank you again Alex! Sarah

Hi Alex, Thanks for posting that. I'm guessing you suffer from brain fog as well? The mental cloudiness that I've had for years, but esp. has gotten worse with time.. I used to blame the memory lapses and cognitive confusion on my migraines but as my migraines are decreasing the brain fog still seems to be there. Forgetting where I live, parked at green lights, entire conversations, etc. It is nice to know that others describe this topic as one of their main concerns also. Thank You again, Alex Sarah

Hang in there , Kris. Trust your gut and keep pushing for answers. Hopefully you've got at least one dr on your team who you trust a great deal. Talk with him about how you are feeling

Next time you see your endo, maybe you could talk to him about consulting with an oncologist. Someone for 2nd opinion consult?

Kris, forgive my brain fog or I've respeated myself earlier in the post. Its not such a good day for me.. anyway..did you mention scans like PET, octreotide, or mibg at all? or you may have already had those done,

This is may be off topic so i apologize if it kris, but what were everyone's dopamine levels? Mine were non existent. I know its relly measure to get an accurate diagnosis since dopamine starts in the gut.... but i was just wondering if anyone had low/high levels

Kris, Sorry your so frustrated and youve got every right to be. Hang in there

dkd, what is your heart rate? I have the same symptoms, shortness of breath, tightness, and even sometimes chest pain that feels like it's being squeezed. This was all found to be because my heart rate is so high it results in the inability to sometimes speak, walk, etc. I'm sorry you have to go through all of this. I really know how frustrating it can be. Like Kim asked...what kind of testing did they do for you? thanks for sharing and sorry you are going through a bit of a rough patch right now

Spinner, summer's stink.. My doctor suggested moving to a place like Alaska! he was half kidding! I'm in buffalo, so it's like Alaska weather half the year, lol. okay, so I get the same treatment when you have a HR of 50, I go in with a HR of 200 in triage at the ER, tachy. . He had no idea about hyper POTS but truthfully, many doctors don't. it's so unfortunate, have you come across that in your journey too?

Okie... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/table/T1/ please take a look at this.. it's the diagnostic criteria for diagnosing POTS. During your clinics I think you were very smart to test your orthostatic responses w/ hr's.. do you happen to know what you normally run with your pressures supine and standing also? a 40 point jump is significant. Also.. id think Vandy requires ins. to be seen -- but have you thought about applying for any of their research studies? I'm not sure how much of an expense that would be for you out of pocket. We are all a bunch of tough cookies. I wish I never got sick, but truly I would be a different person if I hadn't. Things that used to bother me no longer do because I have a different perspective.

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

Sorry if im hijacking ..that guy looks like a little ninja Ashley you mentioned a thyroid issue... did you develop that before or after your pots symptoms? Just wondering as my thyroid panels have been checked for years upon years trying to rule out endocrine issues before I was diagnosed w/ Pots, but recently my last two tsh levels have come back as hypo... this completely confuses me. No meds were talked about because it's just slightly lower than normal

Yikes! Your poor cousin... hope he's recovered somewhat. My tilt was horrific and I was down for the count for a while after... Anyway, It seems like you've got a lot to deal with personally with your own health issues, it's very kind of you to be there for your cousin. Im not a doctor but this doesn't sound like hyper pots to me... what did the cardiologist say??

Lol...

Kris, I'm really sorry that you have to go through this. Did your dr. explain what your next step is if the tests come back negative? have you had an autonomic work up? tilt?

Hi Bill, I drink Gatorade on a regular basis but on days when I require more hydration I drink pedialyte. grape! stay cool! Sarah

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.

Okiedokie, Are you diagnosed with hyper pots? I was wondering what your numbers (BP and HR) typically run if you are thinking of adding clonidine to your regimen? Are you currently in nursing school? What a great nurse that you'll end up being. You will have empathy for your patients and what they are going through and you'll advocate for them! I guess I think its important that I find all the lessons I can..i assume by what you've said that you think along the same lines.