SarahA33

I'm not on any meds anymore that can cause cognitive impairment, but I can see a direct link with low bp. This morning I caught an 82/44 while not being able to think anymore. Other than that I have lost a lot of knowledge. Didn't even notice myself (which is way easier!) but my husband told me. I got tested several times and over the years this got worse. I find it very very hard to deal with this. Our youngest son is in med school now, he already has some extra knowledge on how to detect possible dysautonomia in people

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.

SarahA33,

I was on ativan and a beta blocker. I recently got off of the ativan, (2 weeks ago) but have not noticed a difference in the brain fog. Infact I oddly felt better while on the Ativan, almost like it would make thinking better for me. I never understood this. I got off of it because I got tired of asking for it. My neurologist thinks it causes you to become a zombie. When I told her I didn't feel any effects from it except it could make a bad day better....she told me that is because it is considered a Happy pill. I disagree with her, I believe it does something with the CNS and helps with dysautonomia.

I am hoping to get off of the beta and I guess that will be the ultimate test for me. Just know if I get off of it my heart rate won't be controlled because my resting heart rate is between 95-100.

How did the Clonidine help you? I think that is the only medication I have not tried

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:

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.

LMG,

I am not sure exactly why the Benadryl works for my migraines.. (im just glad it does).

Also, I am unsure of what it would do for your BP and HR and maybe you could check w/ your dr. first to see what he/she would suggest. I take Zyrtek and Zantek together because they are histamine blockers (H1 & H2) and help with my flushing caused by the pots

sorry i couldnt be more helpful

sarah

Hey Sarah, may I ask how Clonidine is working for you? I really think I have ADHD and hey, what do you know, Clonidine works for it too! lol

I LOVE your POTS goal checklist. I think those are awesome goals. I have had to be careful of long term goal setting with my Type A personality, because when I wasnt able to reach them I was incredibly hard on myself. I still am. Short term goal setting has been really helpful for me, though.

Clonodine is really helpful in reducing my BP and it has an effect on lowering my hr as well. I had no idea it is used in ADHD too, but am not suprised. It's got a lot of great benefits... However, in the beginning I did have a lot of really negative side effects and hated it. I still have a little bit of dry mouth but that's so tolorable and not even worth complaining about. Are you on the pill form? I know the patch can be a really good option for some people too.

Wow sarah I didn't realize hyper pots could be so horrible! A resting heart rate of 130s? That sounds insanely exhausting.I complain a lot because of the low blood pressure and high heart rate, but compared to you, my heart rate looks pretty good!

The midodrine at least might help keep your heart rate lower than it was before. I have noticed it keeping mine fairly in control, except for occasional episodes.

Have you tried other bp medications besides chlonidine? I know my mom is on metoporol? it seems to work decently well for her. I know not all bp meds work the same. When they tried to switch her to a different kind called Verapamil, her bp skyrocketed and she had to switch back to the other stuff. She's actually on two bp medications i think: metoporol ( which regulates heart rate more than anything) and Lisinopril. Sometimes it takes two

I hope you get some relief soon though, you're exhausting me just by thinking about it!

Hey Ashley,

Thanks for the kind words and thoughts. The truth is that I really should be exhausted, but I'm not.. not physically, anyway. Mentally sometimes I wish I could just "shut down" because I'm always thinking about something. Im like the Energizer bunny

I've been on Verapamil (Calan) which is the totally wrong kind of BP med for me, and also Topril in the past.. they didn't work well for me. I tried them for about a few months but didnt experience a reduction in pressures like I have with Clonodine, and Propanalol. You are corrrect, the midodrine has lessened my BPMs along with the beta blocker, clonodine, and ativan.

I also experience lower pressures sometimes so I can relate in a sense and I give you a lot of credit. It's incredibily challenging to have a low bp because of how symptomatic you can get. Howe are your numbers running lately? Hope you are doing well. Thanks for the medication suggestions.. I appreciate you taking the time to list them out for me.

Sarah

Khaarina, I'm a patient advocate and sometimes co-run a migraine support group here in Buffalo, NY and am not an expert on migraines/headaches. These meetings have been full of info as the director attends all the national conferences in like Hawaii (insert: envy lol) She brings back so much literature and We use the magazine Headwise through the Nat'l Headache Foundation, as distribution material (which is great about talking about up to date meds and new trmts, etc) and have a lot of drug reps come in to talk about triptans, etc. (Khaararina, in your case, I would be really hesitant about using triptans because 1) you've had this migraine/headache already for quite some time so I don't think a triptan like imitrix or maxalt would be beneficial at this point, but you never know unless you discuss it with your dr. first I guess. 2) I cant take triptans because of my pots. The cardiovascular effects it has on my system are horrible and they screw around w/ my BP and HR a great deal. How are you feeling today? I hope that your reply back to all of us will be that you've been able to break it. Fingers crossed for you

Christy How have your experiences with tramadol been? I'm super curious about the relief of tramadol vs an opiod I was initially given Tramadol before a narcotic ( cause back then it wasnt a narcotic even though it is now), anyway.. I acted so loopy and weird and my pupils got HUGE! My fiancé compares my behavior while taking tramadol to that I looked as though id been drinking. And I don't drink.

Hope everyone is well and headache free today!