Jump to content

Newly Diagnosed With Pots


Kimba
 Share

Recommended Posts

Just diagnosed with POTS after my local Neurologist was blaming my 24/7 brain fog on my MS.

I am now on Lopressor, wearing support hose (knee high), and increasing salt, potassium and fluids. I have also worked out an at home strength and cardio program with the help of a local rehab center. I am very committed to doing all I can to get better, but have only just started so have seen no big results yet...except that the nausea is a bit better the past few days.

My symptoms are: Brain fog 24/7 for the past almost 4 months, nausea that started after a course of steroid treatments for the incorrectly diagnosed MS flare up, and headaches.

I was diagnosed at the Cleveland Clinic. They have also started me on Topomax as they feel my headaches are undiagnosed migraines (have had them for years). They also found a hiatal hernia through this diagnosis process, so maybe that is contributing to the nausea (?) Either way I am currently taking Nexium for that, and the decreased nausea seems to have coincided with that.

Bottom line, all three symptoms or only the fogginess may be due to POTS. However, my tests have shown that it is venous pooling that is causing the domino effect in my body, and that my blood volume and heart function are fine.

I have never fainted or really even felt light headed...it is always more just this 24/7 foggy feeling or the feeling you get when having trouble perceiving the world while experiencing a migraine headache.

I was diagnosed with MS in April 1999, and this would have been my first real flare up...so I have been really lucky and pretty symptom free to date with that (knock on wood!).

The posts on this discussion group are helpful but I am looking for some success stories from those that have had similar symptoms to mine. And any helpful tips for getting back on track and leading a more normal life.

Anyone ever use oxygen in the evenings at home to "feed their brain" and get some temporary relief from brain fog? If so, do any effects last into the next day?

I am overweight and not fit, but able to get around and function on most days even after this four months of illness and inactivity. Anyone seen great improvements through disciplined lifestyle, diet and fitness changes?

Any input on what I might expect as far as recovery time if I am fully committed to all the recommendations of my Dr.'s, who are very knowledgeable about POTS? By this I mean how long before I can hope to see some improvement in the symptoms I mentioned and start to feel more normal again? One Dr. in Cleveland told me to not look for any big changes for at least a month. Sound about right to anyone that has had similar experiences to mine?

Thanks -

Link to comment
Share on other sites

Hi Kimba,

I don't have MS, but I do have idiopathic POTS. Nausea is one of my worst symptoms too so I'm right there with you. For me, Midodrine, fluids and salt have made a big difference in my quality of life...I haven't tried O2, but have heard from others that it does help some people with the brainfog.

I'm sorry you have to be here, but I'm glad you found us! I hope you find many friends and answers here :(

Hugs,

Lauren

Link to comment
Share on other sites

Hi,

I welcome to the forum :(. Right now I am on Midodrine and Metoprolol for my POTS. They have helped somewhat but I still have days where I just aweful. I have never had O2, but there are some other members on the board who have. As for the Brain Fog I haven't found much that has helped mine...

Jacquie

Link to comment
Share on other sites

Guest sonotech

Well, this is a tough question since the majority of us on this site are not exactly "in your shoes" (meaning no MS). So, I can't tell you what to expect really. There are a large majority of people on this site that don't see any improvement despite all the doctors recommendations.

I, myself, have had POTS for at least 10 years. It has been a slow progression of worsening symptoms and I have tried all the meds out there. So, can't really answer your question as to whether you should see improvement in one month.

I don't know if your POTS is related to your MS, did your doc say?

Sorry I couldn't be more helpful, but maybe someone else here can help more.

Link to comment
Share on other sites

  • 3 weeks later...

My POTS Brain Fog went away after the first 4 months. I had to take a very hard certification exam and it seems like the total concentration for 3 straight days snapped me out of it. Since then I try to do something every day that stimulates my mind like reading, puzzles or even playing games. Not sure if this is the reason or not but I hope it helps.

Just wondering??? Did you see Dr. Fouad at the Clinic. My problems are from venous pooling also. My heart function and blood volume are normal too. Dr. Fouad conducted blood volume tests on me. Dr. Chelimsky at University Hospital is a neurologist that specializes in Autonomic disorders esp. POTS. I am wondering if this may help since he is a neurologist. He did several tests on me to rule out MS when trying to get to the reason for the POTS. Good luck with everything and remain positive!

Link to comment
Share on other sites

Guest dionna

it just depends on how your body will react to the treaments they offer you. some recover on their own while others try for years to find the right combination of treatments to help them function. no type of treatment has worked for me yet but so many others find something to atleast help in some area. at one point i atleast had my migraines under control but then that faded and i got use to the drug. just continue to look for answers and don't give up. you may just wake up one morning without it just like you woke up one morning with it. well sort of. that is the way i look at for me. i just woke up with it. i have no idea how long i actually had it but one day i just started passing out and haven't stopped yet. i was always told by 2 years mine would be gone. if that is the case i have 10 days under one month to go! that would make 20 days, huh? that would be so must easier to just say. i still feel horrible so i'm not too optamistic about that miracle! who knows though!? i passed out again 3 days ago and i have felt horrible since but i still try to do as much as i can. i went grocery shopping for 15 minutes today without my wheelchair! and didn't pass out! but i am really sore. oh well. beggers can't be chosers. so to answer your question... just depends. i know you don't like that but... it the cards we were all dealt. i want to know what calendar day i will feel better with too. they always said okay in afew weeks you will feel better because xdrug and ydrug will work and none did. no matter what equation of drugs they gave. don't think they wont work for you though. they might. stay positive and try new things out.

dionna :angry:

Link to comment
Share on other sites

I thought I would drop a line and say that I do use oxygen and it does help some. I also went to the Cleveland Clinic for testing. I found out that I had POTS, and Low blood volume, and rapid blood flow. I also saw Dr. Fouad. I have yet to find the right meds. The one thing that has helped is the metoporol. As for the on going headaces I have tried everything form pain pills, to migrain meds, and muscel relaxers, and pain shots, and even phyical therapy and little has helped at this point. I am right now waiting for a new referal to get another option on whats going on!

I wish you the best and welcome to the forum!

Amy

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...