Anyone Not On Meds?

[Bigskyfam]

I'm not back to where I was a year ago but markedly better than 3 months ago with 1. Bed elevation x6inches 2. Increase fluids 3. Increase salt 4. Exercise recumbent bike( started at 5 min 3x week now at 13)

Scared to try meds for fear of feeling worse with symptoms that have gone away or symptoms I haven't experienced yet.

I can now keep up with housework, kids events and a few hours a week.

My heart rates are typically 60s laying, 80s sitting relaxed, 100s standing. Few hr surges up to 130s. Haven't hit 150 in weeks

Anyone not on meds or weaning off?

[BeforeTheMorning]

I'm not on any meds at the moment. I'm currently increasing fluids and salt, and I'm planning to start exercising next week, as soon as I've got over this cold. My New Year resolution will have to be to stick with an exercise plan!

That's great that you've seen a lot of improvement, I hope you continue to get better.

Lyla

[Bigskyfam]

V8 is my friend . If I chug a can and 16 oz of h2o first thing in the am it's a decent day. Keep us posted. Good luck! I'm in cardiac rehab I hope to get a recumbent bike for home after I finish the program

[badhbt]

^{I weaned off of my meds. If you can stay off them I think the better. I had to get off of Effexor and that was really hard. I won't ever go on that one again.}

^{Keep up the good work!}

[Bigskyfam]

How long were you on meds if you don't mind me asking? I hope to follow in your footsteps. Glad you are feeling better

[badhbt]

I was on them for a little over a year.

Keep the faith and keep asking questions!

[andybonse]

I tried Midodrine, made me feel weird and dizzy so I discontinued it. Then my doctor wanted to try Mestinon but I don't like the sound of it.

I hate taking any drug lol. So now I am sticking to exercise and seeing if I improve. I may try Florinef at some point.

[Bigskyfam]

I have a script for florinef and another bb. After the first one I'm a little shy. I just don't believe I'll ever be 100% again no matter what I try. Toying with the idea of. B12 and natural stuff. I don't want to upset my docs by not trying it... But really there is no FDA approved drug or plan for pots.

[bunny]

I'm not on meds. Tried a few different ones a few years back at the insistence of my cardiologist. Overall, my body appears to be a fighter. They'd try to "correct" something and my body would defiantly do what they didn't want it to do even worse than before. There were a couple of times where the meds made my vitals appear "better" but I felt worse, so I stopped those. Haven't been on any meds for 6+ years now.

I think BigSkyfam is doing the right things. I'd also suggest walking / standing around as much as possible. I'm on the road quite a bit due to my work. I've noticed that when I'm in urban environments where I'm walking to everything and/or have to stand around a lot, my symptoms and vitals actually improve on their own.

Just from my own experiences, I don't think anyone will ever be 100% with meds. They don't give the body the opportunity to heal / build itself back up. I DO think that getting darn close to 100% can be done for some people without meds though.

[kayjay]

Wow- I just realized how my perspective has changed over my lifetime. In my 20's I probably would have been proud of the fact I didn't take medication. I wouldn't expect someone not wear their eye glasses if they have a vision problem.

I am a former "natural is best" thinker, but medication exists to help. It's not a sign of weakness or not "fighting" hard enough. Sometimes taking medication is the smart thing to do. Medications can save/prolong life.

Side effects are something to be considered- but it would be outright FOOLISH for me not to take medications. My quality of life has improved.

I respectfully disagree with the suggestion that medication categorically interferes with healing. The opposite has been true for me.

To the OP- most likely I will take medication for the rest of my life however I am a cautious consumer with everything that I put into my mouth or onto my skin.

[kayjay]

Also- I have weaned off many meds. Something that helps now may not be necessary forever.

As for b-12 if you can get your vitamin levels checked it may be worthwhile. I'm a huge believer in a healthy diet- just how I was raised. If you a missing something in your diet or not absorbing nutrients you can feel crummy for sure.

[Bigskyfam]

Thanks guys for your input. I can see your thoughts and understand both. Since its a new diagnosis I'm holding off. I'm so glad you guys are here with me. Maybe meds in future if relapse or standstill. It's great to see what has worked for others. I work in the medical field and had my whole thought process turned upside down. My docs insist on trying meds. If I hadn't seen improvement I might have.

[kayjay]

So glad you are seeing improvement. It seems wise for you to hold off as long as you can.

Having a 3 year old niece with diabetes and RA was eye opening to me. No one in my family took medication. I'm not sure of any of us ever had a cavity or a broken bone. Without medication my niece would be dead! Dead at the age of 3. Now she is in middle school.

If you get sick enough you change your mind about medication. Hopefully that will never happen. Sadly medication that is strong enough to help can be strong enough to harm. I get the hesitation but I'm thankful for my medication. I'm a better wife, mother, friend, sister- etc because of medication.

Best wishes- and consider a b-12 check. If you are deficient apparently shots are life changing.

[castronovo112587]

No meds here just lots of fluid and more salt want to look into iv fluid therapy. Just got a recumbent bike finally and got hit Christmas night with this severe upper respiratory infection so now I had to wait to start the exercising till this is over

[Bigskyfam]

Congrats Rosie a bike for Christmas is good!

[Bigskyfam]

Kjay.. I understand and agree about your niece. I hope we can figure our disorder out so we can have more options. Closest autonomic clinic to me is tx or mn

[castronovo112587]

Yes I'm excited

[kitt]

Agree that meds are often necessary or helpful. I went off all pots meds when I got an appt in November to See Dr. Sandroni at Mayo MN in January. Stopped both Methyldopa and Clonodine cold turkey...that day in Nov.

I don't think they were the right meds for my hyper pots anyway, and felt the side effects of Methyldopa in particular was not worth it! Had problems with the small amount of Clonodine I was taking also but simply feel there will be a better combination of meds for me. Have the odd combination of having hyper pots with low BP. (I know a few others here present that way as well.)

Ironically, I don't feel that much different being off the Methyldopa and Clonodine. I felt lousy on them and didn't sleep, and I still feel awful and am not sleeping. Went off the meds when I did so as to be in as natural a state as possible for the upcoming testing.

Hoping the testing etc...they do will help her to come up with a better combination of meds.

On another note though, I'm one to 'abandon' a medication if I don't feel it's helping after a reasonable amount of time.

Best,

K

[castronovo112587]

Yes I am excited hope to one day get back to dancing in heels all night! Hope we all get back to ourselves!

[Bigskyfam]

I think I over did it this weekend. Hr high today. Argh. Despite fluids, salt. I only did 5 min on the bike as opposed to 13. Bathed, ate and trying to relax. Hope it's merely a speed bump. Well worth watching my little guy do jujitsu, mass and riding with my daughter while she drove for the first time. Hope you guys' Monday is going well

[Confusedguy]

No meds here..... Tried Midodrine and salt tabs with poor results. One thing i'm very happy about with my Neuro is she doesn't throw meds at me. My issues are wide spread and can't imagine what or how many pills I would have to take.

[fkrizanek]

I started metoprolol and quickly stopped it because it made my exercise routine difficult. No other Pots meds, but on blood pressure med, Lipisnore, effexor, vitamin d, testrosterone, coQ10, Lovaza, multivitmin and aspirin. Several episodes a day of standing up and dizzy. Soooo much fun! Dr says drink water. I drink 2-3 liters a day.I exercise three times a week with cardio and weight lifting. Nothing seems to make a detent in the frequency of the episodes.

[Bigskyfam]

thank you guys. I know my docs mean well. I figure I'll take my dads advice... When u know, u know.thats when or if I take meds. I have a low grade fever so maybe I have a bug... It will be interesting to see if I can through it med free/er free. I've read so many posts of folks getting sick and heading into er. My docs are on vacation this week. Go figure

[castronovo112587]

I am really sick right now. Went to walk in clinic 2 days ago and it was negative for flu this is day 6 with no improvement. I have a terrible cough and have cpughed so much that my whole back and chest are sore

I hope this isn't going to set me back a bunch.

[Bigskyfam]

Hope u feel better soon rosey