Potsie1990

I have tremors as well also. I tested and was found to have adrenergic issues. 

On 1/24/2019 at 8:08 PM, JonathanyLynch said:

I heard that Dr. Chia is a CFS doctor in LA.

Dr. chia has an almost 2 year waiting list and you must be referred with proper labs to be accepted. He’s near me and I tried, but try my docs first. UCLA has great docs 

I have a whole list of doctors.

Dr. Eric Munro primary (he is a real life dr house)

Dr. Hannah Homafar vascular neurology 

Dr. houman Khakpour UCLA electrophysiologist (he diagnosed my pots and all my other things)

Dr. Amir rabbani ucla cardiologist

ucla has an autonomic testing center inside the Ronald Reagan cardiac center in Westwood 

i did 2 tilt tables, Qatar, valsava and all my testing there!!! Got a full diagnosis and started treatment 

I can not have vaccines, flu shot, or Botox without a severe crash and relapse!!! The last vaccines I got before my trip to Africa (before I knew I had pots) I was soooooooooooooo sick. Took months to recover; and never did fully

6 hours ago, Pistol said:

I am happy to hear that you are doing better!!! I was a trained figure skater in my youth and certainly understand how much joy it brings - good for you to have an activity that is good for you, gets you exercising and brings you pleasure!!! 

Thank you so much! It’s truly is my new found passion. Nothing makes me happier than being on the ice. To think a few months ago I was crying and depressed with life and couldn’t move, and to now be able to experience so much joy.... it’s the greatest gift. I don’t know how long this will last, but for now I am enjoying my life and I’m trying to make up for the year I lost. 

Well, I react to alitude changes so I can believe it. Lol we live on top of a large hill by the ocean in LA and when I’m at my worst, I can’t breathe about halfway down. You never know pots! I get joint aches too when it’s cold. 

Hi everyone, sending an update. 

Still doing the nicotine. I get a flare every 2.5 weeks, and still needs rest days after extremely active days. My cardiologist, neurologist and electrophysiologist all gave me the green light to continue the nicotine because they say that quality of life is more important than me suffering. 

I started figure skating!!!!!!!!!!!! I skate for a full 1.5 hours now and starting working with a private coach! And I mean REAL skating, nothing slow! I chose this as my physical activity because I have to be ina  temperature controlled environment because of my heat intolerance and sweating issues but it works! I can actually breathe and it’s so awesome! 

Again, I know this is a controversial form of therapy but I just want everyone to know strange things help certain people. My life and symptoms  100% more manageable now and I can now enjoy my life! I still need to salt load and do my pots things but I am d*** near normal now! (Well, as normal as one can be with this. Lol) 

there is hope, and don’t worry about being judged by other people for doing what works for you. This is not a one size fits all disorder, and if there’s anything we have all learned, the treatments are the same way. I’m actually going to be cleared to fly soon  

On 12/22/2018 at 3:37 PM, potsiebarbie said:

I'm in the L.A. area too! I'm having an awful time with doctors. I would love some names! 

Please message me, and I’ll give you my list! 

On 1/22/2019 at 11:25 AM, CuriousThinker said:

@Potsie1990Wait, what? I'm prescribed 240mg mestinon daily. Taken as 60mg four times. I just took my first dose about 3 hours ago. I was worried about taking these medications because of the side effects, but finally decided to give it a try. My other one is florinef.

At the moment I feel like I can't eat anything and my stomach is all full and also I'm having weird symptoms with my eyes and muscles being all jumpy.

Yes, I had a really bad experience. Just monitor yourself and hopefully everything will be fine for you! If at any point you feel off, start documenting your vitals. 

I would advise to try and find a form of birth control that works for you. I cannot live without it. I wasextremely ill, and was off of it for a whole 6 months and just kept declining rapidly. I could barely move my any limb and was on a walker, and I’m an otherwise healthy fit 27 year old. I just recently got back on with a few other things and I feel like a whole new person. I also have horrible cystic acne when I’m off it, and when I’m on bc I have perfect flawless skin. Maybe one tiny pimple a year! 

I will say i only tolerate Yaz. It’s monophasic I think and I actually lost weight and have no side effects from it. Its the only thing that helps me retain fluid and increases my blood volume. Without birth control, no amount of salt would help and IV saline worked only for a few hours. 

It might be the specific type you are on, but my POTS doctor mentioned that hormones such as estrogen can trigger autonomic flares when they naturally fluctuate. I still have not so great weeks the week before my white pills (which is when I’m supposed to have my period, but I skip them) but the first 2 1/2 weeks are amazing. 

My pots is greatly affected by my cycle. I have been on Yaz for over 10 years with no problems

35 minutes ago, potsiebarbie said:

Thanks for replying! Yes, I had a hard time explaining it to people/and docs, and I'm pretty sure everyone thought I was nuts. Lol I'm glad yours went away when your BP stabilized. That gives me hope! Did you do anything in particular to get your BP back on track? 

If you search through recent threads I have a post call Smoking Helps Pots? 

I will warn you, it’s long and unconventional but considering I was on a walker with severe POTS that left me immobile with terrifying symptoms and now I can live normally again within a year, it may be worth reading. I’ve tried most of the conventional treatments and all failed. 

1 hour ago, StayAtHomeMom said:

That sounds amazing. I am glad you found a combination of things that work for you. 

Thanks so much. It’s been a year since I came down randomly with severe POTS (although I’ve had it my whole life undiagnosed) and it’s been a wild year of ups and downs, with more downs then ups. And I was only diagnosed officially in October, so it took 11 months and a stroke of luck to get a diagnosis. I am grateful for this time of health and will treasure it until my next flare. 

Omg, I’ve had all of this. The de realization is the worst! I couldn’t explain it to anyone. 

Im so sorry but mine only went away when my BP became more stabilized and nerves calmed down. 

Feel better 

I had this as well and still continue to have it from time to time. But for me, it’s aggravated by too much salt and what position I’m laying in. It might be nerve related. Be aware of what position you are laying in and see if changing it helps. It you noticed you had a high salt intake that day, try reducing it and see if it helps. 

They sell cooling socks on amazon, it doesn’t help the entire leg but definitely helps the feet. I also use mint essential oil and spray it on my legs to give a cooling sensation. 

Feel better 

I was left with severe muscle weakness at its peak and almost suffered a stroke later that night while in the hospital. I had temporary paralysis for over an hour as well. I tried 10mg. I’d be cautious. I heard it helps some people but left me worse. It took me 3 weeks to recover from the meds and gave me even worse chest pains and spasms. My neurologist and cardiologist took me off immediately after 1 dose 

Hey everyone,

thought I’d give another progress update :

i consulted a new POTS Cardiologist here in LA and we decided to get myself back on Birth Control as my POTS is worse with my naturally fluctuating hormones. 

Ive been on generic YAZ for about 10 years and I can’t live without it. Every other birth control makes me severely ill and aggravates my POTS. I also have severe orthostatic hypotension which this helps also.

so I don’t smoke, but I am still vaping. My cardiologist, who is Harvard educated and is with UCLA has given me the permanent green light to continue with nicotine. I have all 4 of my doctors on my team giving me a full yes to continue. That being said, I am not addicted to nicotine and I likely will never be according to them. I have no cravings for nicotine whatsoever and actually have to remind myself to do it. That being said, if you suffer from addiction issues I would be cautious. I guess I’m one of those people for who nicotine addiction just isn’t a thing. I’m not the only one, several people online I have found are the same. 

That being said, adding salt into my diet, resting and adding back the Birth control and vaping has been a miracle for me. Just 2 months ago (during my testing phase which I was off everything) I was on a walker, and had muscle weakness so bad I could barely breathe or move my arm without nearly passing out. 

Now, I am almost in remission. I have resumed normal activities. I still need rest days and an IV treatment here and there but I am feeling great! I can run! And I’m actually starting ice skating lessons as my choice of physical activity for POTS. 

And as a reminder, I have tried 4 of the Meds typically given for POTS and OH and AI and all 4 have failed and one left me in the hospital with severe bradycardia and almost temporary paralyzed for an hour. So, for myself I can say that I’ve tried a few things already and they are just not working as I have a severe sensitivity to meds

Just thought id share. I know it’s not conventional but at the end of the day it’s about quality of life. If anyone needs advice on finding doctors or getting treatment I will be more than happy to share my doctors info with anyone. 

This combo worked for me, and hopefully it can help someone else too. 

Dr. rabbani (cardiologist) UCLA Los Angeles 

Here’s a little something I made. Hopefully it will make you laugh a little. Lol  

Yes, and it can be severe, but just had an EMG 48 hrs ago and they found no neuropathy or muscle damage. It must be a pots thing 

Wow, I feel like I could have written this! 

I just got all of my official diagnosis on Oct 5 2018, and the past month as been a treatment phase. All of them have failed except the IV saline, which is too painful for me and the effects are temporary.

i have a post regarding smoking and pots, but have switched to nicotine. It’s a stimulant and I react very well to it! When I’m vaping I can RUN!!!!! I am my old self!!! It’s amazing! 

My yale educated cardiologist, John hopkins investigative medicine doctor, and my Harvard educated electrophysiologist all gave me the green light for vaping. Might ask yours as well. 

They are also about to start me on adderall 2.5mg. My cardiologist has seen wonders with low dose therapies for autonomic dysfunction. I tolerated it very well in high school for ADD (I had undiagnosed POTS) and was even an awarded athlete! It allowed me to have a life! I never had problems until I got off.

I would call around and see if you can find another doctor who is more educated in “outside the box” therapies. 

Mine is in my left arm! It goes through my shoulder, down the arm and to my pinky. It’s intermittent. Seems to only come when im having a flare 

I would be very, very, very cautious. The Mestinon 30mg made me incredibly weak, almost paralyzed like within the the peak 1-2 hours after taking it. I also suffered a horrible relapse of symptoms after. I was totally fine before (treating with nicotine which my cardio, neuro and pcp approved ) and the Mestinon screwed me up so bad!!! My pots went to a whole new rock bottom! Didn’t sleep for 3 days and now have a cardiac event monitor for 16 days as my heart starting pausing for 5 seconds and I had trouble breathing at night! 

Not trying to scare you but please go slow in case this happens to you! It’s horrific! 

Hi guys, just an update 

did all the Autonomic testing and two TTT’s... and passed all with flying colors! Got positive everything. I have “mild general Autonomic impairment” with Orthostatic Hypotension and POTS! But they categorized it as the Adrenergic type? I scored a 3... but then they said it was most likely due to adrenal insufficiency (not like addisons).

Unfortunately I tried 2 different meds since, both failed with adverse reactions. 

Will be posting another question soon when I get the energy to type it. 

I personally have problems with the slightest altitude change when I’m having a flare. The only thing that helps is your regular meds, whatever keeps you normal usually, and then take a rescue med in case you need it. when it’s bad, an Ativan calms down the attack that happens when my ANS senses the pressure changes. 

I literally just talked to my neuro about this today. She agrees it’s different, and she says it’s bexause it’s directly administered into the vein so there’s better retention. I was going 5,000+ mg sodium a day and it did nothing but make me thirsty and poofy. 

You might have to find a more competent doc and/or find some literature online, print and take it to them.