First crash since being diagnosed with POTS. Now what?

[jayut]

Hello,

 

I am new to the forum. I was diagnosed with POTS on Nov 1, 2017 after 3.5 years of searching for answers. 

 

Since being diagnosed, I have adopted most of the common lifestyle changes and I take 0.1 mg florinef. I have seen some benefits, but was still fighting to make more progress.

 

One month ago, a combination of events has sent me into a tailspin. The events were (1) trying to taper off zoloft too quickly, (2) tested Propranolol 5 mg BID, and (3) overextended myself while trying to keep up with my family during spring break vacation. I since have reinstated Zoloft about 4 weeks ago, stopped taking the propranolol, and spending a lot of time bed bound. However, recovery doesn't seem to be happening.

 

Can this wonderful community help me with the following?

1. What are some strategies people have used to to stop a crash and get back to a more functional state?
2. Is there anyone on this board that can recommend dysautonomia POTS doctor in the Austin, Texas or Houston, Texas area?
3. My current doctor seems very focused on managing the illness symptoms which seems to be par for this illness; however, I am very interested in digging much, much, much deeper with some testing to try and find root-cause. Are there any resources that I could read that could provide direction and testing recommendations for attempting to find root-cause?

Other comments that may help.

1. I completed Mayo Dysautonomia panel. VGCC antibodies were slightly positive; therefore, we tried a round of IVIG in Oct 2018. I got aseptic meningitis so that was put on hold 5 months ago. We are going to re-run that panel again once I can get to the hospital for a blood draw.
2. I have tested Pyridostigmine, but it didn't seem to have any affect in a positive or negative way.
3. Usually, I have an elevated HR and slightly lower BP when I become symptomatic, i.e. 110/70 on florinef and 80/50 prior to florinef. However, in this crash I seem to have elevated HR, but very random BP ranging from 110/70 to 145/95. Having an elevated BP is completely new to me and I don't know what think or how to react to this ever changing and random BP situation.

[dancer65]

In my opinion it's all about finding your own balance and it's not easy ! I live a very strict routine but it works for me ! Meds, exercise, rest, meditation, sleep, diet and not feeling guilty or pressurised by other family members or friends to push through when you really know your can't.  The latter can be very tough but after I have made myself ill by trying to please others, now I am selfish about my health 

I had very low BP and during flares or syncope it would fluctuate up to 175/150, my syncope nurse told me it's the body trying to find equilibrium,  it has a name but for the life of my can't remember it sorry! Since getting my BP from being low this no longer happens to me except when I have a virus etc.

I hope you feel better soon x

[Pistol]

Dear @jayut - welcome to this forum! I am sorry that you are having such difficulties. Those are a lot of triggers all at the same time!!! Regarding your meds: why did you stop the propanolol? It may very well be helpful to you. --- Your question about how to stop a crash: there is only one way that I can do it - hydration ( in my case IV fluids ), rest and exercise. In the first days I stay mostly in bed but do recumbent exercises and stand up every hour at least to prevent from worsening orthostatic intolerance. Once I start to feel better I slowly spend more time upright and do core and leg exercises followed by rest periods. Then I start to take a brief walk, just a few minutes but more every day. This regimen has helped me through many flares. It is always tempting to wait it out in bed but this makes everything worse, targeted exercises are key, to your tolerance and gradually increasing. 

How were you diagnosed? Did you have a TTT? Often this can point towards the type of POTS you have by monitoring your Bp ( drop or elevation when upright ). Also - have you been diagnosed with EDS? Have they checked your neurotransmitters? You may want to be evaluated by an autonomic specialist or an autonomic clinic. There is a list of physicians on this site that might list someone close to you but often people suffering from dysautonomia have to travel out-of-state for specialist care. 

It is not unusual to experience fluctuating BP as you describe - slow reconditioning - as I mentioned before - is key in establishing balance. I hope you will feel better soon. Be good to yourself and be patient. 

 

[jayut]

A lot of good questions.

"why did you stop the propanolol?"

I was only on it a week and then started declining fast. I assumed propanolol may be causing my decline.

" in my case IV fluids"

I wish I could get my doc to give me an Rx at an infusion center. I have been going to ER when I am in desperation, but it is expensive and not a relaxed environment.

"How were you diagnosed? Did you have a TTT? Often this can point towards the type of POTS you have by monitoring your Bp ( drop or elevation when upright )."

Yes, TTT diagnosis at Austin Neuromuscular Center, but treated at another clinic. I was not given a type of POTS from the doctor. My BP was very stable during the test. It isn't until this current crash that my BP started going much higher than usual. Up to 145/95. I have never seen my BP this high. When checking myself I have always had lowish BP.

"Also - have you been diagnosed with EDS? " 

I have not been diagnosed or tested for this condition. How is this tested?

"Have they checked your neurotransmitters? "

No. I have been asking for this, but doc doesn't seem interested. Does the test have a proper name? My current doc seems to want to do trial and error with meds to see what sticks. This isn't working, because I seem so sensitive to things and when we are wrong I always seem to have the worst possible side effects.

I can very easily travel to Houston and stay with my parents. Is there anyone that can recommend a doc or clinic in Houston?

[Pistol]

4 hours ago, jayut said:

 My current doc seems to want to do trial and error with meds to see what sticks. This isn't working, because I seem so sensitive to things and when we are wrong I always seem to have the worst possible side effects.

Being overly sensitive to medications is part of POTS - since the ANS is already not functioning the addition of meds can initially  set off an undesirable reaction. In my case - and many other POTS sufferers - it is not unusual to have your doctor attempt to find the right treatment for you by trial-and-error. It was the ONLY possible way for me to find the right combination. Since there is no " one-size-fits-all" medication ( treatment is highly individual ) we have to be brave and give different meds a chance. In my case I have found that I did not find out how I responded to meds until I tried them for a while ( unless I had SERIOUS side effects right from the start ). I also have found that once a med worked I had to gradually increase the dosage over time. I do not know if you feel this way but I often expected a new med to be " THE ONE '- the one that cures me - just to find out that despite effective meds I still had to adjust my lifestyle in order to obtain ( or even maintain ) a certain amount of control over my symptoms and abilities. Today I am somewhat controlled on meds as well as balancing my daily routine with a careful regimen of rest and exercise.  --- Please give your doc a chance - you are lucky if you have found one that is WILLING to try. Many docs will not do that b/c finding the right treatment is just as frustrating for your doc as it is for you. 

[jayut]

On 3/29/2019 at 2:12 AM, dancer65 said:

 ... and not feeling guilty or pressurised by other family members or friends to push through when you really know your can't.

I had very low BP and during flares or syncope it would fluctuate up to 175/150.

I'm a people pleaser. It's so difficult for me to say "NO"

Good to know about the high BP. I'm glad to know I'm not alone. I feel like my nervous system is struggling to find homeostasis. The slightest misstep and it goes back onto chaos and my symptoms go through the rough.

[jayut]

16 hours ago, Pistol said:

  --- Please give your doc a chance - you are lucky if you have found one that is WILLING to try. Many docs will not do that b/c finding the right treatment is just as frustrating for your doc as it is for you. 

Yes, I am lucky. He is very patient with me and is willing to try. I have had 32 doctors before him that gave up on me.

[jayut]

Just got back from ER. They gave me 2 liters of saline. It didn't seem to help like it had in the past. It seems like my worst symptoms are extremely low appetite and naseua. I try to eat but it just leads to naseua and I vomit if I eat too much. I've lost 15 lbs in the last 6 weeks. This seems excessive considering I'm 5'11" male now weighting 130 lbs.

[Pistol]

@jayut - I also used to have severe nausea and GI problems with a flare. Zofran helped me for the nausea and snacking every 2 hours instead of meals also helped. Drinking was always a challenge since water made me more nauseous. I found Gingerale to help me with that. --- Have you had an EGD or seen a Gastroenterologist? 

[jayut]

6 hours ago, Pistol said:

@jayut - I also used to have severe nausea and GI problems with a flare. Zofran helped me for the nausea and snacking every 2 hours instead of meals also helped. Drinking was always a challenge since water made me more nauseous. I found Gingerale to help me with that. --- Have you had an EGD or seen a Gastroenterologist? 

I have, but the one I saw didn't seem to have a clue about gastroparesis and dysautonomia. He wanted to do a colonscopy, but I declined. For some reason, it didn't make sense in my head.