p.o.t.s. newbie w/ questions about symptoms

[potsiebarbie]

Hi,

First time poster- long time lurker. Lol Which reminds me to thank you all because this website/forum has been my #1 resource/comfort since my P.O.T.S. diagnosis. 

Anyway, I just wanted to describe just a tidbit of my symptoms to see if it is "normal" for P.O.T.S. 

My BP is almost always low. Once in a while it reads normal for what seems like no reason as far as I can tell. 

Here's my most concerning symptoms right now though:

A rapidly fluctuating heartrate with shortness of breath. Whether from sitting to standing or mere change of movement my heartrate just spazzes out and I swear it seems confused. It spikes and then lowers a little semi quickly. Once in the ER I sat down for triage and the pulse ox read 200! It started going down and the nurse was shocked and started taking my pulse by hand and waiting for it to go down before writing it down. 

The other thing I've been dealing with since this all started is a really disturbing sense of derealization. Nothing seems real. It's just plain awful. I've also been having lots of cognitive issues. 

Sorry for the long post but I'm new to all this dysautonomia stuff and it really scares me. I have three kids under 5 and the way P.O.T.S. has affected my mind and body really makes me feel like a crappy mom. Anyways, sorry again for the long post. I guess I'm just seeking for some reassurance and advice. My doctor prescribed florinef but it's not ready for pick up yet. I'm a little hesitant to take it because 1. I'm breastfeeding and 2. Sometimes my BP is semi normal.

Any thoughts, experiences, and advice would be gladly appreciated! Feel free to ask me questions if you need more info. Thank you!! 🙂

[Pistol]

Hello @potsiebarbie - I am sorry you have to deal with all of this on top of being  mom!!! I have to tell you that I too remember the fluctuating, erratic HR and the feeling of derealization. In the beginning of this illness I kept going to work (12 hour shifts) and had a 1 hour drive each way. One evening I finished my shift and was driving home when all of a sudden I started feeling like everything was not real. It was like I lived in a bubble and everyone else was outside of that. I stopped my car and went into the nearest Walmart - just to be around people and to get a sense of reality again. After awhile I needed to go outside and get fresh air  and after a walkaround the parkinglot I felt better and drove home. I saw my PCP and told him about that episode and he was quite concerned.  Soon after that I was diagnosed with hyperadrenergic POTS by a specialist. --- I did not improve significantly until I started taking beta blockers and the usual treatments recommended for POTS, but it took years and many trials of meds before the right "concoction" evolved. Please be careful and do try the meds your doc prescribes. There are no sure meds for dysautonomia, we all have to endure the frustrating process of trial-and-error. If your BP runs low then florinef sounds like a reasonable choice. But DO add salt, hydration and compression hose - they add a lot to symptom relief. Best of luck!!!!

[MomtoGiuliana]

Can you talk to your pediatrician regarding breastfeeding while on florinef?  I understand your concern.  I stopped breastfeeding when I started meds for POTS.  I was sad to do so but I was so non-functional that I had to attempt treatment, and I was worried about the effect of the meds on my baby.

I agree with what pistol stated that fluid and salt loading can be so helpful for many of us--and compression hose.  

I know it is scary.  It may be helpful to keep in mind that most people do improve over time.  Especially with effective treatment.

[Potsie1990]

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 

[potsiebarbie]

On 12/8/2018 at 4:21 PM, Pistol said:

Hello @potsiebarbie - I am sorry you have to deal with all of this on top of being  mom!!! I have to tell you that I too remember the fluctuating, erratic HR and the feeling of derealization. In the beginning of this illness I kept going to work (12 hour shifts) and had a 1 hour drive each way. One evening I finished my shift and was driving home when all of a sudden I started feeling like everything was not real. It was like I lived in a bubble and everyone else was outside of that. I stopped my car and went into the nearest Walmart - just to be around people and to get a sense of reality again. After awhile I needed to go outside and get fresh air  and after a walkaround the parkinglot I felt better and drove home. I saw my PCP and told him about that episode and he was quite concerned.  Soon after that I was diagnosed with hyperadrenergic POTS by a specialist. --- I did not improve significantly until I started taking beta blockers and the usual treatments recommended for POTS, but it took years and many trials of meds before the right "concoction" evolved. Please be careful and do try the meds your doc prescribes. There are no sure meds for dysautonomia, we all have to endure the frustrating process of trial-and-error. If your BP runs low then florinef sounds like a reasonable choice. But DO add salt, hydration and compression hose - they add a lot to symptom relief. Best of luck!!!!

Thank you so much for your reply! What's the method to the madness with salt, fluids, electrolytes, and compression? Do you take salt tabs, and/or increase thru diet? How much water and/or electrolyte enhanced drinks do you drink? Last but not least what kind of compression? Sorry to bombard you with questions! Lol I know everyone is different, but I'm hoping by gathering enough info and other people's experience/methods I can kinda find my groove with all this. 

[potsiebarbie]

Just now, potsiebarbie said:

Thank you so much for your reply! What's the method to the madness with salt, fluids, electrolytes, and compression? Do you take salt tabs, and/or increase thru diet? How much water and/or electrolyte enhanced drinks do you drink? Last but not least what kind of compression? Sorry to bombard you with questions! Lol I know everyone is different, but I'm hoping by gathering enough info and other people's experience/methods I can kinda find my groove with all this. 

Oh and I thought it was funny you mentioned Walmart because when I first started going thru all this I felt so much worse in Walmart. I literally felt like none of it was real and like I could just run thru the store singing or whatever (lol) because it all just felt like dream. It hasn't gotten better but I feel like I've gotten a little more used to it. Same with the tachycardia actually. Did/do you ever experience shortness of breath?

[potsiebarbie]

On 12/8/2018 at 8:30 PM, MomtoGiuliana said:

Can you talk to your pediatrician regarding breastfeeding while on florinef?  I understand your concern.  I stopped breastfeeding when I started meds for POTS.  I was sad to do so but I was so non-functional that I had to attempt treatment, and I was worried about the effect of the meds on my baby.

I agree with what pistol stated that fluid and salt loading can be so helpful for many of us--and compression hose.  

I know it is scary.  It may be helpful to keep in mind that most people do improve over time.  Especially with effective treatment.

Thanks for the reply! My pediatrician wasn't too sure, but I feel the same way and don't want to risk anything harming my daughters. I'm breastfeeding a 7 month old and an almost 2 year old. I had my tubes removed so I'm having a hard time parting with the whole breastfeeding relationship since this baby is my last (I have a five year old too). It seems silly, but I'm actually really scared to stop and then nothing help, and I will have given up breastfeeding for nothing. It makes me feel better that you mentioned lots of people improve over time. I feel like I see a lot of extreme cases, and it gets a little scary. 

[potsiebarbie]

7 hours ago, Potsie1990 said:

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 

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? 

[Potsie1990]

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. 

[Pistol]

@potsiebarbie - to answer your questions: salt along with added fluids help the BP to stabilize. For drinking I was advised to drink 8 oz water every hour at least but most memebers drink more than that. I personally do not tolerate plain water, so I drink ginger ale. When I am in a flare I drink Gatorade and broth since they are rich with electrolytes. Salt tablets make me sick, so I just add salt in my diet with pretzels, pickles or olives, heavy table salt with everything. -- Compression stockings help prevent blood pooling and drop in BP when standing up ( which is what causes orthostatic intolerance ). But they have to be fitted to your body. If there is a medical supply store in your town I would go to them, they can measure you. If you order from amazon or other online sources you should measure your calf and thigh ( at the thickest part ) and compare on a sizing chart before you order. They are VERY effective!!!!  - And to your last question: yes, I have experienced shortness-of-breath when I was at my worst. I still do if I am in a flare. --- Best wishes to you!!!!!