potsiebarbie

I just went to a chiropractor (in hopes of some relief), and he refused to adjust me, because of the numbness. He scared me by saying it's "a huge red flag" and said I needed to see a neurologist asap. 😭

45 minutes ago, green said:

Gossammarr - yes. I think I know what you are talking about.

But, all my dissociative feelings have always been brought on by using anti-depressants and then going off of them.  Dissociation lingers indefinitely, declining asymptotically with time. 

This actually gives me hope that mine will go away! 

Thank you all so much! Seriously, IDK what I would do without this forum! I saw my PCP today and he wasn't super duper helpful but he prescribed Lyrica. They keep talking about fibro, but I really don't have those "tender points". Anyway, I think I'm just having a hard time adjusting to my P.O.T.S. body, and to be honest I'm a little too preoccupied with an "underlying cause". I'm still trying to find a P.O.T.S specialist. I've also been prescribed Florinef so IDK which one to start first. I don't wanna start both at the same time because then (good or bad) I won't know what is doing what. Lol Sorry I'm all over the place! 

For the past couple days I've been getting numbness, and tingling in my right leg. Now I feel like I'm getting random "pin pricks" throughout my body. To be honest I'm kinda freaking out. I see my PCP tomorrow, but I'm really working myself up and kinda wanna go to ER, but I know per usual that will be a waste of time. Any insight?

I've had this for nearly eight months straight! I hate it. Nothing feels quite real. I feel detached from everything and everyone. Even myself. Being that it's been eight months I've started to get used to it. Honestly it's really scary for me, and it's certainly no way to live. I've talked to doctors, psych, therapist, but to no avail. I wish I had a clear cut for sure answer on what's causing it, exactly what it is, etc... Because maybe then I'd feel a bit more content. IDK. I wish I had some answers for you, but you're not alone! Hang in there! 

5 hours ago, lamp_girl said:

I feel like my POTS has gotten worse, and as part of that my muscles get sore from doing exercise very easily (e.g. when starting on some resistance level on a bike I'll be immediately sore whereas before it would take biking for 20 min to be sore at all). Has anyone had this experience? Is this fatigue, or fibro? Have you taken anything that helped?

Okay so I don't have answers, but I can relate. Not just with exercise, but I was making cookies today, and my arm ached just mixing the dough. Do you have fibro? My PCP just "diagnosed" fibro, but I'm skeptical. 

3 hours ago, StayAtHomeMom said:

How bad of a latex allergy do you have? I would ask the pharmacist if it would be worth trying even with the allergy. 

Honestly, I don't feel it's "that" bad. Basically if tape or Band-Aids have it I will get a raw rash. The worst was tape after a c section d*** near burnt my skin. But idk how latex allergies affects others so I have nothing to compare it too. The pharmacist said I could try it but if I go into anaphylactic shock I should go to the ER. Lol I figured I'd call my doc on Monday and seek some reassurance. I tried googling it, but I really found nothing on it. 

On 10/30/2018 at 7:03 PM, Potsie1990 said:

Hi love, I’m based in Los Angeles. I can refer a network of doctors that I recently discovered and an autonomic testing clinic! It’s at UCLA cardiac arrhythmia center in Westwood. It’s a bit far but, still close enough it might be worth it. Let me know if you would like them. 

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

2 minutes ago, bombsh3ll said:

Hi Potsiebarbie,

I am similar, normal cortisol but undetectable renin, aldosterone well below bottom of lab range yet sodium usually low end of normal despite salt loading. 

On paper, florinef looks like the perfect fix for me but unfortunately it didn't help & caused intolerable side effects, but most hypovolaemic folks with low aldosterone seem to do great with it so don't be put off!

What did massively help me for a year or so until my body got used to it was Licorice Root (Swanson's caps, 2 per day) which basically does the same job but without the side effects.

With florinef, my advice would be start on a very low dose and build up gradually, don't expect instant results as it can take weeks to show effect, take after food if you have a sensitive stomach, and make sure to get your electrolytes checked regularly - it can lower potassium. 

Best wishes I hope it gets you back on your feet!

B x

 

Thanks for your reply! I just went to pick it up and the pharmacist said I shouldn't take it because of my latex allergy. I'm really upset cause I don't know of any other med that does the same thing and I was really counting on this. 😥 Do you know why your levels are low? What do you do to help yourself now?

Thanks for replying! Did you all need referrals? 

I have low aldosterone (with and without salt tabs), and my blood sodium always comes out several points low even when I'm salt loading. My BP is usually on the low end (but sometimes it's nomal-ish. I'm about to start florinef, but wanted to see if anyone had a similar experience with some answers maybe. Also, renin and cortisol are normal. Idk I'm just trying to make sense of it all, and none of my doctors seem to know anything about pots, and what little I can "educate" them seems to go in one ear and out the other. I'm feeling hopeless especially with three little ones (two special needs) to take care of. Also, any experiences with florinef? Tips and tricks? Thanks in advance! 

On 6/14/2018 at 9:03 PM, Jessica_ said:

Dang! I was hoping I would find somebody who had the same thing since a lot of us share similar symptoms! I’ve had multiple chest X-rays this past year before diagnosed with Dysautonomia with all my ER visits not knowing *** was going on with my body. So yes, this isn’t a new symptom it just seems more prominent since my OI exploded. It’s dedinitely a deeper sensation but I wouldn’t call it pain, just a hot feeling in my middle back. I’ve often wondered if my adrenals are literally on fire Lol 

Did you ever find out what this was? I have something similar. 

On 11/30/2018 at 7:40 AM, mama_destiny said:

For me, my doctor was looking for signs of Multiple Sclerosis, because the symptoms I have also line up that. He had me do a brain mri, all was normal there, so he had me do 3 MRIs, my complete spine, which also showed no evidence for MS. I think they first need to rule things out before giving a Dysautonomia diagnose, if they haven't diagnosed you yet.

What are your symptoms that line up with MS (if you don't mind me asking)? I'm a little nervous/anxious about the possibility of MS, but haven't had a brain MRI yet. 

I've seen a lot about autonomic centers and have several questions for those who have used them.

How did you find it?

Did your insurance cover it?

What was your experience?

Was it worth it?

Thanks in advance! 

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? 

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. 

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?

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. 

10 hours ago, Yhoun said:

Thank you for replying. I am sorry that your pregnancy and delivery were both so hard, and now POTS, too. How are you doing day-to-day? I am moderately functional, but definitely feed impaired. I am trying to keep hope alive, and keep trying things to help myself feel better. in fact, I just made an appointment with a new doctor, so hopefully she will have some advice/ideas.

 

I really hope your appointment goes well. Please update! I am having a hard time finding doctors who know much about pots or have even heard of it. What things do you do to make yourself feel better? Right now I am trying to find the right combo of salt, fluids, and electrolytes. I also want to find more detailed info about compression garments. I have a couple pairs of compression socks, but that's it. Last but not least I found a compact affordable rowing machine on Amazon I'd love to get. I heard the rowing machine in particular is great for pots. As for day to day... I feel like I'm on autopilot. I feel like I'm slowly getting worse. I can take care of my kids, but I'm dying to just play with them and be carefree. I really took that for granted before the whole pots thing. Please let me know how your appointment goes, and good luck! Sending good thoughts your way! 

14 hours ago, Trying said:

@Potsiebarbie, hello, I do not want to cause you any unneeded concern, and I do not know if I remember correctly, but I thought that I read somewhere that if you are breastfeeding, then florinef should not be used because it could cause suppression of aldosterone in infant/toddler. You may want to double-check with the pharmacy, the online PDR or package inserts. 

I know. ☹️ I haven't even picked it up, because I'm not ready to wean. It's really hard, because if I knew for sure all my "issues" would resolve with this then I'd stop breastfeeding in a heartbeat, but at the same time if it was all for nothing I'd be devastated. I had my tubes removed, so this is it for me, and the breastfeeding bond (or whatever- lol) that I have with my girls is so special to me. My littlest actually gets mostly formula- it's my toddler that I feel I would have a hard time weaning. Idk. It all sounds dumb, and it's hard to explain. I did ask the pediatrician and she wasn't certain and said she'd look into more, but I'm just not willing to take that risk with what little info is available. 🙁

I'm so sorry you are going through this. I had my third (and last) baby 7ish months ago. I started experiencing really weird and awful things during this last pregnancy and had a complicated and traumatic delivery. I knew something was wrong and everyone kept telling me that I had anxiety or post partum depression. I got my diagnosis about 5ish months ago. My doc just recently prescribed florinef, but I am also breastfeeding. In fact, I'm still breastfeeding my almost two year old toddler too. I actually saw a cardiologist and he ran some tests and didn't schedule me for a follow up because he "felt" my pots would go away after I stop breastfeeding. I've never heard of that so I cant help but think he's coo coo for cocoa puffs. Lol Someone mentioned aldosterone, and I did find out I produce little to no aldosterone, but when I saw an endocrinologist he said salt tablets can suppress aldosterone. Idk how it all makes sense medically, because my sodium always comes out a little low too. Idk! None of my doctors know much (if anything) about pots. I can say that I feel like an awful mom since this whole pots thing. I am certainly not the mom I want to be, and not even the mom I used to be because of my health. Two of my kids are special needs, and I'm determined to "get better". I need to find doctors familiar with pots. This forum has also been a huge help. Not just with advice, comfort, and reassurance, but just to know you are not alone. Sorry for rambling! Just remember you are not alone, and from what I hear it takes a lot of trial and error, but there is hope! 🙂

This is really interesting. When all my funky symptoms started this was a big one. Headache when upright relieved by lying down. It was when I was pregnant. I don't get them anymore. Can CSF leaks just go away? How are they diagnosed?

Do you have a hiatal hernia? I get so many weird random things that I really think my stupid hernia causes since doctors can't really find much else. I've seen tons on similar issues with hiatal hernias on other forums so it seems totally possible. Just a thought! 

I think I might have something slightly similar. My muscles constantly feel like I've "overworked"  (for lack of a better term) them. They get sore and tender to the touch. Sometimes the legs but not always. Sometimes it's back, or abdomen, or intercostals, etc... Idk if I'm using or hurting them and then just totally forget because of my ridiculous brain fog or what. Lol Do yours feel like they would during a workout or like the aftermath of a workout? 

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!! 🙂