Support And Advice?

[MomWithPots]

Hi, Im 22 and have had pots since I was 14; just diagnosed two yrs ago. I am a mom of 3 and married to a trucker, which means I'm alone 3 weeks a month. My main symptoms include constant fast heart rate (especially upon standing) and a low heartrate (40's) while sleeping (ironic!), dizziness, extreme brain fog, leg pain, and my newest and most annoying symptom, nausea! Just looking for some tips on how to manage...I'm optimistic most of the time, but when I have bad days, I tend to get depressed. I also feel like a bad mom sometimes when I just don't have the energy to get down and play with them Any other moms dealing with pots? Also any tips on brain fog and nausea would be greatly appreciated! I can deal with the heartrate, I'm used to it by now...but this nausea feels like constant morning sickness!

Thanks for any replies...its so nice having a place to come too. It took years to get diagnosed, so it makes u feel alone sometimes.

[gjensen]

I imagine it is a challenge with your young ones.

I am like you in that I am optimistic most days, but then I have days where it gets to me.

I am also like you with the HR. That is the least of my concerns most of the time. For me it is my head symptoms that is the most debilitating. Someone will chime in with some nausea tips.

Don't get feeling like a bad mom or getting down on yourself. As a father I can relate, and that is my largest emotional concern. I tend to get down when I consider how this affects my boys and my wife. It just makes matters worse though when we get down. I used to tell people to not worry about the things you cannot control, and it is good advice. Advice I have had trouble following lately.

I really have nothing to offer, because I struggle with much of the same things. There is a lot of people on here that are pretty sharp and with experience.

Good luck to you.

[BeforeTheMorning]

Hi,

A year or so back I felt nauseous all the time so I can relate. The thing that I found helped most was cutting out lactose, so only having lactose free milk, etc. Have you tried anything like that?

Best Wishes,

Lyla

[corina]

Hi momwithpots, welcome to the forum!

[sparrowkate]

I really do feel for you. Constant nausea makes everything miserable.

My 16 year old daughter, Issy, has had similar problems for the past 2 years. We have tried lots of different ways of coping with the nausea and brain fog.

For Issy, things improved dramatically when she started taking Florinef a few weeks ago. The nausea reduced significantly. She has colour in her cheeks, is chatty and quick witted, and is eating and drinking better. It is early days with this yet, but so far - Wonderful!

Other things we have found helpful:

1. Increase salt and fluids (check with doctor before increasing salt). Difficult when feeling nauseous!

2. Eat little and often. Keep tempting snacks to hand, for when you feel able to eat them.

3. Keep a food diary. See which foods improve matters and which to avoid. Ginger and mint can help.

4. Get any other basic gastro problems sorted. Issy had duodenal ulcers and slow gastric motility. She also had swallowing issues because of eosinophillic oesophagitis.

5. Reduce stress where possible. I guess this may be tricky for you, with your little ones, but if you can get any extra support, then do. Our gastro consultant described it as a "nervous stomach".

Keep trying different things until you find what works for you. It sounds like you are doing a great job in keeping going, even though things are tough.

Sending you very best wishes from here in England and hope you feel better soon.

Kate

[looneymom]

Hi and welcome to the forum. Have you tried ginger tea with honey? Fresh ginger steeped in water smells wonderful. Peppermint seems to also help my POTS son when he is at his worst. Hope you feel better soon.

Rachel

[srb]

Welcome MomWithPots. Many of sparrowkate's suggestions above are just what I am doing currently to try to manage my symptoms (which are more mild than many others on this forum). The grazing/snacking method of eating has really helped me. Also drinking Gatorade or carbonated beverages.

I definitely understand some of your feelings as a mother. My inability to 'keep up with' my two toddlers some days or even play with them like I feel I should was and sometimes still is very difficult. This is also what motivated me to keep pursuing help from the medical folks even though I wanted to quit. I don't like going to doctors and the expense is difficult for my family but I kept reminding myself that I had to do everything I could to improve how I was feeling for my children's sake. One thing that's been tough is that my 3 year old starting really acting out during the times that I was feeling the worst. I'm not sure if she was angry because Mommy wasn't her usual self or if she was anxious about it - or both.

The brain fog issue is one that I haven't been able to figure out either. It can be very upsetting as a mother and as an employee. I am interested in any tips for that symptom as well! Yesterday I bought a coffee at work and got sugar/creamers and then walked away without the coffee. Didn't even notice until later in my shift. So embarrassing. I have never done things like that in the past!

Do you have a good support system outside your spouse (since he is away so often)?

[MomWithPots]

Thank you all so much for the replies! It helps just being able to relate to others for a change I am very grateful as I know many people have it a lot worse than I...I think we all have those depressing moments on the really bad days though..

*BeforeTheMorning - I have never thought of lactose! I will definitely look into that. Have u heard of the gluten free fad that's going around? Just wondering if that may help with Pots? Seems to be the new craze and people are saying its transforming their health.

SparrowKate - Thanks for the suggestions! I love to eat, so I'm just starting to "graze"..I used to over eat and that made my symptoms extremely worse! Its just hard for me to keep weight on, I'm 5'7 and 115. I'm in the process of keeping up with what I eat. Don't want to over eat, but don't want to loose any weight either! If I feel bad all the time, I was hoping I could still have some curves I am consuming lots of water but still need to talk to the doc about salt..does it really make a difference in symptoms?

Looneymom - Thanks for the tip. Ill try ginger! I thought about lemon drops as that was what I used for morning sickness..

Srb - Nice to hear from a fellow mom! My kids are 2, 4, and 6 so I know the toddler stage! As moms we do anything for our kids though and as long as we are trying, I think that shows we care I can't figure out this brain fog either! I'm not having memory problems, it just feels like im disconnected from the world..hard to explain. It is very unsettling though and it makes me act funny! Kind of entertaining after the fact! I don't have a huge support system. I was raised in a lower class family with no health insurance. They took me to the doc once and I was diagnosed with anxiety, I guess standing made me anxious So for a few yrs no one believed me. The day I was officially diagnosed was like winning the lottery! A weird statement being told ur ill, but at least now I have a doc that believed me! So I tend to shut people out now and keep it to myself while I'm sick. Part of me is hurt that I wasn't believed and the other part just doesn't wanna be a burden. My husband is amazing though! Even though he is not physically here, we talk at least 4-5 hrs a day...his emotional support gets me through

Sorry for the long post...Thanks again for the helpful tips! I hope u each feel wonderful and stay in high spirits!

[badhbt]

MomwithPOTs I would have to say going gluten free has been the best thing that I have done for my POTS. I would suggest at least giving it 2 weeks to see if you notice any changes. It helped my visual problems and my brain fog. I wish it could be a cure-all for everyone, but I know that isn't going to be the case.....but if someone gets relief from it like I did....it will make my day. So I am going to keep telling people....try gluten free

[MomWithPots]

Badhbt - Thanks! I am willing to try anything...was it difficult switching? I love my food lol, one of my down falls

[badhbt]

Not really, there are so many alternatives now. 1 in 130 people are diagnosed with Celiac disease so there is a lot of awareness now. Most restaurants have Gluten Free menus. Believe me, if it makes you start feeling better you won't ever want to eat the stuff again

[srb]

I'm glad to hear that your husband is super supportive. My spouse also helps me very much, though sometimes it's hard because he hates doctors and medical issues. I know he is trying really hard to help now that I have at least a semi-diagnosis! I empathize with what you said about insurance, since neither my spouse nor I have health benefits through our employers. I also hesitate to tell people anything about this, even if I'm feeling extremely lightheaded or symptomatic at the moment I'm talking to them. It feels awkward to explain and I also fear being dismissed as weak or anxious.

Reading your reply to SparrowKate, I see that we have similar eating and weight characteristics. I have always had a very low BMI, but experienced my lowest point last year right before all these other symptoms started. I had started trying to gain weight but the things I was doing didn't seem to be working. Now that I've started some of the natural recommendations for dysautonomia/low blood pressure, I have actually gained weight (plus I'm trying supplements from a naturopath). Yes, I would love to have some curves, too, lol.

Hope we can keep in touch since we seem to have some things in common.

[Christy_D]

My son's worst symptom was always nausea, debilitating, bedridden, nausea...for over 4 years. He tried every over the counter med, diet changes, and many, many prescriptions medications. Last June, he started Klonopin and that was the medication that we were waiting for. While he still has 24/7 nausea, it is barely there and he can now function again.

Fludrocortisone took his dizziness away as well.

Trial and error might take awhile, it took us 4 years, but don't give up. Something will eventually help.

Christy

[MomWithPots]

Badhbt thanks for the info! Your right, if it works I don't mind adjusting my diet! I cut out all caffeine 3 yrs ago, including chocolate...if I can quit chocolate, gluten should be a piece of cake

srb, seems like we are in the same boat! I would love to stay in touch It'd be nice having a friend to discuss pots with and not feel like I'm boring them to death! Feel free to message!