In Need Of Advice Please

[bequich]

HI all, I have posted a few times here, Im feeling so frustrated and depressed.

I have had pots for 5 years, was diagnosed last summer. Since being diagnosed I have been taking Midodrine, atenol, ambient (cant sleep at all without it), gabapartin (severe muscle aches) and do 1 liter of IV fluids everyday. I was doing much better once I started with the saline solution (iv fluids), I started them around November of last year.

But in the last month my symptoms have gotten so bad, the mental fog, the headaches, nausea, heat intolerance, exhaustion, muscle aches (just all of the symptoms) have gotten worse.

I see a cardiologist who knows a lot about POTS and has many patients with POTS, he says I need to do exercise but its almost impossible if I do just 5 minutes of exercise it leaves me aching and so tired I cant move. I have 3 small kids, so its not like im in bed all day, I am non stop, but there are days where I need to call family to help me becasue I cant take care of them.

I just feel like the little improvement I had is gone, and Im right where I was a year ago.

My muscles ache so much that I cant move, its sometimes physically impossible for me to move. just so weak.

If any one has some insight i would love to hear from you.

Thanks in advance. Im so overwhelmed, i have so much guilt feel like im not being a good mom, like I am just a stress for my husband......

[Joann]

I am sorry you are going thru this. I have some of those same feelings. I am a mom and wife too and have had a resurgence of symptoms these 2 months.

I really don't know what to offer you as advice, everyone seems so different. Just wanted you to know that there are some of us that understand and that all we can do is our best.

Just love your family and do your best, try not to beat yourself up about what you can't do. That is something I am battling with. I guess we have to live one moment at a time and try not to think too much about the future. About exercise, I don't know. I know for myself, that I have to make sure I do something every day even at my worst, or I seem to lose strenght; but I also know that if I do too much I will pay for it.

I am trying to force myself to eat and drink to keep strength and I have found my vitamin d levels have fallen greatly again. So you may want to check your vitamin levels too.

I hope things turn around for you too.

[ShakeyTheOwl]

Hi!

it is not easy at times.

I too have rough periods of not having enough physical or mental strength (brain fog)

and am working daily on keeping strength, via recumbent bicycle, extra steps outside (walking) aggressive standing excercises, compression stockings, etc.

Please know you are not alone, this comes with many emotions that sometimes feel more overwhelming than physical.

(at least for me it does)

[bequich]

Thanks for the replies. I am non stop all day, I go up and down stairs, take care of my very active 18 month old all day and do laundry and house work, but the doctor wants me to add more exercise to my day, with what I do already by 7pm I can barely walk and just want to crawl in a ball and cry. We had to enroll my 3 year old in daycare 4 days a week because I can't keep up with him, and my 7 year old is either in school or camp.

The brain fog is overwhelming, I'm so irritable all the time. I'm in constant pain and do nauseous that I just hate my life.

My husband works 50-60 hours a week and then comes home to help with everything, runs all the errands, does groceries, just everything.

I'm basically home 95% of the week.

I hate that instead of looking forward to weekends with the kids I feel overwhelmed and stressed (husband works most weekends).

I feel like because I can't rest when I know my body needs it, I get worse...

Thanks for letting me vent

[bequich]

I forgot, I also take vitamin D.

[Guest Alex]

I'm sorry to hear about your struggles and I can definitely understand your frustration even if I'm newer at this game than you (only 2 years of POTS under my belt).

Has your cardiologist ever considered referring you to a neurologist? A neuro may see things from a different perspective, and if it's one who's even knowledgeable about POTS it may be even better.

Have you considered any non-pharmaceutical treatment options? Or looked at possible meds side effects? (I'm biased here I know, so please don't take it personally but I read a bunch of negative stories about Ambien). Also, how about an increase in the amount of IV fluids you're getting?

Like Joan suggested maybe you should have some tests and have your vitamins levels checked. Also, in my case, I had some pretty terrible muscle aches when my potassium and magnesium levels were low - perhaps you can ask your dr to send you for some blood work?!

Please keep us posted and know that you're not alone in this.

Hugs,

Alex

[bequich]

I am not a fan of ambien either, but nothing else helps me sleep, do you have any suggestions on what could help me sleep?

I recently had blood work and the only thing that was low was my vitamin D, which has been low for a while.

I changed my diet, limit sugars (sweets are my weakness so have not cut them out completely but have reduced), eat non processed foods, cut back on starches too.

I am open to any suggestions. Im at a desperate point.

Neurologist did not have much to add to cardiologist.

[Guest Alex]

I hear you. I've tried melatonin (it lowered my BP though so if you tend to run on the low side it may not be the best idea), valerian, passion flower, herbal teas, honey, milk, relaxing music (I found some clips on youtube that really work for me). It's pretty hard to say what may work for you, but I bet you've considered or even tried a lot of things.

Has any of your drs suggested mestinon for your POTS? It's not that I'm advertising for it, but it's the only med that I tolerate that has helped me regain some normalcy. Based on what you're describing it sounds like hypovolemic POTS?!

Wish I could be of more help

Hang in there,

Alex

[looneymom]

Hi Bequich

Welcome to the forum. I do not have POTS myself but my son was diagnosed when he was 11 years old. He is now 13, but like you, he is really struggling to maintain. Exercise is good for POTS to help with circulation issues and it helps bring up blood volume which in return builds stamina. You do sound like you are getting quit a bit of exercise by what you are already doing.

My son had low D and iron. You will hurt more if you are low on vitamin D. Getting out in the morning sun can help raise your mood and vitamin D levels.

As far as exercise goes, I can only give you the advice that MAYO gave my son. My son was so weak, he could not walk. However he could ride a recumbent stationary bike. They told him to ride one minute a day (3 to 5 days per week) and to add a minute on each week after. He did eventually get up to 20 minutes but it was a very slow process because some weeks he could not go up the extra minute. He would tire quite easily so he set aside time in the morning to ride the bike. In the long run it made a difference for him because he became less tired and had more energy. However, my son has taken a set back from having the flu in January and has not been able to return to this level of exercise. Exercise does have its benefits, if you can find time to work it into a busy schedule.

[bequich]

I'm not sure what type of pots I have but from what I have read I think I have hypovolemic pots.

Dr. Has not mentioned mestinon, I will ask.

Melatonin makes me feel very ill.

Loomeymom- I'm so sorry to hear about your son, that must be so tough, nothing worse than seeing your child ill.

I know exercise is helpful, but I can't, I have tried even just adding a couple of minutes a day. It leaves me so ill that I can't function.

Running after a very busy 18 month old is non stop, I can't sit for more than a couple of minutes at a time because she is always on the go, so I feel like I'm getting some exercise, but just feel like I'm pushing too much.

Not sure if it makes sense, I'm at a loss, I was doin so much better. It's so frustrating to go backwards.

Thank you all for your responses

[margiebee]

I am someone who thought for sure I was not going to be able to improve on exercise or even do exercise at all, but I have recently finally decided to take that step and I have to say, if you can manage to get started with it you could possibly see some serious improvements as I have.

I totally understand what you're saying about having an active lifestyle, but I think the key is to be doing the right sort of exercise. I always thought because I walk lots of places I was technically being "active, but my doctor explained that exercising for POTS is different. I do 15-20 minutes of using a recumbent bike every other day, and strength training every day. I really like using the weight machines because I can be seated and its not too much cardio for me but putting on muscle, especially in my legs, has been a huge help. This is more or less the only change I have made and I have experienced drastic improvements so far. Of course its not the same for everyone and I do have ups and downs but overall it has been a game changer. I know you might not think its right for you but I just wanted to give the perspective of someone who went from zero exercise to a great improvement with it.

If you don't think you are ready for that, I also have had success taking magnesium for my muscle aches and twitches, although you have to be careful not to take too much

[davecom]

Hi bequich,

Reading your story is so saddening, but I hope you still have some hope - since you can recover, at least I believe you can, because I believe I can, even though I have not yet! I don't have any cures, but I just wanted to ask if the exercise you have tried has been recumbent exercise? When I say recumbent, I mean completely seated, not just sort of seated as some bikes are...

[bequich]

I mostly go for a run (although not in a while, I tend to feel very faint), swimming, aerobics.

Have not been consistent with any. I will definitely look into a recumbent bike.

My biggest fear is getting worse from over doing it, I feel like such a burden as it is. I also worry about the muscle aches not sure I can handle more pain, I have a high pain tolerance.

It's so hard to discuss my symptoms with people around me, they just don't understand..."you look great" comments tend to get me more depressed.

[looneymom]

You tend to over do it when you feel good. That's what POTS patients have to watch out for. I can see why it would be hard for you to slow down with a toddler. Just remember if you decide to start an exercise set a timer and if you feel worse the next day go one less minute.

Another thing that helped my son was a routine. Such as getting up and going to bed at the same time. Set time for exercise, meals, snacks, school work, ect... Does your toddler still take naps? If she naps, you nap. It would give you some down time if you needed it.

As for pain and sleep issues, I'm in the same boat with my son. He falls asleep but wakes up 4-5 times. Nothing helps with headache or other pain. My son will be seeing a sleep specialist next week. I'm hoping he can help with some of these issues. Hang in there and keep posting questions. The members of this forum are great about responding to questions. Wish I could be more helpful. Take care of yourself.

[blueskies]

Hi bequich and welcome,

Looking after 3 little kids is exhausting and uses a lot of energy and is exercise but not 'formal' exercise. A lot of doctors don't recognise childcare and housework etc. to be exercise although I think if they did it themselves they probably would. I can't work out how you'd be deconditioned when you have three kids to chase after but then I'm no doc. When I was a young mum with three kids I was super fit even though I was exhausted all the time. Looking after kids just seems to make you that way. It's such a physical job.

However, if the docs are thinking this isn't the right sort of exercise and you need another type perhaps you could do as I have just done and gone to see a physio therapist. I had a back operation 2 years ago and previous to this I had lots of good core muscle strength - full body strength from swimming and doing mat pilates. My back op made resuming pilates a bad idea, I found. You find that swimming isn't helping and some mat pilates exercises might increase your muscle pain by the sound of it so perhaps a referral to a good physio might be a place for you to start. Seeing a professional to get you back on track to build up muscle strength/physical conditioning. The physio has given me a set of six simple exercises to do three times a day. Sometimes I manage the three times sometimes I don't but I figure it's a re-beginning. Now I just need to find a physio that's closer to home as travelling across town on my own to see the one I was referred to is too challenging. But the physio has to be a good one. For sure. Not putting my back in the hands of someone who's not expert.

blue