looneymom

I put coconut oil in ours.

Glad you are doing better. Keep sharing your tips.

Keep the research articles and studies coming.

Sounds like you have found someone pretty special. Take care of this relationship and concentrate on whats best for you as a couple.

Thanks for sharing. Very intersting study that gives hope.

It sounds like you are accepting your situation and its great that you have a therapist you can talk to. I'm not a POTS patient but I have had the same feelings that you have expressed. I had a full time teaching career that had to come to an end due to my son's POTS condition. His illness has been hard on both of us. It helps to have support from other people and a positive attitude about the whole situation. Although, I admit it stinks to see POTS steal your love ones life away. As a former special education teacher, I thought I understood what it ment to be disabled. I truly understand it's meaning now. Just remember your priorities and take care of yourself. Choose to make your life the best it can be. Set your goals high and strive to reach them. It will be worth the effort.

He has tried the tramadol but it made his headache worse and caused his vocal tic to come back full blown. I will talk to our neurologist about the testing. Keep the suggestions coming. You guys are awesome and so helpful.

Zap, how do you use the ginger and turmeric? Do you sprinke it in your foods or make a tea?

Issie, I will check out the alpha lipid acid with our doctor.

My son has not officially been diagnoised with neuropathy. However, our cardiologist believes he is most likely suffering with it. My son has always complained of pain in his lower back and hips. He has been tried on gabapentin, lyrica, and cymbalta. None of these have provided any relief in the past. Our cardioloist has told me this can be very hard to treat. My son also has non-existent serotinon and dopamine levels according to blood test. So our cardiologist has raised another medicine to see if we can get the serotinon to come up. My son is taking fish oil and started using coconut oil in March. Our cardioloist is aware of this and has told us to keep this up. He is very open to supplements as long as they do not interfere with other medicines. Thankful to have a doctor that cares and will call our home to check on his patient. Just wondering what other natural supplements might help with neuropathy. Any suggestions?

Our favorite in the nutribullet is spinach, small banana, small orange, fresh pinapple, and 1/3 cup of blueberries. If not sweet enough, add stevia. My son and I drink one everyday. Its our favorite.

Good for you! My son is nervous about same thing. He takes his next week. Hope you have more good days and can get back to school soon. As a former school teacher, I know this is important to you. Keep up the good work!

The only thing the shake has really helped with has been the fatigue and energy issues. My son had his serotinon and dopamine levels checked the end of March and they were unreportable. So now our cardiologist is uping his Zoloft to see if it will keep the serotinon in his body.. He suspects it might have stopped working for him. My son also had a sleep study done late March. Hopefulyl this will answer some other questions.

My son was put on it for his headache, but it made it worse. It also caused his vocal tic to start up. Hope you have better results if you decide to use it.

So glad you posted this. I have really wondered about the vagus nerve. Before my son was ever diagnoised with POTS, he suffered from vocal cord disfunction and a vocal tic when he was in the first grade. My therory is his condition just kept progressing to POTS because of these conditions.

Could someone clarify bedrest? Does this mean someone that cannot get out of bed at all? Or someone that lays around alot but is still able to get up and take care and bathroom, showering, getting dressed needs.

I agree about having the mri done. Before my son was diagnoised with POTS, they did this to rule out ms.

Interesting study. My son just had a sleep study done. Don't have the results yet. Our cardioloist wants to see the results because he is thinking about starting my son on mestinon.

Hi Lynnie,

So sorry you are feeling bad. Have you tried ice or a heating pad? Maybe alternating would help. I have been told from a couple of doctors, to keep my son away from anything that contains steriods.

However when my son gets croup, he has to have prednisone to get over it. These medicines can mess up the nervous system. Keep track of medicines that help and hurt. Its one way to avoid some severe flares from POTS. There are some studies out on fish oil and nerve pain Google fish oil studes with nerve pain. Hope this helps.

Hi Potsgirl,

My son takes 40 mg 3 times a day. Are you taking your blood pressure during exercise? My son's blood pressure would literally bottom out. I caught on to this while my son was doing pt with a therapist at our home. I started taking his blood pressure while the physical therapist was working with him. It just so happen that our cardioloist happen to callrd our house during a pt session and actually spoke to the physical therapist when it was happening. I was also sending our son's blood pressures weekly because his blood pressure would bottom out when he was just sitting in the recliner.

When my started on Mididrine, he was put on 5 mg 3 times a day. So you can tell his dosage really had to be adjusted. Hope this helps.

ThanksKellysavedbygrace,

This makes more sense to me now. My son probably needs to go through some more testing but we have some test results now that our cardioloist is trying to figure out how to treat.

Thanks Corina.

This web site has been so helpful. I referred someone the other day to this site. I had an email from someone that was reading a blog that I started over a year ago. The caregiver was trying to find a doctor for their son also. Wish we had specialist in every state or specialist that would be willing to collaborate with doctors that are willing to learn how to treat POTS.

Hi AllAboutPeace,

Thank you so much for responding. Even when my son is in the recliner, he still has pain in his lower back and hips.When he rides a stationary bike, the pain is there. He has been checked out by a rumotologist but I'm wondering if it's time for a second opinion. He has complained of this pain for a long time. Since he has had the flu, he has never been able to get back up and walk. Our pt has him do an exercise where he sits down and pushes himself almost into a standing position and then sits down. He does not shake at all when he does this. However, when he is standing all the way up, he shakes from waist down and might be able to do this for 10-15 seconds. The pt and I have noticed this shaking seems to be getting more severe as each week passes. My son has never worn compression socks or hose before. Where is a good place to get these?

Hey Babe,

I thought of one other thing that might help you with meals. Have you used a George Forman Grill? It's so easy to use and to clean up. I have the family size one and grill chicken, fish, pork chop, hot dogs and veggies.

Hi lejones1,

Welcome to the forum and I hope you are also getting alot of useful information. My son has always complained of pain in his lower back and hips. So I'm wondering if its due to weak muscles and nerve pain. Nothing seems to help with pain right now. He had the flu in January and is still not able to stand up and walk yet.

A physical therapy goal for my son was to get him to sit up in his wheel chair or another chair thats not a recliner for 2 hours in the morning and 2 hours in the afternoon. I really did not know if this was possible but he is now able to do it. This goal was assignd to him in January because he has to go into a school to take the end of year testing in April. However, after he sits up for 2 hours, he hurts more and goes back to sitting in his recliner. I have noticed that he has more pooling in his legs and I even see his hands change to a different shade of color. Does this normally happened when your body is not use to being in this position for this long of time? Does this go away the more you sit up? The PT and I are very excited to see this progress but I worry about pressing him to sit up for a longer period of time. I am assuming this may be part of the reconditioning process. I know that he is in more pain and some days he gets tired more quickly especially when he has physical and occuptional therapy. For those of you that have experienced this, does the pain go away. Could his pain be increasing because he is using these muscles more to sit up?

Hi Babe,

With my sons health condition, I really started getting picky about good nutrition. I bought a nutribullet back in Feburary and I fix green drinks every day for my son and I My son also drinks protein shakes everyday. They really helps with his fatigue issues. He would not make it through the day without them. The shake is called Amplified Wheybolic Extreme 60 and I buy it at GNC. This shake comes in different flavors. GNC has a sale the first nine days of the month and thats when I buy this product. I really do think good nutrition and exercise can help POTS patients get better. Before my son got the flu in January, he was able to walk around and do a lot more exercise. He was smiling, laughing, and able to function better than he is right now. The flu just wiped him out and he is basically having to start all over again.

The other post about "What has helped me get 90% better" , think it was written last of Feburary or first of March has also influenced me about nutrition. I have started using coconut oil and coconut milk in our family's diet. The first change that I have noticed is that my son's blood pressues are becoming more stable. My son used to wake up in the morning with the top number always below 95, in the last two weeks the top number has been over 105 or more. There is lots of information about coconut oil on the web. As far as liquids are concerned, my son drinks 2-3 liters of water or gatoraide. He usually drinks gatoraide with lunch and supper. He drinks two shakes a day. However, if he goes over the 3 liters of water/gatoraide, he is in the bathroom quit a bit.

It's hard to find a good doctor thats understanding and knows something about POTS. I just happened to find a cardiologist that knows something about POTS and he is wonderful to work with by phone. Have you looked at the physicians list on Dinet? Good doctors are hard to find. Really don't know what type of doctor to recommend, but maybe someone else on the forum can give you some ideals. Take care.