looneymom

Hang in there Sarah. We're rooting for you. Hope you are feeling better soon.

Tyler was tried on this medication. It made his heart race. This reaction started within 24 hours.

I was passed on this information about Autoimmune Encephalities. Tyler's condition does wax and wane but he has not had any testing done for the encephalities forms. However, there has been a few times that some of the symptoms shown in these vidoes would have described Tyler in the past. Duke Hospital has been doing a lot of research in this area. Many people have told me that if place finds something that they will get your insurance to pay for the treatment. Tremors and seizues are some of the symptoms. Just my personal opinion, but I think if any of these autoimmune antibodies that are found are going to make the POTS condition worse. Trying to convience your doctor to look for them is another matter.

https://aealliance.org/

Edit: Under Read Our Blog, the first video is a general over view of these antibodies that affect children and adults. Pretty interesting stuff.

The burning sensation sound like a sign of nerve pain. Have you been to a neurologist? I would want a new set of eyes to take a look at your testing? There is something going on here and you deserve answers. Hang in there . Has anyone considered a form of encephalites? Sometimes this can come on gradually. Wishing you the best and hope you find answers soon.

Hi Jackie

On the Midodrine, I was told to make sure that my son took his last dosage 2 hours before his bed time or it would not help with his blood pressure at night. I think I was told this by his doctor but I think there are some old post on the forum that talk about this also. Hope it helps.

Glad to hear that you had such a positive experience. These research studies can be time consuming but worth the effort if you can tolerate the situation.

Will they tell you any of your results?

PEX is plasma exchange. I have read about the peer to peer review. I suspect that our doctor is already doing this on our behalf. Hang tough it's just got to get better.

bump up

Hi Sara

Are you seeing any improvement? This sound like a mess. Hope you are finally getting the help you need. Tyler does not do well with heat either.

I think I am going to get Tyler better. His doctor will be calling on Wednesday. These autoimmune antibodies are positive in Tyler. IVIG treatments do not seem to be helping. We are wanting to try PEX if insurance will approve it. It seems to have brought relief to those 4 young adults in that research study.

I had no idea that OCD could be associated with autoimmune antibodies.

I will keep posting articles as I find them.

DeGensis

That was an interesting post. I went back to look at some of my son's earlier medications. The early medications that he was on were from the benzodiazepine family. They were prescribed to help keep his vocal tic under control but his vocal tic kept getting worse. He was put on Intuniv and this really settled the vocal tics down. Most days we never hear them at all. He has been on Intuniv for 2 years and last year he was put on the extended release clonidine to help with sleep and pain issues. I am curious about the mitochondrial part and will do some more research. Thanks for posting this information. It seems that my son may not tolerate medications from the benzodiazepine family.

My heart goes goes out to all of you because I worry about my son's future as an adult. I really just don't understand why doctors cannot get this disease figured out because I only think this is only going to get worse. Finding a doctor that will work on your behalf is worth it all. I just want to encourage everyone not to give up on finding a doctor. You deserve to have your life back.

P5P is not a prescription. However it would be best to check with your doctor if you need this form of B-6. My son can only use the methyl form of B12 and regular B6 will not absorb with Methy-B12. My son has trouble with high sulfate levels and regular B-6 will make this problem worse. My son has trouble falling asleep but once he is asleep, he stays asleep. He does take the extended release clonidine and this does help with high norephrinphrine levels. These levels have also been measured and this will cause sleep problems. Our doctor suspects that he may be hyperpots but due to his medical condition he does not want to put him through that test right now.

My son did take melatonin before he was diagnosied with POTS. It worked for him a little while but there is some research that states it may raise the heart rate in POTS patients. So be careful with this supplement. I have learned my lesson the hard way with these herbal supplements and some vitamins. Start at the lowest dosage and watch out for side effects. Tyler's blood pressure would just bottom out so I learned to never introduce more than one supplement at a time. Sleep is so important. Be sure to get your doctor to check for defiencies for magnesium, D, and iron. Low levels of these can cause sleep problem.

I'm really don't know who you would report the symptoms to. Maybe CDC or who produces the vaccine. That's just a guess.

I did not realize who your doctor was until I found one of her research studies on POTS and the G vaccine. What other things are you looking into? Have you been checked for HyperPOTS? POTS is a rollarcoaster of a ride and your doctor is learning the ups and downs of this disease from you. Hang in there.

The first link for the case study does not come up but the second link for case study does take you to the research. The doctor that did this research does treat POTS patients. Here is a better link to the research.

http://onlinelibrary.wiley.com/doi/10.1111/ene.12272/pdf

We stayed up late and watched them on tv. This is an easier way for Tyler to enjoy them without the loud noise.

I posted some articles on the autoimmune side of POTS. Dr. Grubbs and other peds. doctors seem to think the kids will outgrow it but time will tell. I have a long ways to go with my son. With adults, I really don't know. I have ask my son's cardiologist this same question He thinks that it has to do with some other underlying medical condition such as dibetes, lupus, or immune related disease. He does not treat adutls but does go to some of the conferences on POTS. I know you guys are looking for your underlying causes and I'm hoping that something I post will help you find answers.

I found some other articles on the Autoimmune side of POTS. Thought I would share and hope they help someone.

http://www.dysautonomiainternational.org/blog/wordpress/category/pots/

http://jaha.ahajournals.org/content/3/1/e000755.full

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3786406

http://www.greenmedinfo.com/blog/hpv-vaccine-linked-nervous-system-disorder-and-autoimmunity

This article caught my attention. Thought it might be worth sharing.

http://next-level-nutrition.com/?p=14952

Thanks Katie. I will check out their websites.

When you mentioned the heart valve, it made me think of my son's situation. My son just had an echocardiogram when he was at the hospital. Instead of having them done every 2 years. It's now every year. Does heart disease run in the family? Or better yet could you have had Rhumatic or Scarlet Fever when you were younger? Either one of these can cause problems with heart valves later on in life. This change can happen 10-20 years later after this illness has happened. It is hard to go back and prove that you had Rhumatic fever but research is getting closer to finding the proof. I suspect that I am in that situation with my son. It's good that your doctors are going to keep a close watch on this. The MRI is a good thing for them to do if they feel like they need more information.

Your heart has to pump the blood to get the oxygen to the different parts of the body. If something is not allowing this to happen and it's not POTS related, then this may be causing your POTS symptoms. Hang in there. It sounds like you are going to get some answers.

I'm really have a hard time figuring this out. I sent this information to our doctor, but thought that someone on the forum might know the answer to my question. My son lives with daily pain and headache. So I went back to look at his testing and found a snip that may answer why my son cannot metabolize certain pain medications. These are the Snips that caught my attention.

CYP2D6 S486T +/+, CYP2D6 100C>T +/-, CYP2D6 2850C>T +/-

I found an article from St. Jude Children's Research Hospital that explains the CYP2D6 gene but it does not mention variations of this gene. So I am still confused about this information. Could anyone shed some more light on this subject? Here is the article I found. Tyler has tried many of these medications and he cannot get any relief with pain. I am really wondering if this could be part of Tyler's problem.

http://www.stjude.org/stjude/v/index.jsp?vgnextoid=4d00b53d06550310VgnVCM1000001e0215acRCRD

I don't know if it would help with the palpitations. My son takes it because he needs the methyl B doners and it helps raise GABA levels. GABA is supposed to help calm the body down.

When you go to the hospital, is any blood work being done? Are they checking for viruses, infections, or anything? If everything is showing up normal than more than likely you are dealing with a flare. Flares are no fun.

Do you have a blood pressure cuff to take blood pressures? Anxiety can cause high blood pressues but not low ones. Do you have low blood pressure? If so, it might be time to start monitoring this and increase fluids and salt.

I can understand why your life might be complicated. Your parents want the best for you and it's not easy to understand POTS. As a parent it's a rollar coaster seeing your kid go through this.

Keep trying to find a POTS doctor, even a cardiologist will work if he is willing to learn. However, it will help him understand your condition a little more if you could possibly monitor blood pressures and the activities that you are trying to do. It's like keeping a full time medical diary. When I did this for my son, I made it my daily job. I wrote down daily symptoms. I did this for several months and our cardiologist knew my son's condition was really bad with this type of documentation.

Hang in there. It will get better.

Arizona girl

What is mpo? I don't recognize this term.