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Bigskyfam

For Those On Meds

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When you find a med or meds that work for you... Do you ever feel like you did pre-pots? Does it just improve symptoms, alleviate some symptoms or complete 180? Hope this makes sense...

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Yes. But this was trial and error for for my son. My son wanted medications to alleviate symptoms. The biggest deal for my son was sorting out symptoms and figuring out what they were related. Not all of his symptoms belonged to POTS. Some of his past testing has been very helpful in figuring this out. So instead of just listing the symptoms that were bad, I listed a few test that were helpful to us. The post is a little long but hope it helps.

The 23 and Me testing was helpful because it helped his doctor figure out that he had needed the methyl B vitamins. My son takes a prescription form of L-Methylfolate (Deplin) which is very helpful for brain fog and cellular energy. If pain levels were not overwhelming, he could concentrate on school work.

Other symptoms that my son suffered from happened because of antibodies that built up in the brain that were caused by strep, mycoplasama, and other virues. The only way to get these antibodies out of the system is to boost the immune system with IVIG or remove the antibodies through Plasma Exchange. Ten months before my sons POTS diagnosis, he had Mycoplasma pneumonia and a few weeks later his headache and scalp pain started. To keep the infections at bay, my son takes minocycline and penicillin daily.

His headache and scalp seemed to be his worse symptoms. Through research I learned that the scalp pain was most likely a nerve problem because all the nerve roots are in the scalp. Tyler tried all the medications possible to get relief from the headache and scalp. The first medication that brought some relief from the headache was Extended Release Namenda. This medication regulates NMDAR receptors. When these receptors are not working right, the glutamate neurotransmitter levels go sky high. These levels were cofirmed to be high through a neurortransmitter level test. I have always been suspecious that Tyler might have had NMDAR encephalites but it would have taken a spinal tap to confirm that diagnosis. However, if that was part of the problem, the plasma exchange would have taken care of that problem. In addition to the extended release Namenda, adding Low Dose Naltrexone this last July was a major turning point for Tyler. After being on this medication for 10 weeks, his headache and scalp are totally gone. LDN does help with nerve signaling and his tremors are much less. Tyler was also able to stand and start walking the month of November. I'm sure that LDN also had a part in this because many MS patients that have not been able to stand for years, regain the ability to do this after started on LDN.

Another important test that Tyler had run was the Neurotransmitter test. He has had 2 of these. One was done 3 months before the POTS diagnosis and the other 2 years after the diagnosis. In addition to these test, he also had a spinal tap to check for amino acid defiences. Amino acids are the building blocks for neurotransmitters. He was deficient in the amino acids to build serotinon. So this would explain why Tyler needed the Zoloft to help keep and recycle his serotinon. His neurotransmitters test showed low levels of GABA and Serotinon and high levels of Norephrinphrine and dopamine levels. High Norephrinphrine levels and dopamine levels can also cause sleep problems. To solve the sleep issues, my son takes extended release clonidine at night. Otherwise, it would take him a couple of hours to fall asleep and then he would wake up every hour on the hour. Extended Release Clonidine has been the answer to sleeping throught the night. A sleep deprived body cannot heal itself. Sleep is a must for every POTS patient.

Tyler does take Midodrine. However, 4 months ago, he was able to drop down to 20 mg 3 times a day instead of being at 30mg 3 times a day. The Low Dose Naltrexone was the last medication added and it took care of the headache and severe scalp pain. His leg tremors when he is sitting in his recliner are much less. However, I thought the Low Dose Naltrexone was helping more with sleep and I weaned Tyler off of his ER Clonidine with the doctors approval. A week later, Tyler was back to sleepless nights and other symptoms that we have never seen before. He was quickly put back up on his normal dose but it took a month to get his normal sleep pattern back. All of the OCD symptoms are gone except one, but it's much less. ER Clonidne is regulating sleep, norephrinphrine, and dopamine levels. If dopamine levels get to high, then depression and anxiety can set in. One way to counter act this is with a high protein diet and taking supplements of GABA and L-Tryptophan. A book called The Mood Cure by Julia Ross goes into detail about diet and supplements that help balance dopamine, serotinon, and GABA levels. Tyler's doctor wants him to try weaning off the Zoloft, when this last symptom goes away and continue with the L-Trypyophan.

As you can tell, Tyler is on several medications but all of them are necessary to be on. In the last 8 months, I have actually tried (with doctors approval) to wean him off of ER Namenda, Zoloft, and ER Clonidine. Whenever, I did this his symptoms got worse. All of these medications are used to regulate neurotransmitters. So having a neurotransmitter levels checked might be helpful because they affect the autonomic nervous system. This testing can be ordered online and it's the same testing that my son had done. Tyler is 75% better but has lost too much core strenght to be back to his prepots level. However, if he continues to improve with exercise, my guess is that he will be there in another year.

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I am on florinef and it has improved my BP , I still have dizzy spells still but not constant like they use to be. I still have all the other symptoms I find not being able to take anti inflammatorys for pain the most difficult as the Dr said they can only prescribe co codomol and that gives me severe ibs . Anti histermines seem to be making me feel really groggy in the mornings at the moment too.

However I am grateful I now can do more than I could 12 months ago when I couldn't even stand up , some thing I have to keep reminding myself in moments of frustration !

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I am on Ivabradine (Corlanor) since middle of November. At the beginning of January I felt better than I ever had. I was able to work full-time, and work out on my days off. I still had some minor fatigue.

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