Nymph

I have had hot flashes, particularly at night, since puberty. Mine are not directly connected to any other symptoms. They are actually less intense and less frequent as an adult. I have only had classic POTS symptoms since age 31, and maybe some related symptoms since age 21... so I have no idea if mine are connected at all.

Let us know if you get any answers!

Hi Sarah,

Yes, that's very interesting about your high serotonin. It makes sense to me that might be an issue.

I did speak with the pharmacist and she thinks that it makes sense for me to try the Neurolink again and see how it goes. She says that regular MDs do not usually test serotonin, and that testing by alternative docs would likely be very expensive. As I had no ill-effects from the supplement before it makes sense to try it for a while and see if there is sustained improvement. After that, I can test my progesterone levels, which is my other prime POTS alleviator due to my good week in my cycle.

Yes, please let's talk about Dopamine and Norepinephrine and Gaba. Neurolink not only increases serotonin, but has GABA and a dopamine precursor - tyrosine, I think? So it's possible that it was also the combo that helped me. However, I just do not know very much about these.

Here's one that I looked at. If anyone can find an article that's more reader-friendly, let me know:

http://www.ncbi.nlm.nih.gov/pubmed/22407614

Interesting! I am a little confused that you said that your numbers are high. There must be a decimal missing in there.

Look up serotonin and blood pressure on ncbi, too. It is highly involved in it's regulation. Makes sense... serotonin is used by all nerves to communicate. Mess up the communication, mess up the function. I should hear from the pharmacist/hormone specialist today and see if she recommends testing.

I actually had an AHA moment about a week ago. I have had POTS for several years, but for a while it was not bothering me very often at all. About a year ago in May I suddenly got way worse and much more frequent. I realized that I had stopped this supplement called Neurolink. Anyway, it has 5-htp in it and I wonder if it was increasing my serotonin. I haev ordered it and will start it again and see what happens.

Interesting. I had not thought of testing my serotonin levels. I guess that if you thought is that my serotonin levels could get too high, if I am producing more rather than blocking reuptake, that could be a problem.

I do not know but I would guess based on my history that I have low circulating serotonin levels. I was depressed much of my life from age 13 to 22 (and some as a younger child), and struggled for periods of time after that for several years. I have never been diagnosed by a psychiatrist, but I would say that dysthymic disorder described me during much of that time. As an adult I am much better and only have very brief periods of the blues, not even long enough to count as depression. However, from what I understand, prolonged depression permanently alters serotonin levels. I could say a lot more about this and the effect it had on me physically at the time (age 21, major depression). Sometimes I wonder if my autonomic system was altered at that point (hypoglycemic symptoms, ulcers) although I did not develop proper POTS until a decade later.

All that to say, I had not thought of testing it but I will call and ask if that's recommended. I have an amazing pharmacist here who specializes in bioidentical hormones and so forth. She would be the one to ask. My doctor told me a log time ago that he thought that supplement was a good idea. I don't think that understood exactly what it was, though, since he compared the ingredients to an energy drink!

I love this thread! It fills me with hope. Keep 'em coming!

Thanks, Sarah. I have had a Sjogren's flare since May, but it is slowly on its way out and I am feeling good most days. POTS is bothering me more in the summer than it was in the spring. The heat I guess. Thanks for asking.

How are you? Still on that new med you were trying? How is it working?

Sarah, thanks for the info on IST. I had not heard of that.

Hi Big Trouble,

I have all the same symptoms as you. My cardiologist said I ahve POTS. However, my hear rate does not spike immediately upon standing. It takes about 10 min to reach that 30 bpm increase. I am by no means an expert at this and even within POTS there seems to be a huge range of variation as to how the body responds. I just wanted to tell you that I have all of those symptoms and I know how horrible that internal feeling is.

Nicole

Yikes! Just listen to your body and remember it's okay to leave early, or even take and air-conditioned break and come back. I find that I can do half and hour to an hour in heat but not extended periods. Stay cool and have fun!

I used to drink it for a time when I lived in CA. It is illegal in NC, where I live now. However, I can still get imported cheeses made with raw milk. I thought it tasted very good! I was drinking it to boost my immunity, however, as I have always gotten sick easily. I did not notice any difference in the rate I got sick. Probiotics, on the other hand, have helped immensely. There is a lot of science as to the benefits of raw milk. However, it does need to be carefully inspected for ill animals and probably should be avoided by the immunocompromised.

You could leave your wet clothes on from the baptism! Failing that, using a cooling scarf helps me. Also, drink loads of ice water. Congratulations and I hope that all goes well.

I'm glad that you found answers and hopeful that this will clear up completely with no permanent damage!

Interesting. I often have troubles during my period, especially when it's heavy. But consistently my worst times are the week after my period. Go figure.

I use a neti pot rinse every day, as I have allergies plus nasal dryness. I also use Afrin once in a while, just for two or three days. Sometimes that's enough to get you through the worst part and then using nasal irrigation (with plenty of salt to counteract the congestion) can keep it down. Good luck!

Yes, it sounds like it would be a good idea to be tested, as Addison's symptoms are extremely similar to POTS, short of a crisis.

One more thought - celiac is also something I would look into, as it can cause many of your symptoms. The initial screening test is just a blood test, too.

It sounds like it may be related to your ear. Hope that it either resolves or you find answers soon!

Hi!

I'm sorry that you're going through this. It can be a long process but I would encourage to keep going as it will eventually improve your life to know what is wrong and recieve the correct treatment. Two things stand out to me - Hashimoto's and early shingles. Hashimoto's, as I'm sure that you know, is autoimmune. Many people with autoimmune diseases also have early shingles, often before their autoimmune symptoms begin. You have also had low white blood cell counts. This makes me think that you may well have another autoimmune condition. Autoimmune diseases often come in pairs and Hashi's is a frequent co-pilot. You may want to consider seeing a rheumatologist. The autoimmune condition I have (Sjogren's), occurs frequently with Hashimoto's and can also cause POTS. And, yes, there are young guys who get it despite everything saying its a disease of middle-aged women. There are also a number of other related autoimmune conditions that can overlap. That's what I would encourage you to do, especially if you don't think that the Lyme treatment is resolving your problem.

But if you're really losing fast, talk to your doctor or ask to see a dietician.

I always struggle with my weight. However, I do not usually lose unless sick or stressed. Just can't gain and am under weight.

Always choose the highest-calorie option, unless it's loaded with sugar. (Sugar has so many bad effects on health that it's not a good strategy even though effective, IMO.)

Drink caloric drinks throughout the day between meals. Milk or nut milks, meal replacement shakes, juices (watch out for too much sugar), and a personal favorite, V8.

Plenty of carbs + fat.

Good luck!

How much weight have you lost, and in what amount of time?

Sorry you're feeling so crummy.

Thanks! Interesting how we all experience the heat thing slightly differently. The mystery continues...

Thanks! I have no idea. I don't think so, though, as it's not really related to tachycardia, and I would think that would happen if I was having an NE spike. I do flush at other times but not necessarily for the hot flashes, and it's my whole body that turns hot. I have to sleep with my bedroom about 65 degrees. It's like reverse menopause or something.

Hi Gjensen. Thanks.

My Sjogren's symptoms are mild dryness (eyes and nose primarily, sometimes mouth) and many different types of joint pain, some entrapment neuropathy (CTS, ulnar nerve), and fatigue.

I also have brain fog and other symptoms that could be attributable to Sjogren's or POTS and I think are mostly POTS.

No, my hot flashes are usually not sweats, although I get those occasionally. I just get really hot. When I was a kid, I would get up in the middle of the night, take off all my pajamas, and blot my whole body with a wet washcloth to cool off. As an adult it's usually enough to get out of bed and put my feet on the cool floor on my way to the bathroom.

Yes, it seems like MCAD is probably the next logical step for me, although I already take an antihistamine daily so I don't know that it's urgent.

My quality of life is decent. I work part time and study part-to-full time. I have almost no social life. I am studying to become a teacher and my greatest concern has to do with progression limiting my ability to do that. I also currently live with my parents and am not at all sure about how I will eventually live independently (again) and support myself. In the last year, my POTS symptoms went from only affecting me for a day or two several times a year, to affecting me roughly half the time. My concern is that will progress more.

If it's not SFN that's causing it progress, what is it? Wouldn't MCAD be fairly stable as long as my "triggers" were stable? That part just does not make sense to me.