Hope

Gluten-free is really not that hard once you get the hang of it. I have never been tested for Celiac because I haven't been well enough to do the scope, but I attribute my digestive tract going back to normal to my Gluten-free and low dairy diet. Also when I was in that state of constant diarrhea, the iron supplements just added to it. Now that my digestive tract is good, I can tolerate iron in my vitamin more often, but not daily yet.

I too am always afraid to try new medicine, so I go with 1/2 a pill first to see how I will react. I figure if I am going to react to it, it won't be as bad as taking the whole thing I take Midodrine, 2.5 mg tabs. I am prescribed 3 a day, but I take 1/2 of one tab in the morning and if I need it later another half. If I take a whole one, I will get chest pain. And I don't think it's my heart, I get a spot that swells like a knot and when I take the whole tablet it aggravates that spot.

Nice article. Thanks for posting it

Sorry to hear you have been so ill! I've actually felt better this spring than last spring so far. I live in a cooler climate though and cooler weather is kind to me. We are suppose to be in the 70's next week. We shall see if my luck holds out. I hope you are on the upswing soon!

LOL! Good for you Issie!

I had a hard time with this last spring. I had allergy testing and they gave me an inhaler and meds for the nebulizer, but neither worked. What helped the most is heating a rice pack and putting it on the lung area alternating front and back, warm tea, and a warm bath. I also make sure I take my vitamin C in the morning and at night ( I had read that somewhere taking vitamin C before exercising can help with breathing issues, so I tried it since my everyday activities are like exercising to me!), and at one point I had gone to my primary doctor and he gave me an antibiotic and told me I could have a sinus infection. I guess the bacteria can give the lining of your lungs inflammation. I would not have connected the two because I didn't feel like I had a sinus infection, although I was having a lot of drainage. That helped with a tough bout of the struggle to breath. Not sure if that helps at all, but that's been my experience. I wish you well!

BelleMia mentioned maybe herbs or food, definitely cinnamon will drop my blood pressure.

Well, that's a lot of good feed back =) Thank you ladies!

Does anybody feel worse after using hair color? I use Natural Instincts because there are suppose to be less chemicals, but I seem to feel dizzy, vibrating, and more fatigued after I color my hair! I don't like to be gray, and my husband really hates my gray but I don't feel like it's worth it to increase my symptoms just to get rid of the gray. Just wondered if anybody else encountered this.

Well, I have found out there is a boy soon to move in next door to us that is close in age to him, and he seems very polite to boot! He actually reached over the gate to shake my son's hand when they met! I will keep praying that this is an answer to my prayers!

My husband found a gluten-free bakery that he is often nearby for work. They have the best gluten free bread yet, although I still prefer it toasted or grilled in a pan. You might try finding a bakery that does gluten free. Also I make a sort of sweet bread with Pamela's gluten-free baking mix.

Thanks Kris, yes I would be worried about building a tolerance to it. I hope you have a turn for the better soon!

I take Midodrine and Metoprolol. I always monitor my blood pressure and heart rate before I take either because some days I need both, some days I only need a 1/2 dose and the more I am recovering, some days I don't need either at all. Interestingly, even when my blood pressure and heart rate are under control, I can still have an array of symptoms that do along with POTS.

I also feel the EBV started my problems. I have never been the same since I had Mono when I was 14 or 15. Are you taking that Valtrex everyday? I take the generic of Valtrex for my cold sores and often wondered and even mentioned to the doctors about possible taking them steadily because even though they make me sleepy, after I have taken them for a few days I feel improvement over all. I feel stronger for a short time. My neurologist had given me another long-term antiviral to try (amantadine), but it is a stimulant and my cardiologist wants to keep my heart rate down so he told me not to take them. Now the Valtrex does not raise my hear rate. PLEASE, let me know if you are taking these daily and I will bring it to my doctor again.

I haven't heard it called "Earthing" but I've read about the method in different health recovery books for Chronic Fatigue and Adrenal Fatigue. They say to spend as much time as possible outside, and if you can't get outside they go as far as saying to watch nature videos and listen to nature sound CD's etc. Sometimes I feel better being outside, and sometimes I feel worse depending on allergies. When I was a kid, my family's vacations were usually spent camping on our relatives land up north, with lot's of woods and fields to explore. I always felt better and more relaxed.

It seems like people get good treatment from that Cleveland Clinic. I wish I was closer to it! You are fortunate to be diagnosed so young in life and can forge ahead getting help =) I wish you well!

Thanks for all your input. I really appreciate it! I will just keep forging ahead. Today I was able to bring him down to the park to climb trees (while I watched of course) and have a picnic. Then I had to go back to bed for most of the day to get enough energy to take him to book club this evening which turned out that I was able to do! He saw me taking my blood pressure before we went and he let out a big sigh, I said "What was that for?" He said, "Usually when you take your blood pressure before we leave it means we can't go!" And those days I really do feel bad, but today it was nice to tell him we could go.

Thank you! I didn't even know that histamines were released during dental surgery. That's very interesting!

You can get hearing loss from Meniere's. I have some, but not bad. What else helps with the dizziness and the draining is the ear exercises that both the ENT gave me and my Neurologist. Ask your doctor about those as I obviously cannot give medical advice here so I won't go into how to do them. I was also given some specific vitamins that I used to take that promote blood flow in the ear and those did also seem offer some relief, but not enough relief that I would keep taking them. I wish you well!

Yes, I have Meniere's also. I was diagnosed in the 90's after a severe bout of vertigo. My ENT at that time put me on a very low salt and low sugar diet. About 4 years ago they did a test, I believe it was an ENG. They have you watch movement through some type of equipment and they look at your eye movement patterns. Then they lay you back and blow air into your ears. The first part just made me nauseous, they air in the ears put me into vertigo and that is what they are trying to achieve. Now that I have POTS it's hard to find the balance with the amount of salt I need to keep my low blood pressure up and to keep my head from spinning! More recently, I have seen a Neurologist for my POTS and Meniere's. He did a MRI to rule out a tumor, etc... So I have the BPP type of Vertigo. I get the ringing. It does get worse at night, but my house is so noisy 24/7 that I don't hear it long before I sleep I also get that "fullness" feeling they talk about in my left ear. My triggers are, allergies, salt, sugar, stress, and hormones. I find it difficult to drive very far or often between my POTS and Meniere's, and when I do I try to stay on the back roads as the intersections and busy traffic throw off my vision and balance. My ENT said that "Old Viruses" usually cause the damage. Probably the same old viruses that cause my CFS and POTS.

I don't have any answers for you, but I have bladder problems that come and go. I have the waking with a jerk, and gasping, heart racing. The waking etc.. used to happen a lot more than it does now. I think the metoprolol I'm on helps with that for some reason. It only happens once in a while now. Before, it was multiple times a night, usually in the first part of the night. After a few hours of interrupted sleep, it would go away until the next night. The bladder problems are definitely worse with my hormonal changes, as all my POTS symptoms, but not exclusive to it. Where did you get your diagnosis of dysautonomia if you don't mind my asking? I have been diagnosed with "POTS with and underlying cause" and nobody can seem to figure out the cause, and none of my doctors speak of dysautonomia even though I have a whole list of symptoms that can be caused by a damaged autonomic nervous system.

Thanks! I'm not on here regularly, I miss stuff. I check it out.

I keep rescheduling my appointment to get my teeth out. The first time when they were going to knock me out, I panicked, my fingers were turning purple and I couldn't get myself to lay down on the chair. The second time I had a different issue not POTS related, today I was suppose to go in first thing but my heart rate is 148 and all I have done is take a shower. If I go in and get the epi, it's going to go up even further. So I cancelled once again. When I take things like Xanax, or Ativan it drops my blood pressure too low and I can't function. Same with Benadryl. I HAVE to get these things out!

Well, it's thought that POTS is often triggered by a virus so it makes sense that vaccines carrying viruses could bring it on. I am very against vaccines for a few reason's (even though I've had many), this just gives me another reason to object to them.

My brother's friend had Hodgkin's Lymphoma when he was in his early twenties and was cured. Now he is old and gray and still cancer free. I hope you don't have to go through the battle of cancer though. I will pray for you.