Gena

I get those same type of headaches... but knock on wood, I haven't had them in probably 4-6 weeks. I can't remember if it makes my head hurt worse on the in breath or the out breath. But it's definitely one of those! I hate those types of headaches and sometimes mine last for days or even a week at a time. Hang in there though, eventually it passes! I would say just don't breath and see if that helps, but I don't think that's a smart idea!! Gena

Your niece is definitely in my prayers. She sounds like such an angel. I hope angels are watching over her as well. Keep us posted. Hugs Gena

I am so sorry you are going through such a bad time. I know when you're in such a POTs canyon that it really seems hopeless. But it isn't hopeless, I promise. I am glad you have a PCP that at least cares enough to research and consult with others on your condition. As far as the type 2 diabetes goes, are you working with a nutritionist? Are you eating a high protein and low to moderate glycemic diet? Most type 2 diabetes can be controlled or even cured by eating properly. Well I hope you don't have get on insulin. Maybe an endo or a nutritionist can help you get it under control. I am sending you a rainbow down into the canyon to give you some rays of hope! HUGS, Gena

Thought you might be interested in this link about the toxicity of mattresses. http://www.chem-tox.com/guest/guestbook.html Pretty scary testimonies! Of course not everyone is so sensitive or has problems, but I am definitely one of those people who are sensitive to all chemicals. Hope you do okay with the mattress. gena

I keep saying I'm going to buy some. Where did you order yours from? I'd like to buy organic ones if possible. I need these for the fiber and the hydration factors. I can't eat flax seeds b/c I'm allergic to them, so I think chia seeds will be a great substitute with even more benefits. Gena

My cholesterol is on the low side, but my HDL/LDL ratios are good. Taking flax seed oil or fish oil (omega 3s) for about 90 days along with a high fiber diet and exercise are 3 great ways to lower cholesterol. Eating more vegetable protein and less animal protein can help too, depending on your current intake of animal protein. Cholesterol comes from animal and dairy, but is also made by the body, so you could have some hereditary cholesterol factoring in. Many people have good success by incorporating the first three things I mentioned above into their diet and lifestyle. You can normally see results in 3 - 6 months. Best wishes, Gena

I did not have any chest pain with Inderal and it seed to help my PACs a lot. However I only took a very tiny dose, 5 mg once a day, before bed. Initially I tried 10mg twice a day, but it lowered my BP too much. But even at the higher dose I did not have chest pain. Did you have chest pain prior to taking the Inderal or is this a new symptom? I would ask your cardio about it. It may be that your body needs time to adjust to the med or you may need to try a lower dose. best wishes, gena

Welcome to the board! I would definitley review the link provided to you on "what helps" which offers a lot of advice. I might add that the best type of salt to use is Celtic Sea Salt. It is filled with trace minerals that your body needs, unlike processed table salt, which can actually deplete your body of minerals. I add this salt to a bottle of water and drink it each morning before I get out of bed. You should also make sure your electrolytes are balanced by getting potassium, magnesium, etc. and you can do this by drinking an electryolyte fluid such as Gatorade. Best wishes, Gena

HI Tea, Boy did I miss you. However, I knew you were off doing good things and tackling the world! I just hope the world didn't tackle you back too much! I know it's disappointing to realize that a full-time job might be a bit much to handle, but you gave it the old college try and that's what matters most. I think you're amazing for doing all of the wonderful things to improve your body, your brain, emotional well-being and self-esteem. You should be very proud of yourself. Well, I want to chit chat some more, but it's getting late here, so I'll sign off for now and catch up with you later. In the mean time I'm sending you some scrumptious cookies and soothing tea. (The cookies are healthy of course, but taste absolutely sinful! Ha! ) Hugs, Gena

I have not heard of this, but I do get massages regularly and my therapist often uses accupressure during the massage. gena

HI Susan, Welcome! I actually posted something on this topic in the last couple of months. I am ordering some chia seeds this week. And yes I've read tons of research that really are supposed to help with maintaining hydration and balancing electrolytes. Chia is a good source of protein, omega-3, B vitamins and minerals. The Aztecs and Mayans used to eat it to sustain them on long hikes/journeys. They are perfectly safe and can be used in a variety of ways. I've pasted an excerpt below from material I found online... "Chia seed is a complete source of dietary protein, providing all the essential amino acids. Compared to other seeds and grains, chia seed provides the highest source of protein, between 19 to 23 percent protein by weight. One of the unique qualities of the chia seed is its ability to absorb more than nine times its volume in water or other liquid. This ability can prolong hydration and retain electrolytes in body fluids, especially during exertion or exercise. Normal fluid retention ensures electrolyte dispersion across cell membranes, maintains fluid balances, and aids normal cellular function. The gel-forming property of chia seed tends to slow digestion and sustain balanced blood sugar levels, which can be helpful in preventing or controlling diabetes. Whole, water-soaked chia seeds can be easily digested and absorbed. This results in rapid transport of chia nutrients to the tissues for use by the cells. Chia also facilitates the growth and regeneration of tissue during pregnancy and lactation, and aids the regeneration of muscles for conditioning athletes and bodybuilders. For the dieter, this means feeling full with no more peaks and valleys in blood sugar levels." I'll let you know if I like them and how my body responds! Gena

Did I miss a post somewhere that tells everyone about the new "Chit Chat" forum area? I know someone had taken a poll as to whether we wanted a separate area for this, but I didn't realize it had actually happened! I didn't see it mentioned on the "how to use this forum" area either, or maybe I just missed it. The only way I found out was that I started seeing topics that had been "moved". And then I realized in the little drop down box htat takes you to the dysautonomia discussion forum that it now has a selection in there for chit chat area. Thank goodness I found it. I guess I've been missing out on a lot of posts! I was curious if this has been officially announced in this forum and updated in the how to section? Like I said, maybe it has, and i just did not see it. Total brain fog?? Thanks, Gena

When I first came down with POTs I'd wake up with similar experiences and then the shaking would begin. I think most of us refer to these as adrenaline rushes. My whole body shakes and my teeth chatter but I'm not cold. Eventually my heart goes back into rhythm, but these episodes can really wipe you out! I would either ask for a sleep study so they can monitor heart rate and BP, or do like Briar Rose suggested and get a holter monitor so they can record your HR for at least 24 hours.. You can ask to keep one for a week or more as well if necessary. Glad you found the board...Welcome! gena

Jessica, I am glad to see you post but not under these circumstances!! I went through a period last week where I was getting arrhythmias for several days and they would last non stop for hours. That had never happened to me before. I have flutters in the past, but not like this. My EKG showed PACs about every 3rd beat. My cardio at Mayo said stress, lack of sleep, an allergic reaction, an illness, virutally anything can cause these in POTs patients b/c our systems are so sensitive. (I was stressed and not sleeping due to work) I have never heard of the bucket of ice water cure....that sounds almost unbearable to me! I have tried holding my breath and/or bearing down and that seems to make it worse. Almost anything heavy that I pick up can set off my heart into a fast rate or off beat, but it normally goes back to rhythm within about 10-20 seconds. Well anyway the other day, I found the oddest cure for arrhythmias! I will make a separate post about this later, but in a nutshell, I read in the news about reasearch that was done on patients with arrythmias and that those that listened to harp music (I think it was for about 15-20 minutes) had their hearts go back to normal rhythms. So I tested this three times during the last week when I had odd rhythms. I listened to harp music off the internet (I didn't have any harp CDs lying around! ). Each time I listened for about 15 minutes and my heart went back to normal and stayed that way the rest of the day! It was truly amazing. This is one of the links where you can listen to sample harp songs via MP3 format. http://www.heavenlyharpist.com/harp-cd.htm Hopefully this is a passing phase for you, as my cardio said it was most likely a phase for me too. Like you, I was very scared at first, but he reassured me that he was not concerned unless it continued every day for extended period of time for more than a week. Mine have almost gone away entirely, except I still feel them a little after eating a meal. Sorry for the long post, but I hope this helps. If it continues I would see a doc of course, but it sounds like you just REALLY need some SLEEP and so does your little one!!! Hugs, Gena

Pre-pots I was fine speaking in front of big groups, now I avoid it if at all possible...and I work in public reations of all things!! Since having POTS, I have anxiety that I've never experienced; I get tachycardia, sweaty and nauseated.

I prefer holistic practioners because they look at the whole picture (nutrition, fitness, emotional and mental states, lifestyle, etc.) in order to treat the whole person. However, as you said they can be costly. AND, just like MDs, there are good ones and there are bad ones out there, so you have to be careful. If like this particular practitioner, then you may want to let him know your financial situation, and perhaps he can work something out with you. Normally the first visit with a holistic MD is fairly high, but then subsequent visits should be much less. Most of the ones I know charge anywhere from $50 - $80 for follow up visits (not including any testing of course). Good luck! Gena

Bama Girl, You have very low BP (mine also gets nearly that low, but not on a daily basis). if you take a BB I would definitley talk to your doctor about taking a small dose (I take a quarter of a 20 mg tablet of Inderal, i.e., 5 mg) and ask him/her about using it conjunction with something that is going to raise your BP such as Midodrine or Florinef. Just my personal opinion, but I don't know that you could tolerate a BB by itself without some other counter measure for raising your BP. Have you tried beta blockers, florinef or any of these meds before? Hope you find something that helps soon. Hugs Gena

Stacey, I am so sorry to hear that about your father-in-law. I'll definitely keep him in my prayers that the surgery is a success and that he comes through with flying colors. Keep us posted on your upcoming doctors appts. I hope you find some relief / solutions to some of your symptoms. Hugs Gena

I am so glad to hear your doing well. Maybe we'll get to meet up for lunch like we talked about one day, now that you are feeling better. Just curious as to who did implanted your pacemaker...was it a Florida doc or did you go out of state? I'm just so happy that it's working so wonderfully for you. Gena

HI Jacquie, So sorry you are under the weather. YES, any type of illness / infection can greatly increase our symptoms including palpatations. Just make sure you are drinking extra fluids and electrolytes. I hope you feel better soon. Gena

I would get rid of all the heart related symptoms (tachycardia, bradycardia and arrhythmias). That is what I have the most problems with. Well, and then there's those darn adrenaline rushes that I get sometimes. I would want those to go away too! Gena

Vanessa, I am so sorry you are feeling so miserable. You may want to have your potassium/electrolyte levels checked again just to see how they look now. As CyberPixie mentioned, it's important to keep them all balanced and if you take too much of one electrolyte, like potassium, you can throw off the others. I noticed in your reply on my topic on PACs that you have them too but that you were worried about BB making your BP too low. Well, I tried toprol xl several months ago and it made my HR and BP way too low. HOWEVER, I recently started Inderal (propalanol sp?). Doc prescribed 20 mg 2x day for me which was way too much. I finally figured out a good dosage. If I take just one half of a 20 mg at night a few hours before bed, it seems to work and fend off most of the PACS without lowering my BP too much. So there is hope that you can find something that works for you. My cardio said I can use the Inderal for those bad phases and wean myself off whenever I feel better. At this low dosage it would be easy to come off it and I would be able to use it intermittently whenever I really needed it. Hugs, Gena

I often get bad chest pain, only on my left side, sometimes radiating into my arm. I know it's frightening, b/c you never quite know whether to ignore it or have it checked out by the doctor. I have MVP which can contribute to the chest pain and sometimes PACs show up on my EKG, which can also increase chest pain. If you have an echocardiogram and your heart is structually okay, then your chest pain is most likely benign and just a yucky part of dysautonomia. Having erratic pulse rates are also standard for this illness! Hang in there. Gena

Morgan, I'm praying they have a cancellation soon and that you can find transportation to the office on short notice. Heck, I'll pay the cab fare for you to get there! I wish you could find a sweet understanding soul that worked at the office and explain your situation so they would get you in. So sorry to hear this. Please don't break anything you might regret later! Maybe hubs could just buy you a punching bag? P.S. I wrote you a short note in my thread about PACs. Thanks. Gena

Thank you all for your words of comfort. It's good to know I'm not alone and that these are not life threatening... And thanks a million Morgan for that wonderful explanation and reassurance. I can always count on you when it comes to matters of the heart! Hugs, Gena