geneva

Linda, this is truly wonderful news. Congratualations on winning the doctor lottery!

Beverly, thanks so much for checking in with us -- you know what worriers we are on this site!! It is wonderful that Nicole has been able to go to VT and down this natural path for healing. The arrangements sound like they are ideal for her with someone caring for her at both ends. Plus, I imagine she feels a degree of her old independence just going away from home and seeking care on her own. Losing our independence is one of the toughest things to cope with in my opinion so I am happy to hear she has taken this step. I also think that the more we can do for our bodies naturally, the better. Sounds like you have been using her time away in a positive way for yourself. A cooking holiday is a great idea!! I know you have health issues yourself so I hope this time allows you to recharge and be stronger. all the best to you and Nicole. geneva

Amy, I too am concerned how Nicole and her mom are doing. A month or so ago I started a where-are-you post and we never heard a word. I am worried but Beverly if you are out there know that we are all thinking of you and hoping that Nicole is improving day to day. We miss hearing from you!

Katherine, I cannot view the pictures. I only get the red X which doesn't respond when I click on it. Not sure what the problem is but I have had it before. I am sure it is ME!

Michele, when I first became ill, I remember the feelings you describe so well and I am so sorry that you are down in the valley (as someone so aptly said). Leaving the house always made me worse and I would be near collapse wherever I went so of course you stop wanting to leave the house. It was a long time before I was able to learn what the single biggest trigger for why I felt so sick away from home was....overstimulation. My brain would over react to any stimulation -- the light outside, the dark, traffic motion and noises, flourescent lighting in stores, and busy environments period. With the help of my doctor who wanted me to try getting out more, I agreed to try a very small dose of Ativan 45 minutes before going out in the world. It worked for me (although benzos are highly controversial...see old posts for more discussion) What Ativan did was allow me to go to the grocery store on my own, attend church, go to friends house and 3 years after onset, take yoga classes. I still spend the majority of my time at home but knowing I can get out really helps. I share my experiences because I hope that you will find improvement in time. For me, 4 years was the beginning of noticeable improvement. Believing change will come is important...don't give up Michelle! I agree with Katherine that 2 years is not such a long time in the course of POTS, although it sure seems that way. When I have those moments when I worry about what I won't be able to do somewhere down the road, I try to remember that before POTS, I would never have imagined THIS turn I have taken, so maybe another dramatic turn for the BETTER is still out there for me. I hope that it will be for you as well.

Morgan, Jake had a lot of people praying for him these last few days....seems like someone was listening. I am so relieved for your family and I hope that you can get some much needed relaxation. All the best to Jake!

I have the type of POTS where any stimulation causes me my body to dump adrenaline. Attending a baseball game with lots of noise coming from multiple directions and visual stimulation would certainly trigger a similar reaction. My bp tends to go up along with my hr in these instances and the longer I am exposed the more severe my symptoms become. I don't know if this might be true for you but just wanted to share my experiences. I take a very small dose of Ativan ahead of an event. I take 1/2 (of a .5mg) tablet before going to church for example because the singing and crowd are too much for my brain to process and then here comes the autonomic storm. I find that following an adrenaline event I will crash and feel awful the next morning. Hope that is not true for you! Best thing I have found is extra rest. Have you been diagnosed with dysautonomia? I wasn't sure from your message. forgive me if you have answered previously. good luck.

Corina, so nice of you to get in touch with Ernie. I am sure she appreciated your support. I had been thinking about her as well and it is good to hear that she is receiving good care, although those paralyzing periods sound so scary. But, I know she is very brave and if this can help the doctors help her, surely it will be worth it. please send my regards and hopes for more becoming known about her condition.

Roselover, Welcome to the forum. I am glad you have been reading some of the past posts because it can be so uplifting to find that there are others out here who can relate to the symptoms you have (right?). While each case is different per individual, we have many similarities. I don't know of any doctors on the west coast. Seems most of the specialists are further east. Perhaps others here will have some advice or experience they can share. In the beginning I took Atenolol and Florinef too and the combination aggravated my bp terribly, causing it to go all over the map. The atenolol worked for the fast HR but caused my bp to drop too low so the doctor increased the florinef but then my bp in the evenings went too high! I felt like the meds were creating more problems for me and I was taking too much of a dose just to counteract the other med....drove me nuts. After 2.5 years I went off them, at a well controlled rate. Everyone has different experiences with beta blockers and florinef. I hope you can find something that works to improve your symptoms. again, welcome!

This is one of those times where you wish so much that there is something you can say or do to make a situation better, but can't, other than lending support and offering prayers. I have had Morgan and Jake in my thoughts all day and will continue to do so.

Morgan, it is impossible to find the right words to show how much compassion I am feeling for you and especailly Jake at this time. I will keep you both in my prayers and hope that you will find the strength you need in the upcoming weeks.

I realized I missed your first post so let me just say welcome to the forum and also welcome to Texas. I live near Austin. Are you perhaps in Killeen? My heart goes out to you trying to manage military duties with POTS. Are you still able to function well enough to go in every day? Just wondering if you are recently diagnosed? It is good that you have what sounds like a supportive husband although a chronic illness can be difficult for family members to adjust to. Yes, the term POTS has generated a few strange looks but now I like to say dysautonomia, especially if I am at the ER or working with doctors because most of the funny looks I have gotten have come from doctors themselves! Hope you have a good doctor to work with you. all the best.

Morgan, your son is truly a trooper and I know all of you are dealing with so much waiting to get the results but smart to go ahead and get the appointment with the specialist. You must of pushed hard (good for you!) to get in to a specialist so quickly. Lack of patience is a good thing when it comes to dealing with incompetence and I think you are so right to fire someone who can't read a simple report for 3 weeks...just incredible. thanks for keeping us posted.

Morgan, I am so hopeful that you and your family will have good news today.

Kayrn, it is nice to have someone with your training on the forum. Welcome and thanks for sharing! Amy, I agree about the massage therapist. I do have a really good person (thankfully). She even makes house calls when I am having especially bad pain (like this last Monday when I woke with severe pain in my shoulder). I have been with her for 2 years and she is great. She stretches the neck area and I also have been doing yoga stretches for a year now. The only thing is that if I miss going regularly to massage, I have really bad problems with my neck and shoulders. No amount of stretching on my own accomplishes the same thing. I have a real appreciation for massage therapists! I think what astonished me most was that my doctor actually gave me a name for the problem I have had off and on since POTS 4+ years. I have described the scalp pain before and just gotten funny looks. Gena, your description is similar to my pain. I get the scalp tenderness and pain and cannot even run my fingers in my hair without pain. Just to touch that area of my head is really painful. This sensation has baffled me for years as I had not read anything to explain it. In the last 6 weeks I have started having the throbbing pain at the base of my skull at the SAME time as the scalp tenderness and pain and that is when I figured out there was probably a connection. I also think I have been having more occurences of this pain because I have been trying to push myself physically in the last 6 weeks. Same old dance...1 step forward, 2 steps back!!!

Emily, thanks for your offer but my friend has online subcription to CR and read the article. I checked the website and the manufacturer is not listed so no help there. I have sent an email to the distributor to see if they have any further information. The information is probably good for anyone who has one of these purifiers. I have turned that function off my unit for now. thanks for sharing this article with me.

Hi Cordelia and welcome to the group. I think we can all relate about not wanting to become our illness but, for me, I have found this to be an extraordinary group of people and NOT just because we share a common illness. I look forward to hearing more from you!

Emily, I just read what you wrote about the ozone dangers....yikes! I don't get consumer report so I will have to see if I can find someone around here who does. I had asked my yoga and massage therapist about the technology as they are very much naturalists and warn me about EVERYthing, but both of them said "no problem" and 1 of them has the same unit I do. Wouldn't you know that after using for ten days we decided to buy the air purifier and I just paid for yesterday!! I can turn the ozone function to off and let only the UVX feature run. Of course, next month they will probably decide UVX is probably harmful too...what's a person to do?????????? I have not have any of the horrible fatigue but then again we are still sleeping in the guest room. Brenda, yes, I do agree about the changing the filters frequently. I liked your explanation about the mold spores sitting around waiting for moisture. Perhaps that would explain why that unit always puts out a smell after a heavy rainfall. BTW, we have 2 separate central a/c systems and the other larger unit never has given us any problems. EM, can you tell me the issue for CR? Is it MArch, April, or MAy? Thanks for the heads up!

Ernie, I am really pleased for you. I hope you have someone to help you with the travel and pack your POTS bag! Take care. I wish you a very positive experience.

Tearose, I was waiting to see your post! I am so glad that you had good news today. The trauma of tests and waiting on results can be so wearing but now it is behind you. As for the heart rate monitor, I don't know what the correct answer is on that one. I don't use everyday -- just when leaving the house, which isn't that often. I, too, feel like I have a good idea where my HR and BP are most of the time but occasionally I can get to 120 HR and it takes becoming symptomatic before I realize something is going on. Did your doctors have an opinion on whether the heart monitor COULD be responsible for your "pearls"? Well, have a nice long nap and order in dinner tonight...don't forget dessert!!

Hayley, this is one of those things that sounds strange to say, but congrats on getting into the hospital! Are you having the full autonomic tests run? Good luck to you and keep us posted on how you do.

Miriam, I am sorry that you are under so much stress and I can fully understand how family can let us down. I am one who believes that you should do what is right for YOU regarding the funeral. Most people will say going will give you closure but only you know if that is true for you. Staying home, pulling out any scrapbooks or just remembering the times that were special to you about your Mom may equally give you the closure you need without the added stress of being around family who appear to have little compassion for the challenges you face. Just take care and give yourself permission to go OR to stay home -- whichever is best for you. please take care.

Friday I saw my doctor and asked him about the throbbing pain I get at the base of my head and the weird tingling (pins-and-needles) in my scalp. I have had chronic neck/shoulder pain since the beginning of POTS and have mentioned these other throbbing and tingling sensations to several doctors in the past but no one offered an opinion. ANYway, my current doctor informs me that I have "occipital neuralgia". He doesn't think it is due to POTS but then again I never had these symptoms before POTS so who knows. The chronic neck/shoulder pain may be a trigger. Rest, heat, and massage were his suggestions which I had instinctively been doing anyway. I post this because the topic of weird head sensations/tinglings has come up before and someone asked me what mine was from but at the time I didn't know. NOW I do so thought I would share with ya!

EM, I think of you not only when you post but also when I make a recipe from your website. I am sorry you have found yourself with these crazy heart things lately but I completely agree that sometimes it just helps to go see the cardio so he/she can tell us everything is still OK. Good for you for going in tomorrow! I hope you have a better week ahead.

Morgan, I am just trying to catch up after days away and I am so sorry that so much is happening to you and your family members. I know this must be especially scary for your son and you are so right to demand that the doctors have the results immediately for all of your sakes. I will pray for a positive outcome.