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For several weeks I have been on the brink of falling into the POTShole. Last week I crashed so I have been doing all the things we do when down there and getting a little better. But, the one thing that is nagging me is that I am freezing 24/7. This is the opposite of my normal state. I have been wearing a fleece jacket indoors as well as heavy socks all week and not running the A/C and I'm still cold. I have the wraps you put in the microwave and use those along with blankets. You would think it was the dead of winter instead of in the 80's! My normal temp. is usually 97.5 but a few days ago it was 96.9 and today 95.4. I have had an occasional dip in the past for a short period but this has been going on a week now and I am puzzled. I suspect this accounts for why I am so cold??May give the doctor a call tomorrow but curious if anyone here had any ideas. tired of being cold!

Hi Melissa and welcome to the neighborhood. Don't worry about the times you are not up to posting....it is a very understanding group here, but do know once we get to know you, we worry if you disappear for long periods!! It sounds like you have accomplished a great deal since becoming ill and I applaud you being able to complete your graduation. I know that must have been hard work made even more difficult with your health challenges. What do you plan to get your graduate degree in beginning this fall? Sounds like a good idea to move closer to family. Having a nearby support system can really make the difference in getting through the rough periods and I know your family will be more at ease. It is wonderful they are so supportive and willing and able to jump on the plane and fly out to help you. I too will be interested in hearing how your visit to Vanderbilt goes. Hope they can find something that can help you. It is nice to get to know you and again, welcome!!

I have a neuorologist but after all the initial testing it just doesn't make sense for me to go to him regularly unless needed. Same for my cardiologist. I let my internist help me through all the "stuff" that comes up to sort out which is POTS and which is not and then see the specialist as needed. I think the best doctor to have is someone who is compassionate and willing to listen and do their own research to learn more about POTS. Also someone who is easy to reach when you need them. I also like that my internist has a very good nurse who is responsive and knows if I call it is usually something important and gets me in quickly. Sometimes these individuals are hard to find!

Katherine, glad you are being realistic about what you can do during this time of readjustment. You strike me as someone who has a good sense of balance between work concerns and health management. Kudos for that! I hope the symptoms go back into remission once you are back on the meds. It is good that there is something out there that works well for controlling many of your symptoms. Take care.

Morgan, just to add that I am not a fainter either, however, I become near syncope when I am upright too long. I just get enough notice to sit down. Also, my bp doesn't drop dramatically on standing as most people here but I do have dx of POTS because my HR soars and all the other wonderful symptoms. Like you, I think this is a wonderful site for all who can benefit from it and the experiences shared have helped me personally.

I am sorry you are going through this very difficult time and to some degree we all pass through these relationship difficulties when learning to adapt our lives. Our illness is not something we asked for and not something our families asked for either. In my case I married the year I became ill so we have not had any illusions although we probably did have expectations things would improve more than they have. My husband is pretty independent and we make sure that he has a life doing things he loves without feeling guilty that he needs to be with me and forego what he enjoys. This is so hard for me to sit back and watch him enjoying things but I get that it is important to our marriage. We also have time when it is just the 2 of us and really enjoy being together. As for separating, it does seem a drastic step but do you feel that you have tried everything else? My doctors have all told me from the beginning and I have learned first hand that isolation can be the worst thing. It is too easy to pull away from others, especially if you are someone who is not used to asking others for help. I would hope that if you decide to move out you wouldn't do it unless you have built a really strong support system to see you through. You may find relief from one kind of stress only to realize a new type of stress. I think the idea of getting away on a regular basis is a good idea. My husband travels a great deal and during those times I try to look at it as a positive thing for both of us. Just being away can help give a fresh perspective. whenever I feel like a burden or that I am not contributing what I would like, I just ask myself this one question, "if it was my husband or child who became injured or sick long term, would I stay and do my best?" Also, remember that you are teaching your sons about compassion, courage, vulnerablilty and a lot more....more than you realize at this moment. good luck to you as you work through this difficult time. remember to take care of yourself in the process.

Katherine, if we listen, our bodies do tell us what they want to function better but I am glad you were able to go off for a longer period of time. I am just wondering, have you tried going off just 1 med at a time to see how you do s. both at the same time? I am sure you had a reason for this but just curious. Feel better soon!

Hey, Emily, I think you are improving even if it doesn't feel that way....know how I know this??? You are writing and writing and then apologizing for writing too much...this made me laugh cuz it is SO like you to apologize over and over...of course we love this about you!! Now when you start talking about needing to go to get some delicious food item, we will KNOW you are truly getting to the final recovery stage (just trying to make you laugh a little). I am truly sorry this is taking so long for you but glad to hear that you have a good support team in addition to your mom and that they come to the house. PT can be really taxing so I am sure this is a good part of your fatigue don't you think? Walking to the mailbox was the first milestone I achieved after the onset of POTS and being homebound so I can remember how wonderful it can be to get out and see nature at its best in the spring. I am so glad you are trying to do this as I know it is good for your spirit as well as physical activity. See, you ARE doing better. This is a good step forward! Thanks for remembering about my procedure as well. I am fine in that regard now. My GI system shut down for 4 days at first and then went to fast forward for another week but after that it is back to "normal". As for the A/C dilemma, I think I may be going crazy. We use a purifier but after reading the CR we turn off the ozone function and it still helps. Things were better until Sunday when I started having same issues and last night went to my in laws to sleep (hubby out of town). I thought maybe it was the A/C again but as today has progressed I think I am teetering on the POTShole....teetering for days actually but it is TOO crowded down there, so I am trying to manage above ground. It has been a recliner day for me as well! Emily, it is so good of you to write and share how you are doing. I know this takes a lot out of you. Just know we underestand you are doing what you need to be doing right now to get better. Pop in when you are ready!

Katherine, I can't say if it is POTS or not but I definitely canNOT have a salon shampoo my hair. I wash it before going in and then get it cut. When the hairdresser asked why, I told her I have a pinched nerve in my neck! It is so much easier than trying to explain POTS and she could understand why more easily. If I put my head in a tilted back position I will get POTSY in a hurry, not to mention neck pain. I have to be careful in yoga as well.

What a terrible thing to do...3 weeks, is he nuts???! I had a wonderful gp in the beginning but she finally felt I would be best served with an internist who was more familiar with the drugs prescribed. Sounds like your doctor feels the same way. My gp said she was still available if needed. I now have a very good internist who is easy to reach including email and willing to run coordination with the others. Perhaps the endo. you are going to see could do the same for you?? Sounds like you have a WONDERFUL husband!! Now do what he says and REST. Feel better soon.

I am 51 and came down with POTS when I was in perimenopause and once I crossed through those years, I began to feel better. Not normal, just better. Is the timing of onset of POTS and menopause coincidence or not in my case, I don't know. I do know I can see marginal improvement, year over year for the last 5 years but still consider myself POTS-normal.

Gena, thanks for the update. Stacey, I hope this will be the beginning of a long stretch out of the valley. Miss you!

So sorry to hear of your difficulties. I wanted to add that for me, nausea is often something I get when I am pushing too hard. Could this be a possibility for you as well? If I increase my rest time, it will generally go away. In the beginning of POTS I had nausea 24/7, not sure if it was the constant tachy as suggested in an earlier post or just that EVERY little movement constituted overdoing at that time. I have never found any med that I could take to relieve the nausea but I do use peppermint oil, a few drops on a tissue and inhale -- especially when the nausea comes while in the car. good luck to you and I hope you feel better soon.

Linda, looks like you have gotten really good advice. I just wanted to say that while I am very exercise intolerant, I can ride the stationary bike -- just be sure you get a recumbent bike where you legs are out in front of you and don't hang down. If you haven't been doing any exercise I would suggest starting at 3 minutes. This is what my PT started me on and then as you are ready you can add minutes. It may not seem like much but starting slow gives your body a chance to get used to the change. Aquatic therapy sounds great and fun! good luck with managing diabetes and starting an exercise plan.

Hi April, Like Merrill, I kept looking at the first site trying to find little Gabby!! btw, you are NOT a moron. Memory fade happens to all new moms and when you add that to Pots brain fog, well, I think you are doing pretty well (LOL) Gabby is a beautiful little girl.

Jenn, what encouraging news. I am SO happy for you! Good luck with the trial and error phase with meds. I hope you find a good match quickly.

BR, WOW, this sounds really painful. sorry you are having so much of a problem. I used to get muscle spasms in the beginning but I don't think they were as bad as you describe. Magnesium seemed to help me. Wish I knew something else to offer, but since I don't, I'll just send along my concern.

Before long, we are going to need to take attendance down there in the POTS hole. I am afraid my memory is having a hard time keeping up with everyone above and below the surface (LOL). I going to add gps tracking of who's in/out of the potshole to the suggestion box in addition to the community calendar for when everyone is going in for major testing. btw, DO we have a suggestion box??? sorry, got carried away and off topic...my apologies. EM, one time in the ER the doctor called my internist and he gave the same reply your cardio. gave -- ask the patient, she knows more than all of us -- and it did make me smile to. Amazing how a little validation goes a loong way with us! Glad you had a good experience with the new doctor and think how much he learned from you yesterday. I hope your viral bug passes soon and I also hope that Tearose is making enough cookies to share!

I just wanted to add my 2 cents worth regarding Florinef. I did not do well on it but I know it helps many people. The best thing I think is that you start low and work your way up to the proper dosage for you. I read that one of the POTS specialist said you should start on no more that 1/2 of a pill for 2 weeks to see how you tolerate and then ramp up slowly. btw, when I was on Florinef I was extremely wired 24/7. I stayed with it for over 2 years and when I finally went off it, I was amazed at how calm I felt. I understand about being scared to try to meds but sometimes they really can help improve symptoms.

good luck with this new doctor. sounds very promising!

Ernie, I am very angry and sad on your behalf. You did everything RIGHT and they did everything wrong. I applaud you for standing up for yourself and refusing the physchiatrist consult. Unfortunately, your record probably still shows that you needed one and refused it. I would request a copy of your records. I am in agreement with Tearose that I would probably write to the administrator to describe the treatment you received and I would enclose perhaps the medical summary report from NIH or Dr. Grubb about your physical condition. I know this will require precious energy on your behalf but if you don't take some action, I fear that what they have put in your records could become a problem for you down the line. Also, I don't believe the doctors should be allowed to get away with this without anyone challenging them in writing. It would be great if your regular physician would add a written note about your condition as well. I know you have been through so much and this latest disappointment must be terribly hard to deal with but do not let them win, Ernie. You have well respected doctors here in the US who have tested you thoroughly and know that it is not in your head. AND, you have all of us here to testify that you are NOT crazy!! Rest well and get your strength back.

Merrill, sorry to hear that you are still down under. I didn't think I had problems with bb until I went off of them after 2.5 years. I was surprised that some, not all, of my fatigue lifted after stopping them. It was really encouraging. I am sure you have already tried several bb so I am not sure what it left for you to try but hopefully something. We want you to feel "normal" again....I am trying really, really hard to remember exactly what that felt like...it has been such a loong time ago (LOL). Just remember that much of what you are feeling is not a reflection of you not being able to manage -- I think sometimes we are too hard on ourselves, so just be sure you are NOT--it is the MEDS. As for everyone else, I think we may need to dig another hole soon as it appears to be getting very crowded down there. At the moment I am still on the surface so let me know what you would like in your care packages and I will send it down. Do take care, all.

Corina, it is so good to hear when one of us finds a really good doctor and I hope that this specialist will be able to find a course of treatment that might move your progress along. I fully understand about not getting our hopes too high. I made that mistake before going to the Mayo Clinic and it was hard to get past the disappointment but you are very realistic. I also think that having a specialist in dysautonomia take an interest in your case is a positve sign so we will mark the community calendar for June 1. I too notice that you are sounding stronger these days and what a compassionate thing to do reaching out to Ernie. You are a good person to know!!

EM, I am sorry you are in the valley and worse had to see a new doctor. Hope it went ok. I get a facial sensation that only occurs on my left cheek but I don't know that I would describe it exactly as you have. But, like Morgan I do get the burning sensation in my feet. Wish I could help more. Take care of yourself and I hope the new doctor visit wasn't too frustrating.

So glad to hear that your daughter won't have to have surgery. I do find that I have more allergies since becoming ill with POTS.