janiedelite

Hi! If you go on the Dinet home page there is a list of doctors in your state who diagnose and treat POTS. I hope you can get some answers!

Honestly Erika, I don't know how you do it! Wow, I'm having a tough time here in Oregon where it's been 80. Mdcountrygirl asked if you've ever thought of getting a cooling vest. I just got my cooling vest today (CoolSport)!!! I originally was going to just wear it when I went on outings or for a walk, but as soon as those inserts were cold I put in on and haven't taken it off since 2pm (I got an extra set of inserts so I can change them out). I didn't know how badly the heat was affecting me til I finally got a little cool.

Even when the A/C is running in the car, the sun shining through onto me is still too warm. So many of you guys live in warmer areas of the country. I really don't know how you do it.

I really hope they can provide some answers! Have a good trip.

My mom has carcinoid syndrome and needs a niacin supplement. There is a "No Flush Niacin" available.

I totally understand about wanting to avoid flushing. It wipes me out for days too. I hope you find something that works! As for me, I'm still on the antihistamines and flushing more than ever...

Janie

I've had small red or pale raised bumps on my face, neck, sternum and inner arms for a decade. They come and go. At first, I noticed that stress made it worse. I've also had mild flushing since then that has gotten progressively worse. Recently, I had a really bad flush from my chest up and 2 hours later had those small itchy, burning red bumps from the chest up. I showed them to my mom and she thinks they look like heat rash. Makes sense since when I flush, my skin is so hot last time I had to put ice packs all over my upper body and head. My mom has carcinoid syndrome and flushes regularly like this, but she doesn't get the rash. Her flushes last for minutes, though, where mine can last for hours. Wierd, that's all I have to say.

Just prayed for you both. So sorry about your ear infection too! Janie

But he apologized and said that he'd one day love to present my case at some of the teaching conferences. Not in regards to my health problem itself, but because he said my case had to be one of the ugliest ones in terms of falling through the cracks, doctors seeing a problem but tossing it out once the most likely test didn't corroborate, and basically not being considered as a patient or even a human, but more a collection of complaints and lab reports -- and that's a major failing of how medical professionals are being trained.

Wow! That just warms my heart to see a doctor being concerned about his patients FEELINGS. Thanks for sharing your story!

Hi Shoe,

Yes!!! It was such a relief to finally be given a name for my myriad of symptoms. Congratulations! I'm so glad you have a doctor who believes you and wants to help. I had a lumbar puncture too, and agree that it wasn't bad at all as long as you lie down flat on your back for a few hours after in order to avoid a spinal headache.

yay!!

I find this as well... I told my doctor I have to take good moments and cram stuff into them, because the ability to do stuff is completely non-transferable. If I only could bottle and save the energy I have at one point to use it when I need/want to do something, but alas... It doesn't seem to work that way.

Very well put, Shoe. And welcome to the forum! You word things so well, I totally relate to your statement about cramming things into good moments. They don't come very often, but when they do you'll usually find me doing yardwork or organizing. I count that as my exercise on those days!

Hi Maxine, I don't have much advice to give except that I understand how it feels to be scared. When I was first going through the myriad of diagnostics for my various POTS symptoms, I had one odd lab result come back (cryoglobulins). It totally freaked my husband and I out, as the main cause of cryoglobulinemia was hep C (and I was an RN and have had exposure to body fluids). Well, I was negative for all the hepatitis bugs so they said it could be blood cancer and I was sent to the "o" doctor several times. It took several months and many tests to come up with a conclusion just like all the other conclusions for our symptoms: Well, it's not hepatitis, cancer, autoimmune, etc.... we don't really know! Since then, I've tested negative for cryo twice.

I know how scary it is to think about cancer, as my mom has been ill for a long time. Fear is a natural first reaction, especially if you've had to watch someone suffer from it in the past. Totally understandable.

Like Jana, I handle most all of the communication of my medical records. I like my PCP, but they stink when it comes to passing along info to other docs. The best investment I made was buying a cheap fax machine a year ago!

I prayed this morning that you would get answers soon, as I know this is only one of several serious health concerns you have. I hope you have a brighter day today.

Take care, Janie

I did talk with my PCP about some of these things... Of course when I asked about using cooling vests, she had the "smart" reply of why not just use an ice pack or a wet washcloth. (sarcastically: why didn't I think of that... )

Ha! Boy that really reveals what she knows about your condition. I probably didn't even need to type out this post, but I thought that remark was just so revealing (and not in a good way)! At least her patient has a clue!

Hi, the first step (which you've already done) is recognizing your grumpiness. Second, you recognize that your change in attitude is due to your illness (sounds like you've already done that too!). After that, just make sure that your family/friends understand about the whole lack of bloodflow to the brain issue. When I snap at someone because I've been upright too long, I try to immediately apologize and let them know that I need to lay down (even if it's on the floor!). I think people are usually really understanding if they can have it explained to them, that you're not mad at them but your body is letting you know you need to rest.

Hi Suzy,

First of all, I'm sending a gentle hug! Second, there ARE doctors out there who will believe you and help you. For me, going to Mayo provided us with reassurance of that fact. That in itself is so comforting, which helped reduce my anxiety, which helped my symptoms lessen somewhat. The neurologist I saw was determined to find answers for me. We had to stay a couple weeks, but my hubby had a month of leave set up if we needed it. We just wanted answers. You've suffered for so long! I just can't imagine having the physical issues that you deal with.

I really hope that your body pulls out of this slump soon! In the meantime, we'll be here for you! Janie

One thing I miss so much is going for long walks. Walking for me relieved stress, got me outside, made me stronger. Unfortunately with my heat intolerance, my body usually gets too warm pretty quickly. I know I WILL feel worse after I push myself, and I'll be more tired, foggy, painful, etc. But I have to live too! I just ordered a cooling vest and I hope it will allow me to do more outside.

As for will it harm us in the long-run, for most of us with POTS it is not a progressive disease. I can't answer for those here who have other types of dysautonomia. My docs suspect I have the more common neuropathic POTS, and I don't think there's really anything I can do that will actually cause more nerve damage (just like I can't do anything to make my nerves heal). I may feel horrible for hours, days, or weeks (depending on how much I pushed myself). I think it's more trial-and-error to figure out what kind of backlash you'll have from the activity. I know going for a walk for more than a block will produce some level of increased symptoms for me, but it feels so good when I can make myself ignore my POTS for a period of time and actually enjoy myself.

However, the longer I'm sick, the more I realize that trying to get more "conditioned" is not going to be my silver bullet!

Ha ha, Yes! I used to be the queen of multitasking! But instead of leaving keys in the car, they are often in the lock on the front door! I've even found them in the freezer!

Hi Jana, Everyone else here has so eloquently spoken about the value of your emotional support, so I don't have much to add. But you have been so supportive to the rest of us through your postings, it's so obvious you have a huge heart. I'm sure that's what drew your boyfriend to you. My mom has metastatic cancer and YES, it's frustrating that our disease limits out contributions. But we talk every day, and POTS has made me a great listener . You have so much to give, don't discount your contributions, the least of which being you understand some of the pain and fatigue he'll encounter in his recovery.

As a side note, my 59-year-old father-in-law just had a radical prostatectomy for prostate cancer. They weren't able to get it all out, but his lymph nodes were clean. If the remaining cells start growing again, then radiation will happen. Otherwise, his surgeon said it's most likely he'll die of old age. And there are so many advances in prostate cancer treatment. I think one of the large hospitals in southern CA has some kind of proton treatment that treats even the most aggressive prostate cancer. And even our local behind-the-times just started doing bloodless laser surgeries for prostate cancer.

Either way, I said a prayer for you both this morning. Take care, Janie

Hi Jan,

Sorry you're having to deal with this new symptom! I think any symptom that's new to you, especially something that could signify a more serious problem, deserves to be looked at by your doctor. I remember last August when this shortness of breath and tight chest feeling kicked in for me. I described it to my PCP as feeling like I was breathing through a straw, like every breath in and out took more effort. I'd had it on and off for about a week and decided for peace of mind to have it checked out. I went to an urgent care clinic first thing after they opened so I didn't have to wait around and they did an ECG, chest x-ray, BP, and listened to my chest. Of course, it was all normal except for the noticeable change in heartrate from lying (when they took the ECG) to just sitting (when the tech took my initial BP/HR). And my BP was high-ish (140's/90) sitting. At this time last year, I was seeing so many doctors for various symptoms all with the answer of "I don't know, maybe you should see my associate..." I just chalked it up to my mystery illness which I now know is POTS.

Now I just know that when I do anything that causes more pooling this symptom is worse, like getting too warm, doing too much, and some days it's there no matter what I do. At first, it was rather disconcerting, though. Since these symptoms can be a sign of more serious issues, it's always good to just get it checked out as soon as possible.

I know you probably can't get into your doctor today, but does your insurance cover an urgent care visit? Take care and I hope you feel better soon, Janie

Hi Linda,

She limits her foods to those low in fiber (although she can tolerate peeled, cooked apples), low in amines (amines make her carcinoid tumors active), no milk (totally lactose intolerant), 5 or 6 meals a day. She can eat steamed white rice, white bread baked without milk, oatmeal from quick oats, applesauce that she makes herself (no peels). Non-starcy food includes eggs, peanut butter, chicken, and she drinks a couple cans of a pre-digested tube feeding called Peptamen each day to supplement her calories and protein.

From what you said, her health situation is quite different than yours, although you can relate to the boredom. Poor things!

Since talking makes me feel sicker, I've become a much better listener ! And I've found that I should have started listening more a long time ago!

And like so many of you said, being ill has made my good relationships even better. Also, I so appreciate the beauty of nature when I'm feeling well enough to enjoy it.

Great idea for a thread!

Linda, I don't have much advice to give. But my mom knows how it is to have to live on such a restricted diet. Because of her severe diarrhea from carcinoid syndrome (and some other issues) she can only eat peeled potatoes, chicken, and a few other starchy foods. She's lived like this for years now, and never encountered the poisoning you mentioned. Just extreme boredom with her diet!

Yay! I've read your book , and you actually inspired me to write my own memoirs. Very inspirational! I'm glad more people will get to read your story!

I did alright on 0.05mg of florinef twice a day for several months. I was still pretty symptomatic, though, so we increased my dose to 0.1mg twice a day. It took about a month but then I began feeling sicker than ever from high blood pressure (headache, chest pain mostly). It's tough when you are desperate and I understand why your wife started so many new meds at a time. Keep trying to find the right combination for her. I hope she starts feeling better soon!

[Yes, I got those bumps when I first came down with POTS symptoms a few years ago, but I had a long list of more pressing medical issues and never got them investigated. My finger joints were painful too. It lasted maybe 6 months? They were painful little lumps on the palm side of my finger joints, maybe 3 of them. I forgot about them until you mentioned it in your post.

You're right to be concerned with the lack of communication. I think it's imperative to have a doctor who is willing to listen to your issues and respond to your questions, especially as your primary care doctor. Ask around to family and friends about their experiences with their doctors, maybe they'll have a recommendation. Good luck!

On another note, I was getting piercing ear pain last year and, just like many other of my issues, the practitioner was puzzled at how my ear canal looked and even brought in the "trainees" and had them take a look (I didn't have any pus or drainage, just lots of inflammation). And, like you, the ear that looked better was actually the painful one. They weren't sure it was a bacterial infection, so they gave me some pain meds and steroid drops to drop in my ear (which I don't think really helped). The pain just went away with time and I never really got any answers. Another medical mystery!

Maybe other people's insurance is more lenient, but I was told that my insurance only pays for things that have to be prescribed and that can't be bought "over the counter." I specifically asked about a cooling vest, since my doc really wants me to get one, but since I can get it without a prescription they won't pay. Since compression needs to be prescribed, they will pay. BUT they only pay for arm/hand compression if you have venous stasis ulcers from post-mastectomy lymphedema. They don't pay for lower body compression at all. My doctor sent them in all my diagnoses, and my Mayo notes stating my need for compression but they denied me. It stinks, but I'm not complaining too much because they pain most of my $20,000 Mayo visit.