janiedelite

Wow, Maxine. Your pain (emotionally and physically) was so evident as I read your post. But you really articulated your various concerns very well. Maybe you could print off this last post and use it as a guide when you see your doctor?

I understand your fear regarding the family history of colon cancer and your progressively worsening GI symptoms. My mom has carcinoid syndrome and as you know many of my POTS and her carcinoid symptoms are the same. She got sick when she was in her 30's too. Even though there's no evidence of tumors on my scans right now, I will be getting regular blood draws to make sure I stay free of carcinoid. I'm a nurse, and have seen people through all stages of their cancer/disease process. It's so hard to watch my mom walk that path, too. It's understandable to be anxious about the future, but please know that your life is a blessing to those around you. I really hope you can get some answers and maybe some treatments that will let you live with less pain.

Take care, Janie

P.S. I just read Firewatcher's post... looks like she had the same thought about how well you worded your original message.

Oh wow, Suzy, you got me crying at 10:30 in the morning... Thank you for your beautiful attitude about your situation, family, and all the rude, insensitive people out there. We can all relate, if on a smaller degree, and your gracious way of handling these difficulties (with your family's help) is really inspiring. I'm so glad you're on this group...

We're all "Lucky" in one way or another, Janie

Before I go to bed each night I mix 1/2 a tsp of salt into 20 ounces of G2 (along with some benefiber for GI issues..). Every morning I wake up so tired, sore, and my throat and head feel like when you have a hangover. The G2 helps with some of the fatigue and orthostatic symptoms. Now I'm just laying here at 10:30am knowing I need to take a quick bath and get dressed. The pain and fatigue are the worst. But I know that once I get up, take a luke warm quick bath and get my compression hose on, I'll feel a bit better. Ugh... here I go!

For me, I know that I get super dehydrated easily and I tend to stay in bed for a good 11-12 hours a night. I also have a lot of pain due to dysautonomia mostly, but also due to a car accident and back/hip injuries so laying in bed makes my muscles get all sore and tight. Also I never feel rested even if I sleep 9+ hours. Getting hydrated first thing on waking, getting my compression hose on, and taking a slow walk in the mornings usually help me feel a bit better.

0=never

1=a few days a year

2=2-3 days a week

3=2-3 days a week

4=most mornings, especially before putting on my compression hose, usually better by 2-3 pm

5=never have passed out but I experience these "crashes" 3-4 times a month (usually preceded by stress, strenuous activity, hormones)

Hi Michele,

Firewatcher already said it so well. I can relate to the experiences in church, though. My hubby and I always pick an area in the back and towards an aisle (so I can lay down during the service and not attract attention, and so we can leave if needed). We didn't go to church this weekend because we knew it would be crowded. We had lunch with my parents and grandparents instead, though.

I hope you find some better treatments for your symptoms. I've also had POTS for about 3 years now, although the worst of it hit about a year ago. I remember what it was like to have unlimited energy. I definitely have grieved as I realized what I couldn't do anymore (especially work as an RN). But like Firewatcher, I try to choose each day to enjoy what I can do, such as looking at the spring flowers I planted a couple weekends ago, having lunch with family, talking on the phone with friends. Try to make some plans for the future whether it's taking an on-line class, or working on a home-made mother's day present. Accomplishing little goals will help you focus on what you can still do and not so much on your limitations.

I've been told by the Mayo doc that I could get better, but my mom also has idiopathic neuropathy and she's 60. My husband has more hope than I do that I'll recover from POTS, but I just try to take it one day at a time and as Firewatcher said, choose hope.

Hi Firewatcher,

I take narcotic pain meds as needed for my neuropathy pain. I also have chronic hip pain (from a car accident) and took narcotics over the last couple years in between my two surgeries. It ended up being that the surgeon missed a ruptured ligament during the first surgery so I was walking on a ruptured ligament for 16 months til the second surgery in 1/08. During those 16 months, I was in so much pain I quit my nursing job and had to use crutches or a cane to walk. I was on every non-narcotic pain reliever possible but my stomach got so irritated. I couldn't sleep through the pain and narcotics and benadryl let me sleep.

Then the hip improves after my surgery in 1/08 (very gradually) and this burning neuropathy pain starts in full force in 6/08. Again, narcotics and benadryl are the only thing that helps. I can't tolerate meds like neurontin and lyrica due to side effects. During flares, I try to take the minimal amount necessary to keep me sane through the pain but during the warm months (june to october) I take narcotics on a pretty regular basis. I know my body develops a level of tolerance and DEPENDENCE to the drugs while I'm taking them regularly, but I'm honest with my docs about my pain and medication use. Before POTS, I could definitely tell when I was going through some withdrawal because of the nausea, jitteryness, etc. Now, I never feel when I'm going through withdrawal because of my constant POTS symptoms.

I've never had to take benzodiazapines (like klonopin) regularly, but my mom does to help her control her carcinoid syndrome symptoms. She's been on xanax for years. She can definitely tell when she misses a dose, but it still helps her even though she has certainly developed a tolerance and become physically dependant.

I think as long as you're honest with your doctor about your symptoms and how often you take the meds, that these meds were invented for people like us!

Addiction occurs when you are emotionally/psychologically dependent on a medication. Dependence is a naturaly result of taking these meds, though, and nothing to be ashamed of!!!!!

I certainly understand your hesitation to increase your dose. It's good to be honest with your doc about your concerns to make sure there are no other options available, and to hear about his experiences weaning folks off of the drug.

My docs have been very kind and didn't give me any driving restrictions. I don't faint, though. But on worse POTS days the sun and movement of other cars makes me feel so dizzy and I get an immediate piercing headache. I live in the city and my doctor's office and grocery store are within short distances. And I usually don't have to drive on the freeway where I get dizzy much faster. I usually stick to less-frequented side roads.

If I have the option of someone else driving, I let them. Today my mom and I go to grocery shopping together and she will drive.

Also, I don't know if anyone else notices this but I feel much dizzier/overstimulated on sunny days. Living in the Pacific Northwest, most days are cloudy and that's actually a really good thing for me! I have extra dark prescription sunglasses to wear when I'm riding in the car on a sunny day, but often I just have to hold my pocketbook over my eyes and lay down because the bright sunshine alternating with shadows and then brightness again makes me feel so horrible.

YAY!!!!!!!!!!!!!!!!!!!!!!!!

SO happy for you! Janie

Hi Hollie, has the Paxil helped?

For me, I can tell when my irritability is solely POTS because as soon as I lay down I feel better!

I'm sorry you have to watch your daughter suffer so much. I'll pray that she gets better soon and that her spirits are encouraged. Thank you for the update.

Janie

I often have nausea even when my POTS isn't really flared, but when my POTS flares up I definitely have worsening nausea and vomitting. I don't have gastroparesis, but my small intestines don't move food through properly. So, like Rachel suggested, even when I'm nauseated I try to drink mint or ginger tea because getting dehydrated just makes everything worse!

My Mayo doc had the same advice regarding controlling the POTS/hypovolemia in order to control the nausea and vomitting.

I hope you can get some relief.

Hi Mae,

I'm sorry you have a reason to be on this forum, but I'm glad you found us! You said you were "a week away" from diagnosis... are you getting tests back or something? And yes, I was told my purple feet were Raynauds and red feet were Erythromelalgia. I hope you can get some answers soon. As you've probably figured out, there aren't cures for dysautonomia but many people get symptom improvement with certain treatments.

Let us know how things are going, Janie

Oh, I'm sorry you're having such a long wait! Is there a receptionist in the waiting area who can call to the OR to get an update for you??? The hospitals I've worked in usually had some way for the family to get updates. Good thoughts are still being sent...

I don't have great answers, just what I do in order to get by. I have a large rice pack that you can heat in the microwave and I'll lay on it so it covers my whole back. Then I try to really stretch my back, hips, and even got my hubby to help with the hip stretches last night. I go to PT for my back pain, and she does chiropractic-like adjustment with myofacial release. I'm often very sore for several days afterward, but it mostly feels like the sore muscles/lactic acid you described. Advil is a must. I can take a 1/2 a vicodin without much constipation, and I add a benadryl because it seems to help sometimes too (it makes me drowsy especially in conjunction with vicodin but when you hurt badly enough, oh well). Otherwise, if my neuropathy pain is really flared I just take vicodin as needed (with advil and benadryl), and I have some enemas on hand because I'll probably need them. .

I also try to not lay around too much (so hard to do) because that seems to make my muscles even tighter faster. I hope you find a solution, Janie

Hi Sophia,

I didn't realize the wedges were just for sitting in bed... oops! I've never had one, they were just recommended to me by the OB. And you're right that raising the head of the bed is certainly not for everyone. For me, the doc thought it would be helpful in order to prevent further deconditioning since I was spending so much time lying in bed. I think it has helped somewhat, although I implemented other treatments at the same time I raised my bed. My BP is low-normal (100's/50's) lying down and goes up on standing. I only have my bed elevated 3 inches, though. Thanks, Janie

Thoughts are sent... My mom is ill right now too, and I can understand the anxiety. Take care of yourself too!

Janie

Congratulations Deucykub!!! My hubby and I had put off getting pregnant until I was seen at Mayo and were certain I didn't have anything more than POTS and neuropathy. They gave us the okay, so I hope to join you soon in the pregnant-POTS club!

Last year, my regular gyno (who's also a great OB) knew we wanted to get pregnant but sent me to a high-risk OB because of my crazy symptoms, just so we could be prepared for when we start trying to get pregnant. The high-risk OB said he's only delivered one other POTS patient and she felt awful during her pregnancy, and he did a C-section to avoid a difficult labor. During this time, I got diagnosed at Mayo and the doc there said it should be fine for me to get pregnant and advised the OB to watch for hypertension. He said that since I'm not on any regular POTS meds and am pretty stable right now, he wants to ask my regular OB/gyn to see if she'll be willing to take me back. I see her for my yearly appt in 2 weeks and I'm going to ask her how comfortable she is with managing me if I get pregnant. However, I know that if I am her patient and go into labor, I might end up with her or with her partner.

So what's better, a high-risk OB who doesn't know much about POTS or regular OB who I really like but also doesn't know much about POTS???

P.S. I'm sure the high-risk OB would be willing to take me back if I started having complications my regular OB couldn't handle.

Congrats again, and like I mentioned the Mayo doc told me to watch for hypertension because our blood volume explands during pregnancy.

Take care, Janie

Thanks, Sophia, for the suggestions to ask about Alpha intrusion, or alpha-delta sleep disorder. And you're right about having something benign to focus on just prior to sleep. It really helps! My hubby likes to go to sleep sometimes while I still feel ramped and I always have a booklight and a novel on my nightstand to distract my busy mind...

Thank you Maxine. Yes, that's why I was so surprised her local doc told her not to do anything. But at least she's being taken seriously now. Thank you.

Dani,

I'm so sorry that you have so much taken away at such a young age. Broken Shell already gave really great advice, and I can't add much. I came down with POTS when I was 32, and feel blessed to have lived to the fullest for the first 32 years. I still try to see my life as being lived to the fullest, just with different expectations. I rarely plan things because I usually don't feel like doing much anyway. Someone asked me yesterday "what are your plans tomorrow?" Such a simple question, but I couldn't answer at first. What do you say? I said "I think I'm going to go for a walk." Probably didn't sound like much, but it's a lofty goal for me!

Unfortunately, I lost most of my "friends" when I became ill. That was really okay, though, because the people who stuck around are real jewels. I know they're really there for me. And the plus side of POTS is that you have plenty of time to email and chat. I guess my one piece of advice would be to try not to live for your friends, but for yourself. Do what you can do, and be proud of yourself when you exceed your expectations. Otherwise, maybe a friend can come over and watch a movie at your house instead of going out? It's the friends who just want to be with you, in spite of your limitations, who are worth keeping anyway!

I wish I could give you a hug... Janie

Hi ajw,

I recently got back from Mayo and had much of the same testing as you, and they gave me the diagnosis of POTS due to small fiber neuropathy also! I had an abdominal fat pad biopsy (not as bad as it sounds, just like giving an insulin shot but with a bigger needle) and came back negative for amyoidosis. I also had literally dozens of other tests for small fiber neuropathy that came back normal. He couldn't completely rule out MCAD, but the labs were normal for that too. I know it's so hard to not dwell on the worst case scenario. My hubby and I were so relieved once all the "bad" stuff was ruled out and we found out I mainly had neuropathy and POTS. I have a tremor, too. I also feel fatigued even lying down and pool not just in my legs, but my arms, and torso.

Compression hose: I went online to brightlifedirect.com and got their allegro brand. They're cheap and on the website there is a measuring chart to figure out your size. I use their thigh-high hose, especially on days when I'm having more nausea/tummy issues. I also have waist-high Jobst ultra sheer and they're so comfortable but still give great support. They run easily though and are over $100. A nice side effect of the waist-high hose is they serve as kind of a lower-body girdle . I have abdominal pooling, too, so I wear the waist high most days. I wear some kind of hose every day, though.

Head of bed: I couldn't tolerate having my bed raised more than 3 inches at first. My hubby and I stuck books under the top corners of the bedframe. I've heard you can also buy wedges at medical supply stores (like for pregnant women who have GERD and sleep with their head up). I think I'm going to try to raise our bed up another inch.

I'm so sorry about you guys losing your income! All the family stuff sounds like the pits. I don't have any advice about Cymbalta. The suggestions your doc gave you (along with extra salt and fluids and avoiding stress) have really helped me in the past couple months. I was nearly bedridden before Mayo, but can do quite a bit around the house and feel safe enough to drive most days! I hope you get some relief soon.

Take care, Janie

She was seen at the GI doc's today (they got her an appt as soon as her oncologist sent the referral which was nice). We spent most of the time educating the nurse practitioner about carcinoid syndrome and carcinoid crisis. But she saw the CT and they want to do the colonoscopy asap. Mom really wanted this one GI doc who has a great reputation, but they want to do her scope in the hospital instead of their outpatient clinic because of her medical needs understandably. That doc isn't scheduled in the hospital for over 6 weeks. So she sees another GI doc next Friday for her colonoscopy at the hospital. But the good news is that they're totally willing to collaborate with her carcinoid specialist in New Orleans and run an octreotide drip the whole time! The prep will dehydrate her most likely and it seems to strip a lot of her intestinal flora which takes her months to "normalize" (normal is in quotes because she's never "normal"). I'm thankful her condition is being taken seriously. Instead of 2 steps forward, one step back, lately it seems like 2 steps backward but now we're finally taking a step forward again. I hope she doesn't feel too poorly as a result of this prep and procedure and lose more weight, but she probably will and it has to be done.

The nurse practitioner couldn't understand why her local oncologist said she didn't need a colonoscopy either... she said a possible intussuception needs to be evaluated urgently, as I suspected.

Okay, I did the sleep study last night. I tried sleeping just 8-hours a night but it ended up being more like 9. I guess I'm just not a good masochist. But yesterday I drank as little as possible and did a whole lot (went for 3 walks, bathed the dogs, etc.). I was actually surprised at how well I was still functioning at the end of the day. But I don't feel like I slept well. It seemed really shallow and fragmented and my heart kept taking off. I think it was the adrenaline hangover from the day prior. But that's what I was shooting for!

The tech told me I didn't have any major obstructive events, so that's great. I don't think I'll need a CPAP... although I'll wait on the final word when I see my sleep doc next Monday. I slept on my side because of all the wires, though. I snore and obstruct when I'm on my back (and at home I always end up on my back most of the night!). I tried to sleep on my back but it was too uncomfortable...

What takes a person who is not orthostatic-challenged minutes, becomes an entire morning undertaking for someone with Dysautonomia ? and that?s on a GOOD DAY! Fortunately today was a good day and I could make this token contribution to the homestead.~EM

EM,

Thanks for sharing your story! I felt like I was doing laundry with you step by step! I can sure relate to the careful planning it takes to do chores like that.

I wish I had suggestions for you. I live in a one-level house, which is wonderful. We have hardwoods and a laundry cart that my hubby loads and then I can lean on it as I go to the laundry room (aka the garage). It's usually nice and cool in there which helps me vasoconstrict and gives me a boost. Often, I leave the folding til the next day when I have more energy. Ironing? Hah!

Sleep well in your fresh sheets, Janie

Nope, never feel normal. However, I've been sick for about 3 years now so I think I'm beginning to forget what normal feels like. It's kind of a good thing. I just try to deal with how I feel on a day-to-day basis.

I took a small dose of octreotide once (caused horrible GI cramps and big D so couldn't keep taking it). But my head was so clear! I hung a new shower curtain liner, dusted for the first time in a year, read a book and felt alert! My pain was nearly gone, and I slept well. It lasted for a few hours and I realized how badly I felt all the time in comparison to "normal." I was pretty depressed the next day.

I realize how sick I am when I spend time with my family and friends and see how much they're able to do! I try not to think about it too much because I know I'm doing everything I can to make my situation better and there's nothing else I can do right now.

Michele, I had my first visit to the ER for tachycardia in 10/06 also! Must have been something in the air... I had mono 6/06 and the Mayo doc thinks that's when my neuropathy was triggered.