janiedelite

Yeah, why do our dogs get to just ride across town to their vet and pay a couple hundred bucks, but we have to fly or drive cross-country (to Mayo, Vandy, etc.) and do fundraisers or mortgage the house?

I love this thread...

Hi UtahApoc,

So sorry to hear about your recent relapse. Sounds like you were doing so well! It really stinks to have to lay down all the time. A lot of folks with dysautonomia have "flares" and have worse symptoms for a period of time. It's scary while your feeling so badly, though, because all you know is how badly you feel right now. I'm glad you have an understanding doctor. Can he do anything else for you? I hope you feel better soon.

I got a wheelchair last fall on craigslist for $35. Not pretty, but it works! It's just a pain for my hubby to squeeze into the car. We only use it if we know I'll be up for a long time; we originally bought it for Christmas shopping trips. I also sometimes use it at Costco because they don't always have electric carts. I still use the electric scooters at the grocer. I used to be self-conscious about this but after being so ill last december when I couldn't go out at all, I'm thankful for any energy I have. Recently we bought a seatcane (after hearing Tearose brag so much about hers) . Love it! My hubby carries it for me, and all the elderly people comment on what a cool invention it is! It's much easier for me to take in the car. And if I have a "bad moment" I can sit on it and tell people I have a heart condition. They're usually very understanding. I also have a stool in the kitchen. Our house is only one-level, which is fabulous.

I think it was hardest for my hubby to accept my limitations after my symptoms really kicked in last summer. He would push me to do more, thinking that the more I did meant I must be feeling better . Then he figured out that after these excursions he has to care for a sick wife for hours or days...

Hey, thanks for the heads-up on the kinesiotape. I'll definitely ask her about it the next time. She's also done the craniosacral stuff on me in the past and it feels so good... I'm thankful that my insurance is paying right now. When I asked my PCP for the PT script I told her my reason was lumbar and thoracic pain, which it is. We're just thinking the reduction in sympathetic symptoms is a side benefit!

Unfortunately, I'm pooling more than ever right now and the skin pain kept me up most of the night...

Okay, back to reality. Veins are bulging again. Hands getting red and hot. Standing BP 130/87 P98. Still feel like I have more energy than before...

The PT is specifically targetting my thoracic spine with the hope of treating some of my sympathetic hyperactivity. She did a "scratch test" where she ran her finger up my thoracic spine and whatever areas are redder shows the areas of sympathetic dysfunction. Well, my entire thoracic spine went flaming red. She was trying "skin rolling" to loosen the facia (the layer of tissue just under your skin) there and couldn't even pick up my skin because it was so tight. She had to gently stretch my skin before the facia would budge at all.

I don't know if this is just hocus pocus, but I have arthritis in my back and this at least gives me some pain relief!

I just finished my second PT visit today where the PT is treating my lumbar, thoracic spine and pelvic/leg pain. I noticed after each visit that my HR was normal! Today, I was having horrible pooling? bulging veins and HR over 100 no matter how much salt/water I took in. During PT she worked on facial restriction of my T-spine followed by my left hip (2 hip surgeries in past 2 years). While she was working on my hip my whole body got cool. My hands which were red and hot all day are now cold and my face was very flushed! I also have more mind clarity, less chest pain, and easy breathing. Wow! I noticed last time that I had more energy for about 24 hours after being treated. My HR is now 60-70's and BP 120/80's!

I don't think this is necessarily a cure, but I'll take whatever relief I can get.

Hi Ruekat,

Proamatine is also Midodrine which helps constrict your peripheral blood vessels, helping with orthostatic intolerance (OI). Once in a while my standing BP will be low, but mostly the longer I'm upright the higher my BP will go and my heart does pound in my chest like you describe. I've also had the increasing anxiety like you describe, and I've never been diagnosed as clinically anxious or depressed or anything. I've always been fearless, but since my OI has worsened driving stresses me out. It's like I just get so stressed trying to focus on all of the traffic, acceleration, directions, etc. and my heart is pounding and chest hurts which becomes so distracting, worsening the cycle. My BP goes very high during this also.

I have tremors which become more pronounced the longer I'm upright. My extremities get very cold during the day and sometimes my feet even get pale/bluish and I get lesions which have been biopsied as being chronic frostbite. I have intermittent episodes of night sweats, and can feel really hot at night. I have chronic nausea and during a small bowel motility study I found out it is very slow. Activity makes my symptoms worse.

I recently posted about my trip to Mayo last month which will tell more about my symptoms and test results. But it's common for people with POTS to have elevated catecholamines (specifically norepinephrine) while upright which causes the "fight or flight" response. My levels are very high, and the doc said that explains my slow intestines, tremor, anxiety, cold extremities, high BP, etc. So for me, treating my venous pooling helps lower the fight or flight response and reduce the high BP, nausea, etc.

POTS has certainly been life-altering for me, and has slowly gotten worse over the last few years. I'm 35 now, and rarely went to the doctor prior to the last couple years. POTS symptoms are very scary, and being fully evaluated by an autonomic specialist was comforting to me because he sees patients like me all the time!

I agree that you might benefit from seeing an autonomic specialist. Compression hose are an easy and fairly cheap treatment, too! I wear mine every day!

I'm sorry you've gone through so much personal crisis lately. Combined with your physical deterioration, I can understand why you feel so helpless! I think you are on the right path toward getting answers. For most people with dysautonomia, the illness is life-altering but not degenerative. Each patient is different and you've already started the trial-and-error of trying to find the right combination of treatment. Sounds like you're doing a good job being your own advocate. Are you still working? Do you have anyone who can help you on days you feel really badly? Take care and keep searching!

My BP goes up (especially the diastolic, or bottom, number) when I'm symptomatic. My neurologist says it's a hyperadrenergic response to venous pooling. Salt and fluids help somewhat but I can overdo it and have hypertension especially when I'm lying down. This doesn't sound like exactly what's going on with you, though. Sounds like an issue for your cardiologist or neurologist.?

I'm sure you're aware of the basics to POTS treatment, but do you have a good pair of compression hose? Taking in lots of fluids? For me, I have to have firm compression (at least thigh-high if not waist-high) if I will do anything at all! Also, Miriam's advice was great when she suggested listening to how your body feels and acting accordingly.

It can be scary when we try to push ourselves and do more! But for me, I sometimes surprise myself with what I can do. As Firewatcher said, it is a balancing act to not overdo things. Yesterday I cleaned the ENTIRE house by myself (well, hubby carried the laundry basket) for the first time since last summer. Today I'm resting in my clean house!

For me, I can often tell how badly my dysautnomia is flaring by my headache. On those days when I've done too much, it helps me to hydrate as much as possible. Once my migraine sets in, it's usually accompanied by my other symptoms including nausea and vomitting. I have some phenergan syrup that's easy to swallow, but advil also helps somewhat for the pain. Like Firewatcher, I often just have to rest and sleep so I'll take a 1/2 a vicodin with the phenergan which will at least take the edge off.

I can totally relate to your descriptions about sleep. And I can tell that this directly correlates with my dysautonomia. On the days when I'm doing more stuff that stresses my ANS (standing, talking, stress) I can feel the horrible "adrenaline" surges. I think my sleep is a lot more shallow on those days. I can sometimes sleep for a few hours without dreaming, but usually past 4am all I do is dream one crazy dream after another. If I'm having a lot of chest pain and shortness of breath then I tend to have scary dreams about someone trying to kill me . And I've started snoring in the past year, and my husband says I have occasional apnea. I've asked my doc for a sleep study in the past but I don't know if she's aware of the connection between dysautonomia and sleep disorders.

For me, taking a benadryl before bed on my more symptomatic days helps me have a more restful sleep for the earlier part of the night at least.

Hi Jan,

I'm sorry you had such a hard time at work . I'm no expert, but the sweat test sounded abnormal which would mean autonomic dysfunction. My BP doesn't drop very often either, and during my TTT was alternately normal or high (up to 160/90's) and my heart rate increased about 40 points. But my sweat test was normal (that is, I sweated a ton!). The doc at Mayo said that the sweat test is a good indicator of central autonomic function, and that my venous pooling, painful skin, etc. were symptoms of peripheral autonomic nerve damage. I would think that with your sleep issues, apnea, etc. that combined with the abnormal sweat test would be red flags for dysautonomia.

Was the RN from your neurologist's office? Can you schedule an appointment with the neuro to really talk about the results and your symptoms? My mayo neuro said that my high BP (which is only high when I'm standing or doing something like talking then comes back down) is due to high norepinephrine in my system. Have you had a catecholamine test?

I was advised to increase salt and fluids because my high BP is a result of my body's attempts to compensate for my venous pooling. So if I can increase my blood volume then I'll have less circulating catecholamines. It helps somewhat but if I overdo it my BP is high and pulse is too low lying down.

And I'm sorry, but I can't remember where you were getting your tests done? Take care, Janie

Okay, I just got my records in the mail from Mayo which included his notes from our last visit. Overall I'm happy with what he wrote. It is good to have the diagnosis of Orthostatic Intolerance from a credible ANS doc, especially for my disability insurance . He did address the small intestine dysmotility, saying that my bowel might have been slowed from "physiological reasons" instead of a visceral neuropathy. Then he added that because of my hyperadrenergic state I may have developed sympathetic mediated slowing of my GI tract, which he said would also explain my bouts of nausea. I'm glad that he addressed my high standing catecholamines because during the first visit's notes he diagnosed me with anxiety . Not too happy about that as my primary doc and specialists here have never called me anxious in their notes.

His main suggestion for treatment was midodrine with pyridostigmine for venous pooling (midodrine 5mg po tid). So frustrating because I told him that when I took midodrine at 2.5mg tid (or any vasoconstrictor) it exacerbates my chronic frostbite and actually turned my feet blue and cold. In my last meeting with him, he said how difficult it would be to treat me because vasodilators will exacerbate my pooling while vasoconstrictors cause the opposite problem. He never addressed my chronic frostbite in his notes, even though he told me in the office that it was most likely due to high norepinephrine levels. I'm mostly just frustrated because I know that my long-term disability insurer is looking for any way to stop paying me.

The low part of his notes was "although she gets increased symptoms after exercising, I suspect come of this is simply because she is deconditioned, and the little bit of exercise will eventually help her." I've been walking 1/2 a mile twice a day (or doing similar activity) for 4 weeks now and have noticed slight improvement, which I think is mostly due to my increased salt and water intake.

I'm glad I went because he was very knowledgeable and I really appreciated hearing his interpretation of my results in person. If I hadn't had the last meeting with him and had just received these notes in the mail, I would have been pretty disappointed.

Just got my records in the mail! My doc will see me next friday to review them.

I have waited so long for my appointment at Mayo and it if finally almost here. I leave one week from Saturday!! I am excited and hopeful to get some good, useful information. I am also getting nervous about some of the tests they have scheduled. Most of all, I am upset because I got a new schedule in the mail today and I have been changed from an appointment with Dr. Low to Dr. Sandroni. I really wanted to see Dr. Low because I have heard great things about him. I pray that Dr. Sandroni is just as good.

Hi lolo,

I just got back from Mayo, Rochester, with Dr. Fealey Feb 6th. I posted in detail about that visit earlier, so I won't bore you with the details. I had my first appt with him 1/28 (that lasted over 2 hours) and he ordered a bunch of tests. Then I followed up with him 2/1 to go over those tests, which was a much shorter visit at about 45 minutes. Some tests came back with very unusual results and he said I could go home and have my doctors order follow-up tests or stay if I wanted. Well, my hubby and I know how long it takes to get into a specialist back home, order the tests, schedule the tests, and on and on... So we opted to stay for another week of tests. But Dr. Fealey didn't have any follow-up appts open til 2/18 (he was leaving for a week's vacation)!!! We finished with my last test at 11am on 2/6 and let the receptionist in his waiting area know our situation and that we'd wait all day if needed in his waiting area if he could try to see us. Which he did! He saw us after his last appt at about 4:30 so I knew the results of all my tests before left for home.

Travel tips... well I flew (we live over 2000 miles from Rochester). I don't pass out, but I get super high levels of adrenaline after being upright for so long. I tried to stay hydrated, but I also had a stressfull and long day the following day (my first appt and full day of tests). I got really sick that night with a horrible migraine and vomitting. I stayed clinically dehydrated for over 3 days, but I couldn't take antiemetics because they would mess up my tests, and I asked at one of the tests if they could give me an IV but there were only techs there so I'd have to go to the ER and miss the test. So my advice would be to stay as rested and hydrated as possible!

I spent a lot of my time there waiting in waiting areas. Sometimes there is a gap of time between tests but you can check in early to the next test and not have to wait so long. The waiting areas are a little cool (at least to me). I'd bring layers with you. There are benches in most of the waiting areas, but not all. I needed to lay down, and would let the receptionist know and she'd usually bring me back and let me lay in an empty treatment room or something. There are lots of wheelchairs so make use of them if you need to. Mayo is used to accomodating travelling patients and have lots of people to help you or answer questions.

They try to group your tests so as to help you spend the shortest time there possible, but sometimes there is a day or two gap. In that case, you can actually go to the area where your test is and talk with the receptionist to see if there might be any openings and wait around, if you're able.

We liked Dr. Fealey, who also is under Dr. Low. He was very thorough. BUT they said it would just be a couple weeks til my records are sent to my docs and to me but no one has received them yet! I had an appt with my primary care doc today to go over the records that I had to cancel because there are still no records after 3 weeks. Also, they will automatically send your records to your primary care doc and you, but not to anyone else (even though my referring doc was my neurologist). You have to fill out a form to have them send your records to any other physicians.

Also, I had weaned off my florinef several weeks prior to my appointment, but I'd taken some pain meds and benadryl before going. Dr. Fealey really wanted all those meds out of my system before doing autonomic tests because they effect the central nervous system and might skew the results. I had only taken a 1/2 of a vicodin on the plane, though, and benadryl 2 nights prior so he let me proceed with the tests. He was mostly concerned about the sweat test since benadryl has some anticholinergic properties, but I sweated just fine (oh boy did I!). And I was having GI motility tests which the vicodin could interfere with so we just scheduled that test after all the others a couple days out.

Hope this helps! I learned a lot from my time there. It was worth the trip, the stress, getting sick, etc.

I saw Dr. Grubb and he confirmed what Bev said that I have JHM... I was okay with that until he started to tell me that I may be dealing with this for a long time, as opposed to what I was told before about the 2-5year turn around... so i'm dealing with that

I'm sorry.... it's hard enough to deal with an illness that will last a few years, but even harder when there's no end in sight. I think Maxine offered some good advice about investigating your JHS; when you feel up to it.

Hugs to you, Janie

Hi Maxine,

I've been in PT for the last couple years because of a hip injury after a car accident. But one day the PT was evaluating my whole spine and she kept commenting how "stuck" my thoracic spine was. She spent 20 minutes or so working on muscles and what she called scar tissue along my thoracic spine. I had so much energy afterward and my abdominal pain/nausea and burning skin pain was nearly gone for a couple hours! A scan shows that I do have degeneration of my thoracic spine (I'm only 35), and the PT couldn't focus on my spine anymore because she was supposed to be working on my hip (which has much less pain after my sessions with her).

Now that I'm back from Mayo with an "official" diagnosis and all, I've scheduled PT on my thoracic spine to see how it helps my dysautonomia. When I see my doctor to get the prescription, I'm just going to ask her to prescribe PT for "back pain." I've had increasing thoracic pain since my POTS has gotten worse anyway. The first PT said that our sympathetic nerve chains run just behind the thoracic spine and that, in my case, it felt like I have a lot of scar tissue in there that might be interfering with the nerves.? Dr. Fealey at Mayo said that my hyper sympathetic NS is just an adrenal response to the brain's call for more oxygen. So maybe what the PT said is hogwash, but hey it's covered by my insurance and I felt better even if just for a short while!

I don't get that neurologist attributing your lesions to migraines... I know you must be wiped out right now. Maybe you could just get back into the PT at least for some pain relief???

Is your mom able to see another neurosurgeon for a second opinion? She could bring her scans to show him the aneurysm.

I can understand how it feels to want to help your mom and be there for her while being sick yourself. My mom has had carcinoid syndrome (a rare small bowel tumor) with metastases for over 20 years. She's disabled, really thin, and gets tired easily but we enjoy every day together. Your mom is lucky to have such a compassionate daughter who wants to help her. Are there other family members who can lend a hand during her recovery?

I wish I knew more about coiling vs clipping... but it sounds like you're on the right track and making sure she has the treatment that's best for her.

I'm so glad someone addressed this belief that our symptoms are so largely due to deconditioning. As All4Family said, I have good episodes as well as flares. Last week I felt so good one afternoon that I raked yard debris and filled a huge can all by myself. I was walking a 1/2 mile up and down a hill each morning and evening last week. Then this past weekend I'm so symptomatic that even talking hurts. So was I symptomatic because I'm deconditioned all of a sudden??? I know I'm not in as good shape as I was a few years ago before POTS, and if I laid in bed all the time I probably would be worse off in the end. But our bodies only allow us to do so much!

Hi Zoe,

You're right to look for a good POTS specialist because there are meds out there. You do really need someone knowledgeable about these meds and POTS. All of us have slightly different symptoms and reactions to meds which makes treating this illness complicated sometimes. Your doctor will need to take into account your heart history also.

Have you checked your daughter's heartrate lying and standing? Maybe try checking it first thing before she gets out of bed (that will give you a good idea of her resting heartrate), and then have her get up, get dressed, brush her teeth, whatever, and have her keep standing and check it again. The standing pulse shouldn't be over 20-30 points higher than the pulse lying down. If it is, it could be indicative of POTS.

I don't know how old your daughter is, but a systolic BP of 58 is pretty low.

Take care, Janie

Even though I can't tolerate florinef and midodrine, I can tolerate compression hose and pushing salt and fluid. I think that's because I have more control and can easily regulate these measures. I hope to try other POTS meds in the future, but these work okay for now.

Hi masumeh,

Wow! I'm glad you found a neurologist who was willing to follow up on your symptoms and ordered that EEG. Maybe he can help you get into a knowledgeable POTS doctor who will be willing to investigate? It sounds like you are being a good advocate for yourself. Good job, and I hope you get some answers soon!

Just a question, was the EEG done lying or sitting? I would assume that with POTS you'd have more hypoxia while upright. Did they do the EEG in both positions? Pardon me, but I don't know much about EEG's.

Janie

I'm so glad that someone brought up this topic! I have to say that POTS has actually changed my personality somewhat. I used to be pretty intense, in the middle of things, but now I find that I feel best if I do mostly listening during conversations. My friends/family actually don't mind, and I actually kind of like the "new" me!

During my TTT they were doing beat-to-beat BP monitoring and my resting BP was around 130/80. I was conversing with the tech between tests and glanced at the monitor and saw that my BP was 160's/90's! I stopped talking and it came down to 130/80 in 10 seconds or so. I continued conversation and up it went again! And we were talking about rather mundane stuff, too. Yesterday I had a 1/2 hour phone conversation with my disability insurance representative (who is very pleasant, but it's still a bit stressful) and felt horrible during the whole call. I checked my BP afterward and it was 130/98. In that case, I felt somewhat "ramped up" for the rest of the day. I was sensitive to light, talking, and didn't sleep much last night either.

Last Sunday, I attended my mom's carcinoid cancer support group with her. I've even led the group in the past, and our current leader was talking about putting on a one-day conference for Oregon and Washington patients. One of the patients wanted someone to do a presentation on how to talk with doctors. I'm a nurse, and I volunteered to do the presentation. I found out that the leader intended me to speak at the conference (not at the next support group like I'd assumed) in front of over 100 patients and a panel of doctors! Pre-POTS this wouldn't have been a problem, but I had to tell her after the meeting that my body just doesn't handle that kind of pressure anymore, but that I'd be happy to talk at the next support group. She understood, but she said that I looked so good she didn't realize how unwell I felt which was cute because carcinoid patients get that comment all the time, too!

Feel better soon!!!

If you get these spells when your heart is racing, it is normal to experience some sense of heightened thought. Try doing "self talk" it is you speaking lovingly to yourself in a nurturing way. Say, "okay, what is this I am feeling / experiencing. Is this fear based in real-time or POTS time. Is it okay to just let this go? Am I in real danger or is this just my body going funky?" Then, do everything you can to bring your heart rate down and breathe deep and hydrate. Rest."?

It may seem unusual to some not POTS people, but you will learn how to "ignore" many symptoms because over time you learn and train yourself to recognize and let go of the emotional concern. Your body is trying hard to get into physical balance so do not let your mind race when your heart does! Many of us have been told by top ANS doctors that the symptoms are a disruption to our life but will not kill us.

This may sound simple but it will come with practice. Read spiritually centered materials. Lead with a strong, peaceful mind. Foster kindness and compassion in your heart. The rest of your body will learn to follow.

Tearose really said it well. I've had POTS symptoms for 3 years but really bad for just the past year. It's hard for those of us who remember how healthy we were before dysautonomia and we feel frustrated and helpless! The symptoms can be very scary. BUT it's amazing how dwelling on all the scary "what if" thoughts will worsen my symptoms. I've become much more passive, realizing that my body just can't handle the stress of worrying. Some days I have to force myself to be distracted from my chest pain, tight chest, etc. For me what helps is playing quiet, uplifting music, reading a book, calling a friend to talk about how they are doing (not about how badly I feel), and forcing myself to think about the things in life that bring me contentment. When I feel well enough, my hubby takes me for a drive and we stop and just look at the scenery, feel the wind, enjoy the vast beauty of our world. I dwell on these times when I'm laying in bed not able to take a deep breath and feeling every painful heartbeat. For me, this works better than any medication I've found.