janiedelite

I go to a protestant service, but spoke with the pastor to let him know about my illness and that I'd be lying down in one of the back rows so that I'd still be able to attend. I sometimes got funny looks from the other congregants but just told them that I had a heart problem and then they were sympathetic.

Have you tried domperidone? It can be helpful for nausea and stomach dysmotility and doesn't have the extrapyramidal side effects that reglan has.

Pedialyte might be helpful too!

Sounds like she hasn't really been helpful anyway. I suggested getting a copy of your records so you could see if she really thought you had a mental health issue. If you could get your husband to tell you exactly when the doctor spoke with him even when she wasn't authorized, you could make a formal complaint. However, I'm not sure what good that would do. I try to keep on good terms with my physicians, even the ones that I no longer see for various reasons. That good rapport can only be helpful if your new doc talks with your old doc or reads her notes about you.

Mostly, you need a doctor with whom you can have a good working relationship. Try to focus on advocating for yourself.

I agree with Sue1234! Also, I'm sure you know it's important to maintain your fluids and electrolyte levels during this time. I use water, pink himalayan sea salt and EmergenC packets.

Check out the "what helps" on the DINET home page: http://www.dinet.org/what_helps.htm

Can any of the other physicians in the clinic get you an IV today? So sorry; maybe if you got the IV into your system you'd feel well enough to make new arrangements for a physician.

My EMG is pretty normal, but when I did a Functional Capacity Eval (done by a PT to assess what type of work I could do) it showed that I was very weak. I was SO surprised! I did the exam on a day when I thought I was feeling fairly good. I do notice that when I'm more hydrated that the weakness isn't so bad, although there are some days when I have no control over the fatigue and weakness.

I should have mentioned that Mayo diagnosed me with small fiber neuropathy as a result of my burning pain

From your previous posts, you mentioned that your husband has some mental and emotional problems of his own. I suggest you go get a copy of your medical records from the last few visits with your doctor. If you take issue with anything that is in them, you should get a new doctor. It sounds like you may need a new primary doctor anyway, if she's not willing to work with you to get you the help you need.

Hi Dani,

I started having burning skin in 2008. I've spoken with one other member who reports this symptom only occurring sporadically. What helps me is staying hydrated, cool cloths, neurontin, and sometimes benadryl helps. Please PM me for more questions!

The best advice I've received was from my Mayo neurologist who said that my high BP and elevated norepinephrine was just an above-normal response to my main abnormal problem - pooling. Addressing the pooling with compression, fluids and salt has been most helpful. Otherwise, you can see my med list below. It would be advisable to ask your doctor about the fluids/salt/compression route before you make any big changes.

THANKS Firewatcher! That was very helpful. The first day I just drank 1.5 liters and didn't "dump" much when it wore off and felt pretty dehydrated. I increased my fluids and it's helped, but I'm still very POTSy/symptomatic during the second half of the day. I'm thankful for the 4-5 hours of decreased symptoms that the DDAVP has provided. I'm going to add a bedtime dose of 0.1mg tonight. Maybe that will help my morning fatigue and nausea.

I just started taking DDAVP this week. I can take up to 0.1mg twice a day, but right now am just taking 0.1mg in the morning.

1. The pharmacist said it can take up to a week before the med builds up in my system. He said to wean up slowly so that I don't end up in fluid overload. Is this true?

2. I'm so used to pushing fluids (3-4 liters/day) and salt (10 grams/day)! How much salt and fluids to you take in? The DDAVP helps me to not feel so thirsty, but when it wears off I'm left feeling quite dehydrated.

3. My doc also prescribed florinef to take as needed. Has anyone taken florinef and DDAVP at the same time? My doctor knows that I regularly check my BP, especially when on new meds, and she has confidence that I can titrate my doses of these meds. (I worked as an RN prior to POTS, and we've had lots of talks about monitoring my BP and symptoms). I may have to start a new thread to get this question answered.

Thanks

Yes, I'm using midodrine but I try to take it only when my systolic BP is under 120 (that's the top number), which is what I was advised by the doctor who prescribed it for me. I'd ask your doctor what BP they are comfortable with in order for you to take the midodrine.

Also, I play with the dose. Sometimes I need the full 10mg, but this morning I only took 2.5mg because I needed something to help my symptoms before my dose of desmopressin kicked in.

I do find that I need to keep an eye on my BP. Sometimes when I feel that my midodrine has worn off, my BP will still be high (150's/90's) but I still have that aching POTSy fatigue! So I have to hold off on the midodrine at those times and just try to rest.

Midodrine is a blessing because it helps me be more active in the heat, if we are at a social event, any time when I need to be more functional than usual. I try to take it just before I need to be functional and know that I'll have 3-4 hours of feeling better before I'll need to check my BP and see if I can take another dose or if my BP's too high.

Once I was admitted to the hospital because of an episode of high BP and chest pain. My CK was normal, but my troponin was elevated at 0.35. My BP was sustained at 180's/110's and I couldn't get it to come down for over an hour. I ended up responding well to nitroglycerin. It ended up that I was having odd sympathetic surges as a result of being on mestinon.

My cardiologist (who is a POTS expert) said that anytime our hearts are stressed it can lead to elevated cardiac enzymes. It doesn't have to be from a blockage or arterial spasm that would cause a heart attack (which happens when part of the heart muscle is deprived of blood flow and can die). The heart is a muscle, and whenever it works too hard it releases those enzymes.

What my doc also told me is that it's not momentary swings in heart rate or BP that can stress the heart enough to cause permanent heart muscle damage. One has to have quite a sustained event in order for that to happen.

My cardiologist wants me to have yearly echos done as well as EKG's. My heart is still working just fine in spite of my hyperadrenergic POTS issues, but I take comfort in knowing that I have a knowledgeable doc to help if I start to have distressing symptoms and who can monitor my heart in the meantime.

It may have been best if K could have had her entire GI tract tested for motility (stomach to rectum). I have the same constipation issues she describes but it was my small intestine that wasn't moving well, not my stomach.

Just a quick reply about the compression hose... I wear as high a level of compression that I can stand. Compression is a must in order for me to be upright much at all.

I agree! I took my BP after having taken midodrine. I could figure out when it started to leave my system and then laid down, just checking my BP every little bit. I never got that high of BP's lying down as long as I timed my "naps" right.

Sounds like you've already received great advice here. My husband is a special education teacher, and if you chose to do online schooling, he could be assigned a special ed teacher through that program (and given an IEP or 504 plan, depending on his limitations). Our state has quite a few online charter schools to choose from.

I think that if you experience a new symptom or a distressing increase in your current symptoms, you should ask your doctor about it (even if it's just a phone call). It's a good idea when you see your doctor to ask how they would like you to try to manage your most distressing symptoms. Most dr's offices have someone on-call around the clock. That way, if you're experiencing distressing symptoms and the doctor tells you to go to the ER, they can call ahead and let the hospital know that you're coming and you'll be treated quicker and your symptoms will be taken more seriously.

Hi London,

Welcome! I have chest pain that is associated with my POTS that I consider pretty mild yet always present. I have occasionally had the pain that radiates down my left arm and into my jaw. At the time, I was also having some abnormal high BP readings (180's/110's). I went to the ER and my troponin was elevated so I was kept overnight and given nitroglycerin. Oh I loved that drug! I could finally breathe and think clearly (until I stood up and my BP plummeted )! My heart looks totally normal and my EKG is always fine (just fast when standing, but usually only 120's at worst unlike your super-high heartrates). My stress test and echo was normal.

I found that taking carvedilol really helped with my chest pain. I only took 6.25mg twice a day. It's an alpha and beta blocker. However, recently my cardiologist put me on paxil 25mg twice a day. I was able to wean off of the carvedilol and have just a slight return of the chest pain. Also, I have more energy than I did while on the carvedilol.

My cardiologist said that my heart was being strained from the increase in BP which caused the high troponin levels and increased chest pain. I'm wondering if your super high heartrates aren't straining your heart a bit? I'm glad you're on a beta blocker, but it sounds like you may benefit from something in addition. Nitro will probably just increase your syncopal sensations unfortunately and your heartrate. The SSRI did help me, but it took over a month to get over the side effects. Also, carvedilol might be helpful, although it can drop your BP which wouldn't help you much!

I use gabapentin for neuropathy pain. It is slightly less effective than lyrica, and still causes the same side effects like fatigue, dizziness, etc., but to a lesser degree. It is also less expensive and a little easier to wean off from, in case you ever have to do so. I liked lyrica's ability to control my pain but felt really "spacey" on it and had a lot of fuzzy vision. I was on it for 10 days, and it took 2 weeks before the withdrawal symptoms subsided (which felt mostly like a huge increase in POTS symptoms - more pain, chest pain, nausea, insomnia, sweats, etc).

When I complained about neuropathy pain to my PCP, and later to my neurologist, they each had me start with gabapentin first. Just a thought!

After a bit of caffeine, I feel so GREAT! But within an hour or so, I get my usual sympathetic overstimulation and get chest pain, palpitations, and it eventually causes dehydration which makes me sicker for the next couple days.

I've had POTS since 10/06. One weekend in June of 2008, it was particularly hot (over 100 degrees and we had no A/C). The following week, I developed burning pain in my feet, then a couple nights later in my hands, then a few days later in my face with the metallic taste in my mouth. I've had it ever since, but it's definitely worse in times of stress, heat, dehydration, or anything else that affects my POTS. I've noticed that keeping hydrated is the best treatment. My skin biopsy was negative for small fiber neuropathy, but Mayo said that my symptoms were classic to those of SFN. I am helped by neurontin. Cool, lightly flavored drinks also help the mouth issues.