janiedelite

I had to take carvedilol with it in order to keep the chest pain and pressure away. It also served to keep the jitteriness down as well. I'm extremely sensitive to any stimulants, so I only take midodrine if my BP is running low and I can't get it up any other way.

I'm getting it delivered TOMORROW! I'm not looking forward to the GI side effects (really bad cramps and diarrhea), especially when it's first started. My cardiologist prescribed 200mcg twice a day. I'm probably going to start at 50mcg just until I can get over the initial side effects.

I do have a continuous level of symptoms (fatigue, nausea, abd pain, headache, flushing, etc), but they are definitely worsened with meals. I'm hoping the octreotide will help.

It's good that you had the small bowel follow-through. I've had that as well when Mayo thought I may have an obstruction.

To clarify, a GI motility study is when you eat a radioactive meal (often an egg and bread), and they take pictures at timed intervals over a few hours or days to follow the meal through your GI tract. If your stomach (or like my case, small bowel) is slowed, this is the test that would detect it.

There are medications like domperidone or erythromycin that can help treat motility issues.

I'm certainly not saying that you need this testing, but that your symptoms did sound similar to the symptoms of someone with gastroparesis. Best wishes!

Have you done a GI motility study? Perhaps you have delayed gastric emptying?

Perhaps you could continue to try different meds (like florinef, mestinon, ddavp, etc). You may get more symptom relief that way. Here's the list of various meds/treatments:

http://dinet.org/what_helps.htm

BellaMia, I'm sorry to hear of your worsened debilitation. You have such sunny, encouraging posts, and it's hard to imagine that you rarely get outside to feel the sun yourself anymore. I agree that it would be helpful if you could have follow-up doctors appointments by Skype for those who are very disabled. Wouldn't that be great?

When I was taking gabapentin, it's a med that I would slowly wean onto and slowly wean off of. I started with 300mg/day and increased every 3 days by 300mg increments up to 2700mg/day (which is quite a bit). But yes, it does make me feel REALLY relaxed, especially when I'm working up on dosage. After a week or so on that dose, the relaxed feeling goes away mostly.

I'm sorry to hear about the migraines. It sounds like you may benefit from seeing another doctor as the one you're seeing hasn't been very helpful.

I took magnesium for several days but, even at low doses, I had more fatigue and flushing.

That's a great idea, to have your friends/family write letters about how your illness affects your life as well as how productive you were prior to illness compared to now.

For me, I didn't need a letter from my doctors about disability. I had seen so many doctors, had proof of all of the appointments and needed therapy visits, even documented phone calls with doctors, testing from Mayo proving my illness, and had been sick for over 3 years by the time I was approved. Documentation is key, and the volume and quality of your documentation really counts.

I had a really good collaborative relationship with my primary care doctor, who knew me before I became disabled. This helped because her visit notes were always so kind, supportive, and the judge said that after reading my doctor's visit notes (from all docs - over a dozen), she could tell that my doctors all believed and respected me which went a long way toward making the judge believe me.

I just asked about neuropathy because it often is worse at night and small fiber neuropathy sometimes starts with itching (which is actually a pain response).

You may want to be careful with the hot baths because the heat can cause vasodilation, which can further lower BP or raise HR.

I was tested stomach through colon. My stomach emptied rather quickly, but my small intestine was very slow. Colon was borderline slow. The testing took 10 hours and they were going to have me come back the next day if the food hadn't reached the colon by then.

I feel ya, Issie! I did feel emotionally "on edge" while I'm taking midodrine too, but thankfully nothing like you described.

Most helpful: plain old benadryl

Looking forward to trying: octreotide

Could it be neuropathy?

We had some luck with going to the actual department where the testing was being done and seeing if they could fit me in on that day. That's also how I was able to see my Mayo doc for an unscheduled visit before we left Rochester. We waited in his waiting room all day and he saw me at 5:30pm. It's better than having to travel again.

Have you tried mestinon/pyridostigmine? It may be helpful for you because it's supposed to work more when you are upright, and not so much when you're lying down (at least according to my Mayo neuro).

I get chest pain with midodrine, or any type of stimulant. My troponin became high when I was on mestinon and developed chest pain, so it's always good to get this checked out, especially if it is new or worsened suddenly. If I'm taking midodrine, I have to take my carvedilol with it (an alpha-beta blocker). I've read someone else on here who takes clonidine with midodrine. It seems counterproductive, but I do get some energy from the midodrine but the carvedilol reduces the chest pain. I don't take either midodrine on a regular basis, and only 2.5mg when I do need it because of the chest pain that results for me.

It may be good to run this new symptom by your prescribing doctor today.

For me, my fatigue comes and goes somewhat of its own accord. I liken it to a blanket. I never know when it will lift or return. Sometimes it lasts for months on end. I was on carvedilol which really helps with my chest pain in the winter, but makes me much more fatigued in the summer so I only take it as my chest pain requires. Perhaps another beta blocker will help with your heart rate and reduce your fatigue?

Also, I've found that I pool in my abdomen quite a bit so I eat less simple sugars, more protein, and small frequent meals which helps with the fatigue.

My neuro did try me on Provigil (at $8/pill) but it made me feel really wired and then I crashed 8 hours later and was much less functional than normal for a couple days. Midodrine has been really helpful for some folks for fatigue, even those who have POTS without OH. Also fludrocortisone/florinef has helped some folks with fatigue as well.

It was suggested that I take calcium channel blockers for my raynauds/pernio issues in my feet, but they the doc realized it would only worsen my OI. It sounds like you already have excessive blood flow in your extremities, so I wonder why the doc thought a calcium channel blocker would be helpful?

My personal theory is that it takes awhile for my body to vasoconstrict normally in response to being upright. Many folks here have their worst OH first thing in the morning. Can you take your time getting upright? I like to have the house pretty cool in the morning and I expose my legs to the cool air for awhile to facilitate some vasoconstriction. Sometimes I put my compression on before I get up too. Another thing that has helped with vasoconstriction is spraying cool water on my feet and lower legs, and even placing them in front of a fan before I get up. For me, the compression hose can be helpful because they tend to soak up the water from the spray bottle and keep my legs cooler.

http://dinet.org/links.htm

Here's a couple of studies done that validate disability associated with POTS. Hope it helps.

It is interesting, Rama, that you noticed a correlation between success on mestinon as well as midodrine. I wasn't able to take either med. They cause worse high BP and chest pain, and the midodrine worsened my pernio/raynaud's. Also, I know the midodrine only lasts a few hours in our bodies, but I'd have hyperadrenergic side effects for a good 24 hours after taking just a 2.5mg dose. I can't tolerate any stimulants, caffeine included. I often feel fabulous after I try a bit of coffee or a small dose of midodrine for the first hour after taking it (really awake), but the chest pain, fatigue, nausea and palpitations that follow aren't worth it.

Sue1234, your list of trigger foods are also foods that are usually high in amines (histamine, tyramine, etc). My mom is on a low-amine diet because amines trigger her carcinoid syndrome symptoms (diarrhea, abd pain, flushing, etc). She can't tolerate sugary food either for the same reason. I know you've thoroughly investigated neuroendocrine tumors already though!

Hope is powerful medicine! I'm so happy that you finally have a doctor on YOUR side!