KiminOrlando

I have hypoPOTS. It didn't help my POTS at all and I gained weight so fast I would wear clothes, wash them, then put them on again, but they wouldn't fit. It was like they weren't ever my clothes. It was only a two week span. I gained 30 pounds in 3 months. It was shocking. The same thing happened to my aunt. It wasn't all fluid weight either. It took years and bad gastroparesis to lose the weight. Keep a careful watch on this drug. Kim

Short answer, NO, it does not make you weak. The people that are making the rules have never been in the situation to deal with chronic pain, so it is easy to say just deal with it. I have Rheumatoid-arthritis and am currently in a flare. I am having a hard time using my arms today. If I had a narcotic today (or last night) I would have gladly taken it, but I can't get them. I didn't sleep until 7 am because of pain, then woke up at 10:30. I'm exhausted but hurt too much to be able to sleep. Take the pill if you need it. I hope this 'no pain meds' fad passes soon. It is torture.

How did your PCP rule out Rheumatological diseases? Do they know how to **** sero-negative lupus and sero-negative Rheumatoid arthritis? Did they just see your bloodwork wasn't positive so you don't have it? As someone who was sero-negative RA for years, undiagnosed, undertreated and consequently has lung damage, I will tell you that no one but a board certified Rheumatologist should make that assessment. And to be honest, it may take a couple before you find one that can treat these nebulous autoimmune diseases. Some doctors don't even believe in the concept of sero-negative rheumatological diseases. A lot of research is being done in this area. There is also something called Mixed Connective Tissue Disease and Undifferentiated Connective Tissue Disease. Both need to be diagnosed and treated by a board certified Rheumatologist and some doctors dismiss them as not real, but they do irreversible damage to your body. I don't mean to sound harsh, but it really bothers me when PCPs try to diagnose and treat Connective Tissue Diseases. It is such a complex area of medicine that is evolving every day. All it tends to do is deny patients pain relieving treatment that ultimately results in a decreased quality of life now, and permanent disability in the future. I hope you find a doctor that can help you and you find answers. Kim

Stairs are very difficult for me too. I have never checked my heart rate, BP or O2 after climbing them though.

I have been on florinef for 10 years and take Aleve twice a day for 8 years. I also have gastroparesis. No problems and none of my doctors are terribly concerned about this.

Tell your dysautonomia doctor. My temp can run low for no apparent reason too, but not that low. I think they just need to know and put it in your file. They didn't do anything for me. It will be interesting to hear what they tell you.

Pernicious Anemia is brutal. B12 deficiency can turn in to that. As someone who dealt with it, I would be careful. Either get a second opinion or if you stop the B12, hopefully they will retest in a month or two so you can see if/how your body uses it. Maybe that is the strategy, stop the med and see what happens, then determine what is needed from there. Good luck.

I drive 6 1/2 hours to my POTS specialist. It is worth it, even if you just get diagnosed, then see them once a year to oversee your local doctor. Did they check your ANA? Some of the stuff you are talking about are common with autoimmune diseases and autoimmune can run in tandem with dysautonomia. Maybe your primary would run that blood test to see if you would benefit from seeing a Rheumatologist. Get a copy of the bloodwork though. Sometimes they tell you it is negative when it is inconclusive or mildly positive. Your symptoms sound like mine early on. It took me a long time to find someone who could help me. Don't give up.

Did the neuro do a standing MRI with flex to check that area of your neck / brain stem? I would still try a Rheumatologist for the joint issues. Don't give up.

@blizzard2014 Yes, it sounds like you should see a gastroenterologist. I had a similar problem. Then when you have to eat the glowing eggs, try to schedule it for a day that isn't right after you empty. Have you been able to find a pattern? I had a pattern somewhat.

@Pistol That sounds like gastroparesis. I threw up spaghetti the next morning. When I bent over to pick something up, stuff came up. Yuck! Glad it is under control now. I highly recommend the compounded med if your doc will write for it. It isn't FDA approved but is widely used in Canada and in Europe for decades. Let me know if you decide to try it.

I agree with @StayAtHomeMom These meds are rough, so eating the glowing eggs should happen before trying them. I have gastroparesis and my doctor put me on the compounded med. It changed my life! If it ever stops working, well, that is simply unimaginable. If you fail the glowing eggs test and you try the compounded med and it works, send me a PM. Don't be afraid of the med. It isn't perfect, but life is so much better. Kim

I agree. A doctor change should be considered. Some have personal biases and do not agree with the disability system. It shows in their assessments. I had one of those. Emphasis on HAD. You don't have to leave the current one until you try out a new one, but it doesn't sound like you have much to lose. To be honest, I would hate to know you were driving a truck on the road with me. There is a lot of risk here. Sometimes you have to fight the system and it stinks you have to do it while you are fighting a chronic illness. I hope you find a more engaged doctor. Good luck!

I would see a neuro or Rheumatologist to get an assessment first. They will refer you to PT after they make sure nothing medical is going on. Hopefully, all that you need is some PT, but I wouldn't trust a PT to make a medical evaluation unless you have no money to get a medical opinion.

I take metoprolol extended release 50 mg. I was told to take it at night because it makes you tired. I've been on it for so long, I don't know if that is still true. I've been gaining weight steadily, so I can't attribute that to the beta blocker. Too many other variables. My resting heart rate is in the upper 90s on the BB. I never tried another BB because my POTS EP said this was the best one and went straight to it. My vote is that Metoprolol XL is certainly worth a try. Hope it works for her. Kim

I'm not a doctor, so I defer to their expertise. I can only tell you what happened to me and the theory as to why. Northera is also known as Droxydopa. Droxydopa converts to norepinephrine (my understanding). My natural norepinephrine was low, but not terribly low. They thought my receptors were damaged (example- only catching 25% of the norepinephrine tossed their way). The fix was to throw more norepinephrine so that even with it catching only 25% the actual amount went up. It started ok. I got up to 300mg (max is 600mg), but instead of staying steady, I would spike a BP for 15 minutes that was at stroke level. It wasn't every day, but it was enough that they decided not to play with it. They retested my norepinephrine and it was high, so they know for a fact the Droxydopa impacted my norepinephrine levels. In me they found that there was a variable they couldn't account for. Did my body start making more norepinephrine in addition to converting the Droxydopa? Does my norepinephrine level go up and down randomly so Northera dosing is impossible? Did Northera do something to my receptors to make them start to work better? I would encourage you to get a good BP machine and a notebook to write your numbers down. I checked it in bed, sitting, and standing, three times a day every day and logged how I felt and what I had been doing that day. If I started having episodes or weird symptoms, I checked BP and logged it too. Most likely this log will be something your doctor can use to justify further treatment and let them know when it is safe to increase dosage or when you have attained the correct levels. I'm glad I tried Northera even though it didn't end up working for me. I hope you have great luck with it.

It is supposed to make more norepinephrine, and too much norepinephrine is a problem. Do they think your receptors are damaged and that is why your norepinephrine is normal but you are still having problems? I think in your case they will likely have you monitor your BP and keeping a log multiple times a day. Maybe someone else with normal norepinephrine can share their experience. Good luck with Northera. I hope it works for you and I'm glad money isn't going to be a factor in accessing it.

Is your norepinephrine low? If your norepinephrine is not low, I don't know if it will help. I tried it and it was great for a while, then something changed with me and I started having BP spikes. They took me off. I did feel better on the drug, energy, brain fog, tachycardia, everything, but BP spikes are scary and strokes run in my family. I miss how I felt on that med. The odd thing that they can't explain is that my norepinephrine never went back down to its previous lows. It was like doing a reset to your adrenals with a corticosteroid except this makes no sense. My 'results' were reported back to the company in case someone else has a similar reaction and it bears further study. Midodrine didn't work for me at all. It gave me debilitating headaches- the kind where you go to bed in a dark room, holding your head and don't leave for days. It took me 4 days to figure out it was the midodrine. I would rather be tachycardic and semiconscious on the floor. The med is very expensive and this seems to be the stumbling block for most people. Even with insurance coverage, it is typically considered a tier 5 specialty drug and you pay a percentage of its actual cost. I had been approved for financial assistance or I could never have afforded it. That program has since been terminated. Just to give you an idea (maybe you already know), I think I was able to get some numbers and the best I could tell, it looked like that med was roughly $50k US per year. I would be interested to find out what numbers other people found. This is the total price- what insurance plus patient pays. I hope this med works for you and you are able to gain reliable access to it.

I think I remember you telling me that. It sounds like something is brewing though. Waiting for it to erupt is so difficult. Hang in there.

Any chance that Dermatologist would be ready to do a punch biopsy of the rash? Long shot, but worth asking, especially if they were reminded of your family history with autoimmune. Might lead you to some answers regarding those autoimmune issues. Or, they might want to wait it out. Hope you get one that wants to be more proactive. I know what it is like to want answers.

Please check that again with your doctors. I take methotrexate and was told 3 months, not 3 years. I don't think the waiting time is going to be the biggest problem. So, maybe this is good news?

This is why I avoid tumeric. Same concept. I don't know the answer though.

We make small adjustments gradually and think it doesn't matter. We go on with our 'normal' thinking it IS normal. Then you come face to face with true normal and it is startling.

Good. All I can tell you is that I used to have an excellent OB that knew a little about it. She told me for my case I would likely have to be on bed rest the moment I found out I was pregnant. I never had children, so I never went through it. Have you talked to your pharmacist about pregnancy and your meds? Sometimes they can be a good resource.

Every beep means you are that much closer to getting a diagnosis. These beeps are affirmation that this is not all in your head and you are doing the right thing. You have taken a proactive step to make your life more manageable. "Beep away little machine. You are about to get me the help I need to live a better life."