Clb75

The white spots along with the red or purplish mottled appearance on the hands and feet may be what Dr. Raj refers to as "dependent acrocyanosis". If you google his name and the term, a picture comes up. This is very common in Pots patients and he says it has to do with blood pooling and the way the blood flows under the skin.

I guess Florinef can do that. I used to take 2 pills a day then had to go to one because my bp kept climbing too. When I tried to cut it to half a pill, it got low again and I passed out so I had to go back to a full pill. A very fine line!

My bp can roller coaster as well. I'm 90/60 without Florinef, but with it I'm in the 130-40's over 80-90. My bp will spike much higher than this at certain times, like Kim said the master control is broken. Things that normally raise it a little will really spike it, like stress, exercise or new meds I'm trying for the first time. I've been in the ER several times for a hypertensive crisis from meds that don't even usually affect bp. I have to take an IV steroid at my Ivig infusions, and the first time I took it at half the starting dose, it still spiked my bp 20 points! It took 3 months to work to the normal dose. I've tried lowering the Florinef dose, but I started passing out again so I had to go back to the regular dose. My cardio said it's common in pots for bp to swing back and forth, it's not always consistent for everyone. It still doesn't make it easier to deal with. Hopefully you figure out some answers!

HI, I can definitely relate to what you're going through...Dizziness and fatigue are my main problems. I have been housebound for three years as a result. I have about 20 minutes upright before I get dizzy, and even less if I'm standing or sitting upright. I had to retire from work and no longer drive. Not driving is a huge problem, everyone I know is working during the day so it's hard to find a ride. I ended up hiring a caregiver who drives me to doctor appointments, helps me pick up my daughter from school and run occasional errands. If I'm feeling too dizzy to walk, she'll push me in a wheelchair or can help how ever is needed. If I'm really in a bind, I've taken Uber a few times. I have to ride in the front and recline the seat which is kind of funny, but I just tell them I have a medical issue and it seems to be ok. I hope things improve for you, I know it's scary when you can no longer do the "normal" things you used to do. I really struggled with that at the beginning but found that I had to find a way around it and come up with different ways of getting things done. Not much has helped with my dizziness. I've been on so many meds, but feel that florinef has helped the most along with exercising on a recumbent bike. If I don't do these things I'm dizzy as soon as I sit up. My bp isn't always low either. Have you tried anything besides midodrine or northera...I think you said you were trying those in an earlier post?

I've been on Ivig for 5 years now, it can be a very difficult treatment with a lot of reactions or side effects. Are you taking Benadryl as a pre -med? Some people have allergic type reactions and this can help-- not sure if that's what happened with you but the tightness in your chest and trouble breathing made me think of it. Flu like symptoms are a pretty common side effect, particularly at the beginning. Ivig can cause the lining in your brain to swell, which in turn causes severe headaches, migraines or aseptic meningitis. Head pain, neck stiffness or pain and fever are signs of this which sound similar to some of your symptoms. They can give an IV steroid at the beginning of the treatment if one develops headaches during the infusion, or even after Ivig is done if you get them after the infusion is over. I get migraines a few hours after I'm done, so I get the IV steroid (solumedrol I think) at the end of the infusion which helps after I go home. Also, Ivig is like oil in your blood so drinking tons of water is very important. I drink 6 glasses starting 2 days before, drink several glasses during the infusion and a few more once I'm home, then 6 more the day after. I also get a bag of saline after Ivig which helps to dilute it as well. Keeping the infusion rate low helps with side effects too, though if you're at 50 that's pretty slow. There's a magazine and website called "IG living" which I've found to be a great resource on all things Ivig, you can google them if you'd like. Lastly, some people switch to a different brand and may have better results, though for some diagnoses only certain brands are approved so check with insurance. Not sure why you're getting it, but plasmapheresis may also be an option. This is a serious treatment as well, so hopefully they can figure out something with Ivig. Good luck!

With anxiety, your symptoms would be consistent no matter what position you are in. They would not change or get worse when in an upright position, then get better when lying down.

Dr. Raj wrote an article on this for Pots, he calls it dependent acrocyanosis. If you google it, you can see pictures that are very similar to yours, though it appears to be more common in the legs.

I've been getting Ivig for a little over 4 years now for cidp. I've never done sub q but from what I understand it is only approved for certain diagnoses, like immune deficiency disorders. Insurance will likely make you go through a case review to approve it if your diagnosis isn't one that is fda approved to use it with. I've read accounts from others using it that it has to be infused more frequently, like a couple of times a week rather than once a month, depending on the dose. It seems to help cut down on the side effects like headaches too. I read a magazine called "IG Living", (you can find it online too) that has a lot of great info on Ivig, infusion matters, chronic illness, etc. Hope you get it approved!

Actually I should clarify that I have Axonal nerve damage which can't be reversed, but some damage that is purely myelin may be able to come back. It depends on the person, and how bad the damage is. I was also told that motor symptoms respond much better to Ivig than sensory ones do, so in my case I regained a lot of strength back but my hands and feet are still pretty numb. Hopefully you'll see improvements with Ivig.

I was diagnosed with CIDP four years ago, the developed pots two years ago, possibly from the neuropathy in my feet. Unfortunately it takes awhile for CIDP to get diagnosed because the full symptoms aren't there until it's had some time to brew. I've had a good response to Ivig but it doesn't reverse the nerve damage you already have. Motor symptoms seem to respond better though than sensory stuff. If you haven't been told already, drink lots of water several days before, then during and after the infusion to help cut down on side effects. Also, there's a magazine called IG living, and their website that has great info on Ivig, disorders that it's used with and info on chronic illness in general. Good luck!

I haven't noticed any side effects, I've had it a few times and seemed to do ok so far. Hope everything goes well for you!

I had a root canal done today, and used the anesthesia without the epinephrine in it. I'm always afraid it will increase my heart rate, BP etc so I think it's better for me personally. The only thing is that these shots wear off quicker than the ones with it, so you may need to get a couple to make it through. I think for wisdom teeth though they usually put you under local anesthesia so you're not awake. Let them know about your medical history so they're on the same page. I'm usually really sensitive to meds, and when I had a local for a different type of surgery, I had them start at a low dose then work up from there.

I have to take an afternoon nap, typically for an hour or two also. When I was on midodrine, it was prescribed three times a day, but I skipped the second dose so I could sleep. Since each dose is short acting, I figured it was a waste to take it while I was sleeping, and wanted to save the effects for when I was up and needed to move around. I took the last dose around 3:00ish, which lasted through the early evening but out of my system in time for bed.

There are two types of TN, one is called atypical which presents as a more constant pain instead of coming in spurts. It may be worth checking with a doctor about it. Typical pain meds won't help with nerve pain, you usually have to take something like an anticonvulsant--gabapentin, carbamazepine etc to help with that type of pain. My grandmother had TN and wasn't helped by meds or the surgery so I can imagine how painful it must be for you. Good luck!

I can't remember the dose I took, but it was whatever the starting dose is, and I believe I took it in the morning. It dropped my BP by 10 points, bottom number only, so I was around 90/60's. This was at the beginning before I was on Florinef, midodrine, fluids and salt etc. Have you taken it yet? I think you'll know pretty soon if it's working or not, hope it works out for you.

I've been on acebutolol for 2 years now. I tried atenolol first which made me really dizzy, then I tried betaxalol which was too mild and didn't help enough. Acebutolol has worked really well for me. I haven't had any problems with it, though I have with other meds i've tried. I can't remember how long it took to work but I don't think it was that long. Good luck!

Have you tried increasing salt from high sodium foods? Instead of dumping salt on all of my food, I try to eat combinations of higher sodium foods. one of my favorite go to's is a turkey sandwich for lunch. Two slices of whole wheat bread have several hundred mg of sodium, plus 2 slices of deli meat have about 600-800 mg. add cheese, pickle plus any condiment and it adds up to almost 1,000 mg . This is about the same as a salt tab. I also like stir fry veggies with a sauce. I find Asian style sauces to have a lot of sodium like soy, pad Thai, curry, chutney etc. marinara and salsa have a lot too. Frozen foods and canned beans or veggies have a lot too. I buy my stuff from whole foods so it's on the healthy side, and try to incorporate these things with fresh fruits and veggies since I have other auto immune issues. I tried salt tabs, and they bloated me so bad that I had to drink so much water to flush it out. Then I wasn't hungry when it was time to eat. I was worried I was only eating salt! I started to feel better when I started eating food this way, and Florinef helped me hang on to the sodium and fluids whereas midodrine did not.

When I applied, my attorney had me go to all of my doctors for an office visit so we could have the most recent examination of all of my symptoms documented, and also had my doctors complete a residual functional capacity form detailing my limitations. He told me disability has to go by your doctor's opinion first, then will default to their doctors only if they don't have enough information to make a decision. The more information you can provide the better. I was still denied the first time of course, but won the appeal. The lawyer's reason for the appeal was that their denial did not match the medical evidence we had submitted. Getting an attorney is well worth it even if they take some of the back pay because they know how to navigate the system.

I tend to get a mottled red and white appearance on my feet and legs shortly after standing or even when I'm sitting without elevating my feet. This can be common for pots. Dr. Raj wrote an article about this, I don't have the link but you can google "dependent acrocyanosis pots" and his article will pop up along with a picture. Not sure if it's the same thing that's happening with your legs but thought I'd mention it in case you'd like to take a look at the article. In my case I've found that wearing compression tights and elevating my feet tend to help it.

I try to eat organic veggies and fruits etc. and cut out the processed foods because of an autoimmune disease I have before I got sick with pots. I try to combine high sodium foods with healthy ones so I don't load up on fast food or other junk. Tomato products like marinara or salsa are high in sodium. I'll make an omelette with cheese and veggies then add a little salsa on top. Pasta with marinara sauce, then add veggies to the sauce. Artichokes, olives, and sundried tomatoes in a jar have lots of sodium. I also like canned beans, like garbanzos or black beans. Last night I had a black bean burrito grilled on a George Foreman grill. I used a whole wheat tortilla, beans, salsa, spinach and cheese, which combined together have a lot of sodium. I also like doing veggie sir fry (or steamed) with brown rice. I then add a sauce to it which has high sodium. There's a mango poppyseed sauce I like to use, and also Asian/Indian foods have a lot of high sodium sauces like pad Thai, soy, curry or chutney. For a snack, I love hummus and will cut up apple slices with it or eat tortilla or pita chips. Natural food stores have different types of chips made from things like spinach or quinoa, so it's a little healthier than straight potato chips. Coconut water has sodium and potassium in it too. Cereal like Raisin Bran and granola are higher in sodium as well. Even though it's more expensive, I try to buy a lot of food from the natural food store where I can find healthier alternatives to food I was eating before I got sick.

I've found that If you try to combine high sodium foods together you can get a higher Intake without having to smother everything in salt. Tomato products like marinara sauce or salsa have a lot of sodium. Deli meats and bread together to make a sandwich have a lot plus a slice of cheese, and pickles if she'll eat those add more. Breads and cereals like Raisin Bran or granola too. She may not eat them, but Asian style sauces like soy, pad Thai or curry have a lot. I try to mix them with something like fresh veggies. Hummus with pita chips or corn chips. Frozen foods tend to have a high sodium count too. Does she like Gatorade? I add salt to the lemon lime flavor and it hides the taste. I know it's hard with a toddler because they need milk and nutritious food as much as possible. I try to combine the high sodium stuff with veggies and fruit to balance it out so I don't load up on junk or fast food. Good luck.

I developed another autoimmune disease called cidp (which causes nerve damage in the hands and feet) during pregnancy, then postpartum developed blood pooling in my legs. I also had an emergency c section and another surgery during my delivery. I was on ivig two years when my pots symptoms developed rather suddenly. I have now had it for 2 years am am housebound. In my case, ivig did nothing to prevent the onset of pots nor has it done anything to help my current symptoms. It may be in my case I don't have an autoimmune form, or maybe it is and ivig isn't the correct treatment for it, just as there are many other autoimmune illnesses that don't respond to ivig but can be treated with other meds. Do you have an option to try ivig?

Thank you so much! I always thought there was a connection, but like you was told there wasn't. I hope your girls find some relief now that they are getting treatment.

I've had pots for about 2 years now. I had a sudden onset which sent me to the ER on a Friday, then that next monday I was back for a sudden onset of vertigo which lasted for 6 weeks straight and was continuous. It finally cleared up on its own and I haven't had it since. I bounced between a neurologist and ENT, both of which couldn't decide what the cause was. My vestibular testing came back negative, but the neurologist thought the nerves of the inner ear were affected somehow. They both told me it wasn't related to pots but I think it has to be connected somehow. Meclazine didn't help much, nothing really did I guess, but I think once I started to get pots treatment it helped overall. I also was having ocular migraines at this time- no headaches but constant pinpoint flashes of light. They have diminished with pots treatment too. Hopefully once their overall picture starts to improve it will help decrease their symptoms.

My husband had a leak from a spinal tap once along with a severe headache and had to get a plug to patch the hole where the leak was from. I forgot the whole process but it was done by the people who did the spinal tap. Also I think they sometimes give a caffeine IV for this too at the ER.