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I definitely relate to everything you’re saying too. I first got sick with CIDP during my pregnancy, then became sick with pots 2 years later. I’ve been housebound ever since and like always hoping said this is normal to my child. I feel bad about the things I’m missing out on and wish I could do and bad when I’m feeling sick, dizzy, exhausted etc and can’t interact the way I want. I do think it teaches kids more compassion though, my child can tell when I’m not feeling great and will say something nice like I wish you weren’t feeling dizzy. 

I agree focusing on the things you can do and having the same compassion for yourself that you would have for others in a similar situation can help. I can’t do a lot of physical activity but when I’m reclining in the playroom, I can do quiet things like puzzles, coloring, board games etc. so I try to focus on those things.

It’s funny you posted this, I actually just bought a book from amazon called “The sick moms guide to feeling well again”. She talks a lot about guilt, self care, finding balance and how to think outside the box to find solutions to getting things done. I felt better after reading it, and in knowing others can relate to what I’m going through. I know it’s not easy but try to remember you’re not alone and you’re doing the best you can under difficult circumstances. Good luck.

Hi,

I get this too, though mine is a more mottled appearance with red and white spots. Dr. Raj from Vanderbilt wrote a paper on this...if you google “dependent acrocyanosis” with Dr. Raj, the article will come up along with pictures of people’s legs, so you can see if it’s similar to what’s happening to your legs. 

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Hello,

You had mentioned not exercising because of tachycardia...Exercise can be very helpful but most specialists recommend modifying it to a recumbent position so as to not trigger your symptoms. Recumbent bikes, rowing machines and swimming are usually what’s recommended. I found a cheap recumbent bike from Walmart and use it 4-5 times a week. I was bedridden at the beginning and I think using this plus florinef is what helped my symptoms improve. You have to start really slow, I could only do 3minutes at first, and work up from there.  

I was on midodrine and florinef for awhile, once my BP got too high I stopped midodrine. I was on 10 mg three times a day. For me it wasn’t enough to raise my BP without florinef. 

Have you seen the Vanderbilt autonomic dysfunction website? They have a lot of information and resources including meds, exercise, research findings etc. 

I never had that, but when I first got sick, I passed out a lot. I had an abnormal EEG, it didn’t show seizures but it wasn’t normal either. My guess is lack of blood flow to the brain somehow affected the reading. My neurologist told me about convulsive syncope as DADof PotsSon mentioned, though I didn’t have that. I found that florinef really helped my syncope, as my BP was really low. Now it can run a little high at times, but when I tried lowering the florinef I started passing out again. My cardiologist said he would rather it be on the high side as a result. Have you tried any meds yet? It’s possible to get the syncope under controll or at least diminished with meds, so hopefully there’s something out there that can help you. 

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I’ve had the opposite happen, I started off with frequent syncope spells but now with florinef I don’t pass out like I used to. I think it’s a good idea to mention it to your doctor, so you can rule out if it’s related or not. 

It’s normal for blood pressure to fluctuate during the day, it has its own cycle. Typically it is lowest at night, starts to rise during the day then tapers off again in the evening. With that said, if you think it’s salt related you could try backing down on the salt a little to see if you notice a difference. It’s a definite balance, getting enough to raise your BP without making it too high. 

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I have CIDP which has caused both large and small fiber damage. I had it for 2 years before I got sick with pots, and have had pots for 4 years now. I’m mostly housebound. I’m on ivig and gabapentin so my neuropathy is not getting worse, but the areas of damage hasn’t reversed itself either. Ivig hasn’t helped my pots symptoms, they have been pretty consistent. 

I get regular IVIG infusions and now have a port, but when I used to get it from the vein in my hand, the cold IVIG used to make my entire arm ache. One of the nurses used to get me a disposable heat pack. You can buy them in the store, I think they sell them as hand warmers for camping or outdoor activities in the winter. I would put one on top of my hand where the needle went into my vein and it helped a lot. Sometimes they would also put it on my hand before they stuck me, to help find a vein. 

Running the saline slow may also help, in my case if it’s too fast I end up urinating most of it out. The saline I get after the infusion helps me the next day, but it wears off pretty quickly. Hopefully three times a week will help you feel better.

When I took lexapro, my pupils dilated extra large, I had dizziness so bad I couldn’t walk without help and my BP spiked really high too. My doctor told me to stop it, and those symptoms went away after a few days. The doctor offered me another SSRI but I was afraid to take it too. 

Have you talked to your doctor about something that can lower your BP like clonidine? Is that what the Ativan is for, to keep your BP down? There may be something else besides Ativan to try. 

I was bedridden for several months when I first got sick. I’m now housebound but feel lucky that I’m at least out of bed and able to care for myself better than I was. I tried all of the usual meds and some others off label. I tried three beta blockers before I found one that works for me. I did try lexapro but it sent me to the ER with an adverse reaction. I know others really benefit from ssri’s though. I feel I made the greatest improvement when I started on florinef and started exercising on a recumbent bike. It was really slow at first but gradually I saw some changes. My worst symptom is dizziness when upright, I can’t stand for long because of it. I definitely get worse when I don’t exercise as much, and have more trouble standing. 

Unfortunately I think it’s a huge trial and error finding a combination that works. Keep talking to your doctor and hopefully you’ll find something that works. 

Birth control pills also expand your blood volume which helps your blood pressure. This may help your symptoms too.

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It helped me a lot...more than midodrine ever did. I never had any side effects from florinef, though I did have to lower my dose at some point as it made my BP a little high. I tried cutting it down awhile ago and I passed out again, so I know it definitely helps.

Have you tried an endocrinologist? They can test the Renin, aldosterone, angiotensin system. 

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I can imagine that medical resources are limited given the ongoing conflict in Yemen where you are. Have you thought about the international red crescent society? They have doctors on staff and may be able to contact someone by phone in a different country on your behalf. Are you able to access a general doctor? They may have some ideas on how to contact others as well. Good luck, I hope you’re able to find some resources.