Clb75

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Typically your benefit amount is based on your earnings while you were working. Also, your benefits may be taxed if your household earns over a certain amount. You can withhold a certain amount each month or pay the amount when you file. You can load onto SSA and create an online account, from there you can see what your retirement and disability amounts would be. 

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Could your PCP talk with the PA or even the doctor directly? Perhaps if it came from a doctor who knows your history and is supportive of you, the PA would listen. 

Can you contact Adult Protective Services in your state? They may be able to provide some assistance. If you have no money or SSDI you may be eleigible for Medicaid in your state as well. The state department of health and human services may have resources for you too. 

Thanks for the update, I’m glad you’re seeing so many improvements! Can you tell me more about the administration...you mentioned 8 hrs, is that with an infusion nurse at home with you? 

BC pills expand blood volume so you may be feeling worse if your blood volume or blood pressure is lower than what is was while you were on them. 

I was on it for a bit and still needed to rest after lunch. I ended up skipping my second dose and just took one in the morning and late afternoon. I was on 10 mg, three times a day, but cut it back to twice a day. I never noticed any improvements to my fatigue while on it. It helped me somewhat but didn’t bring my pressure up enough so I had to add in florinef. My BP was too high with both so I cut out the midodrine. It’s always worth a try, you never know how you’ll respond. Hopefully it will be helpful for you.

No, I haven’t had them tested. I don’t think I have high norepinephrine, but my BP is ok now that I’m on florinef. You’re right, sometimes you do have to give something a try just to see how you respond either way. Thanks 

Hi all, just wanted to post an update. I tried Northera for about a week. There are different titration schedules, my doc wanted me to start at 100mg then go up by 100 each day until I got to 600mg three times a day. I am really sensitive to meds so this one ended up being really potent for me. I had a lot of side effects— nauseous, dizzy, headache, blurry vision, light sensitivity, hot, and then my diastolic BP started spiking in the high 90’s every evening. This was only at 100 mg, I was never able to titrate it up. After a week I decided to stop because it wasn’t getting any better. 

I didn’t end up in the ER like the last few things I tried so I’m thankful for that. I guess you never know until you try something. 

Welcome new members as of 11/7/18. We hope this is a helpful resource for you. Please feel free to post an introduction or on a topic that you’re interested in. 

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I had vertigo when I first got sick with pots. I had it for 6 weeks continuously 24/7. The neurologist and ent went back and forth and could never give me a firm diagnosis of where it was coming from. It finally subsided once I started getting treatment for pots. I still have a lot of upright dizziness but not vertigo. I get migraines now too, I never had them before pots. I cut a lot of food out of my diet and fortunately don’t have to take any medicine for the migraines, but I’ve heard that they are common in Pots. 

Have you seen a neurologist? They may be able to further pinpoint where your headaches and dizziness are coming from.

I have NCS along with Pots and used to faint a lot. Since being on florinef it’s improved. It used to happen at random, once I was in the shower. Other times I’ve been walking around the house or in the kitchen making lunch. Sometimes I had a warning sign like feeling sick or lightheaded and was able to lay down before I went completely out. Hopefully your doctor can find something to help you feel better.

Welcome new members as of 10/29. We hope this is a helpful resource for you. Please feel free to post an introduction or on a topic that you’re interested in. 

Have you seen a neurologist? You could have autonomic neuropathy without having pots. It’s so hard to find a good doctor, I know you must be very frustrated. 

I have a separate disorder that causes small and large fiber neuropathy. I was diagnosed by a neurologist who did a nerve conduction test and emg muscle test. These do not catch small fiber neuropathy though, you have to do other tests like a qsart or biopsy. I’m on ivig and gabapentin. There are so many different causes of neuropathy so the treatment really depends on the cause. If your autonomic speacialist does not test for this, it may be helpful to find a neurologist before your February appointment. 

I’m on acebutolol. I tried atenolol and betaxolol but this one seems to be the best for me so far. It really is a guessing game trying to find what works and what doesn’t. 

Welcome new members as of 10/22. We hope this is a helpful resource for you. Please feel free to post an introduction or on a topic that you’re interested in.

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Congrats, what a victory! So glad to hear positive news. 

Welcome new members as of 10/01/18. We hope this is a helpful resource for you. Please feel free to post an introduction or on a topic that you’re interested in. 

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Oh, thanks for the heads up. I’ll check with the doc to see what they suggest. 

Thanks for the replies. That’s a good idea about lowering the starting dose, I’ll see if I can do that. I think I’ll call my doc and see if he’ll give me a prn of clonidine to have on hand as well and hopefully keep things from getting to the point that I need the ER. I’ll keep you all posted. Thanks!

Hi, I don’t have any answers to your question unfortunately. I was wondering if you took florinef while on northera?

I just left my cardiologist who wants me to try northera, mainly because I’m housebound at this point. I’m scared to try it because I’m med sensitive like a lot of pots patients. The last two meds I’ve tried have sent me to the ER. I’ve read all the past posts from people on Northera but wanted to get some feedback to see what people think of it currently. 

I’m also confused about how an increase in norepinephrine from this drug will interact with the sympathetic system. Won’t it make BP and tachycardia worse? 

Also, to anyone who took or takes it, were you able to take it with Florinef? 

Thanks for any input you all can offer!

I took atenolol when I first got sick. I was really woozy and had dizziness that was different than the being upright kind of dizzy. The woozy and fatigue feelings went away after a few weeks but not the dizziness. I switched to betaxolol then to acebutolol which I’ve been on for several years now. It really is a trial and error process to find what works best. Hopefully you’ll find what works, hang in there.