Clb75

I’ve been taking florinef for 5 years. It’s been really helpful for me and I’m still getting a benefit from it. I have NCS too, so it helps my syncope and has brought my BP up. I’m still dizzy when upright and housebound, but I was bedbound before. 

Trying,

I have something called CIDP, it affects the nerves that supply the muscles. At first, my arms and legs were heavy, my toes paralyzed and my hands were so weak I couldn’t button my pants or push buttons on the microwave. Grip strength was lost too. I also have numbness in my hands and feet. If you’re daughter is interested in trying a neuromuscular neurologist, they can do nerve testing to see if there is any motor nerve damage. Myasthenia Gravis can cause problems like this too, but for a different reason. Have you all considered a specialty clinic like a major university or Mayo, etc? I had to go to a university hospital to get diagnosed. It’s frustrating to find answers but keep trying and hopefully you’ll get some answers. 

I have a neuromuscular disease that causes motor and sensory nerve damage. When I first became sick with it, I would get weakness in my arms and legs, and my legs felt really heavy. I couldn’t walk up the stairs because I couldn’t lift them. This is separate from Pots. Not sure if you’ve been to a neurologist, but it may be worth it to rule out any neurological issues contributing to symptoms. 

I’m not sure about the rashes, but the burning could be part of the neuropathy. GBS is usually pretty sudden, but some of the others can come and go in the beginning. I think it’s because the nerves demyelinate, which causes symptoms, then they remyelinate and the symptoms temporarily go away. If you responded to ivig it may be a diagnostic clue to help rule in or out some diagnoses. I understand though if it comes and go, you can’t really be sure if it was ivig that helped or not. A neuromuscular neurologist can do nerve conduction tests to see if it’s large fiber damage and which nerve is affected. Small fiber damage doesn’t show on those tests so you may have to do a biopsy. If it is a neuropathy variant, I would try to get tested sooner rather than later to help prevent further nerve damage. Good luck.

I have CIDP which some consider to be a chronic form of GBS. The symptoms you describe sound similar but the paralysis is usually symmetric on both sides of the body not just one side. There are a lot of variants though, some forms of neuropathy only affect one side. Have you seen a neuromuscular neurologist? They may have more specialty knowledge about neuropathy than a regular neurologist would. You mentioned being treated for GBS, did you get ivig or plasmapheresis? How did you respond? If you responded well, it could be an autoimmune process similar to GBS. I had to go to an academic center that specialized in neuromuscular disorders before I got diagnosed. I know it’s challenging, but keep trying different doctors and hopefully you’ll find some answers. 

I had trouble getting it last month too. I would be in much worse shape without it. I haven’t heard anything about the shortage or when it will be over with. I hope your son will find it somewhere. I had to keep calling different pharmacies until I found one that could fill it. 

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The CDC has a link to this you can read on their website. I think Dinet’s homepage has a link to it too. It basically says that there were around 20 or so case reports of people getting pots after getting the HPV vaccine. They consider it safe though because out of the millions of people who got the vaccine, only 20 something got it so they don’t think that’s enough to prove a causative link between the two. So the CDC is recommending it. Obviously those people never had pots! I’m with you, I think it’s still too new of a vaccine and needs more long term research. I would hate for my child to be one of the few who got it even if the risk is low. 

It’s been awhile since I went to Vandy, but I believe they only schedule you for the autonomic clinic and not necessarily other clinics at the same time. If you want to look at the whole picture with a bunch of specialists at once, I think Mayo does that more than Vandy would. 

My chloride level is always slightly over the normal range. I was told this can happen if you consume a lot of salt. 

I started at 0.1 once a day, at one point went up to twice a day, now back at once a day. It’s been really helpful for me. Recipe is right, you do have to up your sodium and water for it to work properly. Hope it helps!

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In general, electrophysiologists are the type of cardiologists that treat dysautonomia rather than say a general cardiologist or interventional cardiologist because EP’s treat the symptoms most common to dysautonomia such as dizziness, syncope, tachycardia etc. Autonomic neurologists also treat dysautonomia but appear harder to find in a lot of cases. 

I’m sorry you’ve both had negative experiences with EP’s and TTT, but I think that is more specific to the individual doctor than the field as a whole. In my case, I’ve actually had the opposite, I’ve had an overall positive experience with my current EP and the two TTT’s I’ve done. I think it is so specific to each person, and you really have to do your research when seeing a new doc and keep trying to find a new one if the current one isn’t working out. 

I had continuous vertigo 6 weeks straight when I first got sick with pots. I remember I did have an abnormal eeg at that time but it wasn’t enough to say it was a seizure disorder. 

Electrophysiologists are the specialty type of cardiologists who typically treat dysautonomia. You can make some calls to local offices and ask if their doctors treat autonomic disorders. 

I’m unfortunately on the opposite side...I’ve been on ivig for 7 years for a separate autoimmune illness, and it did not prevent the onset of pots nor has it improved my current pots symptoms. I think it’s really specific to the individual and what the underlying cause is. 

I wouldn’t quit, I think you have a stronger case for disability if it shows you were fired because of your symptoms. i Would start keeping notes for your specialist, like vitals, time you can stand before you’re dizzy, all the things you can’t do etc. this information can show them that despite treatment, you’re still symptomatic and give them a better sense of what your limitations are. At the next appointment, she may have a better sense of what to recommend, especially if you have data to back it up with. Good luck.

When I first got sick with Pots, I had an acute attack that landed me in the ER. My troponin was elevated and my ekg was abnormal. They told me tachycardia can cause elevated troponin. If you’ve been sick and more symptomatic maybe that caused a change. Perhaps you can follow up with your regular doctors who know you better than the ER doctor and ask their opinion for peace of mind. 

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Has anyone had trouble getting florinef? I tried to pick it up today and was told there’s a shortage. Only two manufacturers make it, one is temporarily unavailable and the other is on back order. I’m a little concerned to hear that and was wondering if others had run into this? 

Thanks

A lot of pots patients experience dizziness while having normal vitals. It’s a mystery! I have dizziness like this too where I’ve been housebound for several years. Sometimes it’s presyncope, sometimes just not enough blood getting to my head but not to the point of passing out. Typically my vitals are normal when this happens. Reclining is the only thing that helps me, but I’m also doing salt, fluid, meds, exercise etc or it would be much worse. It’s hard finding things to help improve symptoms, so keep trying. Hopefully you’ll find something to help improve your symptoms.

The homepage for this site has a brochure you can download and print. Also the dysautonomia international site has information for doctors as well. Good luck, I know it’s hard finding a new team of doctors. 

When I was bed bound, I would sit in a folding lawn chair and put a floor peddler in front. I slumped down as far as I could in the chair because I could barely sit up at that point. I started peddling for 3 minutes. Eventually I was able to work up to 30 minutes and switch to a recumbent bike. You have to start really slow, but everything helps. 

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Neuropathy is very common in sjogrens, and autonomic dysfunction is common in sjogrens too. I agree seeing a specialist for POTS is a good idea, if you can’t find one then a cardiologist who is an electrophysiologist may be more familiar with POTS than a general cardiologist would be. 

Florinef is very helpful to a lot of people. You do have to drink a lot of water (over 1 Liter a day) and increase your salt ( 3-5 Grams of sodium or even more) for it to be effective. Even if you’re not on florinef, many people benefit from the increase in fluids and salt. There are other meds to try , unfortunately it can be a bit of a guessing game but there are some options. 

Has anyone mentioned exercise to you? A lot of specialists recommend starting with recumbent forms of exercise. A recumbent bike or floor peddler is recommended a lot because it allows you to exercise while in a seated, reclined position. The idea is to start slowly then increase your time bit by bit. If you can access a pool, swimming is also good because the force of gravity is less and it’s easier to move around without getting dizzy or triggering other symptoms. For some people exercise can help improve symptoms but you have to go slow and not over do it. 

Hopefully in time you’ll see some improvements.