hholmes13

I did the Midrodrine beta blocker (nadolol) combo for a little over a year. It seemed to work okay for me, but my problem was the beta blockers seemed to work too well. Even just taking a 1/4th of a pill (~5mg) my hr would go down to 38. We finally took me off the beta blocker last summer when I started Mestinon.

Leigh8 I built up to one 60mg tablet 2x each day. I started with a half tablet and added an additional half each week. I am allowed to take it up to 3x per day but since twice worked, I didn't want to push my luck with not having side effects.

Mestinon has been wonderful for me! I was scared to try it because my stomach gets upset so easily. However, I had no negative side effects. The only odd effect is random muscle spasms but that doesn't bother me. It took about 6 weeks to start working, but it helped with my dizziness big time. I had 24/7 dizziness for almost 6 months straight last year with no reprieve even when laying down. It was AWFUL. The Mestinon helped with that. It also controls my tachycardia without slowing things down too much. The bb I was on was working too well (even only taking 5mg) would lower my hr to 38. I also was feeling like food was not moving very fast through my body and would get bloated and full with very little food. The Mestinon actually helped give me a little bit of an appetite back and helped me eat more comfortably. I also take Midodrine with it. I hope it can help you too! Good luck!

Prayers for you! I hope your doctor is wrong and you hear some positive news!

I'm sorry you're going through so much. Hang in there and don't feel bad venting. That's a great use for this forum. Good luck and sending positive thoughts your way.

Thanks for starting this! I was thinking of asking a similar question. My topical cream is basically just an expensive lotion for all the better it works. I am really reluctant to start any other meds. I see my neurologist again in May, I will definitely talk to him about the alpha lipoic acid. Issie - may I ask what kind of dose do you use for it?

I'll definitely keep you all updated if I find anything. I just need to get the go ahead from my boss to order the necessary primers to run the tests. I'm interested to see what this brings. I've seen from firsthand experimental experience in the lab where I work how a simple amino acid change can wreak havoc on protein function. Especially if you are changing the charge of the amino acid. Simply going from a negatively charged amino acid to a positively charged one can change how the protein folds and impact transport function. I'm not saying that it's necessarily as simple as that, especially for everyone. However, knowing if a certain transporter in your body isn't functioning properly (and even better understanding what's wrong i.e. too much activity or too little) may help determine how you will react to certain medications/treatments.

So I was doing some reading and found an interesting study in patients with "idiopathic" sfn: Gain of Function Na 1.7 Mutations in Idiopathic Small Fiber Neuropathy; Faber et al Ann Neurol. 2011 May 20; Anyway the gist of this study was out of 28 patients, 8 (almost 30%) had cSNPs (coding mutations) in a sodium channel that is present in small fiber nerves. These mutations caused a hyper-excitability of neurons and they are hypothesizing that increased activity (i.e. more sodium coming through) may be causing some degeneration in the fibers. Apparently lots of sodium can be taxing on the neurons. 7 of 8 of the patients with these mutations had autonomic dysfunction and most had a younger than normal age of onset for the sfn and no other cause could be identified. This is really interesting to me...I think I may do some experimenting on myself. A huge part of my job is analyzing human genomic DNA for mutations in the protein that our lab studies in relation to glaucoma. Well I have a ton of my own DNA in our lab's freezer because we all participated as "controls" in our current study. My boss has already told me he'd be fine with me sequencing proteins of interest to see if I can get to the bottom of some of my problems. I think I may check out to see if I could find anything out. We also do electrophysiological studies of proteins similar to those in this paper. I may even be able to do some functional testing of any potential mutations found to see if there are changes.

Natops, the topical cream I'm using has amitryptiline in it...but isn't helping yet. It has been over a week and I'm starting to think it's not going to make a difference. Not sure what the actual medication would do. I've heard that it works for some people though. rama - I've been trying to figure out where my sfn is coming from. I had a thermoregulatory sweat test 2 years ago (My neurologist is actually the doctor that designed and created that fun...he's got an engineering degree as well. So those of you who hated it have him to thank!) and it was pretty normal aside from one patch on my lower right leg. He didn't think that showed neuropathy. Both times I had a QSART done (last time about 1 year ago) the results were normal. He is thinking of repeating those tests and seeing if there has been any change.

Yay! Hope you have many more good days and can get back to school again.

I had mine removed when I was 20. The pain started when I was 17 and I had every test done and nothing showed up. After years of barely being able to eat, my mom and I asked the surgeon to take out my gallbladder because I had all of the common symptoms. When they took it out, it was covered in scar tissue. The surgery made a huge difference for me!

Haha you are definitely creative! However it actually does work for you at least you'd have a way to get relief without any side effects.

alijames - yeah EDS is Ehlers-Danlos. I have the hypermobility form (previously type III). It's interesting how so many of these conditions occur together. What is odd to me is the neuropathy is starting 2 years after I got POTS. Is that normal? Although I don't know if any of us could be considered normal anyway... rama- That's a really interesting idea! Is it working for you? I'm not noticing much with the cream yet...but I'm nervous about putting too much on. It says on the warning label that if I apply too much I can hallucinate from the ketamine! I am wondering how much is too much...either way that wouldn't be good for me while at work.

So I followed up with my neurologist again today after a bunch of fun tests to determine the cause of all my burning pain/numbness tingling and weirdness that has been occurring. Turns out my quanitative sensory test showed decreased sensation of cold and a hypersensitive reaction to heat/pain. I got the answer that I expected..."idiopathic" small fiber neuropathy. I seriously hate the word idiopathic. Anyway, he knows I'm pretty sensitive to meds and doesn't want to bog me down with more pills so we're going to try a topical cream of lidocaine/ketamine/amitriptyline to see if it takes the pain away at all. I've also been having some weird visual things and terrible headaches so he also thinks I'm having lots of migraines. I'm really hoping he's right even if the cause of the neuropathy is unknown. I was seriously starting to worry I was developing something scary like multiple sclerosis. As far as he can tell my CNS doesn't seem to be involved. (Yay!) I'm curious if sfn is common in EDS...any other EDSers have it as well?

Fantastic news!! So glad you found something that really seems to be working for you!

Reading has been huge for me. I think I've read 20+ books in the past 7-8 months. My favorite outlet though is baking. I love to feed people. Even when I'm feeling lousy, I can sit on my stool in the kitchen and still do it. I especially love to decorate cakes. My dream would be to go work in a bakery someday. Since I work in science, I don't really get to feed my artistic side. Here's one my favorites I did for a friend at work for a party she threw: https://sphotos-b.xx.fbcdn.net/hphotos-snc6/183755_10150192017659554_5983465_n.jpg

I was having a really tough time last summer. I couldn't walk much without being incredibly dizzy. At that time, even laying down wouldn't get rid of the dizziness. Since I was on STD, my work had me going to a physical therapist. He had me doing strengthening exercises I could perform sitting or laying down. I started very slowly. I then found a free recumbent cycle in the classfied ads and started using that at home. I could barely do 10 minutes at first without feeling horrible. I kept very slowly building on that. Then, while at my family's cabin I realized that my dizziness subsided somewhat while being in the water. I started walking/jogging in the pool at the gym at my work daily. As I got better at that, I decided I needed to be able to walk on regular ground. I started doing walks around my neighborhood. I eventually started to jog/run. I had worked up to 5 miles at a time. However, then I went back to work full time and my body was not going to cooperate working full time and exercising that vigorously. (I also think for me, the reason I started to improve last summer was also that I had begun Mestinon and it was starting to work.) Most steps of the way, exercise was so difficult. After every exercise session, I was so tired/dizzy that I would usually fall asleep on the couch for a good hour or two (even after just 10 minutes on my cycle). I was always very athletic before I got sick in 2011, and POTS has really put a cramp in my lifestyle. I'm not sure what type of routine will work for you but I advise starting very slowly. Everyone is different, but more than likely it is going to take awhile before exercise stops wiping you out. Eventually you hopefully will build a little more tolerance for activity. It's frustrating and some days you may feel horrible (at least in my experience) but hopefully if you keep slowly building it may get better. If you could start with exercise you can perform sitting then progress to walking it might get easier. Good luck, Abby! I hope you can find something that works for you. Heather

Interesting that you posted this thread...I was just going to ask a similar question. I'm currently being worked up for small fiber neuropathy. I will follow up with the neurologist next week and hear what he thinks of the test results. One of my biggest concerns is that he'll just say something like, "Yes it's sfn...here's a pill to deal with the pain." I don't want to just add another medication. I want to know if I do have sfn...why? Have any of you who are diagnosed ever find out the cause? Or is this just going to be another possible diagnosis to add to the pile? I am tired of just trying to treat the symptoms of everything. I was diagnosed with EDS-hypermobility last year, but even the geneticist told me that it's a bit of an arbitrary diagnosis since there aren't any specific labs we can do to confirm it. I've just always had a lingering concern in the back of my mind that EDS was never the answer and that there's something else going on that we haven't caught. Sorry rama...not trying to hijack your thread. To answer your questions...my OI symptoms sort of wax/wane but there's usually an underlying not quite right feeling. Heaven help me if I forget to take my Mestinon right away in the morning because then I get a big reminder that it's still there. The neuropathy feelings for me have been increasing steadily for the past 2 months...I get burning pain/numbness and tingling and pins/needles. Another fun thing that has started is I keep thinking that it's raining or there are leaks in the house because I get feelings that there's water dropping on my skin when there's not. My symptoms all started spontaneously with no apparent trigger. My worst OI symptom is a toss-up between so dizzy I feel like I'm going to throw up and tachycardia that takes my breath away just by standing still.

Good luck! Hope you get some answers. You're lucky you're going to Mayo AZ instead of Rochester...the weather here is really cold right now! They just announced this is the coldest 1st day of spring in like 48 years. Enjoy the warm air!

The great thing is all of the buildings are connected via skyway and a subway system so you won't have to go out and freeze in the lovely winter weather. There are some pretty yummy restaurants downtown. A few that are really close to the clinic are Chester's, Pescara, City Cafe, and Sontes. One that's not right next to the clinic but is close is called Twigs. It is one of me and my hubby's favorites. I work at the clinic and live nearby, so if you have any questions in particular, hit me up! Good luck with your appointments!! I hope you can find some answers.

Thanks for the advice everyone! I'll probably be putting a call into my neuro doc on Monday.

Hi All! Hope you're all doing well. I've been having some odd episodes lately that don't follow my normal POTsy fun. I've had a few episodes in the past days where I get these weird visual disturbances. It almost feels like flashing light in a circular pattern. It starts in the middle of my vision and goes out to my peripheral vision and back again. It almost reminds me of when I see stars from standing up too quickly but this lasts for 10 minutes or more. It really messes up my concentration and vision. It actually starts to make me nauseous and a little light headed feeling. After it passes I end up with a splitting headache and feel kind of drained and sick to my stomach. Anyone experience this? Does this sound familiar for anything? I've read some about migraines with auras, but I don't know if I've ever had migraines before. On another fun note, I've been noticing lots of random pain that feels like a horrible burning. I'm wondering if it's some kind of nerve pain because it seems to go along the lines of my body. It will be really severe pain that will last anywhere from 5-20 minutes and then go away. These two things have started happening more and more over the past week. Any experiences people have had would be much appreciated!

Not sure what kind of books you're into...but I'm a big of fan of thriller/mystery type novels similar to Dan Brown and Michael Creighton. My two new favorite authors are Steve Berry and James Rollins. Really exciting books and a lot of fun to read! One thing POTS has done for me is helped me rediscover how much I enjoy reading. I've read at least 15 books over the past 6 months or so. It has been really nice!

I got called this summer and explained that I had been currently unable to work for several months due to POTS. I briefly explained that I had a difficult time being upright for extended periods of time and that I was constantly light-headed and often had syncopal episodes. I added in all the other fun symptoms I was experience as well. I totally expected them to send me forms for my doctor to fill out, but I got a quick response by mail telling me I was not needed for jury duty at this time because of my medical conditions. I joked that for the first time, POTS actually did something good for me.

Really interesting stuff, Issie! Good luck to you. I really hope these changes help you start to regain your health.