HopeSprings

Love it and wanted to share. http://angelayendes.webplus.net/

Yes, after many bad reactions, I'm afraid too. Midodrine was no good for me, but nothing scary happened, just really exhausted and couldn't get off the couch the whole next day. I don't think this is a typical reaction though. When trying a new med, I always ask for the lowest possible dose, preferably pediatric and then cut that into little pieces (making sure it's safe to do so first) and just take a little. If nothing bad happens, I add a little more. If I feel bad from my little crumble, I can only imagine what the full pill would have done!

Amazing how I get a weird symptom and someone else here talks about the same thing. I've been having the exact thing on one of my fingers - feels wet, but it isn't and it's a cross between feeling hot and cold, but mostly it burns. I have neuropathy so I assume it's part of that. Have you looked into neuropathy?

Sue - have you pursued small fiber neuropathy? I've seen people without classic neuropathic symptoms end up positive. I think Rich is an example? I don't remember him reporting symptoms that scream neuropathy, but he tested positive. Maybe it's something to look at?

Yes, I have the same problem. It definitely makes me sicker. I've been avoiding coloring my hair for weeks because I don't want to go through it, but my hair is in serious need of some love. I never thought about checking my BP after - I'll have to check it out.

"The feelings of paresthesia, pruritus, piloerection and chills are pilomotor reactions associated with the action of Midodrine on the alpha-adrenergic receptors of the hair follicles." "pi·lo·mo·tor (pī'lō-mō'tŏr), Moving the hair; denoting the arrectores pilorum muscles of the skin and the postganglionic sympathetic nerve fibers innervating these small smooth muscles." It's interesting and I would be wondering too. I could be completely off, but based on the above maybe something to do with nerves?

This is my opinion - see if others agree. I say include as many records as possible that have to do with you seeking an explanation or help for your condition. The more evidence, the better. It took me a lot of years and a lot of Doctors before I finally got a diagnosis too. One of my lawyer's arguments is a person must be feeling pretty poorly to be seeing all of these Doctors. Even if they were not able to diagnose you, your records should show what your complaints were and those complaints will tie into your later records which show your ultimate diagnosis. They will also show what the Doctors thought or observed and what diseases they were trying rule out. For example, if a Doctor suspected MS and sent you for an MRI of your brain, I think that shows the Doctor felt something serious might be going on. On the flip side, I was worried because some of the Doctors I saw were trying to pin me as "anxiety" and that shows up in my older records - but the lawyer said it was okay because the symptoms were explained later by the correct diagnosis - POTS. Good luck!

Oh Jangle, if you can .. please please ask them about the heart auto-antibodies when you're there.

I've never been, but just wanted to wish you good luck because I know you waited a long time for this appointment. Hope they can help and good luck in medical school!

That's wonderful! I'm so happy he doesn't have to miss out on this important life event! Hope everything goes smoothly and he is able to walk with his class. And you are such an amazing and dedicated mom - I'm sure you're so proud!

I have tons of ear problems - tinnitus, pressure, cloggy feeling, hearing loss, what appears to be drainage, but they never see anything in there. I had a borderline positive ENG and was told I had eustachian tube dysfunction and "borderline" menieres or some variant of menieres, another Dr. said it was hydrops. I've never had spinning vertigo though so I don't know if that's right. One thing that helped a little was steroid injections into my inner ear, but that was kind of scary and it didn't help enough to be a long term option. Ugh, there are too many diseases they can't seem to do anything about! Maybe try a neuro-otologist - they should know what testing to do.

There are tons of possible benzo withdrawal symptoms (you can look them up) and Klonopin in particular can be nasty. It's going to be hard to sort out what's withdrawal and what's POTS (I assume POTS?) because there is a lot of overlap in symptoms. Just make sure it's a nice slow taper and then give it some time after he's off (months even) to determine where he is at naturally. I hope it goes smoothly.

Sue, this is wonderful news! 50% improvement is a lot and I hope it only gets better from here. I am also so happy to hear that you made it both showers, the rehearsal dinner and the wedding! That took courage and I'm so glad these ended up being positive experiences for you. Let's hope you're on the road to recovery!

Giant (((hug))) to you. I'm so sorry for all you've been through. Please don't give up! and I hope you find answers soon.

Wouldn't it be nice if they found the autoantibodies, a blood test for it was made available, we all test positive, and they have a medicine to cure or treat it? Am I being overly optimistic?

It must be something about the word "disabled." Ugh, I just recently had a conversation with a very close family member and told them about my upcoming hearing for SSDI. I was expecting to hear something like, "good luck, hope you get it." Nope. I got a pause and then.. "are you sure want to do that, why would you want to be labeled disabled?" And who are we worried about labeling me exactly? I had to say let's face it, I am disabled, I don't like it either, but that's reality. I guess the word conjurs up all sorts of images at the extreme end of the sprectrum? - I don't know. Anyway, POTS shouldn't keep you from having the family you've dreamed of. Yes, it's difficult, but if you have support - it's do-able. You described your feelings so eloquently in this post. Maybe you can talk to/educate her?

I'm so impressed with you. I've struggled for years to try and find some peace in all of this and I just find it really difficult. I understand what you're saying about dreams and sleeping. I'm generally not sick in my dreams (though I've had dreams about Doctors telling me they figured out what I have!), but usually I'm my old self and then I wake up to the very disturbing reality that is my life. To be honest, I wake up every morning with a feeling of gloom. It happens right in that groggy moment between sleep and wake. Then I get up -because what other choice is there?- and go through all the horrible symptoms (the crazy racing heart being the most difficult). But after a while things calm down a bit, I feel more lucid and at that point, I feel less gloomy and can carry on. I'll bet this sleep thing is common among people with chronic illness. I've thought about seeing a therapist to help me deal emotionally, but I'm not sure what they would be able to do. Have you found therapy helpful for this? Would you mind sharing any coping strategies that have been suggested to you?

Celiac can be associated with (cause?) Small Fiber Neuropathy. Did they say anything about that?

Is there some activity he can do regularly on the weekend that your husband can bring him to? My son is 9 too and plays soccer. Practices are Saturdays and games will be on the weekend too. My husband brings him to practice and brings my 4 year old daughter along so she can run around and play while he's practicing. When games start, I'll be there with my little beach chair to watch. He also did karate for a little while and that was a situation where he could be dropped off for an hour, then picked up. Maybe something like that? It's hard, I know. If it wasn't for my husband, I don't what I would do because he brings them to most of the activities, birthday parties etc. When my son was younger I pushed myself to do a lot more, but as the years pass, I find it harder to push through. My daughter was invited to a tea party last year when she was three and it was at 11:00 in the morning on a weekday. I had to respond with a "maybe" not knowing how I'd feel that day. The day came and I was way too dizzy to go and my husband was at work so he couldn't go, plus I don't know about a man at a tea party with a bunch of little girls and stay at home mothers! Anyway, I felt so guilty, so sad for my daughter and angry with myself, I just cried. I worry about how I'm going to do all the girly stuff with her as she gets older. Kelly's words are reassuring though. I agree that kids are overscheduled anyway and don't really need all this stuff. I think we probably feel worse about it than they do. My daugther didn't even know about the tea party. Just do the best you can.

I agree Lemons, the POTS name should be ditched or modified. It so minimizes the problem and doesn't at all capture all the dysfunction.

Ahhh - makes sense now. Thanks for the explanations.

Help with interpretation please. For a minute it sounds like they're saying we have the perception that our sleep is poor, but it isn't, but then it sounds like they did find something off with our sleep. I can't tell! http://www.ncbi.nlm.nih.gov/pubmed/23538032

Yey for you Puppylove! Hoping you have more better days!

Oh and I agree with you Rich that small fiber neuropathy is probably the cause of autonomic dysfunction for many with POTS, but it seems pretty challenging to find the root cause of the SFN. I've been tested for sooo many things that can cause it and all has been negative so far. Very frustrating.

Lemons - just want to get your opinion. I've said this many times before... A lot of my problems began immediately after a chiropractic adjusment. It was quite high in my neck, up near my skull and right after he did this, my heart started to beat really fast. Things went downhill from there, with lots of new symptoms added over the next few weeks. Do you think it's possible to have a vagus nerve "injury" which could cause all the dysautonomic symptoms? Is there anyway to look at this nerve or to test it?