Raisin

Rock it out AnaBanana! Prayers have been sent!

You were probably experiencing brain fog so you forgot to lie down! We should all wear tshirts that give instructions to others to tell us to lie down if we look like we are struggling. Lol

Happy happy reading!

I feel so much for all of us who are searching and searching. I am grateful for this support. Sometimes I get so sad. I pray for all who are affected by Dysautonomia. We need docs who are able to see us as "zebras" and are invested in getting to the bottom of this.

Wow. I had several tests. One for paraneoplastic and some Tests searching for autoimmune but this shows many many antibodies that certainly weren't included in my tests. Do you think some doctor/doctors out there would look at all of these? And then would that be an immunologist? Some folks, I believe, could really be helped by this, eh?

I am glad you are monitoring yourself re symptoms, feelings, etc.. I , unfortunately, do not do well on SSRI's as they make me manic. I felt like a wound up toy. But, others have certainly done well with them. Please keep tabs and communicate with your doc. I believe Zoloft also needs to be tapered down if you and your doc decide to discontinue that although 7 days is not very long. We are such sensitive souls! God Bless.

Don't give up hope. I was housebound and mainly bed bound for about a year or more but now I am getting out and about with limitations. I have good days and bad days as many have discussed. I remember reading on here also that the folks who are really really better are probably not checking in on the forum so much. I have times when I think it's not worth the struggle but I now know that the "low" feelings, for me, are transient and I need to hannnnnnggggg in there. You are not alone. Everyone here understands. Keep on rocking' Andybonse! We will all get through this together!

His name is Dr. Craciun. He has a rather thick accent as he is from Romania so sometimes I have a hard time understanding him. He did a blood test for sjogrens but asked if I would rather have a lip biopsy done which is more accurate (wish I would have done that now). He ran a paraneoplastic panel as recommended by Dr. Shields who supervised my Thermoregulatory sweat test although he seemed hesitant to do so. He also tested for Lyme disease and ordered MRi s. he also did a 24 hr. urine collection for norepinephrine, etc.. He has not tested for Mcad and I am wondering about that also as I don't have the burning sensation but I do get what seems to be surges of anxiety even when I am just sitting and watching a funny movie or having light conversation. I understand what you are saying re a cause. I am a WHY person. I may seem hesitant to recommend because I also have ataxia and he doesn't seem to be able to explain that yet or investigate that fully. I am trying to be a good advocate for myself and he does seem amenable to any suggestions that I have. I am so grateful to him for seeing the Pots in the first place after 11/2 years of others brushing me off. It gets so complex, doesn't it? I wish you lots of luck and prayers!

Hi Northerndarlene. I see a neurologist there and was happy with the initial testing but not so much on the follow up. But, I have heard good things about Dr. Shields who is in the downtown location. I do see a Dr. jaeger downtown who is more of the vascular side of Pots. He is very good I feel. He said he works with the neurologists. Regarding cause, I suppose it could be vascular or neurological or both but my neurologist is the one who has ran most of the causal testing (paraneoplastic, autoimmune, etc.). They have not found the cause of mine as of yet but I have always been a conundrum wrapped in a riddle. Lol. Best of luck!

No...interested though as I live near there!

Yep. Sleep is so key to my health. Heat doesn't help. Nap nap nap time!

Yes. I do this quite often with the brain fog thing. It was funny because I stink at Trivial Pursuit and once after starting the meds, I actually answered all the questions given to me except one or two. I think that day I had great brain blood supply. My family (who has seen me stink at the game for years) were all looking at me funny. Ha! But, alas, it was an isolated incident. Most of the time I have word salad coming out of my mouth or I just stop mid sentence not having a clue what my purpose was in speaking. I often forget how to say exclamation point. Odd.

LOL. They tell you to hit when you have a symptom. Be careful what you ask for. . . . .Hahaha! Right on!

Yes! I have a 15 mos Mastiff that we got a few months ago and she has been a godsend. She just had her first training class today and did very well. The woman said she would make an excellent Therapy dog which gives me hope that maybe she and I can volunteer when I am feeling a bit more stable (ergo the hope factor). She doesn't need much exercise at all being a large breed puffalump but she is needy in regard to attention and wiping the drool from her mouth everytime she drinks water. Ha! My hubby gives her breakfast so that is helpful in my need for sleep. She does make me laugh and that is healing and to be honest,....when I feel REALLY down, I know I need to stick around for her. So, yes, yes and yes! I would recommend kitties too! Like Looneymom and Goschi said, a snuggle is worth alot and I do believe they can lower our stress levels.

Hi Kris! I am unsure but I know that after I had a thermoregulatory sweat test, I learned that I don't sweat appropriately at all. I think this has been a problem even before I felt very Ill and doesn't seem to improve for me being on the meds. I was actually going to check now into a cooling vest. Can you continue to wear the cooling vest while riding? I ask because I truly believe that for me it is a safety issue as last summer I think I had a small heat stroke and was unable to use my left leg for a few days. That was scary and I understand what you mean about it feeling like a true emergency. All I could think was "oh ohhhhh..." I am not trying to scare you of course, I am just thinking that we need to take the heat seriously. Best of luck and safety first!

Soooo glad to hear that you have found the key issue. Welcome and I know you all can definitely find support here as I have. Hope the treatment plan goes well for you.

Yes GJensen...I got trigger happy. I didn't care because I wanted them to see so badly that I could feel all of this stuff.

I began the Levine protocol about a month ago. I can't judge too much yet but the physiologist said it will be awhile before improvement is noticed. He also said interesting things like don't go two days in a row in the beginning because chronic fatigue seems to come easily to those of us with Pots. He also restricted me to only the recumbent bike in the starting weeks and said don't ever do more even if you feel like you can on a particular day. I asked if I could walk in the pool, maybe try chair yoga, etc. nope! He even said not to try long walks yet. I am trying to do this exactly as advised for me so that I have the best chance of improvement. I did have a few days of extreme exhaustion but I can't say it was from the exercise and has since improved. I have to admit that at first I was very blasé about it all but I have some hope brewing now. And, it is nice to see people moving in a gym and trying to improve whatever their circumstance. I choose not to judge my slowness either. I also tend to go when the seniors are there! ☺

I was taking 2.5 three times a day....just increased to 5 mg. twice a day after a downward trend which I think is due to the weather warming. It is helping I think but I need more time to really tell. My scalp itches like crazy so I sometimes feel like that commercial (was that a dandruff commercial?) but I'd rather have an itchy scalp and be standing and out than home in bed. I have been getting the chills though too which is quite uncomfortable for me. Doc said because I am 48 years old, he doesn't want me to try any type of steroid med. is fluorinef a steroid? Must google that.

My Pots doc said that it is the drop in hormone levels that can affect our bodies ability to hang on to fluids. He said this after I asked him if pregnant women who crave things like pickles (salt salt salt) are doing so because their bodies are creating more blood volume for the baby. Lol. The more I read about all this stuff, the more I realize that this can get quite complicated re hormones, antibodies, allergies, blood volume, histamines, etc. etc.

Yes! I am liking the space ideas!

Thank you and welcome!

Thought I would share with you all that when I tried to describe POTS and Dysautonomia to my mom she said, "well, it sounds like you just need to live the rest of your life upside down". Hee hee. It does make sense, doesn't it?

I also have the pvc's and Pac's which are very evident to me when they happen and they also seem to come and go. After wearing a monitor for 30 days, the autonomic doc showed me the reports which were about the width of a Bible. I was a bit embarrassed and just sheepishly smiled and said ' so sorry' and then laughed which made him laugh.