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That's great lemons. Is your hr still in the 90s though? Sorry to hear about the fatigue. I know lipoic acid gives me a lot of energy.

Im all over the place right now. There's only a slight logical trend that I feel better at night but unfortunately not so tonight. Are you sure its not just that you're feeling bad until evening comes?

You know how compression on the median nerve can cause carpal tunnel syndrome, I wonder if compression on the vagus nerve from neck tension or a malformed anatomy surrounding the vagus can cause dysautonomia?

I was going to suggest watching your favorite comedy, but I realize that might make it hurt worse when you laugh. Glad to hear you made it to the other side.

I definitely believe neck tension has an effect on cerebral perfusion. I notice a well executed self neck massage can alleviate my pots- tension headaches and allow me to think clearer. Sometimes I think it helps my lightheadedness too. Julie interesting you should mention that. I also get the strong desire to clench my teeth and often have the tongue reflex up to the roof of my mouth. This just happens automatically.

Could it be a problem with my veins? Bring a copy of my case study on inferior venal cavalry and pots patient. Give them the study as you ask so they don't just instantly reject you. Could it be a problem with angiotensin ii? Bring both the study by Stewart and Raj about angiotensin ii and pots. Could it be a problem with my vitamin D? Bring a copy of the case study I posted about vitamin d levels that are low in pots patients. Ill post the links to these things later right now im on my cell phone.

One of the first symptoms to come and go. Sharp pain lasted a few seconds.

Wow katy you seem proactive. We haven't cleaned our house in 5+ years.

Connective tissue is what holds nerves together, dysfunction in that might lead to the nerves being distended and dysfunctional. Purely speculation. If I were you I would bring the patient advocate. In addition you will want to start talking about experimental treatments what the doctors will be willing to do and what is the most likely to work. If there's anything out there they should know about it. Hang in there

How would you rate your indoor air quality? Do you notice worsening of symptoms when you try to clean? I feel like I got slammed by a wrecking ball after trying to clean our very dirty house.

The complexity of this illness is such that it is difficult to say with absolute confidence what is going to happen. I will say that it does seem possible to "balance" out excited sympathetic activity by increasing cabal tone. This effect has been shown in studies on aerobic exercise. So in that sense your doctor is right that the autonomic system can be rebooted. However how to reboot it is I suspect different for everyone. Anyways I will say that most studies show people improve over time so take heart in that.

Woa Heiss not going to lie when I read the thread title I was thinking something else was happening. Scary. Hey always remenet that public libraries usually offer free internet access. So you can always drop in from time to time and wed love to hear from you

When I first started I felt worse after exercising. I was also slightly overweight so that didn't help. Now I feel immediately better almost instantly from when I slow down I feel much more clear in my head. The tension headache and lightheadedness are relieved and after about 10 mins ill get the full fledged endorphin rush which makes me do all sorts of crazy things.

Since I've started exercising I've noticed that I can still have less symptoms even when my HR is in the 100s+, and the 90s feel about the same as the low 100s to high 80s. But when my HR was in the low 80s to high 70s I've always felt really good. Like remission from POTS good. Unfortunately I haven't gotten those to last yet.

These past few weeks I've noticed a decline in my standing hr. But that's only a general trend. Im getting days where its back up to 125 and then down at 78 a few days later. This illness is so weird. I don't understand. Im not doing anything different if anything im increasing exercise.

I've worked in grocery stores and that was the most difficult job since I had to stand in one spot all day. By the end of the day I'd collapse on my couch and didn't have much energy for school. When I was in college I found being a research assistant was tolerable. My "boss" (professor) didn't give a **** what I did so there was no stress and I basically just worked on data all day in a basement. I actually miss that job and wish I could go back. I don't think I could handle a full time job which is why I haven't pursued one. Just going to classes basically kicked my butt pretty severely.

Dont know. I had pots symptoms before I ever tried ssris. I can tell you one thing though, the ssris caused my heart to flutter and gave me tremors. So I think we already have some type of ans or catecholamine dysfunction that is excarbated but not caused by ssris.

Allie also have you had a sleep study done? With brain stem dysfunction you might have disrupted sleep which could be greatly contributing to your cfs.

Have they checked her heart rate lying down and standing up? Everyone's pots is different, so it's difficult to give you specific advice in regards to what to expect. The pain condition you describe im not familiar with but perhaps someone else on this forum can speak with experience. I can tell you however that aerobic exercise has helped my pots immensely and if it is pots and she is capable you could talk with your doctor about an exercise program. As for college, I managed to go all 4 years with undiagnosed pots. I did well enough due to great friends and now im planning on going to medical school. It can be done but she's going to need a lot of support.

Dizzyallie it might not be your vestibular nerve then. Have you been checked for bppv? If it were me I would have a doctor check for central vertigo. I've noticed my dizziness has become less as my pots has become less so there might be some type of autonomic issues going on as the cause. As for VRT sorry to hear it hasn't helped you. Some people though it takes 3+ months before they notice effects but anyway I would talk with your doctor about incorporating different exercises. As for your lightheadedness and anxiety I can tell you that endurance aerobic exercise has helped me a lot. I know with cfs. That might ne difficult but I highly encourage adopting an exercise program as it has really helped me. Be well!

Heiss hang in there ole' lady. That situation seems very scary, and im sure the icu isn't exactly a warm environment. On the plus side you're feeling things probably no one else will ever experience. . Being described as a "very severe case" is no doubt very scary but I suspect that it's as much just not knowing what is going as it is the severity of the symptoms. I hope these new specialists they refer you to will have a greater understanding of what to do to get you out of this predicament and nurse you back to health. Sending healing vibes your way. Stay strong! And don't forget to smile sometimes! I suspect icu is deficient in smiles.

I always wondered why autoimmune disorders wax and wane.

There's no rhyme or reason to this. As well this past week I've had periods of time as well with remission from POTS. I wish my body would tell me ahead of time when it's going to give it to me so I can plan activities to do. Unfortunately they don't last too long. But I didn't have remissions for 6 years so I'll take what I can get.

I offer no defense of my interest. My music interests are rather random